A guide to the memoir
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This is a story about the love between a father and son. It also concerns a medical error, a cover up, a disabled boy, ceaseless caregiving, and spiritual growth.
Chris Gabbard’s first child, a boy, was born in 1999 with significant impairments. The most serious of his diagnoses was hypoxic ischemic encephalopathy (H.I.E.) due to a lack of blood and oxygen before and/or during his delivery, causing severe brain damage. He and his wife Ilene named the new arrival August, which means “esteemed” or “venerable.”
Ilene’s pregnancy had been uneventful, but the birth itself was disastrous. Afterward, no one would tell the couple what went wrong. For more information about this aspect of the story, go to August’s medical & legal story.
Thus began a fourteen-year saga of what Michael Bérubé calls “extreme caregiving.” But despite what “extreme caregiving” required, Gabbard never felt, or never felt for long, that taking care of August was pointless, for, despite the troubled state of his body and mind, he was a jolly little fellow, the most cheerful person anyone could imagine, a munchkin delightful to be with.
August with his sister Clio
Everything the parents know today in 2021 about August’s delivery was not apparent to them in 1999, the year the boy came into their lives or even for years afterward. In fact, it took them sixteen years to piece together the “never event” that occurred in the delivery room. They solved the mystery of what happened at August’s birth two years after his death, and this is one of the stories Gabbard tells in A Life Beyond Reason.
His son’s tragic encounter with the health care system did not break Gabbard’s belief in American medicine so much as end his blind faith in it. Because of August and his experiences with him, Gabbard also began to understand the importance of caregiving, the just demands of the disability rights movement, the politics inherent in both caregiving and disability, and the need for a robust social safety net for all families, but especially for ones caring for significantly impaired children. And these too are stories he tells in A Life Beyond Reason.
However, a more important story the author tells is about his own intellectual and spiritual development. When he was a young man, he believed that loving and wanting love were weaknesses to be overcome by force of will. Only weak-minded people needed love. He also accepted at face value Socrates’ proposition that the unexamined life is not worth living and was an adherent of a Peter Singer-ish utilitarianism.
At the time of August’s birth he didn’t know that the baby would develop into a beguiling little fellow, that the son would elicit great love from him and from many other people, or that, like a spirit guide, a Yaqui shaman, the boy would introduce him to a separate reality. And the father didn’t know that this separate reality was actually the world of my own heart, his capacity to give and receive love.
As a consequence, Gabbard has now come to believe that it is not the unexamined life that is not worth living, but the life without love. How he arrived at this conclusion is the most important story he tells.
August David Chazan-Gabbard, 1999-2013