January 13, 2024

《When Breath Becomes Air》书摘

“Why me?” (Answer: Why not me?)

PART I In Perfect Health I Begin

seeking a deeper understanding of a life of the mind. I studied literature and philosophy to understand what makes life meaningful, studied neuroscience and worked in an fMRI lab to understand how the brain could give rise to an organism capable of finding meaning in the world, and enriched my relationships with a circle of dear friends through various escapades.

I had come to see language as an almost supernatural force, existing between people, bringing our brains, shielded in centimeter-thick skulls, into communion. A word meant something only between people, and life’s meaning, its virtue, had something to do with the depth of the relationships we form. It was the relational aspect of humans—i. e., “human relationality”—that undergirded meaning. Yet somehow, this process existed in brains and bodies, subject to their own physiologic imperatives, prone to breaking and failing. There must be a way, I thought, that the language of life as experienced—of passion, of hunger, of love—bore some relationship, however convoluted, to the language of neurons, digestive tracts, and heartbeats.

But I couldn’t quite let go of the question: Where did biology, morality, literature, and philosophy intersect?

All of medicine, not just cadaver dissection, trespasses into sacred spheres. 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.

How much neurologic suffering would you let your child endure before saying that death is preferable?

My first day in the hospital, the chief resident said to me, “Neurosurgery residents aren’t just the best surgeons— we’re the best doctors in the hospital. That’s your goal. Make us proud.” The chairman, passing through the ward: “Always eat with your left hand. You’ve got to learn to be ambidextrous.” One of the senior residents: “Just a heads-up—the chief is going through a divorce, so he’s really throwing himself into his work right now. Don’t make small talk with him.”

As my skills increased, so too did my responsibility. Learning to judge whose lives could be saved, whose couldn’t be, and whose shouldn’t be requires an unattainable prognostic ability. I made mistakes. Rushing a patient to the OR to save only enough brain that his heart beats but he can never speak, he eats through a tube, and he is condemned to an existence he would never want. . . I came to see this as a more egregious failure than the patient dying. 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.

He’d assess the abdomen, then ask for my prognosis on a patient’s cognitive function. “Well, he could still be a senator,” I once replied, “but only from a small state.” Jeff laughed, and from that moment on, state population became our barometer for head-injury severity. “Is he a Wyoming or a California?”Jeff would ask, trying to determine how intensive his care plan should be. Or I’d say, “Jeff, I know his blood pressure is labile, but I gotta get him to the OR or he’s gonna go from Washing-ton to Idaho—can you get him stabilized?”

In that moment, all my occasions of failed empathy came rushing back to me: the times I had pushed discharge over patient’s worries, ignored patients’ pain when other demands pressed. The people whose suffering I saw, noted, and neatly packaged into various diagnoses, the significance of which I failed to recognize—they all returned, vengeful, angry, and inexorable.

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.

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.

Second, it is important to be accurate, but you must always leave some room for hope. Rather than saying, “Median survival is eleven months” or “You have a ninety-five percent chance of being dead in two years,” I’d say, “Most patients live many months to a couple of years.” This was, to me, a more honest description.

Those apocryphal doctors who gave specific numbers(“The doctor told me I had six months to live”): Who were they, I wondered, and who taught them statistics?

Patients, when hearing the news, mostly remain mute. (One of the early meanings of patient, after all, is “one who endures hardship without complaint.”)

“We’re gonna fight and beat this thing, Doc.”The armament varies, from prayer to wealth to herbs to stem cells. To me, that hardness always seems brittle, unrealistic optimism the only alternative to crushing despair.

Jeff paused, and I awaited his story. Instead, he laughed, punched me in the arm, and said, “Well, I guess I learned one thing: if I’m ever feeling down about my work, I can always talk to a neurosurgeon to cheer myself up.”

The implications of writing signals into the brain, or “neuromodulation,” however, were far more wide-reaching than that: being able to control neural firing would conceivably allow treatment of a host of currently untreatable or intractable neurological and psychiatric diseases, from major depression to Huntington’s to schizophrenia to Tourette’s to OCD. . . the possibilities were limitless.

While most scientists connived to publish in the most prestigious journals and get their names out there, V maintained that our only obligation was to be authentic to the scientific story and to tell it uncompromisingly. I’d never met someone so successful who was also so committed to goodness. V was an actual paragon.

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.

One of my favorite nurses, after sticking around until ten p. m. one night to help us finish a long and difficult case, said to me, “Thank God I have tomorrow off. Do you, too?”“Um, no.”“But at least you can come in later or something, right? When do you usually get in?”“Six a. m.”“No. Really?”“Yep.”“Every day?”“Every day.”“Weekends, too?”“Don’t ask.”

“Fourteen one two eight,” he pleaded with me, holding my hand.“Fourteen one two eight.”“I’m sorry.”“Fourteen one two eight,” he said mournfully, staring into my eyes. And then I left to catch up to the team. He died a few months later, buried with whatever message he had for the world.

PART II Cease Not till Death

I envied their happy faces, knowing that, statistically, they all probably had highly treatable forms of cancer, and reasonable life expectancies. Only 0.0012 percent of thirty-six-year-olds get lung cancer. Yes, all cancer patients are unlucky, but there’s cancer, and then there’s CANCER, and you have to be really unlucky to have the latter.

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.

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.”

As a doctor, I knew not to declare “Cancer is a battle I’m going to win!” or ask “Why me?” (Answer: Why not me?)

Nor did it tell me whether to fight for my career, to reclaim the ambitions I had singlemindedly pursued for so long, but without the surety of the time to complete them.

I had sent nearly every one of my patients to physical therapy. And now I found myself shocked at how difficult it was.

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.

But in Emma’s office, Lucy and I could joke, trade doctor lingo, talk freely about our hopes and dreams, try to assemble a plan to move forward. Two months in, 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.).

Our relationship was still deep in meaning, a shared and evolving vocabulary about what mattered. If human relationality formed the bedrock of meaning, it seemed to us that rearing children added another dimension to that meaning.

“What are you most afraid or sad about?” she asked me one night as we were lying in bed. “Leaving you,” I told her. I knew a child would bring joy to the whole family, and I couldn’t bear to picture Lucy husbandless and childless after I died, but I was adamant that the decision ultimately be hers: she would likely have to raise the child on her own after all, and to care for both of us as my illness progressed. “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.

Years ago, it had occurred to me that Darwin and Nietzsche agreed on one thing: the defining characteristic of the organism is striving. Describing life otherwise was like painting a tiger without stripes. After so many years of living with death, I’d come to understand that the easiest death wasn’t necessarily the best. We talked it over. Our families gave their blessing. We decided to have a child. We would carry on living, instead of dying.

I was searching for a vocabulary with which to make sense of death, to find a way to begin defining myself and inching forward again. The privilege of direct experience had led me away from literary and academic work, yet now I felt that to understand my own direct experiences, I would have to translate them back into language.

The monolithic uncertainty of my future was deadening; everywhere I turned, the shadow of death obscured the meaning of any action.

Another part wished she’d said, “Going back to being a neurosurgeon is crazy for you—pick something easier.” I was startled to realize that in spite of everything, the last few months had had one area of lightness: not having to bear the tremendous weight of the responsibility neurosurgery demanded— and part of me wanted to be excused from picking up the yoke again.

I had already mastered those skills, anyway, and needed to learn only the nuances of complex operations to feel complete. I ended my days exhausted beyond measure, muscles on fire, slowly improving. But the truth was, it was joyless. The visceral pleasure I’d once found in operating was gone, replaced by an iron focus on overcoming the nausea, the pain, the fatigue. Coming home each night, I would scarf down a handful of pain pills, then crawl into bed next to Lucy, who had returned to a full work sched-ule as well.

I had been using cancer as an excuse not to take full responsibility for my patients. On the other hand, it was a good excuse, damn it.

It struck me that I had traversed the five stages of grief—the “Denial→Anger → Bargaining → Depression → Acceptance” cliché—but I had done it all backward. On diagnosis, I’d been prepared for death. I’d even felt good about it. I’d accepted it. I’d been ready. Then I slumped into a depression, as it became clear that I might not be dying so soon after all, which is, of course, good news, but also confusing and strangely enervating.

Freud started his career as a successful neuroscientist. When he realized neuroscience would need at least a century to catch up with his true ambition of understanding the mind, he set aside his microscope. I think I felt something similar.

As we uncovered the patient, the scrub nurse, one with whom I hadn’t worked before, said, “You on call this weekend, Doc?”“Nope.” And possibly never again. “Got any more cases today?”“Nope.” And possibly never again. “Shit, well, I guess that means this is a happy ending! Work’s done. I like happy endings, don’t you, Doc?”“Yeah. Yeah, I like happy endings.”

I had always jokingly threatened that when I was in charge, instead of the high-energy pop music everyone liked to play in the OR, we’d listen exclusively to bossa nova. I put Getz/Gilberto on the radio, and the soft, sonorous sounds of a saxophone filled the room.

Confusion yielded to anger. Some kid two years out of med school, no older than my junior residents, was really arguing with me? It’d be one thing if he were right, but he wasn’t making any sense.

I thought back to med school, when a patient had told me that she always wore her most expensive socks to the doctor’s office, so that when she was in a patient’s gown and shoeless, the doctor would see the socks and know she was a person of substance, to be treated with respect.

“You have five good years left,” she said. She pronounced it, but without the authoritative tone of an oracle, without the confidence of a true believer. She said it, instead, like a plea. Like that patient who could speak only in numbers. Like she was not so much speaking to me as pleading, a mere human, with whatever forces and fates truly control these things.

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 tortoise-like approach. I plod, I ponder.

all about delayed gratification; you’re always thinking about what you’ll be doing five years down the line. But now I don’t know what I’ll be doing five years down the line. I may be dead. I may not be. I may be healthy. I may be writing. I don’t know. And so it’s not all that useful to spend time thinking about the future—that is, beyond lunch.

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.


Strategies for retaining the mental focus needed to write, despite the punishing fatigue of progressive cancer, were the focus of his palliative-care appointments. He was determined to keep writing.

When Paul emailed his best friend in May 2013 to inform him that he had terminal cancer, he wrote, “The good news is I’ve already outlived two Bront. s, Keats, and Stephen Crane. The bad news is that I haven’t written anything.”

Two days after Paul died, I wrote a journal entry addressed to Cady:“When someone dies, people tend to say great things about him. Please know that all the wonderful things people are saying now about your dad are true. He really was that good and that brave.”