Death/Dying, Grieving Voices Guest, Grieving Voices Podcast, Podcast, Spirituality |
Brent Scarpo | A Secret Sign & Lessons from The Shawshank Redemption
SHOW NOTES SUMMARY:
Fear can hold you prisoner, hope can set you free. – The Shawshank Redemption
This week’s guest, Brent Scarpo, was a casting director for one of the most acclaimed and beloved films of all time, “The Shawshank Redemption.” Through his personal love of the film, he shares a few of his favorite lessons from the movie.
These lessons served him well as he grieved the loss of his best friend and mother to cancer. But a chance conversation with his mother years earlier would be the catalyst for comfort after she passed. They had agreed on a red balloon being the sign they would bring to the other so the one left behind would know there is life after death. They also created very specific rules around this sign and sealed the deal with handwritten letters preserving this conversation and plan in a sealed envelope that wouldn’t be opened until after one of them passed away.
Through his grief, Brent found comfort and healing through group and one-on-one therapy as well. But, the Red Balloon has become a huge part of his existence, landing him on the Today Show, and soon a book releasing, very fittingly, on Mother’s Day.
Brent offers many tips throughout this episode but there’s one question you may be surprised to learn the answer to. What’s the question? How do we learn to laugh again without the person we used to laugh with? The answer? You’ll have to listen to find out!
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Victoria Volk 0:00
Hi this is Victoria of theunleashedheart.com and you’re listening to grieving voices, a podcast for hurting hearts who desire to be heard. Or anyone who wants to learn how to better support loved ones experiencing loss. As a 30 plus year graver in advanced Grief Recovery methods specialist. I know how badly the conversation around grief needs to change. Through this podcast, I aim to educate gravers and non gravers like spread hope and inspire compassion towards those hurting. Lastly, by providing my heart with yours and this platform, Grievers had the opportunity to share their wisdom and stories of loss and resiliency. How about we talk about grief, like we talked about the weather? Let’s get started. Thank you for tuning in to grieving voices if this is your first time listening, thank you. And if you’ve been listening for a while now, thank you as well and welcome back. Today. My guest is Brent Scarfo. He has over 30 years of experience as a national speaker, life coach, producer, writer, director, and casting director in Hollywood. He has worked on such well known films as The Shawshank Redemption, that thing you do Air Force One and Matilda additionally, Brent has presented 1000s of programs to high schools, colleges and corporate America, numbering well over 1 million participants. In addition, Brent was featured on The Today Show storytelling writing contest. Everyone has the story, where his story, the red balloon was chosen out of 100,000 entries. The red balloon story beautifully depicts the loving relationship of Brent and his mother and their fascination with life after death. Through many conversations, he and his mother created a plan to prove that in fact, there was life after death, the basis of the red balloon story, which has now become his book, The Red Balloon, how to transform your life one inspirational story at a time. Additionally, Brent is a life coach specializing in millennials, where he takes his years as a former casting director and marries it to his life coaching career and success pro in such programs as the 10 life coaching lessons, I learned casting the Shawshank Redemption. Thank you so much for your time and being here today.
Brent Scarpo 2:26
Well, thank you for that wonderful introduction. I so appreciate being here. And thank you for all that you do.
Victoria Volk 2:31
Yes, thank you for your time. Let’s I guess start with the red balloon and how, how this all came to be and about your mom. And
Brent Scarpo 2:42
Yeah, so my mother, I’m an intuitive life coach, Intuitive Life Coach is somebody that has a high level or we all have an intuition, but I’ve actually worked on it. So you know, it’s like anything else in the body, some muscle that once you flex it, once you strengthen, it just becomes stronger and stronger and stronger. So my mom and I are best friends. She’s a single mom that raised three kids by herself. Her name is Betty Scarfo. And I woke up at three o’clock in the morning one night, and I just I got a message, I got a message that my mother had had cancer. And she had just moved from Warren, Pennsylvania to California where I was living, she lived a few blocks away from me, actually. And I was so overwhelmed by that feeling that I didn’t even go to bed for the rest of the morning. So about eight o’clock, I called her and I said, Hey, Mom, I said when’s the last time you’ve had a physical? Right? I didn’t tell her about the dream. I choose not five years ago, when I left Pennsylvania to come here. And you know, we especially I think with women, we have this ability to take care of everybody else but ourselves. And I was like, Mom, you’ve got to look, I’m making an appointment for you. Right? Well, we made the appointment with my doctor, and everything was hunky dory, except for a chest X ray. And that’s when we found a dark mass the size of a half dollar. And unfortunately, my mother had lung cancer. So I listened to that voice. I listened to my intuition, right as an intuitive life coach, you know, I do programming with clients to help them create the best life possible, the best versions of themselves possible. And so I spent about two and a half years as my mother’s primary caregiver. I told her her only job was to eradicate cancer. And so, you know, I was really grateful because the doctor said, Boy, had you not come, you know, you probably would have would have had a lot less time. And so you just kind of went on this journey. And then, you know, it’s interesting. My mother was diagnosed in the end of 95. She had all of 96 and then on January 26 1997 13 days after her 59th birthday, and six days after my 33rd birthday, my mother unfortunately passed away. She her cancer just And metastasized to her brain. We did hospice, which is the greatest gift to mankind, I highly recommend for anybody who knows that they have to make a transition that you try to choose hospice is the way to make that transition. And years and years and years before that, my mother and I guess we were really good friends, we always talked about things very philosophical we’d ever break we are we call our weekly breakfast, or lunch, and I take her out, and we just talk. So we talked about death and dying, something that people really don’t talk about. And I think we need to talk about it. So I said to you earlier, I’m so grateful for what it is that you’re doing, because people don’t necessarily ties out your top 10 Though, in the last couple of years with COVID, we’ve almost been forced to talk about this. And so I remember, my mother’s one of our favorite bands, is the Beatles. And John Lennon, unfortunately, had just been assassinated. And I remember looking at the New York Times, and they talked about how Yoko Ono and he decided that they were going to come up with a sign so whoever would transition first, we’re bringing that sign back. And to them it was a yellow handkerchief. So I just happen to read the article to my mom and my mom goes, we should do that. Like we should. She was like, Yeah, I was like, Oh, I said, Okay. I said, we’ll we’ll How do we do? What are we going to do? She said, Well, you know, let’s pick assign, we’re just going to you and I, that’s it. And let’s just say that, you know, that person is responsible for bringing it back to the other person, it means that everything we’ve talked about that there is life after death, that there is a higher power of some sort, that there is an essence of who it is that you are, as far as your soul is concerned, when it leaves this earthly body is all true. I said, Okay, and so we decided on a red balloon. And primarily because when I was in second grade, there’s this wonderful French film
Brent Scarpo 6:49
Called La Rouge balloon, and it won an Oscar is phenomenal. And I said, let’s just do a red balloon. She said, Okay. And she said, but this is my mother. She said, It has to show up within 24 hours of the person’s death. Like none of this a month from now, six years from now, six months and now 24 hours. I was like, Okay, let’s, let’s do that. So we had always had this in the back burner for my we never shared it with anybody. And then as my mother was entering her transitional phase and hospice, you know, my grandmother came out my sister and brother and, you know, I kind of remembered it. And I, you know, finally as we’re getting closer, I thought I better sit everybody down and kind of tell them what we did, you know, X amount of years ago, just in case I’m not there when it happens. You know, the last thing I need is, you know, my grandmother who was 82 at the time to have a red balloon appear in front of her her have a heart attack, and I got two dead people on my hands. You know, I mean, it was really, it was getting close. So I sat him down. I said, Look, mom, and I did this thing. And if anything, just kind of quirky happens, the lights go on and offer just just know, it’s her. And I remember my grandmother saying, Well, what was the sign? I say, I just can’t tell you. I said I you know, I just, I just we’ve kept it for so many years. So I was in doing a play called the boys next door, where I played the part of a schizophrenic. Trust me, I had plenty to draw from. And I was really wondering, you know, when my mother passed in the middle of the run, you know, I told the director, I said, Look, I know the show must go on, but I might have just a few little hiccups. The final night. I was in Long Beach, California. I was living in Montrose at the time about two and a half hour drive. Curtain came down last show. I’m driving home. It’s one o’clock in the morning is pouring down rain. I remember, because it doesn’t rain in California. And this is back in the days of beepers. Remember those? And my sister paged me, right? And I pull it off to the side of the road because there’s no iPhones. And I called her and she said, Mom just passed away. I was like, wow, you know, the last curtain call. So I got home and walked in my grandmother, my sister were there. And, you know, I’m the oldest of three kids. So, you know, I think a lot of how we grieve is also based on so many factors, whether we’re men, whether we’re women, whether the oldest child, the youngest child, whether we had a relationship with the person that you passed, or didn’t What kind of relationship was there, as you well know, there’s so many factors. So, you know, I made sure that they were okay. And then, you know, you’re walking over to your dead mother, you know, 59 years old, my best friend, and I just didn’t know how I was going to handle this. I you know, this is my, my first experience with this right, as I said to many people, my mother’s never died before, you know. So, I’ve walked over and as it’s depicted in the today’s show, I leaned over to kiss her on the forehead. And as I went to do that, because she had the hospital sheet up to about her chest, I just saw this little flicker of color I don’t know why I noticed it. But I did. And for some reason I took my hands I pulled the sheet down. And they’re imprinted on my mother’s blue sweatshirt with this huge bouquet of red balloons. I literally went from pure pain, like I’ve never felt and grief that was about to feel to a static joy. And I was I was so taken aback. I was like, Oh, my God. Oh, my God. I said, Oh, my God, you did it. And I was screaming around the room. I was like, You did it. Oh, my God. Like my mother didn’t wait 24 hours. She Wait 24 seconds. Right? She didn’t. I mean, this was her personality. And I remember my grandma yelling at me. What are you talking about? What are you talking about? I said, the sign the sign. Remember what I told you about? She said, Yes. It’s a red balloon. Where did this sweatshirt come from? Right? Because I lived above my sister, my sister was the medical caretaker. So she did all the morphine and all that crazy stuff. And my sister said, Oh, my God. My mother been in hospice for about 36 days. And my sister got up that morning. And she had realized that she hadn’t really changed my mother in a few clean about three, four days. And my mother was just hideous about changing her clothes and being clean. So she’s like, Oh, he couldn’t do it by herself. So she called the nurse she says, anyway, you can stop by today, you know, this morning and help me change mom and bather and the nurse like, we’re so sorry, but we have a major emergency here at the hospital. I can’t. So my sister being my sister, got really frustrated. She walked into her bedroom, she picked up the first sweater that was on top of the pile that I brought 36 days ago from upstairs because she was living my mom with me. She just wrangled her top off, put that tarp on, decided that she wasn’t going to try and do the bottoms. And that was the shirt. And that night, as well. My mother passed away.
Victoria Volk 11:53
Wow I know. I had goosebumps.
Brent Scarpo 11:58
It’s just, you know, and I will say this to you as well. And I shared with you that my red balloon book, it’s a life coaching book has taken me 10 years to do, it’s going to come out on Mother’s Day. It’s official Mother’s Day 2022. Because I’ve been working on this, as I say bottle of wine for 10 years. So when will you uncork it is going to be delicious, that kind of deal. But I’m going to do an anatomy book on you step by step instruction on how you can do this as well, because one of the things that we did is just to prove all this. Because I said to my mom, I said well, you know, if we can’t say anything to anybody, how are they? How are they going to believe us? Right? And she said, Oh, no, no, she she brought that up as well. And I had this idea. So I wrote out the scenario, the red balloon and all that. I put it in an envelope. I mailed it to she and I and then it was post stamped. Right. So then after you’re done, and we’re going through that grieving process, and these are these tokens that you have, in an effort to get through the grieving process, I just at one point in time, decided to open it up and share it with everybody in my immediate family is like, look, this is what we did during the death of John Lennon. And we’ve been planning this for years. And it was really nice. And you know, there was a number of witnesses, which I’m really grateful for. And then my mother chose to be cremated. And I remember the crematorium saying, Is there anything you want in with her? You know, I guess you can do sir. And I decided to do that letter. You know, we’d all seen it. And so I said, Yeah, I had this letter died, like look like to give you. So it was I don’t know, it just gave me a lot of peace to help me with my grieving process. It was something that we did very proactive. And the beauty of this is that, you know, this is something anybody can do. Anybody can do. You know, even since then, I mean, there’s a whole book just on red blue sightings I’ve had since 19 9700s. You know, whenever I’m feeling a little down, I’ll say, Mom, if I could get a red balloon, this would be really great. Right? It just happened recently. You know, I was actually on my computer here. And I had asked for it a couple days ago and I turned around and you know, the TV’s on. And there’s this old show Hogan’s Heroes. What was my mother’s favorite one of our favorite shows, and there’s Schultz, literally, with a bouquet of red balloons in his hand and a teddy bear and thank God I grabbed my phone, and I took a picture of it. And I put it on Facebook I said for all my red balloon fans yet again, my mother proves that there is life after death. So it’s been a it’s been an amazing journey that I’m really excited about sharing with the overall public next year. So the goal is to have the book come out tour all over the United States raise monies for charities and just get people to be a little bit more peace with this thing called grieving a death and dying and that you can plan for it. You know, people just write a will and they think that’s all you can do. No, no, no, there’s so much more you can do.
Victoria Volk 14:53
And as an end of life doula I can say to that you have a lot of choice in that you because you can, there are things that you can do or add into the dying process as the person dying. I mean down to what you want the environment like who do you want to visit you or not visit you, you know what kind of legacy you can create a legacy project as a family. And in a way, like, that’s kind of what you did like this legacy. Not a project, but this legacy. That became a project, right? It was this idea that is now almost a legacy project in a way.
Brent Scarpo 15:30
Yeah, we were, we didn’t know what we were doing. You know, my mother was people. Yeah, we just kind of did. I mean, obviously, now you’re looking at here we are in 2021. And I did something well, nobody knows this, you’ll be the first to hear this. So I spoke to you earlier that I have this adoptive grandmother, and unfortunately, she passed away on Valentine’s Day from from COVID, and some other complications. And I’ve known her for 26 years. And as you will know, you know, the grieving process doesn’t have to be over a human being, it could be over a puppy, it could over be your 401 K just went down to zero. It can be you know, a best friend or, you know, so many different types of losses of divorce. And so, I came out here just because I promised Edna, who’s the adoptive grandmother that I would look in on their daughter, they have an only child and the two granddaughters. So I’ve been here for a couple of months. But it didn’t start out that way. Because I live in Palm Springs, and I’m from Warren, Pennsylvania. So I got here and I drove right, I drove all 2467 miles and I have been to my mother’s grave site, which is still a tiny little town. It’s got a hill, you know, the first year to your point, you know, we did the candles, you pay for the candles on her on the day she died her birthday. We did the wreath during Christmas. And I think we did that for the first two years. And then I’ve been back a couple different times because it’s you know, it’s on the other side of the of the United States. But my goal really was to visit it because I realized that January 26, will be 25 years, right? So to your point, not only can you plan before you pass away, then during the process, what do you want to what do you want that to look like or be like, you know, I was just flying off the seat of my pants, one of the your point, environmental things I did was she will never be alone, right? There will be somebody around her holding her hand 24 hours a day, seven days a week through the entire process until she dies, she will never she’ll I said that people volunteer, do not walk out of a cigarette, she can not be left alone for let know, for 10 seconds is 20 seconds too long, right? It’s just that was sort of the some of the parameters that I put together, not knowing there are other things that you can do. And so I realized I was about seven and a half hours away from here. So I just got back. And I went and visited my mother. And I’m going to actually put it on Facebook and YouTube and such on January 26. But here we are 25 years later, and I went to her grave site and it’s overgrown. You know, the bronze is all just as dark as dark as it could be. And I remember going on to YouTube, and there’s really great organizations that go to VA cemeteries and headstones. And they just redo them, you know, for the military. And so I got these great ideas. I spent three days and let me tell you, my mother’s gravesite is the bomb. It’s just beautiful. It’s like, but again, you know, cuz she was cremated. So her ashes are there. But for me, it was yet another way of being able to process my feelings. Here we are 25 years later, clearly, I’ve gone through the seven stages of grief. But I look at this now. And it’s I mean, might I say it is the most beautiful grave site in the entire War Memorial Cemetery. Because you know, you can do that. So there’s the before there’s a during and there’s an after.
Victoria Volk 18:51
I’m just curious, so she was a veteran?
Brent Scarpo 18:54
No so no. Question. No. So what I did was is I was just going to go visitor, that’s it, right? And then there’s this website called Find a grave.com. Right? So because I worked in the entertainment industry for many years, you literally can go on to this websites completely free of charge. And you can find, I’m telling you pretty much anybody’s grave, anybody’s celebrity or non celebrity. And so, you know, I’ve seen like, you know, different celebrities and things and I know there’s YouTube videos and I’m you know, this is me, but I love cemeteries I love walking in because I think it’s quiet. I’d love when it says 1609 to 17 something, it’s just I don’t know, there’s something peaceful for me, it’s my thing. So I thought well, I wonder if my mother’s is there. So it was somebody took a picture and they put it up there. And I remember seeing how dilapidated it was. So I was like, Okay, I’m going to drive out there. You know, so 25th Memorial, and so you God bless YouTube. I went on there just to see well, how, how do you clean the bronze? So there was this guy. And there’s these groups. And what they do is they travel all over the United States, and they specifically clean military headstones. And I saw that YouTube, and I just saw the techniques that they use. So it was that YouTube that sparked the idea for me, but I thought how wonderful. There’s actually organizations all over the country, and they just volunteer and they go to all these different, you know, vet that memorials and headstones. And I’ve seen dozens and dozens and dozens of them. So no, she wasn’t a vet. But that I was when I was researching and I saw you get this bottle of this stuff. You do this, use this scrub, if it’s bronze, you do this, if it’s a headstone, you do this, I’m like, Okay, I’m taking notes down. And I literally had all my stuff put in the back of the car. And it’s beautiful. It’s beautiful.
Victoria Volk 20:53
That’s, that’s a really good tip. And I’m actually going to if you can send me that link. I’ll put it in the show notes for others, too. Oh, yeah. Oh, great. But also that the tutorial on how to
Brent Scarpo 21:05
Yeah, yes, great. I’m telling you, I looked at probably half a dozen and this one, right before I left, because, you know, for the most part, it my mother’s is it’s a bronze plaque plaque that’s in the ground versus a headstone. But they have that. But I mean, they tell you, like, you know, you know, to get 25 years of organic matter off the concrete, there’s a certain formula you use, and then, you know, cutting it away. And then there’s this guy, he’s got the tombstone cleaner, starter kit. So I bought that off of amazon.com. And, you know, as you said, the before and after pictures, but yeah, I’ll send you a bunch of links. There’s, there’s just, I mean, it’s weird. You think that like, like, in my brain, I’m like, No one does this, I’m but I’m going to do it. And then because of technology, where we can use technology to our advantage versus our disadvantage, you go online, and I literally, I’m telling you, you probably saw a dozen people, there was these two ladies, they were funny as all Caboose, and they did a whole, like, you know, they had to edit it, right was step by step they had, they brought out a picnic basket, they did the blanket, you know, they sprayed the thing, they’re like, oh, my gosh, this really smells bad. No wonder it cleans everything off. I mean, really, for what is, you know, could be a very sad time, you know, and then the before after pictures, and there was this is one I looked at, oh, this was really, you know, again, for me, it was really nice to do this, because it helps me process my own feelings in regards to having her her been passed for 25 years. So I saw one more and the guy was doing the whole thing cut around the grass, take, you know, get a get a spatula or whatever, the garden, do all this. And then he was redoing his son’s marker, because his son passed when he’s like two or three. So it was like, Oh my gosh. So you know, and he’s just, it wasn’t bad. But he got rid of all the grass. And then he dug like a four inch trench around the entire marker. And he’d lined it with this netting. And then he put it in white gravel. And I was like, that’s what I’m doing. Like, it was so beautiful. And then I hear I don’t I don’t know if I can even do this. Let’s let’s just see what we can do with technology. If it’s even possible. All right. We’ll see. We’ll see if we can see. We’ll see if we can see this on. On the wonderful. You too. Right. So I don’t know if I can even be seeing probably a little bit Oh, I’ll link to Okay, that’d be great. And then it? Yeah, I’ll send you the pictures and such. And that’s, that’s what it turned out to be. Yeah, the before and after, but yeah, I’ll, I’ll I’ll send you the pictures. And you can post them however you likes as people use so people can see, this is yet another thing that you can do afterwards. And just the I was on a, an all time high for good three, four or five days because it took so much work. And it really was painful, but it also joyful at the same time. And it was arduous and but it just felt so good to be able to do that for her 25 years later.
Victoria Volk 24:15
Well, and I think it’s a good point to mention, just because the fact especially if you’re the caregiver, or caretaker of someone, and you know, grief and of itself is if you think of grief, it’s like a change in behavior, like a familiar pattern of behavior. And so if you wake up every day and your first thought is what you’re going to do or what you need to do to care for your loved one who’s dying, and then they pass away and you wake up the days after that it’s that is a change in your behavior. You’re no longer waking up to care for that person. And so that’s added grief, right? Like what do you do with you, you know, you just you took some may find some relief and then you also but then again that can be conflicting because you feel bad then because you’re relieved because that, you know that that responsibility is no longer there and you feel guilty because that responsibility is no longer there.
Brent Scarpo 25:10
Well and even to your point, I’ll be very transparent. So one of the things that I did is, you know, as my mom was going through hospice, and they were wonderful, they gave us the names and numbers of different grief groups, and I chose to, I made a conscious choice. And I, I don’t care if it’s a grief group, I don’t care if it’s a life coach, such as me. But you know, the greatest advice I can give any person that goes through the grieving process, I don’t care what it is that you lose is not to do it alone. Do not do it alone. I went to therapy once a week with this wonderful chaplain, I went to group therapy one to two times a week for two years, that was like my gift to myself, right? Because I spent two and a half years, you know, working with my mom, and then it was just sort of amazing what you find out to your point, you know, I had to have this job. This is a job for two and a half years caring for my mother day and night. Right. And then when it was done, I was like, What do I do now? Like, like, I had gotten a rhythm, I got a rhythm, I hardly slept, my immune system was an all time high. And I remember when she finally passed, and I got to the grave site came back to California about two, two and a half weeks later, never been so sick. My immune system just said, okay, you’ve been on this roll, dude, for two and a half years, we need to relax. And, you know, again, I just employ all your listeners that just don’t do it alone. I mean, I think the greatest emotional challenge I faced in my grieving process was, and I didn’t really know this consciously. But it came up and it was painful, painful, is that, I realized that in my mind that I had failed. See, as my mother’s caregiver, my unconscious, said to me, your job is to save her. Well, I failed, I failed. And I’m a man. So that just adds a lot of, you know, stuff and layers because, you know, we’re the, we’re the, we’re the, we’re the we’re the caveman that go out there, and we get the food, and we help out the family. And that’s our role. And I really struggled with the idea that I didn’t save my mom. And then through really great counselors and such I came to realize it wasn’t my job to save my mother from cancer. Well, my job was to love her as best as I possibly could. And then finally came to the understanding that in that job, I was quite successful.
Victoria Volk 27:48
That’s a very good reframe. Imagine, well imagine how many people are torturing themselves with that same, that same story?
Brent Scarpo 27:57
It’s, it’s when that came up, I mean, I can I can, I can see the chaplain and, you know, and she was just, you know, this quiet denier kind of woman and she’s like, What do you, you know, do you ever blame yourself for not, you know, that your mom died? I was like, Okay. Never really addressed that question before. Why is that coming up? Right. And then all these feelings just came up. But um, I was like, yes. You know, I’m the eldest child. I’m, you know, my mom’s a single mom. There’s no husband or father, of course, I’m supposed to save her. And yes, I failed. I failed, I failed, I failed. And then through working with her, we were able to reframe it in a way that that was my, that wasn’t my job. You know, is it? Is it our job to save the person who’s going through this process? Or is it our job just to love them and be with them as best as we possibly can?
Victoria Volk 28:48
Yeah. So growing up, you mentioned it was a single household and things and so your dad was never in the picture?
Brent Scarpo 28:58
Yeah so my parents divorced when I was four. We were I was born in Pennsylvania, raised in California, but my father was a alcoholic, unfortunately, and so a bit of a narcissist. And so my mom being, you know, this is the late 60s or early 60s rather. And so she took it upon herself that I have three children, you know, I need to, you know, be there and have their best interests in mind. And so then she moved all of us back to Pennsylvania where her parents lived. And so yeah, he was never really in the picture. There’s one story about him, which is probably another show, because he didn’t show up one time, which was a very interesting time when I was 21. But no, for the most part, you know, she was a single woman at three raised three kids by herself, you know, way before the internet way before you know all that stuff. I like to say that she paved the road for a lot of these women that you know, are trying to get child support from the various people that keep evading it for some reason and, you know, laying down the laws that were necessary so that you know, these women And men can make sure that, you know, they’re getting the support that they need both, you know, financially, emotionally, psychologically, physically, you know, from the from the relationship.
Victoria Volk 30:09
Did any of those feelings from that loss of not having him in your life come up when your mom passed?
Brent Scarpo 30:17
Yeah, that’s a great question. No, and I think so funny, I really have addressed this. You know, when I moved to California, which is in 1985, it was a couple of years after that, that my mother had called me and she said, I know this was a little strange, but you know, I got a call from one of the relatives and your father passed away. Right? And I was like, Oh, okay. You know, and so, you know, I, again, you know, I, I have memories of him from zero to four, but never really had any kind of time with him. And so, you know, I shared that with my sister. The interesting thing is that my sister just burst into tears, which that sort of blew my mind. And then for me, and we sat and talked, you and I, we processed it together. And, you know, I think, because she’s the only girl, there was never that daddy figure. There was no, that father figure that I know, girls really long for and I think her grieving process was the possibility that that could be. And now that was gone. For me. It was interesting, because I’m one part I thought, Should I be crying? I was like, because I’m not, you know, and, and I explored, and I said, Well, you know, I don’t have any time with you, I don’t have life experiences with this person. I don’t have memories of this person. So, you know, I don’t have the ability to grieve over something that did not exist. Right. Was I sorry, they died. Sure. But to answer your question, I don’t think so. Because he had passed. And because I reconcile all of that, there really wasn’t, he was so out of my mind. Now that I think about I mean, that was the last person I was thinking about, you know, my, my focus is really about this woman who, you know, left this man to take on the responsibility of raising three children as best as she possibly can. And for me, it was like, Okay, I’m going to, I’ll share this story with which I think epitomizes this, I think, you know, because there are two types of dying, as you know, the one we know that’s coming. And the one that’s a surprise, you know, I had a friend that died in the Twin Towers, that was a shock. That was a surprise, right? My mother had 36 days in hospice, we could prepare for that. So those are the two forms of dying. And I remember when the neurologist came in and said, Look, your mother’s lung cancer has metastasized to her brain. And there’s nothing we can do the worst sentence in the human language, I think. And so you wrap your head around what that means. It’s like, oh, oh, oh, she’s gonna die. Okay, you didn’t say it out loud. But I was, I got what you were referring here, right? So you go through the process of what you’re going to do. And so because of my mother’s insurance, and so I said, Well, you can do you know, we can put her in a nursing home that deals with this kind of thing. Or you can do hospice, I never heard of hospice before, right? So we get all the details. And I sit down with my sister and brother, because you know, this is where then it gets really sticky. Because depending on your family dynamics, depending on how much money there is, depending on what your morals and values and ethics are each person that comes to the table when you have this transition. So I remember sitting down with them and saying, This is going to happen, you know, how do we want this to happen? And I decided as the oldest that we just be very democratic and whatever, you know, the two out of three, you know, versus being my way, because I know me. So So what do you think my sister the whole nursing home? My brother goes a nursing home, I’m like, Oh, my God. Like, that’s the last thing my mother wanted. I mean, she I said, we, you know, mom never wanted to be in it. She said, If anything should ever happen, please, oh, God, don’t put me in a nursing home. Well, they, you know, just decided to forget that part. Right. So I sat down, we just had the dialogue and the dialogue and the dialogue about it. And I knew, right, just with my work, I knew that it wasn’t about my mother, going into hospice and or going into a nursing home. What it was about was the fear that they were going to face if she was going to be in hospice and actually being proactive in the process. So if you put her in the nursing home and somebody else does it, if you put it right, and I went, Okay, so this is what I said to them, and it worked. And I I don’t even know, this is my intuitive self. I said, Look, I’ll make you a deal. Because we were at an impasse. I’ll lead this you don’t have to be there, 24/7. But I want your assistance, I want you to be there because I want you to be part of the process all leave this, let’s just do this. Let’s do hospice, let’s do hospice this time. And then I said, and this Hi, mom dies, we’ll do the nursing home. And he just looked at me.
Brent Carpio 35:18
And he’s like, What do you mean? I said, because this is the first time she’s going to do this, we get one chance. And I’m just afraid we’re gonna pick the wrong one. And they decided that we would do hospice,
Victoria Volk 35:30
That’s a good reframe to specialize in reframing.
Brent Scarpo 35:35
You know, it’s just like, oh, you know, so? Yeah.
Victoria Volk 35:39
The reason why I asked about your father and stuff is because grief is cumulative. And it’s cumulatively negative. And I know you said that, you know, your grief experience with that was very different from your sisters. And you had mentioned something, and I just want to come back to it, because I think it’s important for anyone listening. And what you had said was, you can’t grieve something for someone that wasn’t there. To that effect, you had so
Brent Scarpo 36:04
Much well, and what I mean by there is that, you know, so much of our grief comes out of the memories and the life experiences that we had with the individual, right? That whole process, the good, the birthday parties, the vacations, the all that stuff, right. My father was in my life, like, I didn’t have those experiences I never talked to him. You know, I remember a form that says, so there’s this space that has no life experiences whatsoever with him. So there’s no memories of being able to say, oh, my gosh, I miss when he put me on his shoulders, and we went to the playground together. Now, I had already, I think, in my mind dealt with the grief of not having a father, right, and especially going in the 60s because, you know, look, when I was in first grade, there were 32 students, I’ll never forget this Urbandale elementary school, there are 32 students out of 32 students in 1968, I was the only one that came from divorced parents. Now, look at it, there’s probably one or two people that even have parents are still together the same number. So for me, I think I went through the grieving process of realizing that I was not going to have a father over the course of time of my teen years and early adult years. So by the time I learned the died, I had been through those seven stages, right? You know, the whole shock and denial and pain and guilt. And well, why don’t have a father and my mom and I, we had dozens and dozens and dozens of conversations about my dad. Right? So she was very open and transparent, authentic about that what it was about. So I think by the time I got to that I was good, because I had gone through those stages of what it meant not to have a father in my life. Whereas my sister hadn’t. You know, my sister was still holding on to the hope that he was going to come back. So when that hope
Victoria Volk 37:51
Yeah, and that’s what I wanted to mention. Oh yeah, please grief. Grief is the loss of hopes, dreams and expectations. And anything we wish would have been different, better or more.
Brent Scarpo 38:00
Well said. Yeah. My sister right there.
Victoria Volk 38:03
Yeah exactly. So that’s why I just kind of wanted to circle back to that. Why some. And because everybody’s relationship is unique and individual, right? So even, you know, that’s, that’s where two people in the same household can have very different experiences.
Brent Scarpo 38:19
I was shocked when she burst into tears. I was like, because the then my sister is a very controlling individual. She controls her emotion, very, very aware. Well, so not only it wasn’t that she cried, but I was like, you don’t cry. Like this is the Okay, I need to sit down. I’m sitting down. And, you know, she sat down. I said, Okay, we got to processes a little bit. So, but to your to what you just shared? You’re absolutely correct.
Victoria Volk 38:46
And you said something there. And I want to highlight this too, is that at some point with grief, either we implode or we explode. And so that is full expression that unexpected expression of grief could have been years and I were not analyzing or judging but I just to give people an understanding of why that could happen. Or where that comes from is when we spend so many years stuffing, stuffing, stuffing stuffing, we either implode or we exploit either our health deteriorates, or we outwardly express it with anger, turning to food or drugs or alcohol or relationships, things like that. And so I just wanted to, to highlight that too, for people listening.
Brent Scarpo 39:28
Yeah, I agree with you. 100% I think I think even in my two years of my grieving I there was not drugs or anything like that. But there. I think we all adopt certain behaviors and an effort to deal with, you know, whatever particularly is happening in our lives emotionally, especially as it relates to grieving. So I think we all have that. It’s just, you know, to our earlier conversation, this is why I say don’t do this alone, right to isolate yourself and sit in the dark with the lights off and just mourn over the person that you loved. I mean, I remember are, you know, it was so telling, I remember when my mom passed, right? And then you know you we have a number we call, you know, the come and pick her up. And it was just such a great experience because it was my grandmother, my sister and my mother. And the two gentlemen that came to take my mother’s body, you know, we’re just sitting there like, I’ve never done this before. And he said, Listen, you know, command make a suggestion. I said, sure. He said, Why don’t you spend some time with her, but then I’m going to suggest that maybe you go into the bedroom, because what we have to do to prepare her may not want may not want to be the last memory you have of her. And I was like, I got it. Right. I seen enough movies. And I was like, okay, yeah. So we did our thing went inside the bedroom, right sat there for about 10 minutes, he knocked on the door, he said, we’ve taken her and we will take care of her. I mean, he was so amazing. I mean, these are the two guys that take her to the morgue. That’s what they do. But how he did it was just so amazing. So by that time, then the nurse came in. And she was sitting us down talking all that. And so she said we’re which you know, again, when she said it was weird. She said, where is all the medicine and the morphine and such I said, Oh, I have it all organized over here, right? The next thing I knew, she took out this garbage bag. And she started going rifling through our stuff, what we’ve paid for in the bag, taking the pills and the morphine. And I was like I said, scuze me, what are you doing? She’s Oh, we have to take this. I said, No, you don’t. I said, that’s our stuff we paid for? No, we have to take it. When you sign that you are going to do hospice, this is part of the process. I said, Well, you really need to explain yourself. And she sat me down, she said, because we have so many instances where the husband loses the wife, and then they make the call. And we come back to two bodies. So we’re going to take away everything that may allow you to cause harm to yourself. And then she gives you the numbers of the counselors and the group therapy and the chaplain. Right? What a learning curve. What I was like, wow,
Victoria Volk 42:17
In my end of life, doula training, that was one thing that wasn’t said, actually.
Brent Scarpo 42:22
So I have a job, I would add that
Victoria Volk 42:26
The one thing that was said was as the loved ones, and the person that’s trans going to be transitioning, you can choose to wash their body, right? And you know, as a person dying, you can choose if you want your body washed or not. And do you want your whole body washed or just your face? Or you know, and I think that’s where it’s not. I think we’re so afraid of the dying process in general, I think hospice actually gives an opportunity to be a part of the process.
Brent Scarpo 43:02
Oh, absolutely. I mean, I think that’s, I mean, I, in the two years, I did the glue therapy and such I remember being on it was some kind of, well wouldn’t be a webinar, but they were able to put it together. But I remember whoever invented hospice, they were doing this talk, they were one of the guests, and it was just fascinating to hear this person back in the day. Because I was really in it to win it. Yeah, at that time. I was like, okay, you know, I’m going through this process, I, you know, didn’t become a grief counselor, per se, but we took courses to allow me to at least help facilitate and, and such. So it’s a well, it gives you that ability to be part of to be proactive, versus we can just come to a nursing home and we go and visit her for an hour each day. And then we come home and we live our lives. But to me that would just have added more angst to the grief process for us. Had we chosen that route.
Victoria Volk 43:59
I’m going to share something too, just because I have a podcast episode coming out soon with Ken Ross. And by the time this airs, I’ll link to it in the show notes. But Ken Ross is Elisabeth Kubler Ross is son. I think who you’re talking about is his mother. She Yes. She was the pioneer.
Brent Scarpo 44:19
Yeah yes, yes, yes. Yes, that’s exactly right. Your app. I love it. I love the synchronistic moment that we’re having right now. You’re I couldn’t pull it. You’re absolutely correct. You’re absolutely I remember so well.
Victoria Volk 44:32
She was the trailblazer for hospice and palliative care. But actually, you said to the seven stages of grief and she’s known for the five stage five stages. Exactly right. But it’s actually not five stages. It’s actually she talked about 10 different emotions, because really, they’re not even stages. They’re kind of like these, like an emotional scale that doesn’t go in like this linear.
Brent Scarpo 44:57
No, it’s yeah, you’re absolutely right. I You know, I mean, because of the two years I spent, I mean, so to your point, ironically, we were able to bring this all together. Yeah, it was the five. And then, you know, as I continued to do research, it was like the seven. And then you know that this is not, you know, this is more like, what someone would call it, it was a universal roller coaster where you go up and then to the side, and then you go back again. And then you then you get to the top and then the roller coaster goes in reverse and you’re one and then you go to seven, then you go to the three and yeah, it’s all individualistic.
Victoria Volk 45:32
She her work. And Ken and I talked about this, too. It’s there’s so much more to her work than that. It was talked about so much at one point, she just didn’t even want to talk about it. Like it was like, that’s all anybody like social, like the media. That’s what everybody latched on was her brand. That was her. And her work was just so much more than that. I can imagine. Yeah. So anyway, I just
Brent Scarpo 45:58
Want to listen to that. I’m excited. You have to send that to me.
Victoria Volk 46:01
Next, that’s next week, Tuesday. It’s coming out. Oh, nice.
Brent Scarpo 46:04
Okay I will be there. Actually, not
Victoria Volk 46:05
Next week. Tuesday. Today’s Monday, tomorrow?
Brent Scarpo 46:09
Yeah, okay, I got I got it on my list of things to do.
Victoria Volk 46:12
Okay so back to you. And I just, I’m going to share this because, and I meant to share this earlier when you were talking about red balloon. And we’ll circle back to that. Because I had had a medium psychic medium reading for the first time earlier this year. And, and it was my dad passed away when I was eight. So it’s been well over 30 years. And I have never had a reading. And so one of the things I’d asked for after that reading, which was I think in April this year, if I’m remembering correctly, just maybe two months after that. I had asked for a red balloon. Oh, oh, I did not get it. I did not get it or see it or be open to seeing it until you submitted your application to be on my podcast.
Brent Scarpo 47:08
Oh, my goodness Well, this, I curious if you’re open to this, you don’t have to share? Can I ask who your meeting was that we who did reading
Victoria Volk 47:18
Siri Bernsen? I did a podcast interview with her. She was on my podcast to.
Brent Scarpo 47:24
Okay, so so we’re really gonna have a synchronistic moment here. So one of the one of the reasons but so we’re in I live in Warren, Pennsylvania. And so we’re really close for about maybe 20 minutes away from the New York state border lines. And there’s this little town called Lily Dale, New York. Lilydale has been around for years, it’s considered one of the top 10 Psychic towns in the United States. And my mother and her best friend were always go there. You know. I mean, they’ve got the mediums, they’ve got the psychics, all that. And now they do workshops, and they have conservatory. I mean, it’s just incredible. So my mother was very much into it. So we share this. Fast forward, I moved to California. And, you know, I look, I’m a believer in many paths, you just have to prove it to me. I mean, seriously. And this is also featured in my book. So there’s a whole thread. But a really good friend of mine said she’s like, you know, look this guy, you know, his name is James from Prague. He is this evidential medium, and, you know, I met him recently. He’s, I think you really like him. And so long story short, you know, James on Prague, who’s written 10, New York Times best seller books, you know, in the late, probably 80s, early 90s. He was the he was the guy, he had his own talk show. I mean, just phenomenal. But he at that time was just, you know, this guy that was doing, you know, like, to your point, he was doing readings, and and she called my friend, she said, Oh, he’s doing this gathering, let’s go. And you know, it’d be these gatherings of, you know, four or 500 people, he would do samplings and then, you know, people would hire him to do readings at his home. So I signed up, I signed up what the heck, I you know, I was it was fascinating. So, this was in, let me see, if I get this right here, maybe for like three minutes, like around 1990. So I do my reading, right? It’s all tape recorded and such. And it was phenomenal. It was phenomenal. Because he’s an evidential medium, and there are cons and there are real people. There are scams, and I do believe people have gifts. But what was really interesting is that he I pulled up in front of his house in Hollywood, and he lived in a city area of Hollywood is in East Hollywood. And I just sat there I was like, Oh, this is going to be really, you know, kind of deal you know, and so, and my father had passed by this time and my mother had moved to California. So I saw go up. I knocked the door here. because at the door, he’s a short little man with a mustache. And he said, Oh, come on, can we can manage to get a glass of water? This is pre computers, right? Because now it’s a little difficult in terms of authenticity, because you know, everyone blames psyches for googling people, right? Because we have, we can do that. Now. There was no Google, there was nothing. There was no computer. I mean, very little computers. So we sat down, we’d like to kind of we do the prayer. And he looks at me, he goes, he goes, Are you a little nervous? And I said, Well, I said, I’m open to this. Trust me. He knew about Lilydale. He said, Well, your father’s here. Well, that was the last person that I thought was going to come through. I was like, you know, and he’s saying to you that you sat outside for about 20 minutes, because you’re worried about what would happen if your dad came? I sat outside for 20 minutes in the car thinking that very thoughts, right. And then he kept he kept saying things that, like nobody knew, like nobody on the planet knew but me. And to me, it was really interesting, because clearly in the spirit world, there’s no sense of time. Because your dad, he said, Oh, my God, your dad’s laughing. Was he laughing at? He says, laughing because, you know, he saw you sneaking out the bedroom window and sitting on the roof, looking at the stars. Will. I did that when I was seven. But they divorced when I was four. I said, Well, how does he know that? He said, Oh, time is, is there’s no such I was like, and nobody know I’d never even told my mother. I used to do that. Right? Well, then we get done. And he goes, we’re in the middle of and he said, Hey, do you need a job? I said, Excuse me. He thought my 13 foot Indian guy just got in the front of the line that the people are they’re here to see you. It sounds so sweet. Give you a job. Let’s talk about afterwards. I became James on Pogs first personal assistant for two years. So go read that. Yeah, my, my path has been very interesting. I mean, I remember the last. I remember the last appointment, because then I was going on to do Shawshank Redemption, right? And had to put my notice, and in the last appointment, he’s always nice, someone coming. It’s okay. I’m gonna go take a walk. And so there’s a knock on the door and I open the door and there stands shear. And she’s like, I have the right place is this changed on Prague? And I said, Oh, Michelle.
Brent Carpio 52:22
Dave, I said, Yes, you do. And she, she said, she had a jaguar. She said, It’s my, it’s my car safe out there. I said, Oh, I said, I’ll watch it. Don’t bother. So got her in Saturday down, got her some water. James came, took her upstairs did her thing. I watched a jaguar. And that was my last last time working with him. But for two years, you know, I worked with him. And, you know, he taught me and you know, I experienced all of that. So yeah.
Victoria Volk 52:53
So do you feel like, I mean, intuition, like, as a kid, like, did you have, you know, worked on it. But you know, so many of us, and especially when we’re grieving or in grief, we it’s really hard for us to tap into our intuition.
Brent Scarpo 53:10
Well, it’s okay. It’s not hard to tap into it, because it’s always there. Right? What’s difficult is believing that you have our brain gets in the way. Oh, we all have it. I do this with my life coaching clients all the time. So I’ll give you great examples. Because this is what I try to do is, is that they’ll hire me and I said, Well, you have all the answers. You’re just not listening to him. They’re like, What do you mean? I said, No, no, you do we all do. But how do we choose to listen to we choose? Look, I remember when James had a reading, and he had this guy. And what I loved about James is when he if he says it’s you, and there’s a woman here that has a pocket of coins that you use to collect, you know, and he will not deviate. Right? If the guy said no, that’s not me. He goes, No, it’s you. Right? And I remember this one time this guy Nope, it’s not me. It’s not me. It’s not me. It’s not me. We get done two hours, right? People are like, you know, all over James and such. And I remember seeing the guy off to the right. And he waited for probably good half hour and release. He comes over and, and you know, James and he talked he said, listen, all that really did happen. I was just afraid to say something. So to your point. Yeah, you know, this is in the book as well. I knew my mother was gonna die at a young age. I’ve always known. I’ve known since I was 13 years old. I didn’t share it with anybody. You know, it’ll be the fact in the book. And this podcast is probably the first time I’ve said it to a few people wanted to speak but I remember my mother and I got into an argument. And I could see things so since I was like six years old, like I could see the future. I you know, those those sort of premonitions. Like I would just like know things about people. I would it was just the scariest and oddest thing growing up in a small town in Warren, Pennsylvania, but I just kind of kept it to myself. of my mother and I was 13, we just moved to this new house. And I got a huge argument with her nice mad and I ran out the house to go across the street to play with some friends. And I got halfway across the street. And I remember getting to the other side to the sidewalk, and I just collapsed. And I just burst into tears, you know, and I knew I could feel this like, because I heard this message saying, you know, you need to be kind to your mother because she’s not going to be around long. And I like I saw her death I knew was gonna be young. And I literally that moment change. We had a good relationship, but my respect for her. And my devotion really to her had really changed because I really believed that she was gonna leave at a young age. So then at 33, when I woke up at three o’clock in the morning, and I said, I heard the message, she got cancer, I was like, This is it. Now, though, I will say that when I went through the process with her being a primary caregiver, I was fully believing that she was going to be cancer, because I don’t think anything’s set in stone. I think how we interact our energy what we do, can we change our destiny? Yeah, absolutely. Nothing’s written in stone, kind of deal. But, you know, that’s what I use. That’s why I talked to you earlier, I said, you know, I do these intuitive readings for clients before we do my four month program. And so you know, something I want to offer your audience. So, you know, if you text, the word voices, or voice with doesn’t matter, whatever works, just texted to me at 760-835-3327. Again, just text voices to 760-835-3327. As long as I’m alive and well, and six feet above ground, I said, I will text you back. And this is a complimentary intuitive reading. It’s what I do for all prospective clients, but just for people, because I want you to have something and I’m about I’ve plotted this Excel spreadsheet, I just did three this past two days. I’m about 86%. Correct, right. And what we do is, you know, it just whatever comes up, and for me, I share with clients or four things that come up the good, the bad, the ugly, and the beautiful, because that’s our life. Yeah. That’s our life.
Victoria Volk 57:19
There’s so many different ways I could go from here. Not sure what’s to go. Maybe your intuition will lead you lead this conversation where it should go, because you’ve you’ve given you’ve given a tip, like don’t you know, for Grievers is to not grieve alone. And that’s not too long give somebody one of the best pieces of advice you ever received, while you were grieving was,
Brent Scarpo 57:44
I would say the best piece of advice that I received when I was grieving. Because I got so many I would say, here’s what I’ll say. I remember when I was doing the grief group and this woman, this was at a hospital in Glendale is a couple miles down the stream, this one was incredible. I don’t even know she’s still with us. But I went and I went for my first group, right? And so I’m fresh off the death of my mother, right? So a lot of you who might be listening are fresh off the death of a loved one or a person that you’ve lost. So I sat there and I was nervous. You know, I mean, I was a former actor and such, but I was like, this is the real deal. This is not acting, this is the real stuff here. And so she said, Hey, welcome, everybody. You know, this is our Tuesday night, you know, seven to nine lalalalala? If you’re new, if you don’t mind, can you just raise your hands? I was like, my hands, she says so we’re just gonna, you know, just gently I mean, her words wonderful. I mean, I’m an English major in communications major was in jelly go around the room, if you just if you’re open, just say your name, and maybe, you know, a sense of why you’re here. Right? I was like, Okay, so there’s about five or six of us that were brand new. And so I was in the back. And I just remember listing 12345 And they got to me, and I was in this trance, because I just say, like, all the feelings and emotions about my mother were coming up. And she said, you know, could you share your name? And I didn’t hear like, I didn’t even see her. And she said, Sir, could you mine? Are you okay with sharing your name? And I was like, Oh, I’m so sorry. I said, Yeah. I said, my name is Brian Scarfo. She said, Are you open to sharing with us why you’re here. And I took this moment. And I just went through the entire two and a half years of caring for my mother. And I said to her, I said, you know, I’m here to do on a full time basis. What I’ve only done part time and that’s finally take care of me. And just tears streamed down my face. And I remember she came over and she put her hands directly on my shoulders and he said that’s why we’re all here. We are here to finally have the opportunity to take care of ours. selves, and what this journey is about and to give permission to feel to give permission to look at the loss that you just went through. And so I think my advice to you is just to give you permission to go on this journey, to give you permission to take care of yourself full time, to give you permission to be able to seek out those resources and say to the people that are pulling you in different ways, no, no, mommy’s viewing, mommy, Daddy’s gonna go to the scoop. This is something I have to do. And give yourself permission to take care of yourself, and do for yourself, what you did so wonderfully. For the person that you cared for?
Victoria Volk 1:00:47
Well, and in the process, especially if you’re a parent and have children, you’re setting an example of how important that is,
Brent Scarpo 1:00:53
Right? All modeling the behavior.
Victoria Volk 1:00:57
What has what has your grief taught you?
Brent Scarpo 1:01:00
Well, it’s funny, because I was vacillating between two words of wisdom, here’s what I’ll share with you. What it’s taught me is, because halfway through the process, this is the private number two bits of wisdom, she said, and it’s just so true. And somebody was having a particularly difficult time. And she said, look, she said, this is hard work. I’m not gonna, I’m not gonna mess around, she said, but I am going to make your promise. She said, Because I know a lot of you’re feeling like you’re just this train going through this dark tunnel, you know, that has no light. And that just keeps going and going and going and going. And you come week after week, after week, after week, feeling pain, after pain, after pain, but she said, Here’s my promise to you. If you continue to do the work to get on the train, to go through the dark tunnel to feel the pain, I promise you, at some point in time, you will see the light. And then the light are the gifts. And those gifts are being sent by the person that you’re grieving over. And you’re going to open up those gifts, and it’s going to be pure joy. And it took about two years. But all of a sudden the train came out. And I saw the light. And I saw the gifts, and I opened them up. And I felt the joy.
Victoria Volk 1:02:23
I’m going to ask you a question. Just intuitively, I want to know the answer. But I think it would be helpful to others listening. If I would have known you then and even a year and a half a year into their group you’re going to and I’m not bashing group supports systems or group programs. And by any means I think you found support in it, it helped you. I’m not saying that. They’re They’re wonderful for people. But if I would have said to you do you want to work one on one with me and I can help you in eight, eight sessions. What you’ve worked through an eight year in two years, would you believe me?
Brent Scarpo 1:03:09
Well, I actually did it. So when hospice came, they said look, you we they give us all these kinds of resources. So there’s this group, and then there was one on one. And I here’s what I knew. Here’s what I did. So I was a casting director at the time I was casting Shawshank Redemption, Air Force One, the last movie I cast it for my mother passed away was Matilda. Right? I had 3000 children and worked with funniest guy named Danny DeVito. So during then, this is what I did. During the two and a half years that I was my mother’s primary caregiver, I opened up a separate bank account. And I put enough money away for every month that I was her caregiver and that she had cancer so that I could take that much time off.
Victoria Volk 1:03:54
I know another great tip,
Brent Scarpo 1:03:55
Another tip. Another tip, but I remember just saying you know what, because I thought if this should go wrong, I’m gonna have to be able to deal with some stuff. And I don’t know if I really want to go to work and pretend to cast children and materials commercial and be happy about it. So I had two and a half months of salary. And I took a year and I didn’t work at all. I took it when I say took care of myself full time I wasn’t playing, but I planned it. That’s why I’m telling people this is the biggest tip is you got to plan for this ahead of time. The red balloon was done years and years before she you know, I had the dream that she had cancer. I mean, all this can be planned and you can get the joy out of that. And so I did the group. We met once a while I did two I did twice, and then I was so impressed with her. I went to her once once a week right now. I went there once a week for about a year. Now if you say to me You know, in eight weeks if you meet with me, I guess it depends on what you’re saying to me and eight weeks you work with me your grief will be over I,
Victoria Volk 1:05:09
Yeah, I probably went over your grief won’t be okay. Okay. It’s just that every emotional thing that’s keeping you bogged down and keeping you stuck and keeping you from living your fullest potential because you’re, you’re emotionally incomplete in some way. That would be resolved.
Brent Scarpo 1:05:25
Yeah I would say. I mean, look, I have a four month life coaching program. And I specifically did four months, because, you know, I worked with a lot of people with addiction such and those these 90 Day and 3d programs, you know, scientifically, we’ve discovered that they don’t work, right, it takes at least 90 plus days to change a behavior. It just does. I mean, all the research is out there, whether it’s an emotional, psychological, physical, but whatever the case may be. So you’re looking at two months, I knowing back then maybe I would have said, Yeah, let’s go ahead and do this. But I would have gone on probably a while because I made that plan. But I’m of the proponent that, you know, if you’re going to do something one on one, just because of all the research I’ve read, you want to do it for at least excuse me four months. That’s why do my program is 21 sessions, right? 21 sessions, and I guarantee you’ll be transformed in some shape or form. I’ve got all the testimonials on my website, which is Brent scarfo.com. And because it just takes that much time to get you know, it’s like the onion, you know, you peel back the onion, there’s always layers and layers and layers and layers. So I hope that answers your question.
Victoria Volk 1:06:35
No, I personally was just curious what your answer would be. Because I find though, in because Grief Recovery, the Grief Recovery method is evidence based, right, Kent University did a study. And what I’m finding is that it can be really difficult for people to believe that it’s possible even that you can’t, you know, I mean, that you can’t even get to. So like someone who’s going through grief, like going to a support group, where there isn’t necessarily action, like you’re not taking action. And I some, and I think too, it depends on the facilitator. But if you because I’ve heard many people say to me about the group group group sometimes is that you almost feel worse when you leave, because it’s such a heavy
Brent Scarpo 1:07:26
Look. I agree with you. I think I’ll give you an example. In fact, I may, I may carry you with me, because I’m gonna go let the let the dog in, is, you’ve got to figure out what device works best for you. Right? It’s it is I’m working with a client whose mother committed suicide. Right? And so it’ll be a year two years ago, yesterday. And, you know, I said, you know, what are you doing to deal with your grief? Right? And so, she’s like, Well, I started this group, but I don’t know if I really want to go to therapy. I was like, Okay, gotcha, right. Well, I know him well enough, because I’ve worked with him three times. So if he does for him, if he does therapy, he knows he’s gonna have to get to it. He’s not ready. He’s not ready. Let me just sit in the back here, you know, that he’s also a man. Right? But he’s sensitive enough to where he’s open. Because, you know, men grieve differently. They like, you know, they’re, they lose their child. And two weeks later, they’re back at work. And the wife is like, what are you doing? Right? Because women grieve with expression and emotion and feeling and men keep it inside, they have to be busy and doing things so that they can process what is that they’re feeling? So I think you bring up a really good point, not only choose not to do it yourself, but choose the venue and the way that works best for you. Right, maybe it’s therapy one on one, and that’s it, maybe it’s great. It’s group because you like being around people and such. Maybe it’s a combination of the two. There’s probably modalities out there that I’m not even familiar with. I know. Well, no, I mean, I know. I know, people that have had Reiki they’ve had the, you know, the energy they’ve had, you know, I knew one woman who she really didn’t do therapy, per se, but once a week, she did something for herself. So I got a massage, I got a facial, I you know, I just did something to make me feel better, you know, because the other six days she was grieving, you know, so that was that self care that she was able to do for herself, rather than find herself plummeted in the depths of, you know, grief so low that she couldn’t get out of it. So yeah, I think, well, here’s a great example. So my client goes to group, right. And I said, How’s that gone? He said, Because I don’t I don’t know. You know, and he’s, you know, this is this is something brand new to him because he’s an only child. I said, What are you? Are you getting something out of? He said, Yeah, I said, But it’s just I just feel like I’m unique. So what’d he mean? He said, Well, other people, you know, they’ve lost a child or you know, the grandmother died or their grandfather died or the husband died or whatever. It’s like, my mom died. She killed herself. Right? I said, that’s all you gotta say. So then I Googled, and I found a group that is specific. Everybody, their, their, their lost, loved one had committed suicide. So he went to that. And he said, That’s a world of difference. Just a world of difference. He said, thank you.
Victoria Volk 1:10:33
Yeah, and I think there can be dangers in that too, though, because we can, we can definitely learn from all people, people that have experienced all types of losses. And I think that’s kind of what we do, too. It’s even if, you know, depending on what your loss is, you might say, Well, why am I feeling so bad? They lost their child or, you know, and so we naturally can do things like that to that. That’s where, again, I think it depends on the group and the facilitator.
Brent Scarpo 1:11:01
Absolutely Exactly. Right. I think I was lucky. I mean, when this one was, I mean, she was, I wouldn’t say world renowned, but she was state right now. Like she was it, you know, and so, to your point, I think you’re right is like, I mean, he went to the one group and didn’t like it. So I was like, Well, don’t stay here. But I’m trying to, I don’t know, if you if this is not working for you, we just there is a path, we just have to figure out which one it is for you. Because not all things work for all people. We just had to figure out what it was. And then through my work with him, we were able to find it. And you know, he did that for the first year. And then he was fine. He’s like, you know, I’ve done it. I’m doing this. And, you know, I’m working now with him for because I kind of worked with him at the tail end of that. And I’m working with him for another year. So I’m doing something much different, you know, because now we’re in year two, we’re this is second year yesterday. So one of the things I said to him, was gonna do with all my clients, no matter if they’re going through grief or not. And I said, Okay, he said, I want you to attend this class. And so I said of the class, he said, really? I said, Yeah, I said, just just go to it and see what happens. Well, I think the greatest class any human being can take for all things is an improv class. I’ve taken dozens and dozens and dozens. You wanted to learn how to do sales, take an improv class, you want to learn how to ask out a woman or a man on a date, take an improv class, if you want to get a better your communication skills, take an improv class. So he said, I don’t know. And I said, No, it just, it’s free. Just go check in on it. So he went, and they Brian, do they bring you up on stage? And I said, just text me when you’re done? Well, it was done. I didn’t get a text. So I text him to get nothing back. Then finally, like, two hours later, he texts me said I stayed for the two classes afterwards. I said, Oh, I said, Okay. And then we talked the next day. And I said, What do you think he said, You know what, thank you for sending that to me. He said, My biggest challenge is I don’t think I’m allowed to laugh without my mom. He said, and all of a sudden, I found myself laughing. You know, and I almost felt guilty about it. But then I was like, maybe this is okay. Well, that was my mindset from the very beginning that my wife sent him, you know, but I think couldn’t tell him that. So now he signed up for the class and the course and, you know, making those transitions as far as you know, the various, you know, for lack of better word stages that he’s in when it comes to grief insights, because, you know, how do we learn to laugh without the person we used to laugh with? Well, it takes practice. You gotta have the right you know, so that’s not a grief group. That’s not therapy. Right. That’s an improv class. And I’m all about it.
Victoria Volk 1:13:36
That’s another great tip.
Brent Scarpo 1:13:38
Oh yeah absolutely. Everybody’s taking an improv class. Everybody, everybody, I took him when I was an acting school. And then about three years ago, I decided to take him again, for some odd reason. I went to like some really, we got some famous ones in Hollywood. But it was funny because I went, I said, you know, I’ve been to the American Academy of Dramatic Arts. I graduate for two years. He said, I probably will start like level five or level six. He’s like, Yeah, you’re starting all over? I am. He said, Yeah. It doesn’t matter where your past experiences. Are. We starting at the beginning, I was like, Okay, sir. So it was fine. I totally got it, you know, because the idea is to build this cohesion of a group of people that have the ability to speak and listen, listening being the most important part.
Victoria Volk 1:14:18
Exactly. And I just want to circle back to what we’ve been talking about with groups and programs and things like that. And I think that’s the most important thing to take away from this conversation is that to meet yourself, where you’re at, and what you’re ready for, and I think when you’re ready to hear it, you’ll be open to it, whatever it is,
Brent Scarpo 1:14:37
Yeah, there’s a lot of weight to what you just share. But there’s also then those people who, you know, maybe they’re by themselves or they’re isolated and such and so they just for some reason, the people places and things are in their lives to kind of nudge them along to the possibility that that’s the group that I worry about, you know, that may not have that support group or don’t have the ability to reach out or can’t ask for help those The ones I’m really concerned about the most. I mean, that’s the beauty of, you know, grief groups and grief therapy back in 1997 when my mother died, and now, you know, you can do this on Zoom, you know, with COVID. I mean, you know, when COVID happened, he was saying, is that no, we, we couldn’t get together, we had to do it on Zoom. And that was sort of his transition of not doing it anymore, because it just wasn’t the same. Right? It just was not the same. And a lot of people that, you know, especially people who suffer from addiction and are going through that COVID was, it’s been very difficult, because you and I are talking, we’re having a great time and such, but I still can’t hug you, you know, and having that one on one. So yeah, I, if you can, if you can get to the place of knowing that you need some help. And then you can get to the place of research in which we’re able to do in the confines of our home, which is great. We got this thing called computer, but then take the action step that I’m talking about, you know, to do the zoom or make the call or have whatever it is, that’s the most important piece, because that piece is what then tells you where am I in the process? What you know, versus I’m not going to do anything at all.
Victoria Volk 1:16:08
Yeah, and I think you’ll discover what you’re ready for in the process of taking action, right? Yes, absolutely. Yeah, absolutely. So what gives you the most hope, and joy for the future?
Brent Scarpo 1:16:20
What gives you the most hope and joy for the future? So it’s more of the word hope than anything else. So for example, this last year really, I’ve merged my life experiences in the entertainment industry with my life experience as a life coach. So you know, one of the greatest films out there is, you know, the Shawshank Redemption, I was one of the assistant casting directors when the best four months of my entire life. I’ve seen the movie over 1000 times. And so, you know, I realized there’s just so many great lessons from that film. And it’s the reason why it’s one of the top 10 films out there. And so, you know, I went through the whole film, and I came up with the 10 top lessons that one can learn from the Shawshank Redemption when it comes to life. So, you know, let’s go through a few of those. And because to answer your question, I remember when we had the 10th anniversary, and Frank had sent us a brand new poster. So I put it up next to the old poster that I’ve had for years, but I never really looked at it. And so I will tell you why. Shawshank Redemption is one of the top films that everybody to this day still loves is because of the caption of the poster. And this answers your question, the caption of the poster in the film was this fear will keep you prisoner hope will set you free. Fear will keep you prisoner hope will set you free. And so for me, it’s not what is it that I think is going to happen when it comes to what is it that I hoped for. But for me, it is the essence of hope. I think that’s why we’re having the difficulties that we’ve been having for the last 567 years. Right? If we’ve we’ve lost the ability to believe that there’s this thing called hope. And so when you lose that ability to believe in this thing called Hope, and what happens is fear takes over. Fear will keep you prisoner hope will set you free. I spoke at this one university one time and I didn’t know what the question was. But I remember responding saying, Well, the truth will set you free. Right. And I had this aha moment. And whatever the question was, you know, that was one of the answers is the truth will set you free. I said, But and let’s bring it back to the grieving process. Do you know who her cousin is? Right? I’m just saying this. This is like the Intuit I like I don’t know what’s about to come out of my mouth. And they all kind of looked at me. I said, the truth will set you free. But her cousin is the truth hurts. And typically the truth has to hurt in order for it to set you free. The grieving process, we’ve got to go through the dark tunnel on the prayer and the pain in order to receive the light and the gifts. Right. And so for me, it’s the the entity in the essence of hope to know that hope is always a possibility to know the hope is something that you can wrap your arms around to know the hope is always an option. And that you don’t have to live in fear. And you don’t have to bestow fear on other people. And you don’t have to generate fear, which I think we’ve been doing so much in the last five to seven years. Right that people have made their mantra about fear than their mantra about hope. So it’s not what I hope for. It’s that there is hope.
Victoria Volk 1:19:42
That’s a big part of this podcast is to show people that no matter what you know who you are in life, what you’re, you know, people of all walks of life have been on this podcast and the one thing that they every guest has understood didn’t want to at some point in their life was that hope? Like hope tomorrow could there is hope that tomorrow could be better, will be better, can be better.
Brent Scarpo 1:20:10
They all the above, right? It’s absolutely it’s it’s and we’ve lost that. And a lot of ways I think COVID exacerbated the situation. You know, especially when we want to be in sole control of our lives, right. And then something comes into our lives that you completely lose control. Right? That’s when you that’s when that concept of faith has been tested when your faith in hope is being tested. And if you lose that faith and hope, well, then you automatically go to fear again. Fear can hold you prisoner hope can set you free, one of the other. It’s a great scene in the movie. Right? And again, to your point I can because I remember sitting there watching the scene happen when Andy de France character, you know, is having a difficult time being in prison for all those years for something he did not do. Right. I didn’t sign up to lose my mother. This was not a group I volunteered for. It happened. Right? It happened. I’m part of a group that I did not volunteer for. I didn’t want to be a member. And I did not pay dues. But here I am. Right. And so his friend read, you know, starts to worry about him. And I remember just seeing, you know, the character attorney. So well, I guess it comes down to two things you could get busy living or get busy dying? Well, exactly. Right. I mean, when COVID happened, you know, two years ago, and I have a lot of clients, I look I freaked out on human just as much as everybody else. And then my clients were coming to me, my one client, she lost all three of her jobs in 72 hours that are all related to the restaurant business, three jobs in 72 hours gone. And I said, Well, you got two choices, right? And I said, you can either do the time, or the time can do you pick one. I did 168 projects on my place. And that two years, right, because my whole life like everybody else was just, you know, decimated on some levels. So you either get busy living or get busy dying, you know, you either get busy dying and live in the fear or you get busy and living and relish in the hope.
Victoria Volk 1:22:25
Yeah, and I think you turn on the news. That’s probably one of people’s biggest mistakes is turning on the news. First three minutes is nothing positive.
Brent Scarpo 1:22:35
And then another six hours of nothing positive. Yeah.
Victoria Volk 1:22:38
Right. One thing to chip away at your hope, just keep the news on,
Brent Scarpo 1:22:42
Right. It’s difficult. I know, I hadn’t watched the news for years. I’m not, I really haven’t. And then there was a certain time four or five years ago that I just I almost felt like I had to because there was so much change happening in such a high rate that I want to kind of be abreast of kind of what was going on. But I you know, I saw how it changed me but I also had to really modify how much I look at it now I’m back to not watching it. Because we can get it from so many other places and such but yeah, it’s um, you know, I always tell my clients, you create your own reality. Right? You create your own reality however, that reality exists for you and whatever choices and action steps you take is his what that reality is about. You know, one of the concepts of the the 10 Shawshank lessons is the opportunities can be seen everywhere. You just have to look and you have to listen, right? I mean, if you look at that movie, now, here’s a prisoner and he wants to build a library and the prison in 1947. The words like you can’t do that. It’s the wall write a letter to the state for the funding if you don’t have it. Right, he writes a letter for how many years? And then finally, they sent him a check saying please stop writing. Right? That goes back to for me, number three, you’ve got to be relentless, and you got to be tenacious in your life. Right took him 20 years to escape Shawshank Redemption with a tiny rock hammer. Right? He wrote one letter a week for years to get the books in the library. So we need to stay on course, find that support system, especially when we go through the grieving process because you’re going to have those peaks and valleys. This is why the two words exist in the English language. So when you find yourself down the valley, you have that support system that can help you and take you by the hand and get you back up on the on the hill or the mountain. I’ve only told this once in my life, this is interesting, but I’m looking at number nine, and that’s practice random acts of kindness. So for me, you know, my mother was having cancer and I just had to do something like I’d love random acts of kindness and but I was insanely busy. I mean, I was 24/7 with her. I was casting films. You know, we had ups and downs depending on what was going on in the process of her cancer. are. And for some reason, I’ve only said this twice, I decided that once a week, I would send money anonymously to a person that I found in the phonebook. Because my mailbox was down the street. And I picked up my mail there. And this is when you had, you know, you actually had phones that you put quarters in the US, you know, and I just, I remember, oh, no, it was inside, it was inside the post office site to look up an address. And I just had all these names of all these people. And I so I created this letter saying, You don’t know who I am synopsize And you don’t know who I am. You know, but, you know, I’m currently you know, assisting my mother with cancer. You know, we’re very hopeful. Again, I know that was in there. You know, I know this is not much, but I hope this brings a little sense of hope to your life. And I put it in $5 each time. And I did that once a week for the entire time she had cancer. And that was that was just a tool that I use for me. It helped me be hopeful. I was practicing a random act of kindness. It was something that I could do that was outside of being her primary caregiver. But you know, that’s just what I did.
Victoria Volk 1:26:06
Yeah, another tip. Yeah. Exactly. Is there anything else that you would like to share?
Brent Scarpo 1:26:14
You know, I would just say, you know, thank you for all that you do. Again, if you want an intuitive reading, it’s completely complimentary. I guarantee you that you have tools that you can take away from it about 45 minutes to an hour, just text me at 760-835-3327 voices. My website is Brent scarfo.com Bre N T, SCA rpo.com. You know, the book, the red balloons coming out Mother’s Day, I’m so excited about this. I’ve been working on this for 10 years, it is going to be a life coaching book. It’s about the relationship between my mother and I, it talks about how we prove that there in fact, was life after death. And if you’re interested in seeing the Today Show episode, you just have to go to YouTube and put in print Scarfo, the Today Show?
Victoria Volk 1:27:00
Well, I’ll put all of that in the show notes as well.
Brent Scarpo 1:27:04
Well, thank you so much for everything. This was wonderful. I really appreciate you and all that you do. And I know it’s really hard work doing this because I’ve been asked to do it. And I was like no, I feel like I just I know how much is involved. Maybe one day down the road because I think it would be something fun to do. But I You know, I’ve been on several and you’re you’re great at what you do. And I just want to thank you for what it is that you do for, for me and for us and for all those that are going through the grieving process.
Victoria Volk 1:27:30
Thank you and thank you for sharing absolutely all that you’ve shared. And remember, when you unleash your hearts, you unleash your life. Much love from my heart to yours. Thank you for listening. If you liked this episode, please share it because sharing is caring. And until next time, give and share compassion by being hurt with yours. And if you’re hurting know that what you’re feeling is normal and natural. Much love my friend.
Death/Dying, Grief Stories, Grieving Voices Guest, Grieving Voices Podcast, Pespective, Podcast |
Ken Ross | Rolling the Dice & Preserving the Legacy of Elisabeth Kubler-Ross
SHOW NOTES SUMMARY:
Ken Ross has a theory for the way he lives his life and, it didn’t come to be without the influence of his mother, Elisabeth Kubler-Ross.
Ken and I dig deeper into his life experience growing up in a home where grief, death, and dying were a daily part of life and the topic of conversation. His mother, Elisabeth Kubler-Ross’s first book, On Death and Dying, was the conversation starter for society to take a deeper look into the dying process and all of the feelings one goes through. She started a hospice movement and became known as the founder of The Five Stages of Grief™️, which we also talked about in this episode. Aside from his mother being the pioneer of grief and dying education, his father was a neuropathologist. It wasn’t unusual to have a human brain sitting at the kitchen table while his mother brought terminally ill children his age to the house for a visit.
Growing up around death, dying, and grief set the stage for Ken to understand the fragility of life and not live with regrets. His mother, Elisabeth, was also a huge proponent of living life outside of the box, as she very much expressed in her own life. One of her several final books, The Wheel of Life: A Memoir of Living and Dying, is the story of her extraordinary life as she prepares for death, in her words.
We also discuss Ken’s mission to preserve his mother’s work and legacy so future generations can learn, too.
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Victoria Volk 0:08
This is Victoria of the unleashed heart calm, and you’re listening to grieving voices, a podcast for hurting hearts who desire to be heard. Or anyone who wants to learn how to better support loved ones experiencing loss as a 30 plus year griever. In advanced grief recovery methods specialist, I know how badly the conversation around grief needs to change. Through this podcast, I aim to educate gravers and non gravers alike, spread hope and inspire compassion towards those hurting. Lastly, by providing my heart with yours and this platform, Grievers had the opportunity to share their wisdom and stories of loss and resiliency. How about we talk about grief, like we talked about the weather? Let’s get started. Thank you for tuning in to grieving voices. today. I’m very excited to have my special guest can Ross. He is the son of Dr. Elisabeth Kubler Ross, the founder of the ek AR foundation in 2006. And President and he’s also served on the board of the Elisabeth Kubler Ross center from 1989 to 2005. Ken was the principal care provider for his mother in the last nine years of her life until her passing in 2004. His responsibilities include handling over 80, publishers of Dr. Kubler-Ross’s work in 43 languages, public relations, copyright and trademark issues website maintenance, developing international Kubler Ross chapters, developing strategic partnerships as well as preserving her archives. While growing up he traveled with her extensively while on her numerous foreign trips witnessing her lectures and workshops. Ken has lectured on his mother’s legacy for hospices and various conferences in South America, Asia and Europe. There are several film projects that Ken is currently a consultant on including a major motion picture, a television vision series and various documentaries both foreign and domestic. He is a professional photographer by trade and he has photographed 102 countries. He is also the author of real taste of life, a journal by Ken Ross and Elisabeth Kubler Ross from 2002. And tea with Elizabeth, thank you so much for gracing me with your presence in fireside today. It wasn’t awful, but it you’ve led a very interesting and fascinating life, as has your mother, I started to dig into her book, the wheel of life and a memoir of living and dying. I felt drawn to that one of all of all the choices that are there out there. I think just because I have had recently gone through end of life doula certification, I think the the dying process and just the end of life experiences is kind of fascinating me at the moment. And I’ve picked some stuff out of the book that I would like to talk about at some point. But Sure, thank you, thank you so much for being
Ken Ross 3:03
my pleasure. That’s what I’m here for.
Victoria Volk 3:06
So let’s start with you. As I kind of mentioned at the beginning, before we started recording, we could make this whole podcast episode about your mom, there’s lots of content out there available about your mom, but I am curious and interested in learning about how having Dr. Elisabeth Kubler Ross, as a mom has shaped you into the person you are today. And the impact that Her work has had on your life.
Ken Ross 3:32
You know, you don’t see things as are happening, right? You never realized what’s happening as it’s happening. You have to go back and go, Oh my God, that’s why I did this. That’s why I did that. So, you know, at the time, I had two parents growing up who are doctors, and they both worked with dying people or dead people. My father was a pathologist. So my father was bringing home human brains into the kitchen, leaving them you know, because I had to go to new hospital next day. And my mom’s bring home day and people who are my age, sometimes younger, sometimes older, but you know, dying people coming through the house. human brains are sitting in the kitchen, it was very unusual childhood. And so you know, death was something we heard about, if not every week, every day, and we heard at the dinner table. And I met people who are my age who are dying, so certainly made a big impression. And every time I went on a trip with my mother, you know we’re meeting dying people backstage after our conferences and at the workshops and you know, people stopping over in the airports and so forth. So it was death death death made me quite paranoid neurotic about like every little bumping, no, no, I had on my body. But so at the time, you know, it kind of freaked me out because I heard about it too much. But it did impress upon me that life is short and precarious for many people. And even for people who live a full long life. It still seems short because I’m meeting people in their 70s and 80s who are dying in their Like Ken My God, like you know just a few minutes ago I was a kid like what happened like, life went by in a blip and so they’re like yo really go out and really think about life just don’t take it for granted. You know really seize this opportunity you have and you have beautiful opportunity with your mother to do things that a lot of people don’t get to do and kids don’t get to do so anyway, my dad had his National Geographics, and I thought Wow, well if life is short and precarious You know, this would be an amazing way to spend your life these photographers go out and see all these tribes and hang out you know of helicopters and climb mountains, they meet movie stars, that seems like an amazing way if life is so short to go out really live it big. And I was very shy very quiet. And so I thought oh well with a camera I don’t really have to talk I can still be in my shy comfortable space. But I can go out and photograph landscapes nature and meet tribal people and and that would be amazing way just to see the world which is kind of a mysterious place. So I set out to go to 101 countries and that’s what I did. But I studied banking just as a backup because my father was a traditional family guy. And he didn’t want me going off on some flaky concept of being a National Geographic photographer. So state of banking like a good Swiss boy my mom was Swiss. So I thought well that’s my backup you know I can be a good Swiss banker but what I really wanted to do was travel and take photographs and my mom really pushed me to be like a gypsy basically and live my life outside the box. Whereas my father wanted me in the box so constant struggle between the parents right and my father did not believe in life after death my mother did so a lot of conflicts growing up between the parents because you respect them both. They’re both geniuses know their stuff, but you know, you’re kind of pulled in two directions at the same time. And that was a little challenging.
Victoria Volk 6:55
I want to circle back to that the opposite belief system but first I just want to say that I like just when I was a kid, I wanted to be a National Geographic photographer. Oh, and I was my dad was diagnosed when I was six with cancer and I watched him you know slowly decline over the next two years and he died when I was eight and so I had that first early exposure and people my grandma had died too in that time of cancer and so I had been exposed to death and dying and you know, maybe not really not necessarily understanding the the fragility of life how fragile it is, but are really grasping that idea but I grew into that wanting to this urge to travel was in me if it wasn’t a National Geographic photographer, I wanted to be an airline stewardess. I mean, you know, like the idea was to get out and get away and traveling. Yeah, yeah, participate in like yeah, see what else is out there beyond my own four walls? No, did you actually shoot for National Geographic or that was just something that sparked your
Ken Ross 8:03
I wanted to be a National Geographic, you know, kind of photographer I wanted to go out and travel like hardcore. Yeah, get into, you know, remote villages in Africa and South America and, and so I didn’t shoot for them. But I have sold them a number of photographs over the years as stock photography.
Victoria Volk 8:19
Can I ask then how that experience because when you started doing that, and you were on this excursion of 101 now 102 countries, how did that morph into the work that you’re doing with death and dying? And how did that actually in being exposed to those different cultures? What have you taken away from what you’ve learned,
Ken Ross 8:40
so I was doing photography as a hobby as a kid, I was shooting concerts and, and things like that, and traveled with my mother. And when she was given a workshop, I would go take pictures, right? So because she is working for 810 12 hours a day, so I go shoot and at the end of the day, I’d hook up with my mom and then we’d be meeting you know, shamans and Eskimos and fortune tellers and Zulu witch doctors and you name it because my mother loved indigenous people he thought these people really get life and death and are not like hung up on death and they really see it everything as a circle. So she really wanted me to meet all these people, you know, and I saw tables floating in the air and everything you can imagine that’s all building up inside of me. And I’m traveling with mom and going off to college and I didn’t know what I wanted to do. And I was like, Well, you know, bankers realistic but photography is really fun, so and getting exposed to death more and more. And I’m still traveling with my mom even after I got out of school and trying to figure out which way I was going to go. So anyway, I did become a professional photographer. I moved to Australia and then moved to New York and I ended up living in like 13 cities and poor countries. No, because my mom was never like go out and be a gypsy and be crazy and you know, not only live outside the box, but just realize there is no box right? Let’s do it all. And, you know, being a photographer, I’m climbing mountains, I’m going To discos in Beirut, I’m hitchhiking in Zimbabwe, and really living what I think is a fantasy life for most people, even with no training as a photographer, I just did it. So that was great. So as as all about counting your fears, right? And having the perspective that life is short, you know, don’t live your life with regrets. So most people, I think 90% plus of their regrets are things they didn’t do versus things they did do, right. So we have to remember like, all these regrets are things we didn’t do. We lived our lives fear based, we were afraid to tell these people we love them. Embrace people we had fights with you name it, you know, the time to make amends is now the time to take chances. Now, you know, I just went to Iraq for a vacation, right? I mean, that’s a little unusual, but I’m challenging my fears. I’m challenging the preconceived notions of Iraq is a dangerous place. You know, I’ve read about it. I’ve embraced different cultures. I love diversity. And, you know, I just found my rhythm and just I went there, I had a great time, I had no hassles. And so just, you know, and also seeing my mom and the press, I just see how much the press kind of misrepresents things, they focus on the negative, you know, and when I go out, yeah, I’d have an amazing time when I travel, like, I’ve rarely had any problems in 102 countries, I’ve been to nine countries, the Middle East, and done all sorts of crazy things, and met strangers and ended up sleeping in their house in Africa and Asia in different places. And I never had a problem, really. So you know, I just don’t focus on that negativity that we’re fed so much, like, we’re just fed all this fear. I hate that. Because I just find like, a very positive experience. It’s not meant to be perfect. But you know, you can take any experience, and you can find a positive outcome from it, even from death and grief, it can help you grow and learn and embrace love. Even more and more, I did that for, I don’t know, maybe 2530 years. And then, as you may know, my mom’s house was burnt down when she was trying to start a hospice for abandoned babies. And so I brought her down to Arizona, and I ended up taking care of her for nine years, that was crazy, difficult experience. And then after she died, we had people writing us everyday from around the world. So again, it wasn’t my plan. But, you know, after taking care of my mother, I was handling all our business affairs, realizing how complicated it was, and how a lot of people are, you know, misrepresenting her work and abusing her and cheating her and, you know, all the stuff that goes along with the theme and having a brand. So as a son, it really bothered me. And so I began working with all our publishers, and all the press and all the stuff that I wasn’t used to and had no experience with. And then I started the foundation, thinking the foundation would do all the work and get to be a photographer. So now it’s been 16 years or so. And I realized that’s not how foundations work. still kind of figuring out how foundations work after 16 years. But yeah, I’m slowly getting better at it. And last three years been great time for the foundation. We’ve grown a lot internationally as been some nice big press articles on mom, they’ve named a couple of streets after mom and hpcl just had a nice memorial to mom, they have a whole exhibit on her and their headquarters in Washington. And then American Journal bioethics just devoted his entire issue to her that’s donated all my mom’s papers to Stanford are going to develop a digital library. So very exciting. And mom’s legacy, even though she’s not around. Yeah,
Victoria Volk 13:29
I, like I mentioned before we started recording, it’s like you hear all the time on TV and the news and different things, it’ll save five stages of grief, you know, and that’s what people seem to latch on to. And in all of her amazing work that she is accomplished and did in her life. And I was just listening to something this morning that talked about, was talking about, it was about mindfulness. And the one thing that in mindfulness at the end of life, it was like research that was done, and they interviewed people at the end of life. And all these people, every single person had said that their greatest regret was that they had not lived true to themselves, right? And
Ken Ross 14:09
you’re not driving the right car, you’re not the right neighborhood, or the right friends or whatever I like, you know, it’s like society imposes all these guilts and fears and expectations on you, which are so artificial.
Victoria Volk 14:21
And there’s this part in her book, where in the wheel of life where she had talked about where she quit her job because she had decided to work with dying children. Someone had just asked her the question, why don’t you work with dying children? She’s like, you know, good question. Why don’t I you know, but she had quit her job. And then that’s what really led her because they wouldn’t allow her to kind of counsel people who couldn’t pay. And she says, I was not about to stop that practice. If you hired me, you also get what I stood for. There’s like conviction that I you know, I feel that sense of conviction and what she said there and that’s what led to her doing the lectures. But that’s what I also hear what she’s kind of passed down to you and that nope this is what I’m going to do I don’t want to live put myself in a box I don’t want to limit myself and that’s a beautiful gift she gave you I think
Ken Ross 15:11
yeah it’s been amazing it’s been exactly my fantasy when I was a kid I like did everything just about he could possibly do that’s you know the cause it reasonable what’s up so yeah I feel like you know I want to live a life that I wouldn’t mind doing 100 times over and not be bored ever you know you want to live that dream life right and it’s never going to be a dream there’s going to be heartache and sorrow and betrayal and everything else but you know you embrace it and just move past it
Victoria Volk 15:42
so what do you think do other cultures have a one up on us when it comes to death and dying then than we do here in Western society?
Ken Ross 15:50
I think it’s kind of like 50 years ago my mom you know began our official work with death and dying is that we hide death in a closet right now old age homes so we can like not see people get old because we don’t want to deal with it just stick them in a home and hide them away so you know we don’t have to face it you know and funerals you know used to be at home dying people used to bring your uncle home and leave them in the living room for a couple days so that you could see him and have that death be a part of your life and now you know it’s like oh we’re gonna hide them in the hospital we’re gonna hide them in old age home we’re gonna hide them in a whatever a hospice whatever so that’s the problems that we hide death right?
Victoria Volk 16:30
Yeah they would even take pictures with those deceased loved ones
Ken Ross 16:34
you know and they and they make a body so look like they’re artificially they had the rouge and pretty up to here and you know make death look like it’s they’re just sleeping You know? So that’s the problem I was problem 50 years ago and it’s still the problem 50 years later like in other countries, you know, death is a part of life you see it, you know, in front of you. They don’t really hide it the way they do in Western culture,
Victoria Volk 16:58
other cultures Do they have their own rituals and their ways of doing things and I think that’s like with our rituals in the West here with funerals we’ve kind of gotten away from being participants as family members right in the process and you know, we we hire a funeral home to basically handle everything for us and handle the details
Ken Ross 17:19
that made my mother critic closed casket like come on, you got to like say goodbye to the person who can’t say goodbye to a box. Think right? Saying goodbye.
Victoria Volk 17:28
Right? What is your most favorite part of of all the work that your mom had done and accomplished in her life? What is been your favorite piece of it?
Ken Ross 17:38
That’s a tough one. So I’ve got my cat here is going to be pushing against the screen here. Um, you know, I love the way my mom brought in humor to you know, her work, you know, everyone thought, oh, Kubler Ross must have been really serious, right? You know, you look at Radio labs Instagram page right now. And their last photograph they published was my mom wearing an ETL fit, right? She’s in a wheelchair, but she’s still an ETL fit. Like, given people call it the finger because she had chronic pain syndrome. So she didn’t like being hugged. So she’d given the finger like, 80. But yeah, she brought a lot of humor into her work and lightheartedness. And, you know, even though it’s you’re working with dying children all week long, she was totally funny and totally full of life. And, you know, just give you energy, right? So she just showed that it doesn’t have to be depressing and sad, you know, I mean, it is to some degree, of course, but, you know, you can also refocus your energy on life. Two,
Victoria Volk 18:39
so you mentioned that there was this difference in opinion of life after death between your mother and your father. And how did that play out? Ultimately,
Ken Ross 18:52
it was challenging because my father had, I don’t know how he had like, 200 brains in his office, like in a room, right? And he’s, you know, he changes director of his department at Loyola in Chicago. He’s writing all these papers and doing lectures and you know, he was you know, they’re gonna name NEMA library after him, right? The guy was a smart guy he studied. You know, he went to medical school in German, he didn’t speak German. So imagine going to medical school, the language you don’t speak. I mean, that is a driven, intelligent person, right? So, you know, he knew what he’s talking about. And so to my mother, all right, she’s the world’s leading expert on death and dying here talking to those genius neuropathologists you know, it’s hard for the kids. Why do we say like, nothing we can say it contribute to that conversation. But you know, they, they didn’t fight. they disagreed, but they disagree. politely. No, no, Elizabeth, it’s this chemical and that chemical in this and that and this was like, No, we had a blind person come in, and they could tell you how many people were in the room and what color they were wearing, and And so, you know, as like, as like a no win this agreement, so they just agreed to disagree. And that was fine. It was just like that a father had a great sense of humor, and they both kind of laughed about it. So it wasn’t a big deal. But you know, it left us both going home, I went went to a kinesiologist. And they did their little, you know, kind of Hocus Pocus thing and they said you are conflicted between your parents because you respect them both. You love them both. But they were in different energies. I’m like, wow, this person is really good. Pick that up.
Victoria Volk 20:34
So your dad’s opinion of that never changed. never wavered
Ken Ross 20:37
didn’t waver. But of course, there’s this famous rose story that goes along with my mother, that when my sister was like six or seven years old, he said he’s gonna send her flowers on the first snowfall after he died. And that’s basically what he did. He sent flowers, and he died that afternoon. And then next day, my sister got flowers on her front doorstep in the snow. You know, 2530 years later. So what did that mean? Right? So my mother’s like, I told him. My mother think she’d won that argument. Did she? I don’t know. We’ll find out.
Victoria Volk 21:13
There was a beautiful story about a boy named jeffie. And in her book, The Wheel of Life really, like, moved me. But jeffie was a boy that she had worked with and he was had leukemia much of his life. Are you familiar? Do you remember the story?
Ken Ross 21:30
I remember the name, but I can’t remember that particular story. Because I’ve heard like, 10,000 structure.
Victoria Volk 21:35
He had the tricycle or the bicycle. He had gotten a bicycle for his birthday. And he told his dad or
Ken Ross 21:41
one with a brother. Yeah, yeah. Right. Right. The beautiful thing
Victoria Volk 21:45
about her work is that she helped families. I mean, she gave the family a beautiful gift in that in this boy too, because he wanted to go home. And he helped him he helped him communicate that to his parents. And so they took him home, because there was nothing more he didn’t want to do. And he didn’t want to do any more chemo, he was done. So they took him home. And then he said to his dad, because he had gotten this brand new bicycle, but he never got to ride it. He told his dad take this bike down. And he said in you, Dr. Ross, you’re gonna hold my mom back. Right? Because he knew that she could not not, you know, ride with him and hold him and make sure it doesn’t fall and or something. Yeah, he ended up giving the bike to his brother for his birthday because he knew that he was going to pass away. But even before they left the hospital, he told Dr. Ross he had said to her, you know, cuz she said, Well, I don’t have time to go home with all my patients or, you know, all the all the children I help. And he’s like, Don’t worry, it’ll be 10 minutes, like he knew he was going to go home and die. But it was just a beautiful story. It truly truly touched me. But I just think that that’s the beautiful thing about her work is that she assisted so many people in having good deaths.
Ken Ross 22:54
My mother was a master at kind of pulling out symbolic, nonverbal language. So what she called it and said, like a very important part of our work is that my mother, she had like antenna and she could just pick up things that were not said verbally, but she could pick up things and she has new like, she’s like head Oh, radar station on her head, she was picking up all the stuff, nonverbal communication, and she could just find out stuff about patients in seconds, and go Okay, all we got to talk here because this person’s about to go. Or this person needs to say something that’s gonna be a big breakthrough. And she was just a master at that. And she did it to me too, which made me crazy, couldn’t keep any secrets from my mom, cuz she just pick up stuff.
Victoria Volk 23:40
very intuitive and empathic, likely to
Ken Ross 23:44
incredibly, like just the stories that, you know, I heard about my mom picking up stuff or just out of this world.
Victoria Volk 23:50
I mean, that’s just one little blip of her work of what she did
Ken Ross 23:54
hundreds and hundreds of stories I’ve heard just on that particular topic. And I have my favorites. But I mean, you know, everyone I talked to, oh my God. He said, assuming your mother did, I’m like, Oh, yeah, she does that all the time every week.
Victoria Volk 24:06
Give me one of your favorites. my very
Ken Ross 24:09
favorite I heard after she died. I heard it from her best friend in the late 60s was this the hospitals are really mad at her or doing this work with dying patients. So they assigned her this big, like six foot three African American priest, who turns out was also a Black Panther. Right? So here’s my mom, five foot tall Swiss accent with a six foot three African American Black Panther priest come down the hallway. It’s quite the scene, right? In the 60s, that was pretty heavy duty. Yeah, so anyway, within a few weeks, the priests like like fell in love, not romantically but with my mom and her work and said, Okay, I’m not going to stop her. I’m going to protect her. So if any doctor got my mom’s face, this, you know, six foot three guy said, you get out of here or else it’s going to be trouble. And so they weren’t about to get in a fight with a priest so they’d head out and Elizabeth would do her work. But anyway, he said, like one time we came into a room and this woman had cancer of the jaw and throat and had her mouth wired shut. And we sat down. And he said, Your mother seemed to have an entire conversation with her, even though she could only grunt and you could not understand a single word. The woman said, Your mother understood her and was answering her. And a woman would grant your mother would talk the woman grant. And this went back and forth for a few minutes. And then your mother turned to me and said, Get this woman an apple and walked out of the room with no explanation. He said, Well, why would I get a woman whose mouth is wired shut, and Apple didn’t make sense. They said, Your mother’s very famous. And he didn’t say no, your mother. So I went down to the cafeteria, got swollen and apple and she started crying. And so I said to her, can you please explain what transpired between you and Elizabeth? If I get a piece of paper and a pen? Can you write down what happened? And she wrote that she had been school teacher, and she wanted to get one more Apple like our students used to give her before she died. And and disguise like, she did not say a word like you cannot. How did Elizabeth come up with this? That’s just unbelievable. But your mother does this? Did this like every day? It’s incredible.
Victoria Volk 26:10
Wow. Wow. That’s a good story. Yeah. That’s a good story.
Ken Ross 26:15
Yeah. I mean, he has lots of and she did it in our workshops every week to just craziness. Like, there was 100 people sitting around in a workshop, and one person wouldn’t participate. And my mother wouldn’t allow that. So I brought the guy into the circle, and said, Look, I’m homeless, I only came for the food. Somebody gave me this as a gift. I appreciate what you’re doing. But you know, there’s nothing you can do or say, to get me to participate. I am dead inside. So my mother sat there for like, 15 minutes, not a word. And the staffs like, Oh, this guy is stumped Elizabeth finally. And so she said, Let’s sing a song. And my mother picked a song. They also 100 people started singing it and this guy broke down crying uncontrollably. And when he composed himself, he said, that’s a song. I used to sing to my son before he died. He was 16. How did Elizabeth pick that song? Right? I mean, unbelievable.
Victoria Volk 27:06
Yeah, I literally have goosebumps.
Ken Ross 27:10
It’s like, you know, she had the hotline to the big guy upstairs.
Victoria Volk 27:15
Wow. I wonder someday she’ll be a saint and be a sainthood.
Ken Ross 27:21
Saint and devil. She was naughty, but nice.
Victoria Volk 27:26
So what is it? You know, that’s the thing like she seems like this feisty, like, don’t you’re no one’s gonna stop me. Oh, yeah. You know, like, very driven. And where does that come from? Where did that come from?
Ken Ross 27:38
From her father. Her father was incredibly stubborn. And she was constantly butting heads with her father, because she was stubborn, too, naturally. But I think her father was like the thing like, who was going to be more stubborn? And so yeah, my mother’s is driven from day one. She was doing things which were totally ridiculous. And no one was going to stop, right? I mean, when she was a kid, she had a pet monkey. Nobody in rural Switzerland in 1930s had a pet monkey. My mother had a pet monkey had African dolls. Swiss girls didn’t play with African dolls. Where did that come from? You know, my mother went to one of the neighbors who was dying and asked him what it was like to be dying, which was like seven years old. Swiss girls didn’t do that. No, but my mother did. Right? I mean, just everything was always focused on like, inquiring want to know what life’s about what’s death, about what you know, I want to know, I want this. Don’t get my wife. She would beat up the school bully if you picked on like her sister. Yeah. And she was tiny. So she was just driven from day one.
Victoria Volk 28:44
Do you have any doubts that when we come into this world, that the path is kind of laid out in front of us? And yes, it’s our freewill to choose and follow those insights or follow those intuitive things that Barker interest or our curiosity. But do you believe that that is just something that like she knew her path? Like she just followed the her curiosity wherever it led her?
Ken Ross 29:09
Yeah, absolutely. I think she said, You know, we’re all here to figure out what our path is. And most people don’t really find it, or they find pieces of it, but they don’t really find the center of the river. And my mom was like, you know, in the center of the river from day one. She just knew what she had to do. And she was always striving for more and more and didn’t matter if it was realistic or possible. She just did it.
Victoria Volk 29:32
Well, and she didn’t listen to the naysayers even as a young child, right? she just, she could have felt like when someone said to her well, who has a pet monkey? Well, oh, yeah, that’s kind of weird, you know, and, you know, but she didn’t she continued on like, she marched to the beat of her own drum. Oh, yeah, I mean,
Ken Ross 29:50
her stubbornness is like legendary during her one of her last Tia strokes after the fire, like I’m sitting with her, and she’s In the middle of having a stroke, right, and I’m trying to get her to go to the hospital and she’s like, no, get me a cigarette, you know. You’re having a stroke. Yeah. Okay, get me a cigarette like him have a stroke who asked for a cigarette in the middle of a stroke? I mean, you don’t take me to the hospital, they’ll kill me. You know, I mean, just insane.
Victoria Volk 30:22
Do you mind sharing what her last words for you were?
Ken Ross 30:25
Well, it’s really interesting. It wasn’t her like very last word. But you know, for nine years, I took care of her. And you know, she was angry to some degree, and then she gets bashed for that too. It’s like, Okay, well, let’s say your house has burned down. All your research labs research has burned down. Your favorite animal shot, the police declare an accident. You know, you have paralyzing stroke. He can’t garden you can’t do your work. You can’t do anything. You sit in a chair. Why would you be angry? Like, oh, she’s a human being. So she was expected to be like, you know, Buddha or something. But, so for nine years, he’s like, you know, if he was angry, he can see on the Oprah interview. It’s on YouTube, but her version of angry is like, you know, she’s so like laughing and smiling too. So it’s not like he’s like wow, with a knife. But anyway, she said, Oh, I want to die. I want to die. Shot suicide. Oh, she’s like, okay, I’ve done all my work. I’m ready to check out it’s no big deal. Let’s just go so after nine years of saying she wants to die, she’s ready to die. Like out of the blue. I’m in a room as Kennet. I’m not ready to die. I don’t want to die right now. I’m like, What? So I’m like, What did you say? And then to change the subject, like, go get me talk or something, or just totally like, oh, give me some flowers? Or I’m like, wait, no, what did you say? She would not go back to it. And I’m like, What did that what was that after nine years. And then a few weeks later, she died. And it took me like two, three years to realize that, oh, my mom learned her final lesson. That’s what she’s always saying, when we learn our lessons, we’re allowed to graduate, which means die, make our transition. And so when my mom like over all of her anger, and learned her final lesson to let people love her and take care of her, not being the one in charge, and she was allowed to graduate, right away is like, Wow, it was totally right. That’s exactly what she said her whole life. And she learned her final lesson, she was allowed to make her departure
Victoria Volk 32:30
that reminds me of I did a podcast interview with a medium who mentioned one of her most memorable clients was mother who had lost a son to suicide. And the mother was so concerned that the son was not in heaven, because like he was really being his soul was tormented or whatever. And the medium told her, Well, the son told the medium and the medium communicated that. No, he’s in school, because he didn’t learn his lessons in the physical plane that he had to learn it. You know, his soul had to learn it after. And so that he was in school, learning his lessons. So it made me think of that. And so what I’m curious then to like, what the lessons that your mom has passed on to you about the afterlife, what has stuck with you, mostly?
Ken Ross 33:22
in that department, I have to say, I’m torn between my parents because my father did not leave life after death. Mm, smart guy, genius. Great guy, mother? Absolutely. You know, I saw any number of things that have no rational explanation. So I guess I kind of take a hybrid view of both my parents. And my only concern is like, what’s now today? I have no interest. Like if you had a fortune teller medium, who could? Who was absolutely you knew was like the real thing and tell you everything. I would have zero interest because I love the surprise. I don’t want to know. And I don’t think pragmatism is the right word. I don’t know what the word is. But I’m just like mother taught me is that whatever happens is, what happens is fine, it’s like, everything’s fine. That’s what’s gonna happen. You know, my only fear, I guess, is, I have no fear of death. I only fear like, the things that I can control. So I can’t control death, but I can control how I live. My fear, I guess would be like wasting my life or not living to the max, right? So that’s my only fear is like, oh, I’ve got to use every opportunity, I’ve got to look for the clues. Because that’s what I can control. I can control if you know, a meteor falls on my head. I’m not worried about that. I’m not worried the planes gonna crash or, you know, I’m gonna die or whatever, because I have no control over that. So I only fear the things I can control the things that are in my power. I have no interest in life after death, in that, whatever happens can happen and that Nature and I totally embrace whatever, whatever is real. You know, in the afterlife. That’s great. If there’s no life after death, that’d be great. There’s life after that great if there’s reincarnation, that’s great. I just, I just totally maybe as Buddhist I don’t know, I just whatever happens, I accept, because that’s what, that’s the nature of the universe. And so I accepted 1,000%. So I’m not, I don’t care what happens. Does that make sense? Yeah, yeah. Like I just like, at peace with the reality of what is
Victoria Volk 35:35
very much you’re in the present. And that’s a lot. That’s a very big problem for a lot of people. And so I congratulate you for that. Because, I mean, like, either a lot of people are stuck in the past, or they’re stuck in the future, they’re always thinking ahead. And they’re always, you know, planning for the, for tomorrow or next week in the next year, but yet, they can’t like just be still in the moment, you know? Yeah, it was a good wake
Ken Ross 35:58
up. And I have this thing called the dice theory, like, every day, I want to like roll the dice, meaning, I want to make something happen. Right? I don’t know what it is. Sometimes, you know, I feel like Oh, you know what I should call 10. People today, call 10 people and see what they’re doing. Maybe they’ll give me an idea. Or maybe I’ll give them an idea. Maybe call 10 strangers go on LinkedIn and just contact 10 people and see what happens. It’s like I’m just rolling the dice of life going, Hey, let’s make something happen. Well, let’s let’s go and take a drive and move on discover new restaurant or new thing. Or maybe I’ll meet somebody or so it’s my dice theory, like everyday, make something happen just by chance, or by feeling the groove like, you know, today, I think I should work on my mom’s tapes are my mom’s books or call some publishers and just make something happen. So I have a everyday I want to throw that dice to like make things happen, because a dice will bump into other dice, and start something you wouldn’t have expected had you not throw the dice, or create a chain reaction. I’m going to call my group and prove and see, hey, maybe we can come up with an idea just by having a talk. So I’ve worked my dice theory every day.
Victoria Volk 37:12
I absolutely love that. Is that how you connected with me on LinkedIn? Yeah, rolled the dice.
Ken Ross 37:19
Part of the dice theory,
Victoria Volk 37:20
and I rolled the dice right back at you. Well, I’ll take that as a handshake, leave you my podcast. Yeah. Here we sit, right?
Ken Ross 37:27
That’s totally the dice theory, right? Like if I didn’t like reach out, then we wouldn’t be here today. And maybe you’ll meet somebody else from my mom’s family. And you’ll have something that’s not only for me, it’s for other people, I
Victoria Volk 37:39
impact roll it for,
Ken Ross 37:41
for the universe and for everybody and to make things happen for everybody. Also, for other people,
Victoria Volk 37:48
I love that.
Ken Ross 37:49
I have the dice series as my
Victoria Volk 37:52
maybe that’s a book title.
Ken Ross 37:54
That isn’t dicey living your life.
Victoria Volk 37:57
Yeah, you better not chop that down. I get the first copy.
Ken Ross 38:02
Okay, you’re part of a dice theory. So right, it works. You’re here. I’m here. And this is like, you know, but every day I want to roll the dice and like, I still want to sit back and wait, you know, if you sit back, and maybe it’ll happen, but if you throw the dice, then you’re participating. It’s like, and you know, it’s like, I walk down the street and I talk to people in countries where I go and things happen. Oh, here’s the dice theory. I had two weeks off, and I bought a one way ticket to Chile. I got the first night hotel and and I had no plans. I didn’t study a book. I didn’t make no idea what’s happening in Chile or Santiago. I just flew down there one way. That’s it, I’m walking down the street first hour, nice doorway, I take a selfie. An hour later, somebody on Facebook says, oh, I’ve been writing you from Colombia for three years. I wanted to meet you. Can we have dinner tonight? I’m now in Santiago with my boyfriend. I’m like, yeah, cuz I have no plans. I’m just throwing the dice. So she said I’m going to bring a translator on speak English. So we met for dinner. And she had my mom’s beliefs tattooed on her arm, right? So like a hardcore mom fan. He said, I want to start a foundation in Chile. I go great. Well, I mean, you got these tattoos you’re like, seem like you’re really a lovely person. You’re really like enthusiastic. I said, if the board doesn’t agree within the next 90 days, I will just give you permission to do it. Because I feel this is right as part of my dice theory. Right? So within 90 days, the board said yes, she started a chapter. And her dream was to start the first pediatric hospice in Chile and Santiago. So he kr initiated the first pediatric hospice in Chile, because of the
Victoria Volk 39:38
dice theory, because he took a selfie in front of a picture that someone
Ken Ross 39:41
because I just bought a one way ticket to Chile, I thought, Oh, I just feel like I want to do this. I need to do this. So this is a nice theory. Like there’s a pediatric hospice being built out in San Diego because of the dice theory, right? It’s like,
Victoria Volk 39:52
Ah, yes. Amazing. Yeah, it’s following the intuitive hits. Like you get this intuitive thought like Oh, just book it. It’s One thing to have a thought it’s another thing to follow up and take action on that thought. And how many thoughts in a day do we let just slip by us? You know, just picking up the phone and telling someone, Hey, how are you doing? I’ve been thinking about you. I do that a lot.
Ken Ross 40:14
You know, maybe next week, they died in a car accident, something but at least you reached out and like, you didn’t have unfinished business. So I’m saying like, Don’t die with unfinished business.
Victoria Volk 40:24
So we stay in grief recovery, too. Yeah, so that was a thing
Ken Ross 40:27
I like in the 70s. Her workshops. Were all about dealing with your unfinished business. Right? Oh, so you can have a good death? Yeah, yeah. So I just went to Kurdistan in northern Iraq, right? And I’m like, Well, okay. It’s as nice as for me, but it’s kind of, not maybe not hedonistic, but it’s like, okay, I want to give back to. So I reached out to a board member who travels a lot. And I said, Do you have any contacts in Iraq? He said, Oh, yeah, I know, an oncologist in the eastern part of Kurdistan. So I wrote her. I didn’t hear back. And when I got there, I thought, I’m gonna try one more time. I reached out. She said, Oh, yeah, well, can we have a meeting tomorrow morning? I’m like, Yeah, great. So I went there. And we had an hour long talk, I tour the hospital, it was very depressing. It was the best hospitals, supposedly in Iraq. And so should we really need help? So I said, Oh, well, we’ll give you our palliative care trainings from the foundation, if that would help, right. And so then I reached out to the board member who connected us, I said, we need to help this woman. So he’s connected her to this worldwide palliative care group. So I’m hoping that will lead to things too. But it’s because of like, Oh, I should, like, do something for mom and the foundation while I’m in Kurdistan, right. So it’s also part of the theory of just like, I was like, you know, it’s great for me having a nice trip and my photography, but let’s like, it works better with karma, if it goes both ways, and I do something for other people. So, so that was a nice example, too. It’s like, we’ve just given them 11 classes, and we’re gonna be sending them to more classes. And I tried to connect them some people to get some more trainings, and they have a lot of problems there with money and lack of pain medication, and so forth. And that I can’t do anything about but at least we can help train their doctors,
Victoria Volk 42:19
which will be huge. So the ripples impact? Yeah. Oh, I love that. The dice theory, I want to kind of come back to something, you know, that I asked earlier about your mom, and at the end of her life? Have you had any moments of where you felt like, Oh, that’s my mom, like, tapping me on the shoulder. Oh, after she passed,
Ken Ross 42:43
Oh, yes. I have a drum set. I’m part time drummer. Because I don’t do enough. And my mom had sense of humor. So three or four times, within the first year after she died. Every time I bend over to tie my shoe, the snare drum would hit just once. I mean really loud. And it would scare the bejesus out of me. Only when I’m bending over, like, you know ones, like maximum freakout effect in the house by myself and bang,
Victoria Volk 43:16
undeniable, right? Yeah, that’s like,
Ken Ross 43:19
mommy gonna give me a heart attack. And then once I was in my bedroom closet, my cat had kittens sitting on the floor with my girlfriend at the time. And I clearly heard my mom’s voice say hello with her Swiss accent. I’m like, wow, I totally projected mom’s voice that time. I was like, I was the loudest I’ve ever heard my mom’s voice. And I look up and my girlfriend’s like, what was that? There’s a woman in here. Like you heard that? She’s like, yeah, there’s is a housekeeper in here. I’m like, is Sunday night at 11? What would a housekeeper be? Like? Like, know that? I think that was mom. Because Yeah, she had an accent. I’m like, yeah, that was mom.
Victoria Volk 43:59
Wow, that was weird. So that still hasn’t swayed your her thoughts on afterlife? Oh, no,
Ken Ross 44:05
I totally not saying it’s not. But if it is, I don’t know what form it is. You know, is it the Buddhist idea is that the Christian idea is, you know, I mean,
Victoria Volk 44:17
yeah, beautiful mystery, right?
Ken Ross 44:19
It’s not like, saying I don’t care sounds too irreverent. But it’s like, whatever it is, is like, you know, I certainly I’m not saying there’s not I’m saying, I don’t know, 100% maybe I know 99%. But the only thing I know 100% is I’m here today and and that’s great. And I just work on today and what I know and what I have and throw those dice and when I get to that point, then I’ll know that for sure. Yeah,
Victoria Volk 44:45
do we ever really know like till battle. It doesn’t matter.
Ken Ross 44:48
To me if there’s life after death, or it’s not or it’s in this form or I come back 100 more times. You know, I just accept it because that’s what it is. You
Victoria Volk 45:00
brings to mind a thought I have just in bringing that up. It’s because for a lot of Grievers, or people who are bereaved and had to say goodbye, and maybe it was a traumatic death or whatever they have, you know, unfinished business with that person or whatever it is, to feel that connection with someone to know that there’s a connection or that there is something after can bring people a lot of comfort. But But I can imagine, though, and just in knowing who your mom was in the work that she did, like, you feel connection with her and everything that you do, I imagine.
Ken Ross 45:38
Oh, yeah, I mean, you know, I mean with especially with my mom, because I’m totally spoiled because I have, you know, her two dozen books and I have 100 audio tapes. And I have 100 videotapes, and I have her on YouTube and I have an everywhere I go, like on the planet, people like Oh, I know your mother, I make our mother like, you know, like, everywhere, it’s like, and I hear these, I keep hearing new stories, like how many stories can there be how many people have met on this planet? Like, Everywhere I go, it’s like wow, like is is like she lived 10 lifetimes or something because it’s not possible that one person did so much in such a short amount of time. You know, I mean, she basically started when she was 40 years old, and retired in her 60s and she wrote two dozen books and hundreds of chapters and did hundreds of workshops around the world and started the hospice movement to some degree and started the belif Kermode son degree and she you know, I mean she was seeing patients she had a working farm she was a mother she was answering hundreds of 1000s of letters she was you know cooking for the workshops she didn’t have enough to do and you know is just insane how much he did as I say impossible that one person did all this but she did
Victoria Volk 46:55
do you think she had any regrets or did she ever voice any regrets?
Ken Ross 46:59
She was just pissed off about her paralysis at the end but I was out of her control yeah was out of our control so other than that pin boys any
Victoria Volk 47:10
you know like wishing that she would have started sooner like oh if I just started my 20s I would have had you know this many more years to
Ken Ross 47:19
you know, at the end she said yeah, Kenneth is Do whatever you want if you want to do my work great if you don’t want to do my work great. Do whatever feels right. And destroy no guilt. No expectations. No. pressure.
Victoria Volk 47:31
I was a gift to Yeah. So Kim, if you if you were to summarize her life in five minutes or less sure. What what has I mean, just do a rundown list of like, over life over work.
Ken Ross 47:53
Um, so I think the the main overview, the umbrellas fabric, would say that she was trying to fight the depersonalization of the dying, the the dehumanization of the death process and of patients, you know, because she said, patients are just like, numbers in a bed is disgusting, like, treat these people as individuals, right? You know, and, and respect them and at least give them a few minutes of personal dignity. Just don’t treat them like okay, this is the cancer patient, this leukemia patient, that’s the whatever, you know, so she was fighting the dehumanization, and a medicalization of, of dying, right? So that’s her big thing was treating people as human beings not as patients and in numbers of beds and things. Right. And, and fighting for hospice because she really wanted people to die at home with their families with proper care and pain medication. She said, No one should ever die in pain. It’s ridiculous that, you know, in the late 19th century and 20th century and 21st century, we haven’t made more progress with this. said there’s pain medications, why are people dying in pain in Africa? Why did I go this hospital in Kurdistan? There’s no pain medication in the 21st century. It’s just outrageous. It’s about her talking about the the four quadrants was really big for her. Nobody talks about but everyone uses but think they don’t realize I think it came from my mother is that imperative care, we have, you know, the balance of the emotional, intellectual, physical and spiritual. I think this idea came from my mom, which she got it I think, from young but not used in palliative care. But in early 70s, my mother was saying you need to treat patients with the four quadrants. If you just treat the physical you’re not healing a person you need to deal with the emotional and intellectual and the spiritual, as well as the physical right so the four quadrants was huge for my mother, I was part of everything in my mom’s world was a circle a wheel right. So The four quadrants of of health is the basis of palliative care, but I think no one realizes it came from most of this work. And then what else externalizing our emotions. Learning to everything in life is perspective. Her work is very much like logotherapy she was friends with Viktor Frankl you know, they really do their work was very tied together. challenging your fears, embrace embracing unconditional love. bioethics, listening hope. I think these are the wheel that makes up Elizabeth work.
Victoria Volk 50:35
Yeah, I actually had Dr. Chris Kerr, who was he’s been studying end of life experiences in the surviving death series on Netflix, I had him on the podcast and, and that, and again, like that just comes back to the end of life training that I had, we that’s what we talk about is the whole person. Because when you when you die, you come into this world, a whole person, and you go out a whole person spiritually, physically, emotionally, mentally, like all of those things, right? So yeah, it’s very important that the all the whole person is addressed. Right? So they can have a good death is really what it comes down to.
Ken Ross 51:15
What else that’s and learning, of course, to listen to symbolic verbal language and symbolic nonverbal language is also extremely important. When you’re a death doula or end of life worker doctor working with dying patients, really learning about the symbolic, non non verbal language of people is hugely important because a lot of people don’t have the words children don’t have the words they don’t have the vocabulary. Older people are beginning to lose over vocabulary. But they give you science, like look for the science.
Victoria Volk 51:45
Absolutely. What is, I mean, can you just kind of quickly go over like, because I know her life has been it? You just you kind of touched on it at the very beginning. Like just the all the stuff that she did? What’s the highlight reel?
Ken Ross 52:05
highlight reel? another tough question. For me, it’s like, you know, the day World War Two ended, she joined a peace group. And you know, living in Switzerland, comfortable food, no dangerous, no, nothing, you know, she could have just easily stayed there and lived a happy, comfortable life. But she she needed to go out and always help the underdog. And so she joined a peace group. And her father said, If you leave the house, you’re never going to come back. And my mother said, I don’t care. Like, this is the right thing to do. People are suffering, and we’re so comfortable. How can we sit here and not just be horrified how, you know, we have all the stuff and everyone else is suffering around us in Europe. So she hitchhiked you know, through France and rebuilt the village. Right. And you know, she was starving. I mean, she was like, you know, looking for scraps of bread on on the ground when she could have been comfortable at home. And then she went up into Denmark, she almost died. And then she went to Germany, and she almost died there from burns from a pot that broken boiling oil spilled on her legs, you know, and then she went to Denmark, Sweden, went into Poland, she worked in a camp, she lived with the gypsies, she went to the concentration camps. I mean, those two years alone are just, you know, beyond belief, what she did, and so brave, and risking her life over and over and over just to help, you know, dying people and people who are just barely hanging on with nothing. And so that was amazing by itself. And then she, she snuck in a German convoy. They put her in a box of vegetables, and locked it up. And she snuck through the Russian lines, and went back to Berlin where she caught a train back to Switzerland. So it was crazy. And then, you know, she went to medical school when women were not going to medical school. And she didn’t have the money she needed to have the proper accreditation. But because of her relief work during World War Two, after World War Two, I kind of let her slide in Wow. You know, went to America and then you know, the whole story with the University of Chicago and fighting the establishment and having doctors spit on her in the hallway and people leaving nasty notes. How do you talk to dying patients, you know, your vulture should be ashamed of yourself. I’m going to try to take your license away horrible, you know, just for trying to lead dying patients have a chance to say goodbye to the families.
Victoria Volk 54:45
so incredible. And that wasn’t even that long ago. And I think about this grand scheme of things.
Ken Ross 54:51
Yeah. And she has so many stories that, you know, patients dying and their families literally 10 footer in the hallway and because it’s not visiting hours, they don’t let the family To say goodbye and the patient dies alone in a room because of the hospital rules. And also, she was also fighting against the hospital rules and the rules that they can’t bring in children and all these ridiculous things that were going on around this kind of sick death culture in America,
Victoria Volk 55:14
what do you think, helped change that the most? I mean, just because what was there something a part of her work that really changed that aspect of the dyeing process,
Ken Ross 55:25
you know, she shined the light on it, between her book and that article in Life magazine, you know, a millions of people read about it. And here’s this woman willing to talk about death in an open and honest way. And no one was doing that, I mean, almost no one that was doing that anyway. And my mother had a capacity to kind of use a simple language, in part because she was a foreigner, and didn’t have a big command of the English language. But she had this way of just communicating way that people could understand whether it was a doctor or a patient or anybody. And, you know, this Life magazine article is shine so much light that they could no longer deny that there was this huge problem happening in America. And you know, in Western culture, Europe, and elsewhere. So, so much light shined on it, that they could no longer like, hide it. So they had to face it.
Victoria Volk 56:17
So in the midst of COVID, in the process of ways that people have not been able to be with their loved ones, and the impact that has on the bereaved and those dying, and what do you think your mom would have said to that? And do you think that that has actually highlighted how far behind we are?
Ken Ross 56:42
I think it has, because there’s been a lot of articles talking about Elizabeth and, and the stages of grief and all that more than usual. But I think my mother would compare COVID to the AIDS crisis, because she said it was just like a crisis, and that there was so much misinformation, so much fear, there’s so much anger that was being mis directed at things which had nothing to do with the conversation. But people were angry, fearful, there was like, a lot of attacks, all these things going on, which is very similar to COVID. Right? You know, people’s fear, you know, death and a brings out their fear of death, right? And that comes out in various ways and hostility and all this air rage and all these things going on now is misdirected anger over their fear of COVID and death. So, you know, she was a great parallels because, you know, the whole age crisis was a big thing for my mom and demonstrating how the society had so much further to go with the conversation about death and dying. And grief and facing an honestly and, and dealing with our unfinished business. Right. So just, you know, COVID, again, demonstrates we haven’t dealt with our unfinished business.
Victoria Volk 57:55
Now, many of us. And you since you brought it up the five stages. Can we go there? Can we talk about that a little bit?
Ken Ross 58:05
Speaking of anger,
Victoria Volk 58:08
yeah. Tell me what, tell me really lay the truth out today.
Ken Ross 58:14
Talk to 10 people get 10 versions of the truth.
Victoria Volk 58:17
Yeah, yeah. Get it from the horse’s mouth, like I guess. Yeah.
Ken Ross 58:21
My version of the truth. So we have on death and dying of the real book, right? Yes, my my dummy copy. If we go to page 251, I believe Yes. Sophie, look in the actual book, right? So we look here, we see that Elizabeth clearly writes about 10 stages, right? It says 12345. And yet those 10 boxes. So I think to some degree, the publisher, kind of when they were putting together the manuscript kind of focused it into five stages. I’m guessing it’s a guess, because my mom did an entire chapter on hope. But why isn’t hope, a chapter big? You know, a sage because she does a whole chapter on anger or chapter on bargaining. denial. There’s a whole chapter on hope, but they didn’t consider that a stage or why not? I don’t know. It doesn’t make sense. But anyway, basically, Elizabeth was trying to say that grief is complex. And back in the 60s, grief was this monolithic thing. And Elizabeth was trying to say that grief is made up of different components, right? So it’s very ironic that people say to me, oh, you know, Elizabeth didn’t get it right. Because grief is complex, and it’s not made up of five stages. I’m like, Well, okay. The point is that she was saying that grief is made up of individual emotions. That you know, it’s not one thing you can add anxiety you can add, you know, my mom talked about preparatory grief which is the same as anticipatory grief, right, which became Kind of trendy to talk about, I think the last two years, because that’s part of COVID this anticipatory grief, but Elizabeth mentioned it in on death and dying 50 years ago, and some people are acting like, you know, it was just like discovered or, or identified just recently, but you know, Elizabeth, not a half a century ago. And she talked about shock. And she talked about hope. And she talked about, you know, Claire Bidwell Smith, I think, did a book on the missing stage of anxiety. Elizabeth mentioned anxiety, 14 times in on death and dying, right? So But no, she didn’t identify it as a stage. But he identified it as an element of the process that we sometimes go through. So the stages are not meant to be like a ladder, or some way to graduate to acceptance, it’s just meant to be a way to have a conversation is a models, not the only model is this one model that you want to contribute, to have a conversation about grief, which people weren’t having, and still don’t really have in healthy ways, quite often. So again, it’s a model, it’s not meant to be the only model is meant to be a flexible model. And if you look on our website, AK ar foundation.org, you’ll see there’s various demonstrations of how she talked about the stages, as circles, you know, as as one line going back and forth. She talks about dreams as being part of the stages, talks about a lot of things which are not generally talked about in society that will fix fixate on the five stages. But Elizabeth talked about many more things. And after 1975, she rarely talked about stages at all. She those, I think she was on a show with O’Brien’s 7475. And she goes, Oh, let’s not talk about the stages are so old, right in 75. And then they bash Elizabeth, because that’s all she talked about. I’m like, No, that’s all you guys are talking about. She talked about 50 other things in society and popular media that just can’t let go of it. Right? They say it doesn’t exist. And yet it is the most popular grief theory on the planet. It is like, you know, not making it up. Because it’s my mother. It’s like, it’s been used in over 100 TV shows and movies. Right? It. There’s, like plays about the five stages, there’s novels, there’s cartoons, there’s games, there’s, you know, I’m teen doesn’t plays about the five stages, right? So I mean, you know, I’m sorry, but it is popular, like what does that mean? Does that mean it doesn’t exist? I don’t know, it must trigger something. To some people. There’s 10s of 1000s of articles by people who experience the five stages. So you can’t say it doesn’t exist because 10s of 1000s of articles by people said I experienced it or it helps me so you can say it’s not appropriate to everybody. You can say it’s good for some people, but it hurts other people because they think they need to go through it. You know, I would accept that. But you can’t say it doesn’t exist or it’s been disproven. That’s just you know, denial. That’s a model period.
Victoria Volk 1:03:18
Do you think Can I ask Can you clarify is is how the media and how her work has been interpreted around that has that is that not what she is? Is that what she intended? Did she you don’t I mean,
Ken Ross 1:03:36
I was with her sometimes, you know, she’d see like the Simpsons episode where something goes through the five stages. You’re like, What? Why does that bullshit love to say that word with her Swiss accent? That’s bullshit.
Victoria Volk 1:03:53
Oh, that wasn’t her intention like and in the book was in the book was written in that context, in the work of working with the dine correct.
Ken Ross 1:04:03
But I mean, I would say like, even though like the BBC just did a story saying the rise and fall of the five stages. PS we use it to train our workers. I mean that that doesn’t make sense. Like, how can you say, the fall of the five stages? pS we’re using it to train our entire staff. That’s like,
Victoria Volk 1:04:23
I think it’s one of those things that people love to hate and they love to just sink their teeth teeth into I’ve even said that it’s like of all her amazing work that she’s accomplished and done. That’s the one thing that like you said, just the people can’t let it go.
Ken Ross 1:04:39
Right? And then they blame Elizabeth because she couldn’t let it go and like she let it go. Like in 75. Yeah, that
Victoria Volk 1:04:44
wasn’t even her focus. Like that wasn’t such a small part of her work.
Ken Ross 1:04:49
So we just said the five stages used in the first was the Marvel Comics, as in Deadpool two and then Disney just use it as Their central focus of their movie krewella. And the is an actual advertising for the movie, they talk about the five stages. Yeah, and I really think it’s more popular than ever. I mean, it’s just everywhere I look. It’s used. There’s been over 60 musicians I’ve identified, who’ve done songs or albums based on the five stages or Elizabeth. I mean, how many grief theories have 60 songs written about it, or albums written about it, or like EP is like, every song is one of the stages. There’s even two bands named Kubler Ross. You know, she’s like part of popular media, like not only her stages, but she is part of it. Her voice is used in rock songs. It’s so bizarre to me sometimes.
Victoria Volk 1:05:46
Wow. She’s embedded in our culture, very much. so
Ken Ross 1:05:50
bizarre, though. It’s like, wow, where’s this gonna continue going? Like one’s gonna stop.
Victoria Volk 1:05:55
So did she clarify more of that in her later work in books.
Ken Ross 1:06:03
She really tried not to talk about it. She was like, fed up with the conversation. But right before her death, were contacted by another grief worker, David Kessler. And you know, we were contacted literally every week, can I write a book with your mother? Can I do this. And finally, I was kind of sick of it, too. So I said, you know, maybe it’s a good idea. Maybe we should talk about this way, agreed to let David work with my mom. And they did a book which just happened out here on grief, and grieving in which she further clarified and David helped clarify the five stages of grief. And again, this book is like in the top 20 or so sellers, you know, of all grief books, even now, you know, 1617 years after mom died. And sometimes it sells better than on death and dying. is still 17 years after she does. So the book came out in 2005, I think. But it’s still selling extremely well. And we’re still selling it. I think just in the last few months, we sold it in Vietnamese, Cantonese, in Mongolian. In Thai, I mean, it’s just like, it has a life of its own. It’s just unbelievable.
Victoria Volk 1:07:29
Now it’s almost it’s as if her work has a life of its own. Now it’s
Ken Ross 1:07:33
your soul to work in Farsi for the first time. And it just wow me just keeps on spreading out.
Victoria Volk 1:07:42
And you can you share quickly too on the death and die on death and dying her that first book you had mentioned to me before we started recording where how many languages and I just found it very fascinating. The fact that you shared about
Ken Ross 1:07:57
Yeah, love about this book is that is both in Hebrew and Arabic. We sold Arabic for the first time about six months ago in Saudi Arabia. So they have a psychology book in Arabic and Hebrew at the same time is just incredible. It’s really unusual. And it just speaks to the university ality of the language and message of what’s held in this book, which is not just about the stages, of course, it’s about the experiences that Diane go through, and find this language that we can have between the doctors and the patients, and make it easy to have a conversation where there’s not normally a common language between medical staff and and laymen who are dying or their families. So the new edition, the 50th anniversary edition also includes her testimony before Congress in 1972. she testified before the Committee on aging, that the way people die in this country was disgusting, and unacceptable, and we had to do something about it. So it’s just amazing to have this little Swiss hillbilly lecture in the Senate. how people should die in this country. The whole whole testimony is now in the 50th anniversary edition, which has the blue cover.
Victoria Volk 1:09:12
And I’m not sure anything has really changed. You know, I mean,
Ken Ross 1:09:16
it’s happened slowly. We have the death doulas now we didn’t have Yes, that’s true. That’s true years ago. So that is a sign of progress. Yeah, it’s so slow, but it’s, you know, it’s kind of glacier. Like,
Victoria Volk 1:09:28
is that what gives you the most hope for her work?
Ken Ross 1:09:31
Well, the fact that you know, we have four new languages in one year that we never had in 50 years is just incredible. Like, you know, I think after 50 years, the thing will have died a peaceful death. But, you know, the fact that in this last year for the first time we published in Albanian, Arabic, Farsi and Mongolian You know, that’s amazing for a book that’s half a century old. And that, you know, we keep having new foundations pop up around the world. And have this beautiful honor. So Elizabeth, and people wanting to, you know, start like book clubs in Mongolia. And we just got contacted by a group in Kenya that wants to do something with the foundation. And, you know, I really see her legacy is very much alive and appreciated, and some people are stuck on the five stages, there’s realize that, you know, Elizabeth work is very broad spectrum, and universal, you know, culturally and religiously and everything wise, it just speaks to people. And something, the way Elizabeth lived, her life just inspires people, because so many people write about the wheel of life and say, just radically transformed our life and they were suicidal. But after they read the book, they want to devote their life to hospice, or the dying, or they want to live again, it’s just, you know, amazing that letters just keep on coming in for decades and decades.
Victoria Volk 1:10:55
That’s amazing. I know, as a grief recovery specialist, and we kind of talked about this briefly before, but because there are people that poopoo, the five stages, and, and there might be some grief recovery specialists out there listening to this, that maybe were taught that I don’t know, but I personally wasn’t my training, what I was taught was that the five stages were about people who are going through terminal illness. And that’s when, you know, that’s when she was conducting that work, and that it was misinterpreted to be about,
Ken Ross 1:11:25
right, that’s a common thing people say, but
Victoria Volk 1:11:28
but I would add, it’s not, I would not deny that all of those things that she mentions don’t happen, like I absolutely full heartedly. And I think any grief recovery specialist would agree that there are emotions and feelings that someone goes through sometimes in the same moment, you know, you just, you’re angry, and you’re sad, and you’re all the things. You know, it’s that’s the complexity of grief.
Ken Ross 1:11:56
Right? So here 1974. In our second book, she said, I hope I’m making it clear that patients do not necessarily follow a classical pattern from the stage of denial to the stage of anger, bargaining, depression, and acceptance. Most of my patients have exhibited multiple stages simultaneously, right? So here’s the saying is not linear. So right. Now, if you look up the Google critiques complaints about the five stages there, many of them are, they’re not linear. Well, she said this herself in black and white in a book. And then here in the same book, she says, Please tie in the stages of dying with loss of sight, meaning that they apply to other loss and change events. Right. And this later became the Kubler Ross change, which is used, you know, by 1000s of companies, and nobody complains about that. Identify, you know, a reaction to loss and change, which could be applied to grief. And yet, maybe not, but it seems to be applied to everything.
Victoria Volk 1:12:58
I think it’s just the context in which people refer to it. And how people interpret it think people put their phone filler words in, you know, like, instead of really looking at, like what you just read, people hear what they want, right? I think that’s really what it comes down to people are going to hear what they want. And
Ken Ross 1:13:17
yes, it was like, while she’s writing at the stages of dying, but I think within months, she changed it to the stages of grief or stages of loss. So I mean, she was also learning about it as she was writing about it. And I think, I mean, I think within 12 months, she was saying, okay, it’s not just that I’ve realized it’s applies to other people on things. So technically, yes, but I mean, by a few months. So I mean, are you going to hold her? Like you’re inventing the light bulb? Like, well, a light bulb was only meant to be a light bulb? And then six months later, it’s used for something else does that mean, they were wrong? It’s like, no, they were still learning. Right? Yes, originally, in a six month period of mean, but over the last 50 years, you can hold her to that six month period, like, you know, you want to be a technocrat, yes. set up for that. But for a very brief moment, and even though boxes already beginning to identify, you know that the families are going through it, if you look on page 162, you’ll see she’s already beginning to refer to other people from through the stages.
Victoria Volk 1:14:26
Right? And they’re not stages, right, though? That’s not Yeah, that’s, I think that’s that word,
Ken Ross 1:14:33
inverted comments to say, Hey, I’m using this word, but I mean, don’t hang me on this word, right? And that’s what they’re doing, or phases or periods or whatever. It’s, it’s just a way to describe something. It’s not, you know, a I’m from Switzerland, and I don’t have a great command of the English language. And be you know, I’ve never written a book before. So don’t hang me on like, every nuance of every word, right? I’m trying to have, you know, give you a tool. To build a conversation around this thing that no one’s talking
Victoria Volk 1:15:03
about, so which she did, yeah, ultimately, we’re still debating it.
Ken Ross 1:15:07
50 years. Like that there’s 10s of 1000s. People said, I went through the five stages says, hey, there’s something to it. The fact that it’s the most popular brief theory in the world 50 years later says, hey, there’s got to be something to it. So it’s not the only one. It’s not right. It’s not wrong. It’s just a tool, you can use it, don’t use it, just don’t get hooked into it being like this, like written in stone is just a tool to begin framing a conversation. So that’s all it is.
Victoria Volk 1:15:40
You know, when we don’t ask like, Oh, well, what stage are you in? You’re asking, How are you feeling? Right? You know,
Ken Ross 1:15:47
people do say that. Really? Well.
Victoria Volk 1:15:50
Yeah. I guess I haven’t had people on my podcast to talk about grief, their grief. They haven’t been asked that like, Oh, well, what stage are you in? But do people probably say behind their back? Or what stage? Do you think she’s in? You know, probably.
Ken Ross 1:16:05
Yeah. I mean, if you look at any number of dozens TV shows,
Victoria Volk 1:16:08
like, Oh, for sure. like
Ken Ross 1:16:11
Michael Douglas, Alan Watts, or like, what was it the bucket list? Right. Morgan Friedman. Yeah. having a conversation. What stage are you in? denial?
Victoria Volk 1:16:22
Yeah, certainly, and TV and things like that. But I would hope in like real conversation. I don’t know that that is necessarily that
Ken Ross 1:16:29
within that projects, like, Oh, well, maybe I should know what stage I’m in. Right? Yes, there. Yeah. Morgan Freeman talking about it, you know?
Victoria Volk 1:16:37
Yeah, well, oh, I shouldn’t be I should be out of anger by now. And on to, you know, denial or
Ken Ross 1:16:45
at all whatever. Nicholson said he’s in denial. What stage Am I in? Yeah.
Victoria Volk 1:16:49
Crazy how that has just evolved over time. And I imagine where we could probably sit and have the same conversation, maybe 510 years from now?
Ken Ross 1:16:59
Yes, for sure.
Victoria Volk 1:17:01
What has your grief taught you? I mean, because you’ve lost obviously, you lost your mom and your dad, and you’ve lost people and throughout your life, and what has your grief taught you?
Ken Ross 1:17:14
Yeah, it’s just a reminder that, you know, time is finite, everything is finite. Every living thing is finite. And everything you’re doing is finite. So enjoy it, love it, absorb it, appreciate it, but just realize that
Victoria Volk 1:17:27
he got let go and roll the
Ken Ross 1:17:28
dice over everything, including yourself. So yeah, just realize that everything is transitory in life. And don’t get you know, it’s one thing my father said to me when I was young This is the people who succeed the best are the people realize that everything in life is transitory, right? You know, whatever you’re comfortable with. Don’t get too comfortable with it. Because people succeed when they learn to roll with changes and everything changes everything. You know, the love of your life, your pets, your whatever, your your health, your youth, your job, everything is transitory. So you know that people succeed who realize that, you know, he can’t hang on to it too tightly.
Victoria Volk 1:18:08
Sorry, good advice. So where do you see yourself 510 years from now? Where would you like to see yourself? 510 years from now? Where would you like to see the foundation? I have like three questions in there.
Ken Ross 1:18:22
Um, I’d like to see us have a bigger staff. So I get some help, of course. And, you know, I’d love to have like 30 chapters around the world, and the staff to support it, not just me. And I’d like to see Stanford continued to evolve that digital library, because I gave them 64 boxes of material. So there’s tons of tapes that have never been transcribed really made public. So I just released a few on our YouTube channel. But there’s a lot of stuff they said they want to go what they say they call it they want to go gold mining in my mom’s paperwork and and find amazing things and they are they want to devote just a person does full time to kind of mine through Elizabeth’s archives.
Victoria Volk 1:19:08
Wow. That’d be a cool job.
Ken Ross 1:19:11
Yeah.
Victoria Volk 1:19:12
Is there anything else you would like to share? Either about your life, your mom’s work? Anything else? What do you want people to know the most?
Ken Ross 1:19:23
Well, I feel like I’m doing what I want like five years. Like I’m doing it now. Like there’s no like I’m aiming towards like, like I said, I want to do everything now. So I’m trying to grow the foundation. I’m trying to preserve our work for future generations, trying to kind of fight them Miss information about the five stages. try and do this feature movie on mom because that will help younger generations get to know her who didn’t grow up with her in the press so much and in honestly my mom’s legacy in a way that’s realistic and describes what she really did. And that kind of wide breadth of her Work not just the silly five stages. Yeah. So and you know, I, I went to 101 countries so now maybe like 125 135. So, but there’s no particular number I’m in competition with my cousin. He’s at 104. So the competitions on Oh funny. Want to keep doing it until my back goes out
Victoria Volk 1:20:22
well where can people find you if they want to either your personal work and also your mom’s work?
Ken Ross 1:20:29
Well, we have numerous websites and numerous languages we have websites in English, French, Flemish, Spanish, Portuguese, Japanese, we have maybe a dozen Facebook pages again in various languages. We have aka Dr. Elisabeth Kubler Ross foundation in Chile, in Argentina, or Uruguay and Peru, Guatemala, Mexico, Japan, Belgium, French, hopefully starting Colombia soon and so numerous websites just type in Elisabeth Kubler Ross Foundation, and pick your language. We’re on Instagram Of course, and we have that in three languages. We’re unlinked in we are on Pinterest, and I am on Instagram Kinross, photography, and Ken rose photography calm, and I’m on LinkedIn. And I think we do everything except tik tok so far. We draw the line Snapchat, yeah, Snapchat. We don’t do that either. And then we you know, we’re working with other groups. We’re working with, like Colin Perry, you know, her American fan apologist. She does some really interesting work. We’re doing a conference with her called the nature of grief. Talking about our nature and grief combines like how our flowers used in Santa otology. You know, or trying to not, you know, not just do old school, but do new school too. And kozun some great work we’re doing. Yeah, I know more interesting things with different universities around the world. We’re trying to some project with Stanford with St. Christopher’s the press hospice in England. Oh, and a number of different people. Yeah, when US, Canada, Mexico, I think we’ve got over 50 collaborations going. So it’s a wide world out there. So trying to get the word out there and be part of the conversation. You know, there’s other great groups like reimagine and Michael hubbs group is great. You know, the death cafe’s the death over dinner. A lot of great groups doing interesting work out there. The green burial council trying to bury people in a more ecologically sound manner. So we’re beginning to work with them. Leaving a lot of stuff happening. We’re doing our education series in the fall. We have people usually from about 30 different countries attend that. We’ve had interesting speakers like William Warden IRA Byock, some my mom’s workshop staff, Joanne cacciatore. Do you know about her and the Miss foundation? She does amazing work, you should have her on your on your call. She has a grief farm up near Sedona. And she rescues animals and she finds there’s this beautiful bond between rescued animals and people going through grief especially when they’ve lost children. And somehow they really attach on to rescued animals. There’s like a shared grief and pain. So she does amazing work and she is a Brainiac. I love chatting with her. She is so wicked smart. She did a book called bearing the unbearable, beautiful book, got great reviews. I definitely recommend that book to anybody. And she was principally with parents who have lost children meaning a lot of great people out there. I’m doing a project with open to hope next week or shooting a video in Los Angeles. Okay, so Gloria and Heidi Horsley and they’ve they opened hope channel on YouTube.
Victoria Volk 1:24:12
It’s just amazing to me that I pinned you down for this conversation. So again, thank you again so much for your time and sharing about your mom’s work and about your life and your amazing insights into what you’ve learned from her from your mom and what you’ve applied from that in your own life.
Ken Ross 1:24:36
Right?
Victoria Volk 1:24:37
Yeah, the dice theory. I love it. Yeah. I will put I guess I can’t put all of those links to everything in the show notes but I will definitely put where to contact you. station
Ken Ross 1:24:51
with them and Facebook and the website. Yeah. Oh, and if you can also if people want to learn more about mom radio lab, just did a piece National Public Radio’s radio lab. Yes, I’ve been radiolab Kubler Ross, they have an hour long piece that just came out last week. That’s a great piece. That’s kind of young hip, and I know how to drive it. This is very different.
Victoria Volk 1:25:15
I think you mentioned earlier, it’s about 91%. accurate.
Ken Ross 1:25:18
Yeah, it’s like, you know, the MTV version of Elizabeth has been trendy and irreverent. But they get pretty close. Right? You know,
Victoria Volk 1:25:27
okay. I will link to that one in the show notes
Ken Ross 1:25:29
and argue with a few odds and ends. But what they say the Mick Jagger of death, had trouble dying herself. I’m like, well, she had no trouble, you know, dying. It’s like the stroke part was hard. It’s hard for anybody, but she had no trouble of death. It’s just being in pain for nine years, and not being able to work or have fun. You’re going to be a little angry.
Victoria Volk 1:25:50
Right, especially living the life she had led, right? I mean,
Ken Ross 1:25:53
wild overachiever. So to go from 10,000% you know, 1% is hard. Yeah. And, but I really like the you know, Rachel did a great a great PSA, I have no issues with it. I really like it a lot.
Victoria Volk 1:26:09
It just makes you wonder like just being a human being. It just makes you wonder someone who has sparked such an amazing conversation to have about grief and opened up the conversation in the first place. And all the work that she’s done, and then that’s what her last nine years were like, it’s disheartening. Even for me, you know, to know that that’s what that was like for her.
Ken Ross 1:26:34
Take a look at that Oprah interview on YouTube. And you’ll see she still has a lot of spark left. And even though she was retired and paralyzed, she still had like four books. Yeah, that’s true. couldn’t quite Stop, stop.
Victoria Volk 1:26:45
Well, that’s true. And that’s again, that’s speaks to don’t put yourself in a box. Like don’t limit yourself. And I think that’s one of the greatest messages today on this podcast from you and from her life is it can’t teach wrote the only limitations you have are the ones that you put on yourself.
Ken Ross 1:27:02
Absolutely. I mean, I didn’t study photography, but I went out and shot 101 country isn’t. And I did endless number of wacky things.
Victoria Volk 1:27:11
Do you think though that grief, in part was her teacher in that like, really, too, because what I believe is that grief is the the illuminator like it really shows us the contrast of what we don’t want that we really see what we do want
Ken Ross 1:27:29
the equalizer and how much how much money or fame or whatever we have, we’re all gonna die. Exactly. You know, we all end up at the same base their range, what do we do with this little short time we have, you know, make it seem like 100 lifetimes, you know, if you live it, right, you can make Yeah, I feel like I’ve lived 100 lifetimes already with all the stuff I’ve done. So yeah, I’m just a wee while Wow, that was amazing. Like, I have no complaints like, lucky me.
Victoria Volk 1:27:56
I’m a I’m just a wee bit jealous. But again, it’s accepting where we are, in our lives like exactly where we are. And this is where I’m meant to be as a mom of three kids. And National Geographic just wasn’t my calling. I guess, when I was a kid.
Ken Ross 1:28:15
I didn’t get married, because I knew I wanted to travel. And I didn’t want to be an absentee parent, like my mother was not that I have an issue with my mother. But I knew like, you know, I was different. I didn’t mind it. But I didn’t want to assume that my kids wouldn’t mind me not being home, because I really had to do that. So I said, I’m going to go photograph 101 countries, so and they have all the experiences with golf.
Victoria Volk 1:28:40
Since you went there, and since you mentioned that, can I ask them if that lies last nine years was really kind of a gift for you, in that you had nothing but time with your mom to kind of connect in a deeper way.
Ken Ross 1:28:53
It was ironic because you know, for the first nine years, she was regular mom, and then she left to do our stuff. And for the last nine years, I was her parent, right? So it’s kind of ironic that nine years here and nine years there, and in between were like weaved in and out and hung out in you know, funky places around the world. So but last night, he was Yeah, I got to spend, you know, all the time with her even though she complains I was never around much. But her ideas like not much is like, you know, three, four times a week. I’m like mom, I you know, I have a huge pile of your mail that I’m working on at home. It’s like, I don’t care about that I want some tea or I want to go shopping or I want to go somebody has to do this stuff and
Victoria Volk 1:29:42
the problems with leaving a legacy right?
Ken Ross 1:29:44
Yes. So like I’m gonna inherit it one day, my sister and I so you know, I’d like to inherit something that’s kind of his structure and I can digest not a chaos. Wow. So I mean, I have like 7000 emails right now. And hundreds of messages. And this is you know, 17 years after she died, so.
Victoria Volk 1:30:06
And I’m so grateful you answered mine. So again,
Ken Ross 1:30:11
oh, my pleasure. It’s nice to hear and smell the roses. Yeah.
Victoria Volk 1:30:16
Well, thank you again so much. I could just hang out all day. I really could. Would you? Sure? Oh, yay. Okay. I’m holding you to it. Sounds good. All right. Thank you again. And remember, when you unleash your heart, you unleash your life. Much love. From my heart to yours. Thank you for listening. If you liked this episode, please share it because Sharing is caring. And until next time, give and share compassion by being hurt with yours. And if you’re hurting, know that what you’re feeling is normal and natural. Much love my friend.
Death/Dying, Grief Stories, Grieving Voices Guest, Grieving Voices Podcast, Podcast, Spirituality |
Sirry Berndsen | The Spirit World Walks Among Us
SHOW NOTES SUMMARY:
There are psychics and then there are psychic mediums. Do you know the difference?
Sirry shares the difference between the two in this week’s episode. And, there’s so much more that we cover in this conversation including:
- Her grief growing up, things she’s experienced as an adult, and what her grief is today.
- What her thoughts are on the afterlife.
- Her thoughts on religion and mysticism of life as it relates to mediumship.
- Cultural differences in self-care when it comes to grief.
- What happens to people who do bad things after they die?
- Her experience being a Certified Medium and a Certified Grief Recovery Specialist
- Tips for those who are in preparation for a loved one dying.
- Tips for those who are grieving the loss of a loved one.
- Learn how to connect with the spirit of deceased loved ones.
So much goodness packed into this episode! Listen with an open mind and open heart, and see what comes up for you. See if you can feel the spirit within you stirring your heart to learn more. And, if you feel called to have your mind blown, I can’t recommend a session with Sirry enough! She’s highly professional and has a heart full of love and light.
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Victoria Volk 00:08
This is Victoria of the unleashedheart.com, and you’re listening to grieving voices, a podcast for hurting hearts who desire to be heard. Or anyone who wants to learn how to better support loved ones experiencing loss. As a 30-plus-year griever in advanced grief recovery methods specialist, I know how badly the conversation around grief needs to change. Through this podcast, I aim to educate gravers and non gravers alike, spread hope and inspire compassion towards those hurting. Lastly, by providing my heart with the ears in this platform, Grievers had the opportunity to share their wisdom and stories of loss and resiliency. How about we talk about grief, like we talked about the weather. Let’s get started. Thank you. Thank you. Thank you for tuning in to grieving voices. I am super excited for today’s guest. Siri bernsen holds a BFA and MFA in Visual Arts and as a certified medium by the forever family foundation. She’s a grief recovery methods specialist and a master teacher. She’s also studied as suey, reiki, and received master life regression therapy training from the Weiss Institute. Thank you, thank you for blessing me with your presence. And I am just super excited to have you on as a guest today. I personally have had a session with you blew my mind. My very first one, too. And I just I’m so thrilled to have you here. So, thank you.
Sirry Berndsen 01:42
Well, thank you for inviting me. And thank you for being relentless.
Victoria Volk 01:45
I am relentless when I had I pestered to, to you know, send in the email sending the emails and yes, if I if there’s something I feel like would be a great service to my audience. And that just really, I’m just so curious to learn more. Yeah, like, it gets me excited. So, yes.
Sirry Berndsen 02:07
It’s enthusiasm, and we all love and enthusiasm and passion, and I think that more of us could use it.
Victoria Volk 02:13
Yes. So let’s talk about, let’s start there with your work. And really what brought you to do this work.
Sirry Berndsen 02:24
So what brought me to do this work? About 20 years ago, I went through a really quite a horrific experience where somebody was violated me. And it was a turning point in my life. Because before this, so I’m gonna start from the beginning, as a child, I just had sort of this childhood faith. I think I went to church, maybe two or three times I was not a church person, none of my family members were so not raised with any religion. But my grandmother had a tiny, tiny, tiny bit of religion in her and but that was it. And so in my childhoods, I was very much the child of nature, which is very common like for people in Iceland, we are very connected to nature. And we thrive on anything and everything that has to do with the blue sky and the like the earth and everything that is our religion, that is our faith. And so when I was 12 years old, I changed and the reason why I changed my whole sort of this childhood religion or this childhood faith, at the age of 12, I had been bullied because I read here and says, this is a podcast, people don’t see me, but I have red hair and blue eyes, very, very fair, and have been bullied for probably like two or three years in school. And it was just absolutely horrendous. And I was getting to a point of feeling extremely depressed. And I was the youngest child of most of my parents. And my brother was also redheads. And my sister too. As I don’t know, my mom and dad, I didn’t really pay attention to it as like, oh, it is what it is. But I remember that the like I was about 12 years old when I started praying to God and I said to God, please make a stop. And this was, this was like, every single day I’ll be praying to God make this bullying stop, and it wouldn’t stop and then it just said one day, okay, God, I made a deal. If it doesn’t stop, I will no longer believe in you and I will no longer pray to and so that that just it just came to a complete standstill. So at this point, I’m 12 years old. And then life just continues and I had this deep faith that when you die, you go on the ground or your primitive. And that’s it done was such a simple way of thinking. And I’ll be honest now today because of the work that I do. It is the extreme simplification of everything.
Sirry Berndsen 04:43
Then you get to the point of you don’t need to worry about the afterlife is like you die on you. That’s it. So then fast forward, and then I moved to America and I had this horrible experience and I was going through a really really rough time and then something in my heart said Oh, look for Have some sort of a spiritual gathering. And a friend of mine had gone to see a psychic medium some years prior and she was off the motorway but and I remember myself think like, Oh, this is BS. And I actually changed the subject and I said to her like, oh, when would you like to go skiing next time. And so and I remember this so vividly because I just thought it was like she was Cuckoo. And so so after that horrible experience, I was, my heart was or spirit I should say, spirit was nudging me to go and seek something else. And I went to spiritualist church. And this isn’t a matter of moments of like within minutes, but my whole life changed. So in the spiritualist church, there was a young lady she is now my friend, Jacqueline, she was the medium of the day, close to main age and, and she was giving a message to a woman who was most likely Thai or Filipino because I was sitting all the way in the back of the church. And, and I could only see the back of her head on sort of a little bit of a cheek. And then Jackie says, Well, I have your mother here. And she gave a really good description of the mother and how she passed and all those things. And then Jackie said this, she said something in a different language. As he said to the lady, she said, I’m hearing this thing, and I have no idea what it means I have no idea. Like, I just hear this sound I need to give this to you. And so she gave it to the young lady in the congregation. And the young lady says oh my god, that’s my mother’s saying I love you in her own native language. That transformed my life in a in a second. And because I every one of the chairs that day, it was like 80 people there. And everyone just gasped. And there are other mediums. There were other people that were there that day, though, also were young mediums, and they remember this moment so vividly. Now Jackie did not go to college, she did not study Thai or Filipino, she says like really down to earth. And so when she said this in a different language in an Asian language that no one else in the church understood except the young lady. That was it for me. And I said to myself, well, if I was to try to do this work, I would like to be as good as Jackie. And so the Reverend in the church that day, she said, Well, we’re going to start classes in the fall, if you’d like to attend those classes, come and see me. I was unemployed, I had just graduated with my MFA, you know, who’s going to hire somebody with an art degree. And so I started attending these classes, and everything happened just really quickly. So what I thought was always my imagination. I just thought it was my imagination. When I was talking to the class, or when I was talking to nothingness, I just thought it was like makeup stuff. But it wasn’t. And so in these classes, within weeks, I just excelled. Because as time progressed, I was able to decipher what was my imagination, and then what was coming through from spirits. And I think that I would have to say that I studied also I studied journalism, and I knew how to interview so I knew how to do these interviews with people. And I knew how to be on the radio on all of those things. And so when I got to the point of with my art background, there was this great imagination. And then with my skills of interviewing, I found myself having the ability to interview spirits. And I would sit with them, and I would just ask them questions, who are you and I would break everything down to male female and then I would break it down into a family or friend and then I was a family that would break down to are you like the age and what relationship and our math everything out in my mind or it was almost like a 3d thing. And like how we have the tablets for the iPad today. And I was able to map everything out in my mind, okay, is the dad coming through and then it could feel like if he had other siblings if there were other siblings in the spirit world, I’m so in line things up like this farewelled was always behind me on the living people in front of me. So, it just started this whole journey of talking to spirits, it was communication with spirit on. And now so this was in the beginning years. And now I actually teach this and I teach the method that I use back in the day. But now it just seems to flow because I had this 100% trust that when I am connected and this is usually with the person that comes to see me, they know that I’m connected. If I’m not connected, then it’s just it is what it is. And I apologize, but I would say 80 90% of the time I am connected, and my hope is always that at least 90% is understood or people can connect to it if I’m not hitting the mark on a at 90% I don’t do a session that day. But because sometimes some things are left to interpretation or get into debate about like whether somebody something was teal, or sort of is bluish green tone, and I won’t do that anyway. So um, so yeah, so now I know that there’s an afterlife I know not even with a 99 it’s not even 99.99 I know that with 100% no doubt in my mind that there’s an afterlife Absolutely. And I think that it sort of gives us it’s an interesting idea because knowing that there’s an afterlife and you think just like well what happens on the other side? What happens in the afterlife? Where is the absolute there’s so many questions that come up. But then what I think is more important is that how are we living our lives here today, connecting to other people? Are we living our best lives? And are we living our kindness lives? Because when we pass away we have this review. And, and the question is, then could we have done something better?
Sirry Berndsen 10:41
And that’s the thing that I want to always sort of how I live my life and like I always make sure that I’m doing the best that I can. I’m a living my kindness life. Do I have compassion from a neighbor even when I find myself being a little bit annoyed with someone, I do a self reflection what is it that is in me that is causing this annoyance it’s an everyday thing because the other thing also like I live in silence, I love not listening to I like I never watched TV, if I do have a little bit of TV watching us like a movie or something, or TV show The lifts my spirits, I never watched my loves on TV, I just don’t see the point in it, watching the news don’t see the point in it. And it’s really about keeping my spirit light, with a capital L. and uplifted and, and even with when it comes to the music. If I listen to music, it usually is some sort of a curtain soft music in the music. Like, if I’m getting ready for a session, I may listen to meditative music. But otherwise, I’m in silence because I love a lot to be present in my own thoughts.
Victoria Volk 11:45
I love that. Thank you for sharing your progression and how you got into the work. And I’m curious as a child, did you recognize that you had kind of this?
Sirry Berndsen 11:58
Yes, so looking back, absolutely. When I was a child, so when I was growing up, we lived in a kind of a small apartments. The fire was in like two bedrooms. And it was really cramped. And so, we only had one bathroom. And I remember myself was a childhood. So, I’m really young at this time, probably from the age of like two up to like 678, I would go into the bathroom and I would lock the door. And I will just sit there on the bathroom floor. And I will talk to my imaginary friends. And I’ve heard later on that is very, very common with a lot of mediums. They talk to their Imaginary Friends; I would have full conversation with them for an hour or even longer until like somebody would start knocking on the door. He was just childhood conversations. But it was like full blown conversations. I remember as a kid I had like, there were two children. Oh, come and play with me. It was a boy and a girl.
Victoria Volk 12:51
Do you feel like most children the innocence of children? Do you feel like most children do because of their innocence of this gift? kind of you know of?
Sirry Berndsen 13:03
Yes. So, this is this is an I think a lot of people say the same people that are worked in my field, we can tell when a child is really connected. And I will say we are all psychic; we are born with a psychic gift. And if people are questioning there’s people that may be religious, you may want to look into Corinthian letters one through 14. It says there that people are born with gifts, that we’re all born with gifts. And so, then the question is what is the gift and children? They’re so receptive, they’re so innocent. And I would say about options up until the age of like maybe seven or eight when they start going to first or second grade when other kids may start making fun of them. The childhood innocence but also there’s this purity with the children that they don’t question like, they don’t question the silliness of things such as like, Oh, yeah, this is what it is. And I also think a lot of times infants are very, very young babies like when they’re just like not naturally verbal yet, when they’re like pointing into thin air. They have. So it’s really interesting that the infant’s retina, the eyes, they develop at a later stage. And I heard an interview on NPR about this. And I thought it was fascinating. So, they have a different sights up until a certain point in the lives and because I’m not a scientist, I don’t know until one disease, but they see spirits, they see them. And I think that every parent, they should allow them to just see them and be normal around it. When they sound like going bah bah bah and like pointing into thin air, pay attention to it, engage in a conversation. Oftentimes also children, they will speak to photographs, you know, and they will like babble. And they will say things, and nobody understands nicely what they’re saying. But they’ll have bah bah, bah, bah, photographs. So, Mike’s measures that use the children, they’re talking to someone because there’s so receptive.
Victoria Volk 14:56
Was that something that you hid then? I mean if you went to the bathroom to lock the door. And you know, it’s it’s something you felt like you couldn’t share?
Sirry Berndsen 15:06
Yes, because I was the youngest. And so, I was the youngest of my siblings, and let’s just put it this way, then they needed a punching bag. You know how that goes like when, because my brother at the time he was, he’s not much older than I he was a teenager. And then my sister is a year and a half older than I am. But it’s sort of like a yes, I hit the I hit it from them just to have peace and quiet around it so that they wouldn’t call me insane or crazy. I mean, they already did. You’re crazy. I just didn’t want to have that in my head all the time. So yes, I get it.
Victoria Volk 15:39
And the youngest too, so I get you.
Sirry Berndsen 15:42
Oh, you can get it, okay, you get is like, make them stop doing that. Make them stop poking me make them stop, you’ll know exactly what I’m talking about.
Victoria Volk 15:50
So, in the work that you do, you know, because people and you’re a grief recovery specialist. And so, I am too. And so, you bring a different aspect to your work, I think because of that. And so, in the in sessions with people, I’m just curious, is there one session that really stands out to you?
Sirry Berndsen 16:13
I’m not sure if there’s one session. I mean, there’s several sessions that stand out for me for different reasons. But I can say this. Before I did the grief recovery method, I was able to pinpoint pretty precisely things, events in people’s lives, that were in some ways, traumatizing, that caused grief that caused pain. But after I did the grief recovery methods, training, I was able to line things up in more in more of a clear fashion, if I can say that. And and you know how I would do the grief chart? The What is it called? The loss? Yes. Grant? The Yes, the loss graph. Yes. So now that that has been sort of embedded into my mind from the training, is, you know, the spirits, they just bring it up in my mind. And like yesterday, I did a session yesterday that I was able to use that their last chart really precisely, you know, so like, her parents divorced when she was about, like, everything started going downhill when her parents were like, when she was eight- or nine-years old things that are going downhill. And then they divorced when she was about 1112 years old. And then I was able to in my mind using the loss last year, I knew that when she was 14, her mom passed away so I’m able to line things up more more precisely than I used to. And so my I think that my personal grief is obviously I’ve gone through my own grief as a child, we all do. We all go through grief, we open our eyes to the world. I was like, okay, there’s grief. But I think because of the work that I that I’ve done in the past 20 years, I’m able to process things a little bit differently. And to share with you just really briefly, for instance, both my parents passed away, and I had a very complicated religion with my dad. And so when we, when I did the training, I did the last chart on my dad, of course, and I wrote the letter to my dad. And then when my mom passed away was interesting, my siblings, they thought it would be the one like lutens really kind of like sort of having a hard time with it. But I knew I wouldn’t. And the reason is because because of the work that I’ve done and because of the reef recovery, I knew how to treat myself really well. And when my mom passed away, I actually took two weeks off from work and when it came to her birthday, I took the day off from work but I took probably good six five to six weeks to Greece in the kindest most gentle way possible. Of course I saw and you know after she passed away a shard but it was interesting I would see her appear so what happened after a passage I was staying in her home and I actually ended up going into her bedroom and I slept in her bed and I’ll see her appear in the door you know I’m just talking to me and that was really comforting but at the same time it was really hard like heart wrenching but I kind of knew because of the work that I do that okay, I can always talk to her and um, she was just like walking around the home and I was like and then I would hear her say to miss you know, let’s see, call my name Siri. Now Siri and sort of in a very loving and daring way, or she would call me honey Siri, just to try to get my attention that I would just spend time with her. This after our passing. So I after took time off from work, because I knew that that was grief that I wanted to really heal. I’m not going to my work in sort of all patterning in pieces it was important for me to put the pieces back together
Victoria Volk 20:07
I think that’s what so many people do is they just quickly try to they don’t take that time and a lot for many people I don’t want to minimize it that that isn’t that is a luxury to be able to have that time to be able to do that can be a feel like a luxury for people especially with kids and you know if you have all kinds of things in your life so go ahead.
Sirry Berndsen 20:30
You see, I think is a cultural thing also though, because I remember when my grandma passed away my my mother’s mother when she passed away my mom took some days off from work and I remember this vividly that she would spend time just grieving and it’s a cultural thing because in my culture you are given a chance to grieve I mean for instance we get for some occasion we get five maybe six weeks summer vacation depending on who you work for minimum five and for maternity leave you get six months minimum of up to a year. Wow Hey, we’re tight about maternity leave. And so the culture that I come from it’s it’s Iceland it’s a very Scandinavian culture you’re allowed to be human you’re allowed to be with your family and even like I know in Denmark and Sweden or Norway they really encourage you to spend time with family and I think that in one of the Scandinavian countries they gave you I think up to two years of maternity leave of full pay you know and that is something that absolutely blows Americans away and so I’m coming from that culture one of my mom because the way yes, it is a luxury that I was able to take time off work but I also live my life in such a way that I don’t spend a lot of money I am kind of simple in my lifestyle like I don’t spend money on silly things. I’m frugal. First of all I buy secondhand clothing and I’m proud of it you know and I recycle a lot and so when I take time off I know that I will not be making any money at the time but I’ve prepared for those days and then I just live really sparingly during the time off
Victoria Volk 22:12
And I love those tips and I think to like you said it’s it’s setting your life up for what you value
Sirry Berndsen 22:19
Yes
Victoria Volk 22:20
and if you are wondering what people value just look where they spend their money, right?
Sirry Berndsen 22:27
Oh absolutely I’m like I don’t need I’m not I do not need to measure up to anyone I don’t care what like my neighbors to if they get a new car if they get a new book I just don’t care about those things those material things I don’t care about but yes my value is in family and being in the space that I need to be in emotional well being it is and you know what it is it’s self love. It is self love and I had this I had this thinking I used to be a flight attendant for a short while and they would always say that you know put dogs and mask on yourself first before you put on your anyone else around you. Especially the children because they you know they will survive you just have to take care of yourself first and so these days when I when I can like a point my point of myself when I say me and myself and I but I say this as a loving way because with me being fully there. I can be there for you. It really comes down to that
Victoria Volk 23:25
and that’s what I hear a lot to like the remote that makes me think of how people say when I say I’m you know a grief recovery specialist I tend to have a grief podcast you know, it’s depressing that sounds depressing. It Oh, and don’t look at it that way. You know I grief is a teacher. It is such a wonderful teacher. For us. It highlights in all the ways that what it shows up for us. It highlights illuminates what needs healing. Yes. in all aspects of our lives. Every cause grief touches every aspect of our lives, our money, relationships, our relationship to ourself. How we show up in the world, everything.
Sirry Berndsen 24:13
Absolutely. And what you just said how we show up in the world. Grief touches everything. And I recently heard Rene brown Susan’s ecologist and she said, Unless pain is transformed, pain will always be transmitted. is so true. And we are responsible for ourselves and not anyone else. Yes, our children, their well being. But again, it goes back to this. We take care of ourselves and then we take care of our children. It always goes this way. Number one is you and your essence and then everything else will fall into place.
Victoria Volk 24:57
Absolutely 100% Can you speak a little Little bit to how in some religions that mediums psychics Well, first of all, you’re not are you a psychic, you’re a medium.
Sirry Berndsen 25:13
So everyone is born psychic. So that is the first given we’re all born psychic is the sixth sense, you know how like animals, all animals, they have the sixth sense. versus if there’s an earthquake, the animals, they know how to run to the higher areas or regions, like when there’s a tsunami, they knew how to run up to the mountains. And so this is the sixth sense, it is born, it’s, it’s we have it. So everyone is psychic, but there are those people that dive into it, and are those people that choose not to dive into it. And I think though the more people begin to study science, they leave the intuition behind, although Einstein was really quite spiritual, because he has says things like he said things about the sort of the mysteriousness of the universe, and all of those things that you have to sort of when you have a scientist that is able to be also spiritual, you’ve got a really nice combination. So my take on so when it comes to the psychic and mediumistic, there are some people that are born with them mediumistic ability, so what it is, is a frequency, it is not just a frequency, but it’s also a source of frequency, it’s a vibration. And I used to say it’s, it’s in your brain. And they’ve also now they’ve done studies on the god gene. And I’m beginning to believe that there’s no such thing as a god gene. Because if you’ve looked at it this way, who would ever surrender the life to live in a monastery for like, a whole entire life or back in the day was none raised. And you know how, like, there’s some people that will sit in meditation, and they will just really thrive in meditation. So there’s, there’s a thing I believe, as a god gene. And so when it comes to the mediumistic things, I have been teaching these now for many years. Even people that say that, Oh, I’m not getting it, I have this intuition about how to get them to the point of being able to say what they are perceiving in their mind, because when it comes to spirits, it is reception and perception, reception and perception. And so if we begin to open up either the hearing or the seeing and allowing us, like if we allow ourselves to really sort of fall into this path of feeling spirit around us, if we feel them, we can see them, we can hear them. And that is just sort of simply blending and merging with them so that you can process what they’re bringing to you. And I think that the more of us that can come closer to the connection to spirits, the kinder, more wonderful Earth on planet we will have. And so there are people that are born mediums, but everyone is born psychic. So there’s this difference in those two. So, every medium is a psychic, because we’re all born psychic, but not every psychic is a medium.
Victoria Volk 28:03
Gotcha. And I you know, I personally have recognized that well, and you can speak share your perspective of this, but I feel like grief really kind of shuts off the valve of our intuition in a lot of ways. It did for me anyway, like I was very closed up in like us so similar. I was I wouldn’t have called myself atheist, but I really blamed God for everything that happened in my life and was like, nope, ain’t gonna do you know, by not going to have it and I believe to like, you go on the ground and that you that’s what happens, you die and there was no feeling a connection at all. There was no I didn’t feel it. And it wasn’t until probably in my early 20s when I heard something that shifted everything for me and really sparked a curiosity back in my heart. And that led me down a different path and changed my life really, which led to later grief recovery, which opened the floodgates like grief recovery for me my personal work opened the floodgates I became a Reiki Master that like just like put the valve on overflow, you know, so I feel connection now. I feel something I never did before. So can you speak to that? So bit more to
Sirry Berndsen 29:40
Yeah, so when you were talking I was just thinking like prisoners. They say about every seven years we go through these cycles and those people that are really into into astrology that know about the seven year cycle, I think it has to do with I’m not an astrologer. If I remember correctly, though, I think it it has to do with Saturn return There’s a term that I like I understand the basics of it, but I don’t understand the full extent of it. So every seven years so most likely when you went through your epiphany probably was around the age of 21 give or take, right?
Victoria Volk 30:12
22, yeah?
Sirry Berndsen 30:13
Yeah, it’s the same thing you know, I mean my case I think I was about maybe, I think it was maybe 29 or so do you know like, it’s really close to the 28th year and so it’s like every seven years you go through these shifts and changes and so it’s a seven year cycle. And it’s like they also talk about if you go into the ocean, they talk about the seventh wave is the big wave. It’s really interesting and also if you do numerology and you look at the the essence of numbers the light the number seven is considered to be the most spiritual number four, if it’s a life number, like if you calculate your date of birth, you can see what you llife path is. Numbers are fascinating
Victoria Volk 30:58
They are, I’ve always been fascinated with numbers I was an as a kid, it’s interesting because as a kid I, I was into, like, I was the kid that got like the poem book from scholastic palm reading book and, and the astrology books. And, you know, so I was that kid, but I really wasn’t like, I really hid those interests. I didn’t share those interests with, with others, you know, but it’s interesting how life comes full circle doesn’t, isn’t it? Like, yeah, full circle, like I’m coming back to all that stuff. And, and my faith, though, and that’s what I would like you to speak to, too, because I am Catholic. And I’m a convert, actually. And for anyone who’s listening who did not know that, and so can you speak to maybe that piece?
Sirry Berndsen 31:49
So yeah, so this is interesting because I’m, I’m getting close to becoming a minister. I’m doing a training. Yes, I’m doing a training under Reverend john and havik. She’s up the journey within and becoming a spiritualists minister. Because I love to study I love to learn, like if there’s anything that I can study, I’ll take it on. I even applied for a Ph. D. program a few years ago, and I got accepted, but at the time, I didn’t really have the time or the money. So I decided not to do it. But so yes, when it comes to religion, I think that theology and religion is an interesting thing. It’s such an interesting, fascinating thing. And I think because from my perspective, because I’m so open to different religions, I have people come to my office or have zoom sessions with me that are of all faiths. Granted, I come from a Protestant Lutheran background was just going to navy and but at the same time, never practice any of it. But we’re also pagan, because we believe in the old gods, you know, the Odin and Thor and Tiede and all of those Freya and, and then I lived in Saudi Arabia, with with a Muslim prayers, and it was really divine. My roommates at the time, most of them are Catholic. They were Indian, but some of them also were Hindus. And then, surely while after that, I lived in Israel. And so I went from the Muslim culture to the very Jewish culture. Then I have my office in Boston, or in Brookline, Massachusetts is very Jewish, they call it little Israel. And I seem to be able to flow into almost any religion there is because I don’t judge. There’s like, whatever you’re raised with, that is what you raised with. But this has been my perception, many religions, they say to you that Oh, you should not be connecting with the dead. And my heart has always been questioning that. And I think it has to do with back in the day, especially I’m going to only speak about Catholicism from what I have perceived in the last 20 years, because a lot of the people in Massachusetts are Catholic, Irish Italian Catholics. And so been there in the Catholic Church. People back in the Middle Ages, they could not read. And so they started putting pictures into everything. And so and that everything was in latson, to keep people away from the mysticism of the faith. And so they would have the services and lots and and so it was really with Martin Luther, that the Protestants that he was translated into a language that they understood. And so when it comes to religion, if people have the ability to separate themselves from their childhood religions have the do’s and the don’ts or you should do this or you should not do that with very rigid ideas. If people have the ability to separate themselves from that, and then dive into the mysticism of life, or mysticism of that religion, then they really see a lot of doors. Open up. And and I think that not just religion but it’s also cultural practices, you know how like when we think about just for instance, if we think about Indonesia, most of Indonesia is Muslim. And but then when you go over to Bali, it is mostly Hindu. And they have a totally different way of living, but it’s just an island of Indonesia, it’s the same.
Sirry Berndsen 35:28
It’s the same governments, but the big island is Muslim, and the small island of Bali is Hindu. If I remember correctly, I think there were also some Buddhists that I can’t remember. But there are some faiths that keep it really simple. And they really preach about living in compassion, which is a Buddhism, Hinduism, they helped many, many different gods. And then there are those that question like, Well, why are you worshiping all these different statues? My thing is, let them do whatever they want to do, like whatever brings them joy. And I also do know that there’s a lot of people that sort of frown upon the Islamic religion. And people that also again, they have to separate the ancient religion of Islam. And they have to separate that from what later on became, what governments were trying to dictate to the women, for instance. And why is that? Because they would have the women cover up on all of those things, like I questioned everything. But I do think that it really comes down to this, that God, or goddess, whatever you want to believe in, did not create religion, religion is manmade. And for that reason, if you can remove the sort of the history or the, the rigidness, of religion, you set aside, and then you go into the aspects of prayer. And what is this essence of God? Now I also have this thing that I think that god or goddess, I don’t see, God has a gender, God has an essence lives within each and every one of you are God, I am God. And when we see the godliness within one another, we then are able to see the kindness in one another. And I do believe that we all have God within us. And I find it kind of interesting sometimes I get into this conversation about people that are obviously like race with race within a very strict religion. Doesn’t matter which religion is they they believe that’s how, and early on in my work as a medium. It was a kind of an interesting this. This says you asked earlier you asked if there was one session that stands out from another. There are so many that stand out like I had, I’ve done sessions with people that pass 911 or their witnesses. And I’ve done sessions where there was murder suicides. And I remember this is years ago, there was a there’s a woman, her name is Beth. And she had three girls, and she was dating a guy. And the religion was not going really well. And one of the oldest girls and she decided to go to Florida with some friends. So she had flown out of Boston. Meanwhile, Beth was at home with a two young girls and the dog and the boyfriend was upset and he comes to the house and he shoots the youngest girl in the hallway. And then it comes into the bedroom where Beth is with her middle daughter and he shoots the middle daughter and sister her lights out. And then she was the mom. Mind you. He also showed the dog. And then what he did, he walked on to train tracks and he committed suicide. So now we toiled over a murder suicide with one of the girls was away. Thank god the girl was away because that kind of like saved the lives of the two sisters. And so when she had London in Florida, she was trying to call she was trying to call mom, but mom didn’t pick up and so then she frantically started to call her dad, her mom and dad were separated. divorced. So she started calling dad and dad Okay, he’d go over to the house and he’ll check out check up on mom when he entered into the house where he saw that the youngest daughter was shot in the head in the hallway and the middle daughter was in her mother’s arm shot in the head to what is interesting is that the two girls survived. But mom passed away. And so there was a there was somebody that came in for a session with me and I brought everything through and then at one point they said well, so he committed suicide. Where is he? So this is what was a huge learning lesson for me. So I was connected to Beth the mom and I was able to see everything through her eyes. Like I saw the whole entire thing unfold and I saw everything through her eyes. I remember that I asked her like well where are you see since he He shot you all, and he killed you on the bog. Where is he? So when bad people commit crimes,
Sirry Berndsen 40:10
they go to heaven, but they go to what I call special ed. And so there’s no such thing as hell on people, they need to sort of wrap their heads around, there’s no such thing as hell. This is one place that we all go to, but we go to different levels, it’s like going to a classroom or go to a school. And those that have done amazing work kind work, compassion work, they go into the higher grades is sort of like going to ninth 10th 11th grade. So what happened with him, he was put in isolation. And so in my mind, I could see her, she was able to see him through sort of, in my mind, it looked as though she was looking through like a one sided glass, but he did not see her. And so he was there in isolation. And, and then he had these spiritual beings, sit with him, and teach him about the lessons. But he had done. And so there’s no time in this world. And this is something that a lot of people have a hard time grasping, there’s no time in the spirit world. Now, would he be there for a one year and like in the perception of the humans on earth plane? Or would he be the mugger nobody knows. But it’s very clear to me that he would be in this isolation, and he was, is kind of an infant learning how to walk again. So he’s shown how to learn the impact of what he had done. And his soul also had to really work through the atrocities that he had committed. And with the spiritual beings, and they were guides and angels that we’re trying to sort of bring the lessons to him. Now, there’s another aspect of this also, which is Michael Newton, Michael nooner, he was a psychology PhD in psychology. And he wrote a couple of books, and one of them is destiny, or souls. And it’s a great book, and I recommend it to everyone. And it’s one of these books that you kind of had to read it. And then if you don’t quite grasp it quite yet, you have to sort of go back to it and read it again. Or you can also get an audio book. So he talks about and also Brian Weiss talks about life between lives. And so for instance, we could then also perceive it this way that perhaps this guy, he was put into this base of life, he lives and we all come to this earth plane with lessons that we need to learn, and the soul, how we work through those lessons, it is up to the soul to grow. And some things are already decided upon before we come to Earth. Francis, before you came, Victoria, it was already decided that you would meet your husband, and you would have the kids to know like, there are specific things that are decided. But also there are things in our lives that come into our pads that depending on how we cope with it, how do we cope with it well, or do we not cope with it really well, that can really, sometimes interfere or veer off of the road a little bit. But for the most part, we have specific lessons we have to go through. So I’m going to share this one thing that I’ve been going through this last year, it’s been sort of in the background, quite a bit in the past few years. But this past year really, really pushed me as a medium and grief person a little bit over the edge. And this is what it is when young people in this in this climate in this day and age when young people in America growing up, they are faced with so many drugs. And it is absolutely devastating to see in this past year 2020 I saw more suicides and overdoses in my practice that in any previous year.
Sirry Berndsen 43:59
And it made me think I reflect on this. Why? And it comes down to this and what like my philosophy today it comes down to this. I do not think it is the parents fault. But I think it is the I don’t know if it’s the government’s fault, if it is the society how it is built up if it’s the school system. I’m not here to play like I’m not here to blame or point the finger but I think people need to be aware of what is going on. When does it start on where does it start? And so recently, a friend of mine, she said she’s got a couple of teenage girls, and she said to me that Oh yeah, like one of our daughters is on Prozac. And I thought to myself like was his only like 14 like, that’s really young, isn’t it? And she’s all well it’s considered to be normal like the, the nurse will call it call them up to the nurse’s office. I’m like okay, here’s your medication for the week or for the month. And I think it was like this is absolutely insane. But it started making sense to me. And so I’m even in America, I think it’s probably America is one of the most medicated countries on the planet. And where does it all starts? is Big Pharma? What does that lead into? Like if a child is overactive is a child is just really hyper that is immediate, like there’s a label on it, it has add, or it has ADHD. My thing is, Well, how about fixing the child’s diet? How about taking out all of the ingredients in the food that are not supposed to be there? If you cannot, like if you reading a label on a food product, and you cannot understand it, why are you feeling that way? Child child references, Pop Tarts? What’s in it? All these ingredients that are just nobody can pronounce toxins? What does the toxins do to the gut bacteria? We talked about children that like three or four or five years old, this is where it starts. And so the responsibility really goes down on that aspect, it goes down to the government, because the government says, Oh, yeah, you can put these things on the food, and that’s okay. And so the children becoming sick, the microbiome is becoming sick. And then they begin to develop these behaviors that are not considered to be rational. And then they roll up in a system that Oh, yeah, let’s suppress this symptom. And then if that doesn’t work, let’s try another one. Instead of instead of getting to the root cause of the issue, because the parent may be the most loving, caring parents, but they may not know what they’re putting the child’s bodies. And so as children are growing up, and then they like they’re put on Prozac, or they put on Xanax or they put like they put on medication for different things that should be treated, it’s not suppressed. And so this past year, I’ve noticed that children I mean, to me that children from the age of like, 16 1718, up to like 20 456, the amount of young people passing because they cannot cope, suicides, overdoses, that has really touched me on a grief level in this past year to put up like, I’m going through this whole ups, I’m upset about it, I’m angry about it. And but I’m turning that anger and frustration on sudden as I’m trying to turn it into more education. And so when people come to my office, I, when I intuitively I know, I know that like this little tiny little tweaks that they could do to get it better. You know, I point out to them, I’m looking to the microbiome, because the tummy is the second brain. And I tend to think of it this and we have the brain, we have the heart and we are the tummy. We have to love a three to work together in unity, to have a healthy family. I went off a little bit but yeah, that’s this is in the past year where my grief has been sort of absorbing this young people of America, exceptionally talented people with such great hearts. You know, it’s just my heart goes out to the children, to the parents, to the mothers to the fathers to the siblings.
Victoria Volk 48:13
And it’s, I think to it comes down to the lack of support within a family unit, whether it be support from the community or support from the healthcare system, which is overloaded already, you know, there. And I think, when I hear my bandwidth again, is we talk about mental health. Yes, I wish we would take the word mental out of it, which would be emotional health. Yes. What is what will serve us in our emotional health? And you don’t work through emotions by popping a pill.
Sirry Berndsen 48:55
Exactly. That is likely that is exactly what I’m talking about.
Victoria Volk 48:59
I’m reminded of a podcast interview I did a while back with Jordan Brody. And he was he’s an openly gay man, and really struggled as a child with bullying and things like that, despite having a really supportive, loving, you know, father figure in his life, he, you know, just had other challenges, and really embracing right being a child that recognizes that they’re different. And where he obviously said he felt different, but he was put on medication as an eight year old, an eight year old. That’s an anxiety you know, and depression and add, I think ADHD, one of those, but he was brilliant. He was really smart. He was in a, like a gifted program. And he found himself pretending to be dumbing himself down for others and has created so much grief, like he couldn’t even authentically live who he was his, his essence, his soul of what was his soul was wanting him to be and live into. He really suppressed all of it. And it started with, you know that medication didn’t help. Right? Right. And as an adult, you know, when I interviewed him for the podcast, he has been off medication, he’s not on medication anymore. He’s living his best life, you know, but he dealt with addiction, then, I mean, that set him on the stage of going down a path of addiction. And within a week, I believe of our podcast interview, his brother passed away of an overdose. And he came on the podcast, actually to talk about a loss of his best friend to addiction. Yeah, and you know, so it’s obviously was really it’s prevalent in his family. But why? Why?
Sirry Berndsen 51:03
Why? Well, I’ve been like this last few month I’ve been digging into the why and I think that um, and you’re so right, this should be this should be called emotional health or emotional well being. And, and I think that if you really get into the depth of things, because I actually studied journalism, I studied must mean media. And within that, it was also the the quote, unquote, the propaganda how to sell like there’s not marketing, but how to sell an idea. And if you really think about it this way, when you have large companies, like pharmaceutical companies, putting money towards doctors or hospitals, and paying them, it starts from an early age, it starts from a well with visits with an infant, and well visits to the to the pediatrician now includes years, not just the weight and everything, but it also includes vaccination and large nations. I question those two today, simply because we do not need to put what is it 72 vaccinations and in an infant, and within the first two years in America, it is absolutely insane. And so I think that it comes down to this, the big pharma, they have way too much power. And from the moment a child is born, they have way too much power in a child’s life. From a well visits to the first few years, the more that can give like the more that can give pills to the children. And that’s where it starts. So in other words, I think that in so many ways, the big pharma, they are sort of the they’re the drug dealers with the license with a golden license. I think the other thing also, I thought about this a lot, I don’t think that a lot of doctors, pediatricians are educated about the side effects on the long term effects of these things. They are, I think a lot of them are just going by faith. Somebody a rep comes from a rogue company, and they say, Oh, we have these these these is seen as sort of like a shopping cart. Would you like some of these so you can give to patients? And I think this is where it all starts. And I really my heart goes out to the American youth because of this. Young people, like you just said with him. He himself was like he was put on these medications from an early age. And then he was on the podcast to talk about his best friend and then his brother passes away. When is enough enough? Because it all starts somewhere. Yeah, you know, and instead of instead of putting them on drugs, why not then create a group gathering we have these young children coming into someone’s a wellness center, and they learn to sit in meditation or they learn to sit in the quiet and they learn about nutrition, and they learn about the blueberries and raspberries and they love like they learn about the herbal, herbal remedies and they learn about the wonderful things that nature gives us. Like I said, I started listening to audiobooks by Rudolf Steiner. And he was the one that sort of started the whole Waldorf. Are they the Waldorf School is that based on his ideology, and there’s actually a website some guy, he’s read all of his books, it’s on Rudolf Steiner audio.com I highly recommended is sort of an old fashioned way of writing, reading and listening to it, but it’s well worth it. But I picked that up. The closer we can come to nature with our children, the brighter future we will have with the children and the more we move away from the Big Pharma on the popping the pills, the healthier youth we will have, it’s the future of America lives in the arms and the hearts and the hands of the youth and the parents, but it’s the youth of America that will be able to build up the country to its greatest glory that I want was.
Victoria Volk 55:11
It makes me think of when you mentioned about like, you know, a center, like a youth center where they can learn these different things. It’s like mentioned meditation, it’s learning coping skills. Like, here’s the thing, like, as adults, we don’t necessarily cope very well, either. You know, it’s like, because I feel like, and I’ve said this so many times, and you can, I think you’ll agree, but adulthood is childhood reenactments,
Sirry Berndsen 55:36
adulthood is childhood via likeness, I can see that.
Victoria Volk 55:39
Every belief, thought idea, like everything that we are taught as children are our personal experiences that we internalize. And we project all of that, as adults, like we. It’s like, like that cycle, that seven year cycle like these. It’s like, you mentioned that the soul has this lesson it needs to learn. And it was actually mentioned by Dr. Chris Kerr, who is on the surviving death, he talked about end of life experience and has a book death is by the dream and he was on the podcast and talked about one particular experience of an old man who was a war World War Two veteran who, at the end of his life, the deepest pain that he was carrying all his life was came back to heal him, like his comrades came back to heal him. Of all the because he his job was to transport the dead on the ships, and his comrades came back at the end of his life. Oh, wow. And it was, you know, so I think of that and how, like what you said how the soul has this lesson, these I, I feel like after learning about end of life, going through end of life doula training and talking to Dr. Kerr, our soul has this experience at the end of life, probably beyond based on what you what you shared, right?
Sirry Berndsen 57:11
Right. Because I mean, then we have other lifetimes. When it comes to presses with the past life, past life regression. We have lifetimes before this lifetime and our minds. We think of everything as being a timeline. And it is in that light, like on the earth plane, it is a timeline. Everything has a minute, everything has a second, everything has an hour to it, everything has a calendar to it. But in the afterlife, there’s no light, like there’s no timeline, with a set of certain concepts. It’s hard to grasp. And going back to what you just said about touch, both occur. I love his work, I think you also want to was a despot vision. So it’s not like half remember, death has been a dream, or death. Okay. But that was about a dream. Yes. So I was actually talking to a friend of mine in the UK this morning, who’s a doctor who is about to be transferred from the end of life care, being a physician at the end of life care to the ER doctor and, and I said to him, you know, you’re meant to go there. And I think you’re going to be entering the space of prayer. And he’s like, What do you mean, he was pausing. And I said, Well, it was going to be the place of prayer. And, and I talked to him about Christopher curve, thoughts occur. And his TED Talk. And I said, years ago, it did, especially for a woman, this is a long time ago, I did a session that I never forget it. Most sessions I collect, they close my mind for the glimpses of a few sessions that stick in my head. So there was a young lady that came into my office and, and I knew nothing about her. Like, I never know anything about other people. Like when people come to my office, I just look at the first name on what type of session that booking. That’s all I want. I just want the true first name, I don’t care about the last name, they have to have an email so that I can actually email them information. But the rest of it are just first name and what excuse me what type of session and so I knew nothing about her as she comes to my office. And before I was going into my office, I felt there was this amazing light around her and I didn’t understand what it was. But it was almost as if there was this huge choir of light beings that were like following me to this appointment. And in my mind’s eye, I saw her as if she was she the the person in my office, she was done in front and central like the soloist, and this big choir of lights of beings behind her. And then in the session, I said to her, like I see that you work with people in a healing in a setting with the hospital in a healing setting. But there’s a lot of people in the office life I want to come forward and thank you and there was this immense It was like a way was a tsunami of this light. And there was a tsunami of prayers and gratitude towards this woman. And I was able to bring through, like from that big choir, it was like 1000 people more, I was able to bring forth like a couple of them on a gave a really good description of them. And then she said, Well, this was one of my last patients. And so this woman, she was an emergency care physician for many years in the ER, and helping people, you know, survive or die. She was a very prayerful person. And so, and it was interesting to me to see it from the mediums perspective, that she is interesting also, because she was a scientist, so she didn’t see it. But I saw it, and I saw this, it was sort of like the massive amount of it was like the wave of lights behind her was just immense, because she was working in the medical field and helping people die or alive, bring life or bring them into the afterlife.
Victoria Volk 1:01:06
I think the whole theme of this conversation really just comes down to it boils down to just connection, this spiritual, spiritual connection. Yes, of the essence of who we are our own spirit, and how we’re all connected to each other.
Sirry Berndsen 1:01:28
Absolutely. And I think also the other thing also is how close we are to the spirit world. But I always say they walk, they walk with us, they walk among us. And the closer we bring them into our lives, the closer we bring in the angelic energy, the easier the Kinder, the more loving we become, the easier life will become like when things when we surrender. But instead of going against the instead of going against life, but when we surrender to the gentleness or the wave of life, we then create an easier path. And I see, I think it’s the closest on the spirit world.
Victoria Volk 1:02:14
I see this parallel of we medicalize death and dying, but we also medicalized life.
Sirry Berndsen 1:02:23
We do. That is such a good point.
Victoria Volk 1:02:24
Right? both ends of the spectrum. There is no there’s no, where’s the balance?
Sirry Berndsen 1:02:30
Well, where is the Yes. And it has become so scientific. That we have lost sight of the spiritual.
Victoria Volk 1:02:40
Detached?
Sirry Berndsen 1:02:42
Yes. Because we are spiritual beings having human experiences.
Victoria Volk 1:02:50
In a nutshell, yes.
Sirry Berndsen 1:02:53
Yes, we are. We are divine light beings. Having human experiences and grief.
Victoria Volk 1:03:04
Yeah, its a part of it. A healthy part of it.
Sirry Berndsen 1:03:08
It is a healthy part of it. I also, I also do believe that the power of prayer can be so immense, because prayer is such a simple thing. And I’m not talking about prayers in heavenly Father, I’m not talking about those types of prayer, but I’m just talking about the simple voice within your heart, the simple chants the simple. Oh, God helped me get through this day, or like, it couldn’t be very, you know, or God, protect my children. Or if even if we want to call on our ancestors, like mom or dad or grandma, please protect my child today. Those are in my mind in my heart. Those are prayers. And I do and I know that prayers work. I know the power of prayer is immense. And I do feel and I know that for sure that if we went back to the basics with children, and we brought in more meditation, the power of prayer on the essence of spiritual living on the earth plane. We would then have, have a future that is so much easier. And prayer doesn’t need to be rigid. Prayer can be so simple. bring light to this person. bring light to this person. That is it.
Victoria Volk 1:04:24
It’s really letting your heart live in intention. And yes, that energy out with intention.
Sirry Berndsen 1:04:27
Yes.
Victoria Volk 1:04:31
And I can say personally, prayer did change my life because I prayed for my husband. I didn’t pray for him. I prayed for someone.
Sirry Berndsen 1:04:43
Yes.
Victoria Volk 1:04:43
Now this was me not going to church ever right?
Sirry Berndsen 1:04:46
Yep.
Victoria Volk 1:04:47
Please bring me someone who is good for me. That was it was a very simple prayer, bring someone into my life who was good for me. And I knew my husband. For seven years. We were friends. Yeah, but we had, you know, when he went his way I went mine, we met a junior year in high school, when he moved to my town, but we did not date we did not, there was no like love connection at any point during that time. And with that prayer, all of a sudden, he was like, front and center, relentless in wanting to be in a relationship with me, to this day, it’s like, you know, like, we didn’t look at each other, like, Oh, I’m gonna marry you someday, in high school, or I want to date you know, seven years later, seven years later, right? And I still, like, there is no explanation. Like, he really didn’t can even give me an answer. Really, like, yeah, prayer changed my life. And that, that set me on finding a relationship and discovering a relationship with God again, and my spirituality and faith and all of that, like it just Yeah, a very defining moment in my life.
Sirry Berndsen 1:06:11
But I think also this goes back to those that prayer does not need to be a religious prayer. It can be if people want to, like if people want to go to the church, or the temple or the you know, wherever they want to go, and they want to do their prayers in front of their statues. They can do that, like messes with me, I pray all the time, my family, or I go out in nature, I sit on the beach, I will pray. For me, prayer is a part of breathing. You know, it’s just a part of being and it’s a part of breathing. And I pray for the strangers. And I think that when we find ourselves being aggravated or annoyed, but someone needs to pray, we need to send them even more lights, so that we can heal ourselves from that frustration, from that annoyance.
Victoria Volk 1:06:58
It makes me think of whole oponopono the four steps of it’s actually just mentioned it with a client yesterday. It’s I’m sorry, please forgive me. Thank you. And I love you. I think before I’m not even sure if it’s in that order. I I’ve have a couple posts coming up about it. But you because really, it’s it is what is within us that feels provoked, you know, what does this person provoking in me, what is it about me that needs to heal that feels provoked by this person? or you know.
Sirry Berndsen 1:07:37
It also goes back to the grief.
Victoria Volk 1:07:39
It does!
Sirry Berndsen 1:07:40
because what happened in our lives that causes grief, though, we then have to reflect on.
Victoria Volk 1:07:49
And that’s what grief recovery does, right? The method itself does. It brings to the forefront exactly what needs to be healed. And what to work through in a guided supported evidence-based way, right? It’s Yeah, yeah. I’m partial, I’m partial.
Sirry Berndsen 1:08:11
But I was interesting, because you also mentioned earlier that, um, when someone has such you that, like you said, some of you were grief, grief recovery person, and they said, Oh, that is depressing. That was their perception. But I think that we, when we, when we that understand grief on a deeper level, when we come out on the other end, we see all of the gifts coming to us what a gift it is. You know what a gift it is, but I met you on what a gift it is that I met a couple of your friends. It’s a gift, and it all starts with one person.
Victoria Volk 1:08:48
Yeah. Because we’re all connected.
Sirry Berndsen 1:08:52
We’re all connected. And we’re all gifted and we are all a gift to one another.
Victoria Volk 1:08:56
So I want to really give something this has been amazing so far, but for Grievers listening, what is one tip that you would give are hurting heart listening today.
Sirry Berndsen 1:09:09
So this is coming from me as the medium. I think with grieving with grieving people, and I think especially this is the thing I often reflect on what is hardest grief. I, um, there are two rooms that I have perceived to be the hardest ones, and that is the loss of a child. For both mom and dad. Oftentimes fathers have a hard time expressing it mothers that seem to have a little bit of an easier time expressing grief when they lose a child. And it doesn’t matter how old the child is. It could be 3 million old it could be three years old, but the loss of a child is probably one of the hardest. And then also when people have been together like life partners, and when a woman becomes a widow where our mom becomes A winter and they’re so in love with their soul partner. Those are two of the hardest ones it is more. But I think also went out when a young child loses a mother. That’s another that’s probably the third one that is the hardest one to sort of, cope with I think but even loss of a pets can be really hard for a child, but when people um, so for me as the medium when people lose someone, I say, take time for you. Sit with them, sit with them memories, listen to the music you both enjoy and look at the photographs when you feel ready to do so. If you know and here’s a big deal if you know that someone is dying. If you have an older parent or grandmother who was dying, sit down with them and record their stories. videotape them. If you can take pictures, get your phone out, record them and say, Hey, Grandma, tell me about when you Grandpa, when you met, those stories become absolutely precious, more pressures on any stuff. Having someone’s voice on a voicemail is precious, having someone’s having someone telling a story on a video is precious, prepare for those types of things. Because once they’re gone, their voice is gone. So in prep, so in preparation for loss, I think that do everything that you can to cherish each and every moment. Now we don’t always have the time to prepare. But after someone passes away, take time for yourself. take time off from work. And if there are people in your life that are not being helpful, supportive, or conducive to your grief, let them go, someone else will replace them or they will come back into your life if it’s really worth it. But take time to grieve, be kind and be gentle. And let yourself cry. Like just let the tears out. Go into nature, hug a tree, sit in the grass, go on the beach, do anything and everything that really brings you joy. And do it over and over and over again until it gets a little bit easier. One thing that I did want to say is after someone has passed and and you really feel like you want to connect with them. There’s one thing that I’ve said to people make time for the spirits.
Sirry Berndsen 1:12:39
Write them letters, but doing this as a way that if you were to For instance, if you sit down every single time at the same time, let’s say it’s a Sunday evening at 7pm. Or you know that you’re going to have some time during the middle of the week. And let’s say Wednesday evening at 6pm. Make an appointment with your loved one it was pretty well and sit with them. Listen to your favorite music together, have the photograph on your lap have the photo of Next you have a piece of paper and a pad and write them a letter and tell them how much you miss them. And, and if you feel they are coming close, listening, take time, and just write down what they would say to you. Because that is true spirit communication, because that’s when you have the flow. Going back and forth, you say one thing, I miss you so much. And then you may hear this very subtle voice in your head. And it’s there as if they’re back. And they may say the same to you, I miss you so much. It may be a child in the spirit world. And let’s say a mother sits down. And let’s say a mother lost a child unless the child’s name is Rachel, I’m just making up, you know, Rachel, or Amanda. And let’s go with Rachel. So let’s say a mother sits down and she said Rachel, I miss you so much. And then the mom may then begin to feel the voice of Rachel in her mind. And if she brings her closer, if she brings her daughter closer, she made them feel her in her heart. And then she may feel as though her daughter’s speaking to her, write it down, write letters to your child, write letters to not want to miss farewelled make the connection and hold on to those letters and you can always read them back. The more you do this, the more you deepen the connection and the one thing that I would also highlight if you can if people are sitting inside, light a candle praying, pray that they come to you pray that they merge with you, and they will come because they hear your thoughts. So I think that after someone passes away, I think that um, when we feel that our spirit is ready, bring them close so that we can merge with them and we can really, truly communicate.
Victoria Volk 1:15:02
Beautiful. I love that. What gives you the most joy and hope?
Sirry Berndsen 1:15:07
I knew you’re gonna asked that because when I was I was thinking um I would say nature nature because it’s interesting nature and animals. Nature is always there for me, nature never feels me. I can walk outside I can walk to the park I can walk to the beach, I can sit there and I can be one with nature. And it never ever fails me. Even in a snowstorm nature’s there. I would say nature. Next up to that is the animals that eat terian I was a vegan for a little while. When I go home to Iceland. I will have fish shrimp, but that’s as far as I go. So animals is the next thing and when I get a chance to sit with dogs or cats even the other day I’ve got a chance to talk to a duck than Shelby and I got a chance to sit with a goats and the god fell asleep in my arms you know I have this connection with animals kind of like St. Francis of Assisi I have because we can also communicate with animals just like we can do with people is the same vibration is just same energy. So I would say nature and animals so that brings me joy nature. And the I think also the mystery of the cosmos the mystery of the universe the mystery of all there is the mystery that lies beyond that brings me joy.
Victoria Volk 1:16:43
I love that because it sparks curiosity for me those things yeah, that brings me joy curiosity brings me joy.
Sirry Berndsen 1:16:51
You look at the stars and you wonder what is there.
Victoria Volk 1:16:55
I have a little follow up to our session that I had with you. And you had share during our session about my youngest and her connection with nature and and that she will Sunday understand the the importance of bees and just nature itself and herbs and in animals just she has a deep connection with animals and things like that two things. I mean, I want to share with you to follow up from our session. And one thing was we just very recently, this is a family from California came to our area and they brought their bees brand new company, they wanted to expand bought a place in our area. So they plan to come back year after year. And they put bees on our land. So we can have honey, we will get some honey and so interesting so that I thought oh my gosh, like that’s crazy. Because the this we’ve you know, we’ve been here for like 1112 years, you know, never had the opportunity to have bees on our land or anything you know, so that’s I found that fascinating. The second thing is a baby pheasant had just walked into my husband’s work all by itself all by itself, like the mother I don’t know if it got you know, yeah. Wouldn’t lost his mother whatever, we bring it home. And my youngest was tried nursing that thing and not nursing, you know, like, yeah, making sure that it got what it needed. And she we had some birdseed and stuffers, some feet like stuff and she was crushing that up and feeding it by hand and putting water in a syringe and, and just really nurturing this baby pheasant just a little chick just at bay thing. And she tapped her foot and it would come to her outside and just really connected to this little baby pheasant Well, after three days, it did die. And she was crushed. Tears. We ended up burying her it was a female. But I just thought back to what you had shared. And the words that came to my mind was because she wants to be a veterinarian. And I know I’d share that in our you know, after you had shared all that I said, Well she wants to be a vet. And why came from for me after that happened was she needs to be a vet for an animal sanctuary. Yes. A sanctuary. Yeah, that’s what kind of came up for me I guess, after that experience.
Sirry Berndsen 1:19:32
So you know, when I when I do my work they flow through because like I put my I put my ego
aside. And I was describing this a couple of days ago to someone I would say that 10 20% of my left brain is in full action asking questions. But then I will say at present our brain is in full flow with spirit communication. So the whole life review is really coming from spirit. It is your story and not even from Got the young kids you know I even forgot the you like not talking to you I forgotten the session I find it isn’t that interesting is that I don’t know you and I don’t know your family I’ve never met your daughter um isn’t it interesting how this spirits and I don’t remember like if anyone came through for us it’s like my memory is none like his nail but I find it interesting how this spirits how they know these things this this timelessness that is just absolutely divine and Bs you know it just is bs Isn’t that interesting? Yeah. So I just had to show follow up was wonderful and I do hope as it becomes that for and also I hope that he becomes a holistic that because holistic dice they may I mean they make miracles happen holistic buts and I really hope it’s going to be for a sidetrack but you know what is interesting when I was seven years old I there I remember this vividly To this day I buried my first bird and I remember the lights the light around me and my friend when we hold held a little bird, I think it was a robin or something and we held it on we were so just devastated by the death of a bird and then we put in a little hole and I still remember this like was yesterday the light around us and I was seven years old again seven. How old is your daughter?
Victoria Volk 1:21:30
12
Sirry Berndsen 1:21:32
Oh so she’s going to be a vet?
Victoria Volk 1:21:36
I don’t know we’ll see. I guess she wants to, that hasn’t changed it’s been few several years but she’s said that
Sirry Berndsen 1:21:46
you can even if she even if she ends up not going down the road of being a vet then she can always be a farmer. And she can nurture love the animals and the plants around her.
Victoria Volk 1:21:59
Yeah, she’s very much Let’s get her hands dirty playing the dirt.
Sirry Berndsen 1:22:05
So she’s probably incredibly healthy.
Victoria Volk 1:22:09
Yeah, she is, yeah.
Sirry Berndsen 1:22:11
Most kids they get to play on the dirt. They’re the healthiest ones of all.
Victoria Volk 1:22:16
Yeah, and we’ve gotten so far away from that to like I remember playing with old tractors and cards and making roads in the dirt and you know now it was outside all day, every day.
Sirry Berndsen 1:22:29
Yeah. I was just a way I was away from my playground was the beach and and it was like walking around to the seaweed I’m playing with the seaweed and also digging in the dirt and it was a childhood. It was a magical childhood. Outside all the time and I remember when I was 10 years old in the summertime we could stay outside until 10pm when I was 11 years old, we only were talking about like June July August, we could sell 10 until like 11pm and then when we hit like 13 we’re able to stay on till midnight. Keep in mind the summers in Iceland. The sun doesn’t set so it’s daylight all night long. So there’s no difference of daylight.
Victoria Volk 1:23:14
I saw a video actually of a woman I made on Instagram are some things from Iceland and she documented like documented that and I’m just like Wow, I can’t imagine I can’t like you know, it’s just something you can’t wrap your head around.
Sirry Berndsen 1:23:31
Have you know, like for instance, when we talk about nature and magic. So now we have a we have in Iceland we have volcano that is erupting. And there’s not one of these big plumes that is coming that is coming up but it’s one of these with a lava field growing and growing and growing and I was in Iceland the other day and and I had been asking people around like you know how difficult is the track to get up there and there’s a well it’s gonna be like an hour and a half walk and whatnot and I’m not in a good shape. Because I live in this city and I don’t get into nature much but I was in a car accident a couple of years ago until my like I’m still paying the price of that, like my walking and everything. But I thought it was like you need to be there. And I walked for probably about an hour and a half up this hill and sort of up this hill and Donna Valley and up another Hill to sit on top of another mountain and I was just watching this lava just sort of spewing up out of this tiny little tidal mountains a mountain that is beginning to be created. I saw this lava coming up and I saw the lava flow and the magic of the earth I mean just thinking about the force of nature that is below our feet coming up through the cross and just flowing like with the black and with a red fire and and it was just absolute Magical to observe because I was sitting on top of this mountain it started raining and that is it started like then it was sleet and then there was hail. And it was freezing cold. But I loved every minute of it. We just observing nature coming to creation.
Victoria Volk 1:25:23
When we think we’re in control, right?
Sirry Berndsen 1:25:25
Oh, yeah.
Victoria Volk 1:25:26
Nature reminds us. No, no, you’re not.
Sirry Berndsen 1:25:30
Yeah. Anyway,
Victoria Volk 1:25:31
oh, this was so wonderful. I feel like I could have talked I could talk for another hour easily. But is there anything else, any guided message you feel like you would like to share
Sirry Berndsen 1:25:43
When it comes to refund laws, I would like for people to go within and tap into the depth of love and the depth of love loss. Mercy doot doot. Together, love them love to come to the surface when you’re ready. And when love comes to the surface, you know that you will have this wisdom all around you and you will conquer anything and everything around you. And know the spirit is always in your hearts just so far away. The spirit is always around you. And spirits through the power of prayer will help you work through grief.
Victoria Volk 1:26:23
Thank you. Thank you for being here.
Sirry Berndsen 1:26:27
Thank you so much, Victoria. You’re awesome.
Victoria Volk 1:26:30
Aww, right back at you. And remember, when you unleash your heart, you unleash your life. Much love. From my heart to yours. Thank you for listening. If you liked this episode, please share it because Sharing is caring. And until next time, give and share compassion by being hurt with yours. And if you’re hurting know that what you’re feeling is normal and natural. Much love my friend.
Death/Dying, Grief Stories, Grieving Voices Guest, Grieving Voices Podcast, Miscarriage, Pregnancy & Infant Loss, Widowhood |
Arielle Arbushites | Widowed By Suicide at 29 & 3x Not a Mother
SHOW NOTES SUMMARY:
Arielle wasn’t a newcomer to grief and loss by the time her husband decided to take his own life when she was only 29.
She shares the highs, lows, and fears of navigating all of the unknowns and changes that came with losing her beloved, Rick. She wondered if she would ever love again, and because she and Rick couldn’t have children together, she then had to face the possibility that she would never become a mother. Would she meet someone who would want to have children? Would she meet someone while she’s still young enough to begin the chapter of parenthood? So many unknowns and the loss of hopes, dreams, and expectations.
Spoiler alert! Arielle does eventually remarry but wedded bliss doesn’t last long. After three miscarriages, she and her new love wondered if their mutual dreams and desires to be parents would ever come true.
Every miscarriage was different, and she shares exactly how different they were in this episode and how she found her way to wellness. She also shares the one thing that helped her soothe her own soul, not to mention how she found her own way to share with others how she was feeling without the pressure of needing to have what are often uncomfortable conversations.
RESOURCES:
CONNECT WITH ARIELLE:
Victoria Volk 00:01
Thank you for tuning in to today’s episode of grieving voices. Today my lovely guest is Arielle Arbrushites, and she is a licensed master social worker specializing in the field of grief and loss. She’s also experienced her own grief and loss. And we will dig into all of that. Thank you for being here.
Arielle Arbrushites 00:25
Thanks for having me.
Victoria Volk 00:27
So, let’s start with how we connected and and the losses that bring you to the podcast.
Arielle Arbrushites 00:35
Sure, sure. Well, we connected on on Instagram, I was checking out your account and I, I believe you are checking out mine and I have started, I guess running with more circles of the grief and loss crowd on Instagram in the last couple of months. Um, I am a widow. And I’ve been widowed for almost seven years, it’ll be seven years this coming May. And I, I’m widowed because of suicide, my husband took his own life. And in addition to that, I’ve also experienced three miscarriages. And then I had that lovely diagnosis of recurrent pregnancy loss or multiple miscarriages, and you know, very grateful to have a baby son now, but it took quite some time for me to have a living child. So, between those two things, I sort of joke around that I’m a good poster child for disenfranchised grief because suicide loss and miscarriage are just types of losses that people don’t talk about, or at least they don’t talk about, in the same way as other losses are talked about. And I just feel as a social worker, that it’s very important to give voice to those losses because it normalizes it for people, it validates their grief and their feelings. And those things are very, very important to me. So, I’m a writer, I think first and foremost. And then second, I’m a social worker. And those two things, they just they melt together pretty well.
Victoria Volk 02:09
Yeah. And actually, I think I reached out to you. In fact, on Instagram, I think there was this immediate connection for both of us. And also, to like you work in the hospice arena.
Arielle Arbrushites 02:21
I do, I do. I started out as a hospice social worker, you know, as we say, in hospice in the field, meaning traveling from home to home, and taking care of hospice patients in their homes, whatever their home might be. So, whether it’s a house, an apartment, whether it’s a skilled nursing facility, and assisted living facility, whatever they would call their residents. I was doing that kind of work in hospice, and then just a little over two years ago, actually became a manager in hospice. So, my title now is manager of support services, which means I oversee all of the hospice, social workers in our hospice agency, all of the spiritual counselors, all of the bereavement counselors and the volunteer coordinator in that program. So that is really cool. And the way I explain it to people who aren’t familiar with Hospice is I’m basically in managing everything non nursing related. So, anything that’s that’s not nursing, it kind of falls under me, which is cool. And I don’t really like to consider myself a boss. I like the term leader a lot more. So, you know, in leadership, and in my job, we talk about that a lot. I really want to be a leader, not a boss, and I don’t micromanage, and I like to work with people not above them. And, you know, the the hierarchy is not important to me at all. And, of course, first and foremost by profession. I’m still a social worker, and I do still see patients in hospice. I just also happen to manage 25 people at the same time, so I don’t see as many patients as I used to.
Victoria Volk 03:49
So how did you get into this work? Was it those losses that you experience?
Arielle Arbrushites 03:55
It’s an interesting question, because I think people ask me that all the time. If they find out about the losses that I’ve had, and I actually my husband died before I was doing hospice work. However, I had interned for hospice, when I was getting my master’s in social work. One of my field placements was in hospice. And that’s how I knew that I was called to do that work, and I really wanted to my husband was still living at that point. And then, you know, of course, my husband dying by suicide, that has has nothing to do with hospice, you know, for the most part, but a loss is a loss and grief is grief and widowhood is widowhood. And, you know, what you experience in the aftermath, there’s so many similarities no matter what the loss or how someone died, so after my husband died, I worked at my previous job for about a year a little over a year before I made the jump, to go to hospice as a full time employee because I felt like in my first year of grief, it pretty probably wasn’t the smartest thing to do just for my own self care, I didn’t want to dive right into helping other people with death and dying and their grief and their losses when I really needed to take care of myself. But as more time went on, I thought, Okay, you know what, I’m still grieving, because I think you grieve forever. That’s, that’s, you know, my belief. I thought, well, I’m still grieving. But I know I really think that I’m healthy and well enough and healed enough that I could help other people. And I think my personal experience was really going to benefit what I could give to a job like that. So, I hopped back into hospice at that point. And I hadn’t had any miscarriages, I hadn’t had any baby losses. At that point, I wasn’t able to have children with my late husband. And that was always a personal struggle to where I really wanted to become a parent, but I couldn’t, and I couldn’t and years passed and I couldn’t and you know, all the trying anybody who’s been through this, you know, you know, you try and you try and years past, and it’s just it becomes so heavy. So then losing my husband, of course, was losing all that, too. So, if I really wanted to be a mom, now I have to find somebody who wants to also be a parent, and how am I ever going to find this perfect person, I have to start all over and you know, wasting more time. And that’s kind of the wheels in my head, were turning with that kind of a thing. But I am remarried, and I’ve been married for, it’ll be four years this summer. So about three and a half years right now that I’ve been married to my current husband, Jeff. And all of the losses that I’ve experienced with the babies were with him. So, we had a lot of struggles trying to become parents as well. And it was just loss after loss after loss with him. And those were really, really difficult in a completely different way. And as far as the hospice work, it was always really cool seems like the wrong word when I’m talking about loss like that. But it was always really cool to be working for a hospice agency, when I was going through those losses, because you can imagine, if you work in the field of death, and dying, and grief and loss, you’re going to be, I think, more compassionate to your colleagues that are going through something like that, even when it’s disenfranchised grief. And if I needed to, you know, obviously be off from work for a few days to recover, and, you know, go through a surgery and recover from that, I felt like everyone was very thoughtful and caring, and it was a really great place to be working when I had to go through something like that. And I know so many people don’t have that privilege. So that was always, you know, a blessing. I don’t think people were apt to talk about it with me so much, because it’s still like that hush hush kind of grief, even in the field of grief and loss, believe it or not, but I did feel a lot of compassion when I worked with with hospice during those time.
Victoria Volk 07:53
I can’t imagine the whispers it’s like, I heard she had a miscarriage. And you know, it’s like the people that feel so uncomfortable with what don’t know what to say, and don’t know how to behave around someone who has had a loss like that. And, you know, I just want for our listeners who may not be really as familiar with the term disenfranchised. It was actually coined by a professor in the 80s, when he had a student that talked about the death of her ex-husband, and how it wasn’t her loss wasn’t even really recognized. And even though they had been together for many, many years, and when in grief recovery, the label doesn’t help us. It doesn’t tell us how to move beyond loss. But I just wanted to explain the definition a little bit. So, when that happened with your first husband, what were some of the things that you experienced and went through in respect to feeling that it was disenfranchised? Like what can you elaborate more on that?
Arielle Arbrushites 09:01
Yeah, absolutely. And again, to your point, I guess I was lucky that I was actually truly married to him, so I was a recognized a widow by society versus if we had been in a partnership for a while or he was just my fiance, or you know, people just they like the society likes the labels, right? You know, it doesn’t help us grieve. But society recognizes that because this disenfranchised grief is grief that’s not recognized or acknowledged by society in the same way as other grief. So, um, you know, things that I experienced, by way of this disenfranchised grief terminology. I think, um, you know, my husband dying by suicide, it makes people uncomfortable, you know, and rightly so, because it is a trauma, you know, it was a traumatic experience for me, but, um, they, they rope you in to the story. So, the way I explain this is You know, people will say things like, you know, did you notice anything? Or what’s what’s the worst version of that question I always say is Didn’t you notice anything and, you know, like, that just kind of gets you. It kind of takes you into the story as though you were the bystander there. And you were you somehow have some responsibility to retell that story for people. People don’t tend to ask those questions when someone is dying of a medical event, a heart attack cancer, even, you know, if somebody is a soldier in the military, it we know, as society, it comes with that, you know, expectation that you might be on a dangerous assignment, you know, or war might be part of the equation, it doesn’t make the loss any easier for anyone who would lose a spouse or a person that way. And that’s not what I’m saying. It’s just that, you know, if you said, you know, my husband died in war, okay, you know, my husband died of cancer, or my husband had a heart attack, nobody asks you to that retail, how the heart attack went? Or what happened, or what was noticed, or what wasn’t noticed. And, you know, I think people sometimes they come from a place of like, morbid curiosity, where they actually want to know what happened with my husband. But for the most part, that’s not even why those questions are asked, people are just so caught up in that story that they pull the, you know, the breathed into it. And I think that was often really hard. And, you know, just the not talking about it, people will talk about folks who have had long battles with cancer, for example, and, you know, have have died in that way. Equally as awful, you know, there’s no hierarchy, again, with the grief, but people don’t necessarily want to talk about the fact that my husband took his own life and killed himself in our house. And I don’t necessarily always want to keep retelling that story over and over either, but it’s all very quiet, you know, not to mention his name, not to say, oh, you know, he was such a great person, or he was this or he was that or let me tell you a funny story. And, you know, that was that was kind of difficult too.
Victoria Volk 12:16
It’s a different honoring, in a way that the people who maybe not even you know, even if you don’t necessarily have a close relationship with someone, you can definitely find something that had some interaction, you can share something a memory, or an interaction or something with that person. But like you said, that’s a very good point you bring across is that maybe the griever just wants to hear something positive the impact that they had on you as a person while they were alive, right?
Arielle Arbrushites 12:50
Yeah, yeah, absolutely. And I mean, you know, I, I feel like when we’re talking about disenfranchised grief, I have to bring up the point that there are some people thankfully, nobody I was very close to, because I like to think I choose by my friends, well, but there are people out there who will say things, for example, like, Well, you know, he obviously went to hell, or, you know, God will never forgive him. It’s like, that’s that disenfranchised grief, right? Like, the way he quote unquote, chose to die was something that’s that some people will deem totally unacceptable. And then they’re not telling him that because he’s dead, they’re telling me, which then puts so much more sadness and heaviness and anger on me. And, you know, I think I think people who have lost anyone to suicide, it doesn’t matter if it was a spouse, you know, they probably have experienced some element of that.
Victoria Volk 13:46
That’s very isolating.
Arielle Arbrushites 13:48
Absolutely, and being a widow at 29, which is how old I was when it happened was isolating enough so to put that, on top of it was, was tough.
Victoria Volk 13:59
Which brings to mind things those unhelpful things that people can say, too, is like you’re only 29 there, you know, you have so much more opportunity to meet somebody. Did you hear things like that, too?
Arielle Arbrushites 14:11
Oh, my gosh, so my favorite story about this is I’m at Rick’s funeral I in the front of the funeral home, with the urn of ashes standing there and like the receiving line, you know, everyone comes through and gives you a hug or tells you, their story. And someone actually came up to me on the day of his funeral and said, you know, well, you’re still young, you’re cute, you’ll get married again, like he had been dead for three days. And I just thought that was absolutely horrific. Like the worst thing you could say as I’m standing there with tears streaming down my face grieving my husband, that someone could say that it seemed odd and I’ve always thought to myself, you know, even if people are thinking that and that makes them feel better, like she’ll be okay because you know, she’ll find someone again, if they need to think that there’s no need to say it out loud to me, especially that soon in the grieving process. So it makes me laugh. Now you can tell that I’m like chuckling over it. But you know, at the time, I was just kind of it, I was taken aback. And I, I didn’t really have a response that I can recall.
Victoria Volk 15:18
But all of these things that those comments like that they kind of stack up. And it’s like, and that’s why we isolate as Grievers because we’d rather just stay home then go out in public and hear these things, right?
Arielle Arbrushites 15:30
Absolutely, I couldn’t find really anybody at that point to understand exactly how I was feeling or close enough. I mean, I was 29, some of my friends were still, you know, planning their weddings and getting married. And I had had three weddings to go to my first year of widowhood, which was really, really hard as well. And, you know, no fault of anyone they were, they were celebrating a part of their life. And, you know, one, one part of my life had ended, but it was a, it was a very transitionary time. And it was, it was tough for me, because I felt like to find another 29-year-old widow, I would be hard pressed to find that person. And then even if I did to find someone who had been bereaved by suicide and had to grapple with the the trauma and the guilt, and the, you know, circumstances of that, that would be even more rare. And, you know, that was, that was really something.
Victoria Volk 16:24
So where did you find support?
Arielle Arbrushites 16:26
I think I found support, you know, through writing, because I’ve always turned to writing my entire life to help me process. And then my writing kind of became my outward grieving, it was like my morning. And what I did was I had a daily widow blog, where I would write every single night, and I would publish it every single night. And it really gained, you know, quite a readership. And so, this was back in 2014, I started the blog six days after Rick died, and I just one night decided, you know, I think I have something new to write about, and this will help me and if people read it, and it helps them really great, awesome, but it’s, I’m really gonna write it for me. And when I started out doing it, I was writing, not so much to help other people who had been bereaved, but to help everybody in my life and beyond know, what I might need at any given moment, or how to understand me, or how to see what I was going through. So, it was kind of my way of reaching out, like, you don’t even have to reach out to me, but if you read this blog nightly, you know, you’ll know where I’m at. Because I was all over the place for that whole first year plus, and I did write every single day, for over a year, Chronicle my whole grieving process in real time. And what ended up happening was my friends, my family, my acquaintances, my colleagues, everybody was reading this. And in turn, they knew how to support me, which was awesome, because I was asking for what I needed, or I was telling what I, what I needed. And it got bigger than that. And a lot of people that I didn’t even know were ended up reading it. And, you know, I think it’s still fairly widely read, because I do get messages from time to time, even though that blog has kind of stopped in time. And then I’ve started a new blog, where I’m not labeling myself as a widow so much anymore, but it’s, you know, it’s, it’s still there. And I think people find that they’re not as isolated because they have something to go to, and they see, okay, somebody went through something like this, and it’s there. And I know that I’m not I’m not crazy, I’m normal, because I can read these words. And, you know, that’s always been important to me,
Victoria Volk 18:38
You thought about turning that into a book?
Arielle Arbrushites 18:41
I have, I would really like to and it’s definitely, you know, the next thing on my list of things to publish it, um, it needs a little bit of editing because my, what I really dream of doing is kind of taking that blog, turning it into a book. But now you know, almost seven years later and later in retrospect, I can I have insight into all these little pieces and chapters that I can put in there now that wouldn’t have been there before. So I’d like to have you know, all the stuff from that first year, plus the me now giving her insights into things and I think that would be pretty cool. The good news is, you know, it’s basically all written, and it just needs to be tweaked and edited. So, it’s just a matter of getting it out there. But that’s, it’s actually one of my goals for 2021 to have it, have it be out there published.
Victoria Volk 19:36
I would love to support you in that I started my blog in 2014, my first blog to where I was blogging about personal development and growth spirituality when I felt like I was starting my personal growth journey, after loss and grief and all of that and ended up writing a book to self publishing it so I would love to see that come to fruition for you and went from We can definitely have side chats about that my future.
Arielle Arbrushites 20:03
It’s awesome. yeah, I mean, I applaud you for for your book as well. I mean, it’s just an awesome thing giving voice to this kind of grief, it’s so important, I can’t, I really can’t emphasize it enough. It’s not a self-serving thing. You know, and I’m sure you understand that too. You’re not you’re not publishing a book as this self-serving practice. And that’s not why I would choose to do either it’s just, you want to be a voice for these things.
Victoria Volk 20:26
Well, and it was very therapeutic. I mean, that was the one thing I didn’t expect from the experience was that it was very therapeutic.
Arielle Arbrushites 20:33
Absolutely.
Victoria Volk 20:34
So, I want to give you the opportunity, though, to share about Rick in a way that you maybe didn’t get the opportunity to to others during that time, and maybe in your blog, I’m sure you expressed it through your blog, but tell us about Rick.
Arielle Arbrushites 20:49
Rick was a complicated individual, for sure. As you can imagine, for somebody who did take his own life, but he loved the beach he loved to he he loved to look up at the sun and you know, you could find him on a 55 degree day laying out on a towel in the backyard just to catch the rays of the sun even though it would seem to me too cold to be laying in the sun. It was something that he would do and you know that I think about him the most when I see the ocean or the sea and the sun shining on it because I think that’s where he felt most at peace when he was so conflicted and you know, in emotional pain, I guess I would is how I would say it and you know, I really I believe in being real about people you know, so there are a lot of things that I can say that are really wonderful about him and that would be perfectly truthful but you know, I don’t want to talk him up either because you know, he obviously did have some struggles. And you know, I think it’s important for people to know you know, we can still grieve someone who was complicated and complicated grief is the thing to write so, um, you know, but but Rick was very thoughtful, he was a very thoughtful person, he would write me notes all the time I have stacks piles of handwritten notes from him still, it was a kind of a regular thing where I would come home from when I was I was married when I was in grad school, I’m getting my master’s in social work and I was working full time so I would go to school at night from like 630 to 930 I’d be getting home around 10pm and oftentimes he would be asleep already and he would leave me a note on the kitchen table or note on the counter and you know, that was kind of a regular thing and they were very sweet and sometimes they’re very funny. And most of the time he was funny without meaning to be funny. So um, that was very cute. I know that in his mind, he felt like he was doing me a favor by committing suicide because he wanted me to have a better life than what he thought that he could give me and he felt like he was giving me a gift which is just to me so sad and I know this because of a suicide note that he left for me not because I’m you know, creating some kind of story around it but based on what he wrote to me I know that that’s how he felt and I find that very heavy and sad but he also was thanking me in the note so I always like to think that you know, maybe the last emotions he was feeling before he died were of gratitude instead of despair and that’s kind of the story I tell myself so that it doesn’t become too traumatic and too heavy.
Victoria Volk 23:50
for a lot of conflicting feelings in that yeah, here that’s a lot of grief that’s what grief is it’s conflicting feelings.
Arielle Arbrushites 23:58
Yeah.
Victoria Volk 23:59
Thank you for sharing.
Arielle Arbrushites 24:00
Sure.
Victoria Volk 24:01
Moving on to losses you’ve experienced well, and you fall in love again.
Arielle Arbrushites 24:08
I did you did. I was not ready people always say How did you feel that you were finally ready? I was not ready. I did not say let’s go out and date again. No, Jeff just happened as most things in life do just like everything else that’s ever happened to me. He just happened and we became friends and then we became more than friends and now we are married, and you know, we have a beautiful family together. But um, it takes the right person to I think marry someone who has been widowed, especially someone who’s been widowed by suicide. And he happened to be that person and I am so so lucky to have found him early enough in life that I get to have a lot of years with him hopefully.
Victoria Volk 24:49
Beautiful. So, what is one thing that you would share with others who may have experienced a similar loss as you are maybe not either with Rick or the miscarriages?
Arielle Arbrushites 25:02
I think you know it’s important to find your army of support and you know I have to say that as a social worker and especially in the profession I mean you know, support is huge support doesn’t have to look like you know 400 people reading a blog every night it can be just your best friend just your mom or your dad you know, it could be your neighbor that you have a cup of tea with you know it, it can really be anybody that makes you feel a little bit lighter, a little bit less alone and you know, By the same token even though grief can feel so isolating and sometimes be so isolating you’re not alone. I felt alone so much of the time but but really I wasn’t you know, there’s so many other people that sadly have experienced a loss like mine and I feel that way especially when we talk about like the multiple miscarriages you know, it’s it’s not talked about it’s it’s we’re getting better at that I think but it’s not talked about to the level it should be in could be but it’s it’s so prevalent and nobody says anything and if you’re feeling some kind of way, somebody else out there hundreds of other somebodies 1000s of other somebodies are feeling that exact same way so it’s either just a matter of knowing that to make yourself feel supported or finding those people to make yourself feel supported and you know, thankfully we live in the age of technology where you can google things and you can find Facebook groups and Instagram groups and blogs and there’s just so many ways to do things virtually if you are isolated physically that you’re not able to go find things and of course you know we’re in a pandemic so we’re not doing these large group gatherings and clubs and things anyway but there’s so much out there there’s there’s tons of things out there.
Victoria Volk 26:57
Like this podcast.
Arielle Arbrushites 26:58
Exactly like this podcast perfect example.
Victoria Volk 27:03
Would you like to share about the losses of those babies?
Arielle Arbrushites 27:09
I’m sure sure. Um, I I felt a strong connection with all of them. And I think it was shocking to me how little support was given to me by the health system every time I had a loss and you know, that’s one of the things that professionally I’m trying to work on quite a bit in the field of grief and loss and I had some perinatal death and grief training recently so that I can try to help folks in the situation that I was in no matter what gestation and you know, there’s really again there’s no hierarchy with this grief but it was just so hard for people to know what to say or do in the health system in my own life. And you know, my husband Jeff was very very supportive and I used to write little notes to myself because I always go to writing and I used to write little notes to myself during those different losses just saying you know, whenever Jeff is annoying or you’re frustrated with him just remember this moment and how amazing he has been today doing this and this and this and this and I would lift every way that he was able to support me through those because especially when we got to the you know, the third miscarriage um, I was a mess. I mean, it was just so so traumatic. And it was just this roller coaster of happiness and devastation over and over again because unfortunately for us with the last two losses, you know, we had gone in and we had ultrasounds, everything was fine and perfect and healthy. We saw the heartbeat we started the baby moving. And, you know, so you kind of you breathe a sigh of relief, thinking Everything is fine, and then for weeks to pass and then to go in and for them to say that the baby had died, you know, shocking, awful. And then the third time around, you know, you think okay, well it’s, it’s finally it’s finally my tie, like it’s really going to happen this time. You know, this could not possibly happen again, and you hold your breath and you’re just so traumatized and you go in and you go to ultrasound after ultrasound, and they’re all fine, everything’s great, everybody gives you the thumbs up and you just keep breathing a little bit more a little bit more and then to go back and have them tell you you know, the heartbeat slowing down and we think the baby is going to die for the for the the last baby loss that I had. I actually left the doctor’s office knowing that the baby was still alive but going to die and I had to go home and essentially wait for the baby to die which it was totally different from my first miscarriage. Was miscarrying at home very painfully, and very different from my second miscarriage, which was finding out that the heartbeat had stopped, and the baby had already died, and then getting a DNC surgery to remove the baby that had died. So, this third time, it was like, Okay, well, it’s going to die. But we can’t do a surgery yet because it’s still alive. And there’s really nothing we can do. So go home and wait for it to die. So that was gut wrenching. And I think Jeff, and I just didn’t really know what to do or how to react and like, you know, what do you do? Do you go to work and just, like, know that the baby’s in there dying, and you can’t do anything as its mother. And it was, so all my losses were so incredibly different to, which is why I feel like, I can relate to different miscarriage stories, because, you know, they weren’t all the same. So, somebody had the first kind of loss that I had, I get that they had the second kind of loss, I get that the third kind, I get that, um, you know, did they all make me stronger, probably more resilient. Absolutely. But it was a really, really hard time for me and for us, and I really began to think that I was just not going to be a parent. Um, and I, I pretty much did not want to try to become a parent anymore, because the thought of having a fourth loss was almost worse than anything. Um, but like I said, at the beginning of this, you know, I do have a son, he’s 16 months old, and he is amazing. Um, but I was terrified for my entire pregnancy, that something was going to go horribly wrong, as you can understand, and I know, many moms have been in that in that place, too. So, you know, there. There, there is a story unfolding. And you know, we always only see the moment that we’re in, like the page that we’re on, and I was really stuck there on those particular pages of grief for a long time, not really understanding that, you know, the pages would continue to flip. And at some point, I’d be feeling differently, even if it meant that I didn’t have a beautiful son out of it. Because you know, what, let’s face it, you know, that won’t happen for everybody. And that’s really, really tough, too.
Victoria Volk 32:15
If I could hug you. I would give you a hug right now, I just got teary eyed because I can’t imagine what that felt like for you just can’t. So, my mom, my heart goes out to you. I had a conversation too, with another griever about miscarriage early on in my podcast, and she was talking about, you know, you go into the doctor’s office and see all these women with the big bellies and, you know, join on their faces, and it’s like you’re in the same waiting room, and how tortures that must feel your heart and something needs to be done about that.
Arielle Arbrushites 32:55
Absolutely. Oh, that was a bit it was very difficult. I almost think though what was worse was leaving not once, but twice for two of my miscarriages, leaving that room where I had had an ultrasound knowing my baby was either dead or for the other time that you know, was going to die and you leave and they say like, okay, your copay will be $30, like, nobody’s been briefed to that I just had a horrible, devastating conversation, they are making me essentially pay for the bad news that I just received, like, there was just no sense of decorum. And that’s always been, you know, a sticking point, there’s somewhere in a folder in my home office where I have all these notes of what I would like to do to educate people in those professions just because I have this unique background of the grief and loss piece. And, and it’s just it’s not in fertility clinics, and it’s not in, you know, ob gyn offices, to the level that it should be. And I’m sure there are practices that are really building that and boosting that up and are really great at it. The ones that I was part of, we’re not really great at it. And I think it was just a deficit, you know, nobody meant any harm, you know, certainly, but they just hadn’t been ever given education or training or anything like that. And not once was I ever given even a flyer for a support group or anything, even loss after loss after loss. So, I still find that incredibly shocking. It’s incredibly sad. It really is. And I’ve often said to Jeff, that I am the kind of person especially because of my profession where I know how to find resources and I know how to get what I need, if someone’s not giving it to me, and I could do that and I could take it upon myself. But there are so many other women out there who are not able to do that who are not going to do that who are not going to know to do that. And what a disservice we’re doing to those people. So well.
Victoria Volk 35:02
and because grief is cumulative, and as cumulatively negative, it’s very likely, highly likely that someone coming into that situation and having to leave knowing that their baby will die or has already passed. They’ve had grief before that. And so, it’s just more grief on to their lives. And it’s almost like, what can’t they just, like, create this separate unit of the facility that’s specially for holding the hearts of people, mothers, you know, like the families because it’s your husband to like, he, like how did he navigate that, too.
Arielle Arbrushites 35:52
We just we navigated it together as a team for each other, because you didn’t have anybody, you know, to talk to to support him, you know, they don’t support the dads, it just it’s not a thing. And, you know, to your point about, you know, can’t we have a separate unit or waiting room or area or something, you know, I work in healthcare, if that’s not possible, because I know, that’s not always possible. That’s a beautiful dream. And it involves, you know, money and space and all sorts of things. If that’s not possible, at least you let the people who’ve just received bad news said, sit in that room, as long as they need take the time that you need, I’m here for you when you’re ready to go. And then you assign someone to walk them out, you know, whether it’s an arm around them, or you walk them down a different hallway, so they can leave outside of a different door, you don’t have them just check out like everybody else, where everybody’s waiting with their big belly and they get charged a copay by a chipper, cheerful person, and they’re out in the elevator before they know it with no support, you know, there, there are ways to do it, I think, you know, there’s an ideal way, like what you were saying that would be the ideal, but they’re all there’s always ways to think outside of the box. And I think people are either just unwilling to go there, or they have not experienced a loss like that. So they don’t even know that that would feel good or different, or would be important. And I think that’s just where the education and training comes in.
Victoria Volk 37:15
I also seem to believe this is my own belief is that because it’s so common, like miscarriages become so common. That it’s just like, we’ve become desensitized to it. And, you know, when you work in that environment, I imagine, you’re like, probably number 13 that came in that day. And I’m wondering, too, like, who’s supporting the health care workers who are in those positions? And it’s like, almost like, are they just separating themselves? Are they disassociating from the situation? Because if they didn’t, to bring that home with them, and it kind of speaks to the work that you do in hospice, like, how do you separate yourself from that, so you don’t bring it home with you. So, I think, along with education, it’s also to recognizing that there is a problem. But then when you recognize there’s a problem, you have to do something about it.
Arielle Arbrushites 38:19
You’re so right, you’re so right, um, you know, who is supporting those health care workers? And how desensitized are they? And, you know, what do they know and not know about what that feels like? Or, you know, perhaps they’ve experienced their own losses, and then you’re faced with that every day. So they have to compartmentalize they can’t even go there, you know, and, you know, we can assume and, you know, we’ll never completely know everybody’s individual stories, but yeah, I mean, absolutely, there has to be a way to support the people in those professions and positions and your your right to I we tried to do that in, in hospice, because, you know, I have, I’ve sat with many people who have died, I’ve watched people die many, many, many times, there have been weeks where I’ve had multiple patients die. And, you know, it’s, it’s to be expected because I work in hospice and, you know, that’s, we know that’s what’s going to happen. And oftentimes, it’s really very beautiful and positive and as an experience, you know, much like birth it there, there can be a celebration for death, you know, it’s not always that way. But, you know, I really like to de stigmatize the death and dying stuff to because it’s not always this this awful, terrible experience, but um, it can be really heavy, it can be really tough. And certainly, you know, I come home and I think about patients that I’ve had, who have died, you know, and I still do you know, if I have had patients that have died five years ago, I still think about them from time to time and, you know, that’s part of the work to it, it touches you It teaches you things and I’ve learned so much from the people that I’ve met and from their family members. I think you know, it’s gonna sound kind of trite. But self care is really important. And I don’t mean like, you know, so you go home and you take a hot bath and you light the candles, you know, that’s not exactly what I mean. But you kind of have to know when you’re you like reached your, your point of being a little bit too filled with grief to know, okay, maybe I need a day off today. Or maybe I just need to take a weekend to go for a hike to clear my mind or, you know, whatever it is that would really speak to you and be helpful to you, I think we have to be good about tuning into that. And healthcare is the kind of profession where we tend to just go go go, and it’s about the patient and not about us. And it’s about the people that we’re serving and not about us. Because you know, that’s why we are called to those professions, but you’re not any good to anybody else. If you’re not taking care of yourself first, it’s like the whole oxygen mask analogy, you know, you got to put it on yourself, and then you take care of everybody else that you’re supposed to take care of, it’s a lot like being a parent, you know, got to take care of yourself first, to be a good parent, to your child or your children. I feel that way about my patients to feel that way about my team of employees. And, you know, we, we try to encourage things that will fill our cup, so that we have things to give to other people. And whether that’s resilience training, or retreats from time to time, or just, we do like a morning inspiration on our morning conference call every morning in hospice. And sometimes it’s a joke, and it’s funny, and sometimes it’s more inspiring, and reflective. And we try to do things here and there. It’s hard because, you know, again, we’re in a pandemic, and healthcare. very tricky right now and even heavier than usual, especially especially at hospice. But we try and I think the effort speaks volumes to people see that you’re trying to care for them and make sure that they have what they need. So, I think that’s important, too, that the effort.
Victoria Volk 42:02
wonderful points, I mean, this this podcast episode very much be for healthcare community, too.
Arielle Arbrushites 42:08
I’m very worried you have to tell me like, Okay, you’ve, you’ve said enough?
Victoria Volk 42:12
Oh, no, it’s all good. It’s all good. So, what has your grief taught you?
Arielle Arbrushites 42:17
So much, um, I, it’s really been a journey to learn myself, if I’m being honest, um, you know, I will never be the same. Because of Rick dying, I will also never be the same because of all the miscarriages that I’ve had. But they’ve shaped me, and they’ve molded me in ways that are allowing me to be the best version of myself, and I think, offer bits and pieces of that better self to others. And you know, I’m still a work in progress, you know, I would hope that I’m not the best that I can ever be. I want to keep improving until the day that I die. But I’ve just learned so much about myself as a person and what I really need and what I really want and about fear. When I lost Rick, I was very, very afraid. I was afraid of so many things, what life would hold I was afraid of the unknown. I was afraid of moving, I was afraid of staying, I was afraid of not finding somebody again. You know, as afraid of people not understanding I was afraid of financial burden. I mean, I could write you a list of 150 things. And I was afraid of so many other things that had nothing to do with the loss of Rick. But I think it made me so much braver because I thought, well, if the worst thing that could ever happen to me has happened to me, nothing could possibly be as bad as that day. So just live every day. Like it’s the best day that you’re going to have and do whatever it is you want to do. And you know, tell that person exactly what you want to say don’t keep it inside and you know, share this moment with this person because you’re you have that fleeting thought Don’t let it be just a passing thought go ahead and do it and kind of like actions speak louder than words. So, I just started doing all the things that scared me. And that was a very eye-opening experience. And I think it was very positive and it kind of added to my resiliency and I don’t know, you’re probably familiar with like the post traumatic growth. So, I feel like you know, I, I could be a poster child for that too. You have so many bad things happen to you, but I have a really a very happy person. And I think that that makes that weirds people out sometimes but um, it’s because I have learned so much about myself and I’ve tapped into so much resilience over the course of time that it has just served me so well in so many beautiful ways that can’t possibly be ignored. So, it’s really less of like a happy, cheerful, Sunny overly positive personality and more of like, I’ve learned from this, and now I can use it. And it’s made life so much better. And kind of like the, I guess it’s a famous quote, like, you know, shared joy is double joy and shared sorrow is half sorrow. So, you know, that’s, that’s kind of how I think of things, you know, that’s why I write so that I could double the joy and I can have the sorrow too.
Victoria Volk 45:30
I love that. So, I can relate to the post traumatic growth. And I can also relate to, well, let me get your take on this. Because when you’ve experience when you feel like you’ve lived three lifetimes, and you look back on your life, and you’ve recognized where, where you’ve grown, and how far you’ve come and things like that, I have found it really challenging to look at others and see them suffer. And knowing that they don’t have to, like, there, there is more to life than what you’re feeling right now in this moment. But it’s such a challenge for people to get out of that headspace. And, you know, we have to be in it for a time, it’s whatever time that is. But do you agree or disagree? Or what are what is your thoughts on this? Maybe like this idea of, in addicted to the suffering itself?
Arielle Arbrushites 46:35
you’re talking about other people, not you and I right? When you say that, right?
Victoria Volk 46:39
Right, because, you know, like, when you when you’ve come so far, it’s like you, you just want to pull everybody with you, you know, it’s like, Just come with me, just let’s come, you know, not so bad over it’s this, this is amazing over here. And yeah, it doesn’t feel good in the process. But no one ever said I had a post the other day. Healing feels amazing said no one ever. You know, the process sucks, it does. But it’s like getting on the other side of that.
Arielle Arbrushites 47:15
You have to feel everything to feel the good and the joy. And I think that is very hard for some people harder than for you and me. And, you know, we have most likely either been given the tools by others, or we have built and created our own tools and kind of adapted, whether it’s because of privilege, or whether it’s because, you know, we’ve had experiences earlier in life than some other people and that has taught us how to build resilience and, you know, use history as a as an educator. You know, not everybody is as lucky as we are where they feel that they have those tools and that strength and those experiences to build from. So that’s why my thinking is, you know, for you and for me, we have a greater responsibility then to do things like this podcast and be that voice so that we can share the narrative. And we can give guidance, really, I mean, I think really, that’s what this is, it’s your giving voice, but you’re also guiding other people, it can be different, it doesn’t have to be the way it is right now. And like I said earlier, I think we grieve forever, but our grief changes, you know, it morphs, and it changes, and you don’t get over grief, it will always be part of you. But certainly, you can heal and you know, certainly you can be joyful again. And everything can exist in the same space. So, you can feel pain, but you can also feel joy. It’s not one or the other. It isn’t black and white. And that’s something that I talk to people about all the time because there’s so much all or nothing black and white thinking out there. Just because it’s like in our culture, that’s just the way people are taught and they just they grow to believe it’s like well if I feel sad, then I’m just gonna feel sad Well, you can feel sad and you should feel sad because things sad things have happened to you and you have every right to feel sad, but you can also feel joy at the same time. And you know, you can feel other things to anger and comfort and contentment and worry and confusion, you know that everything can all exist in the same space, and we learn to navigate it. So, you know, those are my thoughts. We, you know, you and me we have we have a greater responsibility because we have learned things and we have found things that that work and help. And that’s why we’re doing what we do. That’s why you do what you do. And that’s why I do what I do. And it takes all kinds of people to make this beautiful world work. There are many jobs I would never want to do. Just like people would never want to do my job and they tell me all the time. But there are lots of things they do that I wouldn’t want to do either and that’s why it takes All kinds of people to make the world work, which is great.
Victoria Volk 50:03
Yes. 100% I agree. I just had a post come to me yesterday Actually, I haven’t written about this yet. But someone had reached out to me and asked me to questions along these lines. And, you know, like, someone doesn’t identify themselves as a griever. But I can see that it’s grief and notes past relationship that they haven’t, they’re not recognizing, like, I’m over that, like, I dealt with that. I don’t need to dig that up, right. And my, what came to my mind was that, if you can talk about it today, like you and I, like you talked about your experience, and you’re not laying on the floor, a pile of mess, right. And I can talk about my experiences, and I’m not on the floor, like a pile of mess, that’s when you know, you’ve done a lot of work when you can talk about it. Hear Your experience, when you can help others through story. And, and not like a ruminating in the story. But in a this is what helped me this is what’s possible. I don’t know about you, but for me, I found my potential when I shed all of that when I shed all the stories when I shed the anger when I shed all the resentment, the grief that had kept weighing on me the grief has not gone away I still grieve my father certain relationships that change because of that experience and the trauma that happened to me after those things still happen and that doesn’t change that experience but I can talk about it and it not take me back to that little girl that is scared and fearful and you know all those emotions that you talked about.
Arielle Arbrushites 51:52
You’re absolutely right and you know for we can also be those people that are okay now and thriving and and share that with others, but also say, no, we were on the floor a pile of mess, at one point, and now we’re not and you know, that’s possible for other people too, because we can be we can keep it real. We used to be a mess. And now we’re okay.
Victoria Volk 52:14
Oh, I was a train wreck. I was a train wreck. Yeah. And you know, I could laugh about it. My life was a mess. I was, you know, used alcohol and got myself in some really scary situations.
Arielle Arbrushites 52:29
And look at you now.
Victoria Volk 52:31
Greed was the root of it. And that’s where people don’t connect the dots of what is happening in their lives, these repetitive behaviors, these things that we’re seeking to feel better, don’t connect it to the grief in their lives. And I want to ask you something, because I have a sneaking suspicion, though, that that loss of Rick wasn’t your first grieving experience?
Arielle Arbrushites 52:55
No, it was not my first grieving experience. No, I lost my great aunt when I was a teenager. And she was much closer than a grandmother to me. She was my best friend, truly. We used to sleep over together, and she was very, very special to me. So, when I was 16, she died. I experienced that loss. And I had experienced the loss of both of my grandfather’s two. So, in I would say early adulthood, my very early 20s. So, I am lucky to have a 92 year old grandmother and an 85 year old grandmother still living but I had lost both of my grandfather’s as well. So, it was not my first rodeo with grief. But it was a very different grief and a very traumatic grief when when Rick died.
Victoria Volk 53:41
And that’s why I say grief is cumulative. And it’s cumulatively negative it stacks up, right? Yeah. Well, you kind of talked about ways that others supported you and how writing kind of became your way to express what you needed and how you want it to be supported. What would you suggest to people who aren’t writers? Need? Yeah, what? Oh, my God, I need to, like spit it out Victoria. So writing was a huge outlet for you and expressing on what you needed and how you needed to be supported. And it was for me too, but I don’t know if anybody read it, but I wasn’t very good about vocalizing either. And so I journaled I internalized a lot which was not healthy. It was good for me, but it wasn’t a healthy way to approach I was an isolated grater I that’s I mean I was in a pit me of an isolated graver I don’t need your help. I can do this, you know, because, and here’s the thing, it kind of ties back to when you said resiliency. You know, when you lose a parent, as a child, you don’t choose resiliency, you have to get resilient. So, I hate when people say that children are resilient and bounce back, eat that. Don’t say that people. Please don’t say that. If a child If you recognize a child as resilient, it’s not because they chose to even have a choice. Yeah. Anyway, I digress. What would you suggest to someone who isn’t a writer to how to communicate what they need and how to be supported?
Arielle Arbrushites 55:16
Maybe the easiest thing to do would be to take the pressure off and not think about grief and think about how to explain their huge grief to someone because that is you know, that’s a tall order trying to put that into words for yourself, let alone to other people to tell them what you need. Instead, I would encourage someone to think about what brings them comfort, you know, is it a special warm coffee drink? Is it watching funny movies with a person that you really care about and can laugh with because you feel safe with them? And you know, is it going for a walk in nature whatever the case might be, you know, but think about the things that will really make you feel comfort like is there a special comfort food like do you just love when you feel like crap you want to eat you know homemade macaroni and cheese you know, whatever it is for these these folks? Think about those things take the grief out of it just like what would make you feel better be really literal and then tell those people that that would be something that would be awesome like you know, could you make that mac and cheese that I love so much that we had last year at this picnic and like ask them for that? Or say you know I I’m feeling kind of low today I really want to watch friends on a marathon of friends you know Do you want to come over and hang out with me for a little while now it puts it on them to ask rather than someone offering it to them but you know to answer your questions that’s what I would suggest because that’s not really making them talk about the grief Enos it’s just you know, having them tap into like what do I need what’s going to make me feel better like it won’t cancel my grief out but it’s going to make me feel loved and warm and comforted and some people can give it to themselves like you know, I tend to do that and especially like in the pandemic you know, we’re very handicapped with what we can do but you know, I’ll think about you know, I just really need a cup of coffee and to sit with a blanket over me for 20 minutes by myself and I’ll feel better and rejuvenated like I can do that I don’t need to call a friend to give me that and some people you know, some people might and that’s perfectly fine but there are lots of things you can give to yourself too so I think recognizing what’s going to make you feel better and sometimes I tell people you know if they do journal or they don’t journal it doesn’t matter but maybe just get out a piece of paper and write down all the things that really make you feel good and comforted and happy and like really really small like the cup of coffee like the warm blanket like your mom’s macaroni and cheese whatever um for very random examples here but I think you know that’s that’s what I would encourage people to do, I think it works.
Victoria Volk 57:54
Radical self-love. My newsletter my newsletter, as right now we’re recording it’s February and this probably won’t go live until like may April I’m not sure exactly when but at this time I my monthly series for my newsletter is self love as well it’s February you know, Valentine’s love whatever, the greatest love we can give is to ourselves. so kindly percent highlighting that yeah, it’s like, we don’t necessarily need to get anything from anybody. And really, honestly, that was a message that took me well into my 30s to understand late like probably in the last five years to be honest, like I can give to myself I don’t need to get from other people, and I should give to myself first. I should Fill my cup first I should understand what I need first. Because that’s been an integrity it’s living in integrity with yourselves, and I think we sabotage and and minimize the importance of that in grief and when we tend to be people pleasers or we have no boundaries I mean there’s grief brings up everything that you need to heal within yourself.
Arielle Arbrushites 59:15
That’s what I was saying before lead by example you know, like you know, you’ve learned all these things with the self love and everything else like so there you go, you’re leading by example and I can lead by example if this is what we can do to make ourselves feel better and we’re teaching other people It seems very simple, but you know, we’re, we’re teaching other people we’re really doing it.
Victoria Volk 59:36
And on that note, is there anything else you would like to share?
Arielle Arbrushites 59:40
I don’t know the you know, I always joke with people that I am a an overshare You know, I’m not just to share I’m an oversharer and one of my physician friends once said to me, You know, there’s no such such thing as being an overshare as long as you are only sharing your own stories, you know, if you’re not sharing things about other people There’s really no such thing as over sharing. It’s just sharing. And I always think of that, um, but I’m an overshare. So, there will always be things that I have left to share. But today, I think we had an awesome conversation. And I feel like we shoved a lot into one hour, which was pretty cool. You can tell we’re both writers, like, I get the vibe, you know? So, But no, it’s it’s been a pleasure. I’m just very grateful that you know, you had invited me to be on the podcast, I think you’re doing amazing work. And I’m just so happy to be part of it.
Victoria Volk 1:00:35
Thank you, thank you so much for being here. And there is one final question. I didn’t ask directly that I like to end every podcast episode with sometimes I forget. But so, what brings you the most joy these days?
Arielle Arbrushites 1:00:50
I have to say, you know, besides the, the examples of my family, you know, my husband, my son, my beautiful bonus daughters, Jeff’s two daughters, my animals. Besides those things, it’s really still writing, it’s still writing with the intent to help other people. Because I feel like that is what gives me purpose. And having a purpose is very, very important to me. So, you know, my family, of course, gives me purpose, but writing to share to help to guide is so so very meaningful to me. So that gives me so much joy. You know, something as simple as being on Instagram and sharing different things with people that brings me joy. Blogging still brings me joy. Being on the podcast today, you know, brings me joy, writing books brings me joy. It’s kind of like breathing to me. It’s it’s self soothing. And it helps me connect with other people. You know, I’m a social worker. So, I like to connect with other people. And human connection is very important to me, and writing is how I do that first and foremost.
Victoria Volk 1:01:57
That’s beautiful, I can relate to much of that, I’m sure. Well, thank you so so much for being here. This was a jam-packed conversation. I absolutely loved it. So, thank you.
Arielle Arbrushites 1:02:12
Thank you.
Victoria Volk 1:02:13
All right. When you unleash your heart, you unleash your life. Much love.
Death/Dying, Grief Stories, Grieving Voices Guest, Grieving Voices Podcast, Pespective |
Darren Evans | Loss and Legacy
SHOW NOTES SUMMARY:
In this episode, Darren shares how loss (and his son) inspired him to create a way to capture life’s most precious moments, support others through caregiving and loving gestures, and leave a legacy for future generations.
After Cloud is, as Darren calls it, a life-tech app; for sharing what needs to be said, capturing what you never want to forget, and connecting with loved ones in a way that is both easy and joy-filled.
Through his losses, which include his older brother as a kid, and his father to cancer, and his mother-in-law to Lewy body dementia, Darren also shares what he’s learned along the way about what’s important to him and what he values. AfterCloud is both a mission of service and one of life preservation. Because we never know when it’s our last day.
RESOURCES:
CONNECT WITH DARREN:
Victoria Volk 00:01
Thank you, thank you for tuning in to an episode of grieving voices. Today, my guest is Darren Evans. He is the CEO and founder of after cloud, which is a digital media app, vault, or app, I suppose, how you describe it, where people can use to celebrate occasions record family history. And his work comes from a deeply rooted loss in his life. And we’ll get more into that. But welcome, Darren, thank you for being here.
Darren Evans 00:36
It’s an absolute pleasure, Victoria, good to be here. Thank you.
Victoria Volk 00:40
So, let’s start there. Tell us about the work that you do.
Darren Evans 00:47
Um, so, I mean, aren’t my work is fairly recent, it’s sort of a timely question about after cloud, it’s a bit of both. It’s an app currently, with a view to being a platform. And what it does is it helps people to capture their moments in multiple content types to create that moment. Right now, actually, it’s being used in dementia related services, in hospice care, older people services as well, and predominantly around activity types. So as an example, if you’ve got an art therapist, or a music therapist, or a therapist providing services, it allows them to capture those moments so that the individual can share those moments with family in a closed group setting. So that’s ultimately what it does. It also has the ability to future post. So potentially posthumous postings. So that’s essentially what after cloud is, but but the journey first started really, when my mother-in-law passed away two years ago. We’re actually working on another app at the time, which was essentially a digital advent calendar. So, my job was my wife’s idea I can’t take credit or responsibility for it was my wife’s idea that she wanted to do something for her sister’s 50th birthday, I think it was at the time. So, when we looked around, there was nothing really much available. So, we started to develop this app. But at the same time, we were counting from my mother-in-law, who had this very aggressive form of Lewy body dementia. And she, she, she died from it, it was very, as I say, very aggressive. And my son, who was 11, at the time said to us, can’t we do something for families or for people that are in a similar predicament? I think what it was is, when she died, we realize that most we had a, you know, lifetime of wonderful memories. There was nothing really tangible or anywhere to go together those things, you know that we’ve got your couple of pictures, and we’ve got, we’ve actually found once one video sense of her dancing in this sort of birthday celebration, I think it was. But that’s it. So, nothing really much. And we thought, you know, we, we don’t really do this in in family circles. I mean, there’s social media, of course, which is public. And there are ways and means to capture different things. But we, when my son said this, the light bulb went and, you know, as I say, I’ve been working in health and social care for 20 years. And I reached out to people. And once there’s lots of clinical systems in place, there wasn’t really anything for the individual. And that was really where we were looking at initially, that end of life space really.
Victoria Volk 03:53
As you were talking, I was reflecting on to thinking back to I don’t know if you’ve seen it at all, but and I’ve referenced it a couple times and blog posts and things, but have you seen or heard of the Netflix docu series surviving death?
Darren Evans 04:09
I haven’t. We have we we have a similar model. I don’t know if it’s similar at all. But Ricky Gervais has a Netflix serie, After Life. Oh, and it’s an I’ve only seen any sort of become aware of it, I guess in the last six or 12 months, but certainly someone pointed out to me that, oh my gosh, your app looks similar to to Ricky Gervais’s afterlife. And when you watch the series, you’ll see his wife has created these videos for him for when she’s gone. You know, don’t forget to do the washing on this degree and don’t forget that you’ll need to redo the insurance or renew the insurance on this date and little things that will help him assist Obviously from his Greek perspective, he is constantly looking at these videos. Just to sort of stay in touch, I guess, with his with his wife. But I’ve not seen the other one that you mentioned, no.
Victoria Volk 05:12
Yeah, it’s only six episodes. But every episode is a different aspect of end of life. So, there’s a couple episodes on talking about mediums. There’s one on reincarnation, there’s one specifically on end of life like seeing, like, the visions and things that people see towards the end of life. And I know we talked briefly before but going into end-of-life doula training coming up soon, I can see where this would be such a value piece that I can mention and give as a resource for loved ones, too. Because is this correct? It’s, it’s almost like, like, it can be like a family group, sort of thing to.
Darren Evans 06:03
Yeah, sort of, I mean, that’s that that’s certainly where we’re going right now, the individual can invite people into their circle. So that closed group setting, so it’s secure. But it’s an invite only. So as an individual, download the app, and then you invite your relatives into your circle. And you can do you know, that works both ways, of course. But what we’ve also built into the app is the ability for a companion. So, there are essentially three, use the types of currently anyway, three use type. So, you’ve got the individual patient, the loved one, a family member, and then a companion. And that companion effectively is a doula or some or end of life practitioner that can assist with, you know, helping someone with their content if they’ve not got the ability to do it themselves. And interestingly, I was I was last March, I was invited on to one of the basic doula foundation courses here in the UK. So, So I’ve kind of been through that process myself, and it was all new to me, I have to say I was very emotional, as well, to you know, just to learn to go through those processes. I was very fortunate to be invited by Felicity Warner, who runs absolved midwives here in the UK. And it’s fascinating. I’ve never actually heard the term doula before in my life. So it wasn’t, it was new to me.
Victoria Volk 07:27
I actually hadn’t either.
Darren Evans 07:29
No. Its interesting, isn’t it?
Victoria Volk 07:30
Yeah, I saw the term death doula. And I’m like, oh, what’s a death doula?
Darren Evans 07:35
It does sound harsh, doesn’t it? It’s even to me now I find it harsh, which is why I say end of life practitioner because it’s got that gentle kind of tongue tone to it. But yeah, death doula. So, it was new to me, as I say they call them soul midwives, soul companions and other things here in UK. But yeah, yeah. Completely enlightened by actually.
Victoria Volk 07:58
Can we bring up a little bit about because you touched on it before we started recording, but I’m interested in like, the cultural differences, because you’re in the UK. And you kind of touched on a little bit about how, you know the culture, there is a little bit stiff upper lip when it comes to feelings and emotions. And I can tell you in in German country, it’s no different. No, I’m in the German heritage background area. And it’s no different. But I’m curious how that has played out in your grief.
Darren Evans 08:36
Yeah, just a quick question, then then consider checking off
Victoria Volk 08:40
just a little bit. A little bit, or should I say Ich liebe dich, I love you.
Darren Evans 08:44
Yes, I mean, I lived I lived in Germany for a little bit, which is why I asked the question. There. Yeah. Yeah. So, I guess to answer your question, yeah, I find it you know, I’ve been having these, these conversations now across the globe, really, in relation to off the cloud, with end-of-life practitioners, clinicians, lots of different people that are involved in end of life care or, or dementia care or, or palliative care in the community. And culturally, I find it a little bit more advanced in Australia, and the US, and Canada. Predominantly, I think those three markets really are leading in terms of that interdisciplinary approach to end-of-life care. So that holistic kind of joined up approach. I think there’s a bit more forward. In the UK, I think we’re a little bit behind the curve. We, I mean, Cicely Saunders, obviously created hospice hospice care here in the UK, you know, and that model has now been reflected, you know, across the globe, but I think we’re very much practitioner or clinician led at end of life in the UK and we’ve got a little bit of catch Up to do with I think sometimes just letting go and letting people who have that compassion or that empathy to apply practical end of life experiences both for the individual and for family members but but uh but you know that’s a personal opinion. There’ll be a lot that disagree with that. And I you know and that’s that’s for them to disagree with, but I think having these conversations you do get a sense of where the community I don’t like pulling our market, but the certainly the community is leading and paving the way and as I say, Australia, Canada, USA, for sure.
Victoria Volk 10:35
There is a doctor too on that surviving death series. researcher and you know, he’s very much academic, but mentions us in Europe, and I say he’s in the UK as well. But but in Europe, I can’t remember exactly where but he does mention that to know, it’s this very, death is like this. It’s almost I don’t I can’t even explain how, yeah, I’m not sure how he worded it. So I get it wrong, no matter what I say. alluded to the same thing you did anyway.
Darren Evans 11:05
Yeah, I think because it is the unspoken word. I mean, even now. You know, we have we have a guest book, The D word, just to do to it. And you know, there’s a there’s a health radio, UK health radio show called the D word as well, because I think he we don’t use that word. And, you know, part of our process, certainly, part of what we see is our responsibility for after cloud is that we normalize it, we normalize the word, you know, this is something I found out as well through conversation, but around the bend. If you’re going around the bend, that’s an old phrase for mental illness. And that’s because in Victorian times, they placed we call them hospitals, but they placed them around the bend. So they’re out of the way out of eyesight from the general population. And that’s that meant, you know, if you were going around the bend, you were going to a mental institution, and again, it’s that sort of Victorian, you know, again, I think, morbidity as an example. So if someone died back in Victoria, you were aware of someone grieving because they were all in black, they were dressed in black, the curtains would be shut, whereas we don’t have that. Now, nowadays, you don’t know if someone’s grieving, unless they tell you specifically, we don’t we don’t we don’t mourn the way we used to mourn with the curtain shut and wearing black times are changing. And as I say, I think this period that we will find ourselves in, we found ourselves in through COVID, as kind, I’ve already said, but mentioned that in everybody is now fully implicitly where there are mortality, because it’s been presented to us by the media, you know, front and center stage in a multitude of colors. And I think that it’s it’s, it’s horrid time as it may be, but it’s but it’s it, I think it’s lessened the impact of the word death. And it’s starting to normalize the compensation for the general general population.
Victoria Volk 13:06
And one of my missions to starting this podcast was to get men to help society talk about grief, like we talked about the weather, and it’s an intro, because that’s it, that is about normalizing it, hearing other people’s stories, and that’s how we relate is their story. And we see ourselves in other people’s stories. And if people feel a sense of hope, after they listen to someone’s story on my podcast, that’s really what I’m what I’m shooting for. So your app would be hope for someone who’s in the process or experiencing, you know, someone who’s going through a terminal illness or like dementia or something like that.
Darren Evans 13:50
I was gonna say that’s an interesting one as well, because when we started this journey, as I mentioned, it was from a grief place. It was initially directed at end of life. And when we started our early discussions with people in hospice care, or in palliative care in the community, they don’t want to talk about death. They’re aware of the process they’re going through, but they absolutely don’t want to talk about death, or that that journey, people with dementia are aware that they’re losing their memory slowly but surely, and they’re more than happy to talk about that journey. And they’re more than happy to have those conversations and have the appropriate planning in place. So it’s, I found that fascinating myself actually, just those those two channels of thought. So we have slightly realigned it to open it up to more of a life tech kind of app. Because it is it you know, we’ve got, we’ve got my to give you two instances, interestingly, at one dealer in the states that two weeks into the beta became a grandmother. So her daughter started capturing moments within off the cloud. In the beta form of that process, so we’ve there’s a child there in the states that is now 15 weeks old that is being captured, or her moments of being captured the really important moments of being captured, which is fantastic. We have another doula Karen in New Zealand, who said, Actually, I’m going to turn this around and show my parents how they’ve impacted my life, not the other way around. So we sit more of a life tech app as opposed to the other end of the spectrum.
Victoria Volk 15:27
Well, here’s the thing we don’t know when our time is, right?
Darren Evans 15:31
No, we really don’t know. I’ve been posting more recently, actually is, what if today is your last? Or what if there are no more no more tomorrow’s it’s kind of a little bit like, I don’t like phrasing it like this. But insurance is kind of I want to create those moments or write those letters that I want to write before it’s too late. So let’s do it. Let’s just put them at least start capturing them.
Victoria Volk 15:54
I love that it’s like is that it could be a way to document your life.
Darren Evans 15:59
Yeah, yeah, we’ve got people that are journaling, storytelling. As I say, art therapy, music therapy, music is fast, fascinating. Because with the music therapist that we’re working with, in fact, one in particular, actually, Sandra, who’s in Ireland, she shows album covers to her to the patients in the hospital, is actually a nursing home. But she, she shows them album covers, and of course, it instinctively takes them back to that day that they might have played the album with their friends or family. Them she’ll pick a track from the album and play the track for them. And again, it invokes those emotions that they had at that time. So straightaway, it takes them back to that to that occasion. And, of course, it can be captured there. And then and shared with family and friends. We’re doing a bit of work in VR as well, because VR does a similar thing. You know, virtual reality headsets where it can take someone back to a time or a place, or location, and really invoke those memories. There’s a lot of research actually taking place in that in that area now from a psychological perspective. So the potential is that we’re working with various universities, from a cost psychology perspective on on that process. I mean, it’s early days yet, but that’s that’s certainly where it’s going, I think.
Victoria Volk 17:15
Dr. Kris Kerr, he is in that surviving death series. And he is he’s a palliative hospice care doctor. And so he had done a lot of research in end of life experiences of his patients, and documented what they were seeing and experiencing leading up to no, as they were beginning their transition with terminal illness. Yeah. And he actually referenced something, you had just what you just said something. And that made me think of that, but he has, in his TED Talk, he talks about a soul, an older gentleman who’s dying, and he was a soldier he was, and World War Two. And one of his visions was, it was very traumatic for him. He was having these flashbacks of, because his job was to transport the bodies. And his visions were really traumatic. And then they switched. And a soldier came to him and said, soon they will be coming for you. But it was a very comforting thing. And the vision, the affordable vision stopped, that horrible dream stopped, and suddenly he felt comforted by his comrades were coming for him. It’s just a really beautiful illustration of how the deeply rooted pains in our hearts come back to us as we’re transitioning to us, in a way, spiritually, on a soul level. Yeah. I mean, we could go very deep there, but I think I just made me think of that. I don’t know why.
Darren Evans 19:00
Well, no, I think we’re talking about trauma. I think there’s gonna be a lot of trauma related, Post Traumatic Stress Disorder from frontline workers, you know, they’ve been going through what the hell, I wouldn’t say that the sheer amount of work and exhaustion that they’re seeing currently, and this is, you know, everybody that’s involved in that provision of care are exhausted, they’re exhausted. And what a fantastic job they’re all doing. It’s just incredible, but I do foresee a need a huge need for them to be supported. When we do eventually come out of this horrible time. I think it’s imperative that they get the support. Whether it’s holidays or you know, rest and recuperation, as we used to call it in the in the in the forces, you’ll know that. I think it’s fundamentally important that they’re supported in his best way they can possibly be supportive because they’ve been doing a tremendous job. Yeah, but I think so. Post Traumatic Stress, I know whether or not that that that comes for three grief as well, again, I don’t know, but you you’re probably best placed to serve me.
Victoria Volk 20:06
In grief recovery, we say that trauma is what happens in grief is what’s left.
Darren Evans 20:10
Yeah. And I think that shock as well.
Victoria Volk 20:13
So I’m curious then how are you using this app in your life?
Darren Evans 20:19
And that’s a great question because we are so close to it, most of the time it was test. So, test, test, test, and I’ve been capturing all sorts of things. Just yesterday, as an example, we went out for quite a lengthy walk in the countryside. Just to get that fresh, I mean, it’s cold, but just to get that fresh air, but we took some video footage there. And then what we tend to do those we post it for the following day off within a few days, which is, which is great. I mean, it’s still there, it’s in draft or it’s published, it’s either or, but we know we have that content. And again, my son, and my wife actually wanted me to give my son a piggyback, just getting captured that sort of moment really, of being in being so we do things like that as family. But most of the time it’s actually test, as opposed to sort of my life moments. I think that’s because I’m really, really close to the app, I guess. But you know, I have written letters, just to just to give an example, you within within the app itself, you can search create a moment, you can upload an image, you can upload a video, or take a video in app, you can record your voice. You can write or dictate a letter, or all of those things combined, to make a moment. So what we’ve what we say to people is imagine you’ve got an old photo. Well, that’s great. That’s an old photo, but what memories does it invoke what you know, tell us about the time that that happened? And of course, you can embellish that with it with an audio or, or a letter if you wanted to, just to explain it. I mean, we’ve got I digress away from the question, but we’ve got people that now one patient that that’s in our working group, his mum gave him some recipes. And so he wants to maintain the family recipes. And given to his kids. He’s also writing goodbye letters as well, they want to call it goodbye letters. I spoke to somebody else about this last week. And maybe they should be Hello letters, unoccupied letters. So again, it’s just a different take on it. But you can use it for all sorts of things. We are ourselves capturing video, really an audio, a little bit of audio as well, because again, it’s the voice that strap mine that we have on our website. It’s her voice I miss the most I wish I could hear her again. Those words are actually from one of our board advisors, Roberta Chela, who she’s head of quality of life in hc one is sort of one of the largest residential providers here in the UK. But she lost her mum at a very young age, I guess similar to yourself. And I think she was 12 but she had a tape recording of a voicemail of her mum, and she lost the tape. And that’s a story in itself. In fact, she Roberta is going to be writing for us later in the year as a guest blog, all about that journey and all about that story. But when I started speaking to Roberta about this and she told me this I wrote it down. And it just encapsulates everything that after cloud is about it’s I have her voice I miss the most I wish I could hear her again. And of course, you can with after cloud if you capture it now it’s there for posterity. It’s there for future generations.
Victoria Volk 23:53
Yeah, well and I can say to I wish I would love to hear my dad’s voice.
Darren Evans 23:59
Hmm. Do you have many memories? Do you have you know footage or?
Victoria Volk 24:04
there’s no video and all of my I maybe have 10 pictures? Yeah. mean? My question though, is to I can see this as being something helpful for busy moms, young kids that may not necessarily have maybe the financial means to purchase a nice camera or video, like a video camera or something like that. And we all have our phones but you know, you get your pictures in one app, you got your videos that for someone who might be terrible about printing day because I was I was a photographer and my kids my youngest always reminds me that she’s got no baby book. And her siblings have like a baby book in the scrapbook. But yeah, the printing thing is an issue for me. So how Notice that I’m asking for myself. So to document my children’s birthdays or school concert or, you know, an accomplishment or something like that, how does that work? Like, how can you print from it? And is it a monthly subscription? Like, do you like how does that work? Like, do you have access as long as you are a subscriber? Or how does that work?
Darren Evans 25:28
Yeah, that’s a great question. So, I’ll answer the first question for the first part of the question first, and then I’ll come on to subscriptions. So printing is just well, as an example, you have your phone, you mentioned already, you can print from phone, just just by hooking it up with a USB or whatever you can, you can, you can do that for sure. All of those moments you, you catch up in app. So, as I say, whether it’s an image of video voice, or a letter, and letters can be dictated in app as well. So, you can speak to the app. And it will dictate your letter, you might have to edit little bits, depending upon, you know, your voice saw accent or tonation. But you can do all that in app. So that’s that’s the first thing to create that moment, or multi, multiple content types to create the moment in relation to subscription model, yes. So, it will be free, there will be a free base version for everybody to make use of absolutely, really, really imperative to us that there is that free model for people to utilize. But then, depending upon your needs and requirements. We embellish that product range as a subscription-based model. But again, very, very affordable, subscription-based model. Of course, that’s not released yet and won’t be released. Now, I don’t think until about maytime, which possibly might coincide with the Airdate of this podcast.
Victoria Volk 26:51
Yeah, yeah.
Darren Evans 26:54
But we, that’s the sort of that’s the sort of timeline we’re looking at at the moment. The beta is currently 15 weeks in trial. Fantastic feedback from with just Friday, had our first video interview, which is a dementia patient, who’s also a patient advocate. And he loves it. He thinks it’s fantastic for dementia patients, which I’m really, really proud of actually have to say. It’s Yeah. Fabulous. Doing something positive for someone. Yes. Tremendous. But yeah, subscription-based model, depending upon needs and requirements. I think from an ethical standpoint, we’re only going to guarantee 10 years. And I mean that in a genuine way in that I think it would be wrong averse to stipulate lifelong 199 years or, you know, I am aware of another platform, which this got these 99 years. And I think well, how can you absolutely say that you? Who knows what’s gonna happen tomorrow, but certainly 10 years, I think is, is a generalization and you can capture today. So going back to this, the anniversaries and the birthdays and those scenarios that you mentioned, I can, I mentioned already, my mom’s birthday is in September, and she’s gonna be 81. I could record a video message today and publish it for the first of September, which is my mom’s birthday. Knowing that she’s going to get that on her birthday and not before.
Victoria Volk 28:22
For me, I like that. Its just forgetting and especially those first of the month, birthdays that kind of sneak up on you and you flip the calendar, it’s like, shoot.
Darren Evans 28:34
it’s one of those things you can do whenever you feel comfortable about doing it and not have to worry about it again, you know, it’s, but But yeah, I think if you know, your daughter’s play at school, absolutely capturing in in the app, taking video, or different types of content, however you want to do that. And then it will be saved as a draft, but you can publish it and you can publish it to your daughter if you wanted to. Or you can publish it to yourself either the following day, or anytime in the future, knowing full well it will be there captured and safe in the cloud, as in after cloud.
Victoria Volk 29:11
So, tell me about the name.
Darren Evans 29:13
Yeah, that’s, that’s a great question. So, it was actually my CTO, Anthony came up with the name after cloud, which I thought was fantastic. It’s sort of we were toying with treasured for a while, as in, you know, a box full of treasures. And we were talking about with the name initially for it. For us, it was imperative that every stakeholder was catered for. So not only the individual, but also the loved one. So we have this grief cafe, as well as a support mechanisms community based support mechanism, so free to attend once a month, and is actually growing this community. But the name after cloud was was as I say, we were just chatting away one day, over coffee talking about the app talking about iteration Have the app. So before lockdown, so this was last sort of February time. And he said the word off after, after, after cloud on as soon as he said it, I kind of wrote it down. So that is it. That’s that’s just a fantastic article app. And that’s it. Yeah. And it’s been after kind of since we did it was called my off the cloud because of the URL. But then we realized, actually, the URL can remain my off the path because it’s yours. But the app itself is off the cloud.
Victoria Volk 30:30
Well, and if you have a group, it’s kind of our after cloud,
Darren Evans 30:37
Yeah. Yeah. It’s everybody’s off the cloud. That’s, I think that’s another Yeah, it’s a really good point.
Victoria Volk 30:44
So, let’s bring back the story to your mother-in-law. And that experience and what I mean, you kind of spoke to what prompted the creation of the app, but you care to speak more about that loss?
Darren Evans 31:03
Yeah, I think it was really the first grief journey that I’ve had close to us, I guess, in quite a while. I mean, my dad died. My dad suffered from cancer. I think when when I was six months old, they gave him six weeks to live. Yeah.
Victoria Volk 31:23
I’m so sorry.
Darren Evans 31:04
No, its life is part of life, isn’t it? And I think, you know, my, if I look at my life, actually, talking about grief. I lost my mum. I didn’t use my mum; my mum lost her son. So, I was four years old, and my older brother, I have two older brothers. And I lost one of my older brothers through a road traffic accident, he was knocked over by a car. And he was only seven at the time. So, the trauma that she went through as a mum, I just can’t imagine. I wouldn’t want to imagine. But I know that she was heavily traumatized at the time. But she had a child, two children, an older one and a young one to take care of, and kind of got on with life, I guess, in that respect. But my dad cancer really lifelong. From the time I was born, but to say six months old, again, six weeks to live. And he turned and said to my mom, she will vouch for me when she says this. Well, I’m not gonna go anywhere. Yeah, I’m gonna wait till my kids are old enough to look after themselves. And he did. We all grew up. He went through radiation. He lost his bottom jaw. Yeah, yeah. He was really one of the very early pioneers of radiation treatment for cancer therapy comes from the throat. And, but also skin grafts and things like I mean, skin grafts and operation after operation and trying to, you know, put his face back together, really, I guess, but none of that worked. And was he able to talk he was able to talk? I can understand him, whatever he said, and I think that’s why he liked having me around from time to time, you know, and I mentioned to you before I went off and joined the army and came back and he was, you know, he wouldn’t go out much, because people would stare. But with me, he feels protected, I guess, to an extent. So that was nice. Yeah, but but so. Yeah, I guess my grief journey has been lifelong. I think you’re my mother-in-law died two years ago, impacted more, I think on my wife. It’s really her first major loss. She didn’t lose her dad, again, through cancer a few years back, but I think losing her mum, in such an aggressive through such an aggressive disease, as Lewy body dementia is. Well, it was in this in this occasion, it doesn’t have to be I mean, I know people that have Lewy body dementia that had it for 10 years and are still living well. Even though they there is a cognitive decline. But But through this, it was very, very quick. And so, my wife, I think it’s impacted my wife more. And still does because grief, as you know, is a lifelong journey. And as, you know, my son as well, because it was him that, you know, spark sparked sincere interest about after cloud. Again, I can’t really take full credit or responsibility for it. It was it was he was the one that sort of intimated wouldn’t be grateful to do something for other people in similar predicament. So yeah,
Victoria Volk 34:44
Thank you for sharing that. I mean, I could talk more with the loss of your father because it just fascinates me that he was able to survive that long, but I just want to highlight though, and just kind of reflect back to you that if he never left the house or he, you know, wouldn’t leave the house that would have that alone, restricted the experiences you could have had with him to not. I mean,
Darren Evans 35:13
yeah, yeah, I think he probably did. But he did. I mean, he worked. Even even with with this facial disfigurement. He worked, you know, he, he carried on, he just, he was assigned, you know, ex-soldier himself, but he carried on working, you know, and he works in a college. And I would imagine that he probably gets stared at time and time and time and time again, I think what he didn’t do was go out socially, you know, restaurants or those types of environment, he would go to work and come home. And you know, I’d sit up and watch him come in. And in that sense, everything was quite normal. And I didn’t know anything different, apart from, you know, he was my dad. And as I say, I found it easy to comprehend and understand him because I’d always known him, but for the people, they would struggle. And I think towards towards the latter part of his life, it was worse. But I think that’s because he maybe got lazy. I don’t know. I think maybe just you there comes a point when you just, I’m not going to repeat myself again, because I’ve already said that once. But I got it. Straight away. I knew what he was saying he kind of, you know, yeah. But as I say, I didn’t start didn’t know anything different, I guess.
Victoria Volk 36:33
I suppose. Yeah, I suppose if you’re pretty much born into that experience, you wouldn’t know when you make the distinction to have loose body dementia, versus, like, dementia that maybe most people are familiar with?
Darren Evans 36:52
I’m not an expert in any way shape, or form in dementia, or Alzheimer’s or any relief related disease, only that with my mother-in-law, when I say aggressive, two years, probably from that initial, okay, something’s not quite right here to death. And in that sense, it was it was quick. And I think, latterly those those last sort of few months, we were so my, my, my wife and my sister in law were was sort of caring, they were caring for my mother in law, the primary care is essentially, and we were sharing that responsible responsibility between us as families, you know, mom would spend a little bit of time in our house here, and then we drive an hour and a half, two hours. And swap, swap, swap over the rolls, just to give each other a bit of respite, because it is, it’s hard work. You care with empathy and compassion. It’s my mother in law. But my wife probably needed that break every two or three weeks, you know,
Victoria Volk 38:01
Because you’re grieving during that process too because you’re losing a little bit of that person every day.
Darren Evans 38:06Yeah, absolutely. Yeah. And I look back now, and I wish we had alpha cloud, then really, that’s not a plug, it’s just, if we’ve captured some of those moves, I remember Actually, I remember vividly walking my mother-in-law at the front of her house, just up and down the road. Because slowly but surely, she was losing the ability to do that. So, we do that and I give her a bar of chocolate, she loved eating chocolate. So, I’d say you know, there’s there’s been chocolate and a scarf for one sheet of face would light up because she knew that, you know, there’s a reward at the end of it for chocolate, you know, and I know it sounds harsh, but it was a great way of kind of maintaining that ability to do something. And of course, that that slowly declined as well. But we, I guess, towards the end, anything we could do with whether whether it was a small pot or yoga or or, or a chocolate-based mousse, or something because you start to lose, I think Lewy Body Anyway, you start to lose that cognitive ability to swallow to taste to function. And of course, if that’s happening, you can see it physically on the outside, internally, it must be a whole week worse. And of course, that’s it’s a steady regression. It’s a steady decline. As I say, I’m not an expert, far from it, but I do talk to experts and I do talk to a lot of people that are, you know, providing specialist dimension-based care. So, I kind of learn little bits here and there.
Victoria Volk 39:40
I worked in a nursing home when I was a teenager and there was a devoted Alzheimer’s unit specifically for Alzheimer’s residents. Yeah, I just I can’t imagine what that is like to care for someone a loved one. That’s losing a little bit of every day in the grieving starts. And I think that’s true with terminal illness too. You know, what’s, you know what’s coming. But at least with terminal illness, you have a cognitive that doesn’t come in and out.
Darren Evans 40:16
No, no, yeah, we’re doing for some fascinating work in older people services, then with your virtual reality headsets. And taking people back to those moments in time where they can enjoy themselves. Even when they’ve not got a tremendous amount of cognitive ability. There might be some the chair as an example, in the nursing home, they can still be taken back to that magical moment, and you can still put a smile on their face. I love that. I mean, that, for me is just heartwarming, I, all of those things, the more we can do for people, the more we can just have that empathy and compassion and put the smile back on my face, the better in my view, and I’m all for the dignity.
Victoria Volk 41:01
What is your grief experiences taught you?
Darren Evans 41:06
Oh, that’s a question. For me, I think it’s just having the understanding, really, and even more so for employers interesting. I mean, I, we posted a blog post, just recently, and I wrote a personal piece about the actual guest posts, because I experienced grief in the workplace in a corporate environment. And nobody knew nobody understood, nobody even asks, asked, actually, they couldn’t really care. And I’m sure they could have known but they didn’t necessarily care. And I think it’s a duty of all employers to have the duty of care really, for their employers, you know, if you’ve got someone that is bereaved, or in a state of shock, through grief, they’re not going to be performing at the best or they they’re not going to be producing the goods, so to speak, or the numbers. And so the one thing I’ve learned is, as an employer, to have that respect, to give people the time that they need and the space they need, I think, to grieve. And that’s different for everybody, or at least the support mechanisms to assist people to grieve because again, I think that that’s something that’s, that’s, that’s missing, I think, really in the modern workplace. And of course, we’re all grieving now, aren’t we? Not through bereavement, but just grief of loss? You know, we were grieving for the little simple pleasures that we once took for granted. You know, I mean, wouldn’t it be great just to go to a coffee shop and have a coffee and sit down with a slice of cake? I mean, that just that simple pleasure.
Victoria Volk 42:52
Sit in a coffee shop? Yeah?
Darren Evans 42:55
We can’t do it, you know, when we were in lockdown, or in the UK, certainly, we’re in lockdown. Everything shut. And, and this is now the third lockdown that we’ve had. And I think from a mental perspective, as well, so mental health and well being, it’s gonna affect people, isn’t it? I think there’s going to be fallout from that.
Victoria Volk 43:12
This is never gonna end. Like, if you don’t see the light, yeah, you don’t feel or see this light at the end of the tunnel. And I just want to highlight the point that you said about employers, because thank you for saying that. And I think it’s, it’s looking at that role that you play as an employer as one with compassion and empathy. Because I gave a talk, actually, to my company, about grief and bereavement and, you know, most employers only offer or days, bereavement time or days. Yeah, all right, back at it lickety split, join like
Darren Evans 43:51
madness, absolute madness, I think really, for me, in a corporate environment, and I’m talking, you know, large employers that that have, you know, an extensive workforce, there should be an appropriately qualified bereavement officer, you know, call it a chief bereavement officer, they got, they got Chief Information Officers, chief executive officers, they got chief financial officers, they got chief officers for everything, but not bereavement. Why?
Victoria Volk 44:18
You know, maybe I should pitch myself to my company. Hey, why not? Yeah, my own job within the company.
Darren Evans 44:24
But what do I think, I think? I think employees need to take responsibility. They take responsibility in every other aspect of our life, they pay us our wages and etc, etc. that needs to be ownership, I think in terms of grief as well. To get the best from your workforce,
Victoria Volk 44:42
it’s just caring, just caring.
Darren Evans 44:46
It really is being human.
Victoria Volk 44:49
Yeah, kindness and caring. Go back to the basics. Like, think of empathy is like the ability to put yourself in someone else’s shoes. What would you need? What would you hope For, yeah, and I think too, that’s where I’m glad the conversation around grief is starting to change, and people are talking about it more, because more people then gain an understanding that it’s not about picking yourself up from your bootstraps, and, you know, driving on, it’s just a part of life, you know, that life death life, you know, we’re all gonna die, you know, this cold is called disconnected approach to our mortality. But also, then, that’s also looking at other people’s losses that that way as well, it’s distancing yourself from being vulnerable with someone, getting in that space with them, being comfortable getting in that space with them, and a lot of people are very uncomfortable doing that, because they haven’t connected within themselves and what they have lost.
Darren Evans 45:56
Yeah, that’s fascinating, you know, because I think it’s, you mentioned the here and now and having those meaningful conversations. It absolutely is about that. I started to well up when I was talking about my dad, you know, in taking him out and it cost there’s there’s that emotion because it took me right back to that of how he must feel. Yeah, so that’s, that’s something I’ve got to look at, I think inwardly, too, because it does it kind of evokes that emotion. Yeah, yeah. But no, having these meaningful conversations, being in here, and now present, as a human to human. I think it’s really, really important for everybody. Really, really, hmm.
Victoria Volk 46:38
So, during those days, when it was really difficult for your wife, or your family, I kind of liked to ask to like, what, what does give you joy, like what? In all the grief that you’ve experienced, throughout your grief, experience, what is giving you the most joy, and hope for the future?
Darren Evans 47:02
I think it’s the simple things in truth, I think it’s the little things that we just probably take for granted. My son, as an example, turns 13, this week, that gives us joy, no idea where the time is gone. But my wife, and I’ve been planning meticulously to try and do something nice, Ronnie, it’s a different way of living the kids I, I fear for them in terms of their mental stability as well, because, you know, they, they’re not seeing friends at school, they’re not having those interactions that we had as kids, but I do I am very, very thankful for technology. He, he is gamer. And there’s a little clique of gamers that you know, pretty much daily, certainly after school, when the works done, they will all just, you know, the play ship or thieves or mine call one of those get, you know,
Victoria Volk 47:54
My son is too.
Darren Evans 47:56
Yeah, it’s beyond me. But again, just talking to parents, as well is, thank goodness, they’ve got that, that, you know, they they’ve still got that ability to connect with each other, even virtually, you know, in this type of environment, but they’re still, you know, problem solving as an example in games. You know, they’re still using that sort of similar behavior to problem solve, which is fantastic. I see it as a benefit with a my wife agrees with me on that. I don’t know. But But yeah, I see it as a benefit for going back to your question. I think just the little things, really what gives us joy, for me seeing a smile on my wife’s face, knowing she’s grieving, knowing she’s still going through those hardships, that grief journey can take you down or on. And, you know, as is peaks and troughs, and you’ll know this yourself up and down, up and down, depending upon scenario. But it’s understanding that and have an empathy for that really, and not reacting. Or at least understanding that it’s probably grief that he’s doing this. But yeah, I think just just knowing that there will be a time when we do get back to normality of some description, that’s something to look forward to, I think, for all of us, and hope for the future. You know, hope that you know, people will have more empathy. When we come out of this. I’ve seen it myself during this time that people have been a lot more connected families have been more connected more than ever, actually. Even in a virtual environment. You know that when we had the first lockdown, you saw families having quiz nights together. I mean, they’re not as common now actually. But initially having Quizlet that was never even thought of before when none of us did this as families. families were quite disconnected and unless it was a wedding or a funeral or some kind of family celebration, you wouldn’t just connect really now as an example I find my mum every day I speak to every day I can see her every day on my video on phone, choose off cloud interest in the so she’s writing things for me but Connect with my brothers. I got two brothers younger and an older mentioned we lost the one but my younger brother who was nine years between us and this six years to my older brother, we’ll all get together on a chat with my mom. We didn’t we’d never done that ever before. And had it not have been for this time. I don’t think we ever would. So there are there are some good things that have come out of this as well, I think and I think that connectivity that humanity, compassion, the kindness that we’ve all seen, I hope that Well, I hope that that carries on. I hope it continues. I hope that people don’t lose that.
Victoria Volk 50:35
Let that be the virus that spreads, right?
Darren Evans 50:39
Oh, I’m gonna write that down. That’s brilliant.
Victoria Volk 50:43
Quote me on that then.
Darren Evans 50:46
I will indeed I will click on that. That’s fantastic.
Victoria Volk 50:49
Let joy and love be the virus that spreads.
Darren Evans 50:52
Yeah, I know. That’s it. That’s it. Twitter isn’t so kind of tweet, I think that comes out of this. Yeah, I think we put some more. Yeah, I’m going to leave that for you. That’s your quote. And I think it’s a fantastic quote.
Victoria Volk 51:04
You can you can put it anywhere and just put my name on it. That’s fine.
Darren Evans 51:08
I could do indeed, that joy and love be the virus that spreads.
Victoria Volk 51:13
Or may joy and love be the virus that spreads.
Darren Evans 51:16
May joy and love be the virus like it’s post pandemic.
Victoria Volk 51:20
Now, just just overall. Yeah,
Darren Evans 51:24
yeah. Now, that’s a lovely, lovely thought. But I say, you know, just just that compassionate empathy. I mentioned earlier that I’ve been volunteering since since the outbreak. So just in my local community and the way I live in small village, and we have so many volunteers that give their time freely to help others. And only again, I don’t think we’d have seen that had it not been for a pandemic. So again, hope that continues. I hope that that human connectivity continues because they love it. I just thank you for the work that you do. Oh, no, thank you for yours. I think it’s having these conversations is really, really important. I think it really, really important. And, yeah, God bless you as well.
Victoria Volk 52:12
So where can people reach you? If they would like to connect with you?
Darren Evans 52:17
Okay, great. I’m on LinkedIn, Darren Evans. They can email me Darren at the logic that’s DYLOGIC. code at UK. My son’s name is Dylan, hence the D logic. Because he’s always applying it has been from a young age. The website is myaftercloud all one word. So myaftercloud.com. And again, you can register on the site. And the app is downloadable through the app store. So, after cloud as an app.
Victoria Volk 52:53
I will link all of that in the show notes as well. Is there anything else you’d like to add?
Darren Evans 52:59
No, you know, just that you’ve been great. can’t thank you enough for your time. It’s been a pleasure.
Victoria Volk 53:04
Yeah, I think the conversation will definitely continue.
Darren Evans 53:07
Yeah, I really genuinely hope it does. But you have for me to you I wish you well with your endeavors as well. You know, notwithstanding the doula.
Victoria Volk 53:17
Thank you so much. I very much look forward to it. I’m not sure how it’s gonna play out in my area but yeah, thank you so much.
Darren Evans 53:28
you’ll be great, it’s a pleasure. And let’s let’s keep in touch.
Victoria Volk 53:32
Definitely. And remember, when you unleash your heart, you unleash your life. Much love.
Death/Dying, Grieving Voices Podcast, Takeaways and Reflections |
Takeaways & Reflections | Life, Death, & Legacy
SHOW NOTES SUMMARY:
Talking about end-of-life is never easy. And, receiving a terminal diagnosis (with a prognosis full of unknowns), is nowhere near easy either.
I reflect on what my guests, Dr. Chris Kerr, author of “Death Is But a Dream,” TEDx Speaker, and researcher of end-of-life experiences of terminal patients and 17-year metastatic breast cancer survivor, Anne Jacobs, shared with and taught me.
I have flipped how I feel about end-of-life experience and what I hope my end-of-days are like based on my training as an End-of-Life Doula and my conversation with Dr. Kerr.
Anne brings so much hope and sage advice for those diagnosed, caregivers, and the rest of us – I hope you listen. Live for today; it’s all you have guaranteed!
Resources:
A Conversation About The End of Life
Today I’m going to be sharing my takeaways and reflections from episodes 40 and 41. Episode 40 was with Dr. Christopher Kerr, who spoke about the end of life experience from his book in research that is written about in his book, death is but a dream. And also talk about Episode 41 with my guest Anne Jacobs who has been living with metastatic breast cancer for 17 incredible years. When I interviewed Dr. Kerr it was back in mid February, I was just about to start an end of life doula training program. And so I was excited to hear his perspective. In advance of starting that training. I also had purchased his book and had started reading it and after going through the program, and the episode went live on March 30th, which was dedicated to my father actually, because March 31, was his death versary. I call it and it was just very timely, the end of life training. Dr. Kerr on my podcast, the 34th year, my dad has been gone. It was just a very timely conversation for me. And I feel like the past two years have been full of full circle moments, really, ever since I became a certified grief recovery specialist.
And the other trainings I’ve taken since which you know, really everything at one thing leads to the next thing to the next thing to the next thing. And I think when we start to embark on really healing ourselves deeply. We see opportunity everywhere. And when we are consumed emotionally, it’s really difficult to see what is possible. We don’t really want to think futuristic, we don’t want to create goals for ourselves. Because it feels arbitrary. It feels kind of meaningless. Because when we’ve experienced so much grief in our lives, trying to find that meaning is really what many of us do. Which brings me to the conversation I had with Dr. Kerr and how towards the end of life. If we are well, I’ll say it if we are lucky enough to have the gift of time with loved ones before we pass and they with us. It is an opportunity to find meaning in the years that we’ve lived up to that moment. And based on Dr. Cruz research, that is what happens for many people who he’s done this research with. And but he talks about in the context of an environment that nurtures that opportunity, and so he talked a lot about the medicalization of end of life experience and, you know, said that majority of Americans do not want to die in an institution. But yet most do. He said too, you know, we get to this place of, of you dealt with a terminal illness, you can get to this place of medical purgatory, where you get released from the hospital and get sent home with to be with loved ones, and caretakers, and all the rest of it, when there’s nothing more that can be done, but then you’re kind of in limbo, you’re left to figure it out.
About The End of Life Doula Experience
And now, what’s missing for so many patients and family members? Is the education. They don’t know what to expect. family doesn’t know what to expect? What does dying look like? What are the signs, what are the symptoms? What might he or she exhibit, as in terms of personality? Will we be able to speak to them or talk to? Will they be able to talk to us all these things that kind of get? I don’t know, like, there’s just this lack of conversation around and honesty, to be honest, from what Dr. Kerr has said, it’s this lack of honesty, on the medical side of the process of dying, and just terminal illness itself. It’s this inability to be honest, you know, because a doctor’s goal is to exhaust all options. And, but what that is doing in the process is denying people of their own agency of what they want to do, or what they would, you know, maybe they would decide differently if they had the information if they had more information. And I don’t know about you, but what I’ve learned about myself is I need all the information, and then I need to make a decision, give me all the information and then I’ll decide. And there is no greater advocate for that than you, yourself. And hopefully, we all get to that end stage of our life. And we have that choice we are we have that option. And we have the ability to communicate that and if we don’t, that we have it in writing so that our loved ones can for us.
And so I used to think that I just wanted to go quick, and I didn’t want to really know what hit me and you know, or in my sleep right like this, you know, sleeping beauty kind of scenario. And I go to sleep and I don’t wake up and it’s a sleep for the rest of my life thing, you know, beautiful thing. But what I’ve come to realize through my end of life doula training, and also this interview and research through with Dr. Kerr, who that he shared with me is that end of life can really be one of the most beautiful experiences you ever have. It allows you the opportunity to complete, what is emotionally incomplete for yourself at the end of life is how I interpreted it, how it was described. And we very much do that in grief recovery. And what happens at the end of life with many of the people in this research, which was confirmed by the research is that loved ones who had passed come to visit those dying. And that can bring great comfort for them. And it can bring great comfort for the family as well. But there’s more to the end of life experience that I can speak to as an end of life doula in that. We each have the power to communicate what we desire at end of life. Now again, whether we’re given that option or not, is not our choice to make in my asking for a terminal illness so I can have this experience.
Leaving a Legacy Project
But do I want this kind of experience for myself and for my loved ones because I understand the impact that it has positively on the bereaved? Absolutely. So with end of life, we have a sense of agency If we’re able to communicate that, and here’s the thing, even before you get to the point where you’re not able to communicate that you can communicate that you can put it in writing, what do you want done with your body after you pass? Do you want your body washed, I had never even considered that before my end of life doula class, but you can have your loved ones wash your body. And it doesn’t need to be your whole body. It can just be your feet, it can just be your hands, they could wash your hair. You know, it doesn’t have to be it can be whatever you want it to be. What kind of legacy do you want to leave? What you know, and we can do something what’s called a legacy project, where I as a doula can come in, and we can create something that is left behind. But in your honor, and in a way that where you feel like you’ve given some value to your loved ones, that your life is giving some meaning. Some people might have someone dictate and write out there thoughts. Maybe as someone who’s in the process of dying, you want to write a letter to all your grandchildren. That can be a legacy project.
Perhaps there’s a collection of things that you’ve collected over the years and you want something like a collage made, or you can involve the family in legacy projects as well. There was a beautiful story that was illustrated about a woman who she was a very, she was very well known in the creative and in the arts industry. I believe she like painted pianos. I’m not even sure she just very artsy fartsy kind of kind of Lady and well known. And she I think she designed costumes to or, you know, something like that. And her loved ones and friends. She had actually, when she was in the process of dying, someone had given her a chandelier that was made out of Barbie dolls. But all the Barbie dolls had the same swimsuit. You know, like those synchronized swimmers. They were it was like they were in a shape of synchronized swimmers as the chandelier that was made in, you know, with these Barbie dolls, which is, uh, wouldn’t it be neat? If we could if I could do that, if we could coordinate this human synchronized swimming, you know, in, you know, event or whatever. And her loved ones and her family did this very thing that was on her heart that she wanted that she thought would be the neatest thing. As a creative person she wanted, she would have loved to have coordinated this and she would have been the one coordinating it. And she did. You know, before they knew that she she didn’t know if she was actually going to live to see it to fruition. And so every idea she had was documented. And they came up with the swimsuit, the swimwear for everybody. And they did this beautiful choreographed, synchronized swimming, impromptu thing in the middle of the city where, you know, they had a huge where the huge fountain was.
And it was the most beautiful video and I’m actually I’ll put it in the show notes, because this is the best example of a legacy project that was shared in our training. Now, it doesn’t have to be that elaborate or anything like that. But it was just, it was just beautiful. And so as the person dying, you can create yet one last piece of legacy and you can involve your family and it can be a very beautiful thing and experience. And also to as an end of life doula. We are the buffer. We are the bridge between the hospice care team and the family and the one that’s sick, and bring great comfort for the spiritual and emotional aspect of the person who’s dying. Which, you know, the hospice care team, the wonderful job that they do, their focus is on the physical person, you know, on the physical body, keeping the physical body comfortable, but what about the spiritual and the emotional, right? that and so that’s where the end of life doulas come in. As Dr. Kerr said in the interview, he said we treat dying as a medical problem to address or solve. When it’s really about a closing of a life. It’s not about a failing body part. And he went on to say that people don’t die in parts, they die in totality. And totality of life is defined mostly by relationships. And so medicine takes something that is ultimately a human experience, and then sterilizes it into something it isn’t? And I couldn’t help but think about my own dad’s experience of, you know, being in the nursing home, and dying in the nursing home at age 44. And how this environment just does not nurture and foster connection. And yeah, it just very much sterilizes the process of dying. And I just couldn’t help but think that, oh, my dad would have had this opportunity, if only he would have been able to experience a good death, and have some say in that for himself.
Telling the Emotional Truth
But I think so often, too, as the person dying, we don’t want to burden anybody. A lot of us are afraid to burden people. And so even in grief, we do this, we don’t want to say how we really feel because we feel like then we’re burdening someone else with our emotions. And how we live is how we die. And so if we have that mentality of not being able to be honest about how we feel, and we when we’re living, we’re going to go out that way too. But wouldn’t it be such a beautiful experience, a more liberating and freeing experience, to be able to live the rest of your days and live out your days? With the ability to be honest, to tell the emotional truth about what you desire, what you feel, what you need, and how you want to experience your last days like that. That’s your last test. That’s like your last that’s really the last opportunity you have to don’t even know what the word is. Yeah, like fully express your sense of agency, I suppose. So anyway, this conversation just ends the conversation and the end of life doula training just really opened my eyes really flipped my idea of what I want my end of days to look like.
I just really hope that one day, however, it happens that I do have this opportunity, just like described by Dr. Kerr in his episode and in his book to have this beautiful experience with my loved ones where they to feel some sort of Completion with my passing that’s really what I’m, I took away from my training and from this episode, so I hope you listen to it because if you know someone who is in the process of going through a terminal illness or you yourself are or if you’re like me and you know are healthy and but you know just thought to like you just want to go quick, you don’t want to know, I understand the all the impact that has on loved ones left behind. And dying can be a beautiful thing. And that’s what this has shown me Dr. Kerr episode, the training that I had, it can be a life affirming experience. As Dr. Kerr said, he said dying is it’s like post traumatic growth spiritually and psychologically. He said to what’s good for the patient is good for the loved ones. And so, I’ve definitely been impacted by his work. And by the education that I received in my end of life doula training for sure. So I hope you check that episode out and even Dr. Kerr’s book death is but a dream.
Live Today To The Fullest & Have Hope
Moving on to my conversation in Episode 41 with Anne Jacobs. First of all, I knew I was gonna cry during the episode. And she had such sage advice for whether you’re someone who has been diagnosed with cancer or you know someone who has or you’re healthy, you cannot listen to her story, and not reflect on your own life, or on the life of someone you love. And she said, you know, before cancer, she took for granted that she would wake up the next morning. And yet, now there’s this, you know, for the past 17 years, actually, it’s been 18, but 17 years with metastatic breast cancer. She’s had this unwanted houseguest that she can’t ignore. And she even said, and when I do for too long, it doesn’t serve me. Well. She said. And, you know, so you can try and put it out of your mind. But every morning is a reminder, like, Oh, yeah, you know, it’s like, it’s almost like when my husband, he has back pain, he’s Oh, he’s had chronic back pain. And, you know, when he’s laying down, he doesn’t feel it, he feels perfectly fine. He feels no pain when he’s laying down. Fortunately for him, you know, there, I know, there’s, and he’s aware of this. There’s many people with back pain that can’t sleep because they have such horrible pain, no matter which way they lay. And although he does get up at least once or twice, maybe sometimes even three times during the night. So it’s not like he’s getting the best sleep. But he’s not getting up because he’s in back pain. Is my point. But you know, even he has said, you know, he goes to sleep. Or even if he lays down for a nap, or is laying down he can he there’s a moment where he forgets until he goes to get up. Oh, yeah, that’s right. This is my reality. And I’m not comparing back pain to cancer. But I’m comparing this idea of how it’s easy for him to forget. But also for her to who’s even dealt with this for 17 years.
So when she’s getting comfortable, when she’s feeling good for maybe several days, maybe even a week or two, she can kind of forget, you know what she’s really living with. But she is quickly reminded that at any time, the shoe can drop. And that’s what she shared. It’s like, I’m just waiting for the other shoe to drop. I’m waiting for that day to come or somewhere. I’m told, there’s nothing more we can do. This treatment isn’t doing what it what it should be. There are no other treatments, there are no other options. And she’s fully aware that that day is going to come she just doesn’t know when. And it’s one thing to experience that I think for three months, six months a year, maybe even five or six years, but 17 years of her life has been spent fighting this thing in her body that this unwanted houseguest that isn’t going anywhere. She will die of metastatic breast cancer. And she knows this. She just doesn’t know when. And so what better teacher for all of us to live for today, to live today to the fullest. To not wait around to write that book or to ask that person out or to make that phone call or to make amends or do something on your bucket list.
Try out for the play that you’ve always wanted to do bungee jump skydive send joy to other people. I mean, there’s just so many ways that we can live each day to the fullest it doesn’t have to be grand. It doesn’t have to be big it can be just simply really stewing in gratitude for today. And so she gave so much hope in her message to not only people who may just be diagnosed with metastatic breast cancer or people who’ve been diagnosed with a terminal illness. But also for the rest of us who are healthy. That, you know, it doesn’t need to take like, why does it need to take a terminal diagnosis for us to wake up to our own lives? Why does it take this catastrophic, life changing event that changes the trajectory of your the rest of your life, you know, she can’t plan trips. She can’t plan for three months from now. She can’t plan period. She can. But she can’t, you know, it’s like this double edged sword, it’s, you don’t know if it’s going to come to fruition, you don’t know how you’re going to feel you’re not going to buy tickets, you’re not going to buy plane tickets, you’re not going to book a hotel, you’re not going to do all these things you would normally do because you don’t know how you’re going to feel. Right?
Bringing Story and Knowledge Through Grieving Voices Podcast
So I held so much love in my heart for her during our recording, I still do. In fact, I’m going to have her back on a regular basis to check in with her. We plan to record every few months, I think five months or so four months, something like that for however long I don’t know, I don’t know how long, right? It could be for the next 10 years, God willing, I’m still podcasting. 10 years from now. If I have grieving voices exist 10 years from now. Hallelujah, that I mean, I can’t even imagine, I can’t imagine that. But how wonderful that would be all the conversations I can have, that I get the opportunity to have. In that time, like, it just feels my heart to even think about it. I’m actually approaching my 50th episode, it feels like next week, but it’s really what is it nine episodes from now. So nine weeks from now, but I actually have episodes into ready, you know, to edit and stuff into July and August already. So I’m excited to hit that milestone of 50 episodes because a lot of people don’t who start podcasting many people don’t. So I’m very proud of this platform that I’ve been nurturing and the guests that bless my presence, and yours with their stories. I just feel so blessed to be able to do this and to bring and story to you to bring the knowledge of Dr. Kerr and, and everybody else who comes on my podcast. It’s with great intention that I have these conversations. And it’s to bring hope. It’s to bring some introspection, to your life to your day.
And probably some gratitude to right that, you know, there’s no higher hierarchy of grief, there’s no story that’s, or no one’s grief is better, or, you know, more important or more valid than anybody else’s. But I think as humans, we naturally when we hear someone’s story, and we think we might think to ourselves now actually, someone just said this to me not long ago, you know, hearing that this other person’s story made me think, oh, man, yeah, my life isn’t so bad. You know, we don’t want to minimize our grief. We don’t want to minimize what we’ve gone through. So if you’re listening to this, please don’t do that. But if it brings some perspective to you, and that’s a good thing. You know, if you’re willing to look at it that way. It can really bring some healing for you to think about you know, I think is really just thinking about other people, right? I actually told this to someone too, not that long ago, the fastest way to get out of your own stuff in your own head and in your heart is to focus on other people focus on helping other people. So anyway, I got off on a tangent there but and story just really touched me in in a really profound way. And I mean, so much. So like I said, I she’s going to be an ongoing guest the first one ever and I look forward to catching up with her again in a few months, and bring in her her update to all of you. And I think it’s a wonderful thing to give her this space to do so to share her a piece of her journey with others, for the sake of helping others, she’s helping others when she does that.
And I know she knows this. And also too, when I’m, you know, going through the end of life doula program, and just understanding the importance of like, you know, of legacy, and what do we want to leave behind? What do we want people to say about us, once we make our exit, and I just really want people to hear from an over and over and over. And if I can give something of that’s really a labor of love for me, and also something that is meaningful for her to her family someday, then, and I can coordinate that and orchestrate that and put that together, like, you know, in the form of this podcast, then I I’m all for it. I’m here for it. And so I presented her the idea and she loved it, she was honored to be asked, and it is my honor to have her as an ongoing guest. So look forward to seeing more of on the podcast coming up. But her story is definitely a road less traveled. There aren’t many people who have lived as long as she has lived with metastatic breast cancer. And on top of that, with her two, triple positive metastatic breast cancer, which is even like, I was kind of doing my own research and things and it seems to be one of the most it is the most aggressive is triple positive. And she’s managed to, through her own hope for tomorrow, and faith in the treatments and her positivity like this, she exudes positivity, if you listen to the episode, you just you feel it when you listen to her voice. I am not surprised, I guess when I when now that I’ve gotten to know her and I hear her story, and I hear her talk. And, you know, through email correspondence and things, it’s not surprising to me that she’s made, you know, made it 17 years with this beast, you know, in her body.
Grief Doesn’t Stop
And she said, you know, in the beginning, it’s like, you feel like you’re dropped into a foreign country with no map and you don’t know the language. And I think that’s true for grief in general. In an with an a diagnosis such as hers, I, you know, it’s just like this, it feels like such heavy grief to me to all these losses that she described, you know, being a young mother with this diagnosis, and you know, and even then, like not, when you don’t know, you don’t know, like, you don’t know what you don’t know. And so, she didn’t know how much time she would have in the beginning. And she didn’t know she’d be here 17 years later. And so, you know, it took her some time to even probably embrace the idea that she could be present in her children’s lives and in with her, you know, significant other spouse for this long. You know, it’s like, I would almost imagine, like, you’d be even afraid to entertain that idea as to not get, you know, depressed and disappointed. And, and it’s like, how do you stop that committee in your head, like, you know, from going off the rails and telling you, you’re ridiculous for thinking you could live that long. And you know, I just feel all the feelings. When I think about if it were me in that position, and I just, it just felt really, it feels really heavy. To me, it feels like a really heavy experience, but she is just so fully embraced this deck of cards, she has been dealt and with such grace and probably not getting it perfect all the time.
You know, I mean, how can you there’s no manual for you know how to survive metastatic breast cancer for 17 years. And you know what, I have every confidence though, if there was one, she could write it, you know? Maybe I’ll have to suggest that to her a manual for living with metastatic breast cancer. There you go. And if you’re listening to this, there’s your book idea. But yeah, I just really, I really loved my conversation with her, I really hope you listen to it. And it’s for everybody. It’s not just for people in her situation or a caregiver, or it’s there’s something for everyone. And there’s one thing she said to that I just want to end with, if you allow yourself to feel deeply, you interact with others at a different level. And that is so true. And I talk about this a lot in my social posts, and in blog posts and things like that, it’s grave just really has a way of disconnecting or disconnecting us, from others and ourselves. And until we allow ourselves, to feel deeply and to really dig into all of those feelings. That disconnect only gets wider and wider. And so the road back to yourself, can feel really lavoris, then that was my experience. I’m not saying that is for everybody. But I think the longer we allow that gap, too. You know, or the more time that we allow to pass and that, the more the wider, we allow that gap to get of that disconnect from ourselves and our grief, and to other people. It’s just really that much harder to find our way back to ourselves again, because what happens is in that time, you have more losses. You just have more loss. Because grief doesn’t stop. Because you lay down in bed at the end of the day.
You know, tomorrow, something else might happen. You might have another loss or grief experience. He could gotcha, you know, lost your job in another lockdown. Kids have to home school again. You get a diagnosis, someone you love gets a diagnosis, you lose your house, you have financial hardship, whatever it is, your house burns down. I mean, there’s so much catastrophe that can happen in our lives that is that you don’t ask for and it’s not planned, you don’t know. And those things continue. You know, we continue to have experiences like that and you can have micro losses to just, you know, a friendship that falls away. You know, an argument that, you know, causes a disconnect in a relationship for a time, just all these little things. job stress, career stress, or you know, career grief, job grief, you know, you hate what you’re doing, or you love what you’re doing, but you hate your boss are, you know, you’re just not getting along, or, you know, whatever it is. These things are ongoing in our lives. And so, because life doesn’t stop lifeing, right? There’s my quote for this episode, life doesn’t stop lifeing. Ain’t that the true? And so if we can take control, a little bit, take 1% responsibility for what is going on in our lives. As it comes as it refers to grief. Then we feel more empowered to deal with those things as they come. And that’s what grief recovery is done for me.
And that’s what I talk a lot about, you know, I also say to it’s like you’re suffering already, you might as well be suffering and moving your feet, suffering in taking action. And that’s really what grief recovery. That’s the message I really want to send in that. Whether it’s been three months, or three years or 30 years, since a diagnosis since a loss. You know, since a relationship fell apart, whatever the grief experiences, no matter how recent or no matter how long it’s been. The worst has already happened. But I can guarantee you, there’s more things to come. And so do you want to be prepared for those things? Or do you want those things to stack on to the crap that happened before. You’ve already suffered, you already are suffering. So let’s do something about it. Let’s empower yourself. Empower yourself with the tools and the education and the knowledge to know that when the next thing hits that you’ll be okay. And that’s the hope. That’s the hope to know that you’ll be okay.
P.S. If you have any questions on anything that I’ve shared today, or any services that I offer, please don’t hesitate to look me up on my website. And remember, when you unleash your heart, you unleash your life. Much love.
