When Paul Kalanathi was 36 years old, he was on the cusp of finishing a decade’s worth of training to become a neurosurgeon — a profession he felt called to. But then he learned he had terminal stage four lung cancer. In a single moment, everything changed in his life. For the next twenty two months, Paul and his wife Lucy grappled with how to live life even when you know you have limited time left. In his last few months, Paul wrote a memoir about this search for meaning in life and death, as well as his experience as a medical student, neurosurgeon, and cancer patient. Entitled When Breath Becomes Air, the book was published shortly after he died.
Today, I talk to Paul’s widow, Dr. Lucy Kalanathi, about Paul’s journey to uncover insights about meaning and significance during his time as both doctor and patient. Along the way, Lucy shares insights about the human side of healthcare, delivering and receiving bad news, and how your identity and sense of self changes when you’re diagnosed with a terminal disease. She also shares her experience of being a widow and of the grieving process, as well as what to say and not say to someone who’s grappling with a tragedy.
- What it was like for Paul and Lucy to learn of his diagnosis
- Paul intellectual journey to find life’s meaning
- What Paul learned about life and death during medical school
- How the grind of medical school makes doctors jaded
- Paul’s approach for delivering bad news in a more humane and compassionate way (and why it’s not a one-time event)
- How a cancer diagnosis changed Paul and Lucy’s life and relationship
- Figuring out how to cope with and live with a terminal illness
- The decision to have a child in the midst that diagnosis
- The connection between suffering and love
- Paul’s transition from doctor to patient
- How Paul’s oncologist helped the whole process
- The last few weeks of Paul’s life, and what his experience can show others in similar circumstances
- Lucy’s grieving process
- What to say to grieving people
Resources/People/Articles Mentioned in Podcast
- What It’s Like to Become a Widower
- Let’s Talk About Death Over Dinner
- What Building Your Own Coffin Teaches You About Life, Death, and Meaning
- Memento Mori
- What Man Understands That He Is Dying Daily?
- How to Protect Your Legacy
- 10 Ways to Help a Grieving Friend
- How to Comfort Someone Who’s Sad/Crying
- Ady Barkan (and his upcoming memoir Eyes to the Wind)
- Love Is All You Need
- Hot Young Widows Club
Connect With Lucy
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Read the Transcript
Brett McKay: When Paul Kalanathi was 36 years old, he was on the cusp of finishing a decade’s worth of training to become a neurosurgeon, a profession he felt called to. But then he learned he had terminal stage four lung cancer. In a single moment, everything changed in his life. For the next 22 months, Paul and his wife Lucy grappled with how to live life even when you know you have limited time left. In his last few months, Paul wrote a memoir about this search for meaning in life and death, as well as his experience as a medical student, neurosurgeon, and cancer patient. Entitled When Breath Becomes Air, the book was published shortly after he died and was nominated for the Pulitzer Prize.
Today, I talk to Paul’s widow, Dr. Lucy Kalanathi, about Paul’s journey to uncover insights about meaning and significance during his time as both doctor and patient. Along the way, Lucy shares insights about the human side of healthcare, delivering and receiving bad news, and how your identity and sense of self changes when you’re diagnosed with a terminal disease. She also shares her experience of being a widow and of the grieving process, as well as what to say and not to say to someone who’s grappling with a tragedy. After the show’s over, check out our show notes at aom.is/breathbecomesair.
All right. Lucy Kalanathi, welcome to the show.
Lucy Kalanithi: Thanks so much for having me.
Brett McKay: So your late husband was Paul Kalanathi, and he wrote the memoir When Breath Becomes Air. He wrote the manuscript in his last few months of life right before he died of stage four lung cancer. Your husband started the book in a hospital room as a patient staring at his own CT scan images. Let’s begin there. What led to that moment when you and Paul learned that he definitely had cancer?
Lucy Kalanithi: Yeah, sure. That was in 2013 in the spring, and he was a rising chief resident in neurosurgery at Stanford. He was just about to finish his long years of training as a neurosurgeon when he started to develop these really ominous symptoms, like he lost 15 pounds kind of inexplicably and developed a cost, and just wasn’t feeling good. At the same time, he had lost 15 pounds a few years before as an intern just from working so hard, and it took a while to get to figuring out exactly what was going on, but ultimately, it was stage four lung cancer, really surprisingly, of course. I’m a physician too, and he was diagnosed at the hospital where he worked and I work, so it was this sort of strange, unmediated experience of having this CT scan and then logging in with your own credentials to the hospital computer and pulling it up and wordlessly scrolling through the images. We knew right away what the diagnosis likely was and what it meant in terms of a prognosis of months to a few years with maybe some more hopeful advances, but you never know.
For people who’ve read the memoir or who haven’t, in the prologue, he describes that moment of looking at his own scan. Then he says something like, “The future I had imagined, the one just about to be realized, evaporated.” That really was the feeling in that moment; it was just this disappearing of who you thought you were. It’s like who you are is so tied up in your future. You’re the same person you were five minutes ago, and you are also a totally different person in a new world when you get a diagnosis like that.
Brett McKay: That’s one of the major themes running throughout the book, is what does your identity mean when you have an event like this happen to you? We’ll talk about that here in a bit, but another theme that runs throughout the book is this question of what makes human life meaningful. This is a question your husband grappled with long before that moment when you two were in a hospital room looking at CT scans. Can you tell us about his intellectual journey seeking answers to this question?
Lucy Kalanithi: Yeah, sure. So this was one of the things that made me fall in love with him, because I just thought he was a really interesting, curious, moral person. I think a lot of us are asking ourselves that question, you know, like, “What’s the meaning of life?”, “What’s the meaning of my life?” He, as a young person, had actually thought maybe he would be a philosopher or an English professor. He went to Stanford as an undergrad and studied English literature and human biology thinking he had some interest in the mind/brain connection, and how do you connect your own identity and morality to living in a physical body, and then ultimately went on to study a graduate degree in literature and in history and philosophy of science and medicine, so was pretty in philosophy and bioethics and literature, and then shocked himself by going into medicine but had become so intoxicated by the thought of the brain as a physical matter but also the seat of identity and love and honor and morality.
So, ended up at medical school, which is where I met him, and then was one of those people who walks into the operating room and never walks out, so ultimately became a neurosurgeon, again, sort of out of this real curiosity, but I think he had initially thought he would be a professor engaging with ideas, and then at a certain point in his mid-twenties thought, “I think what I want to do is be involved with real people facing big identity upheavals and big questions about how to proceed with thorny medical decision-making.” When you’re a neurosurgeon, you deal with tumors, trauma, seizures, aneurysms, and epilepsy, and mental illness, all these things where it’s like, your brain is you, you know? If something goes wrong with it and something goes wrong with your identity and your life, and I think that was who he wanted to be around, was those patients.
Brett McKay: That’s one thing that really impressed me about Paul, because a lot of people when they grapple with this question, “What gives life meaning?”, they do it in a very abstract way. They sit and they read the books, and they discuss. Paul wanted to touch it.
Lucy Kalanithi: Yeah.
Brett McKay: He wanted to experience firsthand.
Lucy Kalanithi: That’s right, and he was interested in suffering too. I don’t know. I think the fact that everybody suffers is so obvious, but also kind of hidden, especially when we have so many fixes to our problems and we have glossy social media. I think he was interested in, “What do you do with suffering that you can’t ameliorate?” There’s some really gritty, interesting human connection to be found there, and I think heartbreak and suffering is what most of literature is about. That was part of it too. It’s like being around fellow sufferers, which I guess is everybody.
Brett McKay: What did he learn about the connection between meaning, life, and death while he was in medical school? Also, what did-
Lucy Kalanithi: That’s a good question, yeah.
Brett McKay: What did you learn too, because you were also in medical school at the same time.
Lucy Kalanithi: Yeah. You know, it’s hard because medical school is just so practical. There’s so much to learn that just learning the science is kind of overwhelming. I kind of thing there’s the looming specter of these big moral questions, but at the same time, you’re just trying to impress your professors and learn what you can. So in a way, medical school was initially not about big questions; it was about grasping the concepts but having the idea that you were going to end up needing to bring your full self to this. I remember in medical school feeling like it was the first time that I had used all parts of my brain at one time, like a really intellectual part and moral compass and tapping into my emotions and reactions. I just remember thinking like, “Oh my gosh, I’m not sure there’s a part of my brain that is not actively engaged in this.” That was really exciting for me, too.
Then, I was just going to mention this other thing that also was the reason I fell in love with Paul. When we first started school, I knew he was kind of like this smart, nice guy in our class, and there’s a hundred people in the class, so you’re kind of getting a sense of who’s the jock and who’s the whoever. Then about three weeks into school, I realized that Paul, on his medical student ID, was wearing a fake mustache. He had been a comedy writer in college and done a lot of sketch comedy, and showed up in medical school and immediately pulled this fake, big, bushy mustache out of his pocket onto his face right before they shot the photo at Yale for the medical student ID. It was this kind of technically really transgressive thing to do, of course, entering professional school, and it stuck around on his ID the whole time. He’s applying to be a neurosurgeon three years later and all of the senior neurosurgeons are seeing this ID face sheet with this fake mustache on it.
We never talked about why he did that apart from just the pure slapstick of it, but I always wonder, was that something that he was doing because he was worried that medicine was also going to change him, you know? I think medicine has a lot of really formal structures, hierarchy, and it’s just arduous and tedious at times. I think when we were entering medical school, we were dealing with the pure complexity and work of it, but also, it is something you have to kind of figure out how you’re going to become you and also be a physician at the same time. I think that was the other question we were thinking about.
Brett McKay: Yeah, I mean it’s a way to keep his humanity. He talks about in the book one of the reasons he fell in love with you is you were looking at an EKG scan and you started crying because you saw that someone died.
Lucy Kalanithi: Right, right. We were just studying in a textbook, and it’s like, that stuff is not abstract. I was like, “Oh man. This scan that we’re looking at literally is a picture of somebody dying. That’s wild.” Yeah, that’s like When Breath Becomes Air, right? It’s just like you see those moments all the time, and I also remember we were studying on his sofa in his apartment. He got this look in his eyes and I was like, “This guy loves me. Okay, this is my guy.”
Brett McKay: This is your guy. I’ve got a few friends that have gone to medical school and they’re doctors now, and when they originally went into medical school, they had these very high ideals of wanting to care for their patients and bring a human element to the practice, but all of them admitted while they were in medical school that the grind of medical school and residency kind of made them jaded and hardened to the suffering of their patients. They said, “It’s a way for me just to get through the day.” Is that a pretty common experience?
Lucy Kalanithi: Yes, it’s really common. It’s actually a big cultural phenomenon that’s being addressed in medicine right now. I’m glad your friends are telling you about that. The major word that’s getting used for it is “burnout,” which is an actually syndrome of de-personalization and lack of self-efficacy. There’s like a syndrome. It’s interesting because I’m really interested in this question actually, because it’s really depressing. I think this happens in a lot of fields, actually. You take people who go into something really for the love of the game, and then something detaches them from being able to do what they hoped. Some people are using the term “moral injury” actually for this, which I think was first used for soldiers. It occurs when you’re trying to do a job for which you have highly conflicted allegiances, and in medicine, it’s like you have a fiduciary responsibility to your patient who you love; in many cases, you’re really connected to them as a person, but then you’re also responsible to the hospital administration and you’re also trying to fight an insurance company, and you also are overwhelmed with how busy you are. I think there’s a form of systemic pressure that actually puts people’s moral impulses, it squishes them a little bit.
I think it’s really hard, and it’s funny because maybe 10 years ago, 15 years ago when this phenomenon was getting named and it was being called “burnout,” it was thought of as kind of like a lack of personal resilience, like people need to work on their coping skills, but I think the thinking since then is like, if you take a bunch of highly resilient people like the people who enter the health professions, I’ve heard someone say, “if there’s a canary in the coal mine, you can’t just teach the canary to meditate,” which is so smart. It’s like, it’s not just a personal issue; it’s like a systemic structural thing. I think everybody’s thinking about how to reintroduce humanity, everything from the payment structures to clinic timing to, of course, the electronic medical record. So yeah, it’s something that doctors are talking about all the time at cocktail parties and elsewhere.
Brett McKay: Right, and Paul, he had a friend that ended up committing suicide because of that, right? From that pressure he felt.
Lucy Kalanithi: That’s right. A brilliant surgeon who jumps off of a building. I’m glad he wrote about it because that was so personally devastating to Paul, and it was one of the other deaths in When Breath Becomes Air, and I’m glad he wrote about it.
Brett McKay: It seems like Paul and yourself were able to, I don’t know, rise about that cynicism that can come with being in a situation. How do you think you two were able to do that?
Lucy Kalanithi: You mean in our medical careers, even before Paul got sick?
Brett McKay: Yeah, even before Paul got sick, in your medical careers. It seems like Paul had this drive to keep his humanity in his profession.
Lucy Kalanithi: Totally. I think some of it was recognizing it as a personally important thing so that you can, at least, be trying to do that. We had a lot of dinner table conversations about that, but also, both of us really burned out at times; I had an episode of depression in residency and developed a lot of skills, actually, at that time, including meditation, that helped me later when Paul got sick actually. I had better coping skills as a result of having gone through that, and Paul just kind of thought about it a lot. There’s a lot of gallows humor and camaraderie in medicine, which actually really helps, but then I think you’re not immune to it. I think you really do have to be looking for ways to hold onto that or stoke yourself as a person, you know? Then, I think when Paul was a patient, he himself became the vulnerable person who’s a hospital patient, who’s literally naked in a hospital bed, and then we had a couple of really difficult interactions with healthcare professionals. I recognized that maybe the person who was treating him was burned out or having a really hard day or whatever, and I just remember thinking, it’s something that I’m wondering how this person is doing, but the moral obligation is so high to be a humane, just person, that I was like, “I kind of don’t forgive this guy. It’s not okay.”
Brett McKay: I imagine his study in literature and philosophy helped too, because those issues were top of mind for him.
Lucy Kalanithi: Yeah, I think so, and I think in a job like medicine, as in many others I would imagine, there’s the tedium of the day today, but then also, the sense of moral mission is always there. It’s like when you’re on hold waiting to talk to the prior authorization for an insurance company, you are realizing that you’re on a moral mission. It’s not just a tedious task; it’s like a crusade on the behalf of your patient, so I think you feel it all the time. It’s actually really sustaining, but yeah. I think Paul’s sense of, yeah, the human mission of medicine and his connection to literature and the human experience and human condition, sure. It’s there all the time. It’s really fun.
Brett McKay: As a neurosurgeon, Paul had to often deliver bad news to patients and their families. Did he have an approach that he kind of settled on in how to make that more humane and more compassionate?
Lucy Kalanithi: Yeah. You know, I can’t remember exactly if he had a really standardized approach for himself. When you’re a neurosurgeon, you see a lot of terrible things all the time, so anything from a terrible bike accident to a ruptured aneurysm to a brain tumor in a young person. It’s sort of as bad as it gets on a daily basis, so he delivered a lot of bad news. I think he writes in the book about really trying to figure out how much a person can handle and understanding that the delivery of the bad news isn’t even a one-time event; it kind of happens over time, and then the news itself or its impact also changes over time. I think Paul said something like, “A tureen of tragedy is best allotted by the spoon fall,” and he also talked about something like meeting a patient in the narthex, not the nave, meaning like wherever they are, you go find them there, and then you try to bring them where they need to be, but a lot of it is on their terms. I think he really did think about that a lot, and it’s actually being taught in medical school, like formal ways to deliver bad news.
For example, there’s this acronym called “SPIKES,” “S-P-I-K-E-S,” which is something like “set up the scene,” and then the “P” is “assess the patient’s perception,” and then “I” is “get an invitation to give the bad news,” and then “K” is “give the knowledge,” and “E” is “acknowledge emotion.” I think it’s an art and a science. We do a lot of practice role-playing in medical schools about delivering bad news, and I think it is one of those things where just because you’re a nice person doesn’t mean that you can do that artfully without practice or reflecting, you know, but it’s one of the things that Paul had decided was really important to him to try to be good at.
Brett McKay: Yeah, I imagine it’s super tricky because some people, you want to give them hope but too much hope, right? I imagine it’s just super hard to figure out what would be best for that person.
Lucy Kalanithi: Totally, and sometimes you can just ask them what they think would be best, but that’s exactly right. There is this huge tension between letting them in on everything that you may know about the course of their illness while at the same time, hope is, it is a human thing to hope, you know? I guess the thing that doctors think about, or that we think about, is there’s a lot of different ways to hope, right? There’s the battle metaphor, especially in cancer, of, “We’ll fight it and we’ll beat it, and we’re not going to talk about any other options other than that,” but I think there’s a lot of things people are fighting for. A big one is fighting to make sure that their family will be okay no matter what happens, and that requires a sense of facing up to all the possibilities that could happen, which oftentimes people are way better at doing for their families than themselves, which is so loving and brave, and then I think there’s this battle for meaning and trying to figure out a new purpose in the face of whatever’s happening.
I think there’s all kinds of courage and bravery that happen, and it’s not just one brittle version of like, “I’m going to fight this disease and put my head down, and that’s it,” but again, it comes over time, you know?
Brett McKay: I thought it was interesting that Paul said, talking about his experiences and encounters with patients and delivering bad news, he said he felt almost like a pastor, and that if he had another life, he probably would’ve been a pastor.
Lucy Kalanithi: I know. I thought that was lovely. I don’t know if that’s true or not literally, but it’s not totally dissimilar, you know?
Brett McKay: No, it’s not. Dealing with that aspect of human life that’s not science, right? It’s like the love, hope, courage, all that stuff that’s part of human reality.
Lucy Kalanithi: Right.
Brett McKay: So let’s talk about when Paul gets his diagnosis. He wrote when he came face to face with mortality, he had lung cancer, it was terminal. I thought it was interesting he said, “It changed everything and also nothing.” What did he mean by that, or what do you think he meant by that?
Lucy Kalanithi: Yeah, it’s interesting, right? That was in an essay that Paul wrote that ended up in The New York Times and ultimately led to the chance to write the memoir. I guess he meant a couple of things by that. He was sort of getting at the idea of “I knew I was going to die and I just didn’t know when, and then I get this terrible diagnosis and I know I’m going to die, and I also still don’t know when.” So he was sort of saying like, “Well is anything really different?”, but I think the thing that was so different is that his relationship to the future had totally changed, and people always tell you like, “Take it one day at a time.” The big thing he grappled with was, “Well what is it that I’m supposed to do with the one day at a time especially when I don’t know how much time I have left?” It really changes, like, “Am I still going to be a neurosurgeon when I’m not actually going to do it for 30 years anymore? Should I keep even going down that path?”
I think that was some of what he was getting at, and then ultimately, so he lived for 22 months after getting that diagnosis. He died when he was 37 and he was diagnosed when he just turned 36. He initially went back to work as a neurosurgeon, and then when he became too debilitated to do that about a year later, he had very fortuitously written a couple of things, one of which went viral and led him to ultimately start writing the manuscript for the memoir, and then we also had a baby during that time. A number of things were growing and changing and happening, even as his body was diminishing. Yeah, just to give a sense of that too.
Brett McKay: Yeah, I mean that’s the paradox that Paul talks about having a terminal disease. Okay, you know very acutely that you are dying. Like you said, we’re all dying at this moment. All of us listening are dying. It’s a-
Lucy Kalanithi: Right, but it’s so abstract.
Brett McKay: It’s so abstract, but you know you’re dying but you’re still alive. You’re not dead until you’re dead, so you have to continue to live until then, and what does that mean?
Lucy Kalanithi: Yes. I think it’s really interesting to try to think about how to rebuild what your life is when something big upends it, and that happened for me after Paul died. Have you seen or heard of this young lawyer activist Ady Barkan who has ALS?
Brett McKay: No, I have not.
Lucy Kalanithi: He went to Yale Law School around the time that we were there for med school, and then became an activist. He’s like a progressive activist. He got diagnosed with ALS when he was 32 with Lou Gehrig’s disease, and now he’s 35 and he’s totally paralyzed in a wheelchair. He speaks using eye gaze technology where he’s moving his pupils. So he’s had this huge thing to adjust to, obviously, and he wrote a memoir that’s coming out to; it’s called Eyes to the Wind, but there’s an interesting part in it where right after he gets diagnosed, he tells his best friend like, “Okay, I got to do three things. I have to do a bunch of medical stuff and try to mitigate what’s happening, I have to mourn what I thought I was going to have that I’m not going to have anymore in my life,” and then he says, “Then I have to enjoy the moment. Those are the three things I have to do.” Then he wakes up like two weeks later and says, “Oh, wait a second. I need to go back to activism. That’s my thing. That’s the purpose of my life.” Ever since then, he’s been doing a ton of activism that’s actually been even more powerful, in a way, because of his illness.
It’s interesting because I actually think he’s right. It’s like, you mitigate what you can. You mitigate suffering, you try to cope. You try to be mindful and present in the moment, and you try to build a purpose in your life. I kind of think those are the keys to coping in a lot of different situations. I think that’s what Paul was doing too, and the question is, just the whiplash of having a really upending change in your life and then in particular, trying to figure out what your purpose will be, because if you lose that, it’s really hard. I think it’s Viktor Frankl or Nietzsche or somebody, it’s like Frankl quoting Nietzsche who said something like, “He who has a ‘why’ to live can bear almost any ‘how.'” It’s kind of like Maslow’s hierarchy flipped over; it’s like if you feel a purpose and you feel connected to your sense of purpose in your life, a lot of things could be going wrong, including in your body, and you can still feel really solid. So I don’t know. I think about that a lot in my own life or with my patients, you know?
Brett McKay: This idea of living while you’re still alive, is that one of the reasons why Paul wanted to have a child even though he knew he might not see her grow up?
Lucy Kalanithi: Definitely. It was kind of a crazy decision. We had a lot of support, so we had a lot of luck, support, and privilege that made it even possible to think about doing that when he was so sick, but he said that we had a conversation actually that was really formative for me that I’ve held onto since then too where he initially wanted to have a child more than I did at that time. He was just really certain he wanted to, but he needed to make sure it would be okay for me going forward. I said, “You know, I’m actually more worried about you. Don’t you think that if we have a child, that’s going to make dying even more painful for you?” He said, “Wouldn’t it be great if it did?” That was just so … formative for me just thinking anybody who decides to have a child, they’re not doing it because they think it’s going to be easy, or climbing a mountain or going through really arduous schooling. It’s like we do so many things that are difficult and beautiful at the same time, or the difficulty is part of the beauty. I think Paul recognized that having a child, even when you’re dying, that’s what that is, you know? So that was a big part of that.
Brett McKay: That’s the other thing that runs through the book, that connection between suffering and love.
Lucy Kalanithi: Right.
Brett McKay: Right. Like the people you love, they’re the ones that cause you to suffer the most, but you’re willing to do that because you love them.
Lucy Kalanithi: Totally. It’s either part of it or it’s worth the risk, yeah.
Brett McKay: This idea of a big event happens to you like this, your priorities change and even your identity changes. For Paul, it was very visceral because he went from doctor to patient. Was that really hard for him?
Lucy Kalanithi: Yes, it was really hard. I think yes and no. I mean, the fact of being a doctor makes it way easier to handle being part of the medical system, so a lot of being a doctor was very helpful, of course, but I think Paul, A, sort of was surprised in a way by his own hubris. I think he thought he kind of knew what it was going to be like to be a patient, and then he was really shocked by how disorienting it was to face a serious illness, and he also had a lot of struggle just with the fact of feeling like an object instead of a subject. For a young neurosurgeon, you’re pretty used to being an agent pretty in charge of everything. Then, to be the one who’s the object and to be physically debilitated or just to be sitting and waiting, or to be not sure of what’s happening on a big or small scale was very hard.
Brett McKay: Was there a moment where he finally, God I don’t know, I guess the word is like “submitted?” Like he became an object and he became okay with that?
Lucy Kalanithi: Kind of. I think yes, I guess because he thought about it a lot and he got used to it, and he also forged a different kind of agency as a writer. He sort of forged agency, but at the same time, I think one thing that did help was putting words on it, like the mere act of describing it, first to himself and then as a writer, was really helpful. That was part of, initially as a young person, he thought he would be a writer and then he entered medicine so that he could have an unmediated experience of big questions, and then I think once it became so fiery and he was the one who was sick, he kind of retreated to words again, and flipping back and forth in that way was very helpful. He was gregarious but pretty introverted in a sense where self-reflection and writing was the way that he came to terms and actually processed things was kind of internal.
So when he was writing the manuscript even, I was reading it day to day or week to week, and it was kind of a conversation tool, but the manuscript was a big part of how he coped.
Brett McKay: Yeah, he was able to forge a new identity, a new purpose. I thought it was interesting the way he described it, I think it was really useful, is that it didn’t switch on from one thing to the next. It was a process that went back and forth. It wasn’t like he just knew all of a sudden,” Well now I write.” It was more of like, “Well, am I doctor? Well I was a doctor.” I think he did a great job showing that it’s a very fluid process and very messy, and it’s not very clean and one-and-done.
Lucy Kalanithi: Totally. I think that’s a great way to say it, and important. He did; he talked about verb tense, right, and he’s like, “I am a neurosurgeon, I was a neurosurgeon. I had been, I will be.” He literally could not figure out how to conjugate the verb for his own identity as a neurosurgeon, you know? Was it gone? Was it still there? If he’s not practicing, is he still a neurosurgeon? If he never will be, then does it matter? Totally.
Brett McKay: Yeah. One thing that helped throughout this is that Paul had a great oncologist that was very attuned to the human element of dealing with a terminal illness. How did she help with that?
Lucy Kalanithi: Yeah. The main thing was she just talked to him for real, like he was a real person with agency, like we had said, and she would always ask him what he was up to and what was important to him. Initially, she was the first person who told him he could return to being a neurosurgeon because, initially, we thought he would die within a few months. We actually, even as physicians, weren’t even aware of the strides in cancer science and the tolerability and efficacy of the treatment that he would end up using, so he had a great year on this one treatment. She said, “You can still be a neurosurgeon.” He looked at her like she was insane, and then he was able to. Then similarly, once he was writing, and here’s an example: she prescribed a stimulant medication, kind of similar to Ritalin but not exactly the same, so that he could focus on writing when he was so punishingly tired and was having side effects from other treatments. She just was really creative in trying to tailor the medical treatments so that he could keep being who he wanted to be as much as that was possible.
Brett McKay: So Paul did a stint, he went back to work for a while as a neurosurgeon, but essentially the disease progressed. How did he spend his last few weeks of life? You hear people when they know like, “Well, I’ve got a month. I’m going to live life to the fullest.” Is that what he tried to do or did he do something different?
Lucy Kalanithi: He did something kind of different. I mean, okay, it sort of depends. I think there’s this of, like people have this big bucket list and they’re going to try to do it and they’ll travel the world or whatever, and I think Paul did something that was kind of the opposite, which was essentially to, there’s another really interesting cancer patient writer named Kate Bowler who talked about how when she got diagnosed, she chose to double down on the life she had, which I actually think Paul did too. It was like, if you’ve made considered decisions through your whole life about what you want to do and who you want to be and what’s your career, and who are you gonna marry, if you’re happy with that and you get diagnosed with a terminal illness, it’s exciting and romantic to decide that the way you wanted to spend your long life is also the way you want to spend your short life. That’s wonderful. That’s kind of what he was doing, but I think his world became narrower and narrower.
In the very last few weeks of his life, he was at home writing, kind of furiously writing actually, knowing that he was really getting very sick. I remember a bunch of people wanted to visit, and he kind of didn’t have the energy for it, even though he really wanted to, and he ended up writing this beautiful email that was kind of this love letter to his friends, but it ultimately said like, “I love you guys, and one more class of Ardbeg 10 is not going to change that.” I think similarly, his world just became smaller because he was so sick. The very last weekend was at home writing, and then he died a little bit even sooner than we thought. I think we thought he had a few weeks left, and then he died kind of suddenly because he had stopped taking one of his cancer medications, hoping that he could participate in a clinical trial. That was just such bad luck. Then, ultimately we called 911 and he wasn’t really able to breathe comfortably at all, so we went to the hospital, which wasn’t totally ideal to be away from home, but then, our daughter’s five now and she knows this story.
The way my daughter would tell it is, “Daddy was really sick and we went to the hospital, and usually a baby is not allowed to go to a hospital, but for me, they made a special rule.” She knows about the special rule where our daughter came to the hospital too. He died in the hospital, but the thing that he really wanted in the last moments and last day was to be with our daughter, who was eight months at the time.
Brett McKay: What insights do you think Paul’s experience in his last moments can shed for people who are facing a similar situation?
Lucy Kalanithi: I’m just trying to think of what to share. I mean, I think the thing that I felt like Paul was a leader on or had deeply considered was this question of quality of life at the end of your life. He faced a medical decision actually, which was whether to go on a ventilator and whether to be on life support technology. Usually that stuff is not particularly helpful when you’re really elderly or when you’re dying of a really progressive illness like cancer at the end of your life, but I think there’s like a cultural pressure, and even some medical cultural pressure, to “do everything” and use a technology like that, or dialysis, or whatever it might be. Paul ultimately said no at the very end, that he didn’t want to use any other life extending technology. I think it’s funny how brave a decision that can be because it’s sort of an ancient wisdom, right? It’s like at a certain point, nature takes its course, but I think in a way, like in a modern medical culture, it’s sort of brave to decide not to do that. As a doctor, Paul had a sense that it wasn’t going to help.
Then, I think what ended up for him was the medical treatment was for the nurses to sneak a baby in. I think that’s one thing to think about, is really trying to make sense for you medically, and it may not be the most intensive medical treatment. It may be something else, like staying home, and-
Brett McKay: Yeah. I mean, these are-
Lucy Kalanithi: That’s one big thing, you know?
Brett McKay: Right, and it’s a very practical, sometimes boring. That’s advance directive type stuff, right?
Lucy Kalanithi: Totally.
Brett McKay: People don’t think about that, but at that moment, that’s when you’d want to have one so you can be an agent, right, in determining how your end of life is.
Lucy Kalanithi: That’s right. It’s not sexy, you know? I’m a primary care doctor, so I think that stuff is sexy, but most people don’t. Yeah, I think instead of just the pure paperwork-y part of it, it’s like if you know who you are and you know what’s important to you, like for Paul, Paul just wanted to be mentally lucid. He’s like, “I don’t want to be alive if I’m not mentally lucid. I want to write, and I want to be with my family and I want to hold my kid. If this is the end of that, then this is the end.” It made it very clear for him because he knew who he was, but it’s also really hard. It’s also … Even as doctors, it was hard to figure out, like, “Oh, is this really the moment? I guess this is it. I guess this is really the moment.” It’s just so shocking when it actually is happening, you know? Yeah, when it’s you, it’s just so, so emotionally intense.
I think for me, it’s like I was so fused with Paul. You’re such a team at that time, and I was really devoted to trying to figure out how to help him write and how to help him make medical decisions. I was sort of blocking and tackling everything the best I could, and then suddenly he dies and he just disappears. It’s like he just disappears, and it’s so shocking. It’s like, “Oh my gosh, he was here yesterday and now he just disappeared.” It’s almost incomprehensible. For anybody who’s lost somebody, I think that itself is so wildly upending.
Brett McKay: Yeah. We’ve talked to someone who works with widowers, and one thing he mentioned is that they disappear, but they’re still there. You go home-
Lucy Kalanithi: Totally.
Brett McKay: You can still smell your spouse.
Lucy Kalanithi: Totally.
Brett McKay: He says it’s so bizarre. Well let’s talk about that, the grief process that you’ve gone through. A lot of people assume that time heals all wounds and grief progresses in this linear fashion. Has that been your experience with grief?
Lucy Kalanithi: No. I mean, yes and no. I think the pain is certainly less than it was before, so it has gotten better over time, of course, but I think the linear stages of grief thing or predictable stages has not been my experience; I think it’s much more like waves of an ocean, or there’s all kinds of other metaphors that people use. I mean, I got to do a book tour for Paul after Paul died, and it was actually so amazing. Paul’s book came out nine months after he died, and right around the time where I was still so hungry to talk about him and he was still so present in my everyday thoughts. I love him no less than I did before, you know? He’s still a part of my experience, and the chance to talk about him, or even to you, you know? He died four years ago and it’s so fun to tell you about him. I’ve even fallen in love since Paul died, and I also still love Paul, and Paul’s still Katie’s dad. I think the positive experience of doing this book tour after Paul died has taught me so much about grief and how helpful it can be to acknowledge that that love totally continues and the desire to talk about the person continues.
Sheryl Sandberg, after her husband died suddenly, wrote about going to this dinner party, and everybody was telling the cute stories of how they met their spouses. Then they skipped over her. She was like, “I totally have a story about how I met Dave, and people felt weird asking about it, or maybe thought it wasn’t important anymore.” She was so shocked and was ready to tell the story, and I’ve had so much opportunity to tell the stories, and it’s been so awesome.
Then, it’s just been interesting raising a kid into a world that includes visiting a grave, you know? That’s just her world and she takes it totally in stride.
Brett McKay: She gets it.
Lucy Kalanithi: Mm-hmm.
Brett McKay: Let me go back to this idea of how other people respond who are outside of this process. I think all of us have known someone who’s going through a hard time: a spouse has a terminal illness, a friend has a terminal illness, someone loses their spouse suddenly, and people want to help. They want to say something, but they’re afraid they’re going to say the wrong thing. Going through your experience with Paul and even as your experience as a doctor, do you have any advice to folks who want to help, who know someone who’s having a hard time and they just don’t know what to do or say?
Lucy Kalanithi: Sure. I mean, my main advice is just “do the thing.” That’s everything from write the card, go to the memorial service, knock on the door, say the thing. Just do the thing if it occurs to you. It’s just os much harder to feel isolated and disconnected, and I think any time somebody reached out to me with anything, which happened a lot, felt so good. I was not analyzing what people were saying; I was just analyzing how it made me feel to be connected. I think my mom always used to give us this advice growing up when she would say, “When in doubt, describe.” It was good relationship advice; it was like, “You don’t have to have the perfect thing to say. You can just describe even that.” You could say to your friend like, “I was so sorry to hear your mom died. That hasn’t happened to me, and I don’t even really know what to say about it. I’ve just been thinking about you so much, and it brings tears to my eyes. I just wanted to come over.”
It’s like, wouldn’t that be such a nice thing to hear? I think “when in doubt, describe” is really pretty good because even if all you can say is, “I wish I knew what to say, I love you,” that’s awesome.
Brett McKay: Are there things that people shouldn’t say, like ever, right?
Lucy Kalanithi: Well-
Brett McKay: Because you don’t appreciate it or it doesn’t help?
Lucy Kalanithi: So I’m in a Facebook group that, well now it’s on this other platform called Band, but it’s called Hot Young Widows Club. It was founded by Nora McInerny, and it’s a group of all relatively young people who’ve lost their spouse or partner in their twenties or thirties. It’s awesome, it’s amazing, but the two things that people really don’t like to hear are, well the main one is, “Everything happens for a reason,” or like, “He’s in a better place.” Anything that feels like it’s trying to explain something away or anything that’s trying to explain it, because I think these things just are pretty inexplicable, and oftentimes what you want is just someone to acknowledge how hard it is, and see it and sit there, rather than trying to make it better or fix it, especially when that’s impossible.
Brett McKay: What have you noticed or has been helpful or that you’ve appreciated in the months or years since Paul’s death? I mean, one thing I’ve talked to people who’ve lost a spouse, people remember you right after, but then after a while the phone calls start going away. Did you have people who kept in constant touch with you, even months after it?
Lucy Kalanithi: Yes. Yeah, totally, and I think maybe my friends just knew that intuitively, or maybe it also really came out of Paul’s book because there was enough to talk about with the book and the book tour, and, “How’s the book doing?” Paul and the book became really wrapped together, and so the degree to which I’ve had the chance to talk about Paul’s writing feels totally commensurate with the need I have to talk about Paul, and I think that’s not true for everybody. So I think you’re really hitting on something. I have a friend whose son died about a year after Paul died, and I marked the calendar for the day of the month that he died to send her a text every once in a while. He would’ve been starting kindergarten now, and she just mentioned that two people texted her to say like, “Hey, I see there’s all the kindergarten photos on Facebook. Just checking in with you because I know that your son would’ve been starting kindergarten.” It totally doesn’t go away. You think about the person at big milestones or the anniversary that they died on, or their birthday. It’s like, if it would every occur to you to mark your calendar to check in with someone, I can almost guarantee that that person is thinking about it, and it feels awesome to even just get a text. You’re totally right.
Brett McKay: So Paul was a philosopher. That’s what I think. He was, I think, a philosopher first and then he became a doctor. He’s sort of like William James. William James was probably a philosopher who became a psychologist because he wanted to understand things better-
Lucy Kalanithi: Love it.
Brett McKay: But Montaigne, the French essayist, he said, “The study of philosophy is to learn to die well.” Do you think Paul succeeded in that?
Lucy Kalanithi: Oh. I think so. I mean, I think he really faced up to it and he really tried to live authentically. I think in a way, I don’t know what a “good death” means or “dying well” means; it’s not something that we want to do, but I think dying well, to me, is pretty similar to living well, you know? It’s like until you die, you’re alive. It’s all your life, you know? So yeah, I mean I think so. I’m proud of him for that, so I guess yes.
Brett McKay: Do you think that he got some of the answers to those questions you’ve had since he was a young man in the Arizona desert? Like he got an idea of what made human life meaningful?
Lucy Kalanithi: Are you asking me what’s the meaning of life?
Brett McKay: No. Maybe he couldn’t articulate it, but do you think he had a sense, like he grasped it?
Lucy Kalanithi: Yeah, I do, I do. After Paul died, one of his friends said, “You know, I wonder if Paul felt the struggle to find meaning is part of the meaning.” I kind of do think that. I think When Breath Becomes Air is about what you mentioned: it’s about love and suffering and striving. Those are the things that Viktor Frankl said were meaningful. Those are the things he . . . it’s like love and the people, and experiences we love, work, like our work or our purpose, and then suffering and how facing suffering is intrinsically meaningful sort of counterintuitively, right? I think love and striving and suffering were in service, you know? I think were really meaningful to Paul, and they kind of swirl around in the book, but I picture Katie growing up to read the book, and I think when she reads it, I hope that it’s essentially saying, “It’s important to try hard, and I love you.” That’s what the book saying to Katie, I think, and I kind of think that’s indistinct from ultimately what Paul thought was really important in his life.
Brett McKay: Well Lucy, this has been a great conversation. Is there some place people can go to learn more about the book?
Lucy Kalanithi: Well, let me think. So it’s When Breath Becomes Air. It’s wherever books are sold. There is a website called paulkalanathi.com that has some old interviews with Paul and then some speaking events and other projects that I’m doing, and then I’m on Twitter if anybody wants to communicate with me. I’m @rocketgirlmd on Twitter.
Brett McKay: Awesome. Well Lucy Kalanathi, thanks so much for your time. It’s been a pleasure.
Lucy Kalanithi: Thank you so much.
Brett McKay: My guest today was Lucy Kalanathi. She wrote the epilogue to her late husband’s book. His name was Paul Kalanathi. That book is When Breath Becomes Air. It’s available on Amazon.com and bookstores everywhere. You can find out more information about Paul and his work at paulkalanathi.com. Also, check out our show notes at aom.is/breathbecomesair where you can find links to resources and where you delve deeper into this topic.
Well that wraps up another edition of the AoM podcast. Check out our website at artofmanliness.com where you can find our podcast archives. There’s over 500 episodes there as well as thousands of articles written over the years on personal finance, physical fitness, how to be a better husband, better father. If you’d like to enjoy new episodes of the Art of Manliness podcast ad-free, you can do so on Stitcher Premium. Head over to stitcherpremium.com, use code “manliness” for a month trial for free. Once you’re signed up, download the Stitcher app on the Android or iOS and start enjoying ad-free episodes of the Art of Manliness podcast. If you haven’t done so already, I’d appreciate it if you take one minute to give us a review on iTunes or Stitcher. It helps out a lot, and if you’ve done that already, thank you. Please consider sharing the show with a friend or family member who you think can get something out of it. As always, thank you for the continued support. Until next time, this is Brett McKay, reminding you to not only listen to the AoM podcast, but put what you’ve heard to action.