Community
A few weeks before my brain broke, as I waited in a grocery store coffee line, an elderly man in front of me dropped his cane. I focused on it. The cane’s clatter, the man’s shaky stoop, careful and slow as he picked it up. How sad, I thought, the need to link one hand to the ground. How frustrating to have only one hand to fill your coffee cup, to add creamer and sugar, to stir.
* * *
Estranged from my extended family in preadolescence and raised in a home of three—myself, my identical twin brother, and my mother (my father, already a father, bolted before my birth)—I never considered myself part of a real family. I idolized TV families, normalized a mother and father, children of different ages, and as a teenager I formed pseudo families. Friends I referred to as brothers and sisters. Parents of friends I called mom and dad. Most weekends I attended hardcore shows, which I later traded for the underworld of drug addicts.
* * *
A week before my brain broke, as I sat in the waiting area of a drugstore pharmacy, I noticed an old man. Grinning, chuckling, his cane clicking the floors. “Excuse me,” he said, “I’m a little slow.” All around him people smiled and stepped aside to let him pass. The disabled, I’d soon learn, especially those who use mobility equipment, draw attention to themselves. They’re surrounded by pitying patronizers, people who infantilize and play Good Samaritan—forcing smiles as they open doors, stepping aside to let them pass.
* * *
For two years I felt at home in twelve-step halls. Gone were the betrayals and ensuing distrust that pervaded the drug scene. Twelve-steppers, we held weekend dance parties and cookouts. We visited each other’s home for birthdays and holidays. But something felt off about the program. Trading one obsession for another: caffeine, cigarettes, sex, food, petty fights, clean time, the number of meetings one can attend in a week (some, somehow, boasted double digits). Chanting “keep coming back” to those who relapsed, but never guiding them toward professional help, the rehab and detox facilities many of us had briefly called home. And while we were encouraged to celebrate our “recovery,” we were also encouraged to hide our last names and to contain the contents of our meetings within the walls of twelve-step halls.
* * *
Two weeks after my brain broke, after an MRI showed that my cerebellum had atrophied, a neurologist showed me pictures of my brain, led me in painful, exhausting exercises, and said, with a grin, “You have spinocerebellar ataxia.” When I asked him to define the condition, he refused, still smiling, and ushered me from his office, leaving me to wander into dangerous emotional territory. Maybe he needed to refuse an explanation—having seen patients break down in his office, faking a tight-lipped smile helped him survive each workday. He was wrong, however, to guess my diagnosis before the genetics test results arrived, sending me home with no explanation of the disease, aside from this: my brain may continue to shrink; the only treatment was physical therapy.
* * *
I’d romanticized drum and bass since high school. Not sure why. Call it a visceral urge. Like television, hardcore, and drugs, drum and bass felt as necessary as food and water, as friends and family, and though I felt less connected to bass heads than to recovering addicts, climbing twelve-steps seemed a sluggish, senseless exercise when I entered the drum and bass scene. I was twenty-one, had drunk plenty in my teens, but never in a bar, and after two and a half years of listening to the same recovery stories in church basements and attics, and in stuffy twelve-step halls, furnished with soda bars and old video games, I needed this: hooting and bouncing, sloshing drinks in darkened nightclubs as DJs spun out deep bass lines over breakbeats, transitioning to warbling bass riffs layered over doom-laden samples. I managed not to die or go to jail—a common twelve-step caution (If you leave these halls…)—once the club closed and we convoyed to an old house near train tracks, where we danced as we chased pills with beer, sniffed powders, and filled our lungs with smoke, until daylight revealed our faces.
* * *
My brain shriveled. My knees buckled. I bought a cane. “Excuse me. I’m a little slow.”
* * *
A month after my brain broke, before I began physical therapy, before the lab sent inconclusive results of my genetics test, leaving me without a specific diagnosis, a cause for my shrunken cerebellum—doctors use the word “sporadic” (sporadic cerebellar ataxia) to name an unknown cause of cerebellar atrophy—I researched spinocerebellar ataxia and learned this: The disease is progressive, fatal. Genetic. On my way home I wondered who else in my family suffered from this disease. Who else developed epilepsy and blindness and lost motor skills until they died too young? Each time my eyes wiggled, each time my vision blurred, my hands shook, or pain shot through my back or chest, adding to the constant ache in my hands and feet, the soreness in my legs as if I’d been standing five, six hours at a time, I saw myself in a hospital bed, a death bed, attached to tubes, my neck supported in brace. Drool dangling from my lip.
* * *
Twelve-steppers, active addicts, bass heads—each subculture welcomed me into a realm that for various reasons was closed off, misunderstood, or shunned by society. Each required a special skill, a bank of knowledge, or a particular interest for entry. Each contained its own jargon, a unique set of rules. Its members were dedicated. Obsessed. Despite the pitfalls each subculture contained, each one offered the gift of community.
* * *
Two months after my brain broke, the first time I followed my physical therapist into the gym, filled with people who seemed unlike me because they were elderly, missing limbs, or overweight, I felt out of place. Any moment someone would tell me how much harder their lives were, and that I should come back when I needed fake limbs or a wheelchair, or when I was eligible for senior discounts. Fear dissipated as I worked through exercises in a gym with these others, all of us fighting our conditions. While walking on a treadmill, practicing tai chi, lifting tiny barbells, I began to feel united with those who all my life had seemed unlike me—the obese, the amputees, the senior citizens who smiled through pain as we hurtled toward uncertainty.
