"The version of Paul I miss most, more even than the robust, dazzling version with whom I first fell in love, is the beautiful, focused man he was in his last year" - Lucy Kalanithi
"I was drawn to him because he was deeply intellectual and kind but also funny and irreverant. Paul was one of the most "alive" people I'd ever met" - Lucy Kalanithi
"Every patient facing terminal illness will have a list of goals. But when they face the reality that they may not live long enough to fulfil those goals, many of them are forced to change their priorities" - Dr Anil Paleri, director of the Institute of Palliative Medicine, Kozhikode, Kerala
"I always make a decision based on whether I'd do the operation if it was a family member of mine. You have to give a patient dignity of life and dignity of death" - Dr Gaurav Gupta, director of endovascular and cerebrovascular neurosurgery at Rutgers-Robert Wood Johnson Medical School in the US
"I asked him, 'Don't you think saying goodbye to your child will make death more painful?' He answered me by saying, 'Wouldn't it be great if it did?'" - Lucy Kalanithi
Dr Paul Kalanithi was born in New York to Indian parents and moved to Arizona when he was 10 years old. He became a neurosurgeon and writer, holding degrees in English literature, human biology, and history and philosophy of science and medicine from Stanford and Cambridge universities before graduating from Yale School of Medicine. In 2013, Kalanithi was diagnosed with stage IV lung cancer. He passed away in March 2015.
These are the broad brushstrokes of his life, the milestones that one crosses to assume an identity. But what made him special? Was it the humour? The nights he sang American Pie beneath the window of the captain of the cheerleading team in high school? Was it the relentless search for meaning in life? He chose twin paths—literature and neuroscience—to make sense of the world. “Literature provided a rich account of human meaning; the brain, then, was the machinery that somehow enabled it,” he writes in his book When Breath Becomes Air. Or was it the integrity with which he faced his own mortality? “Paul faced each stage of his illness with grace—not with bravado or a misguided faith that he would “overcome” or “beat” cancer but with an authenticity that allowed him to grieve the loss of the future he had planned and forge a new one,” writes his wife, Lucy Kalanithi, in the epilogue of the book.
What made him special? Perhaps it was all of it and perhaps it was none of it. And perhaps it is irrelevant. What is important is not who he was but what he had to say. His words are an intimate portrayal of death. He traversed a path that all of us will one day. But he left a trail that will point us in the direction of where we are headed. And how to get there with poise and dignity.
In many ways, When Breath Becomes Air is a journey in search of a destination. That journey began when Kalanithi was inundated with books in his childhood—The Count of Monte Cristo, Edgar Allan Poe, Robinson Crusoe, Ivanhoe, The Last of the Mohicans, Dickens, Twain, Austen—that instilled in him a deep love for language. But literature didn’t provide the answers that he was looking for in life. He had a deep yearning to find out where “biology, morality, literature and philosophy intersected”. One day, walking home from a football match, he let his mind wander and that’s when he got an epiphany: set aside the books and practise medicine. After a one-year programme at Cambridge, he applied and was accepted into Yale’s medical school.
Although it was in search of humanity’s deepest secrets that he chose to study medicine, in many ways, humanity itself eluded him. On his first day in the anatomy lab, he talks of objectifying the dead, reducing them to organs, tissues, nerves and muscles. “Anatomy lab, in the end, becomes less a violation of the sacred and more something that interferes with happy hour, and that realisation discomfits,” he writes. “In our rare reflective moments, we were all silently apologising to our cadavers, not because we sensed the transgression but because we did not.”
This was also the time when he met Lucy, another medical student at Yale. “We first met in 2003,” Lucy told THE WEEK in an email interview. “I was drawn to him because he was deeply intellectual and kind but also funny and irreverent. Paul was one of the most "alive" people I'd ever met. He was thoughtful, incredibly compassionate and also hilariously funny.”
He decided to specialise in neurosurgery because neurosurgeons, he says, work in the crucible of identity. “Every operation on the brain is, by necessity, a manipulation of the substance of our selves.” What kind of life is worth living? Would you trade your ability to talk for a few extra months of mute life? Your right hand’s function to stop seizures?
“I always make a decision based on whether I’d do the operation if it was a family member of mine,” says Dr Gaurav Gupta, director of endovascular and cerebrovascular neurosurgery at Rutgers-Robert Wood Johnson Medical School in the US. “Over time, as you become mature, you are able to separate your emotions and just do what is right. You have to give a patient dignity of life and dignity of death. There is a saying that if you have a hammer in your hand, everything looks like a nail. You can’t do a surgery just because you have the tool. To be a good neurosurgeon, you first have to be a good human being.”
It was while doing his residency at Stanford that Kalanithi realised something: he was becoming too clinical, keeping his emotions at bay and losing his ability to empathise with his patients. He says he was not yet with patients in their pivotal moments, he was merely at those pivotal moments.
Once, Kalanithi heard of a friend from medical school who had been hit by a car and a neurosurgeon had performed an operation to try and save her. She’d coded, was revived, and then died the following day. And that’s when he regained all his occasions of failed sympathy. “The people whose suffering I saw, noted, and neatly packaged into various diagnoses, the significance of which I failed to recognise—they all returned, vengeful, angry, and inexorable,” he writes.
While attending the Yale School of Medicine, Kalanithi was deeply influenced by a book called How We Die by Shep Nuland. In it, Nuland quotes Sir Thomas Browne’s Religio Medici: “With what strife and pains we come into the world we know not, but ‘tis commonly no easy matter to get out of it.” At the time, Kalanithi probably didn’t realise the full implication of those words or how soon they would be applicable to him.
In Kalanithi’s sixth year of residency, he started getting severe back pain. In May 2013, he was diagnosed with stage IV lung cancer. The news shattered him. The knowledge of his own mortality, he says, changed everything and nothing. Before, he knew he was going to die but he didn’t know when. After, the fact remained unchanged. But now he knew it more acutely. “The fact of death is unsettling,” he writes. “Yet there is no other way to live.”
“I knew the instant he was diagnosed that, barring a major medical advancement in the very near term, I would lose him,” says Lucy. “Being doctors, we knew that bad things could happen, so one of our first thoughts was that it was now our turn to face what we had seen so many of our patients face. At the same time, my heart broke into a million pieces. I knew the prognosis. I knew how much we would need each other, that we would make his life as long and as meaningful as possible.”
His cancer responded to treatment. He returned to work in late 2013 and completed his residency. He began reading furiously. “Paul's cancer diagnosis brought reading back into his life in full force,” says Lucy. “On the day he was diagnosed with cancer, Paul brought three books with him to the hospital—Mere Christianity by C.S. Lewis, Being and Time by Heidegger, and Cancer Ward by Solzhenitsyn. He had been a busy neurosurgeon without time to read, but when he was faced with this diagnosis, he needed books.”
“Every patient facing terminal illness will have a list of goals,” says Dr Anil Paleri, director of the Institute of Palliative Medicine in Kozhikode, Kerala. “But when they face the reality that they might not live long enough to fulfil those goals, many of them are forced to change their priorities. I have known people who have spent their last days travelling with their families, marrying their children off, meeting old friends, forgiving those with whom they had issues or going on a pilgrimage. Many become very reclusive. I know one well-known personality who just refused to meet friends and spent his last days observing the view from the window of his room.”
Kalanithi’s daughter, Elizabeth Acadia “Cady” Kalanithi, was born on July 4, 2014. “We thought very hard about our decision to have a baby despite the fact that Paul had terminal cancer,” says Lucy. “I asked him, ‘Don't you think saying goodbye to your child will make your death more painful?’ He answered me by saying, ‘Wouldn't it be great if it did?’ He meant that life is not about avoiding suffering but about creating meaning, and I felt the same way. And we asked ourselves the questions, ‘Is having a child meaningful to us? Do we want to add a seat to our extended family's table? Can we provide this child a good life?’ And we could both still say yes, despite the fact that Paul was dying. Our trust in each other and in our large supportive community made us feel ready to do it.”
But then, time sped up. One day, in early 2015, Lucy found him burning with fever. When his condition worsened and he was wheeled into the emergency room on a gurney, he whispered to Lucy: “This might be how it ends.”
“I’m here with you,” she replied.
They found out that his blood carbon dioxide level was critically high. Throughout the night, he discussed the question of whether he should be intubated with his physicians, his family and Lucy. “Even if I make it through this,” he said, “I’m not sure I see a future that includes meaningful time.”
The next morning, he asked for his daughter. Cady lay nestled in the crook of Kalanithi’s right arm, unbothered by the BiPAP machine that was keeping him alive. A while later, he told Lucy, his voice soft but unwavering. “I’m ready.”
Ready to remove the breathing support. Ready to let go. Ready to die.
There were many things that were frustrating about terminal illness. There was the frustration of not knowing how much time you have left. “If I had some sense of how much time I have left, it’d be easier,” writes Kalanithi. “If I had two years, I’d write. If I had 10, I’d get back to surgery and science.”
“Nobody can predict how long a patient will live,” says Dr Brindha Sitaram, consultant psycho-oncologist at HCG cancer care centre, Bengaluru. “When patients ask me how much time they have left I ask them why they want to know. They’ll give me a host of reasons. For example, if they say they want to fix their daughter’s marriage, I’ll tell them to go ahead and fix it. They don’t necessarily need to know how much time they have left to fulfil their end-of-life goals.”
Then there was the frustration of losing your identity and merely becoming an object on which things are done. Outside his oncologist’s office, Kalanithi didn’t know who he was. Because he wasn’t working, he says, he didn’t feel like himself-—a neurosurgeon, a scientist with a bright future spread before him. “Debilitated, at home, I feared I wasn’t much of a husband for Lucy,” he writes. “I had passed from the subject to the direct object of every sentence in my life.” But even in this helpless state, he was concerned about the wellbeing of his family after his death. “One of the first things Paul said on being diagnosed was that I should remarry,” says Lucy. “That was so astounding—he had just received the worst news of his life and he was already thinking about how it would affect me. It's been a little over a year since he died, and I'm not yet contemplating marrying again, but even if I do, I know I'll love Paul for my whole life.”
Then there were the constantly changing values. One moment, you felt like working as a neurosurgeon for the rest of your life. The next, you wanted to learn to play the saxophone or devote yourself to the church. How do you make sense of this emotional cauldron? How do you keep from sinking into the quicksand? Kalanithi did it beautifully. He worked relentlessly on the book. When his fingertips developed painful fissures because of chemotherapy, he used seamless, silver-lined gloves to type out the words on his laptop.
“He wrote the book as a journal of sorts but also with a real purpose—to bring the reader into what it was like to face mortality directly as both a physician and a terminally-ill man,” says Lucy.
More than the fortitude with which he faced the disease, it was the grace with which he accepted it that shines through in the book. “The version of Paul I miss most, more even than the robust, dazzling version with whom I first fell in love, is the beautiful, focused man he was in his last year, the Paul who wrote this book—frail but never weak,” writes Lucy in the epilogue.
“Acceptance among patients varies,” says Dr Jame Abraham, director of breast oncology programme at Taussig Cancer Institute, Cleveland Clinic in Ohio in the US. “Some patients accept it easily and others take a long difficult path. As doctors, we help them come to terms with the fact through constant communication to understand the goals, dreams and aspirations of the person we’re dealing with.”
What did he hope to accomplish through the book? “The thing about lung cancer is that it’s not exotic,” Kalanithi wrote in an email to a friend. “It’s just tragic enough and just imaginable enough. [The reader] can get into these shoes, walk a bit, and say, ‘So that’s what it looks like from here… sooner or later I’ll be back here in my own shoes’. That’s what I’m aiming for I think. Not the sensationalism of dying, and not the exhortations to gather rosebuds, but: Here’s what lies up ahead on the road.”
There is the legend of the thorn bird that sings even while it dies. Colleen McCullough, in her book, describes it as “one superlative song, existence the price. But the whole world stills to listen, and God in his Heaven smiles.” His life was a melody in search of a song. In the end, I’d like to believe he found it.
Excerpts from the book
At age thirty-six, I had reached the mountaintop; I could see the Promised Land, from Gilead to Jericho to the Mediterranean Sea. I could see a nice catamaran on that sea that Lucy, our hypothetical children, and I would take out on weekends. I could see the tension in my back unwinding as my work schedule eased and life became more manageable. I could see myself finally becoming the husband I'd promised to be.
Then, a few weeks later, I began having bouts of severe chest pain. Had I bumped into something at work? Cracked a rib somehow? Some nights, I'd wake up on soaked sheets, dripping sweat. My weight began dropping again, more rapidly, now, from 175 to 145 pounds. I developed a persistent cough.
Little doubt remained. One Saturday afternoon, Lucy and I were lying in the sun in Dolores Park in San Francisco, waiting to meet her sister. She glimpsed my phone screen, which displayed medical database search results: "frequency of cancers in thirty- to forty-year-olds.”
"What?" she said. "I didn't realize you were actually worried about this."
I didn't respond. I didn't know what to say.
"Do you want to tell me about it?" she asked.
She was upset because she had been worried about it, too. She was upset because I wasn't talking to her about it. She was upset because I'd promised her one life, and given her another.
"Can you please tell me why you aren't confiding in me?" She asked.
I turned off my phone. "Let's get some ice cream," I said.
Yet there is dynamism in our house.
Day to day, week to week, Cady blossoms: a first grasp, a first smile, a first laugh. Her pediatrician regularly records her growth on charts, tick marks indicating her progress over time. A brightening newness surrounds her. As she sits in my lap smiling, enthralled by my tuneless singing, an incandescence lights the room.
Time for me is now double-edged: every day brings me further from the low of my last relapse but closer to the next recurrence—and, eventually, death. Perhaps later than I think, but certainly sooner than I desire. There are, I imagine, two responses to that realization. The most obvious might be an impulse to frantic activity: to "live life to its fullest," to travel, to dine, to achieve a host of neglected ambitions.
Part of the cruelty of cancer, though, is not only that it limits your time; it also limits your energy, vastly reducing the amount you can squeeze into a day. It is a tired hare who now races. And even if I had the energy, I prefer a more tortoiselike approach. 1 plod, I ponder. Some days, I simply persist.
Everyone succumbs to finitude. I suspect I am not the only one who reaches this pluperfect state. Most ambitions are either achieved or abandoned: either way, they belong to the past. The future, instead of the ladder toward the goals of life flattens out into a perpetual present. Money, status, all the vanities the preacher of Ecclesiastes described hold so little interest: a chasing after wind, indeed.
Yet one thing cannot be robbed of her futurity: our daughter Cady. I hope I'll live long enough that she has some memory of me. Words have a longevity I do not. I had thought I could leave her a series of letters—but what would they say?
I don't know what this girl will be like when she is fifteen: I don't even know if she'll take to the nickname we've given her. There is perhaps only one thing to say to this infant, who is all future, overlapping briefly with me, whose life, barring the improbable, is all but past.
That message is simple:
When you come to one of the many moments in life where you must give an account of yourself, provide a ledger of what you have been, and done, and meant to the world, do not, I pray, discount that you filled a dying man's days with a sated joy, a joy unknown to me in all my prior years, a joy that does not hunger for more and more but rests, satisfied. In this time, right now, that is an enormous thing.
Excerpted with permission from Penguin Random House.
When Breath Becomes Air
By Paul Kalanithi
Published by Penguin Random House
Price Rs 599