‘I love Paul forever’

The late Paul Kalanithi’s memoir, When Breath Becomes Air, has been heralded as an unforgettable piece of literature. Shortly after learning he had stage 4 lung cancer and the reality of the prognosis set in, the Stanford neurosurgeon began writing about his walk toward death. The book is written with humor, grace and searing honesty.

Shepherded to posthumous publication by his physician wife, Stanford internist Lucy Kalanithi, and released in 2016, the memoir has been stamped as monumental and stirring. One critic wrote, “It’s a story so remarkable, so stunning and so affecting that I had to take dozens of breaks just to compose myself enough to get through it.”

It spent 68 weeks on the New York Times bestseller list and has been translated into 39 languages.

It’s been five years since Paul Kalanithi’s death. Lucy Kalanithi and daughter Cady, now 5, have moved to a new home. Kalanithi fell in love again. But they still visit Paul’s grave, nestled at the edge of a field in the Santa Cruz Mountains.

The setting is majestic, with a view of the Pacific Ocean just a few miles away. They picnic, bring flowers and, as Kalanithi wrote in the epilogue to When Breath Becomes Air, she rubs the grass “as if it were Paul’s hair.”

“Paul’s decision to look death in the eye was a testament to not just who he was in the final hours of his life but who he had always been,” she wrote in the epilogue. “For much of his life, Paul wondered about death — and whether he could face it with integrity. In the end, the answer was yes. I was his wife and a witness.”

Kalanithi continues to speak publicly about their family’s legacy, including a recent conversation with contributing editor Paul Costello at the San Mateo Public Library. They spoke about some of her memories of life after her husband’s diagnosis and what it means to move on after the death of a loved one. This Q&A is based on that conversation.

Costello: Now, a few years after Paul’s death, what’s it like to read his words from the book at public events?

Kalanithi: It’s really nice to read it for a lot of reasons. I love hearing Paul’s words. … It makes me feel connected to him; I’m participating in part of what we have been doing together. I’m proud of him.

Costello: Recently, Britain’s Prince Harry was talking about the death of his mother, Princess Diana, and he said grief is “a wound that festers.” Does that ring true to you?

Kalanithi: Did he really say that? That’s so sweet and sad. … I don’t think of it as a metaphor like that, partly because as a doctor I’m like, “Well, if a wound festers, it’s really untended.” I agree with the part of it that’s implying it’s not just going to close up and then be this neat little scar. There’s a wound. But my experience of grief has changed over time.

Costello: How so?

Kalanithi: In that first year, there was a sadness and loneliness and anxiety that I didn’t expect. Doing a book tour for Paul was extremely helpful because people asked me about him a lot. Instead of treating me with kid gloves, people would just walk up and say, “I read your husband’s book. Here’s what I think.” It was this real entree into feeling less alone. Now, I feel like that pain has lifted a lot, but I love Paul exactly the same amount. So to me, the love feels very salient.

Costello: When you discovered Paul was seriously ill, you must have had two reactions. One as a wife and another as a physician.

Kalanithi: He logged into a hospital computer. It was very clear on the CT scan. Suddenly, all these symptoms were explained. It was like standing between the past and the future. It was very, very clear that we were looking at an incurable disease. It was really disorienting. Then there was the challenge of facing your mortality. Paul wrote, “The future I imagined evaporated.” I think we talked in bullet points. Paul said, “I don’t want to die.” We would whisper things to each other at night for a while.

Costello: In all of that intensity, how did you decide to have a child?

Kalanithi: It seemed pretty crazy to do that. Paul was more sure than I was that he wanted to have a child. I said, “It’s going to make it really hard. You’re really sick. I worry that having to face dying and having a new baby who you need to say goodbye to is going to make it really hard. What do you think about that?” He said, “Wouldn’t it be great if it did make it really hard?” It was such a lovely statement of what our lives are about. Sometimes you cannot have joy without risking pain. 

Costello: How did you handle having an infant on one hand and a dying husband on the other — both with significant needs?

Kalanithi: I found, when Paul was sick and in some ways with being a mother, this ferocity of love. In a way, I felt invincible because of love, like, “Whatever happens, it’ll be OK.” I used to think of life as a path — it’s going somewhere and you walk on it. Or life is a mountain and you’re going to climb it to the top. Now I think life is a series of moments. When Paul was sick, I could see it as a moment. Same with Cady being a baby. I was like, “This person needs me and this person needs me, and that’s what I’m doing right now.”

“In that first year, there was a sadness and loneliness and anxiety that I didn’t expect. Doing a book tour for Paul was extremely helpful because people asked me about him a lot. … It was this real entree into feeling less alone.”

Costello: You’ve said Paul didn’t die until he died. What do you mean by that?

Kalanithi: I was talking about watching Paul wrestle with his mortality and try to figure out how to shape an identity. There was just so much messy intellectual and existential work that he was doing even as his body was declining, betraying him and collapsing. There was a striking contrast for me. His body was dying, but his sense of self, intellect or engagement wasn’t. Being able to be a writer after needing to stop being a surgeon was a huge part of that. I think it’s Nietzsche who said, “He who has a why to live can bear almost any how.” He felt this immense sense of reshaped purpose and was able to tolerate a fair amount of suffering, physically, because of pursuing his purpose.

Costello: You wrote a column for the New York Times entitled, “My marriage didn’t end when I became a widow.” What did you want to say?

Kalanithi: I love Paul forever. He’s my family forever. I read C.S. Lewis’ A Grief Observed, where he wrote, “Bereavement is not the truncation of married love but one of its regular phases.” I thought it was beautiful. There is someone left in a marriage, even after someone dies, like that is a phase of your marriage. I really related to it.

Costello: What do you want your daughter to know about her dad?

Kalanithi: Paul didn’t leave her a letter or any other message directly to her, apart from the book. To me, within the book, he talks about what he thinks is meaningful. He talks about the importance of striving. He talks about the challenge of facing mortality. Then he says “I love you” at the end. I think that’s a pretty decent message to impart as a parent. It’s like, “I want you to be a good person. I want you to try hard, and I love you.” … It’s very nice to have this solid thing that she can find.

Costello: In the final days of Paul’s life, what was most important to him? What was most important to you?

Kalanithi: People dying often have one North Star. For Paul, it was to be mentally lucid. That helped us with the decision-making, too, in the hospital. He had to make this decision of whether to be intubated on a ventilator machine, a breathing machine. Both being doctors, we knew for a patient like him, it likely wouldn’t help and he’d probably stay sedated or stay in a coma, not really able to breathe on his own or go home or wake up. Then he decided not to do it, which was really brave and hard. Even as a doctor, it was really, really hard. His desire to be lucid was so clear to him, so clear to me, it helped make that decision.

Costello: What did you learn about yourself in the final moments preparing for death?

Kalanithi: For Paul, the upending moment was diagnosis. For me, the upending moment was Paul dying, which may be sort of obvious. I think I was so surprised, for lack of a better word. Even though I wasn’t surprised by the fact of it, it was very hard to walk out of the hospital. I could barely move my legs walking out of the hospital. I think the idea of holding two things, holding joy and holding pain at the same time has been prominent for the past few years for me.

Costello: After you lose a loved one, at some point you’ll have to go through a closet and take out clothes. You’ll have to go through objects and put them away. How did you decide when that was appropriate?

Kalanithi: I just sort of realized when I woke up one day that maybe today’s the day. For six months, Paul had his shoes on the floor, a bookshelf with his books on it, a toothbrush. It felt like there really wasn’t a hurry. I was like, “These are still here. Right now, that feels really good. Maybe someday it won’t, so if they start feeling like they shouldn’t be there, then I’ll put them somewhere.” Six months later, I started to do that.

About a year after Paul died, my sister remodeled my whole apartment. I never would have wanted to do it sooner. Then once it was done, I was like, “This feels so fresh, and I suddenly feel fresh.” It’s the kind of thing where you just have to trust your instinct.