Welcome to The Widowed Mom Podcast, episode 231, Widows Unfiltered: An Interview with Dr. Lucy Kalanithi.
Welcome to The Widowed Mom Podcast, the only podcast that offers a proven process to help you work through your grief, to grow, evolve, and create a future you can truly look forward to. Here’s your host, Master Certified life coach, grief expert, widow, and mom, Krista St-Germain.
Hey there, welcome to another episode of the podcast. I’ve got a good one for you today. I just finished my conversation with today’s guest and it was phenomenal. Before I tell you a little bit about her I do want to remind you that starting next Monday you are invited to participate in this year’s Happier Holidays for Widows Moms online event, it is three days. I want to help you have holidays that suck a little less.
We might not make them fully happy, but at least we can make them happier, which is why it’s called the Happier Holidays for Widowed Moms event. You can go to coachingwithkrista.com/freeholidayevent to sign up. If you want to do the fully free version, you can. If you are the person who wants the VIP version, you can take advantage of that too, which includes a whole lot of resources that I put together for you. And also a bonus 90 minute session where I will be going even deeper into the tools that we’re teaching and then coaching as well.
There’s tapping recordings that I have done to make the holidays easier and just a nice little bundle of things that I think will make your holidays suck a whole lot less. And you can get that again, coachingwithkrista.com/freeholidayevent. We’ll also have a popup Facebook group that we’ll be using just for this event, so we can connect and share ways to make our holidays a little easier. Alright, so you are invited to that. We start Monday, November 6th. So go get registered and I’ll see you there.
Okay, so let me tell you about Dr. Lucy Kalanithi. I have a very long bio in front of me. I say that because I’m not going to read the whole thing. I’m just going to hit the highlights. So, Dr. Lucy is a clinical associate professor of medicine at Stanford University. She’s an advocate for culture change around healthcare value, especially as it relates to palliative care. And she’s the widow of Dr. Paul Kalanithi, who authored the number one New York Times Bestseller, When Breath Becomes Air. His book was nominated for a Pulitzer Prize. It was translated into more than 40 languages.
And she wrote the epilogue of this book and when I say epilogue, I don’t mean a couple of paragraphs. I mean something you should go and read as a widow immediately, so relatable, so human, had me in a puddle. I was actually walking as I was listening to the epilogue, but so moving. I highly recommend that you go and listen to it. Dr. Lucy also graduated from the Yale School of Medicine. She did her postdoctoral fellowship at Stanford’s Clinical Excellence Research Center.
She has a TEDMED Talk called What Makes Life Worth Living in the Face of Death. It’s been viewed more than two million times. And more than anything, she’s just a widowed mom who gets it, who I think you’re really going to relate to and enjoy hearing from. And sometimes, honestly, you all, when I do interviews like this, I have to pinch myself. These are the kinds of amazing conversations I get to have with people that change the way we think about grief. And I’m just so grateful for that.
So I can’t wait for you to listen and learn from Dr. Lucy, and with that, I will stop talking so you can hear her. Alright, enjoy.
Krista: Alright, Dr. Lucy, welcome to The Widowed Mom Podcast. I’m glad you’re here.
Lucy: Thanks for having me.
Krista: Yeah. Tell my listeners a little bit about who you are, what you do.
Lucy: Yeah, sure. So I’m a widowed mom, obviously. I’m a doctor. I have a nine year old fourth grade daughter who is a total goof. She has a pet snail and still has wiggly teeth, and we’re doing well these days for the most part. My husband Paul died of lung cancer in 2015. He was also a physician, we met in medical school. And then he was a writer as well and he published a memoir about his illness and about being a doctor and a patient both. It was called When Breath Becomes Air.
And then after he died the following year, I did a book tour on his behalf. So that was one of the things that happened to me after he died. It actually turned out to be really connecting and great, although initially I only did it because the publisher told me. So maybe we can talk about that too, but yeah, that’s me.
Krista: I have so many questions for you. So my husband died in 2016 and so as I was familiarizing myself with, first of all, Paul’s book because I had heard about it so many times, but I’d never read it. Just struck by the epilogue, I literally cannot imagine having to write, I mean, you didn’t have to, but writing something so intense. I’m so curious, what was that like? When did you write it? How did you do that? It had me literally weeping in a puddle. I’m just tearing up just thinking about it. How did you do that?
Lucy: Yeah. So I wrote the epilogue to Paul’s book. That kind of describes the day that he died and reflects on him and then reflects on a little bit of what was happening right after, including his grave. And how would I do it? So you’re right, I kind of did have to, but that part actually felt really good. So I’m not a writer at all. I’m more of a talker. I don’t really like writing but because he had written this memoir and it was being published after he died, the publisher, which was Random House, said, “Would you be willing to write an epilogue?”
And at first, that sounded really crazy and then I realized that if Paul could have written about the day he died, that was part of the story that he was telling, was how to face when you know you’re dying. And so I thought the reason that I wanted to do it and the reason that I felt compelled to do it is because it was in service of Paul, or in continued partnership with Paul. And we had known obviously that Paul was going to die, we knew for about two years, but even when it happened, I was so surprised by how totally shocked I was in a way.
It was like he was here and then he disappeared. I just was like, “He disappeared. He disappeared. He’s not here, he disappeared.” And somehow that just was so disorienting. Even being a doctor, even knowing he was sick, that was so surprising, existentially. And so then I feel like I’m sure people can relate to this, but after you’ve been so partnered for so long and then the person disappears. For me having this project that was his and that was, I’d been obviously supporting him as a writer and helping with the medication, everything.
So just having that continued project weirdly was great and compelling. And sort of the only time that I felt like myself was when I was working on that. And ultimately I actually asked for a ghost writer.
And so I got linked up with this woman named Emily Rapp Black who wrote a memoir called Still Point of the Turning World about her son having Tay-Sachs and dying. And she is just hilarious and profane and swears all the time and became a very close friend quickly and is an amazing writer. And sort of coached me to pull out the pieces that she could then help me weave into a coherent story. But when I look back, I actually wrote most of it myself and then she kind of shaped it, which I think is one of the hard parts about being a writer.
But it turned out to just be all, yeah, like I say, the only time I felt like myself. And then she gave me all this writing advice too. She said, “Okay, if you’re going to describe the day that Paul died, what did the light look like coming into the room when it was such and such time? And what kind of chairs were you sitting in, in the room?”
And she said, “The more visceral sensory detail that you can give, the more specific, the more universal it will end up feeling to the reader. Because then they’ll feel like they’re there and then they can try on their own feelings or bring in their own memories.” And so that was interesting advice too, but it weirdly turned out to be okay and helpful.
Krista: I definitely felt like I was there. And I also think, by the way, if somebody is listening to this, when I heard epilogue, I was thinking a couple of pages. Not, I don’t know how many it was, but no offense to Paul at all in his book, amazing. But the epilogue did it for me. And maybe that’s because I’m a widow, but oh, my gosh.
Lucy: Yeah. Thank you.
Krista: It was just absolutely stunning. How soon after he died did you write that?
Lucy: He died in March and we were writing it in the summer. So a few months later. And then the book came out the subsequent January.
Krista: Amazing. What was your grief fog like? Did that affect you much?
Lucy: Yeah. [inaudible] you’re not like, “Did you have grief fog?” You’re just like, “What was your grief fog like?” Good question. Yeah, I mean, it’s so funny because I felt so in it with my grief/thinking about Paul/my daughter. And then I’ll tell my mom something about that period of time in retrospect. And she’ll be like, “I was there for that.” And I’ll be like, “You were?” It’s just like, what? And then I feel for a while you forget how to chew and people are just trying to make you eat.
And I remember initially just feeling so lonely all the time, friends would come over and I would just be like, they could be here and not be here. I mean I’m sure it was better that they were there but I just felt so lonely. And my mom, she was like, “I promise you won’t feel this lonely forever. I promise things will fill in.” And I kind of don’t believe it at first and then it did happen. And now I feel so connected and part of a nest of people. It’s my daughter and me and two cats in our house but I feel, [inaudible].
And then, yeah, in terms of fog. I also had a lot of physical symptoms. I don’t know if you had this but my hands were burning and tingling all the time, both hands. And I would wake up at night and feel it. And then I had all this catastrophic thinking about it. I was like, “This is a nerve disease and then I’m not going to be able to take care of Katie and this is going to ruin my career and we’re not going to be okay.” And then a year later, it just kind of lifted, it might have been less than a year, but it took a while.
And then as a doctor, looking back, I was like, “That was somatic symptom disorder.” It’s a physical manifestation of stress. The same way people get headaches, insomnia, belly pain. But I don’t think I had quite tried on for size, how you could get neuropathy type symptoms like this tingling. And meanwhile, I thought I was coping okay. I was like, “I’m doing okay. I’m doing okay. I’m so proud of myself. Why are my hands falling off?” So I just feel, I do think the only way through is through.
It’s almost like there’s a certain amount of feelings you just have to feel and your body can do it for you. You can do it by listening to music. You can write. You can talk. You can go to therapy. But I just feel the only way through is through and it’s really hard and you’re partly just waiting around.
Krista: Yeah. I love too that you’re normalizing the whole fear of you dying. As a parent I see that really, really often and people also then shortly question their sanity. But it’s so common, of course, why wouldn’t we have that fear when you just lost the other parent and you love this child or your children so much?
I have friends who are doctors and they tell me that they didn’t really learn much about grief or that what they learned in medical school about grief really wasn’t all that useful to them. Can you talk about that for you? What did you think grief was going to look like? What had you learned? How did that actually compare?
Lucy: That’s a great question. I mean, we weren’t really taught about grief in medical school per se. I feel the weird thing about grief is just grief and illness is your identity is changing through the whole thing. So you’re really sad and you’re missing something, but also you are a different person living in a different world. And I think that’s also true to people who get a diagnosis or who have something about their body that’s changing or even with aging or whatever. And so I think I didn’t realize how that upheaval and identity is a big part of what is hard to then reconstruct and come to terms with.
And we just didn’t learn a lot about the experiential aspects of illness or certainly grieving or caregiving. All of that stuff is a bit hidden when you’re in medical school and you’re learning science. And so that may be changing, but slowly if you were crossing your fingers. So yeah, I mean I feel I learned a lot. And I learned to ask deeper questions or to sit for a while to wait for an answer or sit for a while when there is no answer. And then I don’t know if you’ve seen, I don’t know enough about this to truly comment.
But psychiatrists are interested in grief and there’s research on specific medications indicated for grief. And that’s so interesting because it’s kind of like wow, this is a really natural human thing that everyone does and it’s not fixable. It’s something, I don’t really think you can fix it with a medication.
Krista: [Crosstalk] that something’s broken.
Lucy: Totally, yeah. And you’re like, no, this is what human beings do and has to do if you’re lucky anyway because it means you loved really deeply. But at the same time there is depression and there is anxiety and there is panic attacks and there is stuff that can get triggered. And so sometimes it is all sort of swirled together, but I don’t think it should be medicalized, but I do think it should be caught and seen.
Krista: Yeah, I have really mixed thoughts about it too, because I can see, just thinking about the prolonged grief disorder diagnosis that’s out now. I can see the benefit of helping someone whose quality of life is just really in the toilet, realize that it doesn’t have to stay there. But also can we use it for good and not have people turning it against themselves as though they’re doing something wrong or making it such that we start to believe that grief is a problem that we need to solve.
Can we avoid perpetuating the myth that it ends? It’s all complicated but I do like that conversation is happening.
Lucy: Yes, agree. And I think maybe it just has to do with the instinct of the actual grieving person. Yeah, how they feel like they’re doing. If they’re in distress to a degree that they feel like they need more help. Kind of the same way as depression. There’s medication for depression. There’s therapy and lots of other things. And if you put them together, they all work together. But grief also just takes work even if the work is just persisting.
Krista: Yeah, which can be in and of itself, exhausting. Yeah, I don’t think I fully realized the physical impact of grief. I never had tingling hands. That wasn’t something I had, but I didn’t expect it to be so physically draining.
Lucy: Physical. Yeah, isn’t that interesting? Yeah.
Krista: Yeah. What about, just thinking about how it’s changed over time for you. Did you come into the experience anticipating that grief would end in a way, that it was time bound in any way, what was that like?
Lucy: No, I didn’t have that. I mean, because I also think love doesn’t end, so, no.
Krista: Yeah. How did it change over time?
Lucy: For me, I feel the pain and sadness and big waves are less certainly now a lot. And I feel the love is exactly the same. That’s how I feel. I feel like I’m back in the world in a really full way and I really loved Paul. I fell in love once since Paul died and out of love and yet just Paul’s my family forever, he’s Katie’s dad forever and those are the grandparents forever. And then sometimes that are still obviously hard, just parenting logistics, period, but also every wedding anniversary. I think I’m going to be fine and then I rage bake a carrot cake immediately upon waking up in the morning.
Krista: Rage bake.
Lucy: Rage baking. So yeah, I mean, but I mean certainly it’s less.
Krista: What have the conversations been like with your daughter as she ages? How have you worked to maintain Paul’s memory and keep it active in her life?
Lucy: Yeah. So I mean in a number of different ways. It’s very important to me that she has the chance to know Paul and understand where she came from while also not pressuring her to incorporate him in a certain way. She was eight months old when he died. She’s nine now. She knows all about him. We have pictures of him in our house. And then one of his brothers has her first sleepover once a week because of where her school is and they both live here. And then the grandparents just retired here.
So he’s in the mix including because his extended family is with us on a day-to-day basis still. And then she knows when I will say random things about him. I’ll be like, “Wow, you like taking such a long, hot shower, that’s just like daddy. I don’t like an hour power shower but you do and daddy did.” So she knows stuff like that.
And then I made her, one of the things I did purposefully was for her third birthday I made her this book using one of those photo book services. That was literally a story about Paul, was once one time there was a little boy. He lived in Arizona. He had two brothers. He liked animals and he tried hard. And then he grows up and he wants to be a doctor. And then he decided he wanted to have a baby and guess who the baby was? And then she’s in the book and then it says, he got sick and his body stopped working.
And here’s some ways we remember him and here’s all the people in our family and life. And then it’s just sort of just for her to see the pictures and almost get to know him as a character as she was getting to know [inaudible], character. And then the interesting thing is he wrote this memoir, so then she’ll read that at a certain point. I think an older high school kid could read it. But one time she was like, “I am mad that Eve, her cousin, remembers daddy and I don’t.” And so I wonder whether she’ll be like, “I’m mad that other people are reading this book.” You just never know.
And at the same, the fact that our family shape, which is me and her nuclear family, is different from the kids at school. And the fact that she wants a baby sister but doesn’t have a baby sister. She’s like, “Can I have a baby sister”, is in a way just as salient to her.
Krista: That that’s a loss for her.
Lucy: I want a baby sister too. So it’s just coming to terms with the way a family is in a bunch of ways. It’s part of her experience. And then we have really great neighbors and stuff, and I feel, I mean, it’s hard to be a solo parent obviously. And I feel like the nuclear family, as we think of it, two parents is too small for anyone anyway. I think you can’t raise kids in one house and it takes a village and a lot of people and influences and relationships and support.
Krista: Yeah, I know that’s one of the things you’re passionate about. What would you like to see, if you could just wave a magic wand about how we define families. How do we define families?
Lucy: I haven’t exactly thought about that. I mean I feel we have this idea of there’s two parents and two kids. But I don’t know if it’s most, but a huge proportion of households have a solo parent, whether it’s the parents are separated from each other or one is not there for some reason. And then there’s so many other versions of family. And it doesn’t have to be one mom, one dad. And oftentimes, there’s another adult who’s taking care of the kid and, well, I’ll mention this.
I made a podcast during the pandemic called Gravity. And it’s about thinking about things differently, in particular around hardship. And one of the episodes is about family. And I wish we had included even more of what the person said. We interviewed Andrew Solomon who is a gay man and writer who wrote a book called Far From the Tree about raising kids who are different from you.
And at the end of this long research process to write the book, he and his husband decided to have a child. They hadn’t even known whether they would, and it’s sort of talking to all these parents of diverse children. He learned so much and then wanted to be a parent at the end. And he even when we were having this discussion, some of it didn’t make it into the show. But he even talked about, what’s the word? He actually talked about this group that was polygamist in Brooklyn.
And then he talked about all different kinds of family structures, or LGBT folks and making a chosen family. And it just was really inspiring. And I think the other thing for family is just there’s so little structural support for childcare, universal childcare. And just thinking about caregiving for parents, caregiving for anybody but caregiving as national infrastructure. That is real work and unsupported and there’s a huge gender issue there and just wow, we could have a lot more support for parents and caregivers.
Krista: Yeah. I think a lot of my listeners are nodding heads.
Lucy: Yeah, or sandwich generation, there’s parents and it’s a lot, a lot.
Krista: Yeah, I feel like it’s a lot for me and yet I am in comparison, it’s not a lot at all. So you can only imagine when you think about how much more intense it could be and given all the privilege that I have and all the support that I have.
Lucy: Yeah, totally, right.
Krista: So when you think about the early days of grief and let’s just be super general, first couple of years. If you could go back and tell yourself something, give yourself some advice, what do you think you might tell yourself?
Lucy: I mean, I think I would probably tell myself that what my mom was saying was true. You won’t be lonely like this forever. Your life will be meaningful again, just keep going and it will happen. And then I think the very practical advice is do try to do the basics of taking care of yourself and your body. Try to be sleeping regularly. Try to eat regularly. Try to exercise or go outside in the sun, schedule regular get-togethers with a friend so you have something to look forward to. Consider getting a therapist. All of those things, a support group, etc., but yeah, it definitely will get better and you’ll feel like a person again.
Krista: How much do you think you would have believed yourself if you had said that?
Lucy: If it was me, I would have believed it, if it was me for the future, I would have believed it, but I wouldn’t have believed that [crosstalk].
Krista: That woman knows what she’s talking about, yeah.
Lucy: I would fully trust me, I would not do me wrong. I mean not, it’s hard. It is hard.
Krista: It is hard, yeah, it is hard to imagine. I think too, I wish I would have known, only things that honestly I’ve learned recently about what was going on in the brain in grief. It would have helped me feel less crazy.
Lucy: Like what?
Krista: I didn’t really understand why you know something intellectually, but don’t believe it emotionally. Like when the garage door open and I know intellectually it’s not him there’s a part of me that goes, “He’s back. He’s home.” And I didn’t really understand that it takes time for the brain to relearn so that it can make accurate predictions. And I also would have wished somebody would have told me that, “Hey, you’re going to yearn.” And partly that is your brain’s way of trying to find this person who it has encoded as super important to you, and that doesn’t have to make rational sense. It’s okay, because I’m a very logical person.
Lucy: That’s really interesting.
Krista: It would have been really nice to understand, none of this needs to make sense to you for you to have faith that you aren’t a crazy person. I know that Paul told you before he died that he wanted you to go have another relationship if you wanted one. What’s that been like for you to date? I know you said you’ve fallen in love and out of love once since he died. Can you talk about that?
Lucy: Yeah, the person I fell in love with actually was a widower also, which was really helpful because we both understood you can love two people in a situation. Yeah, and then right before the pandemic was thinking, I should make an online profile. I’d never done it before. And then it was the pandemic. So that busted up two years of that and then now I’m just starting to think about it again. And it’s hard because I’ve never made an online profile but that is the deal now.
And my sister, I don’t know if I went to it, my sister’s like, “You definitely want to. You should.” She’s like, “You just can’t see it now because you don’t know the specifics.” But she’s like, “It’s kind of like if you were like, “Oh, I don’t feel like planning a vacation. That’s too much work to plan a vacation.” But then you end up in Tokyo. You end up in Brazil and you’re like, “Of course I want to be her. Yeah, this is the best.”” And so she’s like, “You just have to bite the bullet and plan a vacation and then you will be happy later.” That was kind of good advice.
Because I almost feel I’m happy enough, I mean I’d like to have sex with someone, but I feel really happy enough. And then I feel I have a lot of intimacy in my life just through other relationships. But I don’t want to look back on this time and be like, “Wait, why was I not dating? That was my 40s.” So I don’t know. I’m on the [inaudible] thinking about it again.
Krista: I think I must have been a couple weeks ahead of you in that because I decided to do an online profile right before COVID and then met someone right before COVID. And then we just bubbled down because I honestly hadn’t had any interest in dating until then.
Lucy: So it was three years basically, three years later?
Krista: Yeah, about three and a half, yeah, where I felt I’m good on my own. I don’t need anything, but maybe it would be fun maybe, so let’s give it a shot, yeah. And then boom.
Lucy: Yeah. And then what, what’s happening now?
Krista: We bought a house together 2021 and yeah, it’s a very different relationship than Hugo and mine. But yeah, combined families, the whole deal. He’s not a widower. He doesn’t have any experience. He did lose his sister to suicide when he was younger. And so he has had a significant loss but no loss of a partner. He’s divorced but yeah. Hugo and I also never talked about it.
Lucy: Yeah. How did you feel?
Krista: I never thought he wouldn’t want me to.
Lucy: Well, yeah, because he died suddenly so you wouldn’t have really talked about it, yeah.
Krista: No, but he was kind of like a heart forward, live for the moment, do what makes you happy kind of guy. So I never really wondered if he would, and honestly, kind of our lives too also. You’re not here anymore, so we’ve got to live for us.
Lucy: Yeah, I totally agree.
Krista: Yeah. So when you started dating the other person, was that a conscious I’m ready to date decision or was it just kind of happened?
Lucy: It just kind of happened. Yeah.
Krista: [Crosstalk] necessary. Yeah, I don’t know. I’m not a big fan of, we need to be in a romantic relationship to be happy. So always my biggest concern is can we find a place where we actually do feel good about life? And then if we want to go forward again and we want to experience that, great, but definitely not a requirement for satisfaction with life.
Lucy: Yeah. It’s also so interesting, all the old ladies I know have a boyfriend. All these old ladies who are our neighbors or my friends’ parents are like, “I’m going to go out with my boyfriend.” And that’s so funny, you’re 79 and you have a boyfriend. But there’s also a lot of structures for having a serious relationship. You wouldn’t even necessarily have to live together. I’m kind of like, “I never want to pick up someone’s socks for the rest of my life.” I’m quite sure about that.
So how does that manifest? So I don’t know, I’m curious about, do you combine households, do you not? What happens if you’re older? What happens if you’re whatever? Just I don’t know, I can see lots of different ways of having a relationship also.
Krista: Yeah, and no wrong way. I know for me, it’s definitely changed. So Hugo was my second husband. And it felt really important to me to be married to him. And partly, I think that has to do with the age of my kids at the time and some of my thoughts about setting an example and some stuff that I feel I’m in a different place about now. But now doesn’t feel important to me at all. And it’s interesting to me because when Hugo and I got married, it really wasn’t that important to him.
And I think part of that’s French Canadian, in Canada, you don’t really get remarried. Everybody’s in a partnered relationship if you get divorced, but it’s not a thing.
Lucy: Yeah, but not necessarily married, yeah.
Krista: His mom and his, or I would say stepdad, but again not married have been together for 30 years and it’s just not a thing. So he got married to me because I really wanted to. And it’s fascinating to me to see how important that used to be and how now I’m like, “Yeah, [crosstalk].”
Lucy: Yeah. It’s fascinating, yeah, a good example, yeah, totally.
Krista: Okay, I have a million other questions. I should revisit the list. I know, I wanted to hear more about suffering versus pain. And I know that might not be the languaging that you use. But I know in your TED Talk, TEDMED Talk, did I get it right?
Krista: TEDMED. You talk about, we really can’t live a life that doesn’t have suffering. And so to paraphrase, you say this in your words please. I think basically we want to figure out how to live a life that includes suffering. So I want to hear more about that. And then also I want to know, do you distinguish pain versus suffering? Are they different to you? Tell me what you think.
Lucy: Yeah. They’re totally different to me. I do use those words. So this is sort of a Buddhist idea I think. But I went through an episode of depression well before Paul was sick when I was a medical resident and started seeing a therapist who was very helpful. And one of the things that she did for me was so helpful was thinking about, reconceiving about this. And I remember one day she had a whiteboard in her office and she wrote on the whiteboard, pain plus non-acceptance of pain equals suffering.
Because I do think there is pain for sure in all these different ways in our lives. And then pushing back against it or not accepting it is another layer. That increases the pain or painful experience, I think. And so over the years I’ve thought a lot about suffering is not some side thing that happens that we’re trying to just avoid. Just it will happen to people in all kinds of ways. And for people listening to this show it’s happened potentially in bigger ways than it has to a lot of other [inaudible], but it’s a thing.
And all around the world and all across human history, there is lots of hardship. And then I think the interesting other part about thinking about that is when should you accept it and when should you not accept it? So if it’s something that you really can’t change, it can be so helpful to work on acceptance so that you can soften up to what’s happening and not push against it in a way that’s going to hurt you more, that’s hard. But meditation helps, and different kinds of therapy help. And I think it’s a healthy thing to try to do.
And then there’s other types of suffering in the world, primarily about injustice, where you wouldn’t accept it. You would instead push back against it in all kinds of different ways, protesting or changing policy or whatever. And so I think there’s an interesting thing to try to think about what do you accept and what do you not?
And there is actually this beautiful article that I’ll mention, I think it’s Innervation and it’s an article by Ady Barkan. His name is spelled A-D-Y and his last name is Barkan, B-A-R-K-A-N. And he has ALS and he’s a young lawyer and activist who was diagnosed with ALS in his early 30s. And he wrote this beautiful article about the Serenity Prayer. And deconstructing the serenity prayer and reordering the serenity prayer and trying to think, for me as an activist who now has ALS, activism is defined by resistance.
But then I think that in order to be okay with what’s happening in my life, I have to learn how to accept and dealing with this really serious illness. And so that’s a great piece to read and reflect on acceptance. It’s really beautiful.
Krista: Thank you for that. We’ll try to find it and link it in the show notes. Yeah. So how do you put that into practice on a daily basis? How do you notice when you’re suffering? How do you pivot? What do you do? What’s that like for you?
Lucy: That’s a good question. I mean now that I feel this reorientation is important to me and helpful to me, I think I try to notice when to apply it. There were some things happening with my daughter at school where we had to make a pivot and we ended up going to a different school. And I spent so much time in the weeds thinking about it and just trying to figure out how to handle it and help her and it’s worked out so fantastically. But it’s just really thinking about it and stress out about it.
And my best friend, I mentioned this book by Andrew Solomon called Far From the Tree that I read before I got pregnant, also while thinking about having a child. And my friend was like, “Hey, you know that book you love Far From the Tree, it’s about a lot of families who are raising a kid who surprises them in some way or is different from them in some way.” It’s all these different identities, everything from deafness to autism to even a child who commits a crime. Just how do you understand a child and what does love mean as a parent?
And she was like, “Instead of trying to solve this whole thing like a riddle for yourself, maybe you should just go read that book again. Maybe that’s actually what’s going to help you feel grounded.” And I was like, “Oh, yeah, that’s right. It’s stepping back to a bigger picture of what does it mean to be a parent and how do I fit into this tapestry of parents across space and time?”
So how do I understand that my stress or my suffering as a parent is not unique in a way that’s actually very helpful to be like “Oh yeah, we’re not the only family who’s had to answer questions. We’re not the only family who’s not had a straight path.” And so I think just that kind of thing has been helpful.
Krista: What was it like to re-read that book?
Lucy: I’m looking at it on my table right now and I haven’t cracked it yet. But she was like, “Just read the intro, the intro.” Even just seeing it on my table so far I’m like, “Okay, it just feels grounding.” But I need to actually read it.
Krista: It’s so interesting that you can feel grounded just looking at a book, having not even opened it yet again. It’ll be interesting to see. I think, for me and any time I reread a book, I’m always in a different place in my life and so it’s so fascinating how I pull something out that maybe I didn’t notice before or it means something different to me than it meant in the first place.
Lucy: Yeah. I’m sure I read it trying to decide whether to get pregnant and then now I have a nine year old and that’s just such a rich, beautiful experience and she’s amazing. And so to read that and think about her and think about how did you raise this person and come to know this beautiful person as a parent, and what’s your role? Yeah.
Krista: Yeah. I have a 19 year old and a 16 year old and I can tell you that has evolved quite a bit as they age. And they’re still relatively young, all things considered but yeah, reassessing my role. Something kind of unrelated, but I was really curious when I read the book, there’s a passage that’s something like the easiest death wasn’t necessarily the best, that the two of you had agreed on that. I really wanted to know more about what you meant by that, what are your thoughts on the best death? What does that mean to you?
Lucy: Yeah, I think in that part Paul was writing about how do you decide? I can’t remember the details, so I don’t know if I can reference that. But that’s basically, he’s talking about being a doctor and helping people decide, do they want to use life support or not and all those kind of phony questions about quality. I mean it’s so funny, people talk about the good death. And I don’t think there’s such a thing as a good death. It’s just it is hard, it is sad. I’ll never again read, to die peacefully surrounded by his family. I’m just like, “Oh, my gosh, that is such an intense process, day.
You know what I mean? It’s so intense. And then I would also say this about, I remember when Paul again, we knew Paul was dying of cancer and we were two doctors and we had been present at a lot of people when they were dying. And I remember being pretty preoccupied about, what if I need to represent you and how am I going to help you choose what’s best for you or help you be the one choosing? And how would I know what technology to use and not and stuff like that? What if you suffer unnecessarily?
I was just like, “I don’t want you to suffer unnecessarily.” And I remember him saying, “You know what? The last day of your life”, this was so sweet, he said, “The last day of your life is not the sum of your life. The sum of your life is the sum of your life.” And so he’s like, “Whatever happens, you will have done your best and last day of your life is just one day.” And I was like, “Oh my God.” It was so helpful and so lovely. And I feel like everyone just does their best and there’s always uncertainty and there’s always something you could regret.
And you always pretend, well, maybe wish you did something differently or wonder if you did right by the person or whatever. And I just think that’s so common. And all you can do is just do your best.
Krista: Yeah, we don’t have the benefit of hindsight.
Lucy: Totally. And even for us as two doctors, I was thinking, is this really it? How do we know? Is this it? I don’t know, I can’t tell. And that’s two doctors in a pretty relatively brutal situation.
Krista: Magic wand question again. If you could wave your magic wand, as it pertains to end of life care. What kinds of changes would you make?
Lucy: Yeah. I mean I think the main thing is, I would love people to know about palliative care and have access to palliative care. And just there’s hospice, which is a little subset of palliative care. That’s for people who have a likely prognosis of six months or less. And then there’s palliative care, which you could be going through a curable illness like lymphoma needing a bunch of chemo. Or you could have a long term illness like Parkinson’s or heart failure or kind of advanced cancer and stuff like that.
And palliative care, I think if we rebuilt healthcare, exploded it and then rebuilt it, palliative care would be what all of it was. Because they’re basically specialists in thinking about how do you make healthcare decisions that fit your life? How do you maximize your quality of life? And then when you’re facing a hard decision about healthcare, how do you think through that decision and make the decision that best fits your values in the face of uncertainty or in the face of confusing options?
And they are just amazing. They’re a team with usually a provider, a doctor nurse practitioner, and then often a chaplain, a social worker, nurses. And they’re just experts in shaping your quality of life. And like I say, they can help people at any stage of illness. And they also, interestingly, think of the family as their patient too. So oftentimes, the family could have a separate check-in with them about coping or they just are amazing.
So I feel like if you at all feel like that sounds helpful for some other future situation, they’re just amazing. And then there’s some evidence that people who have an advanced directive are more likely to die in a location that they would choose, and to have satisfaction with their carer, and to have their family feel, have less anxiety or depression after they die. But those are some of the things I think.
Krista: I love what you said about it being value driven. And my assumption is that because everyone’s values are so unique that that also means it’s not about the care team in any way. It’s about the values of the individual person and family. I don’t know if this is an issue for you, but I just see it in a lot of widows that I work with kind of comparing and despairing about how their person died relative to how other people’s person died. Did your brain offer you very much of that, wishing it had been different or making it worse or any of that?
Lucy: No, not really. I was, at the time, there was the Facebook group, Hot Young Widows Club. It’s not there anymore but it was Nora McInerny’s homegrown thing. And then it had 1,000 people in it on Facebook. And that was very cool because it was the person, could be your spouse or not. They could die suddenly, they could die not. They could die by suicide. They could die by cancer. And there was just this commonality and everyone in the grief experience between everyone. And everyone was really funny and really supportive.
Someone would post that they were lonely and then 40 people would comment or people would be like, “Guys, I just took my husband’s phone back to Verizon and then just sobbed in the store and yelled at the guy. And how many people have done that?” And then everyone’s like, “Me too.” O people would ask a serious question or a dating question. It was wonderful and so I think I didn’t do comparing. I just felt, through this one support group, I felt at least in that culture and group there wasn’t comparing. It was really good.
Krista: I love that you found that and I love that we live in an age where technology supports that kind of connection. Because how many other women in your real life did you have that actually understood anything about your journey?
Lucy: Right. Zero. More now but zero.
Krista: Yeah, for sure. And I always tell people too, because not every group out there on Facebook is like that one, sometimes.
Lucy: Yeah. Some of them are a little scrappier, just don’t fit with you.
Krista: Yeah. You’ve got to keep looking until you find it because they are out there. Was there anything else that you wanted to cover, talk about, that we missed, things I could have asked you and didn’t?
Lucy: Yeah. I mean, I think there is this interesting thing after someone dies. I mean, I just wanted to mention it because I love Paul so much and all the things I said. And right when he got diagnosed, our marriage was going through a hard patch. He actually wrote about it. And I’m so happy he wrote about it. It’s at the beginning of the book and I think, I mean partly, I think as a reader, you read that and you’re like, “Okay, this guy’s not going to sugar coat and he’s not going to make his life look perfect.”
And I do feel for a lot of people you also have a complicated marriage or you also have a regret about something. And I just feel that’s interesting because our marriage ended up really solidifying after he got sick. I think one of two things can happen when you take stock. But I don’t know, I just wanted to mention, it’s just nobody’s situation’s perfect and you can have obligated feelings after someone dies for a whole lot of different reasons and be loving them and be caring for their legacy.
And then for my daughter, also Paul needs to be a real person, not just reified, because that can happen after someone dies. And it’s, no, he was real messy, normal, funny, goofy, late for everything person.
Krista: Yes. Hugo’s favorite word was the F word, and whenever he said it his throat would flare up.
Krista: I love that. I love what you said about the and. It really is about the and. And I’m really glad that you said that too, because that was one of the things that struck me about your story, first of all that you persevered and went to a therapist specializing in people who are going through cancer and did all that work. But yeah, it can go, I think you’re right, one of two ways. And I notice sometimes too in the work that I do, people will assume it’s only for those that had ‘happy’, can I use that in air quotes? When in reality all the time, no, that’s not, I mean, yes, happy, but what does that even mean?
Happy is inclusive of a whole lot of ands, and sometimes those ands are affairs, and sometimes there’s really challenging situations and a lot of real humanness that happens in marriages, they’re just not picturesque always.
Lucy: Yeah. So it’s nice to be able to connect with people about that. And I feel that’s something widows can connect with each other on too, just all the and, and, and, totally.
Krista: Sometimes there’s stuff you find out after.
Lucy: Yeah, I know. There’s some really intense, that’s a whole other experience that I know some people are going through. That’s a real challenge.
Krista: It is a multifaceted opportunity for challenges, we’ll say that. So where can people connect with you if they want to learn more about you?
Lucy: So I am on Twitter although less recently, but still.
Krista: Are we still calling it Twitter?
Lucy: This is called X, I am.
Krista: I can’t handle it.
Lucy: I’m not going to call it X honestly. Yeah. So I’m @rocketgirlmd. And then like I say, I have this podcast archive under Gravity. And yeah, those are the main ways to connect. Thanks for asking.
Krista: Okay, yeah, we’ll link to all of those in the show notes to make it easier for people. Thank you so much for being willing to come [crosstalk].
Lucy: It was so nice. I really appreciate it. And I think your work is so fantastic. I think you’re such an example. And then the way you’re leading other people is so wonderful. And it’s a club we don’t want to be in, but awesome people here too, so thank you.
Krista: Well, thank you. Yeah, let’s keep in touch.
Lucy: Yeah. Totally. Thanks a lot. Okay, alright, bye.
Krista: Take care.
If you like what you’ve been hearing on this podcast and want to create a future you can truly get excited about after the loss of your spouse, I invite you to join my Mom Goes On coaching program. It’s small group coaching just for widowed moms like you where I’ll help you figure out what’s holding you back and give you the tools and support you need so you can move forward with confidence.
Please don’t settle for a new normal that’s less than you deserve. Go to coachingwithkrista.com and click work with me for details and the next steps. I can’t wait to meet you.