Book Review: A Life Beyond Reason: A Father's Memoir (Chris Gabbard)
Reviewed by Anne Kaier
August Gabbard, his father's "darling boy," was born unresponsive on March 5, 1999. A medical team brought him back from the dead, high-fiving each other at their success. But the baby was left with severe brain damage. So begins Chris Gabbard's riveting chronicle of his son's story. I read this book straight through, wanting to know at each turn what would happen to August. The boy is charming. His father delights in him and makes it easy for us to share his pleasure. As a toddler, August, who is a spastic quadriplegic, cortically blind, profoundly cognitively impaired and nonverbal, is strapped into a device that lets him be positioned upright. Here is Gabbard's description of pushing August around their apartment. "Think of the Popemobile motoring slowly up a crowd-lines street with the pontiff standing and waving. This was August as I propelled him through the apartment. …August would throw his head around, emitting toddler shrieks of glee and gesticulating drunkenly with his left arm. Humble as these journeys may have been, for him they were Mr. Toad's Wild Ride."
Chris Gabbard is a thoughtful man. One of the many issues he considers in this book is the most profound. What is it to be human? In essence, was August's life, so restricted, such a drain emotionally and financially, worth living? But because Gabbard characterizes his son in scenes such as the happy toddler, any imaginative reader would say, of course his life is worth loving. That's not to say a less cheerful child's life is of less worth. But Gabbard is a canny writer. He makes us love August as he does. August has a definite personality, is an individual—not just a case history. We root for August.
Gabbard, his wife and his boy are in a tough fight. The antagonists are most physicians in the teaching hospitals who care for August and, especially, in Gabbard's telling, medical device manufacturers to whom he gives the pseudonym Hippocrates. In a scene out of Kafka, the sales rep from Hippocrates sits in on a meeting in which an ambitious young physician promotes an implantable infusion pump. To help August's spasticity, the pump would inject a liquid drug directly into August's cerebrospinal fluid. The payoff? August might be able to feed himself, instead of requiring his parents to carefully spoon feed him forever. He might even be able to walk more naturally in an assistive device. After thinking, researching and worrying, Gabbard and his wife agreed to have the pump implanted in August's back. Six surgeries followed until August was fourteen. Gabbard makes a case against the most prominent physicians involved in these procedures. He believes that the university medical center where the work was done was looking to bolster the pump implantation program because, among other reasons, the university could make money on these medical devices which they implanted with a considerable markup. He also speculated that the doctor who promoted the pump to the Gabbards, a university employee, may have been urged to recommend more of them than she might otherwise have wanted to.
Gabbard brings some research to bear on his accusations. For example, he cites an article in Time magazine from 2013 which showed how hospital executives game the system in their billing practices to maximize revenue. Perhaps, Gabbard thinks, they push medical devices which can make a profit for the hospital. However, I think Gabbard's case is considerably weakened because he does not marshal significant evidence to support his speculations and relies on pseudonyms for the manufacturer, the sales rep and the physicians. Doubtless this is for legal reasons, but I remain unconvinced. Gabbard is not an investigative reporter, fair enough. But by the time he wrote this book, perhaps more evidence-based reporting was available. That's not to say he's wrong. The hospital which treated August may well have promoted the pump, which caused significant suffering to the boy and his family, but the underlying thrust of Gabbard's accusations and speculations is emotional. He's angry. Understandably so.
Normally depicted as a reasonable man, Gabbard finally lets off steam in a tense confrontation with the physician who has continued to defend the pump when Gabbard and his wife believe it is bringing August nothing but suffering. Arguing over August's hospital bed in which he is distorted into a shape that reminds his father of a Pterodactyl, Chris Gabbard lets the doctor have it.
"'The pump has been a fucking disaster! I wish we'd never met you…'
This scene acts as a steam valve for Gabbard and for the reader. We are so much on August's side, we too want to scream at the hurts August has suffered and the sheer frustration of, modern medicine's inability to significantly help him.
It takes a certain courage to write a book such as this—about the choices parents make. Someone will always second-guess you or come up with morally superior reasons why you should or should not have done what you did. It's one of the strengths of Gabbard's work that he belies this kind of trolling by involving us in the day to day realities of caring for a kid such as August. The amount of time it took to feed him carefully, the nights Gabbard spent in the hospital with his son, leaving only to teach his classes in English literature and grab a few hours of sleep. The constant financial worries. Because Gabbard was tied to his home and to August, he couldn't go to the kind of academic conferences that would further his career—and help raise his salary, bringing in the money to support August's care.
But I wish Gabbard had enriched his book with more scenes of daily life. He gives us one glimpse into his deeply happy marriage. He and his wife, a physical therapist, stole twenty minutes in a restaurant to celebrate their twentieth wedding anniversary with a glass of champagne and a salad before Gabbard had to go back to be with August in the hospital. It's a funny, charming scene. Most of the time, however, Gabbard keeps his marriage secret. Perhaps that is the way his wife wished it. The book, after all, is subtitled "A Father's Memoir." But the complexities of family life when living with, treating, and making-decisions for a severely disabled child are so powerful, as a reader I wanted the blinkers off. I wanted to see more closely into the heart of things in this family.
One of the ways Gabbard lets us into his innermost thoughts and feelings is through imaginative language. He is, after all, a professor of English. With A Ph.D. from Stanford, Chris Gabbard teaches literature at the University of North Florida. One way he tries to make sense of the situation his family is in is to approach it through the brilliant irrationality of simile and metaphor. For example, when August was first born, Gabbard says he and his wife "felt intense shock, guilt, grief, depression, and anger." All this is normal. He could have left it at that. But he goes on to explain "we didn't progress from one of these feelings to the next as with Elizabeth Kubler-Ross's stages of grief. Rather, like the horses of a carousel, these emotions kept going around and around." What a perfectly apt way to put it. He lets us share their intense emotional ups and downs in language that evokes children on a merry-go-round. August, with his mobility issues, may not ride on a carousel, but you can tell his father evokes that happy and carefree image while telling us about the parents' pain. Gabbard knows his son as a happy child and the father describes August's pure joy when he is rolled outside in his wheelchair. As he grew older, August gets into an assistive device that lets him move up and down their driveway, full of the joy of it. "The spasticity of his cerebral palsy made his leg and head thrusts wildly ungainly. His was a jerky, staccato motion. … Up until his eleventh year he strode up and down the driveway like a tin soldier needing oil." Again, it's a wonderful comparison. Gabbard gets at the joy and determination of August's movements and finds a delightful humor in the entire situation. In some ways, the family is indeed living in Oz.
Perhaps Chris Gabbard will revisit the material of this affecting memoir again, in the future. Perhaps he will find himself able to give us a fuller, richer picture of the day to day difficulties, emotions, and delights of raising a child like August. Perhaps he will be able to name names of the medical device manufacturers and physicians and back up his speculations of immoral practices with the kind of extensive, hard evidence that will make accusations such as his impossible to ignore—and open to legislative action.
In the meantime, A Life Beyond Reason is a thoughtful, gripping read—often funny, occasionally very angry, thank God—and full of love for a very appealing son.
Title: A Life Beyond Reason: A Father's Memoir