Enlightenment scholar Chris Gabbard used to believe in Socrates’ philosophy that “the unexamined life is not worth living.” All that changed when his son, August, was born. August was born with a severe traumatic brain injury as a likely result of a medical error and lived as a spastic quadriplegic who was cortically blind, profoundly cognitively impaired, and nonverbal. But he was a happy child and, during his fourteen years of life, opened up Gabbard’s capacity to love. Gabbard also experienced a philosophical transformation. This excerpt from Gabbard’s memoir, A Life Beyond Reason, will challenge anyone to reexamine their beliefs about who is deserving of humanity.
August’s blithe pterodactyl shrieks mingled with the sounds I heard when dropping him off at the Mt. Herman Exceptional Student Center. each morning, I would drive six miles northwest on I-95, crossing the fuller-Warren bridge spanning the St. Johns river and skirting the western edge of downtown. Just off eighth Street, it sat on the opposite side of I-95 from UF Health Shands Hospital. once parked, I would wheel him in the front door and sign him in with Miss Beverly, the front-desk secretary. It was a short walk from there to his classroom.
The first day, I was overwhelmed to see so many medically fragile children assembled in one place. The student population was about 160, and a number of them had tracheotomies, feeding tubes, and oxygen tanks, and lived with severe cognitive impairment, cerebral palsy, blindness, and other conditions. Three full-time nurses had to be on the grounds to attend to their medical needs, and they were never idle. Every year, one or two students died—sometimes more—from natural causes, always at home, never at the school. That first day I found not just the sight but also the soundscape distressing, with its cacophony of idiosyncratic noises, the screeching and squawking. That our son would be included in this population was devastating. My heart sank.
This feeling didn’t last, though. I soon settled in and, before I knew it, was seeing the world anew. The squawking and screeching, I quickly learned, were cheerful sounds. Despite their problems, these were kids just being kids, doing silly kid things. Mt. Herman turned out to be a wonderful school for August. Its teachers and administrators showed good morale and strove to do excellent work. The teachers who couldn’t handle the situation quickly transferred out, while the ones who stayed became deeply committed to serving the students.
Many of Mt. Herman’s teachers remained even though they were penalized for choosing to work in this school. No way existed for them to earn the bonus that Florida rewarded its teachers whose students showed sufficient progress according to certain metrics. They remained because they were dedicated to the school’s mission. Mark Cashen, the school’s inspirational principal, and the Mt. Herman teachers treated August with dignity and never gave up on him.
Again, my wife, Ilene, and I weaned August off the antiseizure medications, and this time we had far better results. Afterward he experienced only minor and infrequent seizures, ones lasting for up to twenty seconds at most and occurring months and sometimes years apart. Such short and infrequent ones did not threaten his health.
In February 2002 a three-track CD of Winnie the Pooh songs appeared in our house. It had accompanied a diaper promotion. one day I popped it into the CD player. August was on the playroom floor secured onto his tumble forms wedge, a larger one now because he had grown a little bigger. When the music began playing, he threw his head back in a roar of delight. The CD’s opening song was “Winnie the Pooh,” with a lush chorus of voices, and after it finished August settled down. I played the opening track again, wondering what was up, and when the first strains burst forth, he once again threw his head back and chortled so hard he could barely breathe. August loved music! Over the years he developed other favorites. He particularly enjoyed Dan Zane’s “All Around the Kitchen,” Raffi’s “Bananaphone,” the Muppets’ “Life’s a Happy Song,” and Oscar the Grouch’s “I Love Trash.”
August also loved Cocoa, a pony. Riding this small, cream-beige-and-gray horse provided extraordinarily happy moments beginning in March 2002 and continuing for at least four years. Every Monday in the late afternoon (except in winter), I drove him to a large, fenced-in, grassy field now owned by Jacksonville University in the Arlington neighborhood. There, for thirty minutes a week, he underwent hippotherapy with physical therapist Lisa Federico and her volunteers. By this point we had tried myofascial release, acupressure, cranial sacral work, and sensory stimulation (we avoided hyperbaric chambers, which turned out to be of questionable value). At least with hippotherapy, we found something August liked immensely.
“How’s Augie going to ride a horse?” asked his wise pediatrician, Stephen Cohen, when I asked him to sign a form allowing him to participate. August riding a horse would require three people to assist, I told him. One would place a thick four-inch strap with two large handles around August’s middle (a handle would be on each side). Next they would hoist him onto Cocoa’s back. Lisa would take the bridle while two volunteers, one on each side, would walk along and hold onto the handles so that August wouldn’t fall off. The horse’s motion made him giggle, beam, and crow. For thirty minutes, the four humans and the horse would saunter around the field’s fenced perimeter like Chaucerian pilgrims journeying toward a distant shrine.
In late July 2001 August started going to the DLC Nurse & Learn in the Murray Hill neighborhood under the auspices of its early intervention program, of which there were remarkably few in northeast Florida. In March 2002, when he turned three, he “aged out” of early intervention, as is typical for such programs. Just at that time our finances required Ilene to start working again as a physical therapist. It was easy to find a good child-care arrangement for our daughter Clio, but having a kid such as August was like having an elderly parent with Alzheimer’s disease and needing 24-7 care. We had to find coverage for the after-school hours, the days school was not in session, and holiday breaks. Day-care facilities wouldn’t accept him. If you go to IKEA and wheel your severely impaired little boy to its Småland play area, no staff member there is going to let him in. Ilene began looking for a day-care facility, but August was completely shut out. And there was no equivalent to Cynthia Godsoe of the Child Care Law Center to help us. Fortunately for us, the DLC Nurse & Learn was willing to accept children with severe impairments into its regular day-care program.
In the years to come, the DLC was where August would go every day after school and all day during the summers. Whenever August was there, Ilene and I could relax, knowing that he was in caring hands. Amy Buggle, the founder and chief administrator, and her staff treated him with respect and loving attention, recognizing his dignity as a human being. If it had not been for the DLC, Ilene or I would have had to stop working and stay home, and this was something we could not afford to do. The DLC proved to be a great boon because it allowed parents and guardians of children with severe and multiple impairments to continue working.
When August was born and for several years afterward, his condition did little to challenge my belief in reason and progress. I never doubted that, were I to dig down deeply enough and be granted access to all the facts, the question of what had happened to him at his birth could be answered. At first this rationalistic stance served me well, for I remained confident that the world was ultimately explainable. On some level everything still made sense. of course, I still had to wrestle with the reality of August’s physical and mental state. On account of his catastrophic birth he was a spastic quadriplegic (cerebral palsy paralyzed almost all of his body), lived with cortical blindness (the cortex could not process the images coming from the optic nerve), was profoundly cognitively impaired, and was nonverbal. He also was incontinent; he would forever wear a diaper. 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.
Overall, I continued to believe that the unexamined life is not worth living. But blebs of doubt had begun forming in the glass of my worldview, and eventually secure assumptions started to give way to questions for which no answers seemed possible. Why had everything gone wrong at August’s birth? Why was my beautiful boy so impaired? Why was he so deprived of the basics of life? Why had this calamity happened to him? And beyond these questions concerning the past were others about the future: Who would take care of him after Ilene and I died? Most importantly, how would I ever find peace, knowing that terrible things had befallen my boy?
Like a strong wind at my back, the force of these questions began to propel me forward in a new, unexpected direction. I found myself increasingly grasping for something. Were I to miraculously receive all the answers about August’s birth, find the empirical truth, the scientific basis, would this really make a difference? That my boy remained nonverbal, non-ambulatory, visually impaired, and diaper-reliant was a reality I had to face. But science and reason couldn’t help me do that. Because they provided cold comfort, a bigger problem was at hand. I began to suspect that modernity—heir of the Enlightenment—this brave new world, was hollow at the center. There was no there there. It offered nothing but incessant change and vague promises of a better tomorrow.
And so I, the least likely of pilgrims, suddenly found myself embarking on a spiritual journey, that category of narrative that I as a young man had dismissed. My Enlightenment clockwork universe lay shattered on the ground, and I had to ask myself, How did I get here?
About the Author
Chris Gabbard is an associate professor of English at the University of North Florida. He serves on the editorial board of The Journal of Literary and Cultural Disability Studies, and his writing about disability, literature, and the Enlightenment has appeared in numerous academic publications and journals. He lives with his family in Jacksonville, FL. Follow him on Twitter at @Chris_Gabbard and visit his website.