Praise for A Life Beyond Reason
“A poignant, powerfully written story of a radically mismanaged delivery at a major medical institution and the painful yet paradoxically luminous consequences of that catastrophe. Simultaneously a timely exploration of medical error, a moving disability memoir, and an elegy for the blithe spirit of a much-loved child, Gabbard’s book will be must-reading not only for investigators of medical malpractice and theorists of disability but also for all who are awed by the intensity of parental devotion.”
—SANDRA M. GILBERT, author of Death’s Door and coauthor of The Madwoman in the Attic
“The book is STUNNING. So eloquent and full of wisdom—and a certain tragicomic humor. I loved it. . . . The moral force of it is unquestionable—so real and overpowering but also unassuming in a lot of ways.”
—TERRY CASTLE, author of Masquerade and Civilization
“If you have ever questioned the very foundation of your beliefs—you will want to read this book. If you have been misjudged, mistreated, misdiagnosed by the medical establishment—you will want to read this book. If you have been a caregiver for someone with disabilities—you will want to read this book. But most of all, if you have loved a child beyond measure, beyond compare—you must read this book. Chris Gabbard takes us along on his family’s fourteen-year journey with August, his beautiful, beloved boy, who is also profoundly disabled. With clarity and grace, Gabbard describes the utterly indescribable, bringing it to life on the page. Early on in this haunting and moving book, Gabbard says, ‘When intertwined, love and grief become as ferocious as desire.’ As you turn the pages, you will come to understand precisely what he means.”
—ANDREA LUNSFORD, author of The Everyday Writer
“It’s hard to speak highly enough about the unforgettable book Chris Gabbard has written about his disabled son’s life and times and the medical industrial complex that tested Gabbard’s family beyond what any of us can imagine having to endure. This gorgeously eloquent memoir is excruciating in its impact, and is in the top most moving, troubling, and ultimately rewarding reading experiences I’ve ever had.”
—ELIZABETH MCKENZIE, author of The Portable Veblen
“An extraordinary book, telling a story that needs to be told—and heard. It is a story of extreme caregiving, in Lisa Freitag’s apt phrase; it is a story of medical malpractice and shredded social safety nets, an urgent message for our dark and austere political moment; it is also a story of enduring love, and the way that loving someone with a disability can change your world. Like Marianne Leone’s Knowing Jesse, this bracingly unsentimental book is moving, illuminating, and deeply rewarding.”
—MICHAEL BÉRUBÉ, author of Life as Jamie Knows It
“Gabbard describes with intelligence, knowledge, and feeling life with his profoundly disabled son, August. . . . A must-read for anyone interested in life’s challenges and how complexly these are met and understood.”
—LENNARD DAVIS, author of My Sense of Silence
“Gabbard deftly explores the fraught, overlapping territories of caregiving, parenting, disability, and medicine. Loving and unsentimental, the book—despite its weighty subject matter—has a kind of lightness, a hard-won calm. Gabbard is the scholar of his own joys and despairs, both passionate and dispassionate at once, and in this retrospective . . . he finds insight into himself, his family, and what it means to be human.”
—GEORGE ESTREICH, author of The Shape of the Eye
“While investigating his son’s traumatic birth, a father finds not only meaning but also joy in the profoundly disabled life that followed. This book movingly reconfigures questions of human worth and care, and it envisions a different role for medicine in the field of disability. Less elegy . . . than encomium, A Life Beyond Reason invites you to bask in its heartening warmth.”
—RALPH JAMES SAVARESE, author of Reasonable People
“A compelling chronicle of one father’s relentless quest to understand the circumstances around his son’s ‘catastrophic’ birth and ‘hospital-acquired disability.’ Gabbard details the toll of his family’s journey—from the harrowing, Kafkaesque foray into the ‘bowels of American medicine’ to unflinching, sometimes poignant, and often humorous scenes of caring for the boy, who becomes the North Star by which Gabbard grows as a person and as a father. This insightful account is offered in that very spirit—a fitting tribute to August’s short but meaningful life—inviting the reader to ask ‘what is personhood?’ and to understand that we each have our ‘own particular way of being in the world’ and ‘a right to remain’ in it.”
—LEZA LOWITZ, author of Up from the Sea
“Chris Gabbard’s story of his son August’s life will leave you thinking about fatherhood, modern medicine, philosophy, and the very definition of being alive and human.”
—MARK WOODS, author of Lassoing the Sun
“Gabbard is a detective confronting the most wrenching of all mysteries as he attempts to make sense of the chain of medical errors and misjudgments that caused his son, August, to be born with profound disabilities. . . . Gabbard also writes with wit and humility about how caring for August prompted him to reexamine his deepest assumptions about the value and purpose of a human life. This book should be required reading for parents, caregivers, teachers and doctors.”
—RACHEL ADAMS, author of Raising Henry
“This profound and profoundly moving book testifies to the soul-shaking power of unconditional love, which transforms a tragedy into a life to be treasured.”
—MARK OSTEEN, author of One of Us
For Harriet McBryde Johnson
(1957–2008),
who gave me ideas
One doctor makes work for another.
—ENGLISH PROVERB
AUTHOR’S NOTE
I HAVE TRIED TO TELL THIS STORY AS ACCURATELY as possible. In most instances, names or identifying details about individuals have been altered to protect the identities of the parties involved. Names of medical institutions and a medical device manufacturer (and its products) have been changed. With the exception of Dr. Munodi, there are no composite characters. I have attempted to stay true to what people said and did, but all memoirs are by nature imperfect. They are so because, even if a memoirist is writing with the best of intentions, truth—when it is complicated, subjective, based on memory, and put into words—cannot be empirically accurate. Despite these drawbacks, I have written my son’s story so that it will be preserved. If I didn’t put it down on paper, it would be as though these events had never occurred.
I
“MY WIFE’S READY TO GIVE BIRTH,” I SAID MEEKLY. “Where are the doctors?”
On the other side of the high counter at the nurses’ station, a middle-aged blond woman was standing and gazing at a computer screen. When I approached, she looked up and said, “May I help you?” The clock on the wall behind her read 3:23. It was the morning of March 5.
It was nearly spring, in a more innocent time. At the close of trading that day the NASDAQ would reach halfway to its dot-com peak. I was still using a PalmPilot. Everyone was switching from AltaVista to Google. In three months Napster would launch, in five months Blogger. In nine months we’d be partying like it was 1999, which it actually already was, not to mention freaking out about Y2K. But the world was about to change. In eighteen months there would be dot-com, dot-shit, dot-gone. And in thirty months the Twin Towers would fall.
But for now, from San Francisco and Cupertino to the Silicon gulches, canyons, flats, and knolls across the nation, visions of a glorious high-tech future and the wealth it would create danced in people’s heads. Nothing but good could come from the technology revolution. Many in the Bay Area and beyond dreamed this dream.
The nurse looked up briefly. “Everyone’s giving birth,” she replied. Fecundity evidently wasn’t confined to the stock market.
“Will the doctors be coming soon?”
“They’re very busy.”
“Oh, I’m sure they are,” I said, apologetically. “I wouldn’t want to trouble them. But I just want them to know that my wife is ready.”
“Ready?”
“To give birth,” I said, clarifying.
She looked at me quizzically. “It depends on what you mean by ready.” Deciding not to debate the matter further, she continued, “I’ll let them know. They’ll be along. Don’t worry.”
Since she didn’t ask me which doctors were ours or even who I was, I continued: “Dr. Latchesik is the attending physician. Dr. Atropski is the resident. I’m Gabbard. My wife is Chazan. We’re in suite 1524.”
She looked up again. “They’ll come when they can.” Then, giving me an encouraging wink before returning to her screen, she added “They’ll get that baby out in no time.”
I left the nurses’ station and began looking for someone, anyone, to draw attention to our situation. I really wanted to find a doctor. In four months, I would become one myself. But I wasn’t going to become that kind of doctor. I was just finishing my doctoral study at Stanford, focusing on the British literature of the Enlightenment, and getting ready to look for a teaching job. Of all the advice one of my dissertation advisors gave me, this was the best: “Never reserve a table at a restaurant in the name of Dr. Gabbard. You may find yourself in an embarrassing situation.” What he meant was, if somebody were to go into cardiac arrest, it wouldn’t help much to be a doctor of the epistolary novel.
The epistolary novel—fiction consisting of collections of letters—was a mainstay of the Enlightenment. This was not the enlightenment of the Buddha but the European Enlightenment of the eighteenth century, the movement that ushered in our modern, globalized world. I studied it in addition to the novel. Graduate students writing their dissertations, as I was doing during that period of my life, often become obsessed with their subjects. I tended to frame everything around me in terms of the Enlightenment and viewed all forms of progress as its legacy. In other words, I saw modern times as an extension of the Enlightenment. Think of the voice of Rod Serling of The Twilight Zone saying, “Imagine, if you will, a world in which the Enlightenment never ended.”
Nothing epitomized the Enlightenment’s lingering influence more than American medicine. This institution was the pinnacle of progress, a field where the application of human reason operated in its purest and most practical form. The Baconian empirical method incarnate, it had evolved exponentially over the preceding two centuries: anesthesia, penicillin, polio vaccines, laparoscopic surgery, mapping of the human genome, and progress against cancer. Birth had been made easier: In 1821 the Vicomte de Kergaradec was the first practitioner to recommend assessing fetal heart sounds for diagnostic purposes. And in 1853 William John Little was the first to argue that cerebral palsy stemmed from a lack of oxygen at birth. Given the centuries of linear progress and exponential medical advancement, no problem should arise regarding the simple matter of delivering a baby.
The trouble was, a problem had come up, but no one seemed to be available to deal with it. I turned corners, walking up one corridor of the fifteenth floor, where the maternity ward was located, and down another. The corridors were empty, yet the walls hummed with life. No doctor, nurse, or aide crossed my path, so I gave up the search. I had that feeling you get when you can’t find your car keys. I headed back to the delivery suite, where Ilene and our friend Joanne were waiting. When I walked back into the suite, it was 3:25 a.m., and the only people there were Ilene and Joanne.
Thirty-nine hours earlier, on March 3, Joanne had made a comically grand entrance. She had barged into the birth suite exuberantly roaring “Whoopee!” and immediately followed this up with an even more exclamatory “CHILDBIRTH!” Midday Wednesday, Ilene and I were still fresh and able to laugh, having arrived just a few hours earlier.
Joanne Sasaki was a few years younger than Ilene and worked with her many floors below at Loma Prieta Medical Center (a pseudonym). Like Ilene, she was a clinical professor of physical therapy. Joanne had short black hair, obsidian eyes, and a mischievous grin. She was Nisei. When dressed in her professional attire, she had a lot of tattoos that didn’t show. She called Ilene Crunchy and me Cowboy.
Joanne was a hipster from our irony-rich neighborhood, our enclave of cheeky bohemian iconoclasts. She loved to talk about the internal workings of the body. She did this in ways that were so spiced with graphic detail that they made one feel a little queasy. One could be eating burritos with her, and she would launch into an anatomy lesson about the bowels, urinary tract, intestines, kidney, liver, or lungs. For this routine she used a deadpan voice, stating in an expressionless monotone all of the things that could go wrong with your body. This was a variation on “The worms crawl in, the worms crawl out,” except that these were scary stories about our still-living flesh. It was as if she were taking the content of a medical textbook on pathology and turning it into material for horror stories to be told in the dark around a campfire. She could be a riot.
We lived in a time in which flippancy reigned. We approached the world with a jokey, mordant knowingness. This was another part of the innocence of the era—our smug assumption that nothing really serious could ever go wrong. We were living “with a mark on the door,” as Ian Curtis of Joy Division had sung in “Passover,” insulated from life’s catastrophes, or so we thought. On top of everything else, we were completely unashamed of being silly. Our story at this juncture could have been titled, “What to Disrespect When You’re Disrespecting.”
“Welcome to our penthouse,” Ilene said in response to Joanne’s “CHILDBIRTH!” greeting.
“Hey, Crunchy,” Joanne said, eyeing the fetal heart monitor. “I’ve a feeling we’re not in Kansas anymore.”
“I don’t think I’ve ever been in Kansas,” said Ilene.
Turning to me, she said in her faux Southern accent, “Hey, Cowboy, what’s shakin’?”
“Not much,” I said nonchalantly. “Just hanging out in our VIP birth suite. Is this cool or what?”
“Oh, man! It’s huge!” Joanne exclaimed. “And look at that view!” Enormous windows made up two of the suite’s four walls, and through them we could enjoy the bright expanse of downtown San Francisco in the noontime sun.
“It’s—,” Ilene started.
“Ginormous!” Joanne broke in. “It’s almost as good a view as the one from Twin Peaks!”
We all paused a moment to take in the panorama as though it were a painting by Hokusai. A bright, hilly, street-strewn world presented itself. To the northeast, the great buildings of the city’s downtown glistened like the white cliffs of Dover. In their midst stood the Darth Vader profile of the Embarcadero Center and the arms-akimbo Transamerica Pyramid. Beyond the skyscrapers were the cobalt blue of the San Pablo Bay and the gunmetal gray of the Bay Bridge. To the north, the top of one of the Golden Gate Bridge’s reddish towers peeked roguishly over the crest of a distant hill.
“It’s
a room with a view,” Ilene said from her reclining position.
“No,” I quipped, “it’s a womb with a view.”
The bad joke provoked groans.
A day passed, and much more time would pass before we would see the sun again. It had last set at 6:06 p.m. on Thursday, March 4. We had not watched it sink into the Pacific. To have seen that, we would have had to walk across the suite, press our right cheeks tightly against the glass, and peer westward over the full length of Golden Gate Park. Too preoccupied, we had instead settled for looking to the northeast. The downtown buildings had changed like chameleons from blazingly bright to burnished gold and finally to crepuscular gray. As the natural light had gone down, the city lights had come up. The buildings had soon glowed like beacons. And in the wee hours of Friday morning, they had continued to gleam, and a gossamer of streetlights had spread across the residential neighborhoods below. At 2:41 a.m., a gibbous waning moon had passed the meridian. But after that, over the next hour, the stunning cityscape had faded to black. When the lights of the city had completely gone out, the delivery suite’s big glass windows had begun shooting back our reflections, as though we ourselves had become the spectacle.
Ilene and I started as a couple on the morning of January 15, 1991. We met in a San Francisco café called Tart to Tart. It’s a dump now, but back in the day this place in the Inner Sunset was newly opened and smelled of wild strawberries. The Muni’s noisy N Judah line streetcar ran outside the café’s windows. At the time I was just finishing my master’s degree, and I looked up from my books, papers, and espresso to observe a beautiful woman purchasing a latte.
Sequestered as I had been in Catholic schools, I had not met any Jews prior to my first year in college. But ever since then I had been particularly drawn to Jewish women. She was five foot three and had an hourglass figure, cute sexy walk, brown eyes, and curly dark brown hair tumbling below her shoulders. Her face was like that of a subject in a Charles Landelle painting. She carried her drink from the counter to a table on the far side of the café. Intrigued, I got up and walked over and said, “Are you going to work?”
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