All About Change - Lise Deguirre - Trauma and Resilience

Episode Date: March 20, 2023

Dr. Lise Deguire is a psychologist, burn survivor, speaker, and author.  At the age of 4, Lise was severely burned in an accidental yet careless fire caused by her mother.  Lise spent years in the hospital recovering, undergoing multiple reconstructive surgeries, experiencing bullying, and navigating the world in a house run by parents who she describes as outrageously flawed, gifted, and iconoclastic.  In spite of her beginnings and losing 4 family members to suicide,  Lise continually found resilience, becoming a psychologist, mother of two daughters, and disfigurement advocate. In the multiple-award-winning memoir Flashback Girl: Lessons on Resilience from a Burn Survivor, Lise tells her story of survival and shares life lessons that will help us also find the silver linings and resilience we need to come back from the brink.  In conversation with Jay, they discuss her experiences and why she’s on a mission to help people find pathways toward resilience and create a paradigm shift around disfigurement. Please find a transcription of this episode:  https://allaboutchangepodcast.com/podcast-episode/lise-deguireSee omnystudio.com/listener for privacy information.

Everyone is capable of more resilience than they think they are. Hi, I'm Jay Rudiman and welcome to All About Change, a podcast showcasing individuals who leverage the hardships that have been thrown at them to better other people's lives. This is all wrong. I say put mental health first because if you don't... This generation of Americans has already had enough. I stand before you not as an expert, but as a concerned citizen. And today on our show, Lise DeGear. Resilience is actually the common outcome after trauma. Dr. Lise DeGre is a psychologist, author, and burn survivor who has overcome a lot in life. She left me in that fire. So I'm at this point sort of trapped and abandoned and on flame

and more or less my life is in grave danger. She spent years in the hospital undergoing multiple reconstructive surgeries. She experienced bullying, grew up in a house run by parents who were battling their own demons, and has lost multiple family members to suicide. But despite everything, I found Lise to be an incredibly happy and optimistic person. It is not an accident that I am a psychologist and that I am very focused on mental health concerns and trying to help people have hope and develop their own capacity for resilience. In her award-winning memoir, Flashback Girl, Lessons on Resilience from a Burned Survivor, Lise tells her incredible story of survival. I found her conversation profoundly inspiring.

I found her conversation profoundly inspiring. Her hard-learned life lessons can help us as well be stronger than we might give ourselves credit for. We can get through horrible, horrible things. We are much more resilient and stronger than we imagine ourselves to be or fear that we might be. Lise DeGear, it's such a pleasure to have you. Welcome to All About Change. Thank you so much for having me. It is a real honor to be with you today. I was so looking forward to this. Lise, you became a burn survivor in 1967 at the age of four due to a horrific accident. Could you tell us what happened? So I was on vacation with my little family of four up in Wolfboro, New Hampshire.

And it was our first night on vacation. My mother decided it was time to start to cook dinner. And she rummaged around our little rented cabin for something she thought was lighter fluid. And with me standing right next to her, I was just four, she poured this lighter fluid on a charcoal grill and attempted to light it, but it didn't light. So she poured the can again on the charcoal grill, and it turned out it was not lighter fluid. It was a highly flammable household solvent. And so in that moment, there was this giant eruption of flame, which enveloped both of us and blocked off any exit off the porch. And my mother in that

moment, realized that there was one way to save herself, which was to dash through the wall of flame and down into Lake Winnipesaukee. And that's what she did. But she left me in that fire. So I'm at this point sort of trapped and abandoned and on flame and more or less my life is in grave danger. But my father was able to find me and he sort of pulled me through the fence on the back way, grabbed me and pulled me through the fence and threw me in the lake and I was saved. But from that, you know, sort of 90 seconds of horror, I was left with third degree burns on 65% of my body. And my lip was burned away, and my chin and my neck and my arms were fused to my sides. And just being burned 65% third degree in 1967 at the age of four, it's a miracle that I am here. And that miracle is due to a lot of

doctors and nurses who work super hard, but here I am. And I understand your mother was in the same hospital as you, but not eager to see you. So you are right. I was fortunate enough to essentially be at the best Burns Hospital in the country at the time, was Mass General. And then Shriners Burns was built right next door, and I was there. That's where I did many years of hospitalization and surgery because burn survival is a long and messy and painful process. My mother was initially in the hospital next, right, you know, sort of on a different floor. And she was there for about three and a half months and I was there for five. She did not come to see me in the beginning very

much at all. And actually, in the beginning, not at all. She was not, again, particularly invested in what I was going through. She was very upset about what she was going through. And that's, that's my mother, right? That's just my mother. But I will say, I'm incredibly grateful to Mass General and to Shriners. Those doctors and nurses knocked themselves out to give me a decent life, which I have managed to have because of them. That's just incredible. I understand that you had to undergo many surgeries before you were released from the hospital. I mean, in some total now, and I'm talking because I still have procedures. That's maybe something that most people who've not been burned, and I hope nobody out there has been burned because it's an awful thing, but it's sort of a lifelong process, really, recovery, recovering from a severe burn, because there's always need for more and more procedures. So I've, at this point, I've had, I think, about 75 procedures. Wow. There was something that you shared in your book that really struck me because it is sort of inconceivable. You had to go through very painful procedures as a little girl, but you were not even

given any painkillers? At the time, for some reason, and I don't, I cannot, no one can explain this to me. They just didn't believe in giving painkillers to burn kids. Burn adults got them, but kids didn't. Anybody you talk to who was burned around the time that I was, they'd be like, oh yeah, it was torture. And it really was torture. I will say nowadays, they don't do that anymore. Nowadays, they'll even put you in a twilight sleep for bandage changes because it's just the most painful thing in the world, really, burns. They've decided that it is the most painful thing,

you know, more painful than kidney stones and childbirth. And I've done both of those things, so I can attest it's an incredibly painful process to recover from burns. So knowing this, it's incredible to think that your mother, after leaving you in the fire, still didn't frequently come and visit you. Yeah. So I think that it is not necessarily true that just because you're a mother or you're a father that you are really emotionally equipped to be a good parent. Absolutely. I think it's sort of a myth that we tell ourselves that, you know,

there's this maternal instinct. And for many people there are, there is, but for some people there isn't. And my mother, unfortunately, was one of those people. She meant well. She never meant to hurt anybody. She did actually wind up hurting a lot of people, but her intention was honorable. She just, you know, when push meant to hurt anybody. She did actually wind up hurting a lot of people. But her intention was honorable. She just, you know, when push came to shove, she worried about herself. And did I talk with her about that?

Yeah, I tried to. I'm a psychologist. I've been through a lot of therapy. I tried to work through that and many other things. But, you know, not everybody's capable emotionally of what we think they should be. And while your father was the one that saved you, in your book, you show that both your parents had their issues. Did you always know that they weren't the best at being parents? It took me a long time to understand that. Because, I mean, I also really

want to be fair to my parents. They were gifted. They were interesting. They were highly educated and brilliant musicians and a lot of fun at a party. You know, like they were really interesting people. But were they emotionally equipped to be parents? They were not. Right. They were not. And I think I gradually came to understand that from

circumstances I went through and also my brother. But boy, when I really understood it, Jay, was when I had children of my own. And I could contrast my wish and my sort of imperative to keep them safe and take care of them versus what I realized the experiences were for me and my brother. Parenthood pointed all that out to me and really stark relief. Did you have a better relationship with your father than with your mother? Yes. And he was, I think, more paternally oriented, a little more protective. He did things like he brought me a record player so I had music to listen to because it was mostly flat on my back for a long time. He was thinking a little bit

more about my comfort and what I needed than my mother was. Right. And while he was better there, he also had his own blind spots. In your book, you wrote about being the victim of child abuse. Do you feel comfortable telling us about that and your father's reaction to learning of it? There was a man who was a friend of my family's who tried to teach me how to French kiss when I was five and kind of sort of did that again when I was 14, sort of forcibly kissed me and held me against my will. kissed me and held me against my will. And my father completely minimized that and sort of said that I should just get over it because this man was my father's friend. If my dad were alive now, he would not do that now. But back in those days, he did. I'm not, you know, I think a lot of fathers would have been more protective of their kids than my dad was. But even my dad would have come along by now. Was this person in your family's life for a long time afterward?

Yeah, I saw him now and then. The last time I saw him, I was 14 when he sort of grabbed me right in front of my dad, actually. And after that happened, I said to my dad, I am never going to see that man again. Never going to be there when he's there. And my dad was mad at me because I wasn't being friendly towards him. I'm like, I'm done. So I was able to stand up for myself, and I'm glad I was able to do that. And my dad, to his credit, I will say before he died, that's actually maybe the one thing he ever apologized to me for was that he realized he was in the wrong.

apologized to me for was that he realized he was in the wrong. Your dad had a complex life, being married to your mother, divorcing, and eventually coming out as gay. What was it like going through all that? I'm struck by these questions that you're asking me, how much the times have changed for the better. But my dad was born in 1929 to an extremely devout Catholic family. And being gay at that point was a sin. And certainly nothing that one could be with any sort of pride or freedom.

And he was in the closet. And then he was sort of a little bit not in the closet. But he waited until his mother died to really come out and embrace his sexuality. So, you know, that happened when I was in my 30s, I guess. And I supported him. I was very sad for him, though, because he came out and he very promptly got AIDS and died not that much longer after that. promptly got AIDS and died not that much longer after that. So it's a tragic tale of somebody who held himself in for all those years and then finally had a few years of what he wanted to be.

And then he died relatively young. And you spoke about your sibling. I understand you also had an older brother that you had a very close relationship with. Yeah, I always say that my best parent was my brother. My brother Mark was an awesome older brother, just five years older, but super smart and kind and very caring. And he took really great care of me for a while.

As I learned from your book, he did not have a long life. And even looking at your baby pictures, you can tell you two had very different temperaments, where you were more happy and he was sort of downcast. Could you tell us a little bit more about your brother? Yes, sure. I love talking about my brother. His name was Mark Emile de Geer. He was, in fact, kind of a sad boy and grew up into a sad young man. Part of that is temperament. Some people are like that. And I think also he recognized really pretty early on

that our parents were not what they ought to be. And I think that made him sad. He fell into depression. He experimented with a fair amount of drugs. He was neglected the same way that I was. And at the age of 19, he took his life, which was a great tragedy for me and for other people too, because he was a well-loved young man. I'm so sorry for your loss. I understand that this was just one of several people close to you who died by suicide. Yes, there were actually four suicides in my family. That includes extended family, but yeah. So it is not an accident that I am a

psychologist and that I am very focused on mental health concerns and trying to help people have hope and develop their own capacity for resilience. Because I've lived through the tragedy of when people don't have that or when they give up on themselves. Absolutely. That's just incredible. At such a young age, how do you think you got through it? So that is a lot of what the book I wrote is about. My book, Flashback Girl, it's about me, what the book I wrote is about. My book, Flashback Girl, it's about me. But it's really about how we all can get through horrible, horrible things. The fact that we can get through horrible, horrible things. We are much more resilient and stronger than we imagine ourselves to be or fear that we might be. And there's a whole mindset to resilience, some of which I think came naturally to me.

But that doesn't mean that we can't all learn it, really. And the mindset includes things like gratitude and optimism and doing what you can to help yourself and having people who love you around you and being able to form and keep relationships and just keeping going. Absolutely. So I think naturally I'm good at that, but I think all of us can be helped to be better at that. I can definitely see how these things can be powerful mental health tools. For a person who doesn't have a sunny disposition like you, can these tools also work for us? Yes, you are absolutely right. Some people just seem to be born with a smile on their face and some people wake up, you know, kind of, and that might be our personality. But yes, I think we can all get better at noticing what we have

as opposed to what we don't have. I heard it said recently that gratitude is the capacity to notice the good around us as opposed to the things that we think are missing. And everybody's missing something. And everybody has more than what they think they have, you know? I mean, you can say what I went through in the hospital and how torturous it was, and it was. It was all those things. But look at the other side of it. I was in the best hospital. I had doctors and nurses who were knocking themselves out for me. I was alive. That's really powerful. I'm still impressed by how you were able to take situations that could be so destructive

and discouraging and still find a bright side. For example, your body was frequently examined, not just by your doctor, but by other medical personnel. At such a young age, how were you able to be naked and make yourself feel comfortable and not feel humiliated? Again, that's mindset. I'm not saying that this is so easy, but I am saying this is what I do. I could concentrate on it the way that you said it, Jay, which is that I'm naked and teaching hospital and doctors are trying to learn. And if they can learn from me, then they can help other burn kids when they come along.

And people weren't putting me on display for the fun of it. It was so that they could get better at helping me and the other kids. But both of those things are true. Both ways I just said to you are true. I guess I prefer to focus on the second one, the one that talks about sort of the meaning behind it, as opposed to just the uncomfort of it in the moment. Lise, for young people, especially, but also since COVID-19, we've been in a sort of mental health crisis.

So many of us suffer from or know people of some sort of sadness or depression. Are there warning signs that we need to look for? Looking back, were there signs that you didn't understand then, but given your work and experience, you see clearer now? The thing that I always listen to very carefully for is if a person starts to say that people would be better off without them. That to me is the most dangerous thing I can hear a person say. Absolutely. Lots of people feel sad and lots of people feel discouraged and depressed. Right. And I don't even think it's, unfortunately, I don't think it's that uncommon for people now and then to think that they're tired of living or life is too hard.

But when you get to the point of thinking people would be better if I'm not here, that is the point that people are in, I think, grave danger. Yes. And what do we do at that point? Like I had a guy who reached out to me on social media and said something like, I thought the world would be better off without me. And I don't feel that way now, but sometimes I do. I didn't even know this person, but I wrote back and said, listen, if you're thinking of hurting yourself, please call 988, which is the National Suicide Hotline. But while you're a professional, a lot of us are just civilians. What's the best thing for us to do? Well, first of all, 988 is a great resource, and we're very lucky to have it. And it's an

absolutely great thing to say to that young man. In addition, what I say to somebody, having that thought that people are better off without you is a symptom. And it's a symptom of depression, right? It's not real. It's a symptom. Like having a fever is a symptom of the flu. It's just a symptom. It feels real, because it's in our minds, but it isn't. And that they are obviously clearly in need of great help and you would like them to have that. But I point out that the thought itself is a distortion. It's not real. Absolutely. And on top of that, there's just so much stigma against being open and addressing mental health. And it's holding a lot of people back from getting the help that they really need. Absolutely. Yes. So you're mentioning stigma. If I can jump in and say something that I really wanted to share with you. Of course, please.

Because again, your foundation does so much work on disability and how disability is portrayed. And I mean, I am blown away really by everything that your foundation has done in that area. Thank you. I am really hoping to be able to talk a little bit about disfigurement and how that is portrayed in the media and the need for change in that area, because disfigurement is, it it's like it's part of disability. It is, according to the ADA, it's part of disability, but we're not getting traction on that area the way I'd like to see. I totally agree. I mean, for all disabilities, we worked on this with several major studios to change their policy. For a long time, there was a mindset

in the entertainment community that real acting was playing a character that was very different from you. And in fact, for the last 30 years, half the men that have won the best Oscar have won for playing a disability, which is crazy, but also demonstrates the need for representation. Now, people with disabilities are able to see themselves

in film and TV played by someone who actually has that disability. What sort of traction would you like to see when it comes to disfigurement? Well, I would be thrilled if facial difference were portrayed by actors with facial difference. To me, that's like the best possible outcome. The change I would like to see first is just that scripts are not written, that disfigured people are evil villains. Darth Vader and Scar and the Lion King and basically every James Bond villain you can think of. And I could go on and on and on.

You know, all these villains are evil or disfigured. And like the disfigurement is this like cheap trope to say like, ooh, bad person. And like, boy, we don't allow that for any other disadvantaged group in this country. But somehow for disfigured people, we're like, fair game. It's so discouraging. Right. And changing this reality is really about calling them out on the carpet and also getting the showrunners, the one creating the shows, and the writers in the room to be more inclusive and get more authentic, human, and appropriate representation. That's the way to start really changing the historical mindset that calls for cheap tropes. But it does take a

certain amount of activism. It's not going to happen on its own. but it does take a certain amount of activism. It's not going to happen on its own. Yeah. No. And again, I think your foundation has done an incredible job in this space, and all of us are so grateful for the work that you've done. Thank you. Thinking of the impact of these tropes and how they model behavior, I remember in your book, you write about being a young burn survivor, going back to school, and you had all types of reactions from fellow students and teachers. How did that impact you? Yeah, it was brutal. It was a brutal time in my life. I will say that if I could get to know the kids, usually I could make friends, but it was the kids that I didn't know who could just

be brutal. They would run past me screaming like, ugh, you're ugly. And I mean, this just every day, it was like that every day. So it was a very unhappy and challenging time. And this is back in the day where there was no intervention around bullying. I don't recall a single school assembly that ever talked about bullying or that even that you shouldn't bully. It was just something, it was just how it was. The only advice being given was probably you remember the phrase sticks and stones will break my bones, but words will never hurt me. Yes. And being told that and sort of being like, all right, I guess,

but they hurt me. It was a really, really challenging and difficult time for me. Was there a teacher that you could turn to and say, hey, listen, these kids are relentless. I'm being bullied every single day. I would have never even, that would have never crossed my mind at the time, Jay. You know, I was a little kid and, and I just don't remember schools being like that back then. I feel like maybe that's one good change that has happened in our society is schools seem to be a little bit more caring about what kids are going through, but it was not the case when I was a kid, not at all. It was sort of dog eat dog.

That's so unfortunate. I mean, bullying is so dangerous, especially in the age of social media. It can lead to serious problems, even suicide. Were there also some good examples of kindness from other students? Yes. Again, if I could get to know people, you know, I'm a nice person. Like, I'm nice. I'm interested nice person. Like, I'm nice. I'm interested in folks. And so if I could just have the chance to talk to people, usually I would become just a person like anybody else.

And the bullying would stop. It was the immediate reaction to how I looked at the time. And the reaction that is the case for a lot of people who are facially different, we get judged just on that. And often the judgment is quite harsh. the case for a lot of people who are facially different. We get judged just on that. And, and often the judgment is quite harsh. Were you ever able to completely reconcile with your parents, confront your mother and, you know, deal with these issues before they passed on? Uh, I mean, you know, I will say I've, I've been in a lot of therapy so I I have gotten healthy myself and I'm I'm a psychologist myself I'm also a huge proponent of of therapy for just about everybody I think it helps a lot get through this thing called life but my mom was not someone who was open to talking about ways that she had ever made a mistake. So it was

not she was not somebody that you could have a heart-to-heart with and have that go well and honestly my dad wasn't too great at it either. So I have come to peace with things for myself and I have come to a good understanding of what I've been through and how it shaped me and how I can use that for positive. But did I soothe things out with them? The best I could, but they weren't great at that stuff. Too bad for them. But I'm also impressed by how with all the trauma you had in your life, you are still so incredibly vulnerable in sharing your story in the book and interviews. so incredibly vulnerable in sharing your story in the book and interviews. Why did you write in an honest and open way? Because I actually think that life is challenging for almost all of us. And if it isn't for you right now, at some point it will be. I think life is nowhere near as

easy as we think it's going to be. And that most of us hide that and we do ourselves no favors. that most of us hide that and we do ourselves no favors because then when you're going through something, you feel alone. And also if you have gone through something, you're hiding your wisdom and your strength and your ability to help other people. So I feel like an honest story about being essentially at the one time, you know, the most unfortunate kid you would have ever seen in your life and how I made it through all these things to build a really great life for myself. That's the kind of inspiration and hope that I think sometimes we really need. That is so true. And you mentioned this a lot, the need to really hear other people and practice attuned listening, because listening is healing and it can impact our lives on a much larger scale. Can you talk about what you mean by that? How can it really help us at a time when we are so divided as a country? Well, yeah. First of

all, I think attuned listening is like the greatest gift that we can give each other, First of all, I think attuned listening is like the greatest gift that we can give each other. Just to be present for somebody and give them, with an electrified fence going through it, where if you just even touch it, people are like, oh, you know, there's such shock, if you possibly have a difference of opinion. really think, you know, most of the people who I work with in my practice, so much of healing is just listening to people respectfully and with care and concern. Right. Half the time they don't even need solutions or problem solving. They even know what to do, but there's just so upset and feel so alone or misunderstood or traumatized that they can't get to solving the problem. or misunderstood, or traumatized, that they can't get to solving the problem. So I think listening is so much more powerful than we give it credit for. It seems like we're not listening to each other, and we're talking in echo chambers.

But I do remember a life in America where people did listen more to each other. And maybe social media has not really helped us in that many ways. And I remember those times too, Jay. And I also think that we've kind of gotten pushed into our little silos where, you know, if you click on this kind of story, that's the kind of story you'll get in your Google newsfeed from then on. And are you listening to news that is saying the opposite point of view? Probably you're not. And that's happening to everybody.

So we're getting more and more down our own little tunnels of perception. And it's not healthy. That's so right. I want to end with something to help combat that unhealthy thinking. In your book, you talk about the importance of building a resilient mindset. Can you tell us a little bit about what you mean by that? How do we go about doing it? So the good news is that everyone is capable of more resilience than they think they are.

And that resilience is actually the common outcome after trauma. Maybe not right away, but it is the common outcome that people bounce back. Not everybody, most people. And there's genetic components of resilience, which we have no control over. And there's economic components of resilience in terms of being able to access great therapists or great doctors or whatever. Can't control that much either. But the mindset of resilience, we can control, build on, and improve. And I have a mnemonic for that, and it's goals plus M&M. So the G in goals stands for gratitude. The O is for optimism, which is not necessarily like everything's great, but it is the ability to say, you know, it could turn out okay. I have a problem, it could go fine, actually. It's the ability to imagine the positive. The A in goals stands for

active coping. So that's the ability to have your problem and say, well, what can I do about this problem? Well, I'll call this person, I'll get their advice, or, you know, I'll start saving for the, you know, it's the ability to break down a problem and say, what can I do about it and do it? The L in GOALS stands for love. And people who are resilient tend to have people who love them. I will say that some people are blessed to have fathers like you, or I'll even say mothers like me. I'm a good mom. And some people aren't. You don't necessarily have to be loved by everybody. And you don't even necessarily have to have a great mom and a great dad in order to be resilient,

as long as you have somebody who loves you. I have my brother. Some people, it's their grandmother. Just somebody who loves them is looking out for them. The S in GOALS stands for social skills. You know, it's people who can make a friend and keep a friend and make a contact and keep a contact. Because we help each other, hopefully, in life. We help each other. And then the M&M in GOALS plus M&M stands for meaning making. And that's maybe the most in-depth thing. After you've been through something really challenging, it's the ability to look back on it and say, well, what can I learn from that?

Or what good can I make out of that? Right. I think actually, as I understand your life a little bit, Jay, your foundation is an excellent example of meaning making. You know, you've taken things you've been through and you've changed the world because of them. That's meaning making. I make meaning from what I went through with my brother by trying to keep people alive. So anyway, that's the resilient mindset.

And every one of those things I mentioned can be worked on and improved, every single one. You're not stuck. That's so powerful. And I think we can all take so much from this conversation. I'd urge everyone listening to get a copy of Flashback Girl, read this memoir, and learn from it. You've gone through so much, and you've really managed to create something that helps people find the silver linings that make life worth living. Thank you so much for being on All About Change and I hope that you keep going from strength to strength. Thank you so much. It's been such an honor to meet with you today, Jay. Thank you for having me. The honor is all mine. Thank you so

much, Lise. All About Change is a production of the Ruderman Family Foundation. Our show is produced by Yochai Metal and Mi John Zulu. As always, be sure to come back in two weeks for another inspiring story. In our next episode, we're going into a deep dive of the troubled teen industry with Meg Applegate. I won't lie, it's going to be a rough ride, but certainly if you're a parent, especially a parent of teens, a ride you're going to want to strap in for. In the meantime, you can go check out all of our previous content live on our feed and linked on our website, allaboutchangepodcast.com. Lastly, if you enjoyed our show,

please help us spread the word. Tell a friend or family member or consider writing a review on your favorite podcasting app. I'm Jay Rudiman, and I'll catch you next time on All About Change. Not goodbye.