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When Breath Becomes Air — A Visit From the Author’s Widow

July 13, 2016
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In better days, before his death, surgeon Paul Kalanithi and his wife, Lucy, an internist.

Lucy Kalanithi, widow of Paul Kalanithi, author of The New York Times No. 1 Bestseller “When Breath Becomes Air”, attended a palliative care conference in Philadelphia recently. I went to hear her speak.

Her husband was just finishing ten years of medical training — four years of medical school and six years of residency — when diagnosed with what would be terminal lung cancer. Literally as he was dying, he was writing, looking at death in American head on, recalibrating what it means to be a doctor and a patient, sharing his experience with eloquence, passion, poignancy. It was an amazing book. She had to finish it.

Here’s just one paragraph, which Lucy read at the conference:

“I received the plastic arm bracelet all patients wear, put on the familiar light blue hospital gown, walked past the nurses I knew by name, and was checked into a room — the same room where I had seen hundreds of patients over the years. In this room, I had sat with patients and explained terminal diagnoses and complex operations; in this room, I had congratulated patients on being cured of a disease and seen their happiness at being returned to their lives; in this room, I had pronounced patients dead. I had sat in the chairs, washed my hands in the sink, scrawled instructions on the marker board, changed the calendar. I had even, in moments of utter exhaustion, longed to lie down in this bed and sleep. Now I lay there, wide awake. A young nurse, one I hadn’t met, poked her head in. `The doctor will be in soon.’ And with that, the future I had imagined, the one just about to be realized, the culmination of decades of striving, evaporated.”

Paul Kalanithi had chosen neurosurgery because he felt this was the perfect intersection of life, death and meaning, and he was fascinated with the question, “What makes life meaningful enough to go on living?” And now, shockingly, he was discovering this first hand.

Later in the book, he writes: “As a doctor, I had had some sense of what patients with life-changing illnesses faced — and it was exactly these moments I had wanted to explore with them. Shouldn’t terminal illness, then, be the perfect gift to that young man who had wanted to understand death? What better way to understand it than to live it? But I’d had no idea how hard it would be…”

At another point he wrote, simply, “How little do doctors understand the hell through which we put patients.”

On unbearable days, days of excruciating pain, he would repeat seven words from Samuel Beckett: “I can’t go on. I’ll go on.”

I asked Lucy, a general internist herself, who met her husband in medical school, about her husband’s decision to write the book, and whether he had any idea it would be so successful. I also wanted to know her thoughts on why it vaulted to the top of the best seller list.

He got a bachelors and masters at Stanford in literature, she said, and had always talked about being a physician-scientist and then writing in retirement. The terminal diagnosis changed that. “This is my retirement,” he told her. As he began his treatments, he wrote an essay, titled “How Long Have I Got Left?”. It was about how you decide how to spend your time when your days are numbered. He sent it to two friends to review.

One friend, Lucy said, replied this way: “You buried the lead and this is about three different things and it’s not very funny and here’s what I think you should change.” The other friend replied: “I forwarded it to the op-ed desk at The New York Times.”

It was published and received a huge response. Agents called. There was a “little bidding war,” she said. Random House bought it, and an editor after reading part of the manuscript told him, “We intend to publish this as a New York Times bestseller.”

“It was wonderful that they wrote that to Paul,” she said. “He was totally over the moon.” In fact, she added, a friend came to visit, and told Lucy on the way out, “Paul seems kind of cocky about his book.” The auditorium erupted in laughter when she said this. Lucy said she was so pleased her husband had a sense of how successful the book would be.

The act of writing was so valuable to him on many levels. It was partly a journal, she said, and “he wrote things more intimate than he could say out loud,” which was “helpful to our relationship in real time,” she said.

Writing the book also extended his life into the future. “It made him feel very purposeful to be contributing something that came out of his personal experience and his love for literature and being a physician,” she said. Too often, she added, in fighting a terrible or terminal illness “you stop feeling useful and connected and this helped.”

She said her husband “would be so gratified” over the success of the book. It shows that “we’re hungry to talk about and address dying in a real way, sort of look directly at it… It’s really meaningful for me that it’s part of our conversation about death.”

I found the book so powerful. A must read for people who are interested in the human side of medicine. There is a tenderness here, an honesty, and an immediacy that make for compelling reading.

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Originally published at medium.com on July 13, 2016.

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Michael Vitez, winner of the 1997 Pulitzer Prize for Explanatory Journalism at The Philadelphia Inquirer, is the director of narrative medicine at the Lewis Katz School of Medicine at Temple University. Michael.vitez@temple.edu