Kate Bowler: Hi friends, it’s Kate and this is Everything Happens, the summer edition. And today I’m so excited for you to meet two of my friends who are doing great work, despite the fact that they work at my school’s rival, UNC. Just joking, I love everyone. I love all the schools. I almost love them all equally and this conversation is one of my all time favorites. You’re going to be meeting some friends whose words have stuck with me for such a long time. Don and Justin are clinicians. Don is a psychiatrist, Justin a psychologist. So they’re in the trenches with people, seeing people, talking to people all the time, and they wanted to find a way to actually help people who were grieving. And then that work kind of evolved. Sometimes we talk about grief and loss, and we tell it like it’s a story only about the past, which makes sense. Like, oh, look, that’s over. It’s gone. He’s gone. She’s never coming back. Our dream job will never come around again. Our kid has moved a few states away, and we used to have dinner together every Sunday. Or when dad died, he seemed to take everything with him. But sometimes we lose more than the past. We lose the future. The people we imagined ourselves being and loving that little glimmer of who we could have become if everything had not come apart. And that way, loss is abeout the past and also the present and the future. And today’s episode is about how we start to swim around in the deep waters of where that leaves us: sometimes drowning, sometimes swimming. And I wanted to see what Don and Justin have been up to since we last spoke on the podcast in 2020. And it turns out, of course, they are still doing incredible, thoughtful, practical work. So stick around after this conversation to hear an update from Don and Justin. But without further ado, my friends Don and Justin. And here’s what they sound like, so you can tell their voices apart.
Justin Yopp: Hi I’m Justin Yopp.
Don Rosenstein: And hi, I’m Don Rosenstein.
Kate: Dr. Don Rosenstein and Dr. Justin Yopp both work at the University of North Carolina. Dr. Don Rosenstein is director of the UMC Comprehensive Cancer Support Program and serves as the head of General Adult Psychiatry. He came to UNC from the National Institutes of Health, which is a really big deal. Doctor Justin Yopp is a clinical psychologist and assistant professor in the Department of Psychiatry at the University of North Carolina. He came to UNC from S.t Jude Children’s Research Hospital, which is also a really big deal. Don and Justin co-lead the Widowed Parent program at UNC and coauthored the book, The Group: Seven Widowed Fathers Reimagined Life. Don and Justin, it is such a gift to be able to talk with you today.
Justin Yopp: Kate, it’s wonderful to be here. We’ve been looking forward to this and are really excited to have this time with you.
Don Rosenstein: And we’re also fans of your work in a big way.
Kate: Aw, thanks, friends.
Kate: Well that’s it. We can wrap it up. That’s pretty much all I, needed, so thanks, thanks so much, bye bye bye! You’re both clinicians who work specifically with cancer patients. Don, I think there’s something really special about working with cancer patients. What kind of care do you think they need?
Don: You know, everyone comes to their cancer experience with their unique background, life trajectory, set of expectations. It’s just so clear the longer I’m in this business that the most important part of this work is understanding who is going through what they’re going through. There are lots and lots of ways in which the cancer experience, the breast cancer experience, the lung cancer experience, whatever it is, kind of has a lot of similarities from case to case in terms of, you know, the choreography of diagnosis and treatment and so on. But what it means is, it’s infinitely unique and special and a real privilege to try to. Uncover that and to appreciate what, what this all means for the person going through it. Because every time I make assumptions about it, I am humbled.
Kate: I like, too, that what I hear in your answer is not like, “meaning,” hear the quotation marks. But here like, meeting is like a gritty… it’s a gritty thing that plays out in, like, all the particularities of people’s lives.
Don: Yeah.
Kate: I think, too, there’s a story that we’re increasingly as a society realizing is a myth. And I certainly believed it, which is that young, seemingly healthy bodies are immune to cancer. But that isn’t what you see, is it Justin? You’re nodding here.
Justin: No, we we don’t. So it cancer strikes all ages, including kids, young adults and young parents. And to kind of piggyback on what Don said, I’m just so struck at how when we have opportunity to meet with people very soon after their diagnosis, just how their lives are turned upside down. And like so many of us, we have this imagined life of how things are going to unfold for us and how things are going to go. And then in all kinds of ways, during our lives that, you know, that that road changes and there’s a lot of loss there, right? There’s a loss of your expected future. There’s a loss of your health security. And along with the more tangible losses. And, you know, Don and I are, I think, very grateful we are in the position to help people when they are at their lowest and really when they’re trying to, to chart a new path.
Kate: There’s no clear math for enoughness. You know, you don’t get to be like, all right, well, you’re this age, congratulations. You’ve experienced the summation of… There’s no easy way to, like, help people achieve that feeling of completeness when like. It. Just like we’re always… Just hungry. Like hungry to live.
Justin: Yeah. And. And Don and I both have patients who are in their 70s and 80s and above, and and they’re receiving treatment and they’re pushing forward like anyone else. And really, not that they’ve had enough of life by any means. That being said, when it is a young person who has cancer or certainly a young parent, the unfairness of this and the potential for future loss and tragedy is is certainly more striking.
Kate: Yeah, I always picture like the people who stand in line at the mic that I’ve met like a zillion of them, and it’s like the mom with the little baby on her hip. She’s she’s in the world I understand, so, but she’s like stage four colon cancer. And I know there’s like a less than 10% for someone like that. And all she wants to know is like, yes, but…?
Justin: Right? Yeah.
Kate: A few years ago, you had a series of young moms who died at the same time, leaving bereaved dads in their wake. And you wanted to refer them to a support group? What did you find?
Justin: Yeah, this happened when Don and I had several young mothers who sadly died from their cancer, and we got to thinking about their husbands and wanted to refer them to a local support group and for widowed fathers, and very quickly found that that type of support did not exist. And it didn’t take much for us to begin to imagine what a young father just lost its wife and its children at home, grieving his own loss, trying to help his children grieve, and trying to even imagine the day that those men would be really be hurting. And so Don and I took the opportunity and thought, you know what? If there’s nothing else out there, why not just start one ourself? And that’s really where I work in the widowed parent program began was with that realization and that decision to put together a support group. But those few men and we found a few others, and it’s actually been ten years now since Don and I started that first support group, and that that was an eye opening experience for. For me and even for Don, who’s been doing this longer than I have to, to really some of the unique pain that these men were feeling and some of the shared pain that we all experience when we suffer, what feel like unimaginable loss.
Don: We didn’t get into this work, kind of, in a sense, intentionally. We got into it because we didn’t feel that we could not do it. In other words, you know, the cancer support program, it that UNC, just just like it is anywhere is, is principally focused on people living with cancer and their loved ones and how you can help them through their cancer journey and hopefully with a really great outcome. I was not hired to be a bereavement expert, right? And, and certainly the leadership of the cancer hospital. I mean, you know, it’s a house of hope, as it should be. And, you know, when you’re talking about young widowed parents, that is, a obvious reminder that it doesn’t always go the way we want it to go. And it’s not really what our day jobs were. And so I didn’t even know the term side hustle until one of the research assistants kind of I heard it once say, so what’s a side hustle and say, oh, it’s kind of like, you know, because so Justin and I did this in the evening and neither one of us was it was a grief or bereavement expert.
Kate: Yeah. So, Don, am I right? You guys initially scheduled six sessions. You’re like well, that’ll that’ll start. That’ll start this off.
Don: Yeah. We had some notion that we would. We would have a time limited monthly support group where Justin and I might give a brief little mini lecture for a half an hour on what do five year olds know about death as opposed to 12 year olds? And kind of. And what do we know about what predicts better and worse outcomes for grieving parents? And then we’d open it up for discussion. And after the first very, very poignant, very painful session that we had where each of the men shared their stories about how they got there, the very next meeting, when we kind of had this little lecture planned out, one of the guys before his bottom hit the seat said, guys, I got a problem. Friday night is the anniversary of my wife’s death, and I thought we would go to the cemetery and have a little moment. But my teenage daughter wants to go to a hockey game with her friends, and I don’t know what to do. Yeah, and they were off and running, and so we just scrapped that. And then I think later, Justin talked about what the plan had been for how many sessions we’d have. And one of the guys in the group said, why, you know, this seems to be valuable and worthwhile and helpful, and so why stop it necessarily? And then it went on for four years.
Justin: Don and I went into it with an idea of what we’d be doing, and we learned that first night and the second night that the fathers had just as much to teach us, if not more than we had to teach them. And really, what they needed to hear from was not a couple of shrinks as much as each other. And so some of the best work that Don and I did was to just shut up and listen and let the men steer the conversation, let the men decide what they wanted to to to discuss with each other in groups. You know, those seven guys, just beautiful men, amazing fathers. Each of them came into this not knowing, you know, what to do from one day to the next and feeling, I think, extremely isolated in their grief and really alone. Yeah. And to sit with other people who could kind of get it and could know what they were going through and didn’t give them some platitudes or didn’t didn’t tell them things that just wanted to make them roll their eyes or, you know, clench their fist. But people who really got it and people who they could celebrate successes with along the way, and who they could empathize and support at the at the inevitable setbacks.
Kate: Yeah.
Don: Not to mention joke with each other in ways in ways that they couldn’t joke with anyone else. I mean, if you were someone walking by the hallway during any one of those, you know, support groups, you would very likely hear some raucous laughter and and they could say things to each other and laugh about it that they would be deeply offended by if somebody else said it to them. But they knew each other well enough, and they knew everyone’s heart was in the right place. And there there were actually very funny, tragically funny things that they all experienced and they can kind of share together. So that was that was actually really amazing to see for us.
Kate: Yeah. We’re going to take a quick break to tell you about our sponsors. Don’t go anywhere. We’ll be right back.
Kate: As a historian, whenever we do like history of mourning and grieving, we always say grief is women’s work. This is the stuff that historically women show up for and make meals for, and have language for and sounds like. So much of what you were exploring was how rare it is to create space for men to dig into language that’s not just handed to them.
Don: You know, I’ve actually wondered about what it is that’s the active ingredient in the group. Because when I’ve studied this, one of the things that’s fascinating to me is somewhat intellectually unsatisfying, but it’s fascinating is that it almost doesn’t matter kind of whether it’s an educational group for a psychodynamic group or a cognitive behavioral therapy group or a faith-based group. There’s something about the group-ness that I think, and the group cohesion that’s most important. And so what was amazing to me is watching these guys come together as a group, become coherent as a group, feel like they were responsible to each other in a way beyond themselves. And if you were a fly on the wall on any of those nights, you would have seen people in pain being honest with each other, crying with each other, challenging each other. Sometimes when they had an experience, they didn’t, when someone describe something that didn’t resonate with the other, but always feeling like we are experiencing something similar and we’re going to help each other. That group-ness is magic when it happens.
Kate: It is. That’s exactly the word I was thinking, like the magic of moving from I to we is a really powerful thing.
Justin: And I think part of that magic was that it gave the that gave these men that chance to give to others, to give to each other. Because for years during their wives’ illness, they had been just been on the on the receiving end of help from others. And then certainly after the wives at die, whether it was casseroles or sympathy or people offering to take their kids to the carpools, all that was needed. But it was also a lot of receiving. And that wasn’t always easy for these guys. And the chance to turn those tables a little bit and, and and to give back and to help someone else and I think was was really restorative and is part of that group, this magic that we were just talking about.
Kate: Yeah, yeah. The move to mutuality. That makes sense .because it does feel terrible to just feel persistently tragic. Like, I was over being tragic pretty quickly. So out of this experiment, you co-founded the Widow Parent Project. What kind of support do you all provide?
Justin: There are tens of thousands of newly widowed parents in this country alone each year, and the number of resources available for these parents is scant at best. And so, you know, that’s really why we created the website with a parent.org. That’s why the fathers and the mothers in our support groups have volunteered to be videoed and, and are on the website speaking in their own words, offering support to those who may who may check out the website. You know, there’s really no reason why support groups and other resources shouldn’t be available to these young men and young women. It’s crucial not just for the widowed parents psychological health and coping and moving forward, but also, of course, for the children. The single strongest determinant of how a parentally bereaved child copes is how the surviving parent copes. And so by helping the parent, you’re by extension helping the child and the family unit.
Don: The fantasy that we had was that there might be a dad who finally got his kids to bed and kind of went upstairs and opened up a computer and kind of googled a widowed father and might land there and actually be able to find something that would be helpful.
Justin: Our hope is that this work that we’re doing locally in Chapel Hill is is going to take root and and expand everywhere. And there’s some signs of that. There are, I think, about 7 or 8 support groups around the country that we know of right now, and those are listed on our website. And there’s really no reason why this shouldn’t be everywhere in our, you know, our personal experience and certainly the testimony from the guys and the women who we have worked with would would tell you, just how invaluable their presence in each other’s lives has been and how it has helped them. Certainly not move on, but move forward.
Kate: Well, and you’re speaking to this historian’s heart that what you’re describing is both experiential and research-driven, which just makes me so happy. We’re going to take a quick break to tell you about our sponsors. Don’t go anywhere. We’ll be right back.
Kate: One of the things I love about doing this podcast is I learn new language, and I learned some really helpful vocabulary from your book. You describe two different types of stressors for grief. Can you tell me a little bit more about the Dual Process Model?
Don: So when we were first getting at this, Justin and I kind of felt a little embarrassed that we didn’t know more about grief and bereavement. And so, you know, we’re academics. And so we tried to teach ourselves.
Kate: Totally. I will learn everything. Leave me alone for one summer. I’ll come back. I’ll have something to say.
Don: Right. We started reading more and Justin came across this model called the Dual Process Model of Bereavement, which was, first written about by two psychologists in the Netherlands, schut and Stroebe. What people who have suffered a substantial loss contend with are two different sets of stressors. One set of stressors has to do with the loss itself. Just what you would imagine. Something you had and lost, a person you had in lost, a job you had, a limb you had, you know, an ability, a house you may have had, you know, looking backwards, missing something, longing for something, needing to deal with what it is like to be currently living without someone or something that was important to you. Y and that was contrasted with what they called restoration oriented stresses, which have to do with restoration of life moving forward. What needs to happen now. So in the case of the fathers in our group, this fit perfectly because they would miss their wives terribly. There would be an empty seat at the dinner table. There would be. There was one story was the kid wanted to, one of their kids wanted to know if they should put up a Christmas stocking for mom after she had died. There just so many reminders of the intact family that you had that you no longer have. And so there was a lot of looking back. But from the day after their wives died, these men had to get their kids up in the morning and bathed and dressed and ready for school and lunches made, and they had to keep their jobs, and they had to do the laundry, and they had to basically keep the trains running with forward thinking, restoration oriented stressors. And then eventually, at some point, consider whether they wanted new relationships. And the idea behind this model is that rather than passing from one stage of grief in a linear fashion to the next, the way things actually work is that people will oscillate back and forth between those two different types of stresses is that if you get stuck in one of those set of stressors or the other exclusively, then you’re going to struggle more. And it’s healthy to go back and forth.
Justin: And you know, when when we mentioned this to the men, they all start nodding their heads and it makes sense right away. You know, they’ll oscillate back and forth within the span of, of minutes. Right? You know, they’re lost in thought about their wife and then their kid is banging on the table because they don’t have any food. And so they have to cook dinner. But that reminds them that mom used to cook a special dinner and they can’t do that. And then it’s this kind of this back and forth, especially early on and over time that attenuates. And the the oscillation back and forth isn’t as dizzying. And it starts to settle down a little bit. And that’s when people, I think, start to feel like they’re getting a little handle on it. And then, you know, a song comes on the radio or for whatever reason, it’s a tough day or a tough moment. And rather than feeling like it’s a setback and questioning, oh my God, what’s wrong with me? Or I thought I was past this, this model, that whole process model accounts for that and allows for that. And it doesn’t categorize it as a setback. And it’s part of the natural flow of looking back and moving forward. No one’s ever over this kind of loss. And when we talk about the guys, I think the realization that they don’t have to be over it or they don’t have to be better, or that they can have a bad moment or a bad day or a bad week. And that doesn’t mean that they’ve backslid all the way back to day one. That’s such a forgiving notion, and allows these men to have, to be compassionate toward themselves and in the group, toward each other.
Kate: Yeah. Yeah. Because it’s so much more dynamic for people who have that kind of before and after, the fault line in our lives have been drawn. And just giving us a little more permission to kind of be on both sides of that line is really compassionate
Don: You can also lose something that you’ve never had.
Kate: Yes, yes. Say more about that, Don. That’s so good.
Don: So the notion there is that all of us have a. An idea of how our lives are going to unfold. And, and we project out into the future. And of course, the future isn’t promised to any of us. But you still have to kind of know, you know, have a general sense that, you know, there’s the next step as you’re going down the steps. And sometimes when you miss out or whatever, then you’re jolted by that. And so this idea of having a loss of an imagined future, was it at the heart of this work? Because I had a professor once in residency, guy named, Jeff Lassman, psychoanalyst. And he was the first one to really kind of turn me on to this notion, but the idea of loss being as much about the future is about the past. And I didn’t get it at first. And part of it was I was working at the time with a with in a VA hospital, with a number of Vietnam veterans who were really stuck, and they kept, session after session they’d want to talk about the things that they had seen or done during the war, and they were always backward looking. And then in my supervision with Doctor Lessman, he kept talking about how their notion of what their life was going to be disappeared in the war. And they don’t, they don’t have a new imagined trajectory, and that’s what they need help with. And boy, is that true of any widowed parent, right? It’s like, okay, I know what I had and I know what I thought I was going to get, but that doesn’t exist anymore. So how in the world?
Kate: Yeah, all my horizons are off yes.
Don: Yeah. Because you got to do it again knowing, knowing more than ever before that it that it’s it’s not guaranteed. So you have to start to try to rebuild a new future, re-imagine your life. And that is hard, hard work that takes a long time and is absolutely possible. But, and we see it time and time again. And that kind of came one night when. I shared my experience with having a son with profound autism, because that was my experience of having to essentially mourn the loss of who I imagine my son would be. And he’s someone different now. But early on, you know, my son didn’t die. But my fantasy of being able to play tennis with my son that did die. And I had to mourn that and figure out a new imagined future as a dad.
Kate: That is so real. Asking people to reimagine hope after they’ve lost something is so different than if you’re just a regular, beautiful, oblivious person who has never, like, felt themselves bleeding out. Getting up is easy. Getting back up is hard.
Justin: Good way to put it.
Kate: And like there’s a such a courage. I wonder how you feel being around these people. And like the way it’s resonating your lives. Like, I love being around that kind of courage.
Justin: Yeah. Don and I, at the end of each session, we usually sit and talk about what we heard from the guys and what we learned that evening. We will sit and talk for a long time, and it it I think it I think it energizes us. I think it jazzes us and which sounds maybe unusual to have that feeling after a great grief support group. And and I think it really informs our work here in the cancer hospital. It’s a different kind of loss here. But there are some parallels. And and the idea that you have to, you know, for people who go through treatment and, and, and maybe get better and try and move forward in their lives to, to trust that they’re okay or to trust that they can move forward when they’ve had the rug pulled out for them already. That that takes that takes a little bit of a leap of faith. You know, it takes the it takes a belief in something in which you don’t have proof. And once you’ve already been bitten, it takes a little courage. And I think that’s part of our job as, as, as mental health clinicians and became the work of group when we were in the groups themselves. For these men to encourage each other to do this and to set examples for each other of how they can take some risk in moving forward, and whether it’s whether it’s daring to love again, whether it’s learning from your peers and seeing people do it, supporting them, and then and then get a little shot of courage from that yourself? Invaluable. Invaluable.
Kate: It sounds too, like, lowering the bar in a kind and helpful way has been also really productive. You championed the idea of the good enough father. What is that?
Don: So Donald Winnicott was another psychoanalyst in England, and in the 1950s he introduced this notion of the good enough mother. And, and and my interpretation of, large literature was that perfect parenting is neither possible nor desirable, that if you’re going to have healthy children who grow up with the ability to tolerate frustration, to handle adversity, to be flexible in their thinking, to kind of handle what life throws your way, and to not somehow have every need met the nanosecond you identify and call for that need. What you have to do is you kind of have to miss a little bit, you know, and so… Good enough sounds kind of like average, but that’s not really what I think he was getting at, that there has to be the meeting of basic needs empathy and responsivity and kindness and love and fun and all the things you think of as a good mother, a good father. But it sure can’t and even shouldn’t be perfect. And that, a lot of people have in health and in sickness and in bereavement, have these ridiculous notions of what it is that they are supposed to provide for their kids. So when these guys heard this idea that you don’t have to be perfect, you can’t be perfect. You don’t even want to be perfect as fathers because they were feeling fake, like they had to be father and mother and good cop all the time. Whereas they may have been good cop, bad cop from time to time with their partners, and I think it was another liberating notion for them.
Kate: Yeah. It sounds liberating to me.
Don: It should be liberating to any parent!
Kate: Well, because it’s it’s, you know, because what you were saying about, grieving the future is I just didn’t have a category for cancer mom, in my head, that felt acceptable. It felt like, you know, that a vision of who I thought I was going to be as a mom just wouldn’t be able to be possible. And that, like, I would do my best, you know, you have like a had like a, like a salvaging model. And I, I’ve loved people who’ve given me vision and language for the idea that like it’s in the moving through that we can help give our best gifts and that maybe as a parent, like protecting them from everything is not the ultimate goal. But that there can be other beautiful things that happen just because we’re glitchy, you know, and just because, you know, things didn’t turn out the way we we hoped they would. I’m grateful for the the way that you, like are opening up new language and permission for people in the middle of loss. To say that we we put each other back together.
Don: Yeah.
Kate: Don and Justin, I love your giant research brains and your big soft hearts and the way that you’ve been walking people through really complicated grief. Thank you so much for having this conversation with me today.
Don: Kate, what you’re doing is really, really cool.
Kate: Aw, thanks.
Kate: This is it. We should only do reunion shows.
Justin: I love it. Everything is happening.
Kate: It’s so good to see you again. Well, I’m here again with the wonderful and kind Justin and Don. And it’s been four years since our episode aired. Which is so strange because how does time work? But I wanted a chance to check in with you both and hear about your work. What you’re working on now. The last time we talked on this podcast, we explored the origins of the Widowed Parent Project. And Don, I wondered if you’d start. I’d love to hear how the work has grown since we talked.
Don: I’m happy to say that, the work with the widowed parents, not just widowed fathers, has continued. And even since then, we’ve extended beyond widowed parents to parenting with cancer. So our main work these days, in addition to continuing the widowed parent group, is to focus on people who have cancer, and they also have dependent children at home and how we can serve them better. So the work is continued and grown, and it’s all been informed by what we’ve learned from initially these parents who have the who have the lived experience of having a co-parent die from cancer. But it’s informed how we take care of parents who have cancer.
Kate: What do you think that centralizing insight was that like felt that made the foundation of this new kind of man?
Don: Justin may have another idea. But for me, it was, quite frankly, listening to dozens of parents who witness their loved one living with and then dying from cancer and reflecting on the things that we got right as a medical field, the things that we got wrong in the room for improvement. And so that was just we heard so many stories, things like if I had known then what I know now, or if I could go back in time, I might do this different. And there was just no way to avoid the, it was an imperative for us to try to improve cancer care for parents based on what we learned from these widows. Yeah.
Kate: Justin, what do you think you know now that they need that you didn’t know before?
Justin: I think what parents with cancer need, first of all, is for their providers to be honest with them, to be straight with them about their situation, about their choices, and to be able to help parents not feel like they have to choose between either trying to live and survive and fight this cancer, or make plans in case it doesn’t go as well. I think both those two things, they seem like they would be in opposition, but they can actually live in concert. And I think that’s that’s a really hard balancing act for parents to, to, to find. And I think that’s where it’s incumbent upon, you know, folks like us to work with these families to help them, and kind of get that insight and then figure out how to do both of those things at the same time, because we’ve had way too many examples of folks not wanting to go there in case it doesn’t work, because they feel like by doing that, that they are, and, you know, maybe, you know, quote unquote giving up or not kind of giving it their all. And so, and to not have that drastic switch from all-in on team survivor and team going to beat this to, okay, now we need to make a drastic shift to preparing my spouse, preparing my family, preparing my kids for if I’m not here someday.
Kate: Is there not initially enough honesty? On the like, doctor patient side where they don’t feel like they have enough information to kind of begin to make those kind of decisions?
Justin: I don’t know if it’s a matter of honesty. I think by and large, oncologists are great with this kind of stuff. I don’t think it’s a matter of being dishonest. I think it’s a matter of explicitly naming it and being upfront about it and talking about it through the lens of being a mom or dad, because that’s often what’s missing, right? If you’re, you know, if you’re a 35 year old mom going through this versus a 68 year old man going through this, it’s not to say one is harder or easier or more or less challenging, but they’re very different. Right? If you have young children at home, we know this from our experience of this, from the research that shapes how you think about your cancer care, that shapes how you make decisions about your cancer care. And it is central. It’s the it is it is the leading indicator of what’s important to you and how you go through this. And so naming that, and that’s where part of our job is, is putting this on the table and saying, look, if you got a mom or dad with cancer talking about it and talking about them being a mom or dad with cancer is necessary, otherwise we’re we’re missing the mark. And so that’s kind of a broader sense of what we’re trying to get at, is by working with these parents through the lens of being parents, right? Not through the lens of someone who has cancer or someone who has anxiety or depression, but someone who’s a mom or dad. And there’s a lot of important discussions to have with the children, with the spouses, with the neighbors, with someone who you may want to help your husband figure out when your daughter reaches a certain age, how to have conversations, all these kind of things. We just heard this last night in our group at the fathers. We have a man who has a child bumping up against puberty, and he is feeling at a loss and doesn’t have anyone there. So there’s a lot of work to do. On the front end when when moms and dads have cancer that if they if they survive their cancer and go on then great, right? That’s wonderful. Those conversations didn’t do any harm. But in the case that that doesn’t work out. There’s a lot, there’s that window of time to help the surviving parent and the surviving children. But really kind of put them on a path toward adaptation and healing.
Kate: Yeah. I remember, I was on a trip recently to Houston, and there was this monument that was for, it was like a cancer survivorhoo monument. And you could go around these different stations of the cross sort of plaques that, and sort of like think about your journey as a, as a, as the survivor, as the cancer survivor. And one of the plaques absolutely floored me because it just said, decide that you will be the one that survives.
Kate: And I thought, oh, boy. Like this, there’s a painful one. It just hilarious that it’s in the context of choice. Right? And like, and decision making. But it sounds like what you meet so many people who are looking for, like, such a tender kind of discernment. They’re just trying to figure out what stage of any process they’re in to help figure out what’s in their control. Does that sound right?
Don: It does. If if someone asks the question or provides an opening for it. And one of the things that we’ve been struck. Why is that? It’s very often doesn’t even enter into the conversation. And in in other words, part of what we’re trying to do is to change that, change the culture in cancer care so that oncologists, when they’re talking with someone and they happen to know that they’ve got kids, to ask the questions, how is this going with your kids? Have you talked with your kids about it? Do you have any questions about how to explain things? And it makes perfect sense, but it’s it’s remarkable to us how much of a blind spot there is in medicine and even in psychosocial support. We don’t always focus on this. So if there is the opportunity to talk about it, then yes, you’re absolutely right. The discernment of and how does this play out for you becomes really relevant in both those ways that just and talked about decision0making medically in communication with your children.
Kate: Oh. And when you. I know this is hard to give as a elevator pitch for… What is your best advice for people who do want to figure out how to have that conversation? What are some of the maybe like scripts or just even like emotional starting places that that you use when you’re trying to help people start to have that conversation?
Justin: Yeah. For parents talking with their children, I mean, yeah. So it’s a great question. And I think the number one rule of thumb is to be honest, right. To be honest with your children now, to what degree you’re honest and how much detail you give in that honesty depends on the situation on your children developmental level. But honesty and that is the foundation. And that’s something we, you know, talk a lot with parents about that you have a relationship with your child, of course, before this. But this is different. And you’re building trust around this issue, right? And if your children feel like you’re giving them the information they need, you’re volunteering this information, you’re not hiding a lot of things, then that helps turn down the temperature and helps reduce some of the anxiety, right? It’s already going to be a challenging situation if children feel like they’re being updated and and told what’s going on and don’t have to kind of put their ear to the door to see what’s really going on behind these conversations and don’t have to kind of look up their own stuff on the internet to get the real information. If that can come from the parents, they can control the narrative, they can control how this is introduced. And that all begins with honest, open, age appropriate conversation. And, you know, I don’t know if to some folks that might sound…you know, kind of obvious, but it’s really hard, right? Our I think one of our first top instincts as parents is to protect our children. And it can feel like telling them something that’s going to make them upset or distressed. We might want to protect them by not telling that or really challenging it. That rarely works out well, right? And you now, we’ve had a lot of parents say that they over time, that they’ve been honest with their children up front. It was really hard, difficult conversations. But then down the road when they got, say, good scan news or good good results, they could go back to their children, tell them that news and their children believe them about the good stuff because they were honest at the beginning about the hard stuff. For being upfront and honest is not only. You know, good in the ways that it might seem, but it can really pay off in the future for families.
Kate: Oh, man, I would have loved something like that. I wasn’t, I really didn’t know exactly what to say at all to my son, especially because it went for it just went on for such a long time, and it felt like the answers would have to keep changing, you know, as he got older. But my best idea, which I’m still not mad about, is I got one of those, like, anatomical things, but for, the abdomen because, like, I didn’t even know where my where my colon was exactly when I got cancer. And it just has all the parts that kind of come out. And I was like, so it’s just like a little 3D puzzle. And I was like, hey, this is the part of me that there was a mistake in, and they had to take this part out. And so every time, because I was so worried, every time someone would come up and say, are you okay? And I was always, you know, there’s always a different stage of, okay-ness I was at. So I was so worried that he would hear people’s distress or hear people say cancer, and then that cancer, the word would just get so scary that… So I was just like, you know, Zach, we always have to replace all of our cells all the time. This is how we fix a cut on our skin. This is how we… so the body has to fix things. But sometimes when it fixes things it makes mistakes. So when people say cancer, they just mean that the body made a mistake. And here’s where my mistakes are.
Don: And I love that because you found language that, was your own language, it was authentic. It was an explanation because it came from you that your son was going to understand and make sense. But I just wanted to go back for a second to something you mentioned a little while ago, which was this, this notion of are there any scripts? In fact, we just, completed a study testing scripts to help parents talk with their kids about cancer. Depending on what kind of cancer it is, what stage it is, how old their kid is that they’re most concerned about, you know, what kind of style it is. So that, this is an online resource that we’re about to launch in the next couple of months where you put in all that information, and then if your kid says, are you going to die and no one knows what and how to answer that, there is some suggested scripted language that’s developmentally appropriate and tailored to your prognosis and cancer. And if you like that language, you could use that language. And if you’re inspired by that, or you hate it and you say, no, I don’t want to say it that way, I want to say a different way, then at least will kind of give you something to start with. And so, most people aren’t lucky enough to be able to make an appointment with Justin Yopp to have this conversation. So we’re hoping that this will be an online resource for parents anywhere that they could go on, and then get some tips about how to have these conversations.
Kate: You beautiful geniuses. We will put all of that information and all updates that you give us in the show notes, so that anybody listening to this can go there and find exactly what you’re doing. Right now, this very second. I… That is so, that’s so lovely, guys. Because we get, we get scared and when we get scared, we lose language so quickly. And then we hope just somebody else will fill in the blank. But then I think we’re always scared as parents that maybe, like the wrong person will fill in the blanks if we don’t do it right.
Don: Yeah, and one of our widowed dads dropped just this amazing wisdom bomb last night in our group. It was so wonderful because the guys were talking about not knowing what was coming next for them. Just as most people with cancer may not know what’s coming next for them. The way you described it, it keeps changing. And he said this beautiful thing, he said that, while you’re waiting for the new narrative to come together, you have to tolerate the fact that there’s no narrative sometimes. I just love that.
Kate: Oh, that’s good. That’s so good.
Justin: Yeah, because he had had a narrative how his life was playing out and that narrative got completely disrupted. And a new one is not taking hold and he’s having to tolerate. Where he’s at right now, where his daughter’s at right now.
Kate: There is something else you said in our last conversation that really stuck with me. That feeling that the dad has about not knowing. You gave such a lovely framework for how we have to grieve our imagined futures as we practice figuring out what hope feels like. I thought that was such a perfect encapsulation of one of the dreams of that Everything Happens project is to learn to speak more honestly about what we’ve lost, and then try to figure out what then is still possible. Like in the face of that knowing.
Don: Yeah, you can grieve over things that you had in lost, and you can grieve over things that you were hoping to have and will never have. And in fact, we had a version of that last night, essentially what it was a very rich group last night, as I think about it. But one of the guys essentially said, I’m broken in ways that I can’t get fixed. And that’s just simply true. That doesn’t mean that his life isn’t worth living. It doesn’t mean it’s not full of meaning, and that he can have fun and all sorts of things. But if if you get cancer, if you lose a partner to cancer, if you’re, you lose your parent to cancer. There is a part of you that is busted that, probably isn’t fixable entirely, right? There are other responses to it, but that’s just real.
Kate: I don’t know how to start the sentence, I have a favorite poet mortician, but I have a favorite poet mortician.
Don: Of course you do.
Kate: And he, he was describing that feeling of, like, when his dad passed. And the second he comes, he pulls in the, you know, there’s this one moment every day where he reaches for his phone to call him. And in the space of that, that there’s always this little echo and, you know, and then he goes on to describe how sometimes we become the people that we miss. They make you grow into new roles that you wouldn’t have had. But I can’t tell you how refreshing I find it when you’re like, no, no, no. There are some things that break. And when people hear that, I think that’s. It doesn’t hurt nearly as much as our culture thinks it will. I think that’s very satisfying to know the truth.
Justin: Yeah. Yeah.
Kate: You guys, thank you for your endlessly brilliant minds. But just as your friend and as your admirer, for your very soft hearts. It always fills me up to get to see you. And I’m so grateful.
Don: The feeling’s mutual. We are big fans. We love what you’re doing. And thanks for having us on. It’s been great.
Kate: Don and Justin, in their research and their work with patients and their absolutely adorable friendship, have a really profound reminder for all those of us who feel like we have to put ourselves back together. People are taken apart all the time. As their book reminds us, 10,000 people become widowed parents in the United States every year. And between cancer and bereavement and raising kids with disabilities and caring for aging parents and, you know, just growing old itself, we are losing things every day. But Don and Justin learned something quite profound. There was a magic in togetherness. There is a magic in moving from an I to a we. Yes, it’s risky telling your story. Being known. Complaining again about the thing you worried might sound cliched by now. Shouldn’t we be over it already? But we know we who are on the other side of loss, that we are moving all the time between the people we thought we’d be and the person we are today. Right now. Still not sure if you’re ever going to take your vitamins and get eight hours of sleep, or not cry when you think about all you’ve lost. But when we are together we remind each other. Yes. You’ll get back up again today. Yes, you’ll get those kids cereal or you’ll rub lotion on your mom’s hands. Yes, you’ll go to work or come up with something better to do with retirement hours. You will try again. You know you will, because someone else is pretty damn sure you can. If you’re more alone than you meant to be today, hang in there. We can’t wait to see you try. This podcast wouldn’t be possible without the generosity of the Lilly Endowment. Huge thank you to my team Jessica Richie, Keith Weston, Harriet Putman and JJ Dickinson. This is Everything Happens with me, Kate Bowler.
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