When Breath Becomes Air

by Paul Kalanithi

I knew medicine only by its absence—specifically, the absence of a father growing up, one who went to work before dawn and returned in the dark to a plate of reheated dinner.

Nabokov, for his awareness of how our suffering can make us callous to the obvious suffering of another.

Conrad, for his hypertuned sense of how miscommunication between people can so profoundly impact their lives.

Literature not only illuminated another’s experience, it provided, I believed, the richest ma...

all disciplines as creating a vocabulary, a set of tools for understanding human life in a particular way.

Even working on the dead, with their faces covered, their names a mystery, you find that their humanity pops up at you—in opening my cadaver’s stomach, I found two undigested morphine pills, meaning that he had died in pain, perhaps alone and fumbling with the cap of a pill bottle.

In anatomy lab, we objectified the dead, literally reducing them to organs, tissues, nerves, muscles. On that first day, you simply could not deny the humanity of the corpse. But by the time you’d skinned the limbs, sliced through inconvenient muscles, pulled out the lungs, cut open the heart, and removed a lobe of the liver, it was hard to recognize this pile of tissue as human. Anatomy lab, in the end, becomes less a violation of the sacred and more something that interferes with happy hour, and that realization discomfits. In our rare reflective moments, we were all silently apologizing to our cadavers, not because we sensed the transgression but because we did not.

Doctors invade the body in every way imaginable. They see people at their most vulnerable, their most scared, their most private. They escort them into the world, and then back out. Seeing the body as matter and mechanism is the flip side to easing the most profound human suffering. By the same token, the most profound human suffering becomes a mere pedagogical tool.

Knowing you need to be judicious when pulling on the head to facilitate delivery of the shoulder is not the same as doing it. What if I pulled too hard? (Irreversible nerve injury, my brain shouted.)

“Most mothers with stillborns still have to go through labor and deliver. Can you imagine? At least these guys had a chance.”

A match flickers but does not light. The mother’s wailing in room 543, the searing red rims of the father’s lower eyelids, tears silently streaking his face: this flip side of joy, the unbearable, unjust, unexpected presence of death…What possible sense could be made, what words were there for comfort?

And as I sat there, I realized that the questions intersecting life, death, and meaning, questions that all people face at some point, usually arise in a medical context. In the actual situations where one encounters these questions, it becomes a necessarily philosophical and biological exercise. Humans are organisms, subject to physical laws, including, alas, the one that says entropy always increases. Diseases are molecules misbehaving; the basic requirement of life is metabolism, and death its cessation.

While all doctors treat diseases, neurosurgeons work in the crucible of identity: every operation on the brain is, by necessity, a manipulation of the substance of our selves, and every conversation with a patient undergoing brain surgery cannot help but confront this fact. In addition, to the patient and family, the brain surgery is usually the most dramatic event they have ever faced and, as such, has the impact of any major life event. At those critical junctures, the question is not simply whether to live or die but what kind of life is worth living. Would you trade your ability—or your mother’s—to talk for a few extra months of mute life? The expansion of your visual blind spot in exchange for eliminating the small possibility of a fatal brain hemorrhage? Your right hand’s function to stop seizures? How much neurologic suffering would you let your child endure before saying that death is preferable? Because the brain mediates our experience of the world, any neurosurgical problem forces a patient and family, ideally with a doctor as a guide, to answer this question: What makes life meaningful enough to go on living?

At moments, the weight of it all became palpable. It was in the air, the stress and misery. Normally, you breathed it in, without noticing it. But some days, like a humid muggy day, it had a suffocating weight of its own. Some days, this is how it felt when I was in the hospital: trapped in an endless jungle summer, wet with sweat, the rain of tears of the families of the dying pouring down.

The twilight existence of unconscious metabolism becomes an unbearable burden, usually left to an institution, where the family, unable to attain closure, visits with increasing rarity, until the inevitable fatal bedsore or pneumonia sets in.

But in residency, something else was gradually unfolding. In the midst of this endless barrage of head injuries, I began to suspect that being so close to the fiery light of such moments only blinded me to their nature, like trying to learn astronomy by staring directly at the sun. I was not yet with patients in their pivotal moments, I was merely at those pivotal moments. I observed a lot of suffering; worse, I became inured to it. Drowning, even in blood, one adapts, learns to float, to swim, even to enjoy life, bonding with the nurses, doctors, and others who are clinging to the same raft, caught in the same tide.

Nobody has it coming.

As a resident, my highest ideal was not saving lives—everyone dies eventually—but guiding a patient or family to an understanding of death or illness. When a patient comes in with a fatal head bleed, that first conversation with a neurosurgeon may forever color how the family remembers the death, from a peaceful letting go (“Maybe it was his time”) to an open sore of regret (“Those doctors didn’t listen! They didn’t even try to save him!”). When there’s no place for the scalpel, words are the surgeon’s only tool.

For amid that unique suffering invoked by severe brain damage, the suffering often felt more by families than by patients, it is not merely the physicians who do not see the full significance. The families who gather around their beloved—their beloved whose sheared heads contained battered brains—do not usually recognize the full significance, either. They see the past, the accumulation of memories, the freshly felt love, all represented by the body before them. I see the possible futures, the breathing machines connected through a surgical opening in the neck, the pasty liquid dripping in through a hole in the belly, the possible long, painful, and only partial recovery—or, sometimes more likely, no return at all of the person they remember. In these moments, I acted not, as I most often did, as death’s enemy, but as its ambassador. I had to help those families understand that the person they knew—the full, vital independent human—now lived only in the past and that I needed their input to understand what sort of future he or she would want: an easy death or to be strung between bags of fluids going in, others coming out, to persist despite being unable to struggle.

With my renewed focus, informed consent—the ritual by which a patient signs a piece of paper, authorizing surgery—became not a juridical exercise in naming all the risks as quickly as possible, like the voiceover in an ad for a new pharmaceutical, but an opportunity to forge a covenant with a suffering compatriot: Here we are together, and here are the ways through—I promise to guide you, as best as I can, to the other side.

Being with patients in these moments certainly had its emotional cost, but it also had its rewards. I don’t think I ever spent a minute of any day wondering why I did this work, or whether it was worth it. The call to protect life—and not merely life but another’s identity; it is perhaps not too much to say another’s soul—was obvious in its sacredness.

He paused. “Paul,” he said, “do you think my life has meaning? Did I make the right choices?” It was stunning: even someone I considered a moral exemplar had these questions in the face of mortality.

V’s surgery, chemotherapy, and radiation treatments were trying, but a success. He was back at work a year later, just as I was returning to my clinical duties in the hospital. His hair had thinned and whitened, and the spark in his eyes had dulled. During our final weekly chat, he turned to me and said, “You know, today is the first day it all seems worth it. I mean, obviously, I would’ve gone through anything for my kids, but today is the first day that all the suffering seems worth it.” How little do doctors understand the hells through which we put patients.

Neurosurgery requires a commitment to one’s own excellence and a commitment to another’s identity. The decision to operate at all involves an appraisal of one’s own abilities, as well as a deep sense of who the patient is and what she holds dear.

Death comes for all of us. For us, for our patients: it is our fate as living, breathing, metabolizing organisms. Most lives are lived with passivity toward death—it’s something that happens to you and those around you. But Jeff and I had trained for years to actively engage with death, to grapple with it, like Jacob with the angel, and, in so doing, to confront the meaning of a life. We had assumed an onerous yoke, that of mortal responsibility. Our patients’ lives and identities may be in our hands, yet death always wins. Even if you are perfect, the world isn’t. The secret is to know that the deck is stacked, that you will lose, that your hands or judgment will slip, and yet still struggle to win for your patients. You can’t ever reach perfection, but you can believe in an asymptote toward which you are ceaselessly striving.

Severe illness wasn’t life-altering, it was life-shattering. It felt less like an epiphany—a piercing burst of light, illuminating What Really Matters—and more like someone had just firebombed the path forward. Now I would have to work around it.

My life had been building potential, potential that would now go unrealized.

My carefully planned and hard-won future no longer existed.

Having spent the better part of the week bedridden, with the cancer progressing, I had grown noticeably weaker. My body, and the identity tied to it, had radically changed. No longer was getting in and out of bed to go to the bathroom an automated subcortical motor program; it took effort and planning.

like a runner crossing the finish line only to collapse, without that duty to care for the ill pushing me forward, I became an invalid.

I sat, staring at a photo of Lucy and me from medical school, dancing and laughing; it was so sad, those two, planning a life together, unaware, never suspecting their own fragility.

“Well, there’s that study that says doctors do a worse job prognosticating for patients they’re personally invested in.”

I began to realize that coming in such close contact with my own mortality had changed both nothing and everything. Before my cancer was diagnosed, I knew that someday I would die, but I didn’t know when. After the diagnosis, I knew that someday I would die, but I didn’t know when. But now I knew it acutely. The problem wasn’t really a scientific one. The fact of death is unsettling. Yet there is no other way to live.

The word hope first appeared in English about a thousand years ago, denoting some combination of confidence and desire. But what I desired—life—was not what I was confident about—death. When I talked about hope, then, did I really mean “Leave some room for unfounded desire?” No. Medical statistics not only describe numbers such as mean survival, they measure our confidence in our numbers, with tools like confidence levels, confidence intervals, and confidence bounds. So did I mean “Leave some room for a statistically improbable but still plausible outcome—a survival just above the measured 95 percent confidence interval?” Is that what hope was? Could we divide the curve into existential sections, from “defeated” to “pessimistic” to “realistic” to “hopeful” to “delusional”? Weren’t the numbers just the numbers? Had we all just given in to the “hope” that every patient was above average? It occurred to me that my relationship with statistics changed as soon as I became one.

doctors are entrusted to bring that person’s expectations into the realm of reasonable possibility. What patients seek is not scientific knowledge that doctors hide but existential authenticity each person must find on her own. Getting too deeply into statistics is like trying to quench a thirst with salty water. The angst of facing mortality has no remedy in probability.

When we arrived home from the sperm bank, I got a phone call saying that I did, in fact, have a treatable mutation (EGFR). Chemo was off, thankfully, and Tarceva, a little white pill, became my treatment. I soon began to feel stronger. And even though I no longer really knew what it was, I felt it: a drop of hope. The fog surrounding my life rolled back another inch, and a sliver of blue sky peeked through.

Any part of me that identified with being handsome was slowly being erased—though, in fairness, I was happy to be uglier and alive. Lucy said she loved my skin just the same, acne and all, but while I knew that our identities derive not just from the brain, I was living its embodied nature. The man who loved hiking, camping, and running, who expressed his love through gigantic hugs, who threw his giggling niece high in the air—that was a man I no longer was. At best, I could aim to be him again.

I never gave out specific numbers to patients, either, but didn’t I always have a sense of how the patient would do? How else did I make life-and-death decisions? Then I recalled the times I had been wrong: the time I had counseled a family to withdraw life support for their son, only for the parents to appear two years later, showing me a YouTube video of him playing piano, and delivering cupcakes in thanks for saving his life.

At Lucy’s insistence, we began seeing a couples therapist who specialized in cancer patients. Sitting in her windowless office, in side-by-side armchairs, Lucy and I detailed the ways in which our lives, present and future, had been fractured by my diagnosis, and the pain of knowing and not knowing the future, the difficulty in planning, the necessity of being there for each other. In truth, cancer had helped save our marriage.

“Well, you two are coping with this better than any couple I’ve seen,” the therapist said at the end of our first session. “I’m not sure I have any advice for you.” I laughed as we walked out—at least I was excelling at something again. The years of ministering to terminally ill patients had borne some fruit! I turned to Lucy, expecting to see a smile; instead, she was shaking her head. “Don’t you get it?” she said, taking my hand in hers. “If we’re the best at this, that means it doesn’t get better than this.” If the weight of mortality does not grow lighter, does it at least get more familiar?

While being trained as a physician and scientist had helped me process the data and accept the limits of what that data could reveal about my prognosis, it didn’t help me as a patient. It didn’t tell Lucy and me whether we should go ahead and have a child, or what it meant to nurture a new life while mine faded. Nor did it tell me whether to fight for my career, to reclaim the ambitions I had single-mindedly pursued for so long, but without the surety of the time to complete them.

Like my own patients, I had to face my mortality and try to understand what made my life worth living—and I needed Emma’s help to do so. Torn between being a doctor and being a patient, delving into medical science and turning back to literature for answers, I struggled, while facing my own death, to rebuild my old life—or perhaps find a new one.

I had sent nearly every one of my patients to physical therapy. And now I found myself shocked at how difficult it was. As a doctor, you have a sense of what it’s like to be sick, but until you’ve gone through it yourself, you don’t really know. It’s like falling in love or having a kid. You don’t appreciate the mounds of paperwork that come along with it, or the little things. When you get an IV placed, for example, you can actually taste the salt when they start infusing it. They tell me that this happens to everybody, but even after eleven years in medicine, I had never known.

In physical therapy, I was not even lifting weights yet, just lifting my legs. This was exhausting and humiliating. My brain was fine, but I did not feel like myself. My body was frail and weak—the person who could run half marathons was a distant memory—and that, too, shapes your identity. Racking back pain can mold an identity; fatigue and nausea can, as well. Karen, my PT, asked me what my goals were. I picked two: riding my bike and going for a run. In the face of weakness, determination set in. Day after day I kept at it, and every tiny increase in strength broadened the possible worlds, the possible versions of me. I started adding reps, weights, and minutes to my workouts, pushing myself to the point of vomiting. After two months, I could sit for thirty minutes without tiring. I could start going to dinner with friends again.

I managed six wobbly miles. It was a far cry from the breezy, thirty-mile rides of the previous summer, but at least I could balance on two wheels. Was this a victory or a defeat?

Outside her office, I no longer knew who I was. Because I wasn’t working, I didn’t feel like myself, a neurosurgeon, a scientist—a young man, relatively speaking, with a bright future spread before him. Debilitated, at home, I feared I wasn’t much of a husband for Lucy. I had passed from the subject to the direct object of every sentence of my life. In fourteenth-century philosophy, the word patient simply meant “the object of an action,” and I felt like one. As a doctor, I was an agent, a cause; as a patient, I was merely something to which things happened.

Emma remained vague about any prognostication, and every statistic I cited she rebuffed with a reminder to focus on my values. Though I felt dissatisfied, at least I felt like somebody, a person, rather than a thing exemplifying the second law of thermodynamics (all order tends toward entropy, decay, etc.).

Flush in the face of mortality, many decisions became compressed, urgent and unreceding.

“What are you most afraid or sad about?” she asked me one night as we were lying in bed. “Leaving you,” I told her.

“Will having a newborn distract from the time we have together?” she asked. “Don’t you think saying goodbye to your child will make your death more painful?” “Wouldn’t it be great if it did?” I said. Lucy and I both felt that life wasn’t about avoiding suffering.