Twitch and Shout: A Touretter's Tale

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Tourette's syndrome is a neurological disorder characterized by tics, physical jerks, and random shouts and noises that can include profanity and racial epithets. It's become relatively well known through the writings of neurologist Oliver Sacks (whose bestselling book The Man Who Mistook His Wife for a Hat includes several case studies of Touretters--as he dubbed them), and through the 1995 documentary Twitch and Shout, a film coauthored by Lowell Handler and Laurel Chiten, both of whom have the disorder.

Now Handler has written a book with the same name, an attempt to chronicle the disease from the inside, to explore the strange life and symptoms of a person who has discovered, as he puts it, that "the mind has a mind of its own." His personal odyssey includes many digressions into how the disorder has shaped the course of his relationships with his family, his career as a photojournalist, and his sense of purpose and belonging in society. He meets with other Touretters, including a professional basketball player, a medical doctor, and, in one of the book's most surreal episodes, an ex-military man who had served in a nuclear missile silo in charge of the launch keys. But while there is much honesty about the emotional impact of the disorder on an individual's life, Handler (who admits that he suffers from lifelong dyslexia) provides a severely fragmented narrative, jumping from episode to episode with little sense of closure or lessons learned. What's more, he's unable to give much insight into how it feels to have the disorder, or how the mind of someone with Tourette's differs from a nonsufferer. Still, some of his thoughts are intriguing (he posits, for example, that the great 18th-century author Samuel Johnson may have been a Touretter) and individual episodes ring with the resonance of hard-won truth. --John Longenbaugh


From Publishers Weekly
In this straightforward chronicle of a life lived with Tourette's syndrome, first-time author Handler provides a memoir reminiscent of Temple Grandin's autistic-themed Thinking in Pictures. In addition to sharing a common link with Oliver Sacks as friend and counselor, Handler, like Grandin, asks for neither sympathy nor the label of victim. He would prefer that those he encounters in daily life look beyond the neurological disorder that erupts for him in involuntary twitches and grunts. In fact, Handler, by detailing his journey from isolation to treatment and understanding, shows how this rare disease can be a rich creative challenge. Although the author, a photojournalist, never spouts obscenities (uncontrolled profanity and other inappropriate speech afflict only about 15% of the 200,000 Americans who have Tourette's), he spent much of his life up to his early 20s twitching, shaking, jumping and otherwise alarming and upsetting himself, his family and the world outside. Handler offers wide coverage of his topic, from personal thoughts and anecdotes to discussion of pharmacological and political issues. In one memorable section, he takes a "road trip" with Sacks to visit a series of Tourette sufferers and, at one point, uses a bit of subterfuge to lose the good doctor so he can become better acquainted with a young lady. Among the most interesting passages are those profiles of Touretters in which we meet a surgeon, a professional basketball player and a symphony conductor. Equally fascinating are Handler's speculations on whether such historical notables as Samuel Johnson and Mozart suffered from Tourette's. For any interested in this curious disorder, this book is a must read. Photos. Copyright 1998 Reed Business Information, Inc.


From Library Journal
Characterized by involuntary vocalizations and movements, Tourette's Syndrome is a neurological disorder affecting between 100,000 and 200,000 Americans whose diagnosis can be missed if symptoms are interpreted as behavioral rather than medical in origin. The author, a photojournalist, describes his long and sometimes painful odyssey to discover the cause of the tics and jerks that plagued his childhood and adolescence. Along the way we meet family members, physicians such as neurologist Oliver Sacks, and fellow Touretters and learn about the drugs that help control some symptomsAthough not without side effects of their own. The result is an "outsider's" life told from the inside, a personal memoir that profiles other Touretters from all walks of life. Handler is occasionally moving, but the tone is mostly matter-of-factAhe's clearly come to terms with his conditionAand this book will be most appreciated by fellow Touretters and their friends and family. A brief resources section is included. Recommended for consumer health collections. [Gwyn Hyman Rubio's Icy Sparks, a novel whose young heroine suffers from Tourette's Syndrome, will be published by Viking this August.AEd.]AAnne C. Tomlin, Auburn Memorial Hosp. Lib., N.-AAnne C. Tomlin, Auburn Memorial Hosp. Lib., NYCopyright 1998 Reed Business Information, Inc.


The New York Times Book Review, Elsa Brenner
Handler's touching though sometimes awkward prose offers readers an insightful account of the pain and triumph that one person experienced making peace with the limitations of his existence.


Entertainment Weekly, Margot Mifflin
It's a mind-bending account of a mind-boggling affliction.


From Booklist
As many as 200,000 Americans may have the neurobiological condition Tourette's syndrome. Each experiences it uniquely in terms of its effects and of the adjustment it requires for successful living. Handler was not diagnosed until his early twenties, although he and his family had known for years that something was wrong. His first-of-its-kind autobiography, as much an account of his disease as of himself, should stir broad interest because of heightened awareness of the syndrome in the wake of Oliver Sacks' best-sellers featuring reports on Tourette's patients, The Man Who Mistook His Wife for a Hat (1986) and An Anthropologist on Mars (1995), and public ackowledgment by two athletes--major league basketball and baseball players--that they are successfully living with Tourette's. Handler presents his growing awareness of the disease and how it affects his family, school, sex, and work lives openly and with humor. Sacks, Touretters, and non-Touretters all figure meaningfully in Handler's moving and edifying book. William Beatty


From Kirkus Reviews
Episodic, revealing memoirs of a young man with Tourettes Syndrome, a neurological disorder whose symptoms include uncontrollable tics and touching and odd vocalizations. Handler, a photojournalist and faculty member of the New School for Social Research, was born with the disorder but not diagnosed until he was a senior at the School of Visual Arts in New York City. Relieved to know that his condition had a name and that he wasnt alone, Handler eventually became active in the Tourettes Syndrome Association, and it was through this organization that he found the subjects for a series of portraits of Touretters that Life magazine assigned him to produce. Although that series didnt run in Life, the experience led him to contact neurologist Oliver Sacks to suggest a collaboration, and their joint photo essay on a Tourettes family was published worldwide. In 1989, he began a five-year collaboration with film producer Laurel Chiten on a documentary about Tourettes Syndrome, also titled Twitch & Shout. Thus the disorder has not only shaped Handler's life, but has been the focus of most of his life's work. His account of his travels around the country with Sacks as they sought out Touretters is a warts-and-all picture of the noted author, whose peculiar sleeping habits and other idiosyncracies Handler is not averse to recording. He is even more forthright about his own problems, however, describing his search for relief through various drugs (Haldol, pimozide, and for a long time a combination of Prozac and marijuana), his difficult relationship with his brother, the end of his unhappy marriage, in which his pot-smoking lifestyle played no small part, and his brief affair with an especially troubled young woman. With its disjointed structure and photographs that seem to have been flipped carelessly, even haphazardly, onto the page, this memoir has all the energy and twitchiness of Tourettes Syndrome, which is probably exactly what Handler intended. -- Copyright ©1998, Kirkus Associates, LP. All rights reserved.


From Book News, Inc.
With candor and humor, Handler (performing, visual arts and communications, Dutchess Community College) describes the people and places he saw, touched, loved, and hated as he set out to discover himself, armed with a camera, a keen sense of the real, and Tourette's Syndrome (TS). He describes other people with extraordinary bodies and attitudes along the way, including a major league basketball player who integrates TS barks and grunts into his game, twins who tic in unison, and a community of Mennonites in which TS is rampant. He explores the lives of people whose TS is accompanied by obsessive-compulsive disorders, the sensationalism of the media, and his own work on a prizewinning PBS documentary. He includes appendices with information about TS and resources. This is a reprint of the 1998 Dutton edition.Copyright © 2004 Book News, Inc., Portland, OR


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It's a mind-bending account of a mind-boggling affliction. Entertainment Weekly — Margot Mifflin


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