When Breath Becomes Air (18 page)

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.