I sat down on the pool’s wooden deck and reclined against the surrounding chain-link fence, feeling its sun-warmed metal wires imprint their rhomboid pattern across my bare shoulders as I supervised the campers splashing in the shallow water. The mid-July atmosphere lay heavy and still over the dusty campground, while far overhead a small airplane with red wings droned lazily across the sky. Surrounded by empty fields of tallgrass that had turned brittle in the summer heat, the camp pool was an oasis. A knee laceration suffered the previous day during a particularly competitive volleyball tournament with the other camp counselors had restricted me to the poolside, and I could only watch—and perspire—as the dozens of campers and most of the staff dawdled away the afternoon in refreshing, aquatic amusements. “Shouldn’t really feel sorry for myself, though,” I murmured as I gazed upon the assortment of wheelchairs, crutches, and leg braces that littered the deck.
Six weeks earlier, I had noticed on a bulletin board at my medical school a recruitment flier calling for volunteers for a youth camp put on by the Oklahoma chapter of the Muscular Dystrophy Association. According to the flier, the camp takes place every summer, and any child in the state who has muscular dystrophy can attend, free of charge. Because of the fragile health of the campers, the organization prefers to have medically trained individuals serve as camp counselors. This year’s session fell perfectly into the narrow slot of vacation days that I had available before the start of my third year of clinical coursework; and using that time to mentor disabled youth seemed a somewhat nobler endeavor than my original plan of backpacking across central Europe. I emailed the contact person listed on the flier, and after completing an impressively onerous rigmarole of paperwork, liability waivers, and background checks, I received my counselor welcome packet—which, tellingly, included a complimentary 120 ounce water bottle and instructions to pack “enough mosquito repellant to fumigate an entire village.” Because I had been assigned to lead the preadolescent boys cabin, ages 7-12, my packet also contained a yellow sticky-note with the anonymous, handwritten message, “Heaven help you.”
Back at the poolside, acrid chlorine vapors mixed in the air with the campers’ excited yelps and laughter and with raucous country music blaring from the cheap, crackly speakers nailed to the lifeguard hut. One of my campers, a seven-year-old boy named Asher, climbed out of the water and tottered over to me. Asher’s lithe little frame sported an overstuffed, moldy orange life-vest and neon green swim trunks; his smiling, freckled face shone with merriment and with streaks of white sunblock that he had been too impatient to rub in fully.
“Couns’r Ty, can I go on the divin’ board?” he asked politely, though the gleam in his eyes told me he intended to go with or without my permission.
“Sure, Ash, just make sure the lifeguard says it’s okay. I’ll watch from here.”
“Aw’right!” he whooped, revealing a white smile full of gaps from recent baby teeth losses.
I watched as Asher ambled along the deck towards the deep end of the pool. In his barely containable excitement, he quickened his pace to an open jog, drawing the shrill warning of lifeguards’ whistles. He grinned sheepishly and reduced his speed just a notch. To a casual observer, he seemed every bit a normal, vigorous young boy at summer camp. Subtle findings—enlarged calf muscles and a tiptoed gait—hinted at his grave truth.
Muscular dystrophy refers to a family of genetic diseases caused by mutations in genes related to muscle cell structure and/or function. They vary widely in severity, epidemiologic distribution, and exact pathophysiologic mechanisms but share a common symptomatology: progressive weakness and degradation of proximal, large muscle groups. In milder subtypes, the clinical consequences are relatively benign, consisting of difficulty climbing stairs, easy fatigability, etc., and do not substantially affect a patient’s life expectancy or quality of life. In contrast, the most severe form, Duchenne muscular dystrophy, ranks as possibly the most tragic of the thousands of diseases I’ve studied in medical school. Because of the specific chromosome carrying the mutated gene, it affects males almost exclusively, but does not manifest immediately after birth. The boys seem to develop normally, and parents believe they have a healthy, happy young son. That is, until he starts to lag behind his peers when running on the playground at preschool; until he begins to stumble and fall more frequently than can be explained by usual boyhood clumsiness; until they take him to their pediatrician, who refers them to a neurologist, who tells them the terrible news. Their precious little boy has an incurable disease in which the muscles of his arms, legs, heart, and diaphragm will steadily and inexorably disintegrate, replaced by useless fibrous tissue. In his early childhood, his leg muscles will swell noticeably and force him to walk on his tiptoes; by age 8 or 9, he’ll require some sort of ambulatory assist device; before puberty, he’ll be in a wheelchair; by his mid-teens, he’ll likely need a ventilator; and by 20, he’ll die from heart failure and/or repeated respiratory infections. Throughout, his cognition will remain unimpaired, leaving him fully cognizant of his condition, its relentless course, and its ultimate conclusion.
Ash suddenly tripped on a loose plank projecting from the deck. He crashed forward onto his arms and chest, and lay prone for a moment to recover. Among the very few things to upset Asher was receiving immediate and overly sentimental aid from people who, presuming him frail and incapable, rushed in to save him from any stumble; he was fiercely independent. Having learned this lesson firsthand on the first day of camp, I made no move to help him. Instead, I watched as he slowly and methodically raised himself back to his feet: placing his hands far in front of his body and steadying his legs widely beneath him, creating a sort of tripod, and then walking his hands backwards along the ground and up his legs to push his trunk into a vertical position. “My god…” I whispered. It was the Gowers maneuver, a classic sign of Duchenne muscular dystrophy. I had only ever seen it in the safe, sterile pages of neurology textbooks; now it was here, tangible, in the copper-tan body of a cheerful and intelligent young lad whose continual joking, pranks, and unfettered vivacity filled our cabin nightly with laughter. Behind dark sunglasses, tears welled in my eyes. A minute change in one or two letters among the six billion characters in Asher’s DNA had condemned his bubbly step to a premature end, while the rest of us blithely walk on.
I looked from Asher to the other campers. They shared his fate. “Damn it,” I muttered with a cold vehemence that shook my chest, “God damn it.” Can’t scientists hurry up and cure this disease? Fuck it, why does the disease even happen? If a loving, omnipotent god really does exist, I’d like to hear the sick bastard’s reasons for doing this to innocent children. The tears flowed freely now, merging with the sweat on my face to produce a briny mixture that ran across my lips.
Asher arrived at the diving board. His left shoulder was slightly abraded from the earlier tumble. With the help of a lifeguard, he scrabbled out onto the white platform and, grinning and giggling, surveyed the world around him. Disney-themed beach towels hung on the fence and swayed gently in a weak breeze that had begun to sir. A chorus of cicadas buzzed from a nearby fishing pond. The red-winged airplane was still moving slowly overhead. The rich loamy odor of clay soil, weird chemical fumes of sunblock, and sweet scent of spilled fruit punch filled the air. Alternating shouts of “Marco” and “Polo” arose from the younger campers, while the older ones lazed and talked and flirted with each other at the pool’s edge. Sunlight glinted off the steel rims of the parked wheelchairs. The hydraulic lift that ferried the weaker kids in and out of the water clanked loudly. Several feet to my left, a late adolescent in the end-stages of disease lay in a mobile hospital bed and breathed noisily through his tracheostomy tube. Asher’s eyes caught mine. For an instant, his youthful face looked ancient, resigned, and wise. He nodded once, as though to say, “It’s okay, Couns’r Ty, I know.” Then he smiled, stuck out his tongue, gave me two thumbs up, and leapt.