Everyone seems to be sick with something these days, and everyone wants to write a book about it. The products of the “my disease” trend are mostly efforts by literary civilians exploring a condition that feels unique to the writer but is, in fact, unique only in that whoever puts out the first oh-my-asthma/depression/ingrown toenail chronicle gets some payback from all those doctor and medication bills.
But it would be impossible to write a boring book about the queen of afflictions, Tourette’s syndrome, and Lowell Handler, a photographer, filmmaker (of the documentary Twitch and Shout), and lifelong sufferer of that fascinating neurobiological condition, has written a funny, painful, and unusual one. Handler tells his own story simply and chronologically, leaving the poetry and philosophy Tourette’s tends to inspire to his friend and “Tourette mascot” Dr. Oliver Sacks, the neurologist who has written masterfully on the subject.
Anyone who has heard the call of unrefusable physical and mental compulsions will be able to sympathize with Handler’s confusing and exhausting plight, but the author’s regular-guy insights will also engage interested nonsufferers. It wasn’t until his senior year in college that Handler was officially diagnosed as being something more than nervous, excitable, or weird. He displayed fidgety, “unbabylike” symptoms in his crib and grew into a rather violent Touretter whose compulsions include “testing” surfaces for resistance, ending in a lot of smashed crockery, punched-in walls, and outraged theater and airplane patrons. His condition crippled his schoolwork (a severe dyslexic, he often wrote notes in mirror image) and obliterated any chance of a teenage social life. His speech is characterized by “an uneven jerky tone,” some syllables shouted, some grunted, that passes for stuttering. The diagnosis gave his oddities a name, but it denoted a neurological Pandora’s Box—and slammed the lid on hope: He would never be cured, possibly not even controlled.
The tics, jerks, noisemaking, destructive and disruptive impulses, echolalia, coprolalia, compulsive touching, straightening, and cripplingly obsessive thoughts that typify the disease can very roughly be described as the result of an excess of the excitor neurotransmitter dopamine. But that unrevealing definition is as close to conformity as most patients come. For one hopeful week, I thought I might have the glamorous Tourette’s, but after a visit to a specialist, I was marked down to having a mild and, as far as he could tell, totally anomalous manifestation of obsessive-compulsive disorder. (Tourette’s colorful plumage is actually feathers of big bird OCD.) I was disappointed by the diagnosis; the hair-pullers and hand-washers are in good company in their strange club, but displaying unique symptoms leaves the sufferer alone with a wearying and time-wasting eccentricity.
While the specific manifestations of this single quirk vary wildly from patient to patient, they all bespeak a driving human need too intangible to be isolated within the physical labyrinth of the brain—a need to impose order in a random universe—plus a converse desire to see that order destroyed. What makes Tourette’s seem almost dashing to the outsider is that it forces its victims to act outside of societal definitions. The order they desperately seek isn’t socially “necessary”—staying within traffic lanes is not a Touretter’s priority, but touching everything with both index fingers a precise number of times may be. As for the destruction, it does manifest itself in social terms; hence the drive toward colorful and upsetting outbursts—actually a symptom in only about 15 percent of cases—that have made Tourette’s a gold mine for sitcom writers.
Society also imposes rules and inscribes lines within imaginary landscapes; what is the football-score head or the X-Files trivia freak, or, for that matter, the poet of strict Alexandrine verse, but an obsessive-compulsive whose disorder is so transparent as to seem nonexistent? Handler muses on the obsessive and/or compulsive habits of various family members, and late in the book tells an extraordinary story: He and Sacks meet up with a humorless, egotistical Touretter named Cliff, who appears to be totally asymptomatic; Cliff claims to suppress his disease with a combination of medication and self-control. At the end of their unproductive journey, Cliff says, “One last thing….When you tell my story, please refer to me as ‘Spock.’” It seems that Cliff managed to funnel all of his Touretting urges into a Star Trek obsession.
Tourette’s is a real disease and a horrible one; I have no wish to trivialize it by making a facile connection to the pastimes of the unafflicted. In The Man Who Mistook His Wife for a Hat, Dr. Sacks asks the reader to keep in mind the “existential” approach to disease, “in particular, a sensitive understanding of action, art and play as being in essence healthy and free, and thus antagonistic to crude drives and impulsions…from which these patients suffer….[W]hen the galvanised [medicated with dopamine-leveler Haldol] Touretter sings, plays or acts, he…is completely liberated from his Tourette’s.” But Cliff’s detouring of his symptoms into a socially acceptable avenue further blurs the already undulating and indistinct line between normal and excessive dopamine levels.
Gradually, almost unwillingly, Handler becomes a Tourette’s activist, testifying before the Food and Drug Administration on behalf of the “orphan drug” pimozide, taking his camera into a summer camp for emotionally disturbed children, and profiling high-functioning Touretters for Life magazine. He tours the country with Sacks, talking to sets of Touretting twins, embarking on Cliff’s interstellar adventure, and meeting up with music critic Adam, who introduces himself with, “Hi, Lowell, fuck, cunt, shit, how are you?” But all this reaching out has serious side effects; observant Handler wryly notes the range of reactions to his own acting out—health-care professionals are the most intolerant, and insecure types seem to be “internalizing my disorder,” he writes. “People in close proximity to me sometimes commented that they thought I was mocking them.”
Along the way Handler discovers some of the disease’s own mocking quirks—sex between Touretters, you’ll be happy to know, is completely tic-free. He experiments with pot and Prozac, finding the former an effective-enough symptom depressor to destroy his marriage, and meets the jester god in control of human bodies face to face when his “normal,” healthy brother Evan is struck with leukemia.
For all his outward jerkiness and difficulty of expression, Handler writes fluidly, but his restless mind makes weaving connections among neurological, physical, and habitual quirks that unite the small, strange world of this volume. His brother’s disease, his mother’s habit of insistent repetition, the telltale eye-blinking and stamping of strangers, and the just-so persnicketiness of the great Tourette’s mascot himself seem to bind the human state in a web of social and biological whims. His photographer’s eye is acute, as well—halfway through the book there’s a picture of Sacks standing outside a train station, scribbling, his disemboweled briefcase, umbrella, and one glove on the ground, his extra-long trousers pooling over his shoes, looking for all the world like another crackpot on the loose. There’s an unspoken question at the center of this search—pertinent to anyone—if this is normal, then what am I? CP