Gabbard - A life beyond reason: a fathers memoir

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, Gabbards 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 Deaths Door and coauthor of The Madwoman in the Attic

The book is STUNNING. So eloquent and full of wisdomand a certain tragicomic humor. I loved it.... The moral force of it is unquestionableso 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 beliefsyou will want to read this book. If you have been misjudged, mistreated, misdiagnosed by the medical establishmentyou will want to read this book. If you have been a caregiver for someone with disabilitiesyou will want to read this book. But most of all, if you have loved a child beyond measure, beyond compareyou must read this book. Chris Gabbard takes us along on his familys 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

Its hard to speak highly enough about the unforgettable book Chris Gabbard has written about his disabled sons life and times and the medical industrial complex that tested Gabbards 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 Ive ever had.

ELIZABETH MCKENZIE , author of The Portable Veblen

An extraordinary book, telling a story that needs to be toldand heard. It is a story of extreme caregiving, in Lisa Freitags 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 Leones Knowing Jesse, this bracingly unsentimental book is moving, illuminating, and deeply rewarding.

MICHAEL BRUB , 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 lifes 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 bookdespite its weighty subject matterhas 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 sons 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 fathers relentless quest to understand the circumstances around his sons catastrophic birth and hospital-acquired disability. Gabbard details the toll of his familys journeyfrom 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 spirita fitting tribute to Augusts short but meaningful lifeinviting 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 Gabbards story of his son Augusts 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

(19572008),

who gave me ideas

ENGLISH PROVERB

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, truthwhen it is complicated, subjective, based on memory, and put into wordscannot be empirically accurate. Despite these drawbacks, I have written my sons story so that it will be preserved. If I didnt put it down on paper, it would be as though these events had never occurred.

MY WIFES 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 wed 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