|Photo from A Life Beyond Reason's Facebook page. I do not own this image.|
I have just finished Chris Gabbard's book, A Life Beyond Reason: A Father's Memoir (2019), and I am absolutely devastated. Gabbard describes the birth, life, and death of his son, August, and how August's impairments and disabilities changed Gabbard's outlook on everything from fatherhood to living with a disability to modern medical science to the Enlightenment to his belief in God (or initial lack thereof). While I found the writing somewhat thin at times--perhaps because it is intended for a general audience rather than literature professors such as himself--Gabbard tells August's tale, which begins and ends with medical malpractice, through his perspective as an atheist and an intellectual, with flashbacks to explain how he came to hold various beliefs. A birth injury, for which Chris and Ilene never successfully sued, left August with cerebral palsy and spastic quadriplegia. In his father's eyes this made August "monstrous" in the medieval sense of inspiring awe and (eventually) connection with the divine. In the eyes of many others, unfortunately, it made him "monstrous" in the Enlightenment sense of defying nature, to the point at which some people could not bear to even look at August.
Perhaps most curious (or frustrating) to me as a medical provider and one who wants to work with the CP population is Gabbard's habit of not naming names--hospitals, doctors, and especially the medical device company that made the intrathecal baclofen pump that was promised to make everything easier but finally broke both August and his father's faith in medicine. I assume this was a legal recommendation. In addition, Gabbard spends a considerable part of this short and effective book rehashing the electronic fetal monitoring (EMF) of August's birth, which indicated fetal distress but was dismissed by overworked and/or overly optimistic birth attendants. But he never comes out and says that retrospective studies have shown that increased fetal monitoring has increased the rate of Cesarean sections to 33% of all births but has not changed rates of cerebral palsy (1:500 live births). Perhaps as much as 70% of CP comes from prenatal causes. Nevertheless, after two nonreassuring fetal stress tests, 39 hours of labor, and 12 days post-dates, maybe a Cesarean section would have prevented (more) damage. We will never know. It was more optimistic doctors (who may have had ulterior, career-minded reasons) who talked Chris and Ilene into implanting an intrathecal baclofen pump, although oral baclofen and Botox injections had not yet failed for August. Thus began his years-long death spiral of complications that ended abruptly with overwhelming pneumonia.
While Gabbard has grieved and will grieve for a lifetime over all this, I am still raw just from reading about it. What Gabbard wants us to know is that he is not sorry to have had the exquisite pleasure and pain of having been August's primary caregiver: waking him in the morning, bathing, changing diapers and clothes, hand-feeding, transferring from bed to floor to wheelchair to stander, and tucking him in at night. The two of them enjoyed each other, and August helped Gabbard realize that the high-intellectual tenets of his youth--namely Socrates' dictum that "an unexamined life is not worth living"--was a farce. Contra John Locke, the fact that August and Chris and Ilene and Clio and all the college students they hired as caregivers lived interdependent lives proved August's humanity. Along the way, Gabbard provides light disability theory and reviews a veritable who's-who of secondary literature on parenting a child with a disability and on modern medical practice.
I can recommend this book to a wide variety of readers, from curious laypersons to self-interested caregivers, and from pre-health-professional college students to practitioners in fields such as pediatrics, rehab medicine, and all the therapies.
Editor's Note: The book author is a colleague of an old friend from graduate school. I don't think this biases my judgment but does make me grateful I found out about the book so soon after publication!