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"Languor settles in."

mole忘快乐 看我这颗dough 2023-01-08


When Breath Becomes Air

Paul Kalanithi


“If the unexamined life was not worth living, was the unlived life worth examining?”




In my memory, the picture has a Vermeer-like quality, a camera obscura sharpness.

...what was falling on my retina was precious.

But then, just like his namesake on the road to Damascus, he felt the calling.

Out of his pen he was spinning gold.

He’d asked to be buried with a copy of Religio Medici.

The trick, I discovered, was to read it aloud, which made the cadence inescapable: “We carry with us the wonders, we seek without us: There is all Africa, and her prodigies in us; we are that bold and adventurous piece of nature, which he that studies, wisely learns in a compendium, what others labour at in a divided piece and endless volume.”

Webster was much possessed by death And saw the skull beneath the skin; And breastless creatures under ground Leaned backward with a lipless grin. —T. S. Eliot, “Whispers of Immortality”

MRIs for back pain are expensive, and unnecessary imaging had lately become a major national point of cost-saving emphasis. But the value of a scan also depends on what you are looking for: X-rays are largely useless for cancer. Still, for many docs, ordering an MRI at this early stage is apostasy. She continued: “X-rays aren’t perfectly sensitive, but it makes sense to start there.”

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.

Thursday night slipped into Friday morning as I was caught in the operating room for thirty-six hours straight, in a series of deeply complex cases: giant aneurysms, intracerebral arterial bypasses, arteriovenous malformations.

The hand of the LORD was upon me, and carried me out in the spirit of the LORD, and set me down in the midst of the valley which was full of bones, And caused me to pass by them round about: and, behold, there were very many in the open valley; and, lo, they were very dry. And he said unto me, Son of man, can these bones live? —Ezekiel 37:1–3, King James translation

All I knew was, if that was the price of medicine, it was simply too high.

Endless books and authors followed, as we worked our way methodically down the list: The Count of Monte Cristo, Edgar Allan Poe, Robinson Crusoe, Ivanhoe, Gogol, The Last of the Mohicans, Dickens, Twain, Austen, Billy Budd…and my brother Suman was sending me the books he had read in college: The Prince, Don Quixote, Candide, Le Morte D’Arthur, Beowulf, Thoreau, Sartre, Camus. Some left more of a mark than others. Brave New World founded my nascent moral philosophy and became the subject of my college admissions essay, in which I argued that happiness was not the point of life. Hamlet bore me a thousand times through the usual adolescent crises. “To His Coy Mistress” and other romantic poems led me and my friends on various joyful misadventures throughout high school—we often sneaked out at night to, for example, sing “American Pie” beneath the window of the captain of the cheerleading team. (Her father was a local minister and so, we reasoned, less likely to shoot.)

I was driven less by achievement than by trying to understand, in earnest: What makes human life meaningful? I still felt literature provided the best account of the life of the mind, while neuroscience laid down the most elegant rules of the brain. Meaning, while a slippery concept, seemed inextricable from human relationships and moral values. T. S. Eliot’s The Waste Land resonated profoundly, relating meaninglessness and isolation, and the desperate quest for human connection. I found Eliot’s metaphors leaking into my own language. Other authors resonated as well. Nabokov, for his awareness of how our suffering can make us callous to the obvious suffering of another.

If the unexamined life was not worth living, was the unlived life worth examining?

No philosopher can explain the sublime better than this, standing between day and night. It was as if this were the moment God said, “Let there be light!” You could not help but feel your specklike existence against the immensity of the mountain, the earth, the universe, and yet still feel your own two feet on the talus, reaffirming your presence amid the grandeur.

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.

I spent the next year in classrooms in the English countryside, where I found myself increasingly often arguing that direct experience of life-and-death questions was essential to generating substantial moral opinions about them.

Cadaver dissection is a medical rite of passage and a trespass on the sacrosanct, engendering a legion of feelings: from revulsion, exhilaration, nausea, frustration, and awe to, as time passes, the mere tedium of academic exercise. Everything teeters between pathos and bathos: here you are, violating society’s most fundamental taboos, and yet formaldehyde is a powerful appetite stimulant, so you also crave a burrito.

Cadaver dissection epitomizes, for many, the transformation of the somber, respectful student into the callous, arrogant doctor.

…time, back in college, had been farcical…

Cadavers reverse the polarity. The mannequins you pretend are real; the cadavers you pretend are fake. But that first day, you just can’t.

…scratching, possibly jaundice, high bilirubin…

I thought: Prosopagnosia is a neurological disorder wherein one loses the ability to see faces. Pretty soon I would have it, hacksaw in hand.

We were instructed to no longer call them “cadavers”; “donors” was the preferred term.

...enough to warrant its own verb: burke…

Yet the best-informed people—doctors—almost never donated their bodies. How informed were the donors, then? As one anatomy professor put it to me, “You wouldn’t tell a patient the gory details of a surgery if that would make them not consent.”

In our rare reflective moments, we were all silently apologizing to our cadavers, not because we sensed the transgression but because we did not.

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. Anatomy professors are perhaps the extreme end of this relationship, yet their kinship to the cadavers remains.

One night on the sofa in my apartment, while studying the reams of wavy lines that make up EKGs, she puzzled over, then correctly identified, a fatal arrhythmia. All at once, it dawned on her and she began to cry: wherever this “practice EKG” had come from, the patient had not survived. The squiggly lines on that page were more than just lines; they were ventricular fibrillation deteriorating to asystole, and they could bring you to tears.

With her fatal stroke, Nuland remembered 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.”

I started in ob-gyn, working the graveyard shift in the labor and delivery ward.

The peritoneum is a membrane that surrounds the abdominal cavity.

After some time, the OB team was called into the room: delivery was near.

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?

“But how do you know when the tracing looks bad enough? Which is worse, being born too early or waiting too long to deliver?” “Judgment call.” What a call to make. In my life, had I ever made a decision harder than choosing between a French dip and a Reuben? How could I ever learn to make, and live with, such judgment calls? I still had a lot of practical medicine to learn, but would knowledge alone be enough, with life and death hanging in the balance? Surely intelligence wasn’t enough; moral clarity was needed as well.

Maybe Beckett’s Pozzo is right. Maybe life is merely an “instant,” too brief to consider. But my focus would have to be on my imminent role, intimately involved with the when and how of death—the grave digger with the forceps.

…by the end of medical school, most students tended to focus on “lifestyle” specialties—those with more humane hours, higher salaries, and lower pressures—the idealism of their med school application essays tempered or lost. As graduation neared and we sat down, in a Yale tradition, to rewrite our commencement oath—a melding of the words of Hippocrates, Maimonides, Osler, along with a few other great medical forefathers—several students argued for the removal of language insisting that we place our patients’ interests above our own. (The rest of us didn’t allow this discussion to continue for long. The words stayed. This kind of egotism struck me as antithetical to medicine and, it should be noted, entirely reasonable. Indeed, this is how 99 percent of people select their jobs: pay, work environment, hours. But that’s the point. Putting lifestyle first is how you find a job—not a calling.)

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.

At those critical junctures, the question is not simply whether to live or die but what kind of life is worth living.

The hypothalamus regulates our basic drives: sleep, hunger, thirst, sex.

With the complacency of bureaucratic work suddenly torn away, I sat up in bed and spat out orders: “One liter bolus of LR, EKG, chest X-ray, stat— I’m on my way in.”

…and I spent the next few hours running between my patient threatening to die in the ER and my patient actively dying in the ICU.

At seven P.M., the phone rang: Mrs. Harvey had coded, and the ICU team was attempting CPR. I raced back to the hospital, and once again, she pulled through.

From that point on, I resolved to treat all my paperwork as patients, and not vice versa.

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 stress drove another resident out of the field entirely; she elected to leave for a less taxing job in consulting. Others would pay even higher prices.

I feared I was on the way to becoming Tolstoy’s stereotype of a doctor, preoccupied with empty formalism, focused on the rote treatment of disease —and utterly missing the larger human significance. (“Doctors came to see her singly and in consultation, talked much in French, German, and Latin, blamed one another, and prescribed a great variety of medicines for all the diseases known to them, but the simple idea never occurred to any of them that they could not know the disease Natasha was suffering from.”)

Technical excellence was not enough. 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.

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.

Had I been more religious in my youth, I might have become a pastor, for it was the pastoral role I’d sought.

Sometimes the news so shocks the mind that the brain suffers an electrical short. This phenomenon is known as a “psychogenic” syndrome, a severe version of the swoon some experience after hearing bad news.

I ordered a battery of labs, scans, and EEGs, searching for a cause, without result.

…husband, his plaid shirt tucked into crisp…

A tureen of tragedy was best allotted by the spoonful. Only a few patients demanded the whole at once; most needed time to digest. They didn’t ask about prognosis—unlike in trauma, where you have only about ten minutes to explain and make a major decision, here I could let things settle.

After surgery, we talked again, this time discussing chemo, radiation, and prognosis.

The standard statistic, the Kaplan-Meier curve, measures the number of patients surviving over time. It is the metric by which we gauge progress, by which we understand the ferocity of a disease. For glioblastoma, the curve drops sharply until only about 5 percent of patients are alive at two years.

I came to believe that it is irresponsible to be more precise than you can be accurate.

Openness to human relationality does not mean revealing grand truths from the apse; it means meeting patients where they are, in the narthex or nave, and bringing them as far as you can. Yet openness to human relationality also carried a price.

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.

Before operating on a patient’s brain, I realized, I must first understand his mind: his identity, his values, what makes his life worth living, and what devastation makes it reasonable to let that life end. The cost of my dedication to succeed was high, and the ineluctable failures brought me nearly unbearable guilt. Those burdens are what make medicine holy and wholly impossible: in taking up another’s cross, one must sometimes get crushed by the weight.

His lab had become a world leader in reading out brain signals, but with his blessing I embarked on a project to do the reverse: to write signals into the brain. After all, if your robot arm can’t feel how hard it’s grasping a wineglass, you will break a lot of wineglasses. 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.

How little do doctors understand the hells through which we put patients.

In residency, there’s a saying: The days are long, but the years are short. In neurosurgical residency, the day usually began at six A.M. and lasted until the operating was done, which depended, in part, on how quick you were in the OR. A resident’s surgical skill is judged by his technique and his speed. You can’t be sloppy, and you can’t be slow. From your first wound closure onward, spend too much time being precise and the scrub tech will announce, “Looks like we’ve got a plastic surgeon on our hands!” Or: “I get your strategy: by the time you finish sewing the top half of the wound, the bottom will have healed on its own! Half the work—very smart!” A chief resident will advise a junior, “Learn to be fast now. You can learn to be good later.” In the OR, everyone’s eyes are always on the clock. For the patient’s sake: How long has he been under anesthesia? During long procedures, nerves can get damaged, muscles can break down, kidneys can fail. For everyone else’s sake: What time are we getting out of here tonight?

I could see that there were two strategies to cutting the time short, perhaps best exemplified by the tortoise and the hare. The hare moves as fast as possible, hands a blur, instruments clattering, falling to the floor; the skin slips open like a curtain, the skull flap is on the tray before the bone dust settles. As a result, the opening might need to be expanded a centimeter here or there because it’s not optimally placed. The tortoise, on the other hand, proceeds deliberately, with no wasted movements, measuring twice, cutting once. No step of the operation needs revisiting; everything moves in a precise, orderly fashion. If the hare makes too many minor missteps and has to keep adjusting, the tortoise wins. If the tortoise spends too much time planning each step, the hare wins.

Those last few administrative tasks before leaving the hospital were like anvils. Could it wait until tomorrow? No. A sigh, and Earth continued to rotate back toward the sun.

But the most sacrosanct regions of the cortex are those that control language. Usually located on the left side, they are called Wernicke’s and Broca’s areas; one is for understanding language and the other for producing it. Damage to Broca’s area results in an inability to speak or write, though the patient can easily understand language. Damage to Wernicke’s area results in an inability to understand language; though the patient can still speak, the language she produces is a stream of unconnected words, phrases, and images, a grammar without semantics. If both areas are damaged, the patient becomes an isolate, something central to her humanity stolen forever. After someone suffers a head trauma or a stroke, the destruction of these areas often restrains the surgeon’s impulse to save a life: What kind of life exists without language?

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.

You can’t ever reach perfection, but you can believe in an asymptote toward which you are ceaselessly striving.

The traditional chemotherapy combination—cisplatin, pemetrexed, possibly with Avastin, too—has a high rate of peripheral neuropathy, so we’d probably switch the cisplatin for carboplatin, which will protect your nerves better, since you’re a surgeon.”

Yes, I thought, and therein was the paradox: 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.

(Alexander Pope: “A little learning is a dangerous thing; / Drink deep, or taste not the Pierian spring.”)

“With chemo, our main decision will be carboplatin versus cisplatin. In isolated studies, head-to-head, carboplatin is better tolerated. Cisplatin has potentially better results but much worse toxicity, especially for the nerves, though all the data is old, and there’s no direct comparison within our modern chemo regimens.

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.

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.

Racking back pain can mold an identity; fatigue and nausea can, as well.

I began to look forward to my meetings with Emma. In her office, I felt like myself, like a self. 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. 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.

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.).

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’d suggest you begin with IVF, then,” she said.

But after several trials of intrauterine insemination, it was clear we needed a higher level of technology: we would need to create at least a few embryos in vitro and implant the healthiest. The others would die. Even in having children in this new life, death played its part.

No one asked about my plans, which was a relief, since I had none.

I thought back to my younger self, who might’ve wanted to “forge in the smithy of my soul the uncreated conscience of my race”; looking into my own soul, I found the tools too brittle, the fire too weak, to forge even my own conscience.

Lost in a featureless wasteland of my own mortality, and finding no traction in the reams of scientific studies, intracellular molecular pathways, and endless curves of survival statistics, I began reading literature again: Solzhenitsyn’s Cancer Ward, B. S. Johnson’s The Unfortunates, Tolstoy’s Ivan Ilyich, Nagel’s Mind and Cosmos, Woolf, Kafka, Montaigne, Frost, Greville, memoirs of cancer patients—anything by anyone who had ever written about mortality.

Hemingway described his process in similar terms: acquiring rich experiences, then retreating to cogitate and write about them. I needed words to go forward.

…woke up in pain, facing another day—no project beyond breakfast seemed tenable. I can’t go on, I thought, and immediately, its antiphon responded, completing Samuel Beckett’s seven words, words I had learned long ago as an undergraduate: I’ll go on. I got out of bed and took a step forward, repeating the phrase over and over: “I can’t go on. I’ll go on.”

But, looking at you, thinking about living ten years is not crazy. You might not make it, but it’s not crazy.” Here was the prognostication—no, not prognostication: justification. Justification of my decision to return to neurosurgery, to return to life.

(People often ask if it is a calling, and my answer is always yes. You can’t see it as a job, because if it’s a job, it’s one of the worst jobs there is.)

Eventually, though, the itch to hold a surgical drill again had become too compelling. Moral duty has weight, things that have weight have gravity, and so the duty to bear mortal responsibility pulled me back into the operating room. Lucy was fully supportive.

The OR schedule came out, and I was assigned to a temporal lobectomy, one of my favorite operations. Commonly, epilepsy is caused by a misfiring hippocampus, which is located deep in the temporal lobe. Removing the hippocampus can cure the epilepsy, but the operation is complex, requiring gentle dissection of the hippocampus off the pia, the delicate transparent covering of the brain, right near the brain stem.

I recalled Henry Adams trying to compare the scientific force of the combustion engine and the existential force of the Virgin Mary. The scientific questions were settled for now, allowing the existential ones full play, yet both were in the doctor’s purview. I had recently learned that the surgeon-scientist position at Stanford—the job for which I had been heir apparent—had been filled while I was out sick. I was crushed, and told her so. “Well,” she said, “this doctor-professor thing can be a real grind. But you know that already. I’m sorry.”

Graduation from residency required two things: meeting a set of national and local requirements, which I’d already done, and the blessing of the faculty.

Reconnecting with patients brought back the meaning of this work. I took antiemetics and nonsteroidal anti-inflammatory drugs (NSAIDs) between cases and just before rounds. I was suffering, but I was fully back. Instead of finding an unused bed, I started resting on the junior residents’ couch, supervising them on the care of my patients, lecturing as I rode a wave of back spasms. The more tortured my body became, the more I relished having done the work. At the end of the first week, I slept for forty hours straight.

The tricky part of illness is that, as you go through it, your values are constantly changing. You try to figure out what matters to you, and then you keep figuring it out. It felt like someone had taken away my credit card and I was having to learn how to budget. You may decide you want to spend your time working as a neurosurgeon, but two months later, you may feel differently. Two months after that, you may want to learn to play the saxophone or devote yourself to the church. Death may be a one-time event, but living with terminal illness is a process.

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.

At some point, then, I began to do a little bargaining—or not exactly bargaining. More like: “God, I have read Job, and I don’t understand it, but if this is a test of faith, you now realize my faith is fairly weak, and probably leaving the spicy mustard off the pastrami sandwich would have also tested it? You didn’t have to go nuclear on me, you know…” Then, after the bargaining, came flashes of anger: “I work my whole life to get to this point, and then you give me cancer?” And now, finally, maybe I had arrived at denial. Maybe total denial. Maybe, in the absence of any certainty, we should just assume that we’re going to live a long time. Maybe that’s the only way forward.

I had been slowly upping the dose of Tylenol and NSAIDs and antiemetics.

She had done what I had challenged myself to do as a doctor years earlier: accepted mortal responsibility for my soul and returned me to a point where I could return to myself. I had attained the heights of the neurosurgical trainee, set to become not only a neurosurgeon but a surgeon-scientist. Every trainee aspires to this goal; almost none make it.

For the last several months, I had striven with every ounce to restore my life to its precancer trajectory, trying to deny cancer any purchase on my life. As desperately as I now wanted to feel triumphant, instead I felt the claws of the crab holding me back. The curse of cancer created a strange and strained existence, challenging me to be neither blind to, nor bound by, death’s approach. Even when the cancer was in retreat, it cast long shadows.

I could hear Emma’s voice again: You have to figure out what’s most important to you. If I no longer sought to fly on the highest trajectory of neurosurgeon and neuroscientist, what did I want? To be a father? To be a neurosurgeon? To teach? I didn’t know. But if I did not know what I wanted, I had learned something, something not found in Hippocrates, Maimonides, or Osler: the physician’s duty is not to stave off death or return patients to their old lives, but to take into our arms a patient and family whose lives have disintegrated and work until they can stand back up and face, and make sense of, their own existence.

During the pastor’s Scripture reading, I suddenly found myself chuckling. It featured a frustrated Jesus whose metaphorical language receives literal interpretation from his followers: Jesus answered and said to her, “Everyone who drinks this water will be thirsty again; but whoever drinks the water I shall give will never thirst; the water I shall give will become in him a spring of water welling up to eternal life.” The woman said to him, “Sir, give me this water, so that I may not be thirsty or have to keep coming here to draw water.” …Meanwhile, the disciples urged him, “Rabbi, eat.” But he said to them, “I have food to eat of which you do not know.” So the disciples said to one another, “Could someone have brought him something to eat?” It was passages like these, where there is a clear mocking of literalist readings of Scripture, that had brought me back around to Christianity after a long stretch, following college, when my notion of God and Jesus had grown, to put it gently, tenuous. During my sojourn in ironclad atheism, the primary arsenal leveled against Christianity had been its failure on empirical grounds. Surely enlightened reason offered a more coherent cosmos. Surely Occam’s razor cut the faithful free from blind faith. There is no proof of God; therefore, it is unreasonable to believe in God.

The prototypical atheist, then, is Graham Greene’s commandant from The Power and the Glory, whose atheism comes from a revelation of the absence of God. The only real atheism must be grounded in a world-making vision. The favorite quote of many an atheist, from the Nobel Prize–winning French biologist Jacques Monod, belies this revelatory aspect: “The ancient covenant is in pieces; man at last knows that he is alone in the unfeeling immensity of the universe, out of which he emerged only by chance.”

The problem, however, eventually became evident: to make science the arbiter of metaphysics is to banish not only God from the world but also love, hate, meaning—to consider a world that is self-evidently not the world we live in.

That’s not to say that if you believe in meaning, you must also believe in God. It is to say, though, that if you believe that science provides no basis for God, then you are almost obligated to conclude that science provides no basis for meaning and, therefore, life itself doesn’t have any. In other words, existential claims have no weight; all knowledge is scientific knowledge.

Science may provide the most useful way to organize empirical, reproducible data, but its power to do so is predicated on its inability to grasp the most central aspects of human life: hope, fear, love, hate, beauty, envy, honor, weakness, striving, suffering, virtue.

Yet the paradox is that scientific methodology is the product of human hands and thus cannot reach some permanent truth.

Yet I returned to the central values of Christianity—sacrifice, redemption, forgiveness—because I found them so compelling. There is a tension in the Bible between justice and mercy, between the Old Testament and the New Testament. And the New Testament says you can never be good enough: goodness is the thing, and you can never live up to it. The main message of Jesus, I believed, is that mercy trumps justice every time.

Not only that, but maybe the basic message of original sin isn’t “Feel guilty all the time.” Maybe it is more along these lines: “We all have a notion of what it means to be good, and we can’t live up to it all the time.” Maybe that’s what the message of the New Testament is, after all. Even if you have a notion as well defined as Leviticus, you can’t live that way. It’s not just impossible, it’s insane.

…but the basic reality of human life stands compellingly against blind determinism.

Moreover, no one, myself included, credits revelation with any epistemic authority. We are all reasonable people—revelation is not good enough.

Lucy and I sat down in the living room, with our laptops, and mapped out the next steps: biopsies, tests, chemotherapy.

Eliot again: “But at my back in a cold blast I hear / the rattle of the bones, and chuckle spread from ear to ear.”

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.

Lucy and I met with Emma on Monday. She confirmed the plan we’d envisioned: bronchoscopic biopsy, look for targetable mutations, otherwise chemo. The real reason I was there, though, was for her guidance. I told her I was taking leave from neurosurgery. “Okay,” she said. “That’s fine. You can stop neurosurgery if, say, you want to focus on something that matters more to you. But not because you are sick. You aren’t any sicker than you were a week ago. This is a bump in the road, but you can keep your current trajectory. Neurosurgery was important to you.”

Once again, I had traversed the line from doctor to patient, from actor to acted upon, from subject to direct object. My life up until my illness could be understood as the linear sum of my choices. As in most modern narratives, a character’s fate depended on human actions, his and others.

King Lear’s Gloucester may complain about human fate as “flies to wanton boys,” but it’s Lear’s vanity that sets in motion the dramatic arc of the play.

From the Enlightenment onward, the individual occupied center stage. But now I lived in a different world, a more ancient one, where human action paled against superhuman forces, a world that was more Greek tragedy than Shakespeare. No amount of effort can help Oedipus and his parents escape their fates; their only access to the forces controlling their lives is through the oracles and seers, those given divine vision. What I had come for was not a treatment plan—I had read enough to know the medical ways forward —but the comfort of oracular wisdom.

Part of my soft palate and pharynx died from dehydration and peeled out of my mouth. I was in pain, floating through varying levels of consciousness, while a pantheon of specialists was brought together to help: medical intensivists, nephrologists, gastroenterologists, endocrinologists, infectious disease specialists, neurosurgeons, general oncologists, thoracic oncologists, otolaryngologists.

During lucid moments, I was acutely aware that with this many voices, cacophony results. In medicine, this is known as the WICOS problem: Who Is the Captain Of the Ship? The nephrologists disagreed with the ICU doctors, who disagreed with the endocrinologists, who disagreed with the oncologists, who disagreed with the gastroenterologists.

Emma was now the captain of the ship, lending a sense of calm to the chaos of this hospitalization. T. S. Eliot sprang to mind: Damyata: The boat responded Gaily, to the hand expert with sail and oar The sea was calm, your heart would have responded Gaily, when invited, beating obedient To controlling hands I leaned back in my hospital bed and closed my eyes. As the darkness of delirium descended again, I finally relaxed.

First-line therapy (Tarceva) had failed. Second-line therapy (chemo) had nearly killed me. Third-line therapy, if I could even get there, made few promises. Beyond that, the vast unknown of experimental treatments.

With little to distinguish one day from the next, time has begun to feel static. In English, we use the word time in different ways: “The time is two forty-five” versus “I’m going through a tough time.” These days, time feels less like the ticking clock and more like a state of being. Languor settles in.

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. I plod, I ponder. Some days, I simply persist.

Verb conjugation has become muddled, as well. Which is correct: “I am a neurosurgeon,” “I was a neurosurgeon,” or “I had been a neurosurgeon before and will be again”? Graham Greene once said that life was lived in the first twenty years and the remainder was just reflection. So what tense am I living in now? Have I proceeded beyond the present tense and into the past perfect? The future tense seems vacant and, on others’ lips, jarring. A few months ago, I celebrated my fifteenth college reunion at Stanford and stood out on the quad, drinking a whiskey as a pink sun dipped below the horizon; when old friends called out parting promises—“We’ll see you at the twenty-fifth!”—it seemed rude to respond with “Well…probably not.”

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.

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.

You left me, sweet, two legacies,— A legacy of love A Heavenly Father would content, Had he the offer of; You left me boundaries of pain Capacious as the sea, Between eternity and time, Your consciousness and me. —Emily Dickinson

…new tumors that had landed in his brain, including leptomeningeal carcinomatosis, a rare and lethal infiltration that brought with it a prognosis of only several months and the looming shadow of swift neurologic decline.

Although Paul accepted his limited life expectancy, neurologic decline was a new devastation, the prospect of losing meaning and agency agonizing.


The manuscript for this book was only partially finished, and Paul now knew that he was unlikely to complete it—unlikely to have the stamina, the clarity, the time.

“April is the cruellest month,” Paul read aloud in the living room that Saturday as I filmed, choosing T. S. Eliot’s The Waste Land as his script. “Mixing memory and desire, stirring / Dull roots with spring rain.”

After initial testing, they placed a mask over his nose and mouth to help his breathing via BiPAP, a breathing support system that supplied a strong mechanized flow of air each time he inhaled, doing much of the work of breathing for him. Though it helps with respiratory mechanics, BiPAP can be hard work for a patient—noisy and forceful, blowing one’s lips apart with each breath like those of a dog with its head out a car window.

After initial testing, they placed a mask over his nose and mouth to help his breathing via BiPAP, a breathing support system that supplied a strong mechanized flow of air each time he inhaled, doing much of the work of breathing for him. Though it helps with respiratory mechanics, BiPAP can be hard work for a patient—noisy and forceful, blowing one’s lips apart with each breath like those of a dog with its head out a car window. I stood close, leaning over the gurney, my hand in Paul’s as the steady whoosh, whoosh of the machine began.

Of concern was whether Paul would remain too ill to ever come off the ventilator—would he be lost to delirium and then organ failure, first mind and then body slipping away? We’d witnessed this agonizing scenario as physicians. Paul explored the alternative: in lieu of intubation, he could choose “comfort care,” though death would come more surely and swiftly.

“He doesn’t want a Hail Mary,” I said. “If he doesn’t have a chance of meaningful time, he wants to take the mask off and hold Cady.”

I stroked Paul’s hair, whispering, “You’re a brave Paladin”—my nickname for him—and singing quietly into his ear a favorite jingle we’d made up over the previous months, its core message being “Thank you for loving me.”

…quizzical but calm, his beloved baby never suspecting that this moment was a farewell. Softly I sang Cady’s bedtime song, to her, to both of them, and then released her. into night, a

When Breath Becomes Air is, in a sense, unfinished, derailed by Paul’s rapid decline, but that is an essential component of its truth, of the reality Paul faced.

Dying in one’s fourth decade is unusual now, but dying is not. “The thing about lung cancer is that it’s not exotic,” Paul wrote in an email to his best friend, Robin. “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 exhortations to gather rosebuds, but: Here’s what lies up ahead on the road.” Of course, he did more than just describe the terrain. He traversed it bravely.

“Always the seer is a sayer,” Emerson wrote. “Somehow his dream is told; somehow he publishes it with solemn joy.” Writing this book was a chance for this courageous seer to be a sayer, to teach us to face death with integrity.

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 Brontës, Keats, and Stephen Crane. The bad news is that I haven’t written anything.”

The earth is quickly turned over by worms, the processes of nature marching on, reminding me of what Paul saw and what I now carry deep in my bones, too: the inextricability of life and death, and the ability to cope, to find meaning despite this, because of this. What happened to Paul was tragic, but he was not a tragedy.

“Bereavement is not the truncation of married love,” C. S. Lewis wrote, “but one of its regular phases—like the honeymoon. What we want is to live our marriage well and faithfully through that phase too.” Caring for our daughter, nurturing relationships with family, publishing this book, pursuing meaningful work, visiting Paul’s grave, grieving and honoring him, persisting…my love goes on—lives on—in a way I’d never expected.

Reflecting on his purpose, I often think of lyrics from the hymn derived from The Pilgrim’s Progress: “Who would true valour see, / Let him come hither…/ Then fancies fly away, / He’ll fear not what men say, / He’ll labour night and day / To be a pilgrim.”









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