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.
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.
