A guide to the memoir

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First 2 chapters of A Life Beyond Reason:

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A GUIDE IN THE AUTHOR’S WORDS

Our son, August, was born in 1999 with significant impairments. The most serious of his diagnoses was hypoxic ischemic encephalopathy or H.I.E.—a lack of blood and oxygen before or during his delivery, causing severe brain damage. My wife Ilene and I named him August, which means “esteemed” or “venerable.”

Despite his bad start, August was a blithe spirit. I don’t know how to account for his happiness except to attribute it to the indomitable exuberance of youth.

Ilene’s pregnancy had been uneventful, but the birth itself was disastrous. Afterward, no one would tell us what went wrong. Ilene and I encountered a wall of silence at the University of California, San Francisco (UCSF), the hospital where he was born. UCSF is one of the world’s leading teaching hospitals.

On account of his catastrophic birth, diagnoses and labels for chronic and disabling conditions became the small smooth stones on a string of worry beads: cerebral palsy, spastic quadriplegia, profound mental retardation, cortical visual impairment, microcephaly, seizure disorder, osteopenia—and the list went on.

What did these terms mean? Spastic quadriplegia meant cerebral palsy paralyzed almost all of his body. Profoundly cognitively impaired meant, among other things, that he was nonverbal. Cortical blindness meant his cortex could not process the images coming from the optic nerve. Microcephaly meant that his head would forever be far smaller than it should have been. Seizure disorder meant . . . well, you get the picture.

What did these conditions mean in terms of practical life? He was incontinent: he would forever wear a diaper. He had enough brain function to be able to swallow, and this meant he could take food and drink by mouth. But he could not use his arms, so Ilene and I had to deliver every spoonful of food and sip of liquid to his lips. We could have had a feeding tube implanted (a G-tube) and saved ourselves the trouble, but he so loved to eat that we did not want to deny him this pleasure.

When we were feeding him, he could not just sit in a chair the way that a typically developing child would. He needed upper trunk support, so he had to be secured in his wheelchair with straps holding his shoulders and chest in place. Propped upright, his head lolled, falling forward and backward: the muscles in his neck never developed properly. He also drooled, and this occurred because the spasticity affecting his mouth prevented him from being able to swallow his saliva efficiently. When he was lying on the floor, he was unable to crawl, scoot around, hold himself up, roll over, or even touch his toes. If someone were to put him in one spot and leave him, he would be found in the same location an hour later, give or take a few inches.

Thus began a fourteen-year saga of what Michael Bérubé calls “extreme caregiving.” But despite what “extreme caregiving” required, I never felt, or never felt for long, that taking care of August was pointless, for despite the troubled state of his bodymind, he was a jocund, jolly little fellow, the most cheerful person you can imagine, a munchkin delightful to be with.

He died in 2013 as a delayed result of the way he was delivered. Some of our friends mistakenly assumed that his death brought great relief for Ilene and me. It is true that attending to a boy who couldn’t do anything for himself had made the days hectic. Such caregiving required round-the-clock attention and meticulous tending and planning. But, despite the difficulty, every day she and I had sallied forth with a sense of purpose. We never questioned what was important because we knew. Over time, the caregiving, a deceptively rewarding practice, had become deeply entrenched in our psyches and allowed bonds more intimate and intense to develop than those between most parents and their typically developing children. To care for a child dependent in every way, day after day for many years, is to build up an emotional communion beyond the average person’s comprehension. In every possible activity, we had to serve as our son’s eyes, hands, and feet. Caregiving was taxing, time-consuming, and exhausting; a laborious, never-ending responsibility; an undertaking that was emotionally, physically, and financially draining. Yet it was also a tremendous event, a peak experience, the defining moment of our lives. And so we grieved for its loss as well as for the loss of our child.

Everything Ilene and I know today in 2021 about August’s delivery was not apparent to us in 1999, the year he came into our lives or even for years afterward. In fact, it took us sixteen years to piece together the “never event” that occurred in the birth suite. To put it another way, we solved the mystery of what happened at his birth two years after his death, and this is one of the stories I tell in A Life Beyond Reason.

My son’s experience did not break my belief in American medicine so much as end my blind faith in it. Because of August and my experience with him, I 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. And these too are stories I tell in A Life Beyond Reason.

The most important lesson I learned in the process of writing the book is that it isn’t the unexamined life that is not worth living, as Socrates supposedly claimed, but the life without love.

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