A Life Beyond Reason: A Father’s Memoir
“A poignant, powerfully written story of a radically mismanaged delivery at a major medical institution as well as 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 co-author of The Madwoman in the Attic
Before becoming a father, Chris Gabbard was a fast-track academic finishing his doctoral dissertation at Stanford. A disciple of Enlightenment thinkers, he was a devotee of reason, believed in the reliability of science, and lived by the dictum that an unexamined life is not worth living. But, despite his faith in modern medicine, the very science he touted as nearly infallible fails him. Gabbard’s son, August, is born with severe brain damage, likely the result of medical error and begins his life as a spastic quadriplegic who was cortically blind, profoundly cognitively impaired, and nonverbal.
While Gabbard tries to uncover what went wrong during the birth, he adjusts to his new role raising a child with multiple disabilities and begins to rethink his commitment to Enlightenment thinkers—who would have concluded that his son was doomed to a life of suffering. Amid fourteen years of doctor’s visits and hospitalizations, negotiations with Medicaid, and the mounting debt that characterizes a new life of intense caregiving, the monumental truths of Gabbard’s idols give way to a new understanding of his son as a rambunctious, joyous human being, with his own preferences, quirks, and sense of humor—undeniably alive and deserving of every moment.
Incandescent and unsentimental, A Life Beyond Reason chronicles Gabbard’s excruciating and joyous transformation from a scholar obsessed with the definition of the human to a fearful new parent of a child with a disability to a fierce advocate for his son’s right to live.
The events in this account take place in San Francisco and Jacksonville, Florida, particularly in the San Marco neighborhood.
from Kirkus Reviews
A professor steeped in the literature of the Enlightenment has his core beliefs about science, reason, and progress altered when he faces the reality of raising a son with severe brain damage. In his debut memoir, Gabbard (English/Univ. of North Florida), who serves on the editorial board of the Journal of Literary and Cultural Disability Studies, chronicles the challenges and joys of raising his son, August, who was born with profound impairments, both cognitive and physical: a spastic quadriplegic, legally blind, incontinent, unable to speak, and unable to feed himself. The author describes his son’s birth and the questions about decisions made in the delivery room. Gabbard is highly detailed in his discussions of his routine as daily caretaker and the ups and downs of August’s life, which included many surgeries and long hospitalizations. While making clear the enormous demands in both time and money, he is also transparent in his rendering of his deep, abiding love for his son. Once a devotee of the concept that our intelligence is what makes us human and that the unexamined life is not worth living, the author embraced the belief that love is what makes life worth living. To curious strangers, some of whom viewed August with wariness, Gabbard’s frequent reply—”This is my beloved son, in whom I am well pleased”—speaks volumes. The scenes with various doctors involved in August’s care reveal some of the limitations of the medical profession when faced with such physical and mental impairments, but Gabbard is not writing an exposé. This is both a memoir of a child’s short life and a father’s journey from an academic who thought that love was a weakness to a thoughtful, questioning adult who values the capacity to give and receive love. Parents and caregivers will find plenty of inspiration in these moving, empathetic pages.
“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 and a regular columnist for the Florida Times Union
“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
“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
“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
“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 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
“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 Fables and Futures and The Shape of an Eye
“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
“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—the son eventually dies–than encomium, A Life Beyond Reason invites you to bask in its heartening warmth. ”—Ralph James Savarese, author of See It Feelingly and 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, Kafka-esque 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
“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