Cancer, Cancer Thriver, Grief Stories, Grieving Voices Guest, Grieving Voices Podcast |
Anne Jacobs | The Road Less Traveled: 17 Years With Triple Positive Metastatic Breast Cancer
SHOW NOTES SUMMARY:
Anne is, what is called in the metastatic breast cancer world, an “outlier.” She’s lived with triple positive metastatic breast cancer for seventeen years. And, for the past seventeen years, she’s gone to sleep and woken up, not knowing when the other shoe will drop, and being out of treatment options.
What does this do to the psyche of the human mind? How does one even begin to comprehend the weight of this diagnosis and prognosis? So many unknowns and what if’s…the overwhelm and weight of it all…I can’t even imagine.
And, if you can’t imagine what this is like either, be a fly on the wall of my conversation with Anne, someone who has been white-knuckling hope for nearly two decades. And who has, somehow, managed to find a sense of peace with what is.
This is a podcast for all; to experience the fragility of life and the depths of joy found in the most mundane things – all within two hours. And, you don’t have to receive a diagnosis to feel Anne’s words for yourself.
Take all of her sage wisdom in and, as a result, be, do, and create TODAY as if you won’t have tomorrow.
RESOURCES:
CONNECT WITH ANNE:
Victoria Volk 00:00
Thank you for tuning in to this episode of grieving voices. I’m very excited about this episode today because if there’s any episode one episode that you listen to, I hope it’s this one because I just feel very good about that. The hope that this episode will bring to people. I want this episode to cause self reflection and introspection for you. As you’re listening. And after you listen, I want you to send this guest all your love and energetic hugs and vibes to her. Today’s guest, her name is Ann Jacobs, she was born and raised in Michigan and has been living in California for the past 37 years. She has a wife and mom to three adult sons. And she was diagnosed initially with stage three breast cancer in 2003. Less than a year after her treatment ended, she had a backache, that wouldn’t go away. And eventually was diagnosed with metastatic breast cancer, which is the same stage for those who live with metastatic breast cancer beyond five years are called outliers. And today and is going to be sharing her story with us. And I’m feel very blessed to have her presence here today. And thank you so much for agreeing to be on my podcast and sharing your story. Thank you, Maria, for having me here. It’s a I’m humbled, and I’m honored. I’ve enjoyed your podcast. So, it’s, it’s a, it’s a treat for me to be able to share with you. Thank you, it’s my honor, because we’ve had some email correspondence leading up to today. And it just, I didn’t even get my tissues ready, but I’m thinking I might need them. I just feel like the state of the world, collectively, each person in this world is going through something right. And you could have passed me on the street and looking at you, you can’t see her guests. But looking at you, I there’s nothing that says your body is just full of cancer right now. Like there’s there’s nothing in like, I don’t see that on you. And I just want to make that very clear to the listeners because we never know what people are going through. Truly. We never know. Let’s start with your diagnosis. Let’s start there.
Anne Jacobs 02:36
Um, well, the I found a lump in my left breast. I would by doing breast self examination, actually in November of 2002. And I have lumpy breasts. And I thought okay, well that’s interesting. I didn’t really pay any attention to it for for November in December it it was I couldn’t find it. It was obviously still there, but I couldn’t find it. And then in January, I felt it again. So, I called my gynecologist office and requested to come in to have a look at it. And then this sort of set the tone for my future cancer journey I you really had to push to get an appointment to I said, I have a lump in my left breast. I need to come in and get it checked out. And the schedule of gal said oh, you know, we’re not scheduling ups for three weeks out. I don’t I don’t think you understand what I missed. I said when she said well, if you want to come in, I see that you can come in for your annual exam and I said great. You know, put me in for that. So, I went in in about a week that my doctor felt it sent me right away to get a mammogram. It did not show up on the mammogram because which I did not know at the time, I had dense breast and tumors are hard to see in a mammogram. So I walked across the hall, got an ultrasound, it was there plus some other questionable spots, had a biopsy. And by the time I had a biopsy, there were three lumps that they biopsied. And then I had surgery. Fortunately, my surgeon when I met with him, he understood the importance of or the urgency of me getting in. He said we can get you in for surgery for three weeks. So that’s not going to work. I need to get in right away because I intuitively knew this was fast growing, which it was because when they did the surgery, and I actually had both breasts taken off. It’s called a bilateral mastectomy. I had five tumors, and this was all within a month, I think so I did that. I’m I went through treatment, which was aggressive at the time from March until August of 2003. And then in 2004, we were up at our lake in northern cottage in northern Michigan and I got a really bad backache. But my kids were little I’m running around, I thought, oh, I tweaked my back. So, I got a massage that seemed to help I came back home to California and the backache didn’t go away. So after 2x rays, it was determined I had cancer in my lower spine, in the L three l four l five area in my left hip. And then there is a questionable spot after some more scans or a questionable spot of a spot in my lung, which eventually turned out to be cancer. But in oh four, it was so small, they couldn’t biopsy it, they just watched it. So that that’s how my my metastatic cancer got diagnosed. They didn’t do scans after initial treatments, back then they do now and I think if they had, I probably they probably would have found that the cancer was already there, just based on conversations I’ve had over the years and things I’ve learned, but it wouldn’t have made a difference because if it was already there, I would have just started another treatment, you know, eight months earlier than later. So um, you know, sometimes you have regrets in life, but I don’t worry about that part. So that’s how it was diagnosed, and we just went from there, I’ve been on treatment ever since. And mine is called triple positive, which means in the, the cancer lingo, I’m hormone receptor positive, you can be estrogen positive, or negative progesterone positive or negative. And any combination of those, so I’m positive for both of them. And I’m also positive for it’s called her h er, and the number two and then a slash and EU, her to new and sometimes they call it just her to cancer. So those characteristics are important because that dictates what type of treatment and drugs that you can have to fight your cancer. So I’ve been doing that since 2004, very humbled and blessed to still be here.
Victoria Volk 07:31
Okay, did you all catch that? It’s 2004. It’s amazing, it’s really amazing.
Anne Jacobs 07:45
Yeah, it is, it really is. Every day, when I wake up, I say thank you for yesterday and thank you for today. And because I mean, truthfully, that the scary thing about the metastatic breast cancer is that I would be actually right now because I’m the drug I’m on is keeping me fairly stable, I’d be shocked. But it’s not out of the question. Like in six months, someone could tell me it’s, you know, riddled throughout your body now, because cancer has a mind of its own. That would be quite a surprise. But you that’s one of the things you live with is you just don’t know. Like, if or when the flip the switch is going to flip because there’s tragically there’s many there’s actually a lot of young young women with young kids who don’t live as long as I do. There’s some women that are living you know, 2025 years out so I hope to be one of them at some point.
Victoria Volk 08:48
Wow, that’s incredible.
Anne Jacobs 08:50
Yes.
Victoria Volk 08:51
25 Wow.
Anne Jacobs 08:53
It’s not It’s not like the quote unquote norm but it’s also it’s out there. So that gives everybody hope. You know, when you hear even for me, you know, I know when I talk to women who are first diagnosed in either you know, in person or online, that knowing that I’m 17 years out gives them hope so knowing that there’s someone who’s 25 years out gives me hope.
Victoria Volk 09:19
That’s incredible. So as of today, where’s the cancer at? you know?
Anne Jacobs 09:26
So, it’s still the I had radiation on my left hip which killed it. That’s what I say. Kill the cancer. My left tip at work. I still have cancer in my L three l four l five area. I’ve I’ve had radiation in that area as well. And then the spot in my right lung has grown to where I have. Well, I think I have about half of my right lung capacity. And it’s it’s It’s active in my right lung, but again, it’s stable. So, what that means for me is that it’s not it’s not growing in size nor intensity right now. And then my lower spine right now is what they call no evidence of active disease, or an E A, D, which means my last scan, you can see the cancer in the PET scan this PET CT scan, but the cancer activity is in the normal range. Meaning it could like if you saw it on scan, you didn’t know it was cancer, it could be just some other metabolic thing happening in your body. So, I’m very, very grateful it it basically it hasn’t spread from the original diagnosis front in 2004. Which, that’s kind of unusual, too. Because if it’s this is not, you know, usually the norm is it goes to your bones, and then to an organ and then it can go to your brain. So in the organs are usually the lungs or the liver. That’s not grounds in stone, so to speak. But that’s sort of like the normal, I would say, normal, or most common path. But there are women who have it in other places in their body as well. And then just in case someone doesn’t know, once you have breast cancer in your breast, if it travels to your lung, it’s not called lung cancer. If it goes to your liver, it’s not liver cancer, or your brain. It’s not brain cancer. It’s still breast cancer in a different part of your body.
Victoria Volk 11:47
Yes, I’ve actually learned that over the years as well, iit’s where it originated. What does? What does a daily day like? What is your day like? Today? Like? What is a typical day like for you, man, if I could talk here?
Anne Jacobs 12:06
Well, I have to pull. I wish I could have a typical day. One of the things I do, like I mentioned that when I wake up, I just I’ve been saying it for so long. So, this automatic thought of thank you for yesterday and thank you for today and then I kind of just take stock of Okay, what’s happening with how do I feel this morning? You know, it depends on what treatment I’m on, if that will allow me to function throughout the day. This one that I’m on right now it does. So, sometimes I can wake up and I’m exhausted. And I think All right, I’ll get up and brush my teeth. That’s all I can do. And I have to go back to bed. Some days, I get up, brush my teeth and say, oh, you know, I’m feeling okay. You know, I’ll get up, I’ll take our dog out for a walk. And then it’s sort of like checking in with myself throughout the day. There’s also days when I can be just going along and this happened about a month or so out probably before Thanksgiving, actually now. I was this was my baking day, I was gonna bake and I had everything out and I’m very messy. And something happened and I just, my body just went from I had to be on the couch for the for the afternoon and my husband came home and said, Okay, you’ve got flour and baking soda, you know, everything’s out. But I have to be prepared. I don’t have to be, but I am mentally prepared that I can make a plan and I have to call and cancel. So, it’s kind of a roller coaster. But my my day yesterday I felt good today I feel good. So, I you know got up I did take our dog for a walk. And then I took our little dog for a shorter walk. I had to do some paperwork at home. You know, trying to get my mom the vaccine COVID vaccine in Michigan, we’re all trying to do that. So worked on that. I cooked dinner. I was out in the garden, checking my plants. So it’s a very measured kind of time. The days are kind of measured for me as far as my energy level goes, I’m just checking in and I’ve learned over the years. Okay, if I have a big day on Saturday, let’s not have a big day Sunday. Just kind of a recuperation day, and then we’ll see we’ll see how Monday goes. And this the drug on mine now it’s called in her to its I’m handling the side effects really well. The last drug that I didn’t it was a true chemo drug. It’s called abraxane and I it worked really well on my cancer I kept it at bay kept it stable. But my quality of life got to be, I literally couldn’t even get out of bed to go brush my teeth, walk across the room, brush my teeth. So that was like an Olympic event for me. And then I said to my oncologist, okay, I’m, I’m at the fork in the road, I can’t do this one anymore. Let’s, you know what, what else? What other options do I have? So it’s a, it can be an emotionally exhausting existence. It can be, you know, I can run the gamut of emotions in one day. Or I can just get up and like, Okay, I’m feeling good, we’re just gonna power through, or I can get up and just feel good. And I don’t have to power through. So, it’s this balance of, what do I need emotionally? What do I need physically, spiritually? kind of combination of things. enough that that answers your question. I hope I didn’t confuse too many people.
Victoria Volk 16:10
No, absolutely. But I think that’s a wonderful point to bring across just for anybody, anybody to check in with yourself. Like you said, when you’re having a big day, Saturday, maybe Sunday is not, you know, you take it easy. And I think that’s a good lesson, just a rule of life. It’s like, why does it take us to have a cancer diagnosis? To check in with how we feel you with what’s going on with us.
Anne Jacobs 16:38
Yes, that’s actually that’s a, when you said that I kind of got it kind of got choked up a little bit. Because when I got the metastatic when we got the first diagnosis, it was okay. This is there’s a beginning to treatment and an end to treatment. So, we will, as a family, we’ve got these bookends of, you know, beginning and a start. And then when I got the metastatic it was just like, oh my god, you know, everything when the calendar went from, you know, volunteering, carpool, helping friends, you know, everything just gets cleared out. And I just, I said no, to, I had to say no to everything, because the cancer gave me the permission to do that, like you just said, and during that time, it was, was actually very freeing. I remember this, and I thought, holy cow. I was really doing probably too much before. I could, but you know, I loved volunteering. I love being seen people I love carpooling with the kids. I wasn’t doing anything I didn’t love what you know, for the most part, but when I had to clear the calendar, it just felt it felt very freeing. Like, okay, now what, what do we want to put back in, purposely put back in. And that was an unexpected, and what I call almost like a non cancer feeling. because like you said, you can do that in. I could have done that at any time. But there was a part of me that felt like, well, I should do this, or I have to do this. When I really just clear the calendar and say purposely, you know, we have a family. So, what do I have to do? What are the priorities? Just take that time to sit down and, and focus on that instead of for me? I’d say yes to everything that made actually a big difference in the non cancer quality of life, if you know world, if you will, so
Victoria Volk 18:50
To force you to live with intention?
Anne Jacobs 18:54
Yes. Because I do. Yes, absolutely. That’s perfect. Yes.
Victoria Volk 19:01
When you had then when that kind of hit you, when, when you had time to process some time went by and your kit, you said your kids were little, what was that grief that you experienced? And I don’t want to impose that you had grief, maybe you don’t recognize maybe you probably didn’t recognize it at the time. But in hindsight, maybe what were the things that you were going through and feeling having young children and having this diagnosis and, and not maybe being able to do the things that you wanted to do with them? Right, and maybe your career I mean, that obviously probably changed or, you know, whatever you were doing with your life up to that point and the volunteering, like you You couldn’t volunteer them. So, it’s like, free and at first but then when you had some time pass, what was what were you feeling when that hit you?
Anne Jacobs 19:56
I think you’re right. I didn’t look at it as as grieving or grief, I use the word loss quite a bit. You know, I and I had sort of different categories of loss you know, restart with the the first surgery, you know, I wanted both of my breasts gone my right breast, you know, was fine, but I considered it to be fertile ground. And I wanted to do everything I could to, ironically not have the cancer come back. So, I didn’t I didn’t have a problem with that, but I shouldn’t say but and it took me a long time to look at my scars on my chest. And it forced me to think about well, who do how does the breast define me? You know, as women. You know, my femininity, my sexuality, aesthetically, you know, you’re wearing clothes. So there is a sense, this was like a brief sense. But I know for some women, it’s a bigger sense, there’s a sense of loss there, which then sort of segues into like your, your loss of self. Like, this is who I was before, who I who am I now? And it forced me to? Well, I did it for I actually chose to just think about this, who, who am I at my core? Who do I want to be at my core? What is my core, because as you know, my mom was younger kids, you don’t have that I didn’t have that time, I didn’t really take that time. You know, I was, you know, put my, my son’s name in front, you know, Collins Mom, you know, you’re defined by other things. But you know, what defines me. And then, then I also had, like, the loss of being able to physically do the things I wanted to do. I stopped I was I loved running, loved, loved, loved, loved running, I just stopped running. Because my, I didn’t want to do any damage to my spine. Again, I know there’s women who have bone Mets, and they run in, and it works for them, which is I’m envious, but it wasn’t gonna work for me. So, I had to stop and I had to rethink, okay, how am I going to keep physically active because that’s important. And then, like the loss of future plans? We couldn’t plan you know, let’s take a trip to Europe next year with the kids? Well, that’s out of the question. We can’t plan that far ahead. And then there’s, there’s sort of the losses of you know, that nobody could see, like, like you mentioned earlier, if someone looks at me, they’re not going to know I have metastatic breast cancer. And that’s, that’s true. So so so many women, there’s losses that you don’t see that are you know that I’m camouflaging or I’m not talking about to certain people or maybe I you know, I had a bad day and I just I keep it to myself so and then on top of all of that, the last category a lot now I know that that is grieving. But when the big grief comes is you know, I’ve been here for 17 years is this what if this is like next year is 18? And what’s my time up and then I I can go down a rabbit hole kind of quickly, but I’ve learned how to pull myself out but it’s um, I see my kids get married, am I getting? Am I going to, you know, miss out? Are they going to have kids? Or, you know, what are you know, I’m not going to hear about their tennis game, or the walk they took or you know what happened at work today and I won’t be with my husband and I’ll miss out on you know, what he’s doing and sometimes I tease him I say you, you can’t you have to retire before I leave. So, we have time. But that’s when this that’s when for me. I get a huge sense of grief when I think about not being here and missing out on what’s going on with my kids and what’s going on with my husband and and that will actually I will feel emotionally that grief and then I also physically feel like I can if I’m if it’s a really bad day I will get lightheaded. I will get cold. I’ll physically feel cold. And there’s probably like a panic feeling that if I allow myself to get that far, but then I’ll pull out of it. out of habit. I use one of my father in law’s things that he told me he he’s unfortunately passed away but he was alive when I was I was diagnosed with metastatic cancer and he lived out here close to us and he said he looked me over I can still see his face he looked me right in the eye and he said and right now you’re here The boys are here Chris is here. You’re okay. And tomorrow you’re going to be okay so let’s just focus on this focus on that and so when I feel myself going down the rabbit hole I’m sorry I I remember those words and then that just pulls me back up because you know he he was a world war two veteran and he he had nine lives and he was very strong strong man that he went through some some horrific things. And so if I feel myself I can’t get out of it. If I’m down that deep I just think okay George Herrick I’m coming up I’m coming up you know to yes right now right in this moment I’m okay the kids are okay Chris is okay I’m here you know and then I start to look around Yeah, the house is a mess I don’t care but we have a house we have a car we have dogs I have you know my mom is still here my you know my siblings are still here my good friends and so I got run through this checklist and I actually touch each finger every time I say something and that usually will that will bring me back up and I’ll say all right, you know here we go. Let’s you know again taking stock Alright, what do you want to do next? Um, I feel like I’m rambling I’m sorry.
Victoria Volk 26:59
But as I wipe my tears
Anne Jacobs 27:02
Yeah, me too.
Victoria Volk 27:04
Thank you for sharing all of that.
Anne Jacobs 27:07
You’re welcome, I kind of feel like I’ve lost track of what the initial question was but oh the grief, yeah, it’s some you know, a lot of it’s just constant that some sometimes I’ll use the it’s like a picture in my mind if I’m walking on a lake that’s frozen over and the sometimes the ice is really thick to keep me from you know fall going down the rabbit hole sometimes it’s really thin and I can you know, I see that I see all that the what ifs you know what if the treatment stops working What if I don’t have any more options? You know, all that stuff? It’s right there I can see it. But I don’t allow right now I don’t allow myself to like fall through the ice because I probably at some point, I’m going to I don’t know that. But you know, I have stage four cancer. So, I hope I live to be you know what, there’s survivors out there who are 25 years out and they give me hope and I know that I give I’m 17 years out and I know I give women who are you know, less have less ears I give them hope so. I don’t know when my time is but I don’t want to fall down that I don’t want the ice to completely crack yet because I don’t it doesn’t have to crack yet. But with that said, all of that fear all of the what ifs it’s it’s always there. And then sometimes, you never know like a like a little drop in the bucket can overflow the bucket. And so, I have days like that as well. You know, some little thing can just be too much for me and I’ll completely crack and have a breakdown and I’m sobbing for 15 minutes, which I don’t mind anymore. My tears used to scare me because of the intensity. But now I know I just let it come out. It’s what do they call an ugly cry? I have you know I have those. But it’s I think for me dealing with the loss and the grief I’ve had to to reinvent myself and the lot you know, I have I guess I have these two categories, the losses. I can say okay, yeah, I couldn’t go back to work when our youngest was in first grade. But you know, for a year and a half I could work part time because I felt good enough. And I could do that or for you know, two years when I was on it. I felt good enough. I could volunteer for my kids lacrosse teams, you know, I could drive up to see our oldest in college and, you know, you know, spend a day with him. So, it was okay, I can’t do this. I can’t you know, I can’t run, but I can ride my bike and not in I can walk. Do I miss running? Yes. Do I watch other people run? And just go, oh, I wish that was me. Absolutely. But then the next thought is, oh, yeah, but I’m here and I can walk, and I can ride my bike. Because someday I won’t be able to. So I replace a loss, I try to replace the loss with something else. And that’s kind of what kept me going. I tried knitting for a while, when some of my treatments kept me in the chair for you know, six hours. And I have, if anyone needs 10, half finished scarves, I have them for you. So I would you know, I tried different things. when my kids were playing lacrosse, I took you know, I was on the field, and I took pictures of the team and then playing and I love doing that, you know. So try to find something. And I try to do this every day, I try to you know, find something that brings me a little bit of joy. It can be anything, it could be I’m out on a walk well, I’m always happy to be out on a walk. But I could see a rock that’s in the shape of a heart. Or if I’m on Facebook, and there’s, you know, there’s a gal I know who she posts pictures of nature, she was two of them. They just post these beautiful pictures of you know, places that maybe I can’t go And I’ll just think oh my god, that’s just the pictures beautiful. And that brings me happiness. So I’ve learned to find the little positive, positive things or joy, even in just the smallest. That’s not to say I don’t have my bad days. That’s not to say, I don’t there are days when I wake up and go this cancer, you know, expletive. And I get mad at it. And it’s like an unwanted houseguests. It’s never gone away and it’s gonna rear ugly head.
Victoria Volk 32:22
You know what, you don’t need my permission to cuss on here because I felt you’ve earned that right? I’ll check bar, I’ll check. I’ll gladly check that box. That it’s explicit, because I’ll say fuck cancer right along with you because it took my dad and I’m just like go somewhere else.
Anne Jacobs 32:48
Cancer has taken too many people I know.
Victoria Volk 32:51
That just might be the title of this podcast episode. Maybe I don’t know if I can do that, but I’m going to try, just for you. Just for you. I want I want to make a distinction on something you said because you mentioned a phrase that we say in grief recovery, and it’s replacing the loss because that’s, that’s, that’s a myth that we are. That’s a myth of grief. It’s one of the six myths of grief and that we learn to do that. But you’re not doing that you’re not replacing a loss. No, you’re you’re, you’re looking for an experience that of something you can do. And I just want to make that distinction because replacing the loss is something that makes you feel better for what you’re doing that to make yourself feel better. And for you, it’s what your body is capable of doing that day. So that’s the difference I want to share but your losses they that is grief because grief is by definition from the grief recovery Institute, a changing or and a familiar pattern of behavior. It’s anything we wish would have been different better or more. And it’s a loss of hopes, dreams and expectations. If there is any story that is the epitome of grief. It is your diagnosis and prognosis. and everything in between. From that bookend to the other. One back end to the other and what has been some of the unhelpful and hurtful things that you’ve heard along the way.
Anne Jacobs 34:30
It happened early on in mostly with with people who felt like they needed to say something they probably would have just been better off. Not to say anything or not approached me my kids were in elementary and middle school. So I was at school. You know your your kids are in school so you’re around more people now. You know they’re grown to her out working once you know finishing up college so you’re not around other parents as much So they would say, they didn’t understand the metastatic part of it, you know, everyone understands, oh, you’re going through cancer treatment in the beginning, and then your hair grows back and you start to become, you know, normal looking. And so then people adjust to that and say, Oh, she’s getting better. But then when you get the metastatic like you said, I don’t look like I have cancer. I mean, there’s days I do, but most days, if someone looked at me, they wouldn’t know. So they would say things like, Oh, you know, you’ll get over this soon, or you look great, you must be feeling really well. Or if I had to cancel an appointment, they’d get up set. And say, I’m sorry, I just can’t make it. I’m not feeling great today. So there’s a huge disconnect, because, well, you look good. So therefore you should feel good. So I went through that a lot. I learned early on how to deflect I had a sense of, Okay, here comes, here comes a mom that I don’t want to talk to she’s she’s just is coming up to me, because maybe she feels like she should. Because she caught my eye and she doesn’t know what else to do. She would start to say something. And if I felt uncomfortable, I would just kind of interrupt her and say, Oh, you know, how’s your kid doing? Or, you know, how’s baseball going? Or, you know, I would change the subject abruptly, just because I didn’t want to hear anything else that that person wanted to say, you know, I’ve, I’ve had some people say, you know, well, everybody can die. You can get hit by a bus tomorrow.
Victoria Volk 36:49
Are you kidding me?
Anne Jacobs 36:51
No. And I say well, and I never know what now I know. Like, what I would say say Well, you know what, I’m actually playing in the freeway.
Victoria Volk 37:02
Exactly right.
Anne Jacobs 37:04
You’re off on the sidewalk. You’re just hoping some random freak accident doesn’t happen. But like, I’m literally I’m in the road. But yeah, people have said that. And some, some people forget which, you know, they’re good, good people, and they’ll say, you know, are you done with treatment? And I’ll say no, I’m I’m never going to be done with treatment. I’ll be done with treatment when I’m dead. Oh, that may sound like kind of a harsh thing. But you know, I don’t say it in anger. I tried it, you know, um, I tried to cover it up with like a smile or you know, ease him into it, but still make my point. Because I understand like, who the neighbor five Doors Down isn’t gonna that’s not their job to keep track of, you know, what I’m doing everyone’s lives are so busy. So, people just forget. And so sometimes, you know, sometimes I’m very Matter of fact about that other times, I’ll say, No, I’m still on treatment, I’ll always be on treatment because and then I’ll explain it I have cancer that’s in my bones and in my, you know, long it’s never going to go away. And I just hope that I’m stable for as long as possible. You know, it just depends on the conversation of how how I feel about the person that my energy level if I want to talk about it. Because there are times when someone will say something really stupid, and I’ll take that time to educate them. Not that they’re going to remember in a week, but you know, maybe something resonates but there’s there’s a whole list of of comments that that that people say cuz they they just don’t know what to say. And sometimes it’s just okay did that, you know, they say How you doing? And I’ll say, yeah, I’m pretty good treatments going well, and all they would have to say is, you know, great. Well, I you know, I hope it’s working. The comments of Oh, but you look so good. Those are like yeah, yeah, yeah, I know, I know. Don’t focus on the exterior but ask about the interior. Like, how’s your day going so far today? Or if it’s if it’s a relationship where they can ask Is there anything you need? I’m not good at asking for help. And I’ll segue a little bit when I was first diagnosed, and my mom came out. My sister is out for a little bit and my mom came out for a while. My friends are thrilled that my mom was here because she answered the phone. Well doesn’t need anything she say yes, I’m you know, going to target. Yes, we need a new twin mattress pad needs some orange juice, if she would, and they were Wow, your mom’s so great, she’s you know, she’s letting this help you. Um, so then so then we just have like a here, here’s my debit card, just give it to them or, you know, give them cash when they get back, but it kind of goes back into when people say silly stuff. When somebody isn’t this is human nature, I think, you know, when someone’s sick, everybody, they rally around, which is humbling and overwhelming and just full of love. And then when the crisis goes away, then you know, people go on with their lives, some people stay, some people leave new people come in. And that’s, it’s kind of an app, I know, I’ve gone off on a different little topic, but that kind of is part of the, when people say silly stuff or stuff that hurts me, you realize, okay, well, I volunteered with this person, they were really nice. We were worked really well together. But now I’m in a different place. And she doesn’t want to be in my life, which is okay. And you know, she goes off and I and you could say there’s a void there. But usually somebody else will come in like, there’s a gal who knows and I was in my kids were in preschool, there’s another mom and she knocked on my door and she said, I’m doing your laundry. She came in, she did my laundry, folded it left and I’ve I saw her all the time in preschool, but I never saw her after that. And it was just one of those she’s you’d sit on the couch do not move, because she knew I would want to get up and help. She came in and left. And that’s just it was just the best thing for me that day. And so, I’ve, I’ve learned that I don’t have too many people in my life anymore that say the stupid stuff. So that’s kind of a blessing. And any if anyone says, if only my friends say, you know, you look pretty good. I know it’s coming from their heart because they’ve been through this journey with me, they know me at my worst. So that means something different than the superficial of, oh, you’re still in treatment? Well, you don’t look like it. You know, I know they’re trying to be encouraging but after a while, it’s just like, you know, heavy breath heavy sigh Okay, let’s let’s move on to talk about something else. Because they just, they don’t get it and I don’t want them to get it.
Victoria Volk 42:35
That’s like definitely having to discern and cherry pick. And it’s like this dance, a daily dance, I imagine with all the relationships. And if you think about, especially when your kids were younger, and you’re out and about and you’re doing things and lifeboat life was going on, and life was happening all the time. I can’t imagine like I’ve never taken count. But when I do go out and about in a mountain in the world, it’s like how many connections and interactions do we have in a single day. And I imagine that can get pretty exhausting. If every person is asking you or, or saying something insensitive and not really thinking before they’re speaking and you must get home at the end of the day sometimes and just be like, oh, gosh, like people exhaust me, like, I just want to stay home. Like it’s just easier to stay home. So how do you not isolate yourself and discern? How have you discern? Well, I guess you kind of answered that, like how you kind of figured out basically the people that have stuck around beside you since the very beginning? Is are the people that you lean on today? Is that true?
Anne Jacobs 43:48
Yeah, you know, last year, most of them were all in isolation COVID and the pandemic and for how this is good or bad. But for me, my my life interactions didn’t really change a whole lot because I’ve always had you know, I’ve always had to be careful about my immune system. And so I developed habits you know, before the pandemic of learning how to be okay in in the house by myself for extended, you know, my husband, he gets up and goes to work every day every day. It’s just amazing and but it’s for his mental health too. He couldn’t really work well from home. So his office is close by and. And then when our youngest went off to college, I’m here with our dogs. So I have to find ways to not feel too isolated. And there. There was a time when my immune system was super, super low. And it was like for everybody else last year with the pandemic of oh my gosh, we can’t go anywhere. But this was for me it was before the pandemic and I said ask my husband Can I just I’m going to bring my laptop and just sit in your back room and you know work on my laptop for like a couple hours because I can’t I can’t stand being home by myself and then some days it during that time and I wasn’t able to get out and walk he’d come home and be like Labrador talk Oh, we’ll go in the car for a ride you know roll the window down and and you know maybe we’d go to have it burger and he could you know he’d walk in and get his dinner because I couldn’t I couldn’t be around a lot of people so it was again I go back to you know, just finding joy something positive in the day that I can do where I you know, feel accomplished even though I can’t see people but with that, you know, I you know, I have a friend who I can just call and just start talking have a few friends like that and just start talking and you know, we already know what we’re talking about. And and that’s, that’s really helpful.
Victoria Volk 46:09
You gave a wonderful piece of advice that was shared with you about having today and you know, just focus on that but what is Is there any other pieces of advice that you’ve received over the years that maybe would be helpful to someone else who’s maybe been recently diagnosed or just for humanity in general?
Anne Jacobs 46:33
Remember to breathe that sounds like a very simple thing. But when when I was diagnosed with the metastatic cancer and I lost my ability to add just like okay, we’re gonna attack this what do we do so I I just remember I had to just take some time and actually feel myself breathe take those big deep breaths it was grounding in it you know kind of brought me back to center and it sounds you know really basic and simple but it is because I would find myself tensing up and taking you know, shorter breaths when I would become anxious so it just has a natural calming effect it did for me and my body.
Victoria Volk 47:24
I was just gonna ask Is that something you still practice and and what are some other things that you bring into your daily life that keep you grounded and have sustained you what do you what do you Yeah, as far as like you mentioned the breathing Do you do meditation? Is there anything else you’ve incorporated into your day?
Anne Jacobs 47:49
Yeah, I do the breathing. I usually do it in the morning when I’m I get up and I’ll make a smoothie and I take my supplements and I’m just sitting in I’ll just breathe just to start the morning off. I also listened to affirmation visualization used to be a CD but now it’s on my phone. I listened to it so much I can actually can just recite it in my mind and if that helps me kind of stay grounded to the other thing is that you know I’ll text or talk with friends and sometimes I’ll get distracted you know by whatever conversation we’re having and and that’s a good thing. I do stretches though that’s like for my more of my emotional kind of centering for my physical I do you know, like I said, I walk I’ve worked up to being able to do squats because one of the treatments might left my left leg muscle super super weak to where I couldn’t bend down to pick anything up. I fell over at the Rite Aid let’s trying to get something off the bottom shelf with that oh my god, how am I going to get back up so I’ve worked up to where now I can do squats with 10 pound weights. And it’s taken me I think, three years to get to this point. Weight routine with my arms. And then when I feel you know, good enough, I can be out in the backyard doing yard work. So that kind of helps me keep my physical strength up the affirmations, visualizations, it it really helps. I think, I don’t know if it’s your subconscious or it’s maybe like a little tape that’s, that’s running in the back of my mind. It gives me strength because I don’t know if it’s a false sense of security, which I don’t think it is because I believe that our thoughts affect you know, our emotions and our our approach in life and our physical well being as well. But it gives me the sense that I have control. I put that control in quotes because affirmation visualization is about my body in my immune system attacking the cancer and washing it away. It’s just it’s a really a there’s so many out there and I found one that spoke to me, that’s very, very helpful. The other thing and might sound kind of odd and I don’t do this too often as I I’ll sit down and I’ll, I’ll write letters I just wrote along with my mom. And whether it’s a quick note, or, you know, a long letter, I just, I like the feeling of the pen to paper. And I always have, but that’s something that kind of came back to me. It’s like the flowing of the words out onto the paper. And that’s different. For me, that’s different than just typing in a journal. I don’t do a lot of journaling. I know a lot of people do, because a lot of times I’m just the tapes are running in my head anyway, and I talking about it, and I don’t want to like write it down, I’ll write important things down. But the letter writing is helpful for some reason as well.
Victoria Volk 51:02
Have you written letters to the boys?
Anne Jacobs 51:05
That I have, I have written them, but not a lot for a while I have not written them about the cancer. But one of my sons asked me is if I would keep track, like when I get a memory from, you know, growing up or something, you know, college, or he says, will you write that down. So, I haven’t been very good about it for the last year and a half. But I have I have done that writing the letters to my boys is actually something that is on, it’s been on my mind. Because I know, when you read something, it’s on paper, it’s different than when someone tells you, I tell them, I tell all three of them. You guys are amazing. I’m humbled to be your mom; I don’t know why I got chosen. Because I just think the world of them, and I love them fiercely. And they know that but I also know that saying that, which is good to hear is different than having this tangible piece of paper with your mom’s handwriting on it. You know, it’s from her I had you know, I, I have a whole box of my mom’s letters and cards for you know, from the last third forever. And so when you open that card, and you see her handwriting, it’s that’s her, you know, I hear her words too, which are, you know, amazing. But here’s this tangible piece of her right there. So, you know, it’s, it’s a great question, because I’ve been thinking about that. I thought about it all January, January is kind of a little crazy month for me, but it’s still on my mind to do so. It’s really interesting. You ask that question. It was intuitively known.
Victoria Volk 52:46
When speaking of intuition, and I’ll just say this, too, that it’s something you can do and just put in an envelope and save for them.
Anne Jacobs 52:54
Yes
Victoria Volk 52:55
Give them later. You know, it’s not something you have to give right away after you write it. But speaking of intuition, I just Well, first of all, I want to just mention something with the breathing. I left I listened to a podcast episode with Lewis Howes, I think, and I’ll put it in the show notes as well. But he interviewed James Nester who wrote the book, breath. And he talks a lot about how the impact of our breath and really if and how this, the diaphragm is really like the second heart and you talk in just, it’s such a good episode. I’ve been so much more conscious of my breath. And in so many of us breathe through our mouths, which is horrible, horrible for us. I highly recommend listening to that episode. So I just wanted to mention that also, too. You mentioned about the visualization of feeling your body being like washed away like this cancer being washed away. And I thought of Lou Louise Hay, who wrote the book, you can heal your life and she talk a lot about like her she actually healed herself of her. It was a cancer of a reproductive organs, I can’t remember which is uterine or, or which but talk that made me think of that. But she talked about visualization of it literally being washed away. And so I want to talk about intuition piece because intuition played a huge role. In our own email correspondence. You mentioned your intuition, how you fired your first oncologist, and you just had this instinct within you. And so, I mean, it obviously served you well, then. But how? And you mentioned even the mind body connection, which I just I love that as well. So can you speak just a little bit to intuition and how that has played a role and how you’ve navigated this?
Anne Jacobs 54:59
So I’ve I’ve had instances of this intuition before cancer and the first one I had I think was I don’t know how old I was like I guess we could figure it figure it out but my my best friend growing up she she called she lived next door and she called in an answer the phone Of course it’s the rotary phone cord in one phone in the house and she said Guess what? And in my mind I said oh my gosh you know her brother and his wife you know Jan they’re gonna have a baby and I didn’t want to spoil it so I said what she’s Jan’s pregnant and I said oh my gosh, that’s great. And I thought well that was weird. And so I’ve had things like that happen throughout my life you know, I have a dream I had a dream about one of my nieces z years ago and she was on stage giving a speech and I can’t remember the whole thing so but I I don’t remember if I talked to her or I sent a text or a comment I somehow I contacted my brother and my sister in law and her you know, about her being strong and she can do this and and they said, well, there was some core there was some parallel activity happening at there and they’re there they don’t live near us they live states away and so that okay, well that’s that’s why I’ve had these little things. So I’ve learned to like tentatively, to sort of trust that voice in my head. But now cancer came what you’re what you’re talking about the way I got assigned, I just got assigned an oncologist and so my husband and I went and saw him and he was he did nothing wrong he In other words, he did everything right. He explained everything made sure I understood he wrote pictures on paper when I you know, he was great, he was kind he was compassionate. And during the appointment, my heart started beating super fast. I started sweating I couldn’t wait to get out of the room. And when we got out of the building, at the time, I really really swore and I said to my husband, there’s no effing way I’m going back to him I have to get a new oncologist and my husband who’s very he’s in tune with a lot you know medical stuff even though he’s not in the medical field He’s like, Oh my gosh, why this guy was great. I said, I don’t know. I just can’t have him so and i think i think i wrote in the email it was that mama bear feeling that you would feel for your kids where you will walk through fire for them that’s what I was feeling about myself that was brand new. I’ve never felt that before. So I had to I had to pursue it I had to get a new oncologist at the time there was only one Oncology Group that I had access to and I called them and said I need a new doctor and they were just oh my gosh what happened you know and finally I talked to however many people at the group and I just said Look, just label me the crazy cancer lady I’m really sorry but I just needed a different doctor and so the oncologist that they gave me to I just attribute him to saving my life early on because we work so well together and he he he worked really well with my husband he’s actually disappointed when my husband was the doctor appointments but I learned from him and he was the first on call just as younger and and my second one was he’s a little older will older than me I think but he taught me about myself and cancer he taught me how to approach cancer he taught me and this was just through interaction you know what questions to ask what I needed to be focused on what you know my my numbers were going up they weren’t going up that too far so we didn’t have to change treatment if they went up to a certain level then we would so I learned all of this stuff. And I just have to assume that I would have not learned that with the other one. So I trusted my intuition there and that has that kind of put the big stamp on my intuition so now even my husband like if I have I said honey this I just think we should do it this way. How’s it okay you know, I get it. And when you talked about the the mind body connection as well, you know, growing up I was always very active outside and growing up in Michigan, we had two acres of land our neighbors had three and four and five, no fences and we were just you just go out and play. I play soccer in high school. I’ve always understood. I’ve had this connection with my body like when it does this, then it means that I had to relearn that, specifically when it came to the cancer. But I’ve always, I’ve always had this sort of Mind Body connection. And I think it’s really important. Regardless, if you have, you know, a disease or not, I just think it serves you really well, if you can understand what’s happening, you know, with your body, like, okay, someone’s talking to me about something I feel really insecure about. And now, you know, my heart is beating 100 miles an hour, you know, why is that? What can I do to calm down, and those kinds of things happen to everybody throughout life every day. So the, I think the earlier you start with that, and it’s never too late. And it does take time. That’s why the breathing helps, it does take time to just like, Ha, sit down, what’s going on, you know, let’s tune in. And then I think that gives you an advantage to then serve yourself better than you might have, if you if you had something stuck in my head from something earlier. I don’t know if I said I think maybe it’s something you said. And I was talking about, you know, when people would come up and, and ask me questions, and I have a dear friend who she taught me it was okay to set boundaries, when you feel uncomfortable, or when it may not be socially acceptable. And she’s just a she’s an amazing woman. And she would say, yeah, we, they go to see your daughter play a game and depending on how they’re they just took care of themselves, maybe they sit, they didn’t sit with everybody that day, they’d sit farther away for and I would just, she taught me It’s okay to say no, she taught me It’s okay to take care of yourself. Even you know, even with family members that you got to pay attention to what’s happening inside you, and then make a decision of what how you want to move forward. So those things that those types of interactions I’ve had with people in friends have have balls bolstered Sorry, my confidence in my intuition in that mind body connection to say, yes, it is okay. And I’ve learned also over the years, when I haven’t listened to my intuition, then I think, ah, shoot, I should have listened. So it’s a try, you know, for me, it was a trial by error as well, you know, like, Okay, I get it now when the, the thought or the feeling comes up, I just go with it. Now talk about it to who, you know, if it’s my oncologist, like I did that. And the most recent one was when I, I started this new cancer drug, and it’s, I’m also taking a an infusion. For me, it’s immunoglobulin. But it’s an infusion, it’s called IV big and it’s to bolster my immune system, and I was getting this new drug and that one, either the same week or a week apart, and I was miserable, just miserable. And I said, You know, I can’t do this, can we? Can we, like, separate them by two weeks, just to give my body a chance to, you know, catch up, and that’s made a world of difference now. Like, I’m fine, after each no more, you know, relatively fine. After each treatment. I don’t feel like I’ve been hit by a two by four. But that was from, you know, years of listening to my, the thought comes up. Oh, okay. I’m gonna pay attention to that. That Mind Body connection of you going through treatment? How do you feel? And again, this doesn’t have to be treatment? It could be, you know, you have to give a presentation somewhere. Well, how, you know, I get stressed out, what can I do to calm myself down? So if you take that time to learn about yourself, I think it really serves you well, whether you have cancer or not, but I do start with the breathing.
Victoria Volk 1:04:11
I love all of that. All of it. All of it. All of it. And I know I briefly mentioned to you or email about how I’m a Reiki Master?
Anne Jacobs 1:04:19
Yeah.
Victoria Volk 1:04:20
The energy healing work and I’m just curious. Have you ever had a Reiki session?
Anne Jacobs 1:04:27
I have not. There were years ago, I was going to and then probably something. I’m sure it was, you know, something happened with me, and I couldn’t. I couldn’t go through with it. And then, um, you know, when you mentioned I thought, oh, I should I should look into that I have. I remember at the time I was asking around and I finally found someone that was recommended and I felt comfortable with but so I’ll have to start that search over but I haven’t,
Victoria Volk 1:04:59
They don’t, they don’t, I’m right here. You got a hook up.
Anne Jacobs 1:05:08
Yeah, yeah I will take advantage of it yes after after the podcast but yeah it’s it’s kind of it’s come back around and when I read that on your in the email, oh I should revisit that.
Victoria Volk 1:05:23
I yeah I bring that up because what you all shared and because I didn’t understand that concept of how our body speaks right until I made the first of all in grief recovery after going through grief recovery I made the connection of how grief was manifesting in my body and in my life and tying that to grief that’s definitely what is going on with us internally emotionally and like you said our thoughts is reflected within our bodies and our body speaks to us it’s just we do things to band aid and feel better we might drink or we might do other things that just kind of enable us to numb out and that only obviously does more damage and then we have shame and and so compounds right and so I love that you brought that up and I just want to bring just highlight that in that it again Why does it take a diagnosis for us to make that connection? So, this leads me to the question of Have you ever found yourself just incredibly frustrated by people maybe close to you or in your life or maybe acquaintances or people that kind of maybe complain about this that or the other thing or or aren’t taking care of themselves? That ever like have you ever found yourself like just really just frustrated with someone who you know who just isn’t waking up in their own life?
Anne Jacobs 1:07:01
Yes, um it brings to mind this is years ago because I think both I think my son and my youngest was in middle school and the school is that the one of the teachers had breast cancer um, you know, in the stage two so she went through treatment she was doing fine thankfully. But she had a mom in her class who was diagnosed with breast cancer and you know and you want to talk to her it’s like yes cuz probably as you can tell, just talk and talk and talk to anybody but so I talked with her and she had two little kids one was in I can’t meet you’ll say I don’t know first or second grade one was in kindergarten and she was just diagnosed I don’t think it was metastatic could have been but she was saying she did not want to see a can sometimes are called conventional oncologist she was seeing a just it may be integrative which is great because I just I see an integrative nurse practitioner but this was someone in the Bay Area who was it was more of the natural approach and when she talked to me about her cancer like oh, I said you I had to be very careful because I wanted to just scream at her oh my god are you crazy? You have to you have to start regular treatment. This your cancer is not getting any better. It’s getting worse. I mean it was my head was screaming you have these two beautiful kids you got to do everything you possibly can to stay around like what the fuck but I could that’s what was going on in my head but I couldn’t and outwardly I was like okay, you know, well you might consider I really think you know your cancers progressing faster than you might believe I at least go talk to the conventional oncologist see what they have to say. And and she did she refused. I thought okay, I I talked to her a couple more times, and then I didn’t see her anymore and I actually didn’t I did not want to know selfishly I just did not want to know what happened I could have asked the teacher she would have told me because I was you know on good terms with her and I but I just could not handle the if, if she died I couldn’t handle it. For me selfishly, I just didn’t want to have that knowledge because in my mind she wasn’t in again. This is just this is me. She was doing what she believed was right. I was like, oh my god, you’re not doing everything possible. You can’t just stay around, you’re not exactly exhausting all of your, your resources. So that is very frustrating for me.
Victoria Volk 1:10:08
I just want to make this key distinction to I just want to bring up for anyone listening who might be in that position. Even if you don’t pursue that treatment, I feel like I have to say this. So, I’m going to say it, even if you do not pursue that treatment, it’s coming from it with information. It’s been fully informed and then having the confidence that you made the right decision.
Anne Jacobs 1:10:34
Yes. Yeah. 1,000% knowledge is power. You You are You are so so so so right. Just absolutely. And that’s, I mean, that’s how I that’s just given me whether it’s cancer or any other situation, give me all the information so I can process it and fully understand it to my capability, and then I’ll know how to move forward that that’s kind of like just a personality trait of mine.
Victoria Volk 1:11:05
Mine, too. Yeah. It’s how I’m wired. We could talk about that’s a whole another topic. Yeah, I’m going through a certification program right now. That’s all about strengths and, and values and how we show up in the world and how we’re wired. And really good. Yes, input is one of my top five strengths. Yeah, input. So I need all the information. That’s how I, that’s the fuel in my life. But yeah,
Anne Jacobs 1:11:30
I might have to talk to you about that later.
Victoria Volk 1:11:33
Yeah, I would love to.
Anne Jacobs 1:11:39
That that’s for as far as cancer goes. That to me is is very, very frustrating. To you, to your point, exactly. Just get all the information and then make your decision. I also my, I’ve got two other frustrations. One is that the I don’t know if you want to come celebrities, but people who are out there in the spotlight, and they’re, they get diagnosed with cancer, whether it’s metastatic or stage, you know, one through three, and they they come out, which I think is great. And they say I have breast cancer; they make it look so easy. Compared to the realities of what, and I know, I’m speaking for 1000s of women, because I’m on a discussion board. And whenever something like this happens, everyone just chimes in, they just make it look easy. And then they also have all these resources available to them that the common person doesn’t have that doesn’t get acknowledged. And so that might add to this sense of Oh, she’s breast cancer, but it’s going to be fine. Because, you know, there’s movie star, the celebrity or this other person in the spotlight, they got it and they did okay, I know that it’s very frustrating, frustrating. For me, it’s also frustrating for many others, because whether they go through some really hard times, they don’t really talk about it. It doesn’t, you know, there’s no commonality. It’s like, oh, they’re they’re off here and another sphere. And then here we are left wondering, you know, do my kids have clean underwear today? Can’t remember if, like, if I did a lot, you know, stuff to that level.
Victoria Volk 1:13:17
Oh, wait, did the maid do the laundry?
Anne Jacobs 1:13:20
Right? Yeah
Victoria Volk 1:13:21
I think, too. And I’ve actually interviewed an actress on my podcast, that’s very down to earth. I love talking with her. But I think it’s acknowledging, I think if they would acknowledge the knowledge, make all the difference.
Anne Jacobs 1:13:40
That’s Yes. Thank you for saying that. That’s, that’s it? Yep. It would make all the difference. It really would. And then the other. The other one is, tragically when somebody dies of metastatic breast cancer. It’s very, it’s very rare. That the Artic in, and again, this is someone who’s in the public eye. It’s very rare that the article will say, she died of metastatic breast cancer. They’ll say it’ll say she died of breast cancer. But that’s not the whole story. Because you you don’t die from stage one, two and three, there may be under you know, there may be a coma. morbidities I think is the word. But if you’re going to die of breast cancer, true, it’s going to be because you’re stage four. So, there’s this balance of respecting the whoever is in the spotlight, their family and the privacy because it’s just it’s a horrific thing in balance that with the edge if you can educate the public more about that it was metastatic and how long did she live with the metastatic because Women lived less than five. And you know, like I said, there’s women who are 25 out. And so you get a more realistic picture. And I’ve had discussions, you know, I for me, if I were in the spotlight, it would be Yeah, put it all out there, let everybody know what I went through so that other people can understand. But I also respect that some somebody’s family doesn’t want to do that, because of the privacy, I totally get that it’s like, but though those three things are, those are my frustrations. And I have the last two I can’t really do anything about the first one is I can allow myself how much exposure Do I have to someone who, who isn’t getting the whole picture who’s just doing a very narrow? And usually, it’s not it’s it’s a it’s a narrow focus? It’s the natural the natural way, which there’s nothing I mean, there’s nothing wrong with it. And I do I mean; I take supplements and I do conventional treatment. And I’m, you know, talking with the integrated nurse practitioner. So like you said, it’s trying to get the whole picture so I can work with my medical team to make the best decision for me, but I can, I can affect that the other two, I can’t really do any of those are just like peripheral frustrations. But the one that’s sort of speaks to my heart is if you’re not doing if you’re just focused on the natural stuff, because there are there’s me, I’m in another discussion board where the focus is more of the integrative more natural approach. And I’m, I joined that because I wanted to be educated because some of these women are, they are just so full of knowledge. I mean, it’s it’s an amazing amount of research and that they do and so I wanted to tap tap into that, and I was grateful that I could join. And I realized that there are some women who say, well, I’ve I’ve tried the natural path for a couple years and now my whole body’s metastatic and like Oh, I can’t read this. No, because that’s an it’s their choice. And I don’t I’m not dismissive of it. I just know how it affects me it just it breaks my heart. Because I believe there’s a bound for me anyway, I know there’s a balance, but it’s not for everybody. So I’ve chosen when I when I come across those discussions, many times I can’t I just keep scrolling through the next one. I can’t speak to any of that. Because it hurts me too much. I think probably because that’s I mean, that’s my fear. Deep down is I doing enough to keep the cancer at bay. But that comes full circle back to what you said, but I’m always trying to get as much knowledge as I can to make the best decision I can.
Victoria Volk 1:18:01
In the beginning, have you did you find yourself asking yourself why me?
Anne Jacobs 1:18:07
Yeah, yeah.
Victoria Volk 1:18:09
Did you have a family history of breast cancer?
Anne Jacobs 1:18:11
No, no and I actually got genetic testing done I don’t have any markers for any cancer and I got the genetic testing done probably Oh gosh, I lose track of time maybe six years ago seven years ago so it wasn’t right away at the time you know, I already had metastatic so what difference would it make but I talked with my oncologist I have now and I said but what about my sons and my nieces and nephews Wouldn’t that be good information? She said absolutely so yeah, I have no markers my my mom’s mom died of cancer but I think it was like stomach cancer and her one of my mom’s cousins died of cancer but it wasn’t breast cancer. So and there’s but for my family tree there’s no direct lineage that you know that I know of you know going back three generations that there’s no there’s no cancer so yeah, I did tape you know what what is going on and you know, I it’s kind of like why am I still here? I you know, I don’t know I can guess my guess would be that I didn’t handle stress the most appropriate way throughout my life maybe that built up you know, maybe that affected my immune system broke it down so that it couldn’t attack the cancer and it just started growing because you know, there’s I do believe that everybody has cancer cells just kind of hanging out in their body but our immune system you know, gets rid of them. So for me, I believe is a break Just intellectually I don’t know how else to go with it. I think it was a breakdown in in my immune system and my next thought is okay well why would that occur because I ate pretty healthy you know; I exercise but I really don’t think I handled stress or things that really bothered me very well. I think I pushed it down too far. That’s the only thing we can come up with.
Victoria Volk 1:20:27
Can I ask a question?
Anne Jacobs 1:20:29
Sure.
Victoria Volk 1:20:30
How old were you when you were diagnosed with the initially with breast cancer?
Anne Jacobs 1:20:35
42
Victoria Volk 1:20:38
So had you had any traumatic experiences? Any trauma in your life? grief experiences? I imagine because I’m going to be 42 very soon. And I feel like I’ve lived three lifetimes in some ways.
Anne Jacobs 1:21:02
Yeah.
Victoria Volk 1:21:03
Are you open to sharing?
Anne Jacobs 1:21:06
Um, yeah, I am to a certain extent but yeah, in answer your question, yes. So one of the bigger ones which turned out just wonderfully was my husband and I were married and then we got a divorce and then got remarried. And that was just an awful awful time for me. Um, but we you know, we reconnected, and we got remarried and it’s he’s like he’s just the absolute best i can’t i mean i i wouldn’t I wouldn’t I don’t think I’d be doing as well as I am if it weren’t for him. He’s allowed me to he provides for us so well he provides for the boys he’s just an amazing dad. He takes care of me better than I mean he’s such a wonderful man. We just couldn’t get it together the first time we got it together for you Good for the second but that that was an awful time for me. I actually left California and moved back to Michigan I didn’t know what I was like you know I just thought alright i’m i’m you know going back home so to speak lived with my mom for a while and and during a conversation that Chris and I were having probably about five months after I’d been there and he said you know I want you to come back so eventually you know without going through all the details yes I came back we got remarried and and so we’re living normal marriage life with you know all of its ups and downs. You know, just because we decided to get married doesn’t mean remarried that hasn’t been a cakewalk but you know life life’s just hard so you can make this commitment to something you know, we made this commitment and you know, especially with with calling being a little guy my stepson I said you know, if if I’m going back I’m not leaving because I can’t do this to Collin he’s just he’s like two years old. And so we’ve you know, we’ve made a pretty good life and and that’s a whole nother topic, but so that was stressful. Um, you know, growing up, everybody has, you know, family stuff. And I just don’t think I don’t think I was really understood how to handle the stresses in life when you’re growing up and anxieties you have as a teenager and you know, then going off to college, and there’s times I think I had guardian angels, like literally picking me there must have been 10 of them picking up me up on my shoulders and saying, Let’s leave this situation and we’ll just go over here for a little while. So there’s many times when I look back, and I didn’t follow my instinct, or I didn’t follow my heart during those times when I think okay, maybe I should have and I don’t mean this in a Pollyanna way. But then I don’t think I would be married I would I don’t I wouldn’t have come out to California would have met Chris, we wouldn’t have gone through our stuff. I wouldn’t have these, you know, this wonderful family by making other choices so but within the everyday life, I believe I just didn’t handle the stress appropriately for my body. I just kept pushing it down, pushing it down, pushing it down, and then it would come It would come back up maybe in inappropriate ways maybe I would burst into tears when the situation didn’t weren’t, you know, really warranted, but it was what was happening with me. That’s the only. I mean, that’s the only thing I can think of other than if you want to think of was exposed to some weird chemical or, you know, we didn’t live we lived, you know, pretty clean life. You know, college, you I drank like everybody graduate, you know, I didn’t, I didn’t drink a lot because I mentioned that because they say, you know, alcohol consumption is one of the things you know, you need that can contribute to breast cancer. But, you know, I, when I got the metastatic diagnosis, I stopped drinking completely. Maybe I have three glasses or four glasses of wine a year. But so that’s why I reflect upon how did I handle the stressful situations in my life? Not very well. gracefully. I try to do a better job now. You know, sometimes I don’t. But when I don’t that means it signals to me that I’m need to take more time to figure out well, what’s really happening, you know, within me, because I do have to say that there is a certain part of me that, you know, takes it for granted that I’m going to like every you know, everybody, you know, before I had cancer, I just took it for granted. I was gonna wake up the next morning, and I can to a certain extent, but they’re just some days I just say, all right, I can’t it’s not, I’m not trying not to think about it, and just, you know, pretend I don’t have it. But I can’t do that very often. Because that’s like I mentioned earlier, it’s just unwanted houseguests that’s here. And I have to learn how to live with it. So if I ignore it for too long, it doesn’t serve me. Well. I did, I did go through counseling. When I was in my 20s. And I’ll never forget, you know, we were talking about the mind body connection, I was sitting, it was group counseling. And then you’d meet, you know, different timing, meeting one on one with the counselor during this group counseling. Someone was speaking. And I remember getting very agitated. I can’t remember what the topic was. I had this thing on my chin like it, it just like, Oh, my skin just opened up. It was like a boil almost that appeared within a half hour. Because whatever’s being said, in the group, I wasn’t. I was afraid to, to, to share. And so because I didn’t like let it out of my body with the words, it was coming out in this boil on my chin. That had never happened before. And I didn’t take a clue from that, like, Oh, you know, a big enough clue. I don’t think like, it wasn’t a big enough moment to say, Oh my gosh, you know, I have to think about what’s happening with me emotionally, my thoughts and how I’m handling all this stuff. But that I still think of that today actually can I can still feel it happening and looking in the mirror going and it was ugly. Looking back on that reflecting back. Yes, I was not handling whatever was upsetting me appropriately. So my body was doing it, you know, speaking out about it. So my body did it for me. And I think that and there’s there’s one other thing that happened, I can’t remember but so hindsight, of course, 2020 I just have to believe that I wasn’t handling the stresses in my life appropriately to when I say properly, I mean to like resolve them, get them out. So I wouldn’t feel so anxious or, or guilty or shameful or you know, whatever was happening so that I could resolve it in some way that was in a healthy way. That’s the that’s the only thing when I say Why me? I don’t really say why me anymore. But early on, I did for sure. That’s kind of what I come up with.
Victoria Volk 1:29:20
Thank you for sharing. I think it’s a good message that people need to hear that. Again, we don’t need to get a diagnosis, to tie in with ourselves until, like, step back from our lives and take a bird’s eye view of why am I feeling this way? What is going on. It’s like when we don’t go to the doctor when we’re feeling well and healthy. We go to the doctor when we’re not feeling so good.
Anne Jacobs 1:29:51
Right.
Victoria Volk 1:29:52
That is also true of our mental health. So, let’s not get to that point, right? like you mentioned support many times throughout this interview so far, the message boards that you’re on a team that you surrounded yourself with the medical team, it’s like you have these you have a lot of different teams, don’t you like the medical team, your family team, your friend, team, the online team. And obviously, that’s been a huge contributor to your success so far in managing things. What has given you the most joy in the future?
Anne Jacobs 1:30:35
Probably my kids. Um, there’s such there’s such amazing people that I you know, like our oldest was over for dinner last night. Our our middle son, we’re going east coming back in two weeks for family game night, and our youngest right now was that he’s living with us, you know, for COVID going to school and online, but he’s in he’s taken a week vacation. So he’s not at home. And, you know, I just, I just love being around them. I mean, and then, you know, I look forward to when my husband comes home at night because he keeps just keeps me afloat. He’s so smart. He’s a great sense of humor. But when you know the first word when you ask me joy, it just, like, it goes right to my kids. And they’ve always been a reason why I you know, keep moving forward. Like I’m not, I believe for me, and it’s not true for everybody. Sugar is not good for me, but I love I love ice cream, and I love cookies. I literally I’ll open up the cookie jar, and say, no, you know, if you can’t do it for yourself, just do it for the boys. All right, and the cookie jar, like goes back on. Okay, and I’m not saying I’m perfect, you know, I, I have, I eat cookies, and I have some ice cream that you know, all that stuff. But when I know I’m really not supposed to be doing something, you know, I already know it’s not good for me. But I just want it that they are the ones that pull me back. Because I want to be here for as long as possible. So that I can just be part of their lives. So, I mean, that’s that’s the, that’s the big thing. Little things are like yesterday, I was driving out to my appointment was just a regular point with my oncologist. And the spinner song that gets called out. I’ll be there something. Anyways, spinner song came on, and I love it. And I just cranked it up. And I’m at the stoplight, and I’m just dancing in my seat. And there’s all these people around me, but I don’t care anymore. Like before, like, well, I don’t want to do anything, I’ll be embarrassed. You know, it’s like you say it took the cancer diagnosis. Like, it doesn’t matter if people are looking at me funny, because I’m, I’m enjoying the song and I’m just kind of dancing and moving in my seat and the song played for most of my drive out. And that gave me joy, you know, a little peace of joy. Um, there’s, like I said earlier, there’s these two gals who post on Facebook and they take pictures too. And there’s some but what she takes pictures of rocks that have been painted, someone has taken the time to paint rocks, and they place them around our you know, our area. And I think that is so cool. You know, part of me, that part of me, I think is always been there to find these little moments, and to tune in into really acknowledge what’s happening. But I just do that even more. And if I get one of those a day, then that’s pretty cool. And actually, actually I just I honestly, I seek something out every day. That’s gonna be bringing me a little piece whether you want to call it happiness or joy or positivity. Even if I’m laying in bed. And I you know, I can’t even move my it’s gonna take it just like okay, I got a roll over. Here we go. And it’s so hard to imagine how can you feel so awful and weak that you can’t even roll over in bed, but that’s where I was. And, and I hear in this, you know, maybe I’ll hear my husband downstairs on the phone, or you know, earlier days. I’ll hear my kids and they’re all talking and laughing and I’m I’m so so sad. I can’t be down there with them at that moment, but then I’m so so happy I can hear them laughing and talking because I’m still here.
Victoria Volk 1:34:45
You can FaceTime in the same house.
Anne Jacobs 1:34:50
Yeah, yeah. Well, they’ll come up I mean, they would come up when they’re, you know, younger they come up, you know, they’d sit in bed with me and maybe we’d watch a TV show or movie, or they just talked to me, so things like that. But it’s, it’s those little times like, oh, I can’t be downstairs, but I can hear them or feel like you said FaceTime last year, I’ve been able to see my mom in over a year, but we can FaceTime and we were playing hangman for a while, you know, on FaceTime. So, I think for me, it’s really important to find something every day that it just has, you know, Ray of Sunshine that comes through. And some days, it’s, you know, clear skies and sunny and some days, it’s cloudy, but you know, that, you know, you can still see a little bit coming through, and I think that that’s what has, that keeps me going, you know, like, my kids, my husband and and, you know, going from the core and then quicksort is the opposite of, of peeling an onion, you start like with the core, and I’ll just ripple effect out the metastatic diet is such a huge, it’s, like part of my life now. And I thought, you know, the first diagnosis, like I said, you know, I had surgery, then I had started treatment in March, it was over in August. And I thought, all right, here we go, you know, not totally back to normal, but I didn’t have to fear the cancer. At that point. Is that, okay? I’m done. And at that time, they weren’t, they didn’t even tell you that, oh, you got to watch out because, you know, 30% of stage one through 330 percent of the women. I don’t know how it placement, but for the women, they’ll get metastatic cancer. You know, 70% won’t, but that 30% kind of a big chunk, they will get it. So, but no one talked about that then. Because it just there hardly anybody with stage four met at this stage for breast cancer.
Victoria Volk 1:37:01
You’re warrior, you’re like wonder Women, your cancer, Wonder Women defying the odds? How about how, as far out as you like those who have lived, maybe 15 years or more who have survived who are surviving 15 years or more out?
Anne Jacobs 1:37:17
That actually is something that that they’re working on, like I know, the University of Wisconsin a couple years ago, they were doing a study, trying to figure that answer out. There’s another, I think it’s called the I don’t know if it’s the MVC project. I don’t know if that’s the type of the official name, but that actually they’re trying to figure that out. It’s not I haven’t been kept on that. So they don’t, they don’t really know, like, of the metastatic population, what percentage is, you know, how many years? I think they say, and again, and I don’t really look at you know, I tell if I’m talking to someone I’ll say don’t look at when you go online, don’t look at the percentage of mortality, because one it’s not you, which is the biggest thing in tos there. You know, some of this information is really out of date. Because there’s so every woman’s body makeup is so different. And you’re going to react differently to whatever medication you have. So for example, I’m called what’s triple positive you know, got her hormone receptor positive and her two new positive so those er estrogen progesterone and her two positive this triple positive when I was on this chemo drug abraxane is all I could do to squeak out a year. But there’s another lady who I know on the boards, she’s been doing it for five years. It note with no problem. So her body cam, her chemical makeup, she can handle it, and then I couldn’t. So that’s why I tell women don’t don’t look at survival rates. Because it’s not who you are. It’s not nice. Yeah. It’s not taking into consideration everything about you. But so that Yeah, so anyways, they they’re working on those numbers now because they up until I think I answered the Wisconsin survey four years ago, and I don’t know where they are, you know, on it. I signed up. Yeah, give me the results. But I haven’t gotten anything. But that’s, that’s a big question out there. That’s getting more and more attention. So, which is good.
Victoria Volk 1:39:36
I want to read something that you share it in your email, and it’s, I had asked you the question, having lived this long with cancer in your body. Is it the will to live? Or is it just not your time? And in part of your response was and I just want to read this out loud. You mentioned m Scott pecks book the road less traveled and you said the first line His life is difficult and goes on. This is a great truth one of the greatest truths is a great truth because once we truly see this truth, we transcend it. Once we truly know that life is difficult, once we truly understand and accept it, and life is no longer difficult because once it is accepted the fact that life is difficult no longer matters. What a beautiful passage Thank you I’ve not read that book. A passage meets new once you’ve read that book. I mean, they actually did read it in high school, but you know, you’re young and you write everything and you don’t care about philosophical things necessarily. But I love what you shared in your email and what you talked about was that your freewill and and how we live our lives how we live our lives affects the quality of our life and possibly how long we have on this earth and it’s right you speaks to that control piece that you said it’s what I have control over you put your focus to your breathing your mindset your body all these areas the whole body health and wellness. Can you share in your words a little bit about that because maybe you’ve reflected on it more since that email?
Anne Jacobs 1:41:22
So, I do believe how how we live our lives can can affect our longevity and then on the so for example if I if I chose to not do you know conventional medicine and go down the natural path or you know I would not be here I would have died a long time I would have died years ago because I you know my cancer is aggressive so but if I truly believe that, you know, traditional medicine was not the path for me and that and I didn’t then I just I wouldn’t be here if I I believe for me that if I didn’t when I got the diagnosis if I didn’t try to start looking at things differently and changing a little bit of how I live my life that I’ve talked about that that would have affected the quality of my life. So I do believe we have the freewill of how do we approach these things that happen in our lives the thing i can’t i don’t know maybe the other side of the same coin I can’t figure out is I think I put in in that email the cousin of a friend of mine was shot driving home from work just he’s in his car driving home and he was shot and in the hospital and he died a week later so he doesn’t have any control over that dear friend of mine son was diagnosed with brain cancer and the way they live their life I believe in her ability and their whole you know to be a can’t imagine a stronger advocate I know that that she and they added years to his life but he died they didn’t have any they didn’t have any control of that ultimately I think maybe on this would be like a whole nother discussion I can go down that rabbit hole pretty quickly it’s like I don’t there’s things I understood we can affect you know how we our reactions to something like I’ve reacted poorly to instances in my life and tried to make amends you know that’s on me I have control of that there’s then there’s all these other things that happen that I don’t have control over and I think though that sort of what you call it that is the dichotomy anyway, that brings me to that that first line and paragraph in in the road less traveled because life is difficult. It’s also joyful and you know it’s everything but it’s not it’s not going to be easy and I think I knew that early on in my life and I was I was given that book by a friend of my mom’s and I started reading it I think once you I guess at once I understood that it is just difficult like it says you say okay it’s gonna be hard to win the hard stuff comes I’m not being punished I’m not you know I’m not being singled out it’s just life is just it is hard. It’s not hard all the time it’s it like it just you know it’s it’s just part of what happens in life but it helped me to understand that for the circumstances that I can’t control stuffs gonna happen and it’s gonna be something on the scale it can be you know, okay easily handled or can be just just horrific event and everything in between. Like I was listening to some of your other guests and cried through many podcasts, I think, oh my gosh, how did they get through? What? You know, they got through life hat, sometimes life happens to you, it doesn’t. So, when I say life is difficult or hard, doesn’t justify or minimize or rationalize all the crap that’s out there. It’s just it is out there. So I, I learned, okay, you know, I’m not hiding because oh my god, what’s the next bad thing that’s going to happen? I don’t approach it like that. I just know that I’m not being singled out. Everybody has a hard life. At one point or another. Everyone has, you know. So, it’s not just me, you know, and I’ll tell my kids or I’ll tell friends, if you see someone who has it totally together. Just know that that’s not them all the time. I remember one of my sister-in-law’s told me that, you know, bright one, her. Her first was first child was born, she answered the door, you know, he just spit up or, you know, she looks a wreck. It just, you know, and here she opened the door to her neighbor, who was totally put together her baby was like, you know, in a cute outfit? And do you want to go to the park, and she was barely hanging on by your fingernails? And just thinking, oh, my God, I you know, I can’t look like that. But then I, I don’t know what it was said in the conversation, that we’ll of course, she looks like that, because you’re not going to go outside and knock on someone’s door. Unless it’s a good day, you’re put together, you know, everything’s going along smoothly. So, you didn’t see her yesterday, and you’re not gonna see your three hours from now. So, it’s, it’s that kind of thing of, you know, if you’re having a hard time, it’s not, it’s just part of life.
Victoria Volk 1:46:55
I don’t want any things, putting things in perspective, right? Because people learn, people are more likely to show their highlight reel, right?
Anne Jacobs 1:47:03
Yeah, yeah
Victoria Volk 1:47:04
Or in person online, whichever it is, it doesn’t matter.
Anne Jacobs 1:47:07
Right, and then, you know, you find those people who you can show the ugly stuff, or have the ugly cry with or, you know, share all all the difficulties in life. But when I read that I was younger, and it just helped me to understand, like, okay, it’s, it’s not just me, and I, you know, it’ll hopefully I’ll be able to handle whatever comes down the road, I already knew that things were, the things could happen. But it was during a time in my life, when I looked at everybody else, like, you know, my sister-in-law, looked at this woman and said, Oh, my God, they seem like they’ve got it all together. And I was sort of grasping at straws, because there’s a time in my life when it was, I was feel I felt like I was hanging on by my fingernails. And so that kind of helped me level the playing in that, in that level, it’s not the right word helped me to cope better with things that work that would want you know, when I did have a hard time, and it also, if you read the book more, it kind of helps you to understand how you can approach situations in a healthy, healthier way. Or a more cognitive or centered way. At least it did.
Victoria Volk 1:48:20
Intentional too, right?
Anne Jacobs 1:48:22
Yes, yes.
Victoria Volk 1:48:23
And I want to mention too, because what I’ve heard now, like two hours, which is like amazing, like, whoa, um, is hope has been, like, the undercurrent of your whole experience so far?
Anne Jacobs 1:48:49
Yeah. I, it is, um, it is.
Victoria Volk 1:48:56
Because if we don’t have that, what do we have? Right?
Anne Jacobs 1:48:58
Right.
Victoria Volk 1:48:59
Especially someone who is facing and is going through exactly what you’re going through, like, if you didn’t have that for 18 years, like oh my gosh, like, what would life be like, right?
Anne Jacobs 1:49:11
Right. It’s, it’s carried me through. You hope that the next day is going to be better or you know, you hope that
Victoria Volk 1:49:23
And grew gratitude when it is yeah, there’s gratitude.
Anne Jacobs 1:49:28
Yeah. It’s, you know, hoping, hoping for the best in situations. And yeah, that’s
Victoria Volk 1:49:37
That ripples to and the relationships you have with people close to you is if you have hope, it gives them hope.
Anne Jacobs 1:49:46
It does. Yeah. Thank you. You’re you’re helping me very well here. Yeah, I think it is hopeful I it’s something that I I think I carry in my heart, because otherwise it’s if I focus on the times when, you know, I can’t get out of bed or I can’t brush my teeth, or I can’t take a shower for four days, because I’m not feeling good. I have the hope that okay, well, I will be able to do that in two weeks maybe. So, I, and I haven’t reached the end of the line, because I have the hope that there are more medications in the pipeline, and there are more trials and sciences working, you know, for all of our collective benefit. I actually haven’t thought what it would feel like if I didn’t have hope. So that’s, I think, why I was pausing because I think I just, I just have it. I’m hopeful that things will get better or continue to be, you know, stable. I know, eventually, actually, you know, I eventually know that the medication I’m on will stop working. Because I, you know, I’ve been through I think 12 different treatment regimens over the years. So, I know at some point, it will, but I’m hoping that it will be you know, one year, two years, three years, I think the longest I’ve been on a treatments three and a half years before had to change. So I’m hopeful that I will be on this for a long time. And then I’m hopeful that there’s a new medication that I will be able to take that will knock the cancer back. And so, as I’m talking, I’m just thinking, if I didn’t have that hope, I probably wouldn’t get out of bed. Honestly. So, thank you for for naming that.
Victoria Volk 1:51:37
This is why I love this podcast, why I love podcasting because the people that do come on here, they give hope they have hope they bring other people who no matter life’s challenges. And there, I’ve heard some really horrific stories, that there is a way out. And if we have to hold on to hold by our fingernails, maybe that’s the one thing we can do that day. Maybe that’s the only thing we can do that day.
Anne Jacobs 1:52:10
Yeah, that’s actually a, you’re giving me goosebumps. That’s a very powerful. That’s a very powerful thought and statement. Really, that’s so true.
Victoria Volk 1:52:22
What do you want your legacy to be?
Anne Jacobs 1:52:25
Oh, my gosh. I don’t I don’t know.
Victoria Volk 1:52:34
I can tell you what I see.
Anne Jacobs 1:52:36
Okay.
Victoria Volk 1:52:37
So if I were, this is my other thought. If I were a betting man, I would bet that one of your top five strengths is positivity. Yeah, it is. But never lose hope. That’s a pretty good legacy.
Anne Jacobs 1:52:55
Yeah. To never lose hope. That’s, I think you’re right,
Victoria Volk 1:53:02
The greatest lesson that you can share with people. You’re doing it right now on this podcast. So thank you very much.
Anne Jacobs 1:53:10
Thank you.
Victoria Volk 1:53:11
Is there anything else that you would like to share?
Anne Jacobs 1:53:14
I guess, as far as the, the metastatic part when you’re you’re first diagnosed and this is kind of circling back to the beginning you will have you will have loss, you like I say you’ll have the loss of sense of self, you’ll have the loss of whatever you are, you know, able to do physically, you’ll have the loss of being able to plan for the future you have the loss of the luxury of believing you’re going to live you know another 30 years, right because if you don’t have a medical condition, which can limit your longevity, you just you just I mean to be healthy, you just have to assume Alright, I’m I’m living a long life, because of course, anything can happen. But most, most people I mean, I you just assume you’re going to get up and you’re going to do these things that you want to accomplish in life and you’re going to have the time to do it. So, you lose that luxury. And in the beginning, you’re it feels like you’re dropped into a foreign country with no map, and you don’t know the language. But you know, take your time. follow your instincts, get to a point where you’re okay with your approach to the disease in the cancer, just to settle a little bit and then and then allow yourself to know that because you’ve had all these losses of things that you had before doesn’t mean that your life can’t have the joy in the positive things. To, from here on out, it’s going to be completely different, it’s going to be something that you don’t want, and you’re going to cry, and you’re going to be mad, and you’re going to scream, and you’re going to do all these things. And that’s okay, it probably needs to happen. But to understand, I guess, you know, you have hope have the hope that it’s going to be better, if not, can be the same, but it can get better. And I say that very humbly. Because I know that there for some women, it doesn’t get better. And tragically, they don’t have as long as they want. So I don’t I take that very, you know, I take that very seriously and to heart and for me, I just had to, sometimes I call it jumping from one lily pad to another, I have the hope that I’m going to get to the next lily pad, whichever one that may be, whether there’s a new treatment, or brushing my teeth, or taking the dog for a walk, or just making it through a day on the couch. But try to keep that little kernel of hope in there. Like you said earlier hanging on by your fingernails, if that’s all you can do, that’ll get you to the next day, because life does completely change. But it doesn’t mean that what you have whatever time we have left it, it can be good. at certain times, you can find, you know, joy, you can find happiness, it may not be how long you want it or when you want it, maybe you have to look for it where you didn’t have to before but it’s there. And to get to just have that hope. And I wrote up, follow your instincts because they’re, they’re there. They’re there for a reason.
Victoria Volk 1:56:43
Amen to that. I read a something today, I think it’s from Genesis, I’m not even sure but what you said made me think of it. God gives us what we need, not what we want. And we could have a whole nother topic, conversation about spirituality, and I’m all about that. Yeah, and taking because we only really touched on that, like, maybe a little bit more, like in the email and just a little bit here, but very interested in hearing the role of spirituality for you and, and all of that, um, is there anything you can share briefly about the role of spirituality and faith for you?
Anne Jacobs 1:57:30
Um, well, it’s, it’s an evolving process for me, um, I grew up in the Unitarian Church. So, I didn’t really understand spirituality until I was probably in my 20s I didn’t get that the minister we had at the time when I was growing up, I thought he was just a great man. He was, I think I’m using the term right if I remember correctly, he was more of a humanist, but he, I think that’s where I learned started to learn about the connection. You know, we’re not this just autonomous vessel here, you know, on Earth, we connect to the earth, we connect to people, our actions, and thoughts and words, you know, they all have meaning then it affects other people. So, I, I thought he was I learned, I guess, you know, you started, you know, what, how old I was little, and you grow up, and you sort of have these things ingrained. But then as I got older, I had a sense that there was something else out there who my best friend was, she grew up in the Catholic Church, and I would go to church with her. And you know, some of this stuff would speak to me and I’ve spent my life kind of exploring different churches and wrestling with the different I don’t even know philosophies the right word, but the approaches of different churches and and i don’t fit into one category, okay? I’m not a Catholic, or Protestant or Methodist. So I realized that and so for the spirituality part of me, it’s going to be probably an ongoing process for me. The day I die, probably, I believe in the power of prayer. I believe that there’s something out there. And whether it’s God or Buddha, or the universe light, you know, there’s just something out there that connects people that’s unexplainable to me. I believe in science. I don’t think science and religion are separate. I look at this whole magnificent world, you know, we live in, in the various states that it comes in. It’s miraculous to me that the earth is even exists. So that in and of itself, too mean means there’s something greater out there and people can say well yeah but it’s you know scientifically this is what happened and I and I agree you know but i think but it’s miraculous we I’m sitting at home and we have these I’m talking to you you’re in North Dakota in California we see each other you know I’m still amazed by television, you know?
Victoria Volk 2:00:26
And how about us as human as a body? Cellular like a cell we are made up of cells, cumulated cells.
Anne Jacobs 2:00:38
Yeah, I just that was yes you read my mind that in the body is just like I’m speaking and talking and forgetting my words and you know I’ve got medicine in my body keeping me alive and so these things to me are miraculous and then you know going back to there’s tragedy that happens in life and I wish it didn’t you know, I but we can’t get around it. It’s just it is there. It’s always going to be there there’s good and there’s evil there’s always going to be good there’s always going to be evil
Victoria Volk 2:01:14
There’s cause and effect.
Anne Jacobs 2:01:15
Cause and effect. Yes.
Victoria Volk 2:01:16
A natural law.
Anne Jacobs 2:01:18
Yes. All of that so so I absorb all of that and I can’t like and that affects it’s still a work in progress. So I can’t I’m I don’t have a for me, it’s a luxury because I grapple with this to say yes, this is what I believe in. And it’s just it’s a more of a straight path. For me, it’s just all these things that come into play every day. But I think it comes back to hope I have to believe in the goodness of people I have to you know, if you just take away the evil that happens and everyone has their own definition of evil, but it’s always going to be there, but I have to believe in the goodness of people and the ability to change and kindness and love out in the world. So that but I can open up the Bible and I can read something in Proverbs that just is just beautiful. You know, I can’t I wish I could memorize these things, but I can’t. So you know, I read the Bible. I read philosophy it’s my one of my brothers and my mom and I and his girlfriend were talking about Socrates and Aristotle and Plato you know and texting and you know all that to me is just fascinating and unfortunately I don’t think I’m going to have enough time on earth to figure it out but I’m really I enjoy these conversations I have with them I enjoy reading about it I have a book that’s called the power of prayer you know for mom a power of prayer for women and I’ll read the some of it I don’t get it I don’t agree with but I can always find something that speaks to me and whether it’s effective or not, I feel better you know, it’s what I incorporate in I will say there’s little things that happened like I just last week, I was having a conversation with our son and my husband we were in the kitchen and what I realized that happened is that I was playing with my rings I threw three rings and one of them had slipped off and had fallen on the carpet under the table. I didn’t know that I woke up the next morning and look at my hand there’s only two like oh my gosh you know what I had to retrace my steps and I said this I said this little prayer doesn’t work all the time. Like what what is lost maybe found I went through the garbage I went everything twice every step retraces my steps all day and I thought I’m just gonna sit down at the table and cry and there I see it under the table on the carpet. Well, were my prayers answered. I don’t know what if someone had found it eventually Absolutely. You know things like that happen through life that make me catch like oh, like the intuition i think is part of spirituality. There’s some connection there does God answer prayers you know, I don’t know because there’s a ton of there’s millions of prayers that go on answered and then that’s a whole nother you know, podcast but for spirituality for me, I just have to the hope the goodness in people the connection that we make with others. I think if you’re a you allow yourself to feel deeply you interact with others at a different level. Like I’m talking about that maybe to the core, you know, I’m having like, what are they the impact? Is that the right word?
Victoria Volk 2:04:56
Yeah, yeah, that’s me.
Anne Jacobs 2:04:57
Yeah. So, to me, that’s all it’s all intertwined. But I do believe there’s something out there I don’t exactly know what it is. I don’t believe that you know there’s a punishing God. One thing that no one said to me was Oh, you’re being punished thankfully, I’ve heard I’ve heard other friends of mine whose children and they will be told that from a religious you know, which I think is horrific but horrible. Yeah. Um, so I don’t believe I think spirituality is love and hope and kindness and helping each other and the goodness of people.
Victoria Volk 2:05:40
You know, the shortest sentence in the Bible?
Anne Jacobs 2:05:45
Ah, I knew that I forgotten. No, what?
Victoria Volk 2:05:47
Jesus wept.
Anne Jacobs 2:05:49
Yeah. Yeah.
Victoria Volk 2:05:50
Now if that isn’t humanizing enough for all of us. Like it’s okay. And you move to speak, prayed move to speak.
Anne Jacobs 2:06:05
Yep. A lot of good lessons come from him. So many good lessons.
Victoria Volk 2:06:10
You are magnificent in my eyes
Anne Jacobs 2:06:12
You are very kind.
Victoria Volk 2:06:16
And I thank you for being here. I’ve loved absolutely loved this conversation. I hope we have another one. Again, I want I want I would love to have you back some time.
Anne Jacobs 2:06:29
You have a gift. You really have a gift you are. You’re doing what you’re supposed to be doing. So, it’s really my honor to be part of this podcast, it really truly is. Thank you.
Victoria Volk 2:06:45
Thank you for saying that I feel fully aligned with what I’m doing. So yes, it feels very good to me. That it is my joy, for sure. I don’t get paid for it either. This is just, I I’m just here to give you space, give other space and bring hope to people. And I think you very much so did that today. So, thank you.
Anne Jacobs 2:07:12
Thank you. Thank you.
Victoria Volk 2:07:15
Where can people find you? You want to reach out?
Anne Jacobs 2:07:18
Um, well. So, I don’t, I used to have a website like 10 years ago, but felt that’s gone. But I’m on Instagram. It’s at Blue Line crossing. And I’m on Facebook, but it’s it’s closed. Facebook, but if I think you can message me still through Facebook, if you know and I’ve done that, you know, contact or connected with people who’ve messaged me. And we have conversations on that the messenger.
Victoria Volk 2:07:59
Is there a Facebook group for those diagnosed with metastatic breast cancer that you could send a link to me and I can put in the show notes that they could request to join?
Anne Jacobs 2:08:08
Absolutely, yep.
Victoria Volk 2:08:09
Okay. I would love to do that and listening to this.
Anne Jacobs 2:08:16
Yeah. And anyone who’s listening who has metastatic cancer, this group this group is it’s really a godsend, the women on it are, are so helpful, so caring, very knowledgeable. And you’ll get every, every type of breast cancer, you know, every characteristic of breast cancer on there, so I will absolutely do that. Yeah
Victoria Volk 2:08:40
Okay, thank you. And reach out to her on Instagram at Blue Line crossing if you just want to give her thanks for sharing her story and telling her how magnificent she has sent her some good healing Juju. Thank you.
Anne Jacobs 2:09:01
Thank you. Thanks for listening to me ramble on.
Victoria Volk 2:09:06
Many blessings to you and your family. There was so much I was I there’s a lot of questions I didn’t even get to. So again, I mean, we I wanted to ask about relationships with your husband and how you both have knit, how he’s navigated this and how it’s looked for your kids, and there’s so much more that we can talk about. So, I definitely plan to have you back. Thank you. And remember, when you unleash your heart, you unleash your life. Much love.
Cancer, Death/Dying, Grief Stories, Grieving Voices Guest, Grieving Voices Podcast, Parent Loss |
Dr. Chris Kerr | Death Is But a Dream: End-of-Life Experiences
SHOW NOTES SUMMARY:
This episode is a must-listen for anyone who is facing terminal illness right now.
Whether you are a caregiver or a patient, Dr. Chris Kerr’s wisdom may help you feel empowered in how you address the end-of-life experience.
Dr. Kerr’s work has focused on affirming that end-of-life experiences are real and how the medicalization of the end-of-life process hinders one’s ability to have “a good death” and also impacts the family who will be left behind.
Dr. Kerr’s message is impactful because the extensive research he’s conducted over the past 10+ years has created a positive impact in the lives of many.
How society approaches end-of-life needs to change and, it starts with education. Please listen and share this episode. Then, watch his documentary when it releases or read his book, and consider how end-of-life can be a beautiful, integrative experience. And, in the instance of terminal illness, it’s not one that has to be feared.
RESOURCES:
CONNECT WITH DR. CHRIS KERR:
Victoria Volk 00:00
Thank you for tuning in to this episode of grieving voices. Today my special guest is very special. It’s kind of feels like a big deal to me is Christopher Kerr, Dr. Christopher Kerr. He is the chief medical officer and CEO for the center of hospice and palliative care in Buffalo, New York. To date, his him and his research team at hospice buffalo have published multiple studies on the topic of end-of-life experience, over 1500 end of life events have been documented. And so that’s what we were talking about today is end of life experience, but also his grave story as well. So, thank you so much for your time today.
Dr. Chris Kerr 00:42
Thank you for having me. Thank you for doing this, this is important.
Victoria Volk 00:47
So, can we start where your work is rooted?
Dr. Chris Kerr 00:55
Sure. Wait, how it began, in terms of medical sense, or more personally?
Victoria Volk 01:00
More personal.
Dr. Chris Kerr 01:03
Yeah, I, I lost my father, when I was 12 years old. And the last time I saw him, and actually, he was certainly in a different place. interplanar place, and he thought that he was reenacting or re-experiencing what we did every year, which was go fishing. So, he was trying to get me ready, grabbing my shirt and such, saying we had to catch a plane because we’re going north. But he was smiling. And that’s the last time I saw him. So, I actually experienced what he ended up studying as a child. But when you lose a parent of 12, it’s, you know, its obviously life changing and traumatic in ways that are hard to describe. It’s not something that I openly talked about adults with at all, actually. What happened was, I inadvertently ended up doing hospice, which was the last place I was actually here trained to be a cardiologist in Buffalo. And I needed to moonlight more. And so long story, but because I had to carry a pager from cardiology, I couldn’t work in an ER anymore. So, I was doing home visits for hospice, I saw an ad in the paper, actually, and started doing it. And it was really the thing that I, you know, there’s this intense painful memory of my life earlier. Now I’m seeing at the end of life, as I’m caring for people who are dying, because no more sterilized medical environment. You know, there’s a big barrier between you and the bedside. And you’re you’re knee deep and demonic in bureaucracy. And when there isn’t a lot of dude do to the patient, you’re less involved as a physician in today’s world, but what I actually had to attend to them and be present, I’m seeing that this whole thing again. And, and, and I really never talked about what happened to me, as a child, I, as a young boy, where I lost my father, I had a very brisk and pronounced response. I. And I didn’t mention his name alone, that experience. Now what happened was, I was given a TED talk. And by this time, I had already had all this research, and it was getting all this notice and whatever. And I was bothering me because it was just so dishonest, because I wasn’t tying my piece of the story, right. And so I took a friend of mine who I trust out for lunch, and it’s like, I got to taste them again. Here’s the real truth. You know, I, this is how I came into it. Because these things kind of aren’t random. And so then I just want I want to give a TED talk. I just told my piece of the story. So that was actually the first time I went out there with it but yeah.
Victoria Volk 04:07
I love the TED Talk, by the way, and I will put the link in the show notes. And so, the research that you’ve done, how many years First of all, how long did this take you?
Dr. Chris Kerr 04:20
It’s actually a funny story. I guess it’s been over a decade.
Victoria Volk 04:25
Oh, wow.
Dr. Chris Kerr 04:26
So, what was I did it because I was really pissed off. I had nothing to do with getting this kind of attention at all. I was trying to, I teach medical students and residents, and they’re required to do rotations through hospice for a few weeks. And I was challenging, you know, that, you know, there’s a sigh of die and you see this objective piece, but then there’s the experience of dying. And what’s it what actually the patient has experience. Sing and dine is unique in that it’s changing your vantage point. And it makes sense of your perspectives, and your perceptions change dramatically. And this is just universal. It’s been described throughout time that they people are having these very, very intense inner experiences. And you know, we live in this evidence-based time. And doctors are ever more discomforted by things they can’t measure see biopsy image. And so, they might, the students will always say, you know what, there’s no evidence for that. And I said, well, yeah, it’s been talked about forever, but not evidence in the way they like to see it. So, I did the studies formally, and we went through a university process and an IRB approved study, people had to consent with a witness. They were screened every day. In participations, we’d approach patients every day until death, about these experiences, we had to rule out that they weren’t confused. And that sort of thing. And we filmed actually, interestingly, only because we were trying, we knew that you had to see it to believe it. And people would make assumptions about these patients that they were feeble minded or confused. And it made them look like you and I. And in the film, ironically, it was meant for a medical audience is now part of this full-length documentary. So, it’s funny how it turns out. So anyways, so I did that for a medical community. And, you know, now we’ve published probably eight papers, and they always get published, but you don’t hear a lot of noise, but, and then what happened was really, really weird. and ended up seeping out to the nonmedical community. Starting six, seven years ago, and honestly, we have never been able to keep up with it. Ended up on the front section, the science section, The New York Times, Washington Post, the Atlantic Huffington Post, two or three times, Scientific American Psychology Today, but then ended up going around the world. It was Indian China, Germany, and it just, it never seemed to stop Korea. So, it’s, the point is, and it’s a sad point is that what didn’t resonate with the medical community, the people providing the care resonates enormously with the people receiving the care. And it’s the best part. But the TED Talk isn’t the TED Talk. It’s the comments. And because the comments, people have never had this stuff, really properly validated for them, and allows them to share their stories. And they’re really there. The I think the comments section is more interesting. But so, it’s been very interesting. There’s been a framework for this discussion. And it resonates with people, and it doesn’t seem to stop. So yeah, that’s, that’s how it all happened. Yeah, I can do one thing, and this thing just kind of went out of control.
Victoria Volk 08:08
Do you get a sense that people I mean, obviously, people are just kind of thirsty for this?
Dr. Chris Kerr 08:13
They are, they are. And what we did that was really, really different was it was very, very important. As everybody who has done this historically, has used it as a keyhole into the afterlife. And then that gets you into a camp that’s paranormal, religious afterlife, or whatever. And we didn’t do any of that. All we wanted to do was capture what the patients were telling us in the dining experiences, what they were experiencing, without extrapolating or editorializing or assuming and we just left it at what it is. And we knew that would have more appeal. Because you’re preaching to the choir in the paranormal world, right? And we just didn’t want to do that we the idea is that dying is a mystery unto itself, period, without having to go into reincarnation, or, you know, I have no idea. So, we just kept it on point.
Victoria Volk 09:06
What comes to my mind is that, and there’s a part in your book to where you say and speak. I didn’t mention the book, but you have a book, it’s called Death is about a dream, finding hope and meaning at life’s and, and you mentioned a TED talk. You mentioned the documentary, you know, the surviving death, but then this is going to be a documentary of its own.
Dr. Chris Kerr 09:30
It is a documentary. It’s been released next week.
Victoria Volk 09:34
All by itself? Yeah, the title, and it’s titled death is about a dream based on our book, correct?
Dr. Chris Kerr 09:39
Yeah. And then, and then it’s in the rest of the country in April.
Victoria Volk 09:44
Can’t wait for that. So, there is a part though, in your book where I have a note here and it’s dying from loneliness to a life affirming connection. So, It’s this dyeing process that takes you. It’s like this life affirming experience. And you say it’s for the dying as much as it is for the bereaved, can you speak to that a little bit?
Dr. Chris Kerr 10:12
So, that we see dying as a physical state and suffering lessening of the person. But what’s missing that is that there’s powerful processes going on from the patient’s perspective. And they’re remarkably comforting in a remarkably life affirming. And so, what we did in our studies was ask them what they were experiencing, we even looked at dying as post traumatic growth. And this idea that you can be within a negative experience of going to war, but there were gains. And what we found was really remarkable, right up until the last day, people who are having these experiences are gaining insight and understanding and adapting. So, there’s this paradox where you are physically declining, but spiritually, psychologically, you’re actually growing. And the direction actually affirms the life you lead, because the end-of-life experiences focus on very, very specific things, which most notably is the powerful relationship she cured and unconditionally are full of love. So that you end up feeling better and in process and kind of lessen the fear of dying. The breed pieces is interesting, we have studied, surveyed and interviewed 750 people. And it’s just this old adage, what’s good for the patient is good for the loved one. And as as, as a brief person, you can view death as decline towards nothingness, and emptiness, and, and loss. And what you find is actually, there’s, there’s lots of this connectivity between what the person’s experiencing and what how they relate to the breed. So, an example for is, you know, to parents or to to a couple who have been together for 16 years. And they lost a baby 55 years ago, by the end of their lives, you know, she’s re experiencing the child, you know, holding a child or what have you. And now the spouse is looking at his partner, and that completely inverts dying as a as something more than empty, but actually rich with love, and and how we see a person die. I mean, when you’re walking at the bed, at the bedside of someone who love your concern beyond their physical comfort is where were they and how are they? Are they Okay, when their eyes are closed? And what the data shows is they are, and they’re not alone. And we’ve actually looked at, we’ve taken grief tools and measured grief processing. And this absolutely does help them in the green in the briefing piece. You know, knowing that the person you love is reacquainted with their lost mother. It just pulls it all together in a way that that it’s provide source.
Victoria Volk 13:21
Now I can say from experience when my dad was dying of colon cancer. I was eight. Well, actually, he was sick for two years prior to that. But that experience wasn’t mine or ours, because it wasn’t something that was talked about in the late 80s. Obviously, how has this work, helped you heal from your own loss?
Dr. Chris Kerr 13:46
We were in a similar era as children losing parents, and I not so sure it was done well, we, we still do treat dying as a as a medical problem to address resolve when it’s really about a closing of a life. It’s not about a failing body part that’s over, you know, when someone is past treatment and everything like that. People don’t die in parts. They die in totality. And totality of life is defined mostly by the relationships. So, medicine takes something what is ultimately a very human experience, and they sterilize it into something that isn’t and you know, working in hospitals for 2122 years is, is interesting because families still will come in here, their loved ones weeks before died. And they’re talking about test results for imaging. And you know, it’s absurd. It’s almost a distraction to the experience of end of life, which should bring people together dying as lonely as it is when we medicalize it like this, and particularly what probably your eye experiences were not actually brought closer to the person inadvertently were brought farther. And I think that complicates bereavement terribly. Actually, no, it does.
Victoria Volk 15:12
There is a note I have here to medicalizing the process of the dying. Can you go a little bit more into depth on that?
Dr. Chris Kerr 15:20
Yeah, I mean, it’s a complicated story, but we have a healthcare system. It Well, first of all, the economy of healthcare is completely based on doing things to people. You get world class interventional care, as long as you’re considered treatable, and then you fall off a cliff literally, when you There’s nothing more due to you, we have actually over medicalized that, and deprived it of its humaneness. And we’ve inadvertently made it more lonely. And then we’re shocked we we did we I think we we do we complicate bereavement terribly, because we talk about somebody who’s on an obvious dying trajectory. So there’s always something you can do to them. Just one more thing, then we’ll take another picture next week, when really, there’s a lot of data on this, particularly at tertiary so high end, medical centers actually have less don’t add to mortality they, they take from it because this idea of medical futility doesn’t seem to matter. So, they take people who have clear terminal trajectories, but they keep it going. It’s hard to put into words, but basically, I’ve been doing this work for a long time, third of our patients are in hospice for seven days. And that’s a national number. And the hospice benefits for six months. The reason why most of those patients are in for seven days, is because the doctor talking to them hasn’t had an honest conversation. And there’s this enormous discrepancy between what the physician knows and what they actually share. And the more doctors that are involved in the case, the less they actually know. So nobody’s surprised. Like if you’re a physician, you find out your patient with advanced cancers died, you’re you hear about it, you’re not surprised, you probably didn’t tell the patient family when so there’s not a lot of information shared, I always tell tell the story, we live in a by a major Cancer Center. And I can tell you, the people who come into our hospice facility here know where to park their how much it costs to get a coffee there, but they don’t know when or how they’re going to die. And it’s actually not that difficult to prognosticate. But people just don’t have the discussion. So we’re left traumatized because it’s treated dying in a medical environment is treated like an acute. of that. The only thing that’s acute is the sudden awareness, and ability to finally tell somebody, a lot of our patients, this is sad, end up making their own call to come out into hospice out of desperation. And imagine the courage that takes when the doctor could have helped them in the transition. So nearly, you know, almost a half dying people visit an ER and in the last one to three months of life, because that’s the only place they’re recognized. But it’s um, yeah, it’s an absurd, absurd, we’d become evermore death denied.
Victoria Volk 18:33
I would agree with that in the work that I do with grief recovery.
Dr. Chris Kerr 18:37
Well, what you what you see on the bereavement side, which is a whole other topic, which I we’re doing some work on here, you’d be very interested in is this notion of medical harm. I have a theory that we complicate bereavement, because we we we don’t help well enough loved ones come to the understanding that this is where their loved one is at. And we don’t have honest conversations about what the dying process is going to look like, what their loved one is going to need in their care. And so what we do is, there’s a void filled by Nolan’s and the family tends to assume the worst. They’re just crippled with fear, for pain and all these symptoms that are really 99% of time easy to manage. But we don’t have those discussions. So, there’s a lot of data on prognostication, but in general, doctors get it wrong, and they over prognosticate by a factor of two to three. And what that does, is yes, interesting. You should look it up. How accurate are doctors’ prognostic? And because there’s huge implications for braven because it, losses enormously. It’s one of the biggest challenges you’ll face in your life is the loss of somebody you love. So, So you can either be brought into that openly and honestly, and process and adapt, and address and all those things. Or you can be all the sudden faced with this brutal reality and an injured, and it complicates how you recover. So, doctors inadvertently do a lot of harm by not being honest. And we’re constantly pulling out people from the hospital who are, you know, there’s no chance in hell they’re living, but they’re still in this process of acute medicine under the illusion that they’re going to do well. And as I said, the iria, as you go to the highest medical centers of the world, they actually live less law for all the processes. So, it’s actually the inversion.
Victoria Volk 20:51
And what’s the quality of that life that’s left. And that’s the thing.
Dr. Chris Kerr 20:57
The data until recently is very interesting, which is the vast majority, 70% of Americans want to die at home. 70% of Americans don’t. And that’s really interesting. The, that’s changed, particularly with COVID. Because people are fearful of going into hospitals and facilities.
Victoria Volk 21:16
And my dad passed away in the nursing home, living in a rural area where we do, there isn’t actually access to hospice. My mom cared for him as long as she could. She just felt like he needed more than what she could give him medically, right? Because there was always this hope, of something working or something helping or, you know, take his pain away, or anything like that. And I haven’t thought I thought of a question. It might be really deep. I don’t know. But do you think that there is like when I think about your work and the work that you’ve done, and I think about how, you know, some people want to just die suddenly, like, they don’t want to know what hit them. I think there’s a beautiful gift in having the gift of time, that knowing that you have this diagnosis, you know that there’s a book and you don’t know when, but that you have some control over how you live the rest of your days. I think there’s a gift in that. I’m curious what your thoughts are on how people have, like people that have been in your care? Do they regret the suffering that they’ve had to go through to have these experiences? Or? And I don’t imagine they do, but I don’t know, maybe I don’t even know how I’m asking this but.
Dr. Chris Kerr 22:49No, I haven’t met the person. I haven’t met the person that didn’t want control of their own life, even in the face of death, that didn’t want to be informed. They didn’t want to be protected or denied in their own realities by somebody. I’ve never met the person. You know, it’s funny, because people think, oh, you know, they don’t want to know, they actually all want to know, it’s their bodies, their life, it’s not working the same, they can stand up anymore, you know, there’s an inch, there’s intuition, just, they’re, they’re in that body. So, the denial actually is harmful. So yeah, they want to know, and they need, they need to close their life, there’s things they want to say this people they want to connect to. And there’s beauty in a lot of it, because it reduces our relationships to what matters. So, you’re stopped worrying about your tax bill, but boy, you want to hold that grandchild, like there’s richness in it. It’s part of an understandable process is less about, again, the organs not working here and there, it’s really about, you know, dimming the light on your life and reflecting and validating who you are, knowing what you’ve lived for. And generally, what happens is fascinating. So, when when we don’t have a perspective on this, because trying to understand the dying person’s perspective is too big of a reach. But I can tell you a few things happen is that at the time of diagnosis, there’s obviously all that trauma. And it’s very self focused, you know, as it should be. What happens when people realize they’re dying, their concerns, go to others. And that’s a very, very important part of dying. It’s all these gestures and love given and things that the people they care about, and they should never be denied that opportunity. It’s really, really important part of this kind of letting go idea. Is that they can reconnect with people they love. It’s, again, it’s this idea of almost being put back together before the end. And it really matters. And sometimes it’s just to be forgiven or to forgive. Sometimes it’s just express love or to remember. But it’s reconnecting and reuniting. It’s less of a dismantling process dying than it is putting back together process. And it’s it’s all of that is good stuff that affirms life, and it doesn’t deny life. So dying is interesting, because, you know, we try to protect the dine from their own experience in a way, when really, we should be engaging with them in it. You know, I, we used to do this more naturally. But we’ve again, we’ve taken the medicalization of it, to the point that we focus on a medical paradigm of medical paradigm, rather than a human one and they’re very different.
Victoria Volk 26:06
I interviewed a woman who has had metastatic breast cancer for 17 years. And, you know, she said, well, I’m considered an outlier. And there’s another woman in her group that she’s a part of who’s lived with metastatic breast cancer for 25 years. And, of course, it wouldn’t be from, you know, it’s Western medicine is obviously a huge contribution to their extended time. There’s also hope. And so, do you feel like in the work that you’ve been doing is it because they come to you, it’s usually closer to the end, like they’ve not given up hope that they, maybe it’s been transformed for them, like, you see, in the work that you do?
Dr. Chris Kerr 26:54
Yeah, I don’t see people. Hope doesn’t ever go away. And what you hope for changes. And so, when you’re in the struggle with your disease, the attitude should be always hoped for the very best, like, you know, an unusual recovery or protracted life, but also prepare for the worst. That that duality of approach is really the most graceful way through these kinds of illnesses, is you don’t deny the fact that, you know, this could go the other direction, but boy, I hope and fight like hell, that you know, you’re going to live and live well. The people that I take care of their hope, actually, I think in some ways is stronger. But they’re hoping for something else, they’re hoping for a peaceful end, they’re hoping for dignity. They’re hoping for autonomy, they’re hoping to reconnect with people they love, they hope to have the opportunities to say what they want to say to who they need to say it to, it becomes much more of a giving gesture than it is worried about, you know, if you’re unloaded, if you’re unloaded, have that whole stress and weight of survival or not. And you’ve already kind of crossed over how it changes people’s paradigms thought is really fascinating. But hope is still there. It’s just hoping for something else. I love that. That’s why people you know, I’ll tell you, it’s interesting. He was I talked about this in the end of the book, but one of the more interesting things, when we first started writing the university or pill university to the states were denied. Because, you know, we want to sterilize the dying and put them on a shelf and don’t interfere with them kind of thing. You know, which is actually the worst thing because they’re dying is lonely, and they were locked into a white ceiling. And so what’s fascinating is that everybody in that book is who they are. And in the film, and not one person who was approached and denied to participate. That’s a hell of a lot of people between the film and the book. And, and they’re telling the real stories of their lives, like the hard stuff. And you’ve got to ask yourself, okay, well, there’s no secondary gain. Some of the people who are participate are literally days or a week from dying. And so why are they doing this? Why is spending their precious time and energy and, and it’s because they’re still human. And that means they still want to have meaning they still want to be heard. Still on have relevancy, they still want to connect. And that never goes, even though they’re going to be dead. Like they know there’s banality, but it’s, it’s part of our human condition that we it’s defined by our ability to, to relate to others to discuss and to talk and to be heard and to hear back and that never goes away. So that there’s hope in that as well. Hope that you matter and it’s up It’s really a subplot within that book.
Victoria Volk 30:02
Do you find or have you been contacted about from different places around the country? Because like I said, you know, hospice care is very difficult to come by, in a lot of places. Do you see that starting to change? auspices? Just the access to hospice care?
Dr. Chris Kerr 30:22
It’s unfortunately, since I started, there were very few for profits. And like in New York, it’s a it’s, it’s, it’s licensed by the state, and there’s only one in every county, there’s 5500, or something hospices in the United States. Yeah, and one of the pros, one of the initiatives is to improve the access to rural areas. And I actually think it’s going to happen more, we’re seeing more of it because of telehealth, ability to meet people remotely, because there’s just the practicality of having on call systems and access to people who are distant, but we’re getting better. And there’s a lot of incentivize, you know, grants and dollars on the table to do that, you know, the Paris systems now ask him, you know, how you’re going to get to our members over here. And that’s exactly what they should be saying.
Victoria Volk 31:19
Well, that gives me hope. Um, so the patients that have come to you for end-of-life care, the significance, I imagine you kind of spoke to this for the bereaved. And that’s kind of where I’d like to take this conversation. Next is those who are left behind? Has it really shifted? Or have you seen shifts in people’s perspectives about what they then want for themselves?
Dr. Chris Kerr 31:49
It’s a great question. Yeah, not measurably, but certainly, anecdotally. Yeah, it’s interesting, this is in the film, there’s a number of people who speak very clearly about us. And more, what it does is it informs them of what, from the experience, they learn that their fear of death is last definitely. And I think that matters a lot, because of all the symptoms of dying, fears actually probably come close to the top of the list. And they they end up more with a faith that the story is not as bad as feared, you know. And that, that, that again, that really comes out in in the in the film really, really well. I actually think the family members are as movie as the patient’s, not more so in some ways. It there’s a lady in a film, for example, who, whose mother has very advanced dementia, and she’s in a, Michelle Sony. And the weeks prior to her death, she’s trying to escape all the time. But she’s happy as can be. And what was happening was, the daughter would go and see her every day. And she was having these rich, meaningful dreams about her deceased husband. And they had this kind of fairy tale, marriage of love. And so what’s happening, the dreams are so real during vivid that she’s acting on. And she’s trying to leave the building, because she’s always think she’s going to go past to get to the church, whether she’s to meet her husband to get married. And this happened right up until like, the last days of life. So here she is. And this is the paradox, if at all, is that she’s losing her life, but she’s actually reliving the best day of her life. And it was in that mindset that she she died, that she was getting, she was euphoric. This notion of living again, with her the one she loved. So, what that does to the daughter is completely changes her perception of loss.
Victoria Volk 34:08
It gives them an opportunity to open up that conversation I imagined because otherwise, would that have happened, you know?
Dr. Chris Kerr 34:15
Right, because people tend to need permission to have these sort of conversations. And you’re right. Yeah, it does wouldn’t happen. Yeah. You don’t know or would you just be medicated? Which actually happens a lot? Yeah. Good point.
Victoria Volk 34:33
So, what would you tell somebody who is watching their loved one suffer and they’re not sure what to do? They What do you advise people?
Dr. Chris Kerr 34:46
You don’t have to do this alone. First of all, most of America you can get help. And it’s specialized help, which is hospice help. I worried that people in the caregiving Fascinating, and that people will describe it as the best harvesting you’ve ever done. So, there’s great human value in stopping your life and becoming the character. But it shouldn’t be done as though you don’t, you’re alone with it. And so getting help, like hospice, which was designed for the home, is really, really, really advisable. And again, most people in the nation have it, you know, in terms of this kind of work, it’s really giving people permission, you’ve got to almost give them a framework, the idea that this happens, you know, the people nearing the end of life are their sleep cycle changes, the architecture of sleep changes, their level of alertness changes, dying is progressive sleep, nobody dies awake, and it you know, it’s really two things, you eat less, and you sleep more. And in that state of sleep, a lot of people have these very intense experiences, and don’t be afraid of them. That doesn’t mean it’s drugs or that their diseases God with their brain, and ask questions and allow it to occur, give it the space to occur, because it provides comfort and meaning, you know, nearly 90% of our patients, if you follow them daily report at least one event. But it’s not it’s with has value.
Victoria Volk 36:24
As a teenager, I worked in a nursing home. So obviously, a lot of people pass away and things and they never really talked about or explained or you don’t really get educated on the process of the dime, you just kind of learn on the job. And one of the things that really stuck out to me, and I still remember and I saw it too. And when I did home health, because there was a few, I had some, some clients that were on hospice at home. And they do this thing they call it picking now, I don’t know, maybe you can clarify for me, but what is actually happening when someone is, you know, reaching into the air?
Dr. Chris Kerr 37:02
So, it’s a great question. It’s a whole area of interest in my so there’s, it was actually, those actions were actually named by hip hop Hippocrates. So, it’s always been known. And basically, what happens if you take somebody who goes into delirium confusional states, it’s often because their sleep cycle is is complete disarranged. And it for example, if you went to bed tonight, and I woke you up, every two hours, with three or four days, your dreams would become very intense, and certainly become virtual. So, in a nursing home, it’s universal, you’ll see it particularly sundowning hours, because as to do with our day night cycle, you’ll see people either looking right through you, or grabbing for things, or playing with their sheets, or wind to get up. And because they’re in their dream, their participants in their dream. So they think that things in front of them. The dreams are normally you don’t normally dream, you’re just lying still, you’re doing something. So they’ll say they’ve got to get up. And that’s why a lot of elderly people fall in the night. I’ve seen people that legs not forget, they don’t have legs, because they’re dreaming of something when they were younger, then they get up. So those are the those are very, very common things that happen in delirium, or confusional states.
Victoria Volk 38:36
So, it’s not part of the dying process?
Dr. Chris Kerr 38:39
No, no, although a lot of people who are dying, become delirious, but typically towards the end. And oftentimes, because there’s unmanly symptoms, and it could be something just like constipation or nausea. When you imagine you when you have the flu, the one common denominator of all illness is this poll to go to bed and to sleep. You know, you don’t go climb a mountain, you go, I just want to crawl under the covers, and I want to sleep. And then something interferes with that sleep. Anything that sets the stage for confusional states. So let’s say you got the flu. You ever had the flu? And you want to go to bed and alarm clock goes up every hours. Have you had a child? Have you ever been postpartum and you’re gone days without sleep and you’re hearing the noises and the baby cry, whatever, and you’re pretty close. Now you imagine you’re at and you have that level of sleep disruption, then then they get confused. It’s why it’s used as a form of torture and more. Just keep waking somebody. They’ll everybody will get confused. And one of the pieces of confusion. As that dreams become your in your dream, and the themes become horrific, the worse it is, just like your mood becomes worse with one night’s missing one night’s sleep. Now you’re, you know, four and five, and then you know, you think there’s a fire somebody is robbing you, you’re paranoid of the person giving your care. So that whole dissolute dissolving of the mind is very, very tied to sleep. And they’re basically dreaming with their eyes open when they’re doing those things. It’s why very nice people can become combative in a nursing home. And tragically, they often need to be taught tied up, why you try keep elderly people out of the hospital, you keep them in their home, that they can live a lot longer. As soon as you put them in the hospital and you start waking them up in the night, then they can’t go they end up confused.
Victoria Volk 40:56
That’s fascinating. I never really thought of that. Yeah, I never really thought about that. But yeah,
Dr. Chris Kerr 41:02
yeah, you take you take an elderly person who can put themselves in context, because everything’s familiar. They know where the nightstand is. And then they go to a hospital. And then they have somebody wakes them up to give them until they wake up and they’re disoriented, and they’re not sure. Where’s my nightstand? And so that, that’s untain them. And I’m caring for my mother. No, no, they’re Ontario. And she’s 88. And you have to be very careful waking her up, because it takes a lot for her to put herself back together. And she’ll ask questions, why are these people in the room have done it? I know, 10 minutes later, she’s funny. But sleep is a is really the fifth vital sign for elderly people. And if you don’t protect it, well, you can confuse them off.
Victoria Volk 41:50
Interesting. Thank you for sharing that. Its very helpful. I think for many listeners, who are the caregivers, and their loved ones right now.
Dr. Chris Kerr 42:00
Yeah, our alarm goes off about sleep more than anything else. Because as soon as you have an elderly person who’s starting to have fragmented sleep, you’re, you’re they’re there, it’s going to be very hard to keep their mind together.
Victoria Volk 42:17
So where does this? I mean, it’s been a long time that you’ve since you’ve started this research. And is it starting to morph into another area of interest for you?
Dr. Chris Kerr 42:28
Yeah, you know, we didn’t want this to go away about five years ago, but that the momentum for it keeps going. So, we keep doing the work. You know, we and we’ve extended this right, we’ve looked at children who are having these experiences, and there’s a child, there’s a chapter in the book about that. We’ve done a lot of work, obviously, with the bereaved, and looking at how that’s changed them. The next thing we’re working on that I’m personally interested in is this caregiving idea. Because if you do what we do, you’re just It’s so inspiring to see. There’s a really great story about what people how people rise up, and the strength and the courage to care for their loved one and really focus their life back to that pivotal relationship to how that influences bereavement in a good way, if they’ve been allowed to have the time to, to reconnect with that person. So that’s the story we’re trying to uncover.
Victoria Volk 43:33
And the first thing that comes to my mind is support, like the caregivers need that support. And I think that’s lacking with a lot of corporate jobs, you know, the supporting the cattaneo person that is employed that supporting a caregiver, with time off or you know, things like that, I just think that that’s something that’s not really addressed quite yet. I don’t think we’re quite there and caregiver support yet.
Dr. Chris Kerr 44:00
And within the developed world, we offer as a country, far less than half any other nation in terms of assistance in the home. So, helping the caregiver be a caregiver. So again, world class care in a hospital, very little care at home, where you’re actually going to live with your illness.
Victoria Volk 44:22
Right, and it’s very expensive. I you know, the organization that I worked for, I’m not even sure what it costs for people for to have me come into the home, but I’ve heard things that it’s very expensive, and it’s out of pocket. And that’s why people end up in the nursing home and things like that, because you just you can’t afford home. Oh, no help. And so then either to as a caregiver as a as a child of a parent who’s ill and sick and things like that you have to choose then, between your job, your livelihood, your family, Family and things like that. And that’s why you see a lot of parents moving in, you know, a lot of these combined families now the parent moving in with the child and their family and yeah, yeah. And that dynamic too, there isn’t a lot of support there. No, I would love to see your research expand into that.
Dr. Chris Kerr 45:22
Yeah. And we’re, we’re starting to film the people, as well as we’re going along, because it just seemed to work coincide well with the first book. So, where we had the research, we had the film, and we had the book, and it all kind of came together in a big way.
Victoria Volk 45:40
And there’s a lot of grief to that. Is there with when there isn’t support, as well?
Dr. Chris Kerr 45:47
Yeah, the other thing we’re looking at, and we’re doing some studies on again, is this idea of the care before death, care of the family before death, how that affects grief. So back to our earlier conversation, if you were included in the process, if you were informed accurately, if you were given time, real time, not denied. And reassured? What does that do as opposed to being there in the hospital for a month, and then the guy says, all of a sudden, this is the end. And this idea of health versus harm, pre death, and how that affects bereavement. Because I see people who are homeless have PTSD, after these losses, after an extended stay in a hospital, they really didn’t know. And they’re still hopeful until the last 24 hours. And you know, there’s a lot there. So how well are we caring for the loved ones of the dying patient? And you know, it’s very interesting, because if you ask the patient, that’s what their concern is, their loved ones. And particularly, you know, during COVID is obviously different, but people are so disconnected. People are saying goodbye over technology.
Victoria Volk 47:06
Yeah, I’ve, I’ve heard some really tragic stories about that, or it just feels so incomplete. I just want to read a little part here that ties into what you just said, it’s in your book on page, inspiring the chapter on to those left behind, when the dying patient becomes absorbed in and then comforted by their end of life experiences, it changes the context of dying from loneliness to a life affirming connection. And this is a significant, this is as significant for the bereaved as it is for the dying. That was kind of that point that I brought up earlier. And I highlighted that because I think it is such a poignant light to make and that it is as much for the bereaved, like you said, as it is for the dying, and I’ve just reflected on my loss and my father and what he went through, and how he was denied that, you know, he was denied a good death, I would say, you know, I would call it a good death. I don’t know, it just kind of makes me feel like, you know that the trade off is the suffering and maybe the pain, but like you said, That’s manageable. And so where do you draw the line? And how do you assess that when someone to manage what they’re experiencing, but yet ensuring that they can still have a lucid experience?
Dr. Chris Kerr 48:35
Yeah. I mean, it is a fine line. And the patient should direct it. And oftentimes, what is more a is they’re tired, and no, no, I need to sleep kind of thing. But you just have to be a trade off between pain management and wakefulness. It’s almost like a Hollywood notion of pain that you’re going to need this huge dose of morphine and you’re not going to be awake more. If you’ve managed pain properly all along, you’ve gained tolerance to those side effects of the drugs, typically people who are extraordinary lucid on huge doses of medicine for pain. But but but they didn’t take it all, once one day, they took it slowly, and they got used to it like you with alcohol. So I don’t think the two things are necessarily incompatible at all. It gives me hope to the people who hold off pain medicine, for because they want to preserve their cognition, their ability to be alert and think, actually do the opposite. Because nothing takes away your ability to think clearly and have a good mood than pain and not sleeping.
Victoria Volk 49:44
That’s a good point.
Dr. Chris Kerr 49:45
So, if you were to weigh this, if you were to ask me this way, this done this for decades, the side effects of any medicine versus the consequences of unmanaged pain or nausea. There’s no question. So, the interesting thing is people who decline that sort of treatment for pain medicine, you know, I don’t want until the very end, they fulfill their own prophecy. They don’t want to be confused. They want to be in control, and they become less able to do both. Because if you have unremitting nausea, and every penny, you don’t sleep. And if you don’t sleep well in the setting of sickness, you’re miserable. And you start, stop, you start withdrawing from conversations and meaningful participation. It’s harder to smile, or laugh or enjoying by or anything.
Victoria Volk 50:37
And you get delirious.
Dr. Chris Kerr 50:38
You get delirious. Yeah.
Victoria Volk 50:41
Yeah, that’s a very good point, too. I absolutely love this paragraph. End of Life makes visible the kind of light that signifies introspection and reflection. And that goes on shining in darkness, even after grief is turned from a single event into a lifelong journey. It is a light that radiates far and wide and is felt when all language fails us. That’s beautiful. I love that. That’s beautiful. I particularly love to the story of Sierra, in your book, you just want to briefly share a little bit about that story on my audience?
Dr. Chris Kerr 51:18
Yeah, she’s actually on film. That’s all captured on film in the documentary. So very quickly, she was in her 20s and had a child. And she had undiagnosed colon cancer for too long a period of time, and was in our impatient of dying, but had was not accepting that she was dying at all. And just ask her when she’s going to get better, so she can get back to the hospital, we get more more treatment. And we were frustrated, because we’re concerned for the family who doesn’t understand a child who wasn’t getting the care he needed. And the doctor in the room is finally says, you know, see, are you having any dreams? And she scrolls grandpa. And meanwhile, she’d been dreaming of her grandfather. The Darcis was he say goes, because I’ve done a good job, you know, but but I need to stop fighting. And then I’m going to be okay. And that broke everything. And of course, there’s this link between the mother that’s her father has been referred to. And this idea that she wasn’t wasn’t alone in this process, and that she was comforting. And then, then there were more honest conversations about being actually at end of life, and all the offers, but the answers didn’t come from us. It came from within her. Yeah, and that’s on film. It’s amazing.
Victoria Volk 52:54
I just yeah, thank you for sharing that. I just thought it tied into beautifully with that paragraphs that so thank you for sharing that. Is there anything else you would like to share?
Dr. Chris Kerr 53:04
No, it’s been great. Good questions.
Victoria Volk 53:08
Thank you. Thank you so much for being here. If people would like to reach out to you, where can they find you?
Dr. Chris Kerr 53:13
Oh, it’s drchristopherkerr.com
Victoria Volk 53:20
Perfect, and I’ll put everything in the show notes as well.
Dr. Chris Kerr 53:23
And it’s good because there there’s links to videos of patients and family so it’s really good to see.
Victoria Volk 53:28
Awesome, and don’t forget the book, death is but a dream. I will also link to that.
Dr. Chris Kerr 53:34
Thank you.
Victoria Volk 53:35
Thank you again for your time today. And remember, when you unleash your heart, you unleash your life. Much love.
Grief Stories, Grieving Voices Guest, Grieving Voices Podcast |
Shandra Schultz | Who Am I?
SHOW NOTES SUMMARY:
What would it be like to get into an accident and walk away not knowing who you are?
Shandra shares her experience of what it is like to see her daughter and loved ones and not know them. She found herself living a “half-life” as she called it.
However, this accident and memory loss occurred following many other loss experiences. She shares that, while in high school, she found herself down the path of experimenting with drugs and alcohol. When she was 21, her father passed away from cancer. Fortunately, she found a way to eliminate the crutches and addiction to drugs and alcohol in her life.
With every loss she experienced after that time of friends and pets, she ultimately realized she had lost a part of herself, too. This set her on the path of self-discovery and introspection. During this time, she sought out many modalities to help heal her memory loss, grief, and trauma. She shares what those modalities were.
It is through her life experience, she has found herself working as a healer today.
Shandra shares that grief taught her to live and that the meaning of life is to live it. Listen to Shandra’s story of hope and how she found her way back home to herself.
Connect with Shandra:
- Website
- Instagram
- Facebook
- Shandra is offering a special promo for my listeners: Use the promo code “LIGHTANDLOVE” to receive 50% off your first Soul Birth Session
Victoria Volk 00:08
Thank you for tuning in to another episode of grieving voices. Although if this is your first time listening, welcome. I have my guest today is Shandra Schultz from healings of Light and Love by Shandra. Welcome Shandra. Thank you so much for being here.
Shandra Shultz 01:14
Thank you, Victoria. It’s my pleasure to be here with you.
Victoria Volk 01:19
And today, we kind of connected just a little bit before we came on. And it seems like I people that are kind of drawn to be on my podcast, there’s always something I can connect with on a personal level. And, like right out of the gate, we just started talking about how both of our dads were actually Vietnam vets, and were exposed to Agent Orange. And both of our dads both passed away cancer, different cancers. But I’m sorry for your loss, and that we have that thing in common. But there’s more to your story than just the loss of your father. And so let’s start there. What initially, what brought you to wanting to come to the podcast was you had a traumatic brain injury in 2014. Correct?
Shandra Shultz 02:13
Yes. Yep.
Victoria Volk 02:14
Tell us about that.
Shandra Shultz 02:16
So, I was driving and a car decided to make a left turn in front of me without seeing me because there was another car blocking it and ended up in a traumatic car accident. I was knocked unconscious. And when I came to, I was very disoriented. I didn’t quite know what was going on. And when I looked at myself in the mirror, I was like, hmm, I don’t really recognize this person who am I. And it wasn’t until the person that I hit was right by my run by my car, I had like a call I had called will actually step back, I first looked at my phone at something in me said, hey, I think I need to call somebody just a knowing that I needed to call somebody. So, I picked up my phone and I scroll through it and nothing was familiar, except the word mom. It stuck out to me. And I said, Okay, I guess I’ll call mom. So, I called mom. And I was very, very, like, the tone of my voice was very monotone. I was like, hey, I’ve been in a car accident. Can you come get me? I wasn’t in any way. Warm or had no, no actual like emotion to my to my voice. It was just very flat. And I remember my mom’s asking me if I was okay. And I said I think so. But I don’t know. And when they when the ambulance showed up. They looked at me and they told me I was fine. So I was like, oh, okay, I’m fine. I don’t know who I am. But I’m fine. Okay, so I was standing on the side of the road waiting for my mom to show up. And she came and I looked at myself in the mirror. And that was the only way it was really kind of able to recognize her as that she looked like me. We both had short brown hair. We were had similar facial features. She just looked like me as like, oh, okay, this must be mom. And she came up to me and said, you know, asked about how I was and from behind her ran this little nine year old child, my daughter and just grabbed me and screamed mommy, and I just kind of shook because in that moment, I was like, what? Like, who am I and I have a child like and I can’t remember this. Like, who am I to not be able to remember this child like why don’t I remember this child? And it wasn’t until I went home with them and started realizing like really letting it sink in. I didn’t know them. I didn’t remember them. I had pictures of them all around the house they took me to but I didn’t know who They were like, I couldn’t remember them. And it was like, Is this really? Is this really happening to me like what’s going on? But I couldn’t tell anybody. Because they were, they were just happy I was alive. And I didn’t feel like I didn’t want to rain on their parade that I didn’t know who they were. I pretended for probably about a couple of months. I never let them know what was going on. It wasn’t till after I met my husband, three weeks after the accident that I felt comfortable enough with somebody to tell them. I don’t know who these people are.
Victoria Volk 05:37
Well, what was that conversation like, when you finally told them?
Shandra Shultz 05:45
So, I actually didn’t tell my daughter until probably two years ago. So, the accident was in 2014, I told them in 2019, so that it was already five years because I didn’t, I didn’t know how to tell my daughter that I didn’t know them. It was challenging in the process, because I remember telling my mom, when I did tell my mom, hey, I’m dealing with this, she didn’t believe me. At first. It was after I’d met my husband, it was at his prompting that he was like, you need to let them know what’s going on. Like you can’t keep this secret from them. And I remember having to tell my mom and her just kind of looking at me like you’re lying. And I remember I was going to see a chiropractor at the time post accident. And when I told him that I couldn’t remember, he attributed it to the drug abuse that I had been sober for two years at that point, but he attributed that I’ve relapsed, and that I was just trying to get out of being with my family. So my mom got led to believe the same thing. And I left and I was like, this is not what’s happening. I don’t even know what you’re talking about. I didn’t remember drug abuse. I didn’t remember any of that was like, Okay, I think what you want, but this is my truth. And it was very, it was it was challenging, because to constantly have my mom, say, don’t you remember? Don’t you remember? Like, No, I told you, I don’t remember like, are you thinking you’re gonna catch me in a lie? Like, no, I don’t remember. Um, and it was so challenging, especially with my daughter, because trying to like, keep up this front of, I know who you are. And yet, I don’t remember these things that you’re talking about. And so, between my mom and my daughter, they would constantly ask me, you know, do you remember this? Do you remember that? You remember this? Remember that? And so for almost two years, that’s how life was constantly trying to say, don’t you remember? It was like, no, and it’s not that I don’t want to remember. I just can’t. The brain works in mysterious ways.
Victoria Volk 08:06
You hadn’t told them that you didn’t remember? But yet, all these conversations they had with you, they didn’t connect it to that accident?
Shandra Shultz 08:15
No. And my daughter was nine at the time. So, I, I understand that. Like, it’s like, well, why doesn’t mommy remember, like this? And this and this. And my mom, like, when I finally told her, Hey, I don’t remember. She didn’t believe me. She thought it was me line. Because I was in this relationship. Now with the healthiest relationship I’ve ever been in my life, mind you, with my husband. He was like actually a really decent guy who was treating me well taking care of my mom and my daughter while I wasn’t able to. And yet, because of that. I also was lost in him. I kind of lost myself as a lot of couples do in the beginning. I lost myself in him and I felt safe. And so, I was like, I’ll just stick to him. This This feels comfortable, that feels uncomfortable. So, I gravitated away from my mom and my daughter. And they both told me that it actually was like they had truly experienced the loss of me, even though I was there.
Victoria Volk 09:18
That make sense. You mentioned the drug abuse, did was that before the car accident, or?
Shandra Shultz 09:25
Yeah, I had, um, from the time I was 17 until the time I was 29. So, for 12 years, I was I was very heavily addicted. i It started when I found when I was in high school, and I had some abuse happened to me. And then it just then my dad got sick, and it was like the easiest way to resist and numb out. So that’s what I did for 12 years. I was a very functioning addict, mind you, because I learned that in order to make sure people didn’t know what was going on. had to hide that part of myself. So I became very good at compartmentalizing things. But I didn’t find that out again until I fully remembered everything started in 2000, late 2015 into 2019 is when I really spent focused a lot of time trying to learn who I was. And what had happened. Why had it happened. I was just trying to understand the past, but it wasn’t living in the present.
Victoria Volk 10:29
So, I can relate to that like many people probably can. So how old were you and your dad passed?
Shandra Shultz 10:36
I was 21, 10 years before my accident my dad passed. And I was the last one to see him alive. The night that he worked, the Nike passed, I actually, he was in hospice. And I had been partying and I got this like, voice inside my head, that’s really small voice that said, you need to go see your dad now. He had been on. He had been in hospice for seven days. And he was they had kept him comfortable, I guess is the best way to describe it. He had said, you know, he had a DNR he did not want to be resuscitated, he didn’t want any of that he didn’t want any life saving measures whatsoever. So he was literally on saline. And that was it for seven days. And I remember now looking back on it, when that I had this voice say you need to go see him and just let him know that you love him and get it out. And so at three o’clock in the morning, I drove from the party I was at to the hospice, which was like 10 minutes away. And I went in to see him and I sat down. And I literally just lost it all, like I just I said everything that I’d ever needed to say in 21 years to him. Knowing that he was not going to hear me specifically like he, his spirit would be there. But he wouldn’t actually be able to respond to me. And I remember letting myself feel okay about that. Because it was like, I’m finally going to get the last word. Like, my dad was one of those people, you could never get the last word with him. And I had so much as I’m sure you know, growing up with a parent who is a cool, while I mean, you were younger, but even still in that that those first eight years, I’m sure you might have experienced the PTSD. And that is really tough for a child to live with to see their parent going through something and they don’t understand why. And it’s just it is it’s, it’s, it’s challenging. And so my dad and I did not have a great relationship. And we argued and fought a lot. And he loved me fiercely, but he was also very critical of me. And so that night, I just sat there and I told him how I felt. And I let it all out and I cried and I screamed at him and told him I hated him for leaving me. And then I told him that I loved him, and that it was okay and that he could go. And I left and I went to a party and I got a call two hours later, my mom said that he had passed. And I was like, oh, he was waiting for me.
Victoria Volk 13:39
I imagine that was very healing for you.
Shandra Shultz 13:43
It was um, and yet it was kind of surface level. Like I didn’t really allow myself to feel it because I didn’t want to. I didn’t want to have to deal with it. It was like I just wanted to keep going and move on and be like, Okay, it’s gone. It’s over with my, my mom had grieved, but not visibly in any way that I knew how to see like, like a healthy adult grieving. So, she kept it she’s she always kept everything in. And it was like, I’m going to put it away in this file cabinet. And I’m done. So that’s what I learned to do. I was like, Okay, I felt it. Now it’s gone. I’m just ignore it. It’s never going to come up again. I’ve learned that’s not true. It will come up. You can’t just file something away and expect it to be done and come back.
Victoria Volk 14:37
Eventually
Shandra Shultz 14:38
Eventually, yeah. And sometimes usually in the worst possible time in moments. So, if you’re like, Oh, well, darn. That’s there.
Victoria Volk 14:49
And quite often after we’ve experienced another loss, and everything floods everything else comes back up to the surface.
Shandra Shultz 14:58
Yes. And that is what kept me as using that is what kept me abusing drugs and alcohol because my dad died when I was 21. And then, after I had my daughter at 22, I found myself in a really abusive relationship. And I had a really close friend who was like my reason for like getting out of that relationship. He died right after my birthday when I was 23. In a very traumatic way. And then again, I didn’t deal with it at all, like I just tamped it down started using, I’m not gonna, I’m not going to do it. And then when I was 25, my other best friend, both like brothers died in another traumatic way, it all rushed back to me. And I said, Nope, not dealing with it, tamped it down again. And it just kept going like that, when I would have traumatic things, the loss of animals, the loss of people in my life, then when I lost myself, that was when I finally had to start actually looking at it and start feeling it and dealing with it. And it’s funny. Because this Pat, like two weeks ago, I had had been originally scheduled to be with you. And I ended up losing my cat the day before he ended up dying of kidney failure. And it was one of those things where it was like, it smacked me in the face so hard. Because I was no longer, I’ve been sober for nine years now. And I wasn’t going to misuse or abuse anything. So, I was like, Okay, I’ve got to feel this. And every single solitary grief that I had, for 38 years hit me in the face. And it was like, Whoa, that’s a lot of grief. So, hey, thank you, I appreciate that. It was it, I kind of look at it as like an empowering lesson, because it allowed me to finally feel it all. Apologies. It allowed me to finally feel it all. Something that I’ve been hiding from for years. So, every traumatic event, every grief that I ever felt, it was like, I had to feel it finally, and I had to do it in a productive manner. I couldn’t let myself you know, hide it anymore. And it’s so funny, because it was at that moment that I realized how much healing I’ve actually done. Because I looked at my husband and I said, you know, I know that. In society, they teach us they show us on TV, they write it in books, that if you have a traumatic experience, and you’re in a relationship, go have sex. But that’s a bandaid. And not to discredit the feeling better, or the being intimate and actually like connecting with someone say, Oh, I’m happy, I’m alive. However, it’s that we don’t allow ourselves to fully feel that grief. And we shove it, we shove it away, we mask it, we do something with it. And in this moment, I looked at him and said, we can’t do that we have to feel this pain was like a child to us, we have to feel this pain.
Victoria Volk 18:11
Well, and what do we do when we’re doing that? We it’s this fear of connecting with ourselves. I think so many of us when we’re deep in grief, we almost detach ourselves from our hearts and our emotional selves, or it’s, we can’t even we aren’t even comfortable in our own skin in our own bodies. And like you you just alluded to, like, every, almost every conversation I have with people on this podcast, it’s like all of my guests get it, you really get it, you really get that these things that you’ve learned growing up have not been helpful on how we are taught to process and treat grief that we have in our lives and loss experiences. Because we’re not we’re taught how to acquire things, but we’re not taught what to do when we lose them.
Shandra Shultz 19:06
Yeah, definitely. That’s so true.
Victoria Volk 19:08
Yeah, that’s why I’m so passionate about Grief Recovery and in the work that I do, and that’s why I started this podcast for the educational piece that you bring home for people that you’re not a pile of mess on your floor and when you are that’s okay. But then you’re honest about it. Like Be honest with yourself about that. And what you need and congratulations on staying sober nine years. That’s incredible. So what did it look like for you these past two weeks? What have you been doing?
Shandra Shultz 19:46
Well, the first thing that I’ve noticed is that there is a part of me that doesn’t want to let me have feel it like there’s still this part of me that’s like no, I don’t want to go there. It’s unsafe. Don’t feel that like don’t know and I’ve So I found myself like having this like internal battle with I’ve come to know, as my adolescent, because it’s my, it’s the adolescent or the ego self. That is like, no, no, I’m just gonna, we’re gonna skim over that we’re just gonna go and do whatever, let’s, let’s scroll on our Facebook, let’s do this and, and I’ve had to, like, really just hold space for that part of myself and say it’s okay to have these, this, this fear of feeling. But it’s, it’s feeling that’s going to allow you to not have to have fear anymore. Because once you allow yourself to feel the feelings, it’s gone. Yeah, it might come up again, when it gets triggered. And the more you work on it, the less it it hurts. That is true. And I truly believe they say time heals all wounds. Yeah, as long as you’re actually willing to acknowledge that that wound is there, and you’re willing to shine some light on it. Because if you don’t, then it’s just going to kind of sit in the shadows. And eventually, it’s like a tea kettle, it will tell you, it’s there.
Victoria Volk 20:58
I’m gonna piggyback that, because that’s actually one of the myths of grief is Time heals all wounds. Time does nothing but pass. So, but you alluded to, it’s the action you take within time. Yes, is what heals action at time itself. But the action, so yes, thank you for bringing that up.
Shandra Shultz 21:19
Yes, of course. Yeah. And that’s, and that’s so true. Because, you know, they say just like, I think about my mom, and she’s been single now for 17 years. And to this day, I love my mother immensely, she is one of my biggest heroes. But to this day, she still says that she’s married to my dad, she’s she’ll say, I’m married to a dead man. And like, that’s because you haven’t allowed yourself to actually feel the grief of what it is that lost, you got stuck back then. And there’s no judgment for me on that. It’s just the truth. It’s what she did. And I’m like, how, you know, living a half life. To me, the way that I’ve seen is like, she’s happy, but there’s still a sadness there. Because she’s never fully allowed herself to feel the sadness of that loss. And I’m sure that there’s much loss compared to more than just that. That’s just the most recent. And then of course, there’s what I went through, you know, in how she felt like, she lost me. So it’s, it’s interesting, because, yeah, time hasn’t healed that wound for her, because she’s not done anything with it. She’s just kind of, okay, it’s there. I’m gonna go, I’m gonna leave it there. And that little filing cabinet locked up.
Victoria Volk 22:44
And I ask how the communication has been between your mom and us. And during all these years of, you know, but you kind of were struggling yourself. But yet, you know, the, the ripple effect of that impacted her life, of course. So how was the the communication then around that?
Shandra Shultz 23:05
Yeah, so interestingly enough, there, there really was not ever a lot of communication around the loss of my dad. I didn’t even actually know much besides the fact that he had cancer, and he was dying. That’s all I knew. They never told me it was like, protect her, keep her safe. She doesn’t need to know this. But that in and of itself actually led me to rebel. Because it’s like, at 18 years old when you find out your parents sick, and they don’t want to tell you anything. And they say, oh, no, no, we’re gonna be fine. And then you’re seeing especially as someone who’s so empathic, like myself, I’m literally watching my dad and seeing him waist away. I’m like, No, he’s not fine. But why won’t you tell me. So, there was a lot of a lot of disconnect there. And we and when he did pass, we just kind of left it. Like, occasionally we would talk about him on a holiday, or something came up. But for the most part, we never really brought him up until last few years. last few years, I’ve talked a lot more about him. I’ve talked a lot more about my own grief. I’ve allowed my mom to know how I was feeling around things. And that has been probably one of the most healing things I feel that we’ve gone through because when I went through my accident, and she didn’t have the daughter that she’d grown up, no, you know, grown to know and all of these things. It really caused a rift in our relationship. And it took me to speak to the ripple effect. It took me actually going and doing the work on myself. And the more I showed up differently than she started showing up differently. And so now she’s a lot more open and the communication between us is amazing. And we don’t talk as much we used to talk every day like ours. However, when we Do talk, it’s meaningful. And we do spend time and though I do know that it’s challenging for her, because even to the point of like, when I told her I was changing my name, it was like, Oh, so you’re not that you you once were. And it took her probably about a year and a half to actually start not screwing up. Like she would call me by the name. She called me by for years. And then I’m like, Mom, this is my name. And then I let her I let it go for a while. And she would screw up and I’m like, Mom, this is my name. And finally, it was like, okay, and I and I told her, I said, Look, I’m legally changing it like, but it has, I’m honoring the me that I once was by using my first name that I was born with as my middle name. So it’s still part I’m still here. It’s just I’m different. I’m healthier, actually. Like, I look at the mean, before the accident, I’m like, Man, I was really unhealthy. And I was on, I was actually probably on the road to relapse. So, the accident really saved my life.
Victoria Volk 26:12
You know, in the last, I think it’s only been the last two weeks add has been years as the second story of name change that I’ve heard. Oh, wow. Yeah. And that was on another podcast, I had a guest by the name of Victoria Shaw, on my podcast. And on her podcast, she had a gal that does numerology readings. And she had changed her name. And had spoken about that and talked about the significance of, of our name of our birth, birth given name, and the self identity that we kind of have either a good way or a negative way. Yeah, imagine with life experience things. You know, we can change how we feel about our name. I happen to I actually changed my name to I didn’t change it, but I go by a different name. I was always Vicki growing up. Everyone always called me Vicki. Except when I upset my mother would be Victoria. When you know, the first middle. Yep, stay the whole name when you’re in there mad? Yeah, I go by Victoria now. And it just feels it feels more fitting for me. So I resonate with that idea of, you know, it’s almost like a coat we put on. So, can you share a little bit more about that?
Shandra Shultz 27:41
Yeah. So, it’s actually funny that you mentioned that like, how growing up you changed it from Vicki to Victoria, because growing up, I was Nikki. And then in high school, I was like, Nope, it’s Nicole. And then after that, I actually went by another name when I was partying. So like, I had two names. And then I went back to being a coal before the accident, and after the accident, I actually shortened it to an a nickname for Nicole Coley. Because it was like Nicole didn’t feel right. It just didn’t roll off my tongue and feel like who I was. So I was like, Okay, I’ll go to Cali. It’s really interesting. But then it just sort of shifted into Shaundra. And that’s when I took on Chandra Nicole. And it was interesting, because for me, it was a very, it was a very smooth transition it always throughout it, because now that I do remember why I would go by different names throughout time. It was just a very smooth transition. Like, even as a child, I never felt comfortable with Nicole, or Nikki, or any of that I hopped around spellings, all of that. So it just never sat with me. It was like, okay, and it’s funny, because my mom actually told me like, they were thinking about a completely different name before I actually showed up. Like, they planned out all these other names. And Nicole was not even one of the names. It was supposed to be Katrina. I’m like, well, I could have resonated with Katrina more than I could, Nicole, but okay. And it was but it was interesting, because when I when I my husband picked up really easily on calling me Shaundra um, and it was it was even, you know, even my friends, a lot of them have really just been, there’s some that still try to call me by the name that I was and I’m like, No, that’s not my name. Like I would appreciate it if you call it me this and it’s also funny because like, I get a lot of people calling me Shandra and I’m like, No, it’s not Shandra ich Andhra. But I knew like Nicole would have been a lot easier, right? Yes, exactly. It really was it was like um, and it’s interesting though, because at the beginning when when there were certain people in my life that I was not opposed to them calling me my former name or by misc. Missed that saying the name I use now. And then as time moved on, and I was really feeling more and more in my identity of Shaundra, it was like, No, I’m not going to accept anybody not saying that, right. So like, I’m going to, I’m going to correct you in a kind way, but I’m going to correct you and no, this is the name. And I also have reversed it. And I will always ask anyone that I’m speaking to, what would you like to be called? Because I can understand, like, not being called what you want to be called. It’s it to that effect. Actually, I recently just saw a post I made about two years ago about transgender individuals and their, their dead name versus the name they choose their choose. And I was like, why is it that we have such a problem calling people the name that they asked to be called? Like, why? Why do we have such a, and it is it’s about identity as we get to know someone as they are. And we just expect them to continue being that person. So whether they change their name, they, they just they realize that they are in the wrong body and are finally fully expressing themselves in the in the way that they want to be seen. Whatever it is. We struggle as a culture as a society with accepting the people knowing that they know who they are over who we think they are.
Victoria Volk 31:15
Yeah, a lot of projection.
Shandra Shultz 31:17
Oh, yes. And it’s so interesting, because I myself, I am a Celtic, pagan. And I look back on my ancestors, my Nordic ancestors and the Vikings and a lot of the the older tribes type. They didn’t choose names for their kids, they actually waited a couple of years to let their kids personality start to show up and then found a name for them. So, they would just call them cute nicknames. And then the kids got to choose themselves.
Victoria Volk 31:47
I think you also did.
Shandra Shultz 31:49
Yeah, I did. I did. Yep. That’s exactly what I did.
Victoria Volk 31:54
It’s almost as if, like, it’s this. You lived you. You experienced the life into your name.
Shandra Shultz 32:03
Yeah. And it came to me in a meditation. So it felt right. I was like, oh, okay, cool.
Victoria Volk 32:10
I love that intuition is, our intuition is Oh, is speaking to us.
Shandra Shultz 32:15
Yes, it is.
Victoria Volk 32:18
So, there’s another last, though, that you haven’t touched on yet that I know that you put in the information you sent to me? It is with your husband?
Shandra Shultz 32:32
Yeah. Yeah. So, he was in the military as well. And about four months into our relationship, he suffered a pretty big brain injury. He was playing for the military lacrosse team and took a 75 mile an hour bowl to the face. Now he had his helmet on, but it broke his helmet and still hit him and knocked him down. And it changed him. And he was no longer the man that I first met. And over the course of the last few years, it his personality has completely shifted as well. So he’s very much there’s there’s things that I’ve looked at him like, Oh, there he is. And then I look at and I’m like, but it doesn’t, it’s kind of like, it’s, it’s, it mirrors in a lot of ways my journey of how I came to be me, with him coming to be him, because we, we was probably five months difference between when I experienced my brain injury, and then he experienced his. So it was like, we were kind of on concurrent paths of healing. But we were healing in different ways. And it was, it was very challenging, because a lot of a lot of his trauma that he had not known about started to show up. And it really he he ended up going, I went from being his wife to being his caregiver. And I had to put wife on the back burner. Because he wasn’t the man that I mean, it didn’t feel good in any way to be in the role of wife with him when he himself was still very childlike. And thankfully, he’s recovered to a point that he’s not as childlike. There’s still times when he needs me to remind him because he can’t remember things he doesn’t know, you know, medication or me handling like doctors and things like that. But he has done a lot of healing, thankfully, to a point where we can actually start to be partners again. That was really I was I was afraid I was never going to get that. I was afraid that I had lost him forever. And that was just going to be one more grief that I’d have to experience and accept and continue to survive through.
Victoria Volk 35:01
But it’s still grief. Right? Because it’s not it. You know, in Grief Recovery Institute, we the definition of grief is the loss of hopes, dreams and expectations and anything we wish that would have been different, better or more so. Yeah. I mean, I’m very happy to hear that he seems to be healing. You know, it’s coming along, at the same time. Don’t minimize that. There’s still that, you know, you don’t want to minimize that. There’s still that grief there that. Yeah. What could be your what? You know, we don’t want to start we don’t know, stay stuck there either, right?
Shandra Shultz 35:39
Yeah, I totally get that. And I actually did for a while because I’m in the process of him having this personality shift. One of the things that shifted was he realized that he was polyamorous, and that he desired. While having a stable and loving marriage with me, he desired having other partners, not just sexual, but like emotional partners. And when he came out to me with that, it was literally, it like rocked my world, because I’m sitting here going, we had planned our life a certain way. And not only had I lost a lot of that, because of his brain injury and how he changed. But now I’m like, Is this even what I want? Do I even want to be with someone who wants to be with more than just me? Like, like, all I literally, I’ve said, I said to him so many times. You can’t tell me that. One of the things he used we used to say when we first met is that while we may have had firsts, we were each other’s last. And then after the brain injury, and he started to shift, one of the things he was like he actually I remember him saying this to me sometime last year after he came out to me about being polyamorous is he said to me, as long as I’m coming home to you, at the end of the night, that’s all that matters. I may experience my last call somebody else. But if I come home to you, and you’re the person that I end up, you know, passing next to your still, that’s me, and I’m like, okay, but no, because we said we were going to be each other’s last. We said we were going to do XYZ, we said we were going to do all these things. How can we do that now? It felt like I was losing us. And in a lot of ways I had because of circumstance. And so this last, and then of course with COVID, and everything, it was kind of like it was kind of a little miracle, because it was like, Okay, now you can’t do that right now. So, we got to figure this stuff out between us, and then get to a good place. And thankfully, I’ve used COVID for that for sure. To really help us like heal and get on a good path to where I’m like, You know what, I don’t feel a lot of the grief that I felt what I realized is he was so much like my dad and I was kind of looking at him to like fill the role of what I missed growing up. And he filled it and then all of a sudden it was gone again. So retriggered all of that like traumatic. There one day gone the next. And so it really took me on this journey of having to dive really deep inside myself and find out. Okay, what’s showing up for me? Where’s this coming from? How can I? How can I heal this so that it’s not affecting me daily, day in and day out? And I can actually have the life that I desire living.
Victoria Volk 38:23
So how have you done that?
Shandra Shultz 38:26
Oh, so a lot of parts work a lot of inner child work. A lot of energy healing, too. As I’m sure you’re familiar with being a Reiki Master it energies, me everything and realizing that there was so much stuck, like I had so much and actually in 2020 is when I fully remembered all of my life. Like it was it was just like in an instant click. And it was like, Okay, it’s like and I know that it wasn’t an instant. I know it was it was all the the six years of healing that I had gone through all the energy work all the inner child work, everything. But it was just like in a moment. It’s just like one day it just poof, it made sense. And I was like, Oh, okay. I’m here now. And I remember now that I remember I can actually like, it felt like coming home to myself. It’s really like the best way to describe it. And it was like, Oh, now I understand. Now I have context. It’s so funny because it felt for the first. The first six years it felt very much like being a child. Because I couldn’t remember I like I would have things come up and I was like, I don’t have any context about this, what the heck. And then I’d have to go in and do some healing around it. And then I’d find the context. I was like, oh, okay, and that was like, kind of like updating old computer programs. It’s like, hey, now I understand why that’s happening. Let’s let’s update this. This is really what’s going on in the year 2020 Or the year 2021. So, it’s been a lot of that.
Victoria Volk 40:04
It’s like you have this loose thread in a blanket, and you just keep pulling and pulling and pulling and pulling until everything, you know, and, or likewise, it’s like you keep creating over and over just evolving yourself and recreating yourself. And yes, its path to self discovery is really what it is. And I say it all the time. But grief is cumulative. And it’s cumulatively negative but but healing. Healing is cumulatively positive.
Shandra Shultz 40:39
Oh, yes
Victoria Volk 40:40
Every step you take everything, you’re doing all the modalities, you stack them up, you bring them together. And yeah, like very much like you like it’s this. I’ve had stuff come up that I didn’t even know through doing Reiki work. It’s in a phenomenal addition to my life. I it found me I had no idea what the heck it was. Even had a session and I went and got certified Reiki what level wanted to and then I went from my master, and then I added on Corona. And it’s been, yeah, it’s been a phenomenal addition to my life, as I see in yours as well.
Shandra Shultz 41:28
And to that part, it’s so funny because what I realized in my mom, when I went and got Reiki certified, I did the full, one two and master teacher in a six-month, timespan, probably less than that because you need the 21 days, I literally only let myself do the 21 days in between. And then I went and got the next one. And one of the things is my mom actually said to me, she’s like, well, you realize as a child, you used to do this, you’d go and you put your hands on people and tell him you’re sending them love and light. And I was like I did. So I was a healer as a little kid. Except back then I didn’t understand that. It wasn’t my energy because I was always depleted. I was sick so much in my childhood. And I never understood because they would get these random weird things happening. It’s like, what is she? What? How is she getting so sick? Her body is completely fine. And all of a sudden, she shows up sick. So it’s taking on other people’s stuff. I didn’t realize it. So, when I became attuned, I was like, that was like, Oh, I can let it all go. It’s not mine. It’s source coming through me. Okay, that’s cool. So, it really it started me to allow me to start letting things go that weren’t even mine that I’ve been holding on to for decades.
Victoria Volk 42:37
Same, same, same, same. As a kid I needed so much sleep I cuz i There are so many pictures of me I don’t have a lot of pictures but like three fourths of the pictures I do have which fitness ziploc sandwich bag or me sleeping. And there’s actually one of my most favorite pictures of me and my dad, he was already sick or had been diagnosed already. Because he it’s he was staged for when they found it. But there’s a picture of me in my like Doctor garb I have a blue mid my Garfield long pajama gown and I got my blue cab and my got rubber gloves on. And I’m like, on my dad’s back, and I’m like, like playing Doctor trying to fix them. You know? So your your share there. Really, that sparked that memory in me. So thank you for that. But so in looking in what you do, like so I’m imagine like myself, everything you’ve experienced has been just like the stepping stone. It’s like the next natural progression to the work that you’re doing. Yeah, I would say the work that I do as well. So, tell me more about the work that you do.
Shandra Shultz 43:50
So recently, I’ve actually been trying to find a way to like, meld it all together. Because it feels like it’s like I spread it out too much and like and of course that’s the that’s my finger brain going you need to have specifics. Everybody’s got to know exactly what it is you’re doing. And then I think about like my intuitive self and like now you don’t you don’t they don’t need to they you can describe it as best you can and then let them experience it and then it goes from there. So I’ve recently started shifting what I what I was originally calling my coaching sessions are now I called Soul birth sessions. And so what I consider myself is to be like a spiritual midwife to help women transform their selves into the life that they truly desire, like the life that they really want rather than the life that they were told that they were supposed to have. Like I remember growing up, you’re going to grow up you’re going to go to school, you’re going to meet someone you’re going to get it and you know get a job meet someone get married, have kids and die. That’s it. It was like that doesn’t sound very fun. That’s like not a very fun existence. Like what? So, in uncovering what I truly wanted to do for myself and be of service to others and really find my truth and my authenticity, I was able to start seeing that I actually am really good at guiding others to do that, too. So that’s, that’s what I’ve been working on, I’ve been working on creating this soul based business where I actually guide others to do the same type of stuff that I’ve done for myself.
Victoria Volk 45:25
I love that. So, what is giving you the most joy other than the work that you’re doing now, what is giving you the most joy and hope for your future?
Shandra Shultz 45:38
So, for sure, I have to say my daughter, even though it’s been challenging, because they themselves came out to me as non binary, and as a lesbian in the last couple of years. So, shifting and like realizing that this is what my mom went through with me is like what I’m going through now with my daughter, and yet having such joy and such happiness around the fact that this, you know, teenage kid feels good to be able to be themselves. Like, that gives me so much joy that I loved them enough that they felt comfortable to truly be themselves. Like I, as much as my mom loved me, I didn’t feel comfortable being myself growing up, I had to hide who I was. And to know that I have this kiddo that I’ve actually done a really great job raising, and that they feel good about being themselves enough to the point that they chose me to be the one that came out to first. And they’ve always been just like, amazing. And so that really brings me a lot of joy to know that I’ve done a really good job as a parent. And then being able to be creative. My family is just part of that joy, of course, but then being able to be a creative individual. I’m very artistic. And I love to express that art in whatever ways show up for me. So that’s, I’ve been really focusing on a lot of that creative finding that creative joy again, so that I can actually live from that place. Because I for a very long time. I didn’t live there. In fact, I just kind of shut it down.
Victoria Volk 47:21
I love that that’s something which to get back to more of his just this creative play. Just following the curiosity, right, I talk about that with a lot of friends I have is just follow the curiosity wherever it leads you. And I love that you brought up about your child and how Yeah, I mean, to create that space for someone else to really be themselves. And obviously, your wonderful example of that of living your, your truth. And we really want to be in this world what you want to what you want to give to others. What were what is one tip that you would give someone who’s hurting today?
Shandra Shultz 48:13
One tip, I feel like the the biggest thing is, don’t judge yourself. Allow yourself to feel the grief, like in however it shows up. But also, don’t live in that like find a way to move through it like it’s okay to me personally, whenever I have a loss, specifically one word, someone who’s passed on, I tried to focus remembering all the good times that I had with them, because it’s those good times. They don’t want us to mourn them, they want us to remember them. Like that’s what I feel is like being able to bring the joy that they brought to you to continue to hold that and focus on that focus on the joy of having the of what it was such a joy to have them in your life. Like I think about my cat like, yeah, it was sudden, and I hated it happening. But then I think about all the joy that He gave me. And he wouldn’t want me to sit there and spend hours and hours and weeks and months and years ruminating on the loss of him. He want me to live life for him. And to that and that’s actually something that my husband and I promised each other when we got married is that instead of how so many people would say I’ll die for you. Live for Me. So we promised that we would live for each other. So if anything ever happened, we wouldn’t stop living we would continue on in their honor. And so that’s how I that’s that’s the advice I would give is honor that. Honor and honor the relationship you had with that person by remembering all the joy.
Victoria Volk 50:02
Can I follow that up with the relationship you had with your father then if he if it was kind of a challenging relationship? How did you do that, then?
Shandra Shultz 50:14
Oh, well, it took me a while I had to I it’s funny that I look back on it now and go, Oh, I was living the stages of grief over like many, many years, because I was angry for a really long time. And then, after the anger, I started realizing, like, how am I living my life to honor him? Like he wouldn’t? What was it that he wanted me to do in life to achieve in life. And so I started living it from that point of view. And then once I started doing the work of the spiritual work, and really working with meditation and things like that, I went in, and I actually called on his spirit, and I, and I had conversations with him, and how proud he was of me, and how, you know, just how I’m living life from this joyous place. And that’s all he ever wanted. That was able to allow me to see that everything that happened in our human existence, when we when we pass and we go into the spirit world, that it’s gone, it that we leave that like we leave it at the door just is like, Okay, I’m gonna check that here. I don’t need it anymore. I’m in spirit form, everything is good. You know, so it’s like, I was able to go in in the neck and talk to him and really have those connections and, and find out how much he truly loved me and really feel it in my, in my everyday life of like, seeing little signs from him that, you know, I look and I see Oh, my mom. And I used to say when, after my dad passed, we saw crows everywhere. So seeing a crow, I’m like, Oh, my dad’s thinking of me today, smelling his cologne, which I how I remember the scent of his cologne. 17 years later, I have no clue. I haven’t smelled it in 17 years. But if I’m in my room, and all of a sudden they smell it and like, Oh, my dad’s here. He’s watching over me. He’s making sure that I’m okay.
Victoria Volk 52:14
You make me think of I just got turned on to this Netflix Docu series called Surviving death. Have you heard of it? Haven’t? You are speaking the language of what that’s all about? Wow. It’s a six part Docu series, I think you’d be interested in watching that. But there’s yeah, there’s one that’s actually called Signs. But I almost wonder sometimes this is just my own inner thought pondering that if we had like a very conflicted life, in our human form. Is that somewhat still resonant in our soul form, or spirit form? And that’s one thing that you made me think of, too, is I heard you talking like, and I don’t know, this is, like I said, this is just me, my inner dialogue is that he’s I think that’s why sometimes spirits, because I do totally, absolutely believe in ghosts. And that sometimes they just have to make their presence known, or they just they cannot move on in that they got something unfinished, you know?
Shandra Shultz 53:33
I totally agree with you on that. Ever since I was a little kid, I was always very sensitive to the spirit to the spirit world. And there are definitely times when if it is a, like a highly traumatic situation that they passed in. Or even if it’s something where they feel a lot of grief, because they were leaving their family, and they didn’t want to or whatever, I find that it’s those highly emotional, whether it’s the, quote, good or bad emotion, but it’s the highly emotional times. That’s when sometimes the spirits will get stuck. And I feel like those that have been able to what’s the word I’m looking for? Like, they don’t have any unfinished business, like when they talk about it on movies and things like that, like, oh, he has unfinished business. Yeah, like sometimes we do. Like we, if we if we, like my best friend who felt you know, full 40 stories to his death, like he had a lot of unfinished business. Like, I’m pretty sure he was not ready to go. And so I’ve, you know, I’m sure that there’s times when people feel like, Oh, hey, like, I can actually feel His presence and it’s more of like, not not in a way of which I’ve like I’ve moved on, but more of like, I’m kind of still here. Like, I’m like, there’s something that’s unfinished for me. And I feel like as someone who I consider myself a medium, I know that if you can, sometimes those people those spirits just need to let happen. If someone has a beard goal is to be their voice and let them know. I’m okay. I loved you. I meant to tell you this, I never got to and then the moment you that’s done, then they can peacefully go on to their next existence. I truly believe that to be the case.
Victoria Volk 55:15
Yeah, I think this is a like, veered into a topic that we could probably talk for hours on probably. Yeah, it’s really deep. But I love deep conversation. Yeah. So what would you say overall, that your grief has taught you?
Shandra Shultz 55:35
To live
Victoria Volk 55:36
That’s good.
Shandra Shultz 55:39
Thank you, I truly feel as if I was given a second chance. And so many of us don’t get that chance, at least not in a, like we have an accident. And then well, we don’t get that chance anymore. So I’ve really taken this as, what do I want to do? How do I want to live my life now so that I don’t worry, you know, when I get to that point, and finally being old, because I know I’m going to live to a very right, right old age, I don’t want to get to that age and be like, Man, what did I do with my life? When I look back on on the me that I was before the accident, and I realized I had kind of come to that place, I was very, because I was so traumatized with all that I had gone through because of everything, I had just come to a place where I was like, You know what life isn’t good. I’m not really ever going to have what I want. It was just a very depressing, very down dark place. And I didn’t think it could ever change. And it did. And I’m grateful for that. Because what it did was it woke me up to realize that I was so stuck in all of the grief and the loss and that I didn’t focus on what I actually have right in front of me, which was this amazing life that I could literally choose to do anything with. So long as I allowed myself to, to do so. And part of that in order to do that is I had to heal all those all that was keeping me stuck in that in the darkness. And now that I’m like, Oh, I see that. I choose to say I want to live a different life, I want to be happy, I want to, to experience everything that I’ve set out to experience and it doesn’t know it, you know, I just I want to live. And then fine. It’s kind of funny, because that actually goes to the point that I used to make to a lot of people I said the meaning of life is to live it. Like everyone wonders what the meaning of life is. It’s to live it to experience it to to enjoy it. That’s the meaning of life. That’s what I’m choosing to do.
Victoria Volk 57:45
Amen. Can I asked one more question? And I don’t know that we completely answered it. And I want to share anything good that you have to share around the topic. And it goes back to your addiction. And what was the was there a defining moment? Or what was the one thing like? I guess 12 years is a long time. So what was the one thing or was there one thing that got you out of that?
Shandra Shultz 58:21
So, it’s funny because during those 12 years, I did try to get sober numerous occasions, and I even stayed sober for you know, six months to a year sometimes. But then I’d always have something come back and smack me in the face. And what it was at the very end, I remember this it was I had gone to a I’ve been sober for a year almost. And then I met some friends and my mom ended up I was I was away on a cruise that I had been wanting to go on my entire life. I was a huge Backstreet Boys, man, I will not deny it. I’m I will own it. And I got to go on the cruise. The last day of the cruise, my mom slipped and fell and broke her knee. And I my daughter had been with her and when my mom when my mom called me and said to me, are you sitting down when I was in the airport and told me like the first thought was I thought something happened to my daughter. And she was like, No, she’s fine. And then it was like, okay, and she’s like, it’s actually me, and it triggered back everything. All of that great for my dad or being like my mom or like almost lost my mom all these things and I was like, I’m going to be alone. And so I lost the sobriety that I’d had up to that point. I started drinking and doing drugs again with some friends. And I went out on New Year’s Eve, and I woke up probably 12 to 13 hours into the new year. And I didn’t know where I was I didn’t know the persons that I was in. I didn’t know. I didn’t know anything. I later came to find out that they had actually went joy riding with my car, like all of these different things. And I was like, I sat up and I was like, What the hell are you doing with your life like you? We’re you’re sabotaging yourself, you’re like you’re creating more of this existence that you say you don’t want because you’re afraid of dealing with the truth. And the truth is you’re unhappy. It was like, Oh, okay. Well, if I’m unhappy, what do I knew need to do in order to get happy, and I got really quiet. And I heard myself say, you need to get sober. I heard this voice and it sounded like my dad, honestly, saying, you’ve got to grow up. You can’t be a kitten. You can’t continue to live in this victim, this victimhood that you’ve created for yourself. You need to be there for your daughter. And it was in that moment when I realized like, what am I I did to my daughter, inadvertently by being an addict what my dad had done to me by being a long haul truck driver, he left me alone for seven years, or over seven years. I rarely ever someone that was doing the same thing to my daughter that my dad had done to me. And it was in that moment that I realized, what am I doing? My creating another generation that’s going to go through what I went through, is that what I really want to be doing, I realized how unhealthy I was, and that I couldn’t keep doing what I was doing. Like it wasn’t healthy, I wasn’t healthy. And if I wanted to actually be there for my daughter, and and make 30, I had to get sober and like actually get sober and completely walk away from everything that allowed me to continue to be there. And so I did I actually picked up I had not I have not touched a single thing since that day. And I walked away. And I said, Okay, let’s, let’s figure out how we’re going to heal. Let’s, let’s head straight into the darkness now. But let’s do this in a constructive manner. So that’s what I did.
Victoria Volk 1:02:24
Thank you for sharing that and congratulations again.
Shandra Shultz 1:02:30
Thank you. And I think the thing that’s most important if I can, if I can is to say that I look at myself now. And I look at the the girl who wasn’t sober. And I forgave her. And in fact, I told her, I was proud of her. Because I kept myself alive. For 12 years, when I when there was a part of me that just wanted to give up and die. I found a way to survive until I could learn to thrive. And that is so important is it’s okay to not it. It’s okay to feel like you can’t go on but find one thing that can help you to get to the point and just keep following those little, those little breadcrumbs and you’ll get there, but have grace with yourself. Like I had to have grace with myself and be like, You know what, I look at all of these things as they helped create who I am. And I’m happy to be the woman that I am today. And I wouldn’t change any of it no matter how traumatic or how, you know, lost, I might have felt it got me to where I am now. And I’m grateful for that.
Victoria Volk 1:03:41
I just really appreciate all that you’ve shared because I think it really just comes back to there’s one common theme. There’s one theme that I’ve kind of picked up on among all conversations that I’ve had, especially when it comes to addiction, and I don’t care what the vices is shame. Shame really keeps us in the dark.
Shandra Shultz 1:04:11
Oh, definitely. And the thing of it is what I also what I didn’t realize is that that shame is what led me to gain all the weight that I gained multiple times because I was afraid of feeling. So I felt shame in that I was feeling all these things. So how do you do it? You just shove the shame down. So I’m just gonna push you down. And that that was the thing is addiction if like you said it doesn’t matter what the addiction is because you can be a workaholic, you can be an you know, a drug or alcohol abuser. You could be an emotional or any other type of disordered eating. Like there’s so many different gambling all of these things. They all have the same root is that we don’t feel worthy of something and that’s where that shame comes in. I feel ashamed of I’m not worthy but we’re all worthy.
Victoria Volk 1:05:02
But what happened? Right? What happened? what’s at the root? What happens? Trauma is what happens, Grief is what’s left.
Shandra Shultz 1:05:06
Yes, exactly. And it’s getting to the core of those roots. And saying, okay, you know what, I’m not going to, I’m not going to get down on you for feeling that way, I’m going to acknowledge this, this is what it is you feel this. And let’s honor that. And then let’s move on. And let’s, let’s find a way to heal the root. Because if we don’t heal the root, we can, it’s like putting a bandaid. And that’s what I did. I went from, I went from, you know, from drugs and alcohol, to sex, to eating, to gambling, to working to all these different things, because I was afraid of getting to the root of what was what was really pushing me. And then once I got to the root, it was like, Oh, well, that’s not so bad.
Victoria Volk 1:05:55
What we resist persists. And where our focuses is, where we are, and what have been some of the modalities other than energy work that you’ve that have helped you. And I really think you said, you think, I think you said meditation as well, which I’m a huge proponent of too. Anything else?
Shandra Shultz 1:06:18
So, I’m I, I’m a big fan of parts work, and specifically the modality that I that really kind of brought that around to me because I had a background in psychology and just forgotten some of it. And so it’s called the adult chair, I’m actually being certified as a coach in this modality. And what it is, is she basically broke down where things sit, whether it’s in the inner child, the adolescent or the adults well, and for the adult, it’s really the healthiest version of myself and the healthiest adult I can be versus a unhealthy adult. Because when we’re unhealthy adults, we’re really sitting in like adolescent and inner child stuff, just showing up with these masks. So being able to learn that I had these parts of myself that I needed to heal and going in and being able to, like update it like an old program and update the programming was really a beneficial modality for me. I also became trained in Akashic Records work. And then I have used other types of modalities that I’m not trained in, but that I’ve gone in and sought out like cranial sacral therapy, which was absolutely pivotal for really getting to be able to release some of the blocks. In my in my brain specifically, they use cranial sacral therapy a lot for head injuries, because it’s just, it’s a great modality to be able to really release some of the stuckness that happens. And the and the imbalance that can actually happen internally. I used the Emotion Code. So I’ve done some Emotion Code sessions, which I found were really empowering the Reiki energy, I think those were the main things that I did just a lot of the healing modalities and even Chinese medicine like finding holistic doctors so that I could heal my, what was showing up is like, actual physical things and find is it actually my body having something happen? Or is it emotion connected to the body? And it’s showing up that way?
Victoria Volk 1:08:38
Yes, and I don’t know, I’m sure I see this all the time in my Reiki sessions, where it’s grief manifests, and it manifests in what we do, how we behave, and how our bodies show up for us. Yeah, we almost feel like sometimes that we’re at battle with our bodies. Really, it’s upstairs, in our minds. Its where the battle really is.
Shandra Shultz 1:09:08
And that is so true. And that’s one of the biggest things that that I’ve learned is that if we ignore the emotion, it will, it’s like a little kid, it’s gonna keep poking at you and it will find a way to get your attention and a lot of times because emotions can get stuck in the body, it’ll show up it’ll manifest itself in the way of like pain or you know, so a lot of people who have for example, fibromyalgia, they if they go and do or which is I forgot, I’ve done tapping, EFT Emotional Freedom Technique. And so if you go and you do that type of work, where you’re actually allowing the, the you’re speaking it but also letting the body move it. Then a lot of times they find Oh, I don’t have that pain anymore. Or that thing that was bothering me if I haven’t been speaking my voice and I all of a sudden have, you know, thyroid issues. And I start speaking my voice and doing healing and then suddenly the fibroid issues gone. That’s what happened with me was like, okay, you know, so that’s it. It does, it shows up in our body in weird ways. And we were like, oh, okay, cool.
Victoria Volk 1:10:19
All connected.
Shandra Shultz 1:10:20
It is and I think as as I’m sure you knows a Reiki practitioner This is one of the first books that I found was Louise Hay is the the body heals itself. And she talks about that and that that connection of the body, it’s showing up physically, when it’s an emotion, or a feeling.
Victoria Volk 1:10:37
Yeah, she actually healed herself of cancer of a female, like believe uterine, one of the female organs. Yeah, that was actually one of the first books early on, I think, like in 2014, that I had come across my healing started, when I really started to dig into my own healing. And it creates ripples as, as, you know, our healing of ourselves creates ripples in our lives, as I know.
Shandra Shultz 1:11:08
It does, not only in our lives like or in our current everyday, even going back in generation ancestral, like, I’ve done some ancestral work with different modalities of ancestral, like, I think there’s like generational healing is one of the ones I did. And, like, when you heal yourself, you are literally healing up to seven generations back and seven generations forward. So, it’s like, okay, there’s there’s the incentive right there to heal yourself. You don’t just heal you, but you heal your family.
Victoria Volk 1:11:40
Yeah, yeah, that’s the thought I wanted, I think of, to come back to was when you take the time to invest in yourself and in your own healing, you break the cycle? Yes. Right, that cycle of that generational generational learning, which we talk about Grief Recovery, too. It’s all generational. Because we resort to what we know. And when we understand ourselves better, and we’re living in integrity with ourselves. changes everything.
Shandra Shultz 1:12:15
Yeah.
Victoria Volk 1:12:16
Is there anything else you’d like to share?
Shandra Shultz 1:12:18
No, I think that’s it. Thank you for having me. I really appreciate you taking the time on me on.
Victoria Volk 1:12:24
Absolutely. I love this conversation, I think. Yeah, there’s, we could talk for hours, I’m sure of it. I’m going to link to everything that was mentioned in the show notes, the different healing modalities where can people find you if they will reach out to you?
Shandra Shultz 1:12:43
So, I have a website called Igotthewoo.com
Victoria Volk 1:12:49
Clever, clever.
Shandra Shultz 1:12:53
It came about in after my my certification program, like we were on our way back. And she actually like I happen to say I got the wool in my friends. Like that’s you that is so you, that’s what you need to use. And I’ve just ran with it. So, um, and then I am on Instagram at Celtic healer Shandra. And I’m on Facebook is healings of light and love. So, we need to the backslash healings of light and love. And that’s my business page.
Victoria Volk 1:13:31
Perfect. And I will link to those as well. Thank you again, for being here for sharing your stories of many stories of loss. This is a beautiful example of all the different types of loss that we can experience in. I mean, you probably feel like you’ve lived like three lifetimes.
Shandra Shultz 1:13:56
Or more. Yeah. Yep. I say like I’m like a cat. I’ve got the nine lives and how many do I have to have?
Victoria Volk 1:14:04
Yeah, and to I just want to bring up to the just acknowledge the loss of your cat because hat loss and miscarriage are two of the most minimized losses. And, you know, regardless of the relationship of who it is, or what it is, there was a relationship there, and it deserves to be honored. And so that’s, thank you for bringing that up, as well as one of your losses to talk.
Shandra Shultz 1:14:34
Yeah, I’ve had a lot of pet loss so I’ve kind of learned to move through it but it’s also one of the things like I I’ve come to realize that I would not want to miss out on any of that. It’s just like every every moment that I have with all the different people like I would never want to miss out by not having that experience. And so it’s like in the moment it’s really sad to lose them. But that’s why I think back on all like the night with my cat I had them too. Nine years like I have nine years I can be by my side and just loving me and all that. I focus on that rather than focus on the loss. And that allows me to say, You know what, I’m not going to stop myself from letting another animal come into my life in the future just because I’m afraid of the loss because with animals of course, you know, we don’t get as much time as we get with humans, usually.
Victoria Volk 1:15:23
Thank you so much, again, for being here. And remember, when you unleash your heart, you unleash your life. Much love.
Addiction, Grieving Voices Guest, Grieving Voices Podcast, LGBTQ+, Mental Health, Suicide |
Angela Williams | Abused by My Mother, Homeless, & Heroin Addict to Ph.D.
SHOW NOTES SUMMARY:
Based on the experiences she had in the first decade of her life, Angela was destined for a life of struggle, and, as her mom declared – die with a needle in her arm by the time she was 16. This prophecy nearly came true more than once. Instead, she got her Ph.D..
A life of trauma, physical, emotional, and sexual abuse by her mother led to early motherhood, heroin addiction, looking for love in all the wrong places, and losing her son to her own mother who put him in foster care. It would take over a decade for her to get her son back.
As her book describes, she was a child that fell through the cracks of the system. And, nearly paid with her life for it. Her story is a hero’s journey where she paved her own path out of living hell.
Connect with Angela:
Victoria Volk 00:00
Welcome Grievers to another episode of grieving voices. This is your host, Victoria. And this week I have a special guest. They’re all special, because all Grievers are special. But this special guest is named Angela. And Angela is an author, a free-range researcher, independent podcaster and survivor of many horrible things in her words. And she is from Sydney, Australia. Welcome, Angela. Thank you for being here.
Angela Williams 00:34
Hi, Victoria. Thank you for having me. It’s lovely to be talking to you today. Well, you know, difficult but lovely. Yeah,
Victoria Volk 00:41
I know. It’s heavy stuff. And I have thoughts on that. Moving the podcast forward actually how I can bring a little lightness to all the heavy, you know. I think we need a little bit more balance in times
Angela Williams 00:53
Think of the cactus flowers, cactus flowers. They’re the theme in the shop. It’s and we find the beauty is hiding there waiting to just pop out. Yeah.
Victoria Volk 01:02
Yeah. And that’s actually where a specific question came from that I came to me today that I will ask you later.
Angela Williams 01:09
Okay.
Victoria Volk 01:10
All right. So, we just met just now, man.
Angela Williams 01:15
Yep, yep.
Victoria Volk 01:16
Yeah, no history here.
Angela Williams 01:19
I feel like we’ve clicked.
Victoria Volk 01:21
Absolutely, yeah, absolutely. I think that’s the thing with grief. It’s where we all experience it. On some level. And that’s the one thing that we nobody can run from.
Angela Williams 01:35
We can try.
Victoria Volk 01:36
You can try.
Angela Williams 01:38
Yeah.
Victoria Volk 01:39
And that’s what the education piece is all about.
Angela Williams 01:41
Yeah.
Victoria Volk 01:42
The work that I do. But what I do know is that your story begins when you were four.
Angela Williams 01:49
Yeah. So that that’s when I started grieving. When I was four, my father had was an alcoholic, and he died of hepatic cirrhosis. And so, I was four years old, my brother was three years old. And we found out a lot lighter that we actually found him at the time, but it was very traumatic. So, he died. And my mother had, we had been living with my two older brothers who I only met last year for the first time. And they had been raising myself and my brother, because my mother wasn’t very good at it. So then when he died, she just took us and left We went to a couple of different places. And she was incapable of looking after two human beings, but also very, very abusive. So, from she then told my brother and I, for a very long time that our father had died of suicide, and specifically told me any number of times that he’d killed himself because I was a naughty child. So it was, yeah, like I started grieving him 40 years ago, and part of grieving him was that that that gradual awareness as a child that my mother wasn’t like other people’s mothers, so she died on Halloween last year. And I never really liked my birthdays, because they were always really dodgy at home. And she somehow managed to time it so that she committed suicide on Halloween and was then buried on my birthday last year. So instead of going to the funeral, I made a podcast about the situation and so I’m now in this really kind of unique situation of grieving this woman who I started grieving 30 years beforehand, so yeah, she Yeah, my father’s. I probably told the whole story and you were gonna save it up for the whole interview, and I spurted it all out in one go. Yeah, that’s where it started. And that’s where I am now trying to balance all of the lies that she told me about myself and about my world and who I am and how to grieve someone. When it feels like to grieve someone, there has to be a connection, there has to be love or a link there. And it’s very, very difficult to work out how to grieve someone when you almost wish they’d never been born, you know. So yeah, it goes back a long way. And it’s really all flared up in the last year. But since she died, I’ve, my whole life has changed. It’s been remarkable from the day she died, everything got different and that’s why I decided to do a podcast to talk to people like me who are going to have to face this really complicated grieving process somewhere along the line. Lots of us are estranged now and we need to talk about that.
Victoria Volk 05:09
So, you mentioned that she kind of plucked you out of the life that you were living so and where you were and everything familiar. So, it wasn’t even just the loss of your father. It was the loss of yours. Whatever support you did have, correct?
Angela Williams 05:25
Yeah. We, we went from, I’ve only really found the details of this out in the last couple of years from kind of extended family members who I found gradually through poking at the Internet. She she just took us away we had, I was at school, my brother was in preschool, and we just kind of got picked up and moved overnight, she sold my father’s house, liquidated all of these assets, left his other children and his first wife with nothing, and then just took us and, and then we went through this series of living in tiny, isolated places like small flats, and we went to stay for a while in this weird Christian commune in the middle of like regional New South Wales, where we all farmed together, we had to leave there, after she got really violent with me. And when we left places, it was always bundle everyone into the car, pack everything up, and now we go. And then, so it was just, it was this horrible experience of not actually ever having, learning the basic human things. So, like, by the time I left school at 16, left home, I didn’t have any human skills, all I knew was how to be an abused child. Everything I’ve made since then has come out of recognizing the strength I got back there.
Victoria Volk 07:00
So, at the time to when you left at 16, and your brother would have been 15
Angela Williams 07:06
Yes.
Victoria Volk 07:07
She’s equally as you said to him.
Angela Williams 07:10
It was weird mine, it was gendered, very specifically gendered. women had one job according to my mother’s view of the world and men had a different job. So, my brother was abused, but in different ways we both kind of he was a lot of mine was really weird sexual stuff, and emotional abuse and yeah, kind of public humiliation and things but all linked to my sexuality from when I was like a small child she was offering to sell meet men and to auction off my virginity for a boat at the golf club. And she just thought this stuff was funny, she thought she was the funniest person in the world, and it was 1980s 1990s Australia, people didn’t step in with child abuse, we have a terrible history of what we’ve done to children in this country and things that have been covered up institutional child abuse and stuff. And nobody stepped in. People just assumed it was the mother’s job Oh, and so many people said to me over the years, a mother wouldn’t do that to her daughter, particularly the sexual stuff like a mother wouldn’t do that to her daughter. So, it was kind of I was always just trapped in all of these messages that she was giving me the really dangerous messages that then the rest of society was not challenging those messages not interrupting and saying hey actually that’s wrong. I am a little bit by psychiatrists likes to remind me I could have gone to jail for this one but I once ran up at a woman in the supermarket and slapped her across the head and told her to pick on someone around sides because I walked behind over three aisles watching her slap the child across the back of their head every time he reached for something and I wait to stand by it and ignore it because I was that kid that people stood by and ignored so yeah, she gave me a real put a fire cracker and to me that woman I had to be this is where I can read it. Let me Can it Can I just read that bit from my book? Yeah, so I wrote this book. It’s not about promoting this for everyone else that already told Victoria this, but I wrote this book and in this book I talked about it’s called Snakes and Ladders wonderful book, but in their awful awful book I lie It’s not wonderful. But I survived spoiler. It’s about it includes the the horrible things that my mother did to me and the dedication in this book, I wrote it. When I first started writing the book it says to my mother for making me the strongest woman I could be to my mother for making me the strongest woman. I could be all stop That’s what you do with it, you take it and you go, this stuff is intolerable. This is unbearable, you cannot live like this. And then you change it, you do something different with it. So I did something so different to what she told me to do. And now it’s like, right up until the day she I’ve been in therapy for 20 years, okay? 20 years with the same psychiatrist, you can do that in Australia. He’s been both billing me the whole time. It’s free. Because I’m really broken that so you don’t normally get that, but I’m pretty broken. He likes me. But you can get free therapy here. It’s amazing. I forget where I was going, I started talking about therapy. Does it every time you can take all of this stuff and make it into something different. And odd. That’s where I was going. The day she died. I’ve been in therapy for 20 years. And I thought I processed at all. But the day she died. I sat there and because she died of an overdose. She’s she overdosed we don’t know for sure if it was suicide, but it was a painkiller overdose. And that’s what she always said to me. From when I was so young. She said, you’re going to die in the ghetto with a needle hanging out your arm, Angela. And she said it was gonna happen before I was 21. So 21 was when I was like, Oh, I won that. Then 42 I was like, Oh, I got to double what she said, I totally won. But then when she died the same way she told me I was gonna die. Something dropped off my gaze, and I was able to see how much of everything she ever said about me. She was actually saying about herself. She was talking about herself with all of those things that she said to me, and just that moment of realizing she was finally dead. Let me just own the truth of myself as a person separate to that abuse. To like really step into being that strong woman that you have to be when you when you’re raised with all four things you have to be strong or die. As I tried to die with a needle hanging out my arm, I’m just obviously better at surviving. She thought I was going to be I gave it a good read hard go. Heroin is not the way to solve your emotional problems. I can say that 100% confidence, but I’ve gone somewhere different what she planned for me. And letting her go is letting that hold over me go. I am. I started my podcast after she died because after years of worrying about talking and being heard in the world, because she would hunt me down everywhere. She never respected my no contact. As soon as I popped up the social media accounts, she was there she would send requests through friends and constantly had some illness that I needed to rush to her side and comfort her. So, the poor people who had to email me about her finally dying, got that response of I am so sick of this. No, I am not rushing to her bedside again. And then she was actually dead and all I felt was relief. I already processed all the grief. I’ve processed the grief through the book and through the therapy and through making myself into this amazing, strong, capable human being. And I don’t regret not having contact with her. I don’t regret having kept myself safe. I don’t regret prioritizing my safety over her comfort
Victoria Volk 13:42
For the audience, it is Dr. Angela Williams. So, it’s an incredible story. What’s up?
Angela Williams 13:53
I said I’m comfortable in lecture mode.
Victoria Volk 13:56
Can I ask what kind of with doctor?
Angela Williams 13:59
Yes, yes, you can. I actually have a PhD in Creative Arts. I like to tell people that I’m a doctor of making shit up. I taught critical theory at university for seven years, which is all of those big ideas. We used to think about the world like philosophy so the feminism and the socialism and all the different isms and ologies. I taught a big first year class of around 300 students where we taught them how to do things like think and write essays and paragraphs and sentences. Let’s be honest. And so, I’ve given a lot of feedback. Oh, my favorite subject I ever taught was a I was just a tutor for this one. It was a third-year research project. So, the students got to write like a mini thesis, and I did. I was working with about 90 students helping them all make their own little mini thesis research pro at the end of three years of creative art, so there were across all of the disciplines visual arts, dance, and dramatic pin performance and all the rest of them. And including a couple of writers, creative writers, which is my field, they’re always the quiet ones sitting, they sit in a little clump in the middle of the room, and then the louder students get around them. But yeah, so I spent seven years wrangling creative art students to learn how to think while I was writing my PhD well, and after I finished my thesis, but my research was into how writing a memoir is like self surveillance, and we turned the lenses on ourselves to discipline ourselves into being more socially acceptable human beings. proved that theory, didn’t I? Yeah, so that’s what my doctorate is in, I think way too much. And I’m overqualified to do everything. But podcast turns out so yes, I’m technically an expert. They told me. Obviously, I am. Yes. Can I arrange my favorite bit of the book since we’re talking about me being a doctor? Here we go. This I didn’t even write this bit. Neither did my publishers. This is by an Australian author called Anna crying. Sorry, my microphones there. Oh, this is why I started a podcast. Snakes and Ladders is devastating and brilliant. Williams is a tremendous writer, her insight into power and punishment is brave, honest, and revealing. Thank you, Brian. Yeah, so that’s what kind of doctor I am. I am really good at looking at stories and looking inside them and behind them and underneath them. I did University and therapy at the same time. So, I just think all the time.
Victoria Volk 16:51
I think it’s absolutely incredible how I mean, you’re the epitome of the heroine story. And can we circle back to when you were 16? And like, come back to like the time in between now, if the time is between?
Angela Williams 17:11
Say, between 16. And now?
Victoria Volk 17:14
Yeah, like, how did you get from a needle in your arm to a PhD? And like, how did you quit? Like, you just like, kicked heroin, like, I’m done.
Angela Williams 17:24
I’m, I’m really smart. I didn’t know that when I was a kid. I thought that I was creative, which was an insult in my family. So we went to a Pentecostal church, and I had been reading it, my job was to work in the bookshop. That was my volunteering gig. And I read all these books about heroin in the church, bookshop. It took me about 10 years in therapy to realize that what I had done was put those messages together and worked out the consistent thread through all of those books was that when a person started taking heroin, their family stopped talking to her. So, she had already been predicting this for me for many years. So, I didn’t come up with these ideas by myself. But it was a really good escape hatch for me. I used heroin for a few years, got myself in some terrible, terrible trouble, ended up in jail, and then back in jail, 10 years later, the same thing, but um, when I left home, I just, I found a place to live. And she came there and saw me. So, then I moved further away into the city right into the city, and she came and found me. And so, I ended up actually just I lived homeless on the streets of Sydney for about nine months. Um, I was at the time, I was like, I’m pretty sure there’s a private investigator following me. And then my friends will like your paradine Angela, that’s the drugs found out years later that my rd actually had paid a private investigator to try to come and try and find me. And so, I did have a private investigator following me. for brief periods there, I had to make myself so unpalatable to my mother she had, she went through this period of every time she saw me, she would give me money for heroin and would try go and buy it for me offered to shoot the app one day because my hands were shaking too much. She was really it was kind of like Munchausen by proxy. She really liked having a broken child. When I was a kid, she used to feed me toothpaste so I would have a fever and go to the hospital. So by the time I left home, like it took me about a year and a half to get her to leave me alone. And then I met this man and, and he convinced me that he was going to rescue me and when we’re gonna get married, I was 17. He was 26. He’s the father of my child. He convinced me that my parents needed to be involved. In this so they came and met his family and it got really weird. And then it turned out he was abusive, because like part of what you do when you’ve had abusive parents is you go and find a bunch more to keep that abuse going don’t is so I actually have had I think my next book will be about how many relationships are fucked up on the way to having one that actually works. But um yeah, I had a child I was spiraling out of control, and I needed to, I got so sick that I actually genuinely don’t know how I’m alive, I weighed like 36 kilos, you guys can confer those two pounds yourself. And I had this big, crap sores on the corner of my mouth where every time I talked pass would run down my face. And I really liked to talk. So, I got really, really sick. And then I went to rehab, because that’s what you do. And I did 12 months in rehab, and my first therapy while I was there, and I started thinking, and I started putting things together. And the first three months I was in rehab, you weren’t allowed to talk to your family. That was one of the rules. And then I got through 12 weeks, and then my mother rang me. And I stood there, and I had not wanted to use heroin. I was going through the program, I was loving it, I was enjoying being clean. And then I heard a voice on the phone, and I wanted to use again. And I was like this is and then I said, no, I can’t have any contact with you. And then about six weeks later, a social worker turned up at the rehab and told me my mother was dying in hospital and that I needed to go and make my peace with her. And that was in 1997. So that was the first time she got me out of the No Contact thing. And then I just I refused to play by the rules I’d been given. So, I, my son might, she took my son to live with her and put him in foster care. And I didn’t see him for seven years, the police wouldn’t let me file a missing persons report because he was with a family member. So, in that seven years, I tried to kill myself really hard with other drugs, not just heroin, I made my track marks into a work of beauty, you can use them as little soup bowls. And then I went No, I said, this is not working for me. So, I attempted suicide, which was kind of in my genes as well, when you look at it, or how I was raised, but then my suicide attempt failed. And while I was in hospital, the doctor who assessed me was my psychiatrist. And, and how I still see him to today. He, he was the magic thing I had just applied to go to university. And I have been spent 20 years telling this man these stories about myself. And he just he just gives me constant positive regard. He likes me no matter what. And 20 years of therapy, and 13 years at university and the two combined to just I can see so clearly how my teenage years were just like those years after I left home, that was all I Those were the only options I had. I didn’t know how to open a bank account. I didn’t know any of the basics of like economy of how the economy works, how politics works, how to engage with the world, how to get a job, but how to do anything. And so I spent 20 years being my own parent, in therapy, doing, giving myself all the things that my mother hadn’t given me to make myself into a human being and I think I probably technically hit like a human being around about 26 or 27. Before I was actually able to see myself as being the same kind of creature as the people around me. Now I bought I am 100% convinced I am a human being but took a long time. A lot of therapy. He charges $360 an hour to people who are being both build. Oh, I am so privileged this man. It changed my life forever. Oh yeah, absolutely. He is the captain of my fan club. Yep, yep. Yeah.
Victoria Volk 24:46
Sounds like an amazing guy.
Angela Williams 24:47
He is, he is.
Victoria Volk 24:51
Perhaps a father figure you’ve never had?
Angela Williams 24:53
Well, yes and absolutely the father figure I never had but also a kind of rebel. representation of society because the school ignored the abuse, the church ignored the abuse, our Doc’s the Community Services, they got sent out to see us. They saw me at the school and then went back home and told my mother what I said about her. So, all of society was just saying this is okay. shrink Allah, my psychiatrist. He was the first person who said, Actually, no, this isn’t okay. Like, there was a moment where I was telling him this story about how my grandmother said that if I could get a recording of my mother abusing me, then she would go to the police with me. And I was telling my psychiatrists this as evidence that my grandmother was my hero. He was like, hang on, Angela. If she was like, what adult asks a child to provide a recording of them being abused before they will believe you and take action on it. Yeah, he was the first person who ever said actually, no, no, this is not okay. And I needed to hear that.
Victoria Volk 25:58
In grief recovery. We talk a lot about my grief recovery specialists. talk a lot about beliefs. And what I mean was your I don’t know if this is okay to ask. So, if it’s not just let me know. But do you know if your mother who was abused, growing up?
Angela Williams 26:20
Okay, so there is, this is totally intergenerational. This has happened a lot in Australia. We’ve actually just put the story together. In the last, say, four months before my mother died. My auntie died. Well, three and a half months before my mother died, my auntie died and my auntie had been her younger sister, and had been the victim of her abuse growing up my mother and my grandmother used to team up on my sister and my her younger brother who died of suicide Would you believe? So? Arnie Liz died last year in August, September. And then my mother died in October, but in between, we found his briefcase that Ali Liz had had sitting for years and she would say to my uncle, don’t worry about this, this stuff for the kids. And she was kind of like my standing mother, I lost contact with her. She tried to kidnap me when I was 11 after my mother broke a fry pan on my head. And so, then we didn’t see them again until I was an adult and I found myself Um, so Arnie layers had kept this suitcase, this briefcase. So the way the story goes, we put all the documents together. My grandfather was a in the Navy, and he went off to World War Two, and he met my grandmother. And so, he went off to World War Two was on a boat, they accidentally told him my grandmother was at home, pregnant with my oldest Auntie, and they accidentally told my grandfather that she was dead her and the baby had died. And so then he ceased all contact with her back in Australia. And at the same time, the Navy decided the way to treat his grief was to feed him heaps of rum and put him in an officer training program. And then because of you know, all those screw ups that happened in World War Two, he didn’t come back to Australia for five years. And he lived as an officer in the Navy drinking heaps of rum and constantly reporting back to the hit the medics that he wasn’t dealing wasn’t coping with this while at home. My grandmother was going mad because her brand-new husband had deserted her and left her at home with this baby. So we’re pretty sure that something broke in the family then they went on to have three more children and my mother was the eldest of those three children. So, my grandmother was a nasty woman. And everybody agreed with that. She was nasty to her children, and she taught my mother her unique brand of nastiness. So, it wasn’t my mother would tell you she was abused by everyone. Everyone abused her. My stepfather abused her my father abused her my grandmother abused her. The people who were victims and my mother tell it very differently so I’m something broke in our family in World War Two. I’m trying to put we’ve got all of this in my grandparents own handwriting. My grandfather’s written this to the Veterans Affairs trying to get recognition of what was done to the family. But I think something broke back then. And so, then they came back to Australia and Australia had a really long we have made torturing children a tradition here. We routinely dig up backyards in the inner west of Sydney where there are multiple babies skeletons buried around because you could make money at certain stages of Sydney’s history by we call them the baby farmers. They would take babies on to look after them or to rehouse them and then just kill them and bury them in the backyard. We had orphanages set up just to bring homeless destitute children from the UK and the US to Australia to farm them out for profit. And this is like 100 years ago 150 years ago, so we had a really bad history of child abuse in Australia that was ignored on every level. So, it’s kind of filtered down to it is ridiculous how many friends I have. It’s such similar stories of mothers like mine. But down to really ridiculous. I have one friend and we both had the same identical experience of being made to paint ceilings in our house in the light one at two o’clock in the morning, standing on tables whilst being beaten with broomsticks. That is such a precise, it’s like we taught women in this country mothers in this country how to abuse children. So it, I can understand why she was the woman she was, but I can’t forgive it. But luckily, it turns out that forgiveness isn’t as necessary as they make out. Yes, so she there was something broken in the whole family. And my grandfather was one of the first people to get off the boat and set foot Hiroshima after the things did you know, we let Navy officials just get off and wander around there after the bombs went off without any PPA. Whoa, and then his hair was falling out and he was bleeding from his rectum for the rest of his life. Yeah, yeah. So I’m, I’ll do something with that suitcase full of records, write a book about it, but we can always you look at society, you look at any level of society, you can find something there that is guaranteed to turn a person into a monster. But at the same time, we have to look at the monsters and go doesn’t make it okay. The monster I should have been a monster I should be Myra Hindley, the serial killer, the most murderer had such a similar upbringing to me, I should have been Myra Hindley. But instead, I did therapy, wrote about my stuff, changed my life. And now I’m a beacon for good. We don’t have to live out the histories that were given.
Victoria Volk 32:12
It takes people like you to break that cycle to break the pattern of that generational learning. Because imagine then, if you hadn’t, how would your relationship be with your son? How would your son be, you know?
Angela Williams 32:27
Well, my son came back out of foster care to live with me when he was 11. Apparently, that never happens. So, we talked about it, he was officially put back into my care when he was 16. I took him back from the state. I was like, give me back those papers, which apparently again, never happens. But he lives with me now. He’s an adult 26 we have the best relationship in the world. He has been very slow about getting any relationships. And there’s damage there that comes from having a family like mine, but we did something different. He’s my hero. Would you like to say a picture of him from the book? So ah, he’s amazing. His name is Finn. I call them decks in the book. He got to choose his own name. There he is. Oh, that’s what he was little. And there is with me and him. No call. Oh, there’s my boobs. Look, I covered my boobs.
Victoria Volk 33:22
Check out this book.
Angela Williams 33:24
I’ll do but yeah, you don’t get the pictures in the edition. People have been very disappointed about that. It’s a very good book. Lovely. Yeah.
Victoria Volk 33:33
I like a book in my hands. Yeah, like a book in my hands.
Angela Williams 33:37
Sniff them. You can’t sniff in a book.
Victoria Volk 33:41
You can’t doggy ear you can’t like right?
Angela Williams 33:45
Take posted notes. Where do you put your posted note?
Victoria Volk 33:51
I know! So let me ask you this. Among all the chaos and the trauma and use and and and and where did you find your joy? How long did that take too?
Angela Williams 34:09
Finally my middle name is Joy, Angela joy because I’m an angel of joy. Yeah, I don’t know where she was going with that. But um, I found my joy by recognizing my superpowers. complex trauma does has an effect on the structure of your brain, particularly complex trauma with really young people so your, your brain wires differently to normal people and it gives you some things that like when we talk about pathologies, they kind of describe these as symptoms but I prefer to think about them as superpowers. So it was a really slow process, going to university and realizing that I was very good at critical thinking. I can put a Very sound argument together; I can read some very disparate different sources and bring them together to make a hole. And it took me a very long time to realize that that was because I was smart, I had been creative was the insult I it took me a really long time to realize that I was smart. Once I started to let myself relax into that. studying and learning and writing and creating is where I find my joy. It’s I’ve won a couple of awards for the book where I got to before it was published, I got to go and stay in this amazing writer’s retreat up in the Blue Mountains just above Sydney. And one day I wrote like 22,000 words, in one day, I was from like, three o’clock in the morning, I woke up just with the flow of burning in me and just wrote, that’s where I found my joy, I found my joy in not quite retelling, it’s reimagining every story I come up against, I challenge it, and I think about all the different angles and that’s, that’s why I started my podcast. So, I could just share this stuff with the world, I usually just share it with my Facebook and people are like, Angela, you need to talk to other people about this. I’ve done some conferences, a couple of appearances, and I just I love taking the bad stuff and making it into something good being able to find those cactus flowers. When I, when the editors of my book first read it, they were like this is an amazing book, there is a wonderful story, we just need you to find. Some of them are pretty bits, we need you to find the joy in there and bring it out because it’s a very heavy book to read otherwise. And so I’d gotten addicted to this kind of flow activity of learning and reading and synthesizing information before I realized that I was enjoying it. So, I was at university getting those really good marks going, spending 80 hours a week reading and researching and writing. And then never making the connection that the really good marks I was getting. And the fact that I was happily and willingly spending all of these hours reading things that other people were very resistant to reading. That’s where I get my joy and my flow. It’s the superpower of part of the brain damage that’s inflicted on you as an abused child is hyper awareness, you have to watch for everything, you have to read the tiny, tiny details because that’s what keeps you alive. I took hype awareness and made it into a craft an art form skill that I can use to make myself stronger. And that’s it. That’s where I found my joy in flipping all of the narratives and all of the stories I was ever given. And turn upside down look underneath find out the other version of the story and then do that instead. Yeah, yeah. And build the superpower theory has only really formed over the last five years or so when I got quite heavily into researching cortisol and neuro Neuro Linguistic prayer. I’m not I’m not doing NLP. I think it works, but I’m not doing it. But once I started researching how brain chemistry get to get gets fits together, I realized that Yeah, I get way too excited about research. So I just let myself do it now, freelance researcher, I am not affiliated with the university, I am considering a current research arrangement that might let me stick my nose into corrective services. But mostly I just to work from my fun
Victoria Volk 38:33
Was it your therapist that encouraged you to apply for university.
Angela Williams 38:37
No, no, it was not my therapist. It was well yeah, he encouraged me to apply for university, but I’d already kind of started the process before I met him. I was flirting with the idea people. I used to take a lot of drugs. I know I don’t seem as sort of way, but um, for a very long time. Or maybe it just seems longer because I was on drugs. I would have these conversations with people and the pool tables in the toilets at the pub at the bus stop. And they’d be like, you should go to university Angela. Um, so lots of people said it. And then I met this guy. He’s like, I was 26. He was 16. It was nothing romantic. He’s gay. Were bsfc lives in Canada. But he started going to university, and we were hanging out quite a bit. There was drugs involved. He started going to university and he was like, honestly, sorry, Chris. I know you’re listening. Not very smart. Not very smart. So, I was like, well, he’s going to university surely I can go to university right? And so, he made me drive with him to Wollongong University, just south of Sydney. And I was like, oh, this is pretty nice, isn’t it and then I watched him get to put your form in in person back then I watched him put his form in and I was like, by the time we got back to the car, I was like, dude, I’m gonna go to university. It was like, I think you should, And I didn’t know you could get scholarships because that I hadn’t done your 12 the end of school HSC we call it, I didn’t know you could get scholarships to pay for the bridging course. So, I was working in the sex industry. So, I just went to work and stayed at work until I made enough money to pay for that course. So, I could get in and go to university. Um, yeah, yeah, I was just determined to go. And then I worked in the sex industry the whole way through university, to pay my way there, which is legal in New South Wales, and we pay taxes and things. It’s excellent. And by the time I finished my second degree at university, I was just taught, I just stayed there until they started paying me to be at university. And then I got so involved, and I saw the back end of University and I went, I don’t want to work for your people anymore. I’m just gonna go and think for myself now. Yeah, so it was Christopher’s fault. He’s the reason I went to university. He’s just upstairs from you in Canada, give him a poke with the state.
Victoria Volk 41:02
There’s so many layers to you. Like it’s just,
Angela Williams 41:05
I know, I know.
Victoria Volk 41:06
What’s the next what’s the next chapter?
Angela Williams 41:10
I’m on, I’ve met this woman. I’ve had lots of very awful relationships in my time. And I’ve met this woman and she’s pretty excellent. We’ve been together for coming up on two years now. And our families like each other. And her mother gave me a card at Christmas time that know for my birthday right before Christmas. That said to my daughter in law, so we figure she’s dropping some pretty heavy hints there. Um, yeah, we are talking about going Bush, we’re gonna go and live in a tiny town and grow vegetables except for when there’s a drought, then we’ll just eat dirt and stuff. Because Australia and she started a business. I’ve got a couple of different things I do. I’m writing another book, of course, actually, that’s a lie. I am writing six different books at the moment. So, I should probably focus in a bit pour my energies towards just one of them for a while. Yeah, I’m just relaxing. I’m 44. I’m pretty sure that I’ve started metaphors. I’m going to see the doctor about that on Thursday. I’d really like to just relax and enjoy the second half of my life. I want this thing to go away. Like to. Yeah, my son’s name is Finn. I told him it’s my Finkle.
Victoria Volk 42:34
These are my like the number 11 I got you know, 11 lines. It’s Are you effing KIDDING ME lines?
Angela Williams 42:41
Well, I think I’ve done it so much. Mine squashed into one. Yeah, yeah. Oh, I am I’m a bundle of contradictions. My podcast, I go 20 minutes, Monday to Friday and,
Victoria Volk 43:00
Wow. What’s your what’s your podcast?
Angela Williams 43:03
Oh, my podcast is called the Deboning Power. I like to stick my knife into things. I just I’d make terrible puns. And I can’t stop myself. So, I talk about mostly I talk about New South Wales and Australian politics, I bust a lot of spin there. But then at the same time I have at least once a week I do one on getting better. The therapy stuff, Badaling, all of that amazing therapy I’ve had and just trying to speed it at the intent. And on Mondays I talk about kink. BDSM. I’m a bit of a community leader. So, I educate people about how to do things safely. It’s all a good combination. Power just pretty much covers everything, doesn’t it? You talk about power; you can talk about anything you want. Um, yeah, I asked if you’ve got questions. I’m very good at reading media. And I really dislike my politicians. So, I have to tell them that frequently. Um, yeah, but my therapy ones are my most popular. No, that’s a lie. People love the kink ones they get very excited about those, but the therapy are the second most popular episodes. Yeah. Politics is just what I do for fun.
Victoria Volk 44:11
I just, I love, I love this interview because it’s going from heavy to light to so many spectrums of the human experience that I mean do you feel like you’ve lived like three lifetimes?
Angela Williams 44:26
Oh, yeah, totally. I’m waiting let me I know I wrote this bio. Yeah, no, it’s in my bio. It says Where are you by Oh, come back here. It says that I’ve lived way more lives than by 20 I’d lived more lives than anyone should have I’ve but that was it right? Because I wasn’t my mother didn’t teach me how to be a human so I had to learn for myself and all of the predictions she made for me She told me I’d end up in sex work so I went into sex work became an incredibly successful like professional dominatrix. She told me I was gonna die from using heroin. So I use heroin. Instead used as a tool to escape and to get away from her. And she told me that I was creative. And that meant that everything I said was a lie. And instead, I became a writer and became very well equipped at just speaking truth. Truth is what I do better than anything. And this for a podcast about grieving. This is so important, because I’ve grieved my auntie, this year and my stepfather in a much more complicated way. But everything I’ve made in my life, every single weird thing that I’ve stuck my finger into, has been in response to my grief for not having a mother not having that central cohesive, because she was there, but she wasn’t a mother. So that’s everything I’ve done. My psychiatrists, my sex work, my education, it’s all been about mothering myself, giving myself the things that she wasn’t giving me and the thing. The thing that’s been hardest about her actually dying, was, how much relief I felt. And how uncomfortable I felt saying that other people I could tell my girlfriend or my psychiatrists, but it’s really hard with most people to say yes, my mother just died and I feel absolute relief. Over the years, lots of people have said, you need to make your peace with her. She’ll regret regret it when she’s dead. Everything I’ve done has been me making my peace with her. And I didn’t realize how efficiently I’d already grieved her. I didn’t realize how making myself into the opposite of what she thought I was gonna be was. It was a gift I was giving myself because that’s all grief is isn’t it? They don’t know were grieving them. They’re, they’re gone. They all of our grief is something that we give ourselves. It is a for some people, it’s soothing. for other people. It’s relief. And it’s about us, though, not them. And yeah, I couldn’t go to the funeral. I couldn’t my brother when she changed her name, after the court said that she wasn’t legally allowed to have access to my son. Cuz, she tried to get him removed from my care and put in foster care up near where she lives. So, she could see him up there. And I’m like, no, that’s not happening. And I, in exchange asked for an order saying that she never be allowed to see him again while he was child. So she changed her name after that. And so I would have had to turn up to a funeral with all these people from her church, who had become her church was very important to us. And I couldn’t have my truth there. I couldn’t, I couldn’t. I couldn’t perform the grief that they would expect me to perform. And I couldn’t fake it. If I walked into their I would not call her by her name that she talked to you avoid. Police finding out she was talking to children. I would just I’m too honest, I couldn’t do it. And every single funeral that I’ve been to, my army chose not to have a funeral. We got drunk on her river and sent her ashes out there all happily and celebrating under her tree where we fished together for years. I couldn’t give my mother that I couldn’t did a podcast instead. talked about it. Yeah,
Victoria Volk 48:32
Maybe a podcast about a eulogy that you would have liked to have written.
Angela Williams 48:39
Oh, well I tried that right. I was gonna give her a eulogy. And instead, I just ranted about how horrible it was that she decided to get buried on my birthday. Because you know, I do my podcasts every day. So, some of them get quite a lot of research. Some are just I am yelling at you today internet and that’s okay. When you do it every day, they can’t all be amazing. But that one was quite amazing. It was very raw I am I didn’t want to give her a eulogy. She um she left a stack of notebooks a stack of them and my brother burden I am I asked him to because we knew we knew that all that would be in there would be pages and pages and pages of explanations for why she was a victim in the world and everyone was out together and I’ve had it I’ve had the letters sent to me pages saying if you don’t respond to now I’m cutting you out of the will cut out of the well the first time when I was 14. So, it’s like you can’t keep holding that thread over me forever. And it turned out there was no will so or anything to leave.
Victoria Volk 49:43
The truth how you saw at people close to her? Probably never did.
Angela Williams 49:49
No, no, no. My brother asked if I wanted them. Or if I wanted him to say anything. said tell them to read my book. But that’s my truth. Yeah. Yeah. Because I’m, that’s it, I’m on to them, I said goodbye to them. By writing that book, I had to find some kind of sympathy for them in writing in that empathy that you have to have for your characters, even when you know their people abused you. I found a whole new level of understanding for my mother and writing that book and who she is as a person was as a person. But um, the only reason I would have turned up to that funeral was to make the other people there feel better about it. Yeah, I felt more guilty about being the MTC in the Pew then missing saying goodbye to my mother I’ve been. I’ve cried over too many times. Every time I cried myself to sleep after a beating, those were the tears that should have been at the funeral. And like I said to her, when she tried to ask me if she could move in with me a couple of like, last year sometime, I said I am. If you want to have children who are going to look after you’re in your old age, you have to skill your children up as human beings before they leave home. You can’t abuse someone for most of their life, and then say, Well, now it’s your turn to look after me. Yeah, can’t you just can’t do that? Yes. Yeah.
Victoria Volk 51:23
So she’s the epitome of a narcissist too?
Angela Williams 51:27
Oh, yeah, yeah, yeah. Yeah. Absolutely. Top to bottom. Yeah, and prescription pill addicts. So, you know, had lots of doctors treating her for lots of different illnesses and all kinds of prescribing. Yeah, medication for different things. And she would self diagnose and then go to a doctor and tell them that someone else had diagnosed her with that thing and then,
Victoria Volk 51:54
Coming back to what you were talking about with, like how other people would say that. You need to make peace with her regretted it’s like, what people don’t understand is like you like in grief recovery? Oftentimes, the people that give us the most grief are people who are living.
Angela Williams 52:11
Yeah, absolutely. And a lot of people when they say that they’re projecting their own experiences onto other people as well, if you’ve grown up with loving, supportive parents, it is very, very hard to conceptualize. Like, it’s equally hard for me to conceptualize loving, supportive parents, you can’t just assume everyone else has had the same experience as you. And when people say that to you, when they say, well, you’ll regret this after they’re gone. what they’re actually doing is trying to place this responsibility on you to value your blood connections over your own safety and security. If someone has just told you that they’ve been terribly abused by someone, and you turn around by saying, or you need to stay in touch with them, you need to have their your mother You have to have that connection, what you’re actually doing is I’m telling them, that all the stuff that that person has done to them matters less than their safety, no, sorry, matters more than their safety. It’s and grief is so difficult, we need to know to people will grieve the same way. And it’s been really strange talking to my brother about this, because we never, we’ve had a very difficult relationship because we were co victims, you know, victim bonded, and then talking to our kids about it. He has five kids and I have one kid and we talk to them about stuff. Particularly stuff with suicide, because my brother has four girls, my cousin has three girls, we talk about the suicide stuff, because not talking about it is more dangerous than talking about on now. My father’s suicide was not real. So, I don’t count that in the tally anymore. But apart from my father, I’ve lost half of my mother’s generation to suicide. And that’s enough. That’s enough. Yeah, so we talked to the kids, and we talked about the abuse, and we talked about what it means. And we talked about suicide because that’s it right you know, when you when you live with this risk, how can we reasonably certain I have complex Post Traumatic Stress Disorder, one of the most likely ways I will die is from suicide. That’s just the reality of my illness and my history and my baggage, so I kind of live around that risk knowing that yeah, and I suppose my mother’s done it now. So that’s even more likely, isn’t it? Um, that pushes me into even further into a risk category and that was that was one of my biggest concerns over the period where she was being buried. It was my birthday, which the last time I saw her on my birthday She sexually assaulted me in front of a big group of people and made a joke out of it. And yeah, so I was in a real risky place around that week and, but I just did what I do I talk to my psychiatrist, I talk to my girlfriend and kept myself safe. Yeah. I got docked in it. It’s okay.
Victoria Volk 55:25
You’re talking to me. You’re here.
Angela Williams 55:28
I know. I know. You’re like Oh, so many times over the last 10 years I’ve just stopped and yelled at the sky, I win! I am, I did so different to what I was told to do. I became whole.
Victoria Volk 55:44
The whole suicide narrative that doesn’t have to be your story. You don’t have to live into that story.
Angela Williams 55:51
Yeah, but we have to talk about it. Exactly.
Victoria Volk 55:55
As much as you talked in, you know, I’m sure your therapist, ie your father figure.
Angela Williams 56:03
In Australia, were as scared of talking about suicide as we are talking about child abuse. We have named renamed world Suicide Prevention Day is now called Are you okay? De? Shut up? No, it is and instead of talking about suicide, people say, are you okay to all their friends and everyone wears a badge on that day and then we don’t have to talk about it the rest of the year. And our Prime Minister has just hired a woman for one of these marketing buddies who is going to she is revolutionizing the Suicide Prevention space in Australia by she’s making a program where we’re going to identify people who might be at risk of suicide and then offer them support and counseling but without bringing up the topic of suicide so we’re going to talk cast people go up and have conversations with them where we just all of a sudden look really positive and cheerful that I’m sure will say Are you okay? And but we’re not ever going to mention the word suicide So yeah, I respond to my environment. This country is a bit toxic in some ways. So yeah,
Victoria Volk 57:08
Better line would be, how do you feel?
Angela Williams 57:12
Well, yeah, I’ve been every year. I’ve I kind of I get a bit activist around Are you okay day, and I like to do things like, why isn’t it okay for me to say I’m not okay. Yeah, and this year this year, it was Oh, sorry. Last year. 2020. Do you guys have kitkats? Over there? Yes. Yeah, yeah. Do they have the have a break? Have a KitKat? ad? Guess who sponsored Are you okay, day in 2020. kid? Are you okay? Have a break? Have a KitKat?
Victoria Volk 57:46
Anything related?
Angela Williams 57:50
Yes. Someone in the marketing room thought they were an absolute genius coming up with that sponsorship campaign.
Victoria Volk 57:56
Make suicide talk clever.
Angela Williams 57:58
Yeah, yeah. How to kick cat instead of killing yourself.
Victoria Volk 58:01
Oh my god.
Angela Williams 58:02
We want to talk about it without talking about suicide. So yeah, yeah. It’s one of my topics.
Victoria Volk 58:08
Yeah. bring that to the forefront, more regularly. Yeah, for sure.
Angela Williams 58:14
Yeah. I’m a bit of an activist in the circle. Yeah. Yeah.
Victoria Volk 58:19
My Bringer.
Angela Williams 58:21
Truth speaker, brutal, unflinching, and honesty is my brand. Yeah. I say the things that other people are just too uncomfortable to say.
Victoria Volk 58:33
What would you like to scream to the world? and wish people knew about your grief?
Angela Williams 58:39
I did write something that didn’t I?
Victoria Volk 58:42
I think it comes down to just that you don’t always have a loving relationship.
Angela Williams 58:47
Yes. All right. I already said that. No, yes, that is the thing. The thing I would like to scream to the world is that not everyone has a loving relationship with the person they’re grieving. And we need to make space for people who don’t we’re in Australia, there’s a fly there. Not everyone is going to mourn with sadness and tears. The shock on some people’s faces when I said they said, I said my mother died. They said, how are you I said, I feel relief need to make room for people to feel relief, we need to welcome these kind of stories of grieving that challenge the norm and challenge the stereotypes because lots of people have come to me over the years and asked for my support with going no contact with abusers. There’s a lot of people out here living this truth. And the reason I’m talking about this as much as I am right now is just to say to all of them, you’re not necessarily going to regret it. You’re not we don’t all grieve the same way and we don’t all love the same way and we weren’t all raised the same way. We have to give each other room for the differences.
Victoria Volk 1:00:01
Because we’re all unique, and every relationship is unique, and like you kind of brought up a little bit earlier, like you and your brother lived in the same household with the same person, but your experiences, you’ll see it from your own unique perspective, and you won’t believe the same.
Angela Williams 1:00:17
I don’t. No.
Victoria Volk 1:00:19
So, coming from a place of understanding and compassion?
Angela Williams 1:00:24
Absolutely compassion, we need to just be more gentle on each other. We’re also willing to tell each other what’s wrong with the other person, but much less willing to look at ourselves, I it’s the biggest value I’ve had of therapy every two weeks, I spend an hour fact checking my reality and identifying when I have fucked up when something is my fault. And when I have contributed to something, and then changing that.
Victoria Volk 1:00:54
What does that look like? What does it process for you?
Angela Williams 1:00:58
Oh, I’m big on accountability and honesty, and I screw up all the time. It’s, for me that it’s hard, it’s hard to realize that you’ve done something wrong, or that you’ve been an idiot, or that you haven’t noticed something harmful you’ve done to another person. I did a I did a really good podcast recently about shame and secrets and about how we talk about them. And I think for me, a big part of living so honestly, is learning to also cope with shame, deal with shame, acknowledge shame, Own your shame. It’s the the feeling that we run away from the most is shame. And I know that my feeling of not wanting to leave that empty seat at my mother’s funeral was linked to my shame of never having been a good enough daughter for her never having. And I’ve carried that shame so long, but it’s still something that I need to check again and again and again. And its stuff that it’s so easy to project onto other people.
Victoria Volk 1:02:13
This is like the third time the word shame has come up today.
Angela Williams 1:02:18
Really?
Victoria Volk 1:02:19
Yeah, and so that’s actually where I was kind of going and how shame is very much tied to grief. Oh, yeah. Because, you know, we may feel guilty about something. It’s these conflicting feelings of I should feel this way. But I really feel that way. I want to feel this way. But I have this weight of shame. Yeah, and, and that blocks us from the ability to be intimate with ourselves, like to really look at ourselves, and really connect with other people.
Angela Williams 1:02:59
Yep. Or shame is such an uncomfortable feeling it is. It’s prickly and horrible. It’s when our chest gets warm, and our throat gets warm, and our face gets warm. And most people will never even recognize that they’re feeling shame. In my opinion, I think a lot of us flip it instantly into fear or disgust or anger or rage to avoid having to feel shame. And I think that people like myself, and like my mother who blamed everything outwards. That’s about doing anything possible to avoid having to come close to that shame. And what you’re saying is true. It blocks you from any kind of intimacy with yourself or with other people. Because when you’re 100% doing everything you can to avoid feeling shame, you never give yourself the space to connect realistically with people because everything is about protecting yourself from shame. And it means that when you need to be accountable to someone, if you’re doing everything you can to avoid the shame. All you’re going to do is put up a wall between you and that person. And that’s usually cut that wall is really frequently blame. It’s your fault. You did this to me, you made me do this. And as soon as we put the word you in there, we’re pushing our shame away putting it onto another person and saying this is yours. It’s it’s so much harder to just say, I’m really sorry I did this, and I can see how awful it’s been for you and then just stop talking.
Victoria Volk 1:04:40
Be honest. Right?
Angela Williams 1:04:41
Yeah, it is.
Victoria Volk 1:04:42
And that honesty is the drug is the wrong word. Antidote for shame.
Angela Williams 1:04:45
Oh, that’s a good one.
Victoria Volk 1:04:52
It is the antidote for shame.
Angela Williams 1:04:55
It is. Do it, do it. I think I might have said something similar in my shame. People message me all the time to say they’ve read that one. I mean, listen to that one, it’s amazing. We need to talk about shame more.
Victoria Volk 1:05:10
And the word grief, and the word suicide.
Angela Williams 1:05:13
Oh, yes. And how they all lay it together, I was I’ve spent so much of my life, thinking that if I could just be a bit more something, then I’d be the kind of person my mother could love. And my first suicide attempt, when I was really young, came as a reaction to feeling that I would never match up to that. And my last suicide attempt came from a feeling that I would never match up to that. And that feeling that I would never match up to it. That is shame. That is, but that is that’s absolutely shame that’s been kind of mis smeared on to me, but I never did anything wrong, I didn’t actually have anything to be ashamed of there, there was no way that I could have made that woman love me no matter what I did, but
Victoria Volk 1:06:04
And then here’s the thing. She wasn’t there, when she wasn’t, she wasn’t there for you to even blame and wanted to blame her, she would turn it around and spin it on you. So that’s where that self destructive behavior, if people don’t, aren’t able to communicate, and get that out, like, just even speak it.
Angela Williams 1:06:31
But the other thing is right, that that shame, I can see that shame now and know that it’s not my shame. But before I could do that, I had to feel that shame, and process it and think about it in all of its deeper layers. So, when I first met that shame, it was my shame because I hadn’t looked at it enough to know that it wasn’t. And so, when you can identify shame that has been smeared on you from outside like that, then you can step back from it and go, no, I don’t own it. It’s not my shame. But you’ve got to go through the process of feeling at first. And so, a lot of a lot of things that people turn into more dangerous emotional, well, toxic emotions, like anger and rage is things and blame was something where if they just sat with the shame, set with the feeling and thought about what it said about them, it might have been that they’d done something that they needed to apologize or be accountable for. Or it might have been that they were carrying some baggage that had been smeared on them from outside. But by refusing to feel the shame through that uncomfortable bit and think about it, they’ve lost the ability to it becomes their shame, then no matter where it comes from, because they can’t look at it long enough to categorize it, sort it into its basket. Shame is toxic. I’m pretty sure that shame is linked to the majority of suicides that happen and I can see my mother’s as a direct result of her own shame made had finally gotten to the stage where she couldn’t keep spinning games to people. But that was her shame, not mine.
Victoria Volk 1:08:16
I believe the root of shame is grief.
Angela Williams 1:08:20
Yeah.
Victoria Volk 1:08:22
I believe grief is at the root of a lot.
Angela Williams 1:08:29
Yeah, and we haven’t I think we’re carrying a lot of kind of societal and cultural grief as well. Some of the things that we’ve seen humanity being capable of in the last 100 or so years. I will buy way before that as well. But you look at things like World War Two and the impact that had on my family we all kind of we have a lot of shame that’s spread around and it is about grieving it’s about when you feel shame you’re grieving something in yourself. We don’t only grieve deaths we lead grieve losses as well. And payment grief so much shame about grieving. I was supposed to bounce back we’re supposed to be able to deal with it. We’re supposed to,
Victoria Volk 1:09:14
Yeah, I could talk all day about grief. It’s really the loss of hopes dreams and expectations and anything we wish would have been different better or more. And so, when you think of grief in that way it that’s why I say everyone, every single one of us has grieved something.
Angela Williams 1:09:33
Yet, all we’re putting off grief to later we’ve got something we should have grieved, or we need to grieve and we’re saving that up for ourselves to do some other time.
Victoria Volk 1:09:45
But we’re dealing. Dealing with it yes, some way. Yeah. You know what, if you turn into the bottle, if you’re turning to sex, if you’re turning to gambling, you’re turning on your turn into shopping. You’re you’re addressing it?
Angela Williams 1:09:58
Well, yeah, I did a podcast on this yesterday where I was talking about endorphins and pain and how endorphins work just there your brain’s natural heroin. So, when you’re doing things that give you an adrenaline rush, basically all you’re doing is getting your brain to shoot out its own heroin. And that works for emotions as well as for like physical pain. So yeah, the great eraser is what they call alcohol in the AIA movement, the great eraser and it is it’s just, you’re not dealing with it, you’re just kind of putting a cap on it and hope that it will stay there for a while. But your card that those caps don’t hold, they got to cover off eventually.
Victoria Volk 1:10:42
Well, no grief recovery can be equated to picture yourself as a tea kettle. And you either implode or you explode.
Angela Williams 1:10:52
Yeah. Yeah, that’s good. And that bit in between, you’re going to be spitting stuff in every direction. Yep. Yes.
Victoria Volk 1:10:59
I’m assuming it was your therapist, who was the most supportive of you? What did you find? was most helpful to you? And I started to navigate everything.
Angela Williams 1:11:14
When I first got the email, saying that they needed me to call about my mother. I am. I hope she was dead, after all the times that she’d kind of use that as a tool. But I couldn’t let myself hope because it had happened a lot before, but I couldn’t I also couldn’t. It’s really difficult to say to a person who was ringing me to say your mother’s in hospital, you need to come and see her to say no, I’m not doing this again. So, I rang my brother and said, I think can you call this person I think something’s gone wrong with our mother. And that was the best thing I did. asking him to do that for me. I couldn’t have done it. A year ago, we drove to my Arnie’s for her funeral together it was the longest we’d spent alone together since we were children. So, I called him and asked him to take that and then in the bit in between me saying that to him and him ringing back to tell me that she was dead. My beautiful girlfriend just I didn’t cry. It was really I felt shame about not crying. But I just kind of sat there with it kind of gradually dawning on me that maybe this time she actually was dead and and then I had four or five days of just was like I was startled cat constantly. It was really bad timing. The Jacaranda trees were out, and they triggered off some really bad stuff from my 16th birthday. So traditionally, my entire life every single time I’ve seen a Jacaranda tree. I’ve had this moment of being triggered back into my 16th birthday. And day after she died, I went out driving with my girlfriend and a sort of Jacaranda tree. And I just had this moment of lightness in my heart. So it took me a couple of days to actually believe that it was real this time that I wasn’t going to open my email or my messenger to a big long message or lots of messages from people she’d messaged about me, but I just I took that space, my girlfriend has sat on the lounge next to me and held my hand and she just kept saying to me, I’m here, like whatever you need. I’m here. First, I got an in practice I had, when Annie LEDs died in September, I grieved really hard, I cried on the floor in the kitchen for hours. And I cried on the floor in the bathroom, and you know all the places with tiles, let’s go and cry there. But I couldn’t cry over my mother, I couldn’t. I just needed the space. And I needed the space to own that reality, and to go yet. And then I had my next therapy session. And then it’s harder she died, and we talked about that. And then I have my next one where I said and you wouldn’t leave, she got married or got buried on my birthday. And he was just like, of course she did. And it was like I needed those people around me who I knew would just affirm my decisions. And luckily, I’ve curated my world quite well. All of the people who said things like, our mother would never do that to her daughter, I’d gone I just haven’t I don’t give them space in my world. So I just yeah, I needed that space and I needed a couple of days to just test. I kept expecting to feel regret. I kept expecting to feel loss. And all I felt was like the threads are finally gone. The threat that she could pop up any second and want my attention again or The worst thing she ever did was every single time she saw me as an adult, she apologized for what she did to me. And then she said, I don’t remember any of it. I wasn’t there when any of it happened. So yeah, yeah. She said, I’ll let you publish that little book, and you say whatever you want, because your reality is your reality. And it was like, your reality is your reality is pretty good. But the bait at the beginning what you say, will you publish that little book. Um, yeah.
Victoria Volk 1:15:28
Give him permission.
Angela Williams 1:15:30
No, I didn’t. And I kind of can’t believe I waited until after she died to start a podcast because I’ve been yelling a lot for years. But um, I just gave myself space to let myself be however I was. And it was a surprise for me every day. I’m still kind of surprised that I don’t feel regret.
Victoria Volk 1:15:49
So, advice. And it’s that’s advice too, for others.
Angela Williams 1:15:55
It is nice. Yeah. Yeah. Yeah.
Victoria Volk 1:15:59
The people around you that,
Angela Williams 1:16:02
Connect with people you’ve similar experiences. if for no other reason, then just so that you’ve got someone you can talk to? Who knows? Because really, I can’t imagine only having friends who’d had excellent relationships with their mother and then trying to talk about this. About this big circle of friends. I call them the bad mothers club. We um, we know, we know, because we’ve all been there. So those are the ones I went to talk about it because they want to know.
Victoria Volk 1:16:36
Can I ask you something?
Angela Williams 1:16:38
Yes.
Victoria Volk 1:16:39
How do you hear something today, too? And I’ve been given it a lot of thought even before, but do you identify yourself as a survivor? Like, is that a word? That you feel like you wear like a badge of honor.
Angela Williams 1:16:58
Some people hate that way.
Victoria Volk 1:17:00
Or do you feel like that’s something that I don’t want that to be my story anymore?
Angela Williams 1:17:05
Um, no, I do identify as a survivor. I’ve had a lot of conversations with people who I also use the word victim about myself, though. And I know a lot of people who refuse to use either of those words in relation to themselves. I survived this stuff. If I wasn’t a survivor, I would be dead well, and truly did many, many times over. Sometimes I watched that survivor show. And I think you guys wouldn’t last five minutes in my life, some bits of it. Yeah. Let’s do survivor where you’re just homeless in Sydney instead of on a tropical island. I’m a survivor. Because you’ve got to you’ve got to value the superpowers, don’t you, you’ve got to see the things that are most valuable there. And when you live with a constant risk, like suicide, sometimes the only thing that gets you through is being a survivor. My house is filled with ridiculous craft projects that I did, because I was putting off committing suicide. That’s one of the things I do, I’m like, Well, I will make this stupid thing in my kitchen, I have a little angel made out of why you know how you do those string dolls, where you tie them up, and you make the legs and things. I made it out of really horrible why I where I must have stabbed myself dozens of times. And it’s got these little beaded wings with string. And I made that doll about 20 years ago instead of committing suicide that day. So I’m a survivor and I’ve got like, evidence of my survival all over my house and my life and my body and things I am I have to celebrate it because I haven’t traditionally had a lot to celebrate. So celebrate the things you can and I know that some people don’t like the term survivor and they don’t like the term victim because it that kind of disempowering element that by saying we’re survivors were giving over some of our power whereas I think being a survivor should be mark of honor. And it should be seen as a mock Ivana, it should be. If you know people who’ve survived bad shit standing or have them, look at them and go you did something that I could never imagine. I like it. I like it. I’m happy. I might get a tattoo that says survivor. I put it next to my feminist killjoy.
Victoria Volk 1:19:31
I just, you know, I just heard a story today, a woman she was an addict for I don’t know how many years and she she had a different perspective of the word survivor and hers was, I didn’t want to be that I didn’t want that to be my story. Like and, and like suffering. And yes, this idea of, let’s get out of the suffering and let’s get into the joy, let’s just work on the joy.
Angela Williams 1:20:02
Absolutely. And that part of it, like people talk about tragedy porn, and trying to avoid just your entire life being a story of tragedy, which is I talk about the tragedy and the bad stuff. But I try to talk about the good stuff as well. And I don’t want being a survivor to be the only thing I’ve done. But I never want to forget that it is something that I’ve done
Victoria Volk 1:20:26
It and it’s, we have both right, in society in our human experience.
Angela Williams 1:20:32
Yeah.
Victoria Volk 1:20:33
You know, you don’t have to have traumatic physical experiences for something to be or feel traumatic.
Angela Williams 1:20:40
No.
Victoria Volk 1:20:41
To feel like you’re a survivor of something.
Angela Williams 1:20:43
Yeah.
Victoria Volk 1:20:44
So yeah, I’m just you know, I’m actually going to add that as a question.
Angela Williams 1:20:50
I think that bit where I was talking before about the superpowers. That’s it, like I could celebrate being a survivor, because I can identify the superpowers, I got from what I survived. So, I can celebrate my strength.
Victoria Volk 1:21:04
Yeah, its deeper. It’s going deeper than just this identity.
Angela Williams 1:21:10
Yeah. Well, when I get to talk about surviving, and means I inevitably get to talk about how strong and powerful surviving made me. So, it’s kind of that flip side. Yeah.
Victoria Volk 1:21:20
Can I ask you another question?
Angela Williams 1:21:22
Yes.
Victoria Volk 1:21:23
This just really just drives me nuts. What are your thoughts when you hear people say that children are resilient?
Angela Williams 1:21:31
Oh, I hate the word resilient. Oh, God. It’s so shaming, I keep hearing it from our politicians here where they’re like, our country has been on fire, then we had some floods. And now we’ve got COVID. They’re like, you just need to be more resilient, because that’s what we’re saying, instead of let’s talk about suicide. Oh, my God, children don’t need to be resilient. No one needs to be resilient, if you are. Resilience should not be our natural state resilience is to stress and yes function. And I don’t know if anyone’s noticed. But when you put kids under stress for too long, their brain chemistry changes. with superpowers and celebrating being survivors. We don’t want our children to have to end up with superpowers and celebrate being survivors. So we’re not going to force our children to be resilient, I firmly believe that every child deserves to have a period of their life where they’re not under stress. I cannot imagine what that would be like. But imagine if you did Imagine if you just woke up every day knowing you were secure and loved, whoa, children don’t need to be resilient. And now when the entire world is falling apart, and were taking bits of their future away from them just because of you know how capitalism treats things like illness. Now is not the time to tell them to be resilient. When we say to these kids, you need to be resilient, we are shifting the responsibility for what the world we’ve made them. We’re saying, Well, now this is your responsibility. You deal with all the crap we left you just be resilient. It’ll be fine. No, I hate the word resilient. Yes, yes. Our Prime Minister keeps saying our kids don’t need to be anxious. We’re looking after things. He says that about climate change, we’re going to get we’re gonna hit our climate targets by pretending we hit and 10 years ago, we’re just making up these climate credits. And he’s saying to the teenagers, just don’t be anxious. Okay. He took a lump of coal into parliament and hugged it on the floor of the Parliament. And he’s saying to the teenagers, don’t be anxious. Yeah, it’s an insult. It’s awful. Teenagers rise up rebel burners all tell us to piss off and make the world in your own way.
Victoria Volk 1:23:46
With your creativity.
Angela Williams 1:23:49
Exactly.
Victoria Volk 1:23:52
No, and I think it came up not that long ago on another podcast episode I did where it just it. I just I’ve heard it so much lately, especially with Kobo and everything. And it’s just so resilient. They bounce back. I mean, I’ve heard that as I heard that around me, like in my personal experience, what I went through, and it’s like, kids that you’re saying that about did not choose to be resilient? No, no, why not something they chose with you. You catch yourself saying that they’re resilient, that that child is resilient. You’re there in an experience that they did not choose?
Angela Williams 1:24:29
Yep, yep. Yeah. And nobody needs to says or yell or be resilient when I grow up. They want to be right. They don’t want to be resilient. Yeah, yeah.
Victoria Volk 1:24:42
Yeah. Um, I love this episode. I love this. Very rich. Where can people find you?
Angela Williams 1:24:51
They can find me on Facebook. If you search for my group, Deboning power podcast. You can find me there. I even share myself sometimes. Yeah, I also have my podcasts which is deboning power. And that seems to be pretty much everywhere where you can get podcasts you can find that one. Yeah, yeah, I’m not gonna give people my address because this is the internet. Well, links my book you can get anywhere. It’s in audiobook form. The performer who does made a remarkable impersonation of me. She’s excellent. It’s also available in ebook and in beautiful, sexy paper form. And they will send it to you in America on ada booktopia. Or, what’s the other one that’s got sold on Amazon. So, it might be it might be on Amazon. But booktopia ships internationally I think or the Book Depository one of those too.
Victoria Volk 1:25:51
Send me a link. I will put it in the show notes. Anything else you’d like to share?
Angela Williams 1:25:55
My final thoughts. Love yourself. Love yourself. Give yourself the love that other people could give you even if you are loved by everyone in your world. Still love yourself. But if you’ve got no one and nothing, give yourself love. Because that’s it is that is that?
Victoria Volk 1:26:18
I heard when as a kid, I think my dad would always say this. Something about if you think I’m this? If you want a helping hand, look to the end of your own arm.
Angela Williams 1:26:33
Oh, yes. Yes. Yes. Hmm. I like that. I like that.
Victoria Volk 1:26:41
You were your own hero.
Angela Williams 1:26:43
Yes, we all can be
Victoria Volk 1:26:46
We all can be. Absolutely. Yeah. Thank you so much. Thank you so much.
Angela Williams 1:26:49
Oh, thank you, thank you.
Victoria Volk 1:26:53
And remember, when you unleash your heart, you unleash your life. Much love.
Cancer, Child Loss, Grief Stories, Grieving Voices Guest, Grieving Voices Podcast |
Margo Fowkes | Lessons From My Beloved Son, Jimmy
SHOW NOTES SUMMARY:
In this conversation, Margo shares the lessons she learned from her son, Jimmy, as he battled brain cancer for eight long years.
His cancer took his life at the young age of 21. What is a little different about Margo’s share is that, prior to her son’s death, loved ones close to her who had passed had all lived long lives; close to or in their 100s.
Her own father had passed away, also peacefully, in his home. The loss of her son jolted her beliefs around death and also taught her the importance of having hope to the very end.
Margo also shares some practical things that others did that helped her family get through the years of treatments Jimmy went through and after he died.
We also chat about the importance of grief communication in the workplace, and how, through Covid, it’s even more important to acknowledge the struggles of those with whom we work. Also, to recognize that even happy workplace situations can cause grief, such as promotions.
- This episode is for you if you’re not sure how to support someone you know who is going through a challenging time.
- This episode is for you if you want to hear wonderful insight into how, as parents, they communicated and updated Jimmy’s progress with friends/family.
- This episode is for you if you or your company could use some insight into the topic of grief in your company.
Mentions:
Connect with Margo:
Victoria Volk 00:00
Thank you for tuning in to grieving voices. Today, my guest is Margo Fowkes. And she is the president of on target consulting, where it’s an organization that helps leaders create a more compassionate culture by speaking openly about grief and loss in the workplace. Also, after the death of her son, Jimmy in 2014, Margo created saltwater, a blog, an online community that provides a safe harbor for those who are grieving the death of someone dear to them. Thank you for being here. Margo. We’ve connected online socially, prior to today. And and so I’m meeting for the first time virtually.
Margo Fowkes 00:43
Yeah, well, thank you so much for having me. As I shared with you offline, I so enjoyed listening to my friend, David Bartley, get into his conversation with you. And so it was, it was thrilling when you said that you wanted me to come on the show like this?
Victoria Volk 00:59
Absolutely. He recommended you and a friend of David’s is a friend of mine. So happy to have you. So, let’s begin, then, what brought you to doing the consulting work on target consulting, in the work that you do, which I absolutely love, by the way, because I actually gave a presentation to my employer. It’s a international company that I work for corporate, and you know, it was just about grief, because actually COVID and all of this, you know, everything that everyone’s experiencing, and it got good feedback. So I really love that you provide this service for for leaders and places of employment. So how did you tell me the story of how you found out how that work found you, I suppose.
Margo Fowkes 01:52
So, I actually started my consulting back in the 90s, right after my son Jimmy was born. And I did it because I didn’t want to go back to work full time. And I wanted the flexibility of being able to work from home, my husband runs sales organizations, or run sales for organizations. And so he travels a ton. And I wanted something where it was flexible and local. So, I started off consulting to government, because I had come out of government. Right when I had Jimmy, and I didn’t like it, I just found that I was doing these projects. And it was hard to get the person who would hire me sometimes to move on the work that I was doing, it was a lot of marketing and business development kind of work. And so I took some time off when my daughter was born in 1997. And I was really struggling with what to do. And a friend of mine said, you know, you really love the consulting part of it. It’s the clients, you need to switch what you’re like the content of what you’re providing, and who you’re providing it to. She said what you really love doing. And what you’re really focused on is creating a positive environment in a workplace. And she said, So, work on that, consult on that speak on that. So, I started with one topic, which was how to be more positive in the workplace. And then over time, clients would ask me to do other things. So I started doing strategic planning, I started working with boards of directors, I started doing some executive coaching and it just kind of expanded as I went. And one piece of my practice has always been around working with companies who’ve done layoffs and helping them rebuild the team after the layoff because before I went, went into government work, I had worked for unisys Corporation, which was a big mainframe company at the time. And I had been through three layoffs with them. And the first one took our little office of 75 people in Sacramento, down to 50 in one day, and it was incredibly traumatic. And of course, it was far worse for the 25 people who’d lost their jobs. But what I learned through that was that it’s really traumatic for the people who stay to because you feel guilty that you still have a job these people are gone you’re picking up extra work and and the company at the time wasn’t very good at providing any sort of support around that it was like okay, well you have jobs now there’s extra work let’s all get back to work and and the idea was you sort of like you know, you’re supposed to pick up your spirits and, and go on. And so when I started doing the consulting work, I got hired to come in and work with teams who were in the situation that I had been in, and I didn’t use the language of grief and loss at the time, because I hadn’t been through my own losses yet. But I found that when I went back to the consulting after my son passed away, that I really saw that connection that this was a perfect Found lost even though someone hadn’t died. And then once COVID hit all of a sudden now there was much more talk about that in the workplace. And so employers and CEOs and senior leaders were much more open to looking at it through that lens, which is a big shift. But an important one, because as you mentioned, you know, with doing your presentation, there’s so much loss in the workplace that happens, even when it’s when it’s happy things like your manager that you love gets promoted and gets a great new job. But all of a sudden, now you have a new manager. And even if you like that person, you’re still missing the person who’s been promoted. And so, there’s just there’s all those Now granted, that’s not something where you need someone to come in, necessarily and coach you through that you work through it on your own. But I just have found that there’s so much intersection between those two worlds in a way that I never saw until after in until after my son died.
Victoria Volk 06:00
Well, I think that’s where the communication piece is huge. And organizations, you know, as far as well, this is what’s happening, you know, to make it a community experience, where you can talk openly about it right and share openly about it like, you can not like the person that’s maybe taking that position, or you can like them, it doesn’t matter either way, like you said, there’ll be grief about you know, especially if you love that previous manager. So, I love that that work. found its way to you and like how it evolved over time. And I just think there’s so much need for it, so much need.
Margo Fowkes 06:45
Oh yeah, absolutely. It’s I was at my college reunion a couple years ago, and I was connected with someone that I had grown up with and then gone to college with and he was sharing that his sister had passed away of an overdose. And he said, you know, everyone in my work environment, new people sent cards, you know, people reached out, they’re very supportive. But he said, I went back to work, and nobody said anything to me about it. And I have found that that’s actually not uncommon that people and it isn’t through bad intentions, people think, Okay, well, Victoria is back, and I send a card, and she knows that I care and that I’m really sad. But I don’t want to bring it up at work, you know, because maybe she’s not thinking about it right now. And I don’t want to throw her off, or what if she cries and we’re in a meeting and I don’t know how to handle that. And so it there’s this kind of cone of silence that goes around people who are grieving at work and and they need that opportunity, oftentimes to talk to, to talk about it and have it acknowledged, and it may not be with everyone, they absolutely not, but they need at least one person that they can go to when they’re having a hard time and talk about it. And I think a lot of times again, it’s you know, managers and leaders don’t always understand that it is in fact that in one way, that’s simple. And so, the tendency is to just is to stay out of it to just feel like you know, it’s just a landmine, I’m just not going to bring it up. And I might say to her occasionally, you know, are you okay? Victoria, like Is everything all right? But I’m not really going to go there because it’s just too It’s too scary. And I don’t want to do the wrong thing.
Victoria Volk 08:27
Right? It’s a personal problem where like you said, they’re afraid to say the wrong thing. Or, you know, what I find too, is that so often people, you know, you’re given this timeline of time off, when you, someone close to you, it’s like, four days a week, at the most. It’s like, okay, you’re back to work, let’s let’s start cracking, you know, get back to the way it was, you know, and so that’s where that culture, I think of not saying anything, when people come back to work after a loss. You know, because that person, that’s how society has trained us to be so then you presume there must be okay, I’m not going to bring it up. Yeah, it just creates the just the lack of communication and this indifference to it really just feeds into all the myths that we talk about in grief recovery, you know, grieve alone is a big one. And that’s what many people do. I just I love that you do bring this education piece to the to the workplace. Like I said, I think it’s so needed, especially COVID, like during COVID. Now, how has that changed for employers who maybe have an employee that has lost someone like for me personally, like I work remotely. My whole department actually works remotely. We always have. And so you know, I had a colleague lose a loved one recently, it was her mother. You I sent a card and but it’s it’s, it’s really hard now during COVID, when you’re quarantined when so many companies have moved to remote, you know, operating their business remotely? How do you create? Can I ask this, that you have a recommendation for this? Like how managers can handle that, like how they can bring more community to someone who’s maybe have a loss, when we’re all over zoom? Right?
Margo Fowkes 10:30
Right. Exactly. Oh, it’s so much more complicated, because you can’t check in in that same sort of informal way, right? You can’t, like wander by and stick your head in and say, hey, Victoria, you know, how are you doing today? And, and or, or you can’t see somebody in a hallway and think she looks sure eyes are red. I wonder if she’s doing all right, maybe I am. And get that prompting, right, we’re on zoom, we have our little boxes, you know, particularly if it’s a team meeting, and there’s 30 of us, you know, all on the call, it’s hard to tell if I look down, am I taking a note? Am I checking my phone and actually not really paying attention? Or am I upset by something, and it’s really difficult to tell. And I think you said the magic word earlier, which is it’s about communication. It’s about checking in more. And I think in this case, if you’re talking about someone who’s had a had a death, that it’s finding the person in the organization that grieving person is closest to or most comfortable with, and having that person check in along with the manager more frequently. Because one of the things I’ve heard is that sort of the flip side of the knot checking in not asking how people are not offering to adjust a workload or help out in some way. The flip side that people have said is, you know, you meaning me, need to temper what you say about the checking in because I might not want Joe to check in, I might not like him that much. And so it really has taught me to say it needs to be people that that other that the person who’s grieving wants to connect with, it’s not a blanket, let’s have everybody check in and make sure that this person is okay. You might send a note you know, or an email, which is fine, or send a card, whatever. But when it comes to a like a, you know, a face to face or a phone call, it needs to be somebody who really knows that person, well, where the person is comfortable saying, Yeah, I’m really struggling. And I need some, maybe I need some help, you know, they might actually need to maybe see someone to talk about it. But they also might need to really have their workload adjusted, right, like being on the phone might be really difficult. And they don’t know how to tell their manager, look, I can’t make sales calls right now. Because then the fear is, of course that the manager is going to say, well, then you’re not really doing your job, where they probably wouldn’t, they would probably say, Okay, well, let’s have you work on the proposals. And we’ll ask someone else to pick up the workload on the phone calls for a while until you’re able to get back on the phone. So I think it’s just about checking in much more frequently, and probably in multiple ways. So that it’s it’s not always the phone call. Because you can’t have that informal checking in it’s it might be texting and emailing as well. And again, it’s the manager and the and then this this additional point person who should just do it pretty regularly right now, because it is more isolating. I think we’re all struggling more in general. And for someone who’s also had a death COVID has just made everything so much more painful and so much more difficult because of how isolated we all are.
Victoria Volk 13:47
And I want to highlight too one thing is that the relationship, that I like that you brought that up that it can’t just be anybody and don’t make it like a blanket check in because it should be someone that probably has an understanding of that relationship as well. Because one thing that we take for granted sometimes or we make the assumption that, well, if you know, she, this person lost their mother, well, they must be really close, it must have been a really loving relationship, which is not always the case. It could have been a very tumultuous relationship. They may not have spoken in five years. We don’t know that right? Usually, we don’t know that. So the importance of it being someone close to that person who maybe unders has an understanding of the relationship is one thing too that I just want to bring up that should probably be taken into consideration as well. I think we say the wrong thing.
Margo Fowkes 14:45
Exactly. And as you just brought up and know really well his context is so important, because you also get those losses where it’s, you know, an ex-husband, for example, or an ex wife, and people think well, they’re divorced. Right. I mean, I’m sure they’re sad, but it’s not that big a deal. But it’s there can be so much more to that relationship. It’s it, whether whether it was completely contentious, and they were both very happy, you know, or it was the right choice for them to split up, or whether they’re, you know, one party didn’t want the divorce, and the other one did, or whether they just couldn’t really live together, but they remain close friends, there’s so much nuance there. And, again, I’ve just learned so much over the years about the fact that context is all important. It did it really you cannot make a judgement based on the late the box that the loss fits in, you need to know a lot more, because it can be a devastating loss that on paper looks like it wouldn’t be a cousin, for example, passes away and we think oh, distant cousin, like, I’m sure they’re sad. But how close could they be? In my case, my one of my cousins is like the sisters that I didn’t have. And so, you know, it really does vary.
Victoria Volk 16:01
Exactly. And that’s what we talk about in grief recovery, because every relationship is unique, because we’re all individuals, right? So exactly the same loss in one family, everyone’s experience is going to be different, everyone’s perception of the relationship is different, therefore, how they perceive that loss will be different as well. So exactly why we kind of hash that all out and brought that hot highlighted that because in the workplace, it’s huge right now. So, thank you for your contribution to humanity in that way. So, you did speak of that you got into this work, before you even had any losses, and then kind of COVID. And you mentioned the loss of your cousin. What? Take us back to the beginning, like what what have been your losses, this is the whole premise of you being my guest is that you share your grieving voice. So, what is your grieving story?
Margo Fowkes 16:57
So, my first significant loss was actually my cousin Seymour, who was like a second father to me. And his wife, Barbara is my father’s niece. So, my parents and Barbara and Seymour were best friends. And Seymour died in 2002 at the age of 82. And so again, this is where context is everything right? You look at that from the outside, and you think, well, at two, he had a long, full life. But at the time, my father was 101. And so it was devastating to me to lose see more because he was healthy and vibrant. And he developed what we think with some kind of like an occult cancer, they were never able to diagnose it. But he declined fairly quickly over a short period of time. And so, it was a loss that we didn’t really see coming, given the context of my family. And so it was devastating to lose him for me. But again, there’s that you know, what you get when you lose someone that age is you get a lot of, well, they had a long full life and so I did I you know, my son was really devastated because he really loved Seymour a lot. And so I tried to do the whole stiff upper lip thing, right? And and nobody better and it was like, okay, but you know, we had a long, full life, Jimmy would say, Yeah, but Papa is 101. And so he got the fact that this was, you know, we were hoping for a lot longer for his birth, this received more. But at the same time, there was the kind of like, intellectual part of me that just kept saying to myself, that this is what happens. He’s older, you know, you need to just like Buck up and be sad, but kind of, you know, move through it. And then the following year, my dad passed at the age of 102 and a half, as sad as I was, in that case, it’s hard to I, you know, I don’t even know if argue is the right word, but kind of argue for more time. I don’t know who you’d argue with, but the universe, I guess, because he lived this amazing life. He was 60 when I was born, so I to have him for that long to have him see me get married to know both of my children. It was it was just, it was hard to argue with in a way. And so, I was sad. But at the same time, I was so incredibly grateful to have had him for so many years. And so that, you know, that was my early experience to loss and it really in a way, unintentionally sort of set me up, which is the idea that you live to this kind of ripe old age. And then like in my dad’s case, he passed away at home, barely peacefully. And and I thought well, okay, well so that’s how it works, right? It’s like, I just was incredibly naive when I look back on it because I had not had experience with out of order loss Bay. Basically, at that point, and then three years after my dad died, my oldest son, Jimmy was diagnosed with brain cancer in 2006. And at the time, he his prognosis was good, we thought we would be able to just have the tumor removed, he would go through radiation and chemotherapy for a year, and then everything would be fine. And, unfortunately, that was not the case, because the cancer came back. And he eventually did pass away. And that was the that was the loss that really threw me into that whole world of grief, because of course, it was my son, it was so out of order. He was 21. And, you know, I don’t it’s not to say that you can be prepared for this, as you know, it’s like the loss knocks you sideways no matter what. But I think in my case, because of my prior experience with loss, I was more naive than most about the way loss can affect people. And I’ve since learned from doing this work, of course, that it’s so much more prevalent than I realized in so many unfair ways. But at the time, when Jimmy was diagnosed, I just had no idea.
Victoria Volk 21:14
My mama heart goes out to you, I have not experienced a loss of a child, I cannot even fathom what that does to my mother’s heart, other’s heart. So how did that change the work that you did? Or that you were doing at the time? And how much time did you get off? You know, like, I suppose you’re working for yourself, though, too?
Margo Fowkes 21:38
I was. And it was, it was interesting to watch kind of the dance, if you will, that my husband and I did relative to work, we were blessed to find out that we work well, we always thought we worked pretty well as a couple, both as parents and just in general as a good team. But it was really amazing to sort of stand outside and watch how well we work together with respect to Jimmy’s diagnosis and his eight-year cancer journey. So, when he was first diagnosed, I was we were both working. And my husband decided that he was in between jobs, he works for startups. So it’s not uncommon for him to leave one when it’s either sold or goes public. And then he’ll usually take a few months off, and then he’ll start the next gig. So, he was just about to take a new job when Jimmy was diagnosed with cancer. So he turned that job down and just said, You know, I don’t want to go back to work right now. Because my work involves travel. And I do not want to be gone, I want to be able to be home so that if he doesn’t feel well at school, he can call him call me I can go pick him up, you know, so he decided he took, I think he took the full year off that Jimmy was in treatment, and I continued to work. And then we had one year of 92 scans every three months where we thought Jimmy was cured and was going to be fine. And so he went back to work, I continued to work. And then in 2008, when Jimmy’s cancer came back, we decided that Dan would continue to work and that I would step away from my consulting practice, because the thing with Jimmy’s kind of brain cancer is there are 300 Kids diagnosed with it every year. And of those kids, I’m not sure the exact number that statistically they expect to survive it. But it’s it’s somewhere between 60 and 80%, depending on whether the cancer has metastasized or not. So, you can think about how small the numbers are for the kids whose cancer come back. So, the treatment options are much more experimental in the sense of they don’t have huge populations to try out these different protocols. And so, there’s the doctors do their very best to stay up on all this stuff. But it is an overwhelming task to kind of figure out what’s happening all over the country, even all over the world in research and clinical trials when you’re dealing with such a small population. And so, I started working with Jimmy’s doctor who we adore, doing extra research and reaching out to doctors and bringing him information sometimes because of the if it was a smaller trial, he might, you know, not necessarily either have the bandwidth to contact the lead doctor on it or even sometimes know about it just because there was so much information available. And so, I did that during the time that the next six years as Jimmy was dealing with his recurrences. And then after he passed away in 2014, coming back from his celebration of life, my mom got sick and over the next year, her health declined and then she died the year. After Jimmy did, so I wound up again staying not working during that year that she was sick. And I don’t know that I could have any way. I mean, I wasn’t really in much condition to try to put my consulting face on and, you know, go do work. I can’t imagine that I would have worked anyway. But then after mom died, I was the trustee for her estate. And so that took about a year and a half to resolve, you know, to go through just a lifetime of stuff. I mean, she she passed away in the house I grew up in also. So, I mean, my parents had everything from the time they first got married. And so it was an enormous amount of stuff and paper to go through, too. And it wasn’t until I emerged from that, that I thought, Okay, I think I might be ready to start working again. And it was around the time I launched salt water. And I went, and I relaunched my consulting practice around the same time, basically.
Victoria Volk 26:02
When you could finally breathe, right?
Margo Fowkes 26:06
Yeah, exactly.
Victoria Volk 26:07
I’m curious how you helped your son navigate the grief he had around his diagnosis. I mean, eight years, that’s a long time to have like this. Yeah, to deal with this diagnosis. How? How does parent even help a child navigate that? The grief that they have? Did he you know, I’m just really curious about that.
Margo Fowkes 26:33
You know, Jimmy had this amazing, hopeful attitude, where he just always went into things thinking, well, tomorrow will be better. And so like, I remember asking him once on a long walk, because we used to walk a lot just to get an exercise. And also, because it was a, there was something like, it reminded me of when parents talk about being in the car with their child, and all of a sudden, the child will start talking about something, I’m sure you’ve had this experience, as if somehow being contained in those walls of the car, it’s safe to tell mom about whatever the thing is. And so, we would take long walks together. And I asked him once about his scans, and whether or not he worried about his quarterly MRIs. And he said, no, he said, I don’t think about it until I’m doing the scan. And he said, and then I think about it a little bit until we meet with Dr. Nicholson later that day or the next day. But he said, even if the news is bad, he said, I know that you and Dr. Nicholson and dad will figure out what the next best thing to do is, and then we start that, and then I don’t think about it again until the next one comes up. And that’s just basically how he navigated those years. And I know that I spent nights thinking about the things that were lost in terms of his balance and his and his hearing and his cognitive abilities, he slowed down because of all the treatment more towards the end, because of all, you know, of all the radiation and chemotherapy it had, he had this beautiful ability to focus on what was left and, and really find joy in that. And if he spent periods of time mourning what was last, he didn’t really share that. And it wasn’t until the very, very end where he started talking to a social worker, where he expressed any interest in really wanting to see someone to kind of work through what he was going through. So he I mean, I it sounds crazy in one way that this you know, 1315 1820 year old kid carried us but, you know, we’ve we fed off of his hope as much as he fed off of ours. So, he is yeah, it was amazing to watch him navigate it.
Victoria Volk 28:51
I think even just in grief in general, grief, terminal diagnosis, if we don’t have hope, what do we have? So that is the greatest lesson to that. I think young people, they’re more able to live in the present moment than us adults. You know, we’re all up in our heads all the time. But a beautiful gift that he gave you.
Margo Fowkes 29:14
Oh, absolutely. Absolutely.
Victoria Volk 29:18
So, in the loss of your mother then happened. So, during that time, what are some things that you found helpful to you? Because I actually I don’t know that I’ve had anyone on the podcast yet who has been through a similar situation of a, you know, long diagnosis like that of a loved one. What are some things that you found helpful to you during that time, or unhelpful that people would say to you?
Margo Fowkes 29:48
So helpful first, the biggest thing was meals. And I got really good advice from a dear friend of mine, who’s a very long-term survivor of metastatic Breast cancer. It when Jimmy was first came home from the hospital, and we were facing six weeks of daily radiation, and then nine rounds of chemotherapy. She said to me, I know you and I know that people are going to offer to help. And you’re going to say, No, I’m good. I’ve got this. And she said, You need to just shut up and say thank you. And she said, you’re going to want you’re going to want the help. And sure enough, my closest friend in Portland, where we lived, Kristen, Kristen said, look, I’m going to organize meals for you. And my initial instinct was to say, No, we’re fine, we’ll go to radiation, we’ll come home, I’ll make dinner. Oh, my gosh, what a blessing she organized meals for us starting it started every day, and people were bringing us food as if we were a family of 12 instead of a family of four. And so we switched it up to every other day. And it was just a godsend, because we’d get home around five or 530, from radiation after Jimmy Bennett school all day. And there would be food waiting on the front porch for us. And it was so incredibly helpful. And so yeah, one big piece of advice that I always give people who are who are dealing with, you know, a cancer diagnosis cancer treatment situation, or even after a loss is it food is just a godsend, so that you don’t have to spend time in the kitchen, preparing it, whether it’s just for your family, or for people who are coming to the house to either be with you and the person who’s in treatment or after a loss. It’s incredibly helpful. I would say that was the biggest thing. And then the other thing that was incredibly helpful was with our daughter, Molly, who’s four and a half years younger than Jimmy, our goal was always to keep her life as normal as we possibly could. And so she was aware, of course of what was happening at an kind of an age appropriate level. But we wanted to be sure she could still go to soccer practice and softball practice and spend time with her friends. And so having someone help with carpool was really helpful. And and having places like my friend, Kristen’s daughter on Elisa is my daughter’s best friend. And, you know, knowing that I could call Kristen at a time and say, can you have Molly over? Jimmy’s really not feeling well, you know, can we get her out of the house? That kind of help is also invaluable? Because this it’s so difficult to, to think in advance about the siblings when you’re in the middle of this. And it’s it was like, you know, Kristen is like Molly’s second mother. And so it was such a beautiful partnership in a way that know that there was this other dear friend who loved my daughter, like I do, who just would would pick up the slack would get her places would have her in the house. Molly was like, you know, her fourth child. So that was really helpful as well.
Victoria Volk 32:55
And that is the gift of friendship, right?
Margo Fowkes 32:57
Absolutely.
Victoria Volk 32:59
You know, friends are there, thick and thin. And that just brings tears to my eyes, because it’s what a gift, you know, people in our lives that, you know, you don’t realize until you need them. Right?
Margo Fowkes 33:14
Exactly, exactly. Well, and that’s with something that when people ask me about it, you know, when we meaning people who want to support someone who’s grieving, I always say go back to the simplest things. It’s food. It’s carpooling. If you’re close enough, and the person feels comfortable trusting your child, you know, with you. I remember right after No, I’m sorry, Jimmy was dying. And we had people coming through the house. And after some relatives left, they left us with this with our counter just covered with dishes and newspapers and my friend and came over to walk our dog, which again, another thing that was hugely helpful, because he’s cooped up in the house all day with us. And so, she would drive over and get him and take him for a long walk. And she walked in the house, and she looked the kitchen counter, and she knew we had more people coming in that afternoon to stay with us. And she said, I’m gonna clean your counter. And I said, no, no, the dog really needs a walk it, please, that’s more important. I’d love you for offering but you know, I’ll get to it later. And she said, Okay, so I heard her leave with the dog. And I went back into Jimmy’s room where he was with my husband. And I came out like an hour and a half later, and the dog was back in and had cleaned the counter. And I have never forgotten that because it was that the beauty of like seeing what needed to be done. And knowing that sure, I could do it, but that would be 30 minutes away from my son. And so she just cleaned it for me. And it’s just it was amazing. And so that’s why it’s like people I think sometimes are looking for like the more complicated answer to how I can be supportive and it’s that it’s cleaner counters, walk the dog mobile Wanna make a meal? And just do it just just show up and do it? Because if you’d asked me well, even then and did say, I’ll do this for you, and I said, No, it’s fine, I got it. Right. And that’s and is actually the same friend who told me when Jimmy was first diagnosed to just take the meals, except the help, and don’t try to do at all.
Victoria Volk 35:21
And that it’s just the logistics, right of being a mom, the logistics, like everyday stuff that, you know, the to do list never ends, there’s always going to be something on the to do list. And so someone can lift that burden of the to do list. It is your right, it’s the simplest thing. Exactly. take the initiative and remove those duties, so you can actually be present with your loved one. Right? Right. What was the best piece of advice you ever received, then after? after he passed and with your mom, and you know, after you could kind of breathe and reflect like, what are? What were some of your greatest takeaways?
Margo Fowkes 36:08
So, I have a couple answers to that, I think the best piece of advice that I got was to keep writing. Because when Jimmy was diagnosed, I didn’t set up a caringbridge page for him, like a lot of people do, I would send out email updates. And I would I tried to have the email updates match Jimmy’s outlook. So in other words, I would convey the truth of what was happening at any given time. But they were always hopeful, there was always you know, even as we got closer and closer to the end, there was always you know, another treatment to try another option, more life left to be lived kind of thing. And I don’t mean that in a sort of Pollyanna way. Like it wasn’t that, but it was it was just Jimmy’s outlook. And that’s what I was trying to capture. And so, I did a fair amount of writing through those. And there were several people who said, don’t stop writing. And I did for a while because it was just too hard. But then I picked it back up again. And so, when a friend of mine suggested that I start writing about child loss, that’s how saltwater came to be as because she said, you know, we The world needs your voice basically, to write about this. And, and that’s I think, because I had done that writing and I had had people say to me, even though I hadn’t actually taken the advice to keep writing during those first couple years, it was always in the back of my head so that when that friend said, you need to start writing again, you need to start writing about child loss that I was I was ready, if you will, to do it. And so it was it was really good, because I don’t know that I would have had the ability to see the impact of what I was writing if people hadn’t told me about it. And so, I don’t know that I would have had the idea to to create saltwater had somebody not said that.
Victoria Volk 38:07
Wonderful. That’s the ripples, the ripples.
Margo Fowkes 38:11
Exactly. And then your other question about kind of what I would tell other people, one would be to write because I do think that whether you write to share it or you write on your own, I do think it’s really, really powerful for people. But I also know that not everyone, you know, not everyone likes to write. And for some people, it just it isn’t appealing to them, it feels more like homework or, you know, something that they just don’t want to do. But the other the other piece of advice that I have, if you will, is that I think in when Jimmy first died, what I wanted most was to connect with other parents who’ve lost children. Because I was so devastated and so guilty as a parent for not protecting my child, even though intellectually Of course, I knew I couldn’t stop Jimmy’s brain cancer. But there’s this like, feeling and so I think as parents, that we should protect our children no matter what. And so, I had guilt. I mean, I had I was, you know, I had moments of anger where you know, the whole Why, why did this happen to us. And the thing that was the most comforting was to connect with other parents. And initially What I wanted was parents who were kind of in the same state that I was in, you know, where the loss was fairly recent, and they were fairly raw. But what I learned was that it was so helpful to connect with people that were farther down the path than I was, because even though I didn’t really want hope or think that I wanted hope. At the beginning, it was so helpful to talk to somebody who who was 10 years past the death of their child and realize that that I could find a way to keep living and to make a life in the aftermath of Jimmy’s death. So, I think it’s really important to have not just the people that are walking with you on that grief journey, and they’re in kind of the same place, but to have people that are up ahead of you, to you who are shining a light and saying, Yeah, you will climb out of this pit, that you will find a way forward even without your son.
Victoria Volk 40:18
And that’s the hope, right? Hope bringers in our lives.
Margo Fowkes 40:22
Exactly, exactly. Yeah, I was just gonna say, and frankly, I mean, who else are you going to believe than somebody who’s actually done it? Right? I mean, people around you will say, it will get better, you know, that kind of thing. And it’s hard to believe them, you need somebody who’s actually who’s has found a way to do that.
Victoria Volk 40:43
And that’s with any loss. That’s with any loss that we experience in life. But I want to just highlight to when you talked about finding someone that’s maybe maybe further out from their loss, and they’ve, presumably have turned a leaf in their grief, I suppose. I just want to bring up that sometimes, you know, the support groups, and we talked about this prior to recording, but we talked about, like support groups in general, you know, we look for that similar loss, where we can sometimes then to get stuck in our story. And so, if we’re in a group of people who are all stuck in their story, there’s no progress, there’s no action, there’s no, where’s the hope then, right? If one is just coming week, after week, after week, and sharing the story, because we often don’t want to talk about how we feel. And that’s where I want to bring up when you talked about writing, many people don’t want to get into writing. And just because they might not be a big writer, but for many people. What happens when we free flow, right? We get a little bit deeper than just our thoughts, we get out of our thoughts, and we get into our heart. For many people. That’s why writing feels icky. Right? You don’t want to do it, because that’s painful to tap into our hearts and but it’s also therapeutic.
Margo Fowkes 42:08
Right, exactly. Well, and I think that I mean, I think that’s really true. And I think about like my mom, for example, she and I had I don’t know exactly what the right word is because contentious is too strong, way too strong. But we bickered more than we do ever had in the final couple of years of her life. And she had a rare blood disorder called poly cytopenia, which led to her her different kinds of blood counts, or platelets, or red blood cells and or white blood cells spiking. And so for years, it was controlled first, by just drawing a drawing blood periodically to just lower her counts that way, then she was on a very, very low dose of chemotherapy. But over time, what happens with polysafe emia is eventually the body just can’t process all this extra blood. And it goes into the spleen, and I think into other organs. And eventually that’s, you know, that’s what took her life. But what I didn’t realize at the time, and I don’t know if she did either, was that I think when you think about those counts going up, well, of course, it would have effect on your mood, right? It would affect your brain. And it was the first period of time in our relationship where she was just more cranky about things. And my reaction was not to think well I wonder what’s going on with her because of course, I was dealing with the grief of the death of my son was and and Jimmy’s final years, and then his death. So my my reaction was just to get cranky back. And I carried a ton of guilt about that. The fact that we, you know, had that kind of back and forth. And it wasn’t like we weren’t in contact or we weren’t close. But it would sometimes mar the visits that we’d have, you know, some kind of an argument about something stupid, they weren’t even about big issues that we would be arguing about. And so it took me a long time to start writing better to your point. Because to write in a real sort of way, I had to go into those feelings of guilt and regret. And I’m still working my way through that because I do feel really sadly about sad about that. And part of me knows standing outside of it, I was doing the best I could. And there’s another part of me that just thinks God if you had chest stopped to like, ask a question or drawn that extra breath are counted to 10 you know, could you had less little, you know, kerfuffles about things, but I do, but to your point. So I think that’s both the end and the Yang of the writing, right? It’s on the one hand, it’s what keeps you from doing it sometimes. But it also it does help you kind of work your way through it and see that, you know, you’re human, and you know, we’re humans doing the best we can in any given moment.
Victoria Volk 44:57
And often the hardest thing to do is to forgive ourselves.
Margo Fowkes 45:00
Absolutely. Absolutely, yeah, exactly. If you told me the story, I would be incredibly sympathetic and say, Well, of course, you didn’t have the bandwidth to ask her why she was crying. It’s but it’s much harder for me to say that to myself.
Victoria Volk 45:14
Well, and you were deep in your own grief, like you said. And so, we don’t. I mean, grieve alone, it impacts us our capacity to concentrate to focus to process information. And so, if we’re emotionally, I can get into the talk about energy, and the energy behind thoughts and feelings, and all of that, which I love to talk about energy. But, you know, you probably had a lot of blocked energy, whatever, relate, you know, because regardless of the relationship, we have things that are incomplete for us, within context of relationships, emotionally incomplete, you know, and what is grief, it’s, it’s a change of, or, you know, in a familiar pattern of behavior and loss of hopes, dreams, expectations, and anything we wish would have been different, better or more. So, if you think about that, that is a definition of grief. Like that’s a lot. You can think of a lot you can fill pages of feelings around those things. So yeah, it’s, it’s, it’s really hard to forgive ourselves often.
Margo Fowkes 46:20
Yeah, well, there’s another piece to that too, which is the myth of time. Because in the case of my mom, my mom was 92, her mother lived to be 102, and a half, my father lived to be 102 and a half. And my mother, who’s 20 years older than my father thought, well, she was going to live to be the same age, and so did I. And so as we were having these disagreements, which weren’t normal for us to be bickering in that way, I know that there, my thought was, okay, this is just what’s happening right now. And I knew that I wasn’t as patient as normal, because I was, you know, because I was dealing with with the loss of Jimmy, but I had the idea of like, I get through this period, I’d start to feel a little bit better. I’d get more patient, we get through this right. And then she passed with, and that’s just life, but it’s, but we do often. Do you hear that a lot. People think well, I thought I had more time.
Victoria Volk 47:20
And that’s a myth for sure. Yes, after someone passes, too, it’s like, oh, in time, you’ll get better. You’ll feel better. Okay, well, time just passes, right? So, thank you so much. Is there anything else that you would love to share?
Margo Fowkes 47:39
I don’t think so. I feel your questions were so good. And I feel like we we really covered a lot of ground in a short period of time. So no, I really enjoyed our conversation.
Victoria Volk 47:50
I did too. I did have another thought. But it had escaped me. So, shucks, maybe if I think I’ll, I’ll ask you in an email, and then you can respond, and I can put it in the show notes. But absolutely. I feel like, yeah, you know, I have a note here, I’m just gonna say this, because you know, this misconception of is in your in your form that you filled out prior to recording, you talked about how there’s no greater gift than someone asking you to tell them about Jimmy and sharing a memory of him, especially if you hadn’t heard it before, or saying his name. So that made me think of this misconception that we tend to have too is that well don’t mention the deceased loved one. Because, you know, it’ll make the griever upset, it’ll make them upset, or, like you said, like, context matters. And so instead, maybe ask the griever about their loved one, their favorite memory, like you said, or a lesson you learn from them, and saying their name. So, it’s just opening up the lines of communication. But you can do it in a way that’s loving and caring and helps you to reflect as a griever. And think of a happy moment, a loving moment that you had with your loved one. Do you have anything to add on that? Because that was that was something that you mentioned. And I just thought that’s kind of important. I would just want to mention that at the end here.
Margo Fowkes 49:18
Yeah, I guess a couple of thoughts on that. One is I think that as Grievers, we can really help ourselves by letting the people around us know how much we want to hear our loved one’s name, and here are the stories. And part of that is us talking about that person bringing up their name and maybe talking about a fond memory that we have of when we were together with that other person that we’re talking to because I think sometimes people need permission if you will, to bring up something like that. But the other thing I learned too, was that you don’t have to know the person who’s died to bring up their name and the best way I can illustrate that is with a quick story. So my daughter played softball in college. And we traveled with the team, not with the team, but we traveled to watch her play. And I got to know one of the one of the moms of an older player on the team, the mom’s name is Carrie. And we were we would spend time together; we’d sit together at the Games oftentimes and watch. And then one time we were in the airport together and Molly’s bio mentioned, Jimmy, and I knew that people on the team probably knew that he that she’d had an older brother who died of cancer. But Carrie, and I had never really I don’t think talked about Jimmy. And we were sitting in the airport this one time by ourselves. And she was telling me a little bit about her about one of her children who had some health challenges. And then she said to me, I, I’d really love to know about Jimmy about who he was and what he liked, what he was like as and she said, but I don’t know if it’s okay to ask about that. I started to cry, it makes me cry. Now I started to cry. And then the poor thing is thinking, oh, no, like, I’ve done something really horrible. And I said, no, Carrie, I said, I just I’m so overcome, I cannot tell you what a gift it is to have you asked me that. And I realized, like you were saying that there’s always a way in. So that you can ask, even if you don’t know the person who’s passed away, to still give the other the person who’s grieving an invitation to talk about them, that you don’t have to know anything about them. And so it was really lovely, I had an opportunity to tell her what my son was like, and to have her feel free that she could ask questions about, you know, what made him laugh or what he was interested in, or what he loved to do. And it was I’ve just never forgotten it. Because it was such a gift not just in the moment, but also it really taught me the power of doing that with someone else. And saying, tell me about your loved one.
Victoria Volk 51:56
I’m not going to I’m going to kind of put you on the spot. How about you tell us about Jim?
Margo Fowkes 52:02
So, Jimmy, oh my gosh, Jimmy was just an amazing kid. He was. He was so quick to laugh. He had a great sense of humor. And he came out like this, this little Buddha like character, in that he was just so mellow from the time that he was born, he was the kid at parent toddler, when we would separate from the kids for like 40 minutes for a little bit of parent education. And the kids would go out on the playground with, like, with four of the moms and the other. I don’t know, 10 of us who were in the class got, you know, 40 minutes of time with the teacher away from our kids, as all the other kids are sobbing and clinging to their parent their mother’s leg. My kid was the one who was like, okay, mom, Thea, and he would just head out to the playground. And he that that was him. I mean, he was just he was this little Independent Spirit. He had a great sense of humor, he loved to laugh, and I and I still oftentimes I can hear that laugh as he was, you know, be sitting in the living room, watching an Adam Sandler movie, or The Big Lebowski or something that he thought was funny. He just was really present, wherever he was. And so he he was, if he was talking to somebody, you had his full attention, which was just such a gift, whether it was you know, his mom or or someone that he’d met, he used to say, which is one of my favorite expressions, he used to say that he was a Type B in a type a family. Mom and Dad, we are all very type A and Jimmy was far more mellow than, than the rest of us. But the funny thing is, is that what that type B personality often hid, was that that kid was so stubborn. And so he when he didn’t want to do something, it was so hard to get him to do the thing, whether it was homework, or it was, you know, exercise. If he didn’t want to do it, it was practically impossible sometimes to convince him to do it. Which is funny because I think people who, who didn’t have to parent him oftentimes were surprised that I would say that because they wouldn’t see that stubbornness in him.
Victoria Volk 54:27
Thank you for sharing that.
Margo Fowkes 54:29
Yeah, well, thank you for asking.
Victoria Volk 54:31
Anything else you’d like to add? Thanks so much for sharing today for being able for sharing your wisdom around the work that you do with consulting and just a lot of practical things that we covered today, too. So, thank you for that information for my listeners. If people want to connect with you, where can they find you?
Margo Fowkes 54:54
The easiest way to find me is to go to findyourharbor.com Which is salt waters website and the links to my social media are on there. And if they want to know more about the work that I do on grief and loss in the workplace through my consulting practice, it’s on target consulting.net. And there’s a page on there on grief in the workplace.
Victoria Volk 55:19
Can you share a little bit about the name came to be?
Margo Fowkes 55:23
Absolutely. So, the name comes from an Isaac Dennison quote, the cure for anything is salt, water, sweat, tears, or the sea. And a friend of mine, when she saw that suggested that I call the website salt water, and that I organized the blog posts into those three categories. And the minute she said it, I thought, Yeah, that’s it. That’s it. And we also came up with the tagline of find your harbor or find your safe harbor at the same time. So, it was one of those magical moments where you think Okay, that’s it, you just sort of No, this is this is the right thing to call it and the right way to organize it.
Victoria Volk 55:59
Love that. I think intuitive friends is amazing, right?
Margo Fowkes 56:03
Yes. Back to us with exactly. Yeah, exactly.
Victoria Volk 56:08
I’m all about intuition. Yes. Thank you so much. I look forward to seeing where saltwater takes you, and insulting and the work that you’re doing. And so just thank you again, for being here.
Margo Fowkes 56:23
Oh, thank you so much. And thank you for weaving in the consulting too. Because I think, you know, just like your experience in the workplace. I think when I first relaunched on target and started salt water, I thought of them as being very, very separate. And part of that is because salt water is is free from any sort of solicitation. I don’t I don’t ask for money, you know, there’s no, there are no ads on the site. And so part of it was I wanted to keep them separate that way. But it was actually really lovely to watch saltwater, my work with saltwater inform my consulting. And to see that the connection between the two because I hadn’t since I didn’t have to go back to work after Jimmy died. And my husband took some time off as well. I didn’t think as much about the way grief and loss shows up in the workplace. And so I think it’s really important to talk about I think COVID has actually one of the silver linings, if you will, of COVID is that it has broken US Open more to understanding why we have to talk about grief and loss in the workplace. But we still have a long ways to go. And I think, yeah, and I and I think it’s really important to talk about because so many clients that I talked to, when we’re working on something like this, they they so badly want to be supportive, and they have no idea because there’s no training out there for this. They’re just they’re going on Raw instinct and like you talked about with the myths, right? There’s the myth of like, you don’t mention the person’s name, you don’t upset the person maybe you know, it’s been six months, maybe they’re over it or healed or you know, whatever other terminology people use. So, I think it’s a lot of it is about empowering people to just know that it’s okay to bring it up. Even if you don’t know what to do that you just to talk about it and figure out the best way to be supportive.
Victoria Volk 58:08
Well, and as a leader in an organization, it’s about informing yourself. It’s about seeking new knowledge and new otherwise, we resort to what we’ve been taught. And as children, we’re often taught to grieve alone to replace the loss all these different myths of grief that we talked about grief recovery. So yeah, it is very important to change that narrative so that with education, that’s when the tides really turn, right?
Margo Fowkes 58:33
Right. Right, exactly. Exactly. Yeah. So, I appreciate you bringing that up because they, I think they are woven together. And sometimes people don’t always see that weaving.
Victoria Volk 58:43
Well, thank you again.
Margo Fowkes 58:45
Yeah, thank you. It was lovely to talk to you.
Victoria Volk 58:48
And remember, when you unleash your heart, you unleash your life. Much love.
Childhood Grief, Grief Stories, Grieving Voices Guest, Grieving Voices Podcast, Parent Loss |
Lizzy Flavin | Never Fatherless
SHOW NOTES SUMMARY:
Lizzy and I share a similar loss experience. So much so, we both experienced the death of a grandmother, father, then uncle – in the same order.
We have a conversation about how those losses have shaped and shown up in her life, from her perspective of being in her early 20’s. Also, being only ten years past the death of her father, she shares what’s helped her throughout her youth.
The conversation also turns to spirituality and faith. Lizzy shares grief that she feels around the separateness that exists within faith communities. And, she shares how she’s working to study and contribute to a greater conversation around the topic.
If you’re a teen, into your 20s, or a parent of a teen/youth, I encourage you to listen to Lizzy’s perspective of the loss of her father when she was 12, as well as the other losses she experienced before that and since that loss as well.
Mentions:
Connect with Lizzy:
Need help?
Suicide Prevention Lifeline to chat or call the Lifeline at 1-800-273-TALK (8255) or reach out to Victoria
Victoria Volk 00:00
Welcome to another episode of grieving voices. Today, my guest is Lizzy. And she reached out to me to be on the podcast, and we kind of have a similar story of loss. It was my grandmother, and my father and the uncle as well. And Lizzy shares that experience as well. So, she’s going to speak to it from her perspective as a 20 something, right? Correct. We’ll also dive into her faith and how that’s been shaped by those losses. Thank you for being here.
Lizzy Flavin 00:39
Yes, thank you, Victoria, for having me here. Lizzy, I’m 21 years old, and I grew up in Arizona. Yeah. And I’m really excited to be here today and get to talk with you.
Victoria Volk 00:48
When we spoke briefly, before we started to record you had mentioned that you lost your grandmother when you’re seven. Was that your first significant loss?
Lizzy Flavin 00:57
Yes, it was. I think at that point in my life, I think maybe I’d lost a pet or something. I maybe been to a funeral for someone I didn’t know. But it was the first time I really experienced someone that I knew and cared about being gone. And it was hard because I hadn’t had a very close relationship with her. She lived far away to another state, but I didn’t get to see her much while she I don’t think I ever got to visit her actually while she was sick. And so that was really hard for me not really getting to say goodbye even though I was so young and didn’t fully understand or have like the depth of relationship that I would have if she stayed alive later into my life. It was definitely hard to find out that she was gone without really having gotten to see her and say goodbye.
Victoria Volk 01:49
And then your your father was he, was, I know he passed away of cancer. Was it colon cancer?
Lizzy Flavin 01:57
Yes.
Victoria Volk 01:58
Same cancer as my dad had. I’m curious. How long had he known? Like when was he diagnosed?
Lizzy Flavin 02:05
Yeah, so my dad was diagnosed with colon cancer when I was 11. And he was sick for about 10 months. And at the beginning, at least from my perspective, it seemed like it was going to be a pretty quick surgery and then he was going to be done with it. It’s kind of how my parents had explained it to me. And I think even then, that was their understanding, but there just continued to be complications. And he continued to, you know, get better and worse over time, and then yeah, it was about 10 months later that he passed away.
Victoria Volk 02:38
First of all, my heart goes out to you I know what that loss is like I don’t know what it was like for you. So during that time, because I was a little bit younger my dad it was he was it was two years he had stage four when he was diagnosed and there was really nothing they could do but he lived for two more years and he passed away when I was eight so much of my childhood he was sick. What did you do you recall I mean and that’s still quite a little bit fresh for you because again, you’re 21 I’m much further out from my loss? What has that reef I hate to say the word journey because it’s so overused but what has that been like for you?
Lizzy Flavin 03:20
Um, It’s definitely been a long it’s just changed so much over the years I think initially when my dad passed away it was very hard and intense but I also think I been in my family talks about this a lot that we and I think it’s common with cancer that people kind of start grieving before the person’s even died and so like that process of kind of started maybe a few weeks before for me when I found out there wasn’t really anything what the doctors could do my dad was already in a pretty bad state where he couldn’t really communicate with us much and so that Yeah, there was a season where everything’s kind of blurry looking back honestly, but I do remember times even in that where I was confused about how okay I wasn’t certain moments and I didn’t know if that was right it felt like I should just always be upset but I think maybe the way we’ve been designed in some ways is to have that relief and have a little bit of being able to continue with life even when some time there’s a lot of back and forth with that of like times that I was upset that I didn’t think I should be in timezone I felt calmer than I thought I should be and especially as a child like I didn’t fully know how to process that but my family definitely helped a lot. And then like as I’ve grown past that, obviously like it gets better but it never really goes away and so there’s still times when it really hits me hard, and they don’t know necessarily how to communicate that to other people. But I do spend a lot of time in prayer in those times when it just feels like, you know, I’m not necessarily dealing with the death itself anymore in the same way that I was. But just the fact that I’ve spent my entire teenage years any part of my adult years that I’ve been without a father, and sometimes that really doesn’t feel fair. So, I think those are the moments that it hits me is when I see, oh, that’s a moment when my dad would have been there, and he’s not. And kind of, that’s something I still have to work through from time to time. And I think it gets less and less frequent as time goes on but it still happens.
Victoria Volk 05:45
Yeah, and it will continue. It’s not that I hate to say that, but it just it changes, it just changes over time. You know, you get married, you won’t be there. My family got me a beautiful little locket with my dad’s picture in it. And that’s what I wore for my jewelry. When I got married. It was incredibly special to me. So yeah, it just changes over time. You have kids, grandpa’s not there. The seats always gone at the table. Right? It sounds like to me that communication is actually a really important tool used actually used in your family to navigate that loss and share how you were feeling. What is that? Correct? mean? That’s the kind of sense I get that communication was really utilized during that?
Lizzy Flavin 06:34
Yeah, yes, I definitely agree with that. I think there were times, again, like, it’s always a mixture of like, there were times when I didn’t really feel like our family could communicate well and like be open with each other, just because of the different ways that we were all handling it. But there were also times when I was able to sit down with my mom or with my siblings, and just, yeah, share what we were feeling and know that other people were in the same boat. Even recently, like we’ve been able to have conversations, we try to celebrate or spend time together on certain anniversaries for my dad, like his birthday, the anniversary of the day he died, we’ll just get together and remember him and spend time together and sometimes talk about like where we’re at with it. And I think we probably talk less and less about I don’t know, it’s different every year. And the way it impacts all of us. It’s like continues to grow and change. But I think being able to grieve together and deal with that loss together has been really helpful and really a blessing that I know not everyone has.
Victoria Volk 07:43
Like I didn’t. So yeah, that is wonderful. Because I think when we’re able to communicate with how we’re feeling honestly and openly that brings healing, and then you’re healing as a unit as a family during that time to worry, even before your dad got sick. And even maybe when your grandmother passed, as your family always been very strong in faith.
Lizzy Flavin 08:07
Yes. So yeah, my we’ve always gone to church together as a family. I mean, we did growing up, of course now, I’m the youngest of four. So, all my siblings are adults, and they all kind of are still involved in different churches. But yeah, it’s always been an important part of our lives. It was definitely something that we talked about around like my grandmother’s death. And then something that, yeah, it’s really important to my parents, and they always taught us to like read our Bibles and brought God into important conversations. And that was really impactful to me, especially like thinking of my dad’s legacy, like continuing to walk in the faith that he helps me to establish
Victoria Volk 08:48
After he passed, how did that change? If at all?
Lizzy Flavin 08:51
It’s interesting, I guess, to me, like, trying to think through that, because I think when my dad was sick, there was a lot of conversations among my family, and especially with our friends about like, prayer for healing, which was definitely, yeah, it just brought up a lot of questions for me, when, you know, he wasn’t healed. And a lot of people we knew had, like so much confidence that he would be, but I remember, you know, my parents said, like, we trust God, or my mother actually talks about a conversation she had where someone asked her like, why don’t you or I think she was telling us about someone else actually, now that I think about it, but someone had said, like, why aren’t you trusting God to heal this person? And she’s a non trusting guide, whether he heals this person or not, and I think like that was her attitude toward my dad’s illness. And I’ve tried to take on that attitude to and it’s definitely a challenge sometimes even looking back like I said, and sometimes I just asked God like, Why Why can’t I have a dad in my life anymore? Like, this is really hard, but I do really believe Believe that he’s worked through that. And they think like, after losing my dad, that was something specifically that I had to work through. But I also, I knew that I really needed God, and that I wasn’t going to be able to deal with such a huge loss without my faith and without a relationship with God. Continuing and yeah, I really came to rely on God even more through my dad’s illness. And then after he passed away, and just looking to God, like I said, I look to him for emotional support, as I’m dealing with grief. And I look to him for, you know, with my questions and with Yeah, sometimes things that I would have looked to my dad for, because he was such an important source of like, someone I could ask questions to, and someone I could turn to you and I got anxious, and, you know, as you know, feel protected by in different situations. And so I’ve transferred A lot of it over to God. And it’s definitely different. Because God’s not like a physical person in my life. But it he’s also, yeah, I’ve just learned that, like God is ever present with me. And that’s something my dad never could have promised. And I think that’s really special. And it’s really helped grow my faith, even though it’s been difficult.
Victoria Volk 11:18
I’m interested in hearing your side or your perspective, because when I was a kid, I believe in granted, I was eight, no, even less than 12, you probably maybe know differently. But when I was eight, my dad passed away, went to the funeral is in the ground. And I thought, that’s what happens. When you die, you just go into the ground. And we did go to church, but granted those aids and big concepts, you can’t really grass, necessarily at that age. But I guess how did that when I’m thinking about my experience, and how that loss really took us out of the church, like, I blamed God, right? Like, as you’re taught, like, like you just said, and my mom had this firm belief, like, omega, he’ll be fine. They’ll do what they can. And when she realized that that’s not the case that he will die. She was devastated and crushed, and really didn’t know how to cope with that. So we fell out of the church. And that was the case for me until I was in my cell, I was probably till I was like, 23, my life was kind of a did a nosedive. Until back to, to life on faith again. So I can speak to that side of it, when you don’t have when you lose face. When you come back to it. I love that growing up that was still a part of your grieving process that that was something that was made valuable and important, and a part of healing. Because I know for a lot of people, when someone they love dies, they want someone to blame, right? You want and who is the easiest of ln is God, you know, because you’re supposed to heal people, you know. And so yeah, I struggled with a lot of those emotions, but I didn’t have the language, I didn’t have open communication like you did. And so I was a wonderful blessing that I just want to reflect back to you. Because I really think that whether you realize it now or not, that does and has an impact on the decisions that you make in your life and the choices you make. So, for anyone listening, it’s it’s there is no like linear path to losing your faith and finding your way back to it again. But often it’s, you know, it’s going to be take pen and scribble and doodle. And it’s that’s that’s what it looks like. It’s not a straight A to B point A to point B. So as you’ve been navigating this loss of your father, as it’s changed over time, and as you’ve gotten older, I know you had mentioned to that your uncle had passed away the same way. Is that correct?
Lizzy Flavin 14:09
Yeah, it was very similar. He actually he had a different form of cancer, but it was, yeah, it was very much felt like going back into losing my father in so many ways. Because he was my dad’s brother. He was definitely someone from my dad’s family had stayed very close to her family. After losing my dad. He was an important part of my grief process and had been, you know, really there for our immediate family when that happened, and of course, was also a big loss for him. And then he actually had cancer for about six years, and then passed away in 2019. And so going to visit him and seeing him in hospice care like my dad had been, he was in so my uncle was in home and my father had been enough hospice facility, me passed away. Yeah, just seen him in such a similar state was really kind of brought me back to that earlier loss. And then I think having lost my father and really knowing deeply what that meant, and saying goodbye to him for the last time, was really impactful and really challenging knowing that, like, it was only a matter of time. But I think also, again, having had that loss before and the blessing of a family who I’ve helped me continue our relationship, the Lord and leaning into I, I felt more prepared for another loss like that. And really, and also knowing, I think, even clear as an adult, like where, and just believing that my uncle would be in heaven with God and with my, with my father, because they knew, you know, they’re freaking God, that that’s what Jesus would do for them. And that was really encouraging to me in a really deep wave. And when it hurt that, yeah, that they weren’t just going into the ground. They had a continuation of life, it’s just I didn’t get to be a part of it for a while. Yeah, so I think definitely a challenge, but also something that I was prepared for. And I think in some ways, it’s like seeing someone suffer through illness can be so hard. But I think I’ve been very blessed, in some ways, by the fact that I’ve, you know, none, none of the people in my family that I’ve lost have been sudden, like, I’ve gotten to kind of prepare myself and say goodbye, and yeah, and then know where they’re going afterwards is really, really encouraging to me and has made such a big difference.
Victoria Volk 16:55
It’s really just kind of bizarre how similar stories are, yeah, it’s just really strange. My uncle wasn’t in my life. After my dad passed, he was his brother as well. But when I found out he had brain cancer, I went in, I knocked on his hospital door, not knowing if he would want to even see me or recognize me even because it had been almost 30 years to the day that my dad had passed. And it turned out to be one of the most healing experiences for me to revisit that relationship, to open up my heart to Him again, and when he had been absent. And yeah, I felt a connection to my dad that I had not felt in the 30 years prior. So I’m interested in learning what your experience has been, you know, there’s faith, and then there’s spirituality. I don’t necessarily view them exactly the same. I feel like for me, spirituality is almost more, there’s almost a deeper knowing a deeper connection or a deeper feeling is what it’s evolved for me. So, what role does spirituality play for you? And for your experience?
Lizzy Flavin 18:18
Yeah, that’s interesting. I don’t know.
Victoria Volk 18:20
Like, do you feel you know, when we talk about faith, we talk about God, right? spirituality is, it’s no our guardian angels. It’s like the people that like our guides, like people that are ever present. And all around us, you know, kind of watching over you, your guardian angels, things like that. I guess I it took me a long time to get to that probably only in the last five, six years, to be honest. It’s like faith came first. And then my spirituality came, I guess, where are you sit with that?
Lizzy Flavin 18:58
Yeah, that’s interesting. Um, I got a lot of conversations throughout my journey with loss about Yeah, like people sharing things like, oh, like your dad can see what’s happening or like, like, they’re still with you, in a way. I mean, I think I’m still at a point where that’s kind of confusing to me, like, I don’t know, and even thinking about guardian angels, like, I don’t know, like, you know, whether that’s a person who you’ve lost or someone different that God sent to help you like, I definitely think that’s possible that that’s a way that that exists, but it’s not necessarily something that I’ve, I haven’t quite gotten to the point you’re at. It sounds like because i think i think in some ways, I’m just afraid of being wrong that I’m going to like comfort myself with some idea and then find out later like, no, that’s just something that was in your head or like something sweet that people told you. Yeah, I guess. I don’t know yet. Like whether yeah, it’s just I guess, not something that I’ve really chosen to lean into yet. really focused on for myself.
Victoria Volk 20:02
You might be interested in listening to I’m trying to think what episode number it is. But it’s with Victoria Shaw. And she is my podcast. And she was on recently actually, the episode just went live, I think three or four episodes back, but she is a medium. And she’s also a licensed clinical therapist. But she’s a medium. And we talk a lot about like, just this, really tapping into our, our intuition and our inner knowing. And, but how it’s, it’s, it’s deeper than that it’s this spiritual guidance. So you might be interested in that episode. Again, like I said, like this is not something that I really leaned into myself until maybe five or six years ago. And it really wasn’t until that experience with my uncle, that just really had a profound experience in it for me when it comes to feeling a connection. Feeling that connection to my dad that I had not ever felt, you know. And it was almost like, there’s a thing to like, when I found out he had brain cancer, I could have easily just been like, isn’t been in my life for 30 years, why would I go see him? Why would I want to talk to him, right? But I felt a pull. Like I felt like I had to go see him. Like it was something I had to do. Call it synchronicity, call it serendipity call it spiritual guidance. But when I went there within 10 minutes, my cousin who I hadn’t even remembered meeting before, from Massachusetts, walked through the door. And so did his daughter, who I had not seen either since I was a kid. And so it was like this almost immediate reunion. And it was amazing. It was an amazing experience. So anyway, it’s something to maybe just open your heart to and see where where you’re led.
Lizzy Flavin 21:57
Yeah, if I can add something that came to mind as you were sharing?
Victoria Volk 22:01
Yeah
Lizzy Flavin 22:02
I do think well, like the right time to say, I think the closest I’ve come to that, that sort of experience and those things you’re describing it I would describe my experience with Yeah, sense of like some spiritual guidance and some presence with me would be, I would describe it as like the Holy Spirit’s work, being a Christian and like believing that God is like three persons and one of them is with us as especially like with believers as this spirit inside of us. And I think I’ve definitely received some comfort through that. And some guidance. I think the Holy Spirit has helped me come to like some of the conclusions I have in the piece that I have in regards to death guards to like people I love. And so yeah, I know, that’s not quite the same as what you’re describing. But I think there is some some, like spiritual guidance and some like spiritual presence. It’s so something so beyond the physical that’s really present with me. And again, even that is something that I want to be I don’t feel like I lean on the Holy Spirit, or, like, I want to grow in that even Yeah, so that’s, that’s what came to mind anyway.
Victoria Volk 23:20
No, I and I totally, I, I resonate with that, too. I do. I think for me, it was like, I think to like our while grief for me like, but he pretty much put a veil over my inner knowing, like I I don’t know, I’m asking, I’m actually interested in learning to from you. Do you feel like you’ve grown in a better understanding of who you are and of yourself through this? Or do you feel like you’ve you’re almost like moving further away from yourself, if that makes sense?
Lizzy Flavin 23:55
Yeah, that does make sense. I think the I think there’s probably some of each, there’s definitely been times and I feel kind of detached. And because i think i think grief impacts us so heavily that there’s times when we don’t feel like ourselves. And so that’s been a part of it. But I also i do think overall I have really gotten to know myself better through this and part of it is a certain level of independence that comes when you lose someone that integral to your life. You know, since my dad passed away, I can’t just go to him with my questions and assume that he’s right anymore. I have two processes myself, and I definitely like my mom helps me work through things and other people in my life. But I I think I’ve become a little more independent in the way that I think and the way that I make decisions through not having that person who in my life was really probably my main source of guidance and stability even in some ways and so I’ve really learned more what I think and what I believe and also grow And like, Okay, how do I take care of myself and like, walk through like these difficult seasons? And like walk through not having these people in my life? I think, yeah, it’s all been a journey of getting to know myself and getting to kind of work with myself in ways that I haven’t had to before with each loss that’s come,
Victoria Volk 25:22
Has anything else helped you along the way? Other like, has it just been your faith that you’ve leaned on? I don’t want to say just your faith, because that’s, I mean, it’s huge. But aside from faith, in your prayer life in your family, did you go to counseling? Or were you offered counseling or, you know, any other healing modalities that you’ve found helpful? Or that were a priority? in your life?
Lizzy Flavin 25:51
Initially, after my dad passed away, counseling or like support groups weren’t really, I think, on my family’s radar. So, we did have a lot of family that supported us, but it was definitely Yeah, it was, you know, they weren’t, we didn’t have like professionals really helping us work through it until I think about a year or two after my dad died, we joined a grief support group through Hospice of the valley. So me and my mom and sister, were part of that. And that was so helpful to me to just go to a group once a week and talk with people who had had similar losses, my sister and I were in like a team group. And so it was a lot of people our age who had lost parents, or other family members, close friends. And it was just so helpful to talk with people who understood and who had similar experiences and hear about bears and talk about ours. And just know like, even if we weren’t directly talking about our grief, like these are people who understood and didn’t feel like they had to walk on eggshells around us, but also didn’t, you know, weren’t going to be insensitive to our grief either. And then also our leaders who helped us walk through exercises to kind of process I agree, I think about different ways to heal and still remember to that was really helpful. And then later on, think I was about 14, when I started going to counseling, not specifically for grief, I was dealing with a lot of anxiety at the time and some different issues. And so, I walked into that my first experience with counseling was kind of difficult, I didn’t feel like I felt like it was just a lot of like work. And I didn’t know if it was really helping me. And then my next counselor was really helpful in processing, the other things I was dealing with, but also the loss of my father and how that was impacting me. Yeah, so those are some different tools that I really, really impacted me, I think finding a counselor or therapist who can really help you is so such a blessing and so incredible and helpful.
Victoria Volk 27:56
What did grief look like? on you, as a teenager? Like if someone would have looked at you could they have seen that you were a griever? Like, what, what how did it manifest in your life at that age?
Lizzy Flavin 28:09
As a teenager, there was yeah, I don’t know, how many people knew I started blogging at some point in my teen years, actually, about like grief and living without a father. And that was something that helped me kind of express what I was feeling and kind of worked as, like a public journal. For me, it wasn’t something a lot of people read. But it definitely was a way that I expressed my grief and, you know, post on social media, I think Or another way that I kind of express my grief and just let people know, because I think one of the hardest things for me, especially as a teen was like having to tell people because I was always nervous about their reactions, whether like it would just make them uncomfortable, or whether they’d be overly sympathetic or not sympathetic enough. And so I think like getting it out on social media and being like, like, no, this I don’t have to tell you in person, but also getting to share like what he had meant to me. I don’t really know if someone you know, could have looked at me and seen like grief, just in everyday life. But I think there were situations coming up to like all the time where we I know where the question would come up, or where yeah, just different things. What impacted me in a unique way because of my grief. And there’s always this question of like, do I invite people into this with me and like, share this or do I let people have very experienced and try to kind of hold back and deal with this on my own and so sometimes I would, I turn to my family with that and sometimes it was literally just me kind of taking some time aside to be like, Okay, this, you know, whether it’s Father’s Day or a conversation I have with a roommate about their father or their experience with loss, something that kind of brings back something that’s like So much bigger than where the conversation already was. And I have to either bring that up and face whatever reaction people might have. Or either like bottle that in or step aside and process it on my own.
Victoria Volk 30:15
I’ve learned there are two types of people in life, either internal processors or external processors, nexternal processors, they need to talk it out, they need to talk, talk, talk. And that’s where talk therapy can really help someone who’s an external processor, it’s like they have their awareness and their insights, as they’re talking. They need to talk in order to get those, feel those and have that awareness. But then there’s internal processors, and I’m guessing that you’re an internal processor like me, where we kind of need to go inside ourselves and be alone with our thoughts, the process and just the fact that you started with a blog, I’d actually journaled that’s when I really got into journaling is when I was like, when I was a kid. And I’ve been journaling ever since. But I grew up in the age of dial up internet. We didn’t have there wasn’t social media, there wasn’t really blogs. I didn’t even have internet at home. So you know, it was like at school, very different time that I grew up in. And so I think that’s a huge benefit to someone growing up today, children that name who’s a parent today actually have this huge broad network available to them, which can be good. And it can be bad, because in my line of work as a group recovery specialist, I want to share this with you too, because you said you know, you don’t know who necessarily to share it with is we don’t want to share with just anybody, right? Because they can say hurtful and harmful things that actually make us pull back and isolate even more, because we don’t feel safe to share. And so, we want to look for someone who really doesn’t have any skin in our game. No, I know your family’s a huge connection for you. And that’s, that’s great. But sometimes the relationship is no, not sometimes always. You can have like you and your siblings, your mom, you all experienced the same loss. But your experiences very differently. Your experience is very different, because your relationship is very different. And that was my experience, too. I was the youngest, my siblings were five and nine years older. So, our experiences were very different. So, you can have the same loss and very different experiences within a family unit. So, they might not be necessarily the best people to share with because they are perspective of that person might be very different from yours, because their experience was different. And so that comes to friends and everything, like someone that doesn’t have any skin in your game who you feel safe sharing, and someone who is safe, who has a heart with yours, like we say in grief recovery is someone who’s not going to criticize, analyze, or judge. And so someone who really can just your heart with yours, just listen. Because that’s all people really need to do. Just listen. And your story matters, your experience matters. And that’s why I started this podcast because whether you’re 21 or 41, you’ve had the same type of loss, our experiences are very different. And your perspective that you bring to my listeners matters. Because there might be some 21-year-old, 20 year old, a 15 year old who’s listening to you and hearing your story. And they resonate more with you because you’re closer to their age, I very much remember what 21 felt like I was lost, I was absolutely lost. My grief had me lost for decades. But it doesn’t have to be that way. We all but we all find our way. In our own time. Now, I’m to a place of a goddess. But then we might have another loss that just opens up that can of worms again. You know and for your uncle. That’s what that’s what that loss did my uncle, same thing. It’s like that’s when I realized I wasn’t okay. Like I still haven’t processed a lot. From all those other losses I had before I still had a lot of work to do. And that’s what that loss made me realize I’m not okay. And that’s what led me to grief recovery. And so, it’s an ongoing process. You’re going to have more losses in your life, that’s a guaranteed and because grief is cumulative, and it’s cumulatively negative. It just all stacks up, but so does the healing. The things that we participate in that help us to heal those wounds. Not to, and aid them not to like, to sugarcoat what’s going on. It’s being honest with ourselves. So we’re really feeling. I think that’s, I think we’re out of integrity the most when people ask, you know, how are you feeling, I’m fine, and you’re not fine. And you know, you’re not fine. Like you’re out of integrity with yourself. When you’re out of integrity with yourself, that doesn’t feel good. And so it’s this ongoing suffering that we caused ourselves just by not being honest with how we really feel. And it’s not being apologetic about it, like you don’t have to be sorry that you feel bad. Like, if a situation is too much, it’s walking away gracefully. And saying, I need this time for myself, I need to, we have, you’ll have instances that the rest of your life like that, with age comes wisdom. That’s all I can tell you. Things change, life changes, reach changes. Grief is grief, it just looks different over time, as time just passes, it doesn’t do it. Time doesn’t heal, it just passes. So, what is grief taught you so far?
Lizzy Flavin 36:06
I think we’ve kind of already touched on a lot of the things I was thinking about with what it’s taught me. But I think it’s this interesting mix of like independence and dependence that I’ve kind of learned through the process of like, I had a conversation with someone a few years ago, who had been through a similar loss. And I he said, like, I think everything that you missed from someone you’ve lost is something you have to especially like with losing a parent is something you have to like learn to do yourself and like be more independent. And I think in some ways, that’s true. But also, I think we really do need other people and other support to help us with those things. And times, because yeah, I just don’t think I could continue, or at least like be in the place I’m in, which is, I’m really blessed to be in without the support I’ve had from others, whether it’s, you know, my mom still being one, like stable parent figure in my life, or my brothers kind of stepping in and providing some of that, like sense of safety in certain situations, or helping me seven people throughout my family helping me financially, and to be able to go to college and have the resources I need to be the student that I want to be I really, like I’ve learned that there’s a lot that I can do on my own. And that i i do have the strength to walk through so much grief. And that’s but that’s all with some level of support. Like I can guess I guess, yeah, it’s taught me that, that I need people and also that I am strong as an individual. But then I like, I don’t know, if that makes sense.
Victoria Volk 37:55
Because yeah, it’s like you’re strong as an end of it. You don’t have to be strong for everybody and yourself, you can still like it’s not weak to ask for help. And that’s what I’m glad you brought that up, because that’s a good point to bring across, and how, if someone were to give advice or counsel like that, who has not really dug into their own grief, that’s where they can say something that could really send someone else into deep isolation. Because if you were to take that to heart, right, like, you’re just gonna have to do this on your own, like, you’re gonna have to learn all this stuff on your own, and you really internalize that you would have a really difficult time asking for help you think, well, I guess I’m just on my own. I guess this is how life is, this is what it’s like. Because that person is going to give you advice and their perspective based on their personal experience, right. So, if they have not had the support in their life, if they had not felt like they ask for the support in their life, that’s the perspective they’re bringing to your conversation in what you share. And that’s why I say it’s really important to choose wisely, who you communicate with your grief about. So, thank you for bringing that up. And what has led because you have a podcast, it’s called loving diversity podcast, and I was kind of I was poking around a little bit and it’s about inclusivity that word, inclusiveness? I think so. inclusiveness of, of faith has these experiences of grief and loss is that what shaped you into this mission or this passion for starting this podcast? And tell me a little bit about it?
Lizzy Flavin 39:42
Yeah, so I was actually inspired to well, I guess, going back even farther, and I think for a long time, I’ve been very aware of kind of and just like curious about honestly, the differences, just how the church seems to be kind of divided up into, you know, we have like, and it’s not, it’s not that anyone’s necessarily labeling themselves this way or doing this intentionally necessarily, but we tend to have kind of like, you know, churches that are, for a certain are tend to be filled with a certain demographic, racially or culturally or like economic status wise. And they that’s kind of how we get even as Christians within Christianity, we tend to gather based on other things that we have in common. And as I’ve read scripture and studied church history, I’ve noticed like that’s not how the church started, like the church churches, and like, the house churches that started in the first century, really broke a lot of the barriers that the rest of culture had around socio economic status, and race, and gender, and age and all those things. Like the church was a place that broke that in a unique way, early on, and now I feel like there’s so much division in the church, whether it’s based on different doctrines, or especially Yeah, like socioeconomic status, or race, or just preferences in worship, because that’s something that’s like been on my mind for a long time. And there’s some grief in that of like, why is the church to say like, why can’t we all be one like, group of Christians like God seems to have intended us to be and then in March of last year, with all the dots when I really became aware of issues with racism in America, and really allowed myself to start to process that and see like, Okay, how can like, first of all starting to understand the reality of the situation and grieve the losses that were happening in that time just for this if people you know, not people I knew, and then think about, you know, what’s my part in this? And how can I help to address this and like, help people respect one another and build a better culture, I really started thinking about the church again, quote from Martin Luther King, Jr. Where he said, essentially, that the church is one of them that are the most segregated are 11 o’clock on a Sunday morning, I think is what he said was the most segregated time in America. And that had really struck me hard. And anyway, as I was processing, I was thinking, Okay, how can I address this, like the church’s issues with division, and I started thinking about a podcast because I was like, I want to have conversations with other people. I don’t want to just talk about from my perspective, because that’s not the point. And I don’t even know that much. But what if I could welcome other people in to share their stories into to speak to their own experience, and to speak to what they’ve learned and share their experiences, feeling included from certain are included or excluded from certain church communities? And how could leadership or people around them have avoided that decision and help them feel like a part of something and like they were welcome, just as a part of God’s family rather than having to fit a certain pick fit into a certain category in order to be part of that community?
Victoria Volk 43:23
I love that. I love that idea. What are you studying in college?
Lizzy Flavin 43:27
Biblical studies
Victoria Volk 43:29
Awesome. Okay, well, that, yeah, that follow that passion, wherever it takes you that interest, that curiosity, curiosity is a big thing in life. And I think we don’t ever lose that. That’s something that we kind of just tend to put on the back burner is what makes me curious. Follow that. Follow it. I love that idea. If people want to reach out to you, and they want to learn more, how can they find you?
Lizzy Flavin 43:58
So, I’m on Instagram, you can find me at loving diversity podcast. I also, I don’t use this account as frequently as I used to. But my blog from my grief experience that I was using in high school is never fatherless. And I also have an Instagram account for that. So, if you’re interested in seeing some resources, it may become more active again. But if you want to read more about my story that’s there. And you can feel free to message me through either of those accounts.
Victoria Volk 44:29
Thank you so much for sharing your story, which deeply resonates with me, and I will stay connected with thank you for being here.
Lizzy Flavin 44:37
Thank you. Thank you for having me. It’s been great having this conversation.
Victoria Volk 44:41
Thank you for listening. And remember, when you unleash your heart, you unleash your life. Much love.
