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EPILOGUE

Lucy Kalanithi

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

PAUL DIED ON MONDAY, March 9, 2015, surrounded by his family, in a hospital bed roughly two hundred yards from the labor and delivery ward where our daughter, Cady, had entered the world eight months before. Between Cady’s birth and Paul’s death, if you’d seen us sucking on ribs at our local barbecue restaurant and smiling over a shared beer, a dark-haired baby with long eyelashes napping in her stroller beside us, you’d never have guessed that Paul likely had less than a year to live, nor that we understood that.

It was around Cady’s first Christmas, when she was five months old, that Paul’s cancer began to resist the third-line drugs recommended after Tarceva and then chemotherapy had stopped working. Cady tried her first solid food during that holiday season, snug in candy-cane-striped pajamas, gumming mashed yams as family gathered at Paul’s childhood home in Kingman, Arizona, the house aglow with candles and chatter. His strength waned over the following months, but we continued to experience joyful moments, even in the midst of our sorrow. We hosted cozy dinner parties, held each other at night, and delighted in our daughter’s bright eyes and calm nature. And, of course, Paul wrote, reclining in his armchair, wrapped in a warm fleece blanket. In his final months, he was singularly focused on finishing this book.

As winter turned to spring, the saucer magnolias in our neighborhood bloomed large and pink, but Paul’s health was declining rapidly. By late February, he needed supplemental oxygen to keep his breathing comfortable. I was adding his untouched lunch to the trash can atop his untouched breakfast, and a few hours later I’d add an untouched dinner to the pile. He used to love my breakfast sandwiches—egg, sausage, and cheese on a roll—but with his waning appetite we’d changed to eggs and toast, then just eggs, until even those became intolerable. Even his favorite smoothies, the glasses I filled with a steady stream of calories, were unappetizing.

Bedtime crept earlier, Paul’s voice slurred intermittently, and his nausea became unremitting. A CT scan and brain MRI confirmed worsening cancer in Paul’s lungs and 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. The news hit Paul hard. He said little, but as a neurosurgeon, he knew what lay ahead. Although Paul accepted his limited life expectancy, neurologic decline was a new devastation, the prospect of losing meaning and agency agonizing. We strategized with Paul’s oncologist about his top priority: preserving mental acuity as long as possible. We arranged entry into a clinical trial, consultation with a neuro-oncology specialist, and a visit with his palliative-care team to discuss hospice options, all in service of maximizing the quality of his remaining time. My heart swelled even as I steeled myself, anticipating his suffering, worrying that he had only weeks left—if that. I envisioned his funeral as we held hands. I didn’t know that Paul would die within days.

We spent Paul’s last Saturday with family in the nest of our living room, Paul holding Cady in his armchair; his father on my nursing glider; his mother and I on sofas nearby. Paul sang to Cady and bounced her gently in his lap. She grinned widely, oblivious to the tubing that delivered oxygen to his nose. His world became smaller; I deflected nonfamily visitors, Paul telling me, “I want everyone to know that even if I don’t see them, I love them. I cherish their friendship, and one more glass of Ardbeg won’t change that.” He didn’t write anything that day. 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.

To prepare for the clinical trial, Paul had stopped taking the daily targeted-therapy pill that had been insufficiently controlling his cancer. There was a risk that the cancer might grow rapidly, or “flare,” after he stopped the medication. Therefore, Paul’s oncologist had instructed me to videotape him daily, doing the same task, to track any deficits in his speech or gait. “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.” The family chuckled when, though it was not part of the assignment, he set the book facedown on his lap and insisted on reciting from memory.

“So like him!” his mother said, smiling.

The next day, Sunday, we hoped for a continuation of the calm weekend. If Paul felt well enough, we would attend church, then take Cady and her cousin to the baby swings at the park up the hill. We’d continue to absorb the recent painful news, share the sorrow, savor our time together.

But instead, time sped up.

Early Sunday morning, I stroked Paul’s forehead and found it scorching with fever, 104 degrees, though he was relatively comfortable and free of other new symptoms. We made it in and out of the emergency room within a few hours, Paul’s father and Suman with us, returning home to the rest of the family after starting antibiotics in case of pneumonia (Paul’s chest X-ray was dense with tumors, which could obscure an infection). But was this, instead, the cancer progressing rapidly? Paul napped comfortably in the afternoon, but he was gravely ill. I started to cry as I watched him sleep, then crept out to our living room, where his father’s tears joined mine. I already missed him.

Sunday evening, Paul’s condition worsened abruptly. He sat on the edge of our bed, struggling to breathe—a startling change. I called an ambulance. When we reentered the emergency room, Paul on a gurney this time, his parents close behind us, he turned toward me and whispered, “This might be how it ends.”

“I’m here with you,” I said.

The hospital staff greeted Paul warmly, as always. But they moved quickly once they saw his condition. 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.

Paul’s blood carbon dioxide level was critically high, indicating that the work of breathing was overwhelming him. Blood tests suggested that some of the excess carbon dioxide had been accumulating over days to weeks, as his lung disease and debility had advanced. Because his brain had slowly become acclimated to higher-than-normal levels of carbon dioxide, he remained lucid. He observed. He understood, as a physician, the ominous test results. I understood them, too, walking behind him as he was wheeled to an intensive-care room, one where so many of his own patients had struggled before or after neurosurgery, their families assembled in vinyl chairs by their bedsides. “Will I need to be intubated?” he asked me between BiPAP breaths when we arrived. “Should I be intubated?”

Through the night, Paul discussed that question in a series of conversations with his physicians, his family, and then just me. Around midnight, the critical-care attending, a longtime mentor to Paul, came in to discuss treatment options with the family. BiPAP was a temporary solution, he said. The only remaining intervention would be for Paul to be intubated—put on a ventilator. Was that what he wanted?

The key question quickly came into view: Could the sudden respiratory failure be reversed?

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. “Even if I make it through this,” he said, thinking of the cancer in his brain, “I’m not sure I see a future that includes meaningful time.” His mother chimed in, desperately. “No decisions tonight, Pubby,” she said. “Let’s all get some rest.” After ensuring his “do not resuscitate” status, Paul agreed. Sympathetic nurses brought him extra blankets. I switched off the fluorescent lights.

Paul managed to doze until sunrise, his father sitting vigil while I napped briefly in an adjacent room, hoping to preserve my mental strength, knowing that the following day might be the hardest of my life. I crept back to Paul’s room at six A.M., the lights still low, the intensive-care monitors chiming intermittently. Paul opened his eyes. We talked again about “comfort care”—avoiding aggressive attempts to forestall his decline—and he wondered aloud whether he could go home. He was so ill that I worried he might suffer and die on the way. However, I said I would do everything possible to take him home if that was most important to him, nodding that yes, comfort care might be the direction we were headed. Or was there some way to re-create home here? Between BiPAP puffs, he answered: “Cady.”

Cady arrived in short order—our friend Victoria had retrieved her from home—and began her own unwitting, cheerful vigil, happily nestled in the crook of Paul’s right arm, tugging at her tiny socks, batting at his hospital blankets, smiling and cooing, unbothered by the BiPAP machine as it continued to blow, keeping Paul alive.

The medical team came by on rounds, discussing Paul’s case outside the room, where his family and I joined them. Paul’s acute respiratory failure was likely rapid cancer progressing. His carbon dioxide level was rising still—a hardening indication for intubation. The family was torn: Paul’s oncologist had phoned in, hopeful that the acute problem could be ameliorated, but the physicians present were less optimistic. I entreated them to weigh in with as much conviction as possible on the chance of reversing his abrupt decline.

“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 returned to Paul’s bedside. He looked at me, his dark eyes alert above the nose bridge of the BiPAP mask, and said clearly, his voice soft but unwavering, “I’m ready.”

Ready, he meant, to remove the breathing support, to start morphine, to die.

The family gathered together. During the precious minutes after Paul’s decision, we all expressed our love and respect. Tears glistened in Paul’s eyes. He expressed gratitude to his parents. He asked us to ensure that his manuscript be published in some form. He told me a last time that he loved me. The attending physician stepped in with strengthening words: “Paul, after you die, your family will fall apart, but they’ll pull it back together because of the example of bravery you set.” Jeevan’s eyes were trained on Paul as Suman said, “Go in peace, my brother.” With my heart breaking, I climbed into the last bed we would share.

I thought of other beds we’d shared. Eight years prior, as medical students, we’d slept similarly ensconced in a twin bed next to my grandfather as he lay dying at home, having cut our honeymoon short to help with caregiving duties. We awakened every few hours to give him medications, my love for Paul deepening as I watched him lean in and listen closely to my grandfather’s whispered requests. We’d never have imagined this scene, Paul’s own deathbed, so near in our future. Twenty-two months ago, we’d cried in a bed on another floor of this same hospital as we learned of Paul’s cancer diagnosis. Eight months ago, we’d been together here in my hospital bed the day after Cady was born, both napping, the first good, long sleep I’d had since her birth, wrapped in each other’s arms. I thought of our cozy bed empty at home, remembered falling in love in New Haven twelve years earlier, surprised right away by how well our bodies and limbs fit together, and thought of how ever since, we’d both slept best when entwined. I hoped with all I had that he felt that same restful comfort now.

An hour later, the mask and monitors were off, and morphine was flowing through Paul’s IV. He was breathing steadily but shallowly, and he appeared comfortable. Nonetheless, I asked him whether he needed more morphine, and he nodded yes, his eyes closed. His mother sat close; his father’s hand rested atop his head. Finally, he slipped into unconsciousness.

For more than nine hours, Paul’s family—his parents, brothers, sister-in-law, daughter, and I—sat vigil as Paul, unconscious, now drew increasingly halting, infrequent breaths, his eyelids closed, his face unburdened. His long fingers rested softly in mine. Paul’s parents cradled Cady and then put her in the bed again to snuggle, nurse, nap. The room, saturated with love, mirrored the many holidays and weekends we had all spent together over the years. 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.” A close cousin and uncle arrived, and then our pastor. The family shared loving anecdotes and inside jokes; then we all took turns weeping, studying Paul’s face and each other’s with concern, steeped in the preciousness and pain of this time, our last hours all together.

Warm rays of evening light began to slant through the northwest-facing window of the room as Paul’s breaths grew more quiet. Cady rubbed her eyes with chubby fists as her bedtime approached, and a family friend arrived to take her home. I held her cheek to Paul’s, tufts of their matching dark hair similarly askew, his face serene, hers 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.

As the room darkened into night, a low wall lamp glowing warmly, Paul’s breaths became faltering and irregular. His body continued to appear restful, his limbs relaxed. Just before nine o’clock, his lips apart and eyes closed, Paul inhaled and then released one last, deep, final breath.

—

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. During the last year of his life, Paul wrote relentlessly, fueled by purpose, motivated by a ticking clock. He started with midnight bursts when he was still a neurosurgery chief resident, softly tapping away on his laptop as he lay next to me in bed; later he spent afternoons in his recliner, drafted paragraphs in his oncologist’s waiting room, took phone calls from his editor while chemotherapy dripped into his veins, carried his silver laptop everywhere he went. When his fingertips developed painful fissures because of his chemotherapy, we found seamless, silver-lined gloves that allowed use of a trackpad and keyboard. 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.

This book carries the urgency of racing against time, of having important things to say. Paul confronted death—examined it, wrestled with it, accepted it—as a physician and a patient. He wanted to help people understand death and face their mortality. 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.

Paul’s decision not to avert his eyes from death epitomizes a fortitude we don’t celebrate enough in our death-avoidant culture. His strength was defined by ambition and effort, but also by softness, the opposite of bitterness. He spent much of his life wrestling with the question of how to live a meaningful life, and his book explores that essential territory. “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.

Most of our family and friends will have been unaware, until the publication of this book, of the marital trouble Paul and I weathered toward the end of his residency. But I am glad Paul wrote about it. It’s part of our truth, another redefinition, a piece of the struggle and redemption and meaning of Paul’s life and mine. His cancer diagnosis was like a nutcracker, getting us back into the soft, nourishing meat of our marriage. We hung on to each other for his physical survival and our emotional survival, our love stripped bare. We each joked to close friends that the secret to saving a relationship is for one person to become terminally ill. Conversely, we knew that one trick to managing a terminal illness is to be deeply in love—to be vulnerable, kind, generous, grateful. A few months after his diagnosis, we sang the hymn “The Servant Song” while standing side by side in a church pew, and the words vibrated with meaning as we faced uncertainty and pain together: “I will share your joy and sorrow / Till we’ve seen this journey through.”

When Paul told me, immediately after his diagnosis, to remarry after he died, it exemplified the way he would, throughout his illness, work hard to secure my future. He was fiercely committed to ensuring the best for me, in our finances, my career, what motherhood would mean. At the same time, I worked hard to secure his present, to make his remaining time the best it could be, tracking and managing every symptom and aspect of his medical care—the most important doctoring role of my life—while supporting his ambitions, listening to his whispered fears as we embraced in the safety of our darkened bedroom, witnessing, acknowledging, accepting, comforting. We were as inseparable as we had been as medical students, when we would hold hands during lectures. Now we held hands in his coat pocket during walks outside after chemotherapy, Paul in a winter coat and hat even when the weather turned warm. He knew he would never be alone, never suffer unnecessarily. At home in bed a few weeks before he died, I asked him, “Can you breathe okay with my head on your chest like this?” His answer was “It’s the only way I know how to breathe.” That Paul and I formed part of the deep meaning of each other’s lives is one of the greatest blessings that has ever come to me.

Both of us drew strength from Paul’s family, who bolstered us as we weathered his illness and supported us in bringing our own child into the family. Despite stunning grief over their son’s illness, his parents remained an unwavering source of comfort and security. Renting an apartment nearby, they visited often, Paul’s father rubbing his feet, his mother making him Indian dosa with coconut chutney. Paul, Jeevan, and Suman lounged on our sofas, Paul’s legs propped up to alleviate his back pain, discussing the “syntax” of football plays. Jeevan’s wife, Emily, and I laughed nearby while Cady and her cousins, Eve and James, napped. On those afternoons, our living room felt like a small, safe village. Later in that same room, Paul would hold Cady in his writing chair, reading aloud works by Robert Frost, T. S. Eliot, Wittgenstein, as I snapped photos. Such simple moments swelled with grace and beauty, and even luck, if such a concept can be said to exist at all. And yet we did feel lucky, grateful—for family, for community, for opportunity, for our daughter, for having risen to meet each other at a time when absolute trust and acceptance were required. Although these last few years have been wrenching and difficult—sometimes almost impossible—they have also been the most beautiful and profound of my life, requiring the daily act of holding life and death, joy and pain in balance and exploring new depths of gratitude and love.

Relying on his own strength and the support of his family and community, 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. He cried on the day he was diagnosed. He cried while looking at a drawing we kept on the bathroom mirror that said, “I want to spend all the rest of my days here with you.” He cried on his last day in the operating room. He let himself be open and vulnerable, let himself be comforted. Even while terminally ill, Paul was fully alive; despite physical collapse, he remained vigorous, open, full of hope not for an unlikely cure but for days that were full of purpose and meaning.

Paul’s voice in When Breath Becomes Air is strong and distinctive, but also somewhat solitary. Parallel to this story are the love and warmth and spaciousness and radical permission that surrounded him. We all inhabit different selves in space and time. Here he is as a doctor, as a patient, and within a doctor-patient relationship. He wrote with a clear voice, the voice of someone with limited time, a ceaseless striver, though there were other selves as well. Not fully captured in these pages are Paul’s sense of humor—he was wickedly funny—or his sweetness and tenderness, the value he placed on relationships with friends and family. But this is the book he wrote; this was his voice during this time; this was his message during this time; this was what he wrote when he needed to write it. Indeed, 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.

Paul was proud of this book, which was a culmination of his love for literature—he once said that he found poetry more comforting than Scripture—and his ability to forge from his life a cogent, powerful tale of living with death. 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.” His journey thereafter was one of transformation—from one passionate vocation to another, from husband to father, and finally, of course, from life to death, the ultimate transformation that awaits us all. I am proud to have been his partner throughout, including while he wrote this book, an act that allowed him to live with hope, with that delicate alchemy of agency and opportunity that he writes about so eloquently, until the very end.

—

Paul was buried in a willow casket at the edge of a field in the Santa Cruz Mountains, overlooking the Pacific Ocean and a coastline studded with memories—brisk hikes, seafood feasts, birthday cocktails. Two months before, on a warm weekend in January, we’d dipped Cady’s chubby feet into the briny water at a beach below. He was unattached to the fate of his body after he died, and he left it to us to make decisions on his behalf. I believe we chose well. Paul’s grave looks west, over five miles of green hillcrests, to the ocean. Around him are hills covered in wild grass, coniferous trees, and yellow euphorbia. As you sit down, you hear wind, chirping birds, the scuffling of chipmunks. He made it here on his own terms, and his grave site feels appropriately full of ruggedness and honor, a place he deserves to be—a place we all deserve to be. I am reminded of a line from a blessing my grandfather liked: “We shall rise insensibly, and reach the tops of the everlasting hills, where the winds are cool and the sight is glorious.”

And yet this is not always an easy place to be. The weather is unpredictable. Because Paul is buried on the windward side of the mountains, I have visited him in blazing sun, shrouding fog, and cold, stinging rain. It can be as uncomfortable as it is peaceful, both communal and lonely—like death, like grief—but there is beauty in all of it, and I think this is good and right.

I visit his grave often, taking a small bottle of Madeira, the wine of our honeymoon destination. Each time, I pour some out on the grass for Paul. When Paul’s parents and brothers are with me, we talk as I rub the grass as if it were Paul’s hair. Cady visits his grave before her nap, lying on a blanket, watching the clouds pass overhead and grabbing at the flowers we’ve laid down. The evening before Paul’s memorial service, our siblings and I gathered with twenty of Paul’s oldest, closest friends, and I wondered briefly if we’d mar the grass because we poured out so much whiskey.

Often I return to the grave after leaving flowers—tulips, lilies, carnations—to find the heads eaten by deer. It’s just as good a use for the flowers as any, and one Paul would have liked. 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.

I expected to feel only empty and heartbroken after Paul died. It never occurred to me that you could love someone the same way after he was gone, that I would continue to feel such love and gratitude alongside the terrible sorrow, the grief so heavy that at times I shiver and moan under the weight of it. Paul is gone, and I miss him acutely nearly every moment, but I somehow feel I’m still taking part in the life we created together. “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.

When I see the hospital where Paul lived and died as a physician and a patient, I understand that had he lived, he would have made great contributions as a neurosurgeon and neuroscientist. He would have helped countless patients and their families through some of the most challenging moments of their lives, the task that drew him to neurosurgery in the first place. He was, and would have continued to be, a good person and a deep thinker. Instead, this book is a new way for him to help others, a contribution only he could make. This doesn’t make his death, our loss, any less painful. But he found meaning in the striving. On page 115 of this book, he wrote, “You can’t ever reach perfection, but you can believe in an asymptote toward which you are ceaselessly striving.” It was arduous, bruising work, and he never faltered. This was the life he was given, and this is what he made of it. When Breath Becomes Air is complete, just as it is.

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.” 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.” Paul’s decision to look death in the eye was a testament not just to who he was in the final hours of his life but who he had always been. For much of his life, Paul wondered about death—and whether he could face it with integrity. In the end, the answer was yes.

I was his wife and a witness.