Larry Barber
from
the introduction to
An Unlikely Strength
Tourette Syndrome and the Search for Happiness
In 64 Voices
In the spring of 1956, I found myself standing at the parapet of a roof overlooking a low, dirty-white mountain city. Smoke from wood cook fires drifted upward. The smell of roasting corn and damp stone rose to me. The sky was spread with gray clouds that, out beyond the city, were punctured by the rising cone of the volcano. Above me black wings ranged, and as they spiraled down to stumbling rooftop landings, I saw impossibly large birds—zopilotes. Hunched and scalp-naked, the vultures peered down with patient attention at a mongrel dog limping along a side street. This was my exile. I was eight years old.
I was in the bosom of my extended family, taken (or more accurately, removed) by my mother to Guatemala City. I was guilty of what seemed to be possession by spirits. In less scientific ages, my malady would have confined me to an insane asylum or worse, a fiery stake. So much depends on culture. In other times and places I might well have been revered as a holy man, a seer, a tribal leader.
Still and all, a rational place like Garden City, Long Island required an explanation for the twitches and jerks of my face, my head, my arms. There was no reason I could give other than that I was compelled to do it. It was a difficult sell to adults who believed in free will. My pleas of helplessness collapsed entirely when the vocalizations began – grunts, sniffs, barks – and ultimately my hard, uncontrollable Anglo Saxon profanity. I was banished from elementary school. And more.
Rocking side by side on my backyard swings, dragging the toe of his sneaker in the dirt, a friend confessed he wasn’t allowed to play with me anymore. I don’t remember, but can imagine the pain on my mother’s face, as timid as she was, as I jerked my arm again and again in a supermarket line, or grimaced extravagantly in a bank, or barked in a pharmacy, or spat out fuckshit! in the quiet confines of a doctor’s waiting room. The sudden turn of faces to glare at me, then at her; the movement away from us, people repulsed, frightened, disbelieving, even angry, depending on my outburst. “Take charge,” the faces demanded. “Control him,” they admonished. “Be a good mother,” they scolded. Fiercely protective and utterly dedicated to me, my mother could do nothing but hold me tighter and find the next doctor, who invariably, like his predecessors, had no answers, or worse, blamed her for what plagued me.
Although I vaguely remembered a time when I wasn’t out of control, it had become normal. My life as an observer of my life. Believe me, at first I was no bystander. I fought hard against this intrusive beast. But failure after failure brought me to a bewildering reality: I could not control my mind; I could not direct my body as I chose. I was captive to the mechanism inhabiting my mind, an implacable conveyor belt that rose through layers of increasing tension, hauling me unwillingly to the crest and dropping me into an explosive body movement or embarrassing vocalization. As things went, in 1956 I was a stand-out freak.