Devastatingly Beautiful Memoir about Love, Intellect, and Disability

On the left, the cover of the book, A Life Beyond Reason: A Father's Memoir, by Chris Gabbard.
On the right, August smiles at the camera while sitting on his father's lap; his father is smiling at him.
Images from the book's Facebook page.

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!

What Residency Looks Like XLV: Third-Year Bloopers

I've made a tradition of exposing my foibles with an annual blooper list: second year of residency, intern year, medical school parts 1 and 2. Here's the third year of residency, at least what I could remember to write down.

Top 10 Bloopers

10. The night shift I tried to save a disposable cup by using my travel mug with a drink machine and ended up splattering hot cocoa everywhere. It looked like I had violently murdered a chocolate Easter bunny.

9. The time I set my alarm for an extra weekend shift at 6:50am, figuring this would give me a good 40 minutes to wash, dress, pack a lunch, and enjoy some pancakes before heading to the hospital with plenty of time to spare. Except I was supposed to show up no later than 7:00am. Dear Husband happened to be getting up early for church, so he woke me up at 6:30am and then helped me throw some food in a lunchbox just in time for me to run out of of the house at 6:45am. Whelp! I wish I could say that was a lone incident, but two other times I picked up extra weekend shifts, only to lock myself out of the house at 6:30am, only to have to call Dear Husband to wake him up to come let me in to get something I had forgotten (like my car keys).

8. When I diagnosed pelvic inflammatory disease in a woman who had had a hysterectomy.

7. When I accidentally walked into a construction zone because just the day before a consult patient had been on that ward. Even though there was a sign hanging on the door "authorized personnel only." I am so used to being "authorized personnel" that I entered anyway. Oops.

6. The day I let my co-resident go home thirty minutes early at the end of our otherwise quiet night shift, only to be called to a C-section for an unstable baby, parents who wanted to refuse vitamin K, a cold baby, parents who wanted to refuse erythromycin eye ointment, a baby who needed to be transferred to another hospital and could I tell the parents, a baby who needed an ultrasound (at which point one of the on-coming nurses sniped that I should have made sure the baby was already in the triage area, although nobody had ever told me this was my job), and oh by the way, this other one's blood sugar is 29, and no one knows whether the mother is okay with bottle feeding.

5. The first time I trimmed a newborn baby's umbilical cord and splattered blood everywhere, including on the nurse who was helping me.

4. When a patient asked me to rewarm her homemade heating pad of rice in a sock in the microwave for 1:30. She didn't know the setting, so I did it on HIGH--which cooked the rice and burned two holes in the sock. Not only did the floor staff wonder what was burning, but when I returned to the workroom my nightshift colleagues could still smell the smoke on my scrubs.

3. The day I complained when I didn't hear about new admissions all day until the ED attending texted my attending that they hadn't been able to get ahold of me for hours...because I had forgotten to sign in my pager that morning.

2. That night in the adult emergency room when I did a rectal exam on a patient who was concerned that his partner had left a foreign object in the patient's rectum, and then he critiqued me on my technique: "That's why girls aren't allowed back there!"

1. Once while overseeing conscious sedation of a girl in the ED getting her broken arm casted under twilight sleep, I noticed that my vision was starting to black out. While it was uncomfortable to see her arm being manipulated to get both bones back in place, maybe I had locked my knees while leaning over the gurney, or I hadn't snacked enough that night. I told the attending physician, "Jenn, I'm feeling faint." She promptly took over the sedation, sat me in a chair while someone fetched cold OJ, and forbid me to do anything else. Afterwards the Orthopedics resident smugly asked, "First sedation?" "No," I replied. "Second."

Older

Newer

What Residency Looks Like XLIV: DANGER DANGER

Long-time blog-readers may be familiar with my obsession with toilet and bathroom technology. So of course I snapped a picture of this sign next to a commode at the hospital where I was moonlighting.

"DO NOT PUT HAND IN TOILET!"

I could see the utility of posting such a warning in the janitor's closet, but why did they feel the need to tell the average toilet-user not to put their hand(s) in the toilet? Are toilet-induced hand injuries that common? If so, why have I never seen one in either the pediatric or the adult emergency room? The fact that somebody thought a sign was necessary suggests that these flesh-eating toilets are capable of inflicting the kind of the damage that would require an emergency room visit, rather than the kind that you swig a little alcohol, wrap in some gauze, and hope looks better in the morning.

Anyway, in case it needs to be said, keep your appendages out of the bathroom fixtures.


Older

Newer

What Residency Looks Like XLIII: I'd watch that sitcom!

Two strangers become friends while undergoing the wacky hazing ritual that is a medical residency in the United States. Actually, there are two other trainee doctors in their cohort, but one has an evening ED shift and the other is working night shift. Typical that all four couldn't be together to celebrate the end of their third year together. Coming soon: third-year bloopers!

Older

Newer 

What Residency Looks Like XLII: Cool as a Cucumber

Sometimes residency looks like listening to live-streamed medical lectures from your back porch in order to enjoy the beautiful early summer day before working third shift in the pediatric emergency department. DH joined me for lunch and to read a book.

Older

Newer

Next stop: Soggy Bottom

Here's a recipe I wanted to like that didn't quite turn out like the picture in the co-op mailer.

1. Preheat oven to 375F.

2. Grease an 8x8" baking dish with an old butter paper.

3. Mix 2 cups rolled oats and 1/2 cup chopped walnuts in a large bowl.

4. Blend 1 large chopped banana, 2 cups almond (I used cow) milk, 1/2 cup maple syrup, 2 tsp vanilla extract, 2 tsp cinnamon, 1 tsp baking powder, 1/4 tsp salt. 

5. Add 2 tbsp ground flax seeds, if you have them. (I did not.) 

6. Pour over oat-nut mixture and stir thoroughly.

7. Fold in 1/2 cup fresh or frozen blueberries.

8. Spread in pan and bake for 30-35 minutes. 

9. When the bottom is still soggy, bake for another 10 minutes.

10. Give up and just nuke each piece, upside down, before you eat it.

I don't know if almond milk has a lower evaporation point than cow's milk, or if the flax seeds would have significantly soaked up some of the liquid, but this was not as crumbly as I had anticipated. Next time I would use maybe 1 1/2 cups of milk, and maybe a little more maple syrup. The frozen berries had thawed slightly, giving the finished dish a slightly purplish hue.

Editor's note: If you liked this recipe, you might enjoy this other co-op breakfast casserole with apples and maple syrup, or this old German recipe for pearled barley with blueberry compote.

I spy with my nefarious eye

"BWA-hahahhahaha!" boomed the pastor. 

"MWA-heh heh heh heh heh!" I responded, rubbing my hands together.

We were practicing our evil laughs while playing a spirited round of Nefarious during Game Night at church. In addition to trying to take over the world with mutated viruses and talking robots, we practiced other godly virtues like deceiving our neighbors with the card game Spyfall, in which players ask and answer questions while one spy has to try to guess a location (e.g. a bank) before the other characters figure out who the spy is.

The laugh for this game was different, though, as we got out our jitters by cavorting with false bravado after each deal:

"Ha-ha-ha-HA!"

Despite the deluge of rain, a good time was had by all.