Twitch and Shout • Passing for Normal: A Memoir of Compulsion • Motherless Brooklyn

The first two books on Tourette's syndrome reviewed here, Twitch and Shout and Passing for Normal, are first-person accounts, written, respectively, by a man in his forties and a woman in her twenties. The third book, Motherless Brooklyn, is a novel whose main character is a young man with Tourette's.

Lowell Handler, the author of Twitch and Shout, has been diagnosed as having Tourette's syndrome, dyslexia, attention-deficit disorder, and obsessive-compulsive disorder. His psychopharmacological treatment has included haloperidol, pimozide, and fluoxetine as well as self-prescribed cannabis. He grew up in the New York City area; he was unable to read fluently until his late teens. His employment has included functioning as a case manager in a program for homeless mentally ill people, where he was really a recreational worker, and assisting neurologist Oliver Sacks on a project. Now 43 years old, he is a successful photojournalist.

Handler's prose draws an empathic response from the reader. He makes telling statements such as "I could qualify as an outcast even among outcasts." He talks about his depression, despair, and hypersomnolence in response to learning of his diagnosis and what it might mean for his life potentials. Ironically, for much of his life before college, he and his family were unaware of what his condition was called. Handler adroitly describes other people's responses to his "bizarre" display of noises, curses, and tics. He states, "I noticed that people who are especially nervous or uncomfortable with themselves were most bothered by my Tourette, as if they were internalizing my disorder."

Handler often asks himself questions about his future: "Would I be able to continue my career? Would I become some sort of village idiot, living out my life in solitude and distress? Would I ever have a remission? Would it ever go away? How would I be able to function socially or professionally? Would women shun me?" He had no way of knowing how his disorder might control his life.

Handler is adept at portraying the challenges that Tourette's syndrome presents to him and his not-infrequent defiance in the face of those challenges. "After Touretting I always look to see if anyone is staring," he writes. "When I inevitably find they are, I stare back in defiance, only prolonging the embarrassment, bewilderment, or, worse, outrage on strangers' faces." Handler describes the insensitivity and discrimination he experienced not only in his adult life but as a child, when he was called "Blinky" or "Winky" and similar names. He points out that such derision "affects you throughout your life."

Handler recounts what he was told by another person with Tourette's syndrome: " 'To those who have experienced it, no explanation is necessary. To those who haven't, no explanation will do.' That's the truth. People can be sympathetic or identify with it a little bit, but they can't understand it." In Twitch and Shout, Handler provides a work that could go a long way toward disproving this proclamation. He has also produced a powerful portrayal of himself and others who have Tourette's syndrome. The book is all the more compelling for its inclusion of photographs, mostly of people with Tourette's.

Twitch and Shout should be read by people interested in Tourette's syndrome, people interested in neurological or psychiatric disorders in general, and people interested in any human condition that singles out individuals for social isolation and ridicule and constricts them from what they otherwise might be.

The author of the second book, Passing for Normal: A Memoir of Compulsion, is Amy Wilensky, a 28-year-old who grew up in Sudbury, Massachusetts, and attended Vassar College and the Columbia University writing program. Although she developed tics at age eight, it was not until she was 24 years old that she was diagnosed as having Tourette's syndrome and concomitant obsessive-compulsive disorder. Throughout most of her life, she has wondered whether she is or is not "crazy."

Wilensky provides both a provocative and a sympathetic portrayal of what it's like to have Tourette's syndrome and what it's like to be overwhelmed by obsessions and compulsions. She describes her existence with such comments as "My own sometimes aggressive, confrontational manner of speaking can be partly attributed to the fact that for 20 years I've had to tolerate having my sentences finished—usually incorrectly—by others, who assume, wrongly, that I am searching for words."

She also writes that to know her is to know "what it was like to fight your own body for control every single waking minute of every single waking day." Or, "Over the past 20 years I have tilted my head sideways to varying degrees … thrust my chin forward, shifted my lower jaw to either side or back and forth, rolled my eyes to their outer corners, clicked my back or front teeth in patterns, and rotated my shoulder blades, as if I were trying to make them meet in the middle of my back."

A dilemma for Wilensky, dramatized throughout the book, is her struggle to separate herself as person from herself as a cornucopia of movements and obsessive thoughts. Wilensky writes, "It had occurred to me that, if released from all my rituals—the deeply engrained counting, sorting, hoarding, and checking that were as much a part of my life as getting dressed in the morning, eating dinner at night—I actually became someone else, someone who might resemble me, share defining aspects of me, but who was, when it came down to it, not really me at all."

Passing for Normal focuses mostly on Tourette's syndrome for the first part of the book, and on obsessive-compulsive disorder for the rest. The reader is given a real feel for the personal experience of each of these disorders, and a three-dimensional perspective of living with the two together. Further, like many other people with chronic disorders, particularly chronic psychiatric or neurological disorders, Wilensky is frequently struggling to "pass"—to be seen as "normal," or at least to be seen without the disability that they feel is their defining characteristic.

Passing for Normal flows well and is easy to read, but it is perhaps somewhat longer than it needs to be. The book sags a little from the burden of repeated descriptions of patterns of thought and behavior related to obsessive-compulsive disorder. Nonetheless, I would recommend the book to those in the health professions and to others who want a better understanding of Tourette's syndrome accompanied by obsessive-compulsive disorder.

Motherless Brooklyn is a quirky novel, included here because the main character, Lionel Essrog, has Tourette's syndrome. While I found the novel difficult to follow, and the cast of characters not terribly engaging, Essrog himself, who is both the narrator and the central figure, is a very interesting individual.

In Motherless Brooklyn, author Jonathan Lethem succeeds in providing another portrayal of Tourette's syndrome with wonderful use of language. Essrog makes such pronouncements as "I'm a carnival barker, an auctioneer, a downtown performance artist, a speaker in tongues, a Senator drunk on filibuster. I've got Tourette's." Or, in another description, "For me, counting and touching things and repeating words are all the same activity. Tourette's is just one big lifetime of tag, really."

Throughout the novel, Essrog erupts in Tourette's sequences related sometimes by clang associations, sometimes by content associations, sometimes by rhythms, and sometimes in unfathomable ways.

Many of the other characters demean Essrog; some do it pointedly and seemingly ridicule him, and others do it through a perverse sense of camaraderie. As Essrog says, "Me, I became a walking joke, preposterous, and improbable, unseeable."

Lethem does a marvelous job of explaining how Tourette's circles back on itself, perpetuating an inward spiral of symptom upon symptom upon symptom. He writes, "Have you noticed yet that I relate everything to my Tourette's? Yup, you guessed it, it's a tic, counting is a symptom, but counting symptoms is also a symptom. A tic plusultra. I've got mega-Tourette's. Thinking about ticing, my mind racing, thoughts reaching to touch every possible symptom, touching touching. Counting counting. Thinking thinking. Mentioning mentioning Tourette's. It's sort of like talking about telephones over the telephone or mailing letters describing location of various mailboxes."

Motherless Brooklyn works well as a primer on Tourette's. Unfortunately, it doesn't work as a novel. Most of the other characters are caricatures. The reader basically doesn't care about what happens to any of them. The book is written as a quasi-mystery, but it doesn't succeed in this genre. The first three words of Motherless Brooklyn are "Context is everything." Unfortunately, while the description of Tourette's is worth the read, the context fails. The reader will do better to get a sense of Tourette's syndrome in the other books on the subject reviewed here.