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Description

The best way for Dr. Paul Kalanithi to process his terminal diagnosis was to write a book about accepting death. His wife, Dr. Lucy Kalanithi promised Paul she’d see the book through publication. Since then, she has shared her story all over the world and has helped people become more comfortable talking about death, grief, and acceptance.

 

• Listen to Dr. Lucy’s podcast, Gravity.
• Read Paul’s Book, When Breath Becomes Air

 

Please note, In Recovery contains mature themes and may not be appropriate for all listeners.

 

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Transcript

SPEAKERS

Dr. Lucy Kalanithi, Dr. Nzinga Harrison

Dr. Nzinga Harrison  00:06

Hey, IN RECOVERY listeners. Thanks for coming back to join us on this week’s episode. I’m your host, Dr. Nzinga Harrison. This week, we’re going to be talking to Dr. Lucy Kalanithi about grief and acceptance when you’re going on the journey with a loved one that you know is dying. Dr. Lucy’s husband, Paul, was diagnosed with stage four lung cancer. When they were only in their 30s, he started writing a book about facing mortality called When Breath Becomes Air. And Dr. Lucy brought the book to publication after he died 22 months later. She’s a clinical associate professor of medicine at Stanford, and an advocate for cultural change around healthcare value. She’s the also host of the podcast GRAVITY. Thank you so much for being here with us. Dr. Lucy.

Dr. Lucy Kalanithi 

Thank you so much for having me.

Dr. Nzinga Harrison 

So we want to spend you know, we’ve been this entire season, really talking about resilience after the COVID pandemic, and that has stretched into grief and acceptance in so many ways about so many different things. And so we’d really love to spend today talking to you about the grief and acceptance work that happens when you know your partner is about to die, as in contrast to when it happens suddenly. So talk to us about the journey that you and Paul went on, and how grief and acceptance was part of that.

Dr. Lucy Kalanithi 

Yeah, so my name is Dr. Lucy Kalanithi. I’m an internist and physician and widow, like you said, my late husband was diagnosed with stage four lung cancer. You know, even knowing that Paul was going to die I, you know, and like, coming to some degree of acceptance of that. It was still so shocking when it actually happened. Which I guess even surprised me like the just the existential force of losing someone that you love. It’s almost liked a baby being born, right? Like, you know, it’s gonna happen. But until it actually happens, you don’t… It’s just so it’s still so shocking and surprising. And you’ve suddenly realized that your life has totally changed in a moment.

Dr. Lucy Kalanithi  02:27

And I think when you lose someone you love, it is so surprising, just like they were there. And then they’re just suddenly not there. Like they’re not there. And so I don’t know, I think there’s a lot of things in life that are like that, right? You know, it’s coming up, but in a way, there’s no preparation you could do. And at the same time, I was really grateful for the time we had, because we could have conversations that helped me going forward. And I think a sudden loss can be even harder for that reason that you wish you might have had knowledge or time or conversations or something like that.

Dr. Nzinga Harrison 

Can you share with us? Like, what were some of those conversations? What were the topics? And did you just get to those topics organically? Or was there intention about things that you wanted to talk about before you knew he would die?

Dr. Lucy Kalanithi 

Yeah, so a lot of it kind of came about organically. Paul, when he was first diagnosed, has had some kind of ominous symptoms. And we were both really worried that maybe they meant cancer, or maybe they met another serious illness. And then when we got the news that he actually had metastatic cancer, we were like, we had both we were both lying in his hospital bed together. And he said, I want you to get remarried after I die. And isn’t that wild? And I remember, first of all, it was so sad and like a shocking thing to say to your spouse because obviously that’s not what you hope of a, you want to have a long, happy marriage and but at the same time, like he sort of opened up a lot of those conversations like just in that one sentence because he’s sort of saying like, I’m going to say out loud, what’s actually happening and then I’m showing you that it’s okay to bring it up, talk about it, talk about hard parts of it, obviously.

Dr. Lucy Kalanithi  04:26

And then it just was also so loving because I think the idea you know, he sort of was like saying, I love you independent of myself, right? Like I love you into a future where I won’t even be there. And so that just felt immensely loving. And I was kind of shocked that he got his head around some of it that quickly. But then even that said, I think then you map all over the place just in terms of your emotions and really coming to terms with it, but that was one example. And then also, you know, there were some things that remained a little bit untouchable, like at one point I asked him, you know, is there anything that I should know about, like your wishes after you die in terms of like, what might happen to you or your body, and he didn’t want to talk about that he sort of said, like, you can decide about that. And then, like, clearly didn’t want to talk about that. And so a lot of it, I kind of took his lead.

Dr. Nzinga Harrison 

It’s so like, what a beautiful gift for him to say, I want you to get remarried after I die. Because I think this is one of the very common ways that people who are widowed, have a hard time getting all the way to acceptance and redefining their life, kind of without that person in it, because it feels like a betrayal.

Dr. Lucy Kalanithi 

That’s so right. Isn’t that interesting? I totally agree. It’s like that happens in so many different ways. Like, you wonder if you’re like, too happy too soon. am I crying enough? am I crying too much? Like, and then I, you know, my own experience, I had some of those feelings to I fell into and out of love since Paul died and had some of those feelings even still, and but I think my personal experience of it that I think a lot of fellow widows and widowers have is that you don’t stop loving your person, you know, you realize that you can love two people at the same time and think, you know, if someone had a child die, maybe, it seems so obvious that if they had another child, they would never stop loving the first one, they would never stop having the first child as part of their family in their heart. And so I don’t know. That kind of makes sense to me now that you can, you can hold on to that love as well and have space for all of it.

Dr. Nzinga Harrison  06:57

Yeah, it’s such a healing perspective. And I think, also to this idea that you never really can be prepared, right? Like you said, yes, I knew it was coming in still, when it came, it was a huge shock. I understand how that’s definitely the case. But we have such a hard time in this country, in our culture, for sure. Talking about grief. And so it sounds like Paul was also really giving in the way that he brought up topics that you may have felt like, I’m not sure if I can bring this up. Right? Like, we’re gonna talk about the hard things or even when you said, what do you want to happen with your body after you die? And he’s like, no, that’s on you. I’m not trying to talk about that. But at least the opportunity kind of, you know, he opened up to really talk about things that we might otherwise stay silent, because we’re not sure if it’s okay to talk about that with a dying person. Can you kind of walk me into that a bit?

Dr. Lucy Kalanithi  08:04

Yeah, sure. And I guess like something I’ll say, piggybacking off of that. This is like a grief grief situation instead of talking to the dying person. So I can also get back to that too. But when you were talking about, you know, we don’t know what to say, or we’re afraid to bring it up or whatever. You know, my husband was a writer, he wrote a memoir. And then after he died, I ended up doing a book tour for his memoir. And what that led to was a lot of conversations for me in bookstores, you know, at speaking events, talking with other people who had lost someone going through something hard. And right at that time, was when strangers or reporters started asking me about Paul. And it really taught me like how good it can feel to have people ask you about the person who died. I think, prior to this personal experience, I think I kind of thought like, oh, like, I don’t want to ask this person.

Dr. Lucy Kalanithi 

Like, you know, tell me about the loved one who died, like, what was your mom like? Or, like, you know, oh, I’m so sorry for the loss of your mom, like, you know, whatever it might be. It’s like, Oh my gosh, maybe I’m gonna remind her that her mom died. Or like, maybe she’s gonna start crying or whatever. And I think when you’re the grieving person, you know, everybody’s different. But my experience was, like, it felt so connecting, it felt I was never analyzing what someone was saying about it. I just felt, it felt really good to talk about it’s not, it’s like, you know, you could never be reminded that your person died. You’re already carrying it so deeply. And so..

Dr. Nzinga Harrison 

Yeah, it’s like, we’re so afraid. Like you said, You can’t remind me that Paul died. I already have that deep inside. You can’t remind me that my mom died. And it actually helps me for you to ask me about it. It doesn’t hurt me because I think we kind of get programmed with this idea that grieving people are fragile and so don’t talk about it because you might break them. When actually talking about it helps.

Dr. Lucy Kalanithi  10:03

Right. Totally. And like your personal experience, as the person going through something hard is like it’s there all the time. It’s part of your experience all the time. And so for someone to ask about it, it doesn’t seem jarring. It just seems like, oh, yeah, right. I’m thinking about that all the time anyway.

Dr. Nzinga Harrison  10:18

Right, right. Well, when we come back, let’s talk more about Paul and his journey with acceptance.

Dr. Nzinga Harrison 

Before our break, we were just about to talk through your perspective as Paul’s wife on how he went about his journey with acceptance. What do you know about his journey of acceptance from the time he was diagnosed with metastatic cancer to the time he died? Did you like were you able to share into and have insight into his journey also?

Dr. Lucy Kalanithi 

Yeah, so Paul was an introverted person, and the thing that helped him the most was writing. And so you know, he was a neurosurgeon, but also someone who was really deeply in love with literature and writing and words. And so he ended up using writing as a way to process and then he loved people who were going through a crisis. So he actually thought he would become a psychiatrist. And then was one of those people who walks into the OR, and falls in love there, too. And so when Paul was diagnosed, I think he’d thought he’d be able to follow in the footsteps of his patients, or, like in the other thinking he done, and he just was, you know, he later wrote about how it seemed just like a wasteland like a, like, there was no path forward, there was nothing to follow.

Dr. Lucy Kalanithi 

And so, you know, initially, he wanted to think about, you know, like, how much time have I got left? Like, how can I get the information I need about this disease? What are the median survival? What’s the Kaplan-Meier curve, you know, trying to grapple with existential distress is like, trying to quench your thirst with salty water, you just can’t do it. He’s like, the only way through this is really to think about what it is to be a human being. And so that’s like, you know, that doesn’t come out of the science they teach you in medical school that comes out of like human relationships and other ways of forging meaning. And so that was part of the process for him a lot of reading a lot of writing.

Dr. Lucy Kalanithi  12:33

Sometimes just having someone else put into words and reflect back to you what you’re going through is so helpful. And then a lot of it was when you’re diagnosed with a serious illness or you’re facing something else, that’s a real upheaval. in your life, you can sort of lose your identity for a while, right, like feel like you’re floating in space and time in like a lost identity. And so a lot of it was rebuilding other things in his life that would be meaningful, because he was no longer going to be a neurosurgeon, neuroscientist for decades, right, he sort of had to come to terms with what do I do with each of these days that I have left? And how do I hold back on to who I am and who I can be. And that was part of how we ended up deciding to have a child during that time, the struggle to find acceptance was part of what was meaningful. Which was a different kind of battle than what you think about when people talk about cancer as a battle, you know?

Dr. Nzinga Harrison

Yeah, no, I mean, it’s so it might sound a bit counterintuitive, that part of the journey of acceptance, when you know you’re going to die soon is how to find meaning and purpose in each day. Because we all know there’s an endpoint, but it’s so far that we don’t have to have it be part of our daily lives. So when you suddenly know that that endpoint is nearer, still how important it is to not let that be the defining feature of your everyday, right? It has to be life meaning and purpose.

Dr. Lucy Kalanithi  14:15

Right. I like that point. Right. And like, even if you’re dying, you know, until you die, you are living.

Dr. Nzinga Harrison 

You are alive today, right? Right. So talk to me about like, even as you’re finding that life, meaning and purpose, so you all decided to have a child even though he knew his time was short. What’s the role, kind of between the two of you of honesty, as you’re navigating this grief and dying process like honesty between the two of you but then also like, your honesty with yourself about how you’re doing, what you need, his honesty with himself about how he’s doing what he needs.

Dr. Lucy Kalanithi 

Yeah. I got lucky in a way because I had mentioned he said this beautiful thing about I want you to get remarried. But I feel like when Paul got sick, somehow we were suddenly able to give each other the benefit of the doubt, like, you’re acting a certain way, like, you know what you do, what you need to do. And then I know you’ll come back to me. Something about like, it was so stripped bare that it was just like, of course, we’re going to need each other. But like, let’s also give each other a lot of spaciousness. I don’t know how it happened. But like, part of the truth was looking out for what the other person’s needs and truth were and so that decision to have a baby. Like he was thinking like, you’re going to be a single mom going forward. What are you going to need to do that? Like who’s in our community? Who can help you? How can I set things up for you everything from logistically to financially to just whatever it would be?

Dr. Lucy Kalanithi 

He was really like, scrappy, and trying to figure all of that out as much as he could. And then for me, I was sort of thinking, like, what’s his emotional experience of this going to be? Because, you know, if you know, you have limited time with his child, and the thing that really clinched it for me, that also taught me a lot about life. We had this conversation, where I said, you know, do you think that if we have a child, and it’s, do you think if we have a child, it’s going to make dying so much harder for you. He said, wouldn’t it be great if it did make it harder? And just this idea of like, you can’t have the fullness of love unless you are also willing to lose it like. How great would that be? To be so in love.

Dr. Nzinga Harrison  16:46

That’s powerful. That’s so powerful. And it reminds me, my husband’s closest cousin died unexpectedly. And their aunt was talking at his funeral. And it was I mean, it was awful, right? Like the grief is acute, and it’s super dense. And she said, this pain that we feel now is the price we pay for how much we loved Calvin. It feels like the same thing that you just said, when he said, wouldn’t it be great if it made it that much harder? Because like, that’s how much I loved.

Dr. Lucy Kalanithi 

Right. It’s like, it’s reciprocal. It’s like it’s proportional. Yeah, I totally agree with what that person said.

Dr. Nzinga Harrison 

Yeah. And now I’m thinking about this past year, where there has just been grief on grief on grief on grief on grief. And you’ve made part of your life purpose, talking about grief, as an advocate. How has that been for you? And like, how have you been taking care of yourself through all of this past year?

Dr. Lucy Kalanithi 

It’s really helpful to just name it, you know, I think it used to be that this kind of thing was sort of in the shadows, right? But now, it’s like, literally everybody has writing that they’ve lost or mourned, or, you know, are waiting to come back to or will never have. And, you know, as a doctor, I’m sure you are seeing this too. But it’s like so many more people have, like, I think anxiety and depression symptoms quadruple during the pandemic, and people have re-entry anxiety, and you know, there’s burnout. So, you know, I think for me, a lot of it has been, like setting boundaries or setting realistic expectations for myself. I found therapy really helpful. And mindfulness meditation really helpful. And then, I think, exercise and like trying to sleep and not be doing scrolling. It’s kind of like all things we tell our patients, but all those little things add up. And then it’s just validating to know that we’re all trying to figure this out together. So I don’t know all of those things are true. Childcare is the other one.

Dr. Nzinga Harrison  19:17

I know, right? I think one thing back to this idea of the importance of talking about grief. Is there too much talking about it? Like you said, having to set boundaries for what you could and could not do was an important part of taking care of yourself. Like, is there a time where you’re like, I have to take a break from telling my impulse story, to protect myself.

Dr. Lucy Kalanithi 

The thing that was true for me after Paul’s book came out with this question of like, how do you choose what to talk about? I do think I had to kind of listen to like what felt helpful to me and not And I actually loved doing this book tour for him so much. And at the same time, I shaped it a little bit into what the parts were that I was carrying and what was relevant to me. So initially, people were asking me about Paul and his writing and the process of writing and the experience of serious illness. But then me being a doctor, I was like, you know what, this is a way for me to talk about advanced directives, or this is a way like, this is a way for me to, like, bring in some of myself, and what’s important to me professionally. And then I got to talk, you know, like, today, we’re talking about grief, of course. So that’s like my story, too. And then I can talk about caregiving. And then when I fell in love again, like I mentioned that sometimes, like, again, it’s me telling that message about like, love after loss. And so I think it did feel like I needed to have my own story be part of it. Like that was the version of like, what I didn’t want to lose.

Dr. Nzinga Harrison

Part of the grief and worry that I carry this entire last year was so many people dying alone, because their loved ones couldn’t be around them because of COVID distancing. And so many health care providers having to hold all of that grief, that usually would be shared by loved ones, right, like always having to be the one at that bedside while a person is dying without their loved ones. So talk to us about the advocacy that you’re doing around the tactical and structural things like Advanced Directive, but also just about how to get the caring and caregiving that the person who is dying needs as they’re dying, but also that the support system needs as their person is dying.

Dr. Lucy Kalanithi  22:15

There’s something like 40 million people in the US who are caring for a loved one to some version of illness, including mental illness. And, you know, I think when you’re going through that, you can often feel like you’re the only one. And then of course, you know, your needs are so important, getting a break and getting the resources you need. And there’s so much that the health system asks of families that I feel like is often too much, you know, like, including medical and nursing tasks. And including the fact that we don’t have great coverage for long term care and for care at home. And then for a family who’s you know, supporting somebody or a person who’s going through a serious illness, I guess another resource that I think is super helpful is seeing palliative care specialty team.

Dr. Lucy Kalanithi

So that’s another tip I would kind of mentioned to people and, as you know, is medical specialty that’s focused, really specifically on quality of life. You know, Hospice is a part of that for people who are really close to dying. But then in addition, palliative care can work alongside any specialists, other specialists, whether it’s cardiology, for heart failure, or neurology for Parkinson’s, and you don’t have to be anywhere close to dying to have a palliative care team that can help you through thorny medical decisions, weighing pros and cons, and then focusing on your quality of life as you’re going through medical care and illness. And so they are immensely helpful for anybody who’s struggling with logistics, spiritual support, trying to make difficult decisions, and they also include the family as their care unit.

Dr. Lucy Kalanithi  24:06

So they don’t think about the patient alone. They think about the patient in their community and their family. And so I always would encourage people if you feel like it might be helpful, see if you can talk with a palliative care specialty team. And then, you know, they can also help with some of those hard conversations like how do I approach this with my loved one? Or do I need to think about an advanced directive and so an advanced directive is a piece of paperwork that does two different things. In healthcare, lets you name who would speak for you if you were too ill to speak on your own behalf. So someone who knows you well, someone you trust, and then it also specifies what type of medical care you would want if you were really sick and couldn’t say that in a really complicated medical decision where clinicians are looking to your family or loved ones for help, the thing that is most helpful is to have somebody who really knows you who knows what’s important to you in your life. Like, for Paul, you know, the thing that was most important to him was being mentally lucid to be able to keep writing and to spend time with our family. And so when he became too sick, and knew that he wouldn’t really be able to be mentally lucid anymore, like, that was the end for him. And so

Dr. Lucy Kalanithi 

it’s a really deeply meaningful thing, to try to speak for you to try to help you make those decisions. And it can help carry people through an ocean of grief, you know, and I think, in a way, it’s like, boring and intimidating. And in a way, it’s, like intimate and beautiful. And so even for two doctors, for me and Paul, in the medical system, it can actually be really hard to tell, like, is it really the end? Or like, what’s really happening? And like, how can we know and what if we make the wrong decision, and like, you know, it’s like, it’s so complicated and almost never totally clear. And so kind of all you can do is do your best on half of your person with the information that you have. And I’ll just share this really nice thing that Paul said to me, that helped me a lot where he said, just in case, like, I end up getting medical care that you feel like caused me suffering, or I got, you know, CPR on me and I, it, you know, I wouldn’t have wanted that or like our family’s freaking out, and you can’t tell what everybody’s thinking.

Dr. Lucy Kalanithi  26:34

He’s like, you can just do your best. That’s all I can ask you to do. And he’s like, whatever happens on 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 the last day, you can just do your best and then that’s all you can do, you can just do your best. And so I just have talked to a lot of people who everyone has like a regret or a guilt about something or, I don’t know, I just think that’s so common. It’s almost universal to have some kind of type of feeling of regret or guilt. And so you literally can just only do your best with what you can in the moment with your own emotions with what’s happening with you know, whatever it is. And so I think a lot of people can be proud of themselves and there just is no perfect. And even if it went perfectly like your person still died, I think I’ll never read like, he died peacefully with his family around him like, and just, you know, there’s so much, it’s so heavy, it’s so painful. It’s so like, I couldn’t even like control my body as I was walking away from the hospital room where Paul died. You know, it’s just so intense and hard.

Dr. Nzinga Harrison 

you can only do your best with what you have at the time. And your best is all we need. I love it. Well, I know time flew, but if you can believe it. That is like the whole episode. It was just so effortless and so easy. Thank you so much for sharing your journey, sharing Paul with us.

Dr. Lucy Kalanithi  28:11

Yeah, no, thank you so much for having me. And thank you for what you’re doing with this show. I really appreciate your work so much.

Dr. Nzinga Harrison

Thank you. Thank you so much.

Claire Jones

Okay, everyone. That’s it for this episode. If you want to hear more from Dr. Lucy, you should definitely go check out her podcast. It’s called GRAVITY. We’ll put a link to it in the show notes. But you can also listen pretty much wherever you get your podcasts. Thanks for listening and we will be back next week.

CREDITS

IN RECOVERY is a Lemonada Media Original. This show is produced by Claire Jones and edited by Ivan Kuraev. Jackie Danziger is our supervising producer. Our theme was composed by Dan Molad with additional music by Kuraev. Stephanie Wittels Wachs and Jessica Cordova Kramer are our executive producers. Rate us, review us, and say nice things. Follow us at @LemonadaMedia across all social platforms, or find me on Twitter at @naharrisonmd. If you’ve learned from us, share the show with your others. Let’s help to stigmatize addiction together.