A guide to the memoir
- August’s medical & legal story / Available for speaking / C.V. / Bio / Contact / Holland-Bloorview Kids Rehab interview
Sample chapter:
Love between a father and son, a medical error, a cover-up, a disabled boy, extreme caregiving, and spiritual transformation.
Chris Gabbard’s first child, a boy, was born in 1999 with significant impairments. The pregnancy of his wife, Ilene, had been uneventful, and all signs pointed to healthy development. However, the birth itself was disastrous. The delivery team missed important signs, and the boy was born unresponsive and had to be resuscitated, a procedure that took a number of minutes. By the time the newborn took his first breath, the damage had been done.
Afterward, no one at the hospital, the University of California, San Francisco Medical Center (UCSF), would tell the couple what went wrong in the delivery room. The medical staff did inform them though of their baby’s diagnoses, the most serious of which was hypoxic ischemic encephalopathy (H.I.E.). H.I.E. results from a lack of blood and oxygen before and/or during his delivery, causing severe brain injury.
For the full account of the birth, go to August’s medical & legal story.
Following the birth, the couple took their severely brain-injured baby home and named him August, which means “esteemed” or “venerable.”
August
Thus began the couple’s fourteen-year saga of what Michael Bérubé calls “extreme caregiving.”
Everything the parents know today in 2022 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.
August with his sister Clio
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 the book.
However, the most important story Gabbard tells concerns his own transformation. When he was a young man, he imagined that loving and wanting love were weaknesses to be overcome by force of will. Only weak-minded people needed love. He attempted to live his life guided by reason and assumed that physical reality is the only reality that matters. He accepted at face value Socrates’ proposition that the unexamined life is not worth living and adhered to a Peter Singer-ish utilitarianism. Piloted by this materialist worldview, he took for granted that the only logical thing a reasonable person could do if burdened with caring for a severely cognitively impaired dependent would be to smother him with a pillow.
Life turned out to be not so simple. Despite the troubled state of his body and mind, August was a jolly little fellow, the most cheerful person anyone could imagine, a munchkin delightful to be with. Realizing that the very idea of terminating his life was not only unacceptable but repugnant, Gabbard ceased trying to live solely according to reason, and this is why he titled the book A Life Beyond Reason.
Photo by Matt Shoshane
It wasn’t that reason didn’t matter anymore but that it wasn’t all that mattered. At the time of August’s birth, Gabbard 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, like 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 his own heart, his capacity to give and receive love.
As a consequence, Gabbard now believes it is not the unexamined life that is not worth living, but the life without love.
August David Chazan-Gabbard, 1999-2013
A Life Beyond Reason 