Saturday, July 6, 2019

Devastatingly Beautiful Memoir about Love, Intellect, and Disability

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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!

5 comments:

  1. I bought this on the strength of the excerpt you linked to earlier— it strikes me as the atheist’s take on Henri Nouwen. I haven’t read it yet, but this review is encouraging.

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    1. I bought the book based on that excerpt myself. Do let me know what you think after you finish it, please.

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  3. Thank you for this engaged and engaging review. The reviews so far have been positive, but the book has not received one to date that gave meaningful and thoughtful feedback. I am thankful that the book had a reader who dove into it in such a thorough way. I will respond to three points in the review, not in the spirit of challenge but of clarification.

    FIRST, I was aiming for a general audience and so trying to steer clear of theory or anything that would slow down the storytelling process. In doing so I had Michael Bérubé's _Life As We Know It_ in mind. I enjoyed his account. He goes down a lot of rabbit holes that an intellectual would be likely to go down. However, I wanted to avoid such rabbit holes so that my non-Humanities-trained neighbors would keep reading to the end. I wanted to educate them a little bit about problems in both medical delivery and social support systems.

    SECOND, about naming providers, hospitals, etc, the publisher and I went back and forth about this. Ultimately, we decided on discretion. The institutions and device makers have deep pockets and batteries of lawyers. I have no pockets; hence, can't afford a lawyer.

    And THIRD, regarding fetal heart monitors, as "Dr. Hermes" indicates at the end, August may have been having problems before my wife arrived at the hospital for induction, or his problems may have occurred during the delivery. That unnamed hospital, a progressive one, was actively trying to push down the trend line by not resorting to C-sections. Even so, the per diem nurse (the main L & D nurse) at 2:55 a.m. of the morning of the birth pointed out that the heart rate was very low. But her concern was dismissed. Skepticism about monitors was part of it, as so was a desire to avoid a C-section. But I also suspect that they dismissed the nurse’s concern because she was an outsider and because she didn't fit the demographic profile of the other hospital employees. I am not saying that the hospital staff was racist, but she didn’t look like them. To my mind, it was because she was not part of the regular rotation that she did spot something amiss that the others didn’t. That made 2:55 am the moment to act. Consequently, even if August was already having problems leading to CP, he was experiencing distress that worsened his condition.

    My point is not to re-litigate the matter, but to point out that it is possible that more adverse events take place in delivery rooms than medical professionals are willing to acknowledge, or are even aware of themselves. A trip to the Facebook page "Hope for H.I.E." should make a person stop and wonder. Mistakes occur.

    Lastly, one of the things I figured out from this “journey” is that the team approach in medical institutions (while necessary for logistical reasons) allows for culpability to become so spread over a large number of people that no one ultimately is held responsible when things go south. In August’s case, a lot of people made mistakes.

    Okay, that’s enough from me. My response to your review is more long winded than I intended. Most people read my book as a story of a disabled child who dies and are so overcome with the sadness that all they can do is weep. So, I am grateful for your thoughtful, insightful piece and for getting beyond the pathos.

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    1. You are very welcome, Chris! I will tout your book far and wide. I hope it is well read and oft discussed.

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