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Twitch and ShoutReview - Twitch and Shout
A Touretter's Tale
by Lowell Handler
University of Minnesota Press, 2004
Review by Ruth E. Nieuwenhuis-Mark, Ph.D.
Nov 29th 2005 (Volume 9, Issue 48)

The blurb on the back cover from Entertainment Weekly tells us that this is "The first memoir by someone with Tourette's syndrome." Written in layman's English, Handler, a Touretter and a photojournalist, takes his readers through what it feels like to live with this neurological disorder. It is a page-turner despite the author's dyslexia, Tourette's and that he clearly sees life in pictures rather than in words (indeed he uses some photographic illustrations to great effect throughout.) As he says himself:

"I have always been much more comfortable with shapes and colors than with letters and words." (p.64)

and:

"Consider this memoir a series of frozen photographic frames, given as much movement and depth with words as I have been able to summon." (from the Introduction, p.xxvi)

This affinity for pictures rather than words shows in his many repetitions and less-than-chronological time-frame. His tendency at times to give us great swaths of facts (historical and pop-scientific mostly) and page-long monologues from various characters we meet in Twitch and Shout: A Touretter's Talealso detract from the forward march of his story. On the whole though these flaws in writerly prowess don't matter. We're driven along through the pages fascinated by the characters, the symptoms, the kinds of behavior and above all by the compassion this man has for both his work and his fellow Touretters. The strength of this account is in the very personal story it tells. Handler doesn't hold anything back, whether it is his feelings, details about his family, his relationships; warts and all are made public. It is this very humanity that I warmed to as a reader while at the same time wondering how Handler managed to escape being sued for libel!

Another great strength is the cast of characters (mainly Touretters -- incidentally a term coined by scientist and writer Dr. Oliver Sacks), scientists, family and the general public Handler introduces us to. Both reactions of Touretters themselves and reactions to them from other people are discussed. Handler has, by self-admission, always felt like an outcast and it is in other people's reactions, which range from "fear, sympathy or indifference" (p.45), or the author's most hated -- pity (p.138), to acceptance (both from Touretters themselves and others) that is the lens through which much of this book is written.

We follow Handler from before his diagnosis, to immediately afterwards and beyond. How he handled his diagnosis is telling:

"I was both stunned and relieved to find out that my condition had a name… but I was disheartened by the fact that it would never go away." (p.33)
"While Tourette was not a fatal or degenerative condition, it was different every day. I never knew what form it would take, and when." (p45)

The typical symptoms of Tourette's Syndrome (TS) include: motor tics, vocal tics, the oversensitivity of the senses and the need these people have to explore their immediate environments, while approximately 15% have coprolalia or unwished-for cursing. A continuum of severity appears to exist with Touretters showing wide-spread individual differences in their symptomatology. Its cause is as yet unknown but is believed to be genetic in that it tends to run in families (in the Afterword, Neal R. Swerdlow suggests 2-10 genes may be involved), while environmental triggers are very important to consider. This book also celebrates and calls attention on the great work carried out by the American Tourette Syndrome Association (TSA). Comorbidity with other disorders is common, including: Obsessive Compulsive Disorder (OCD), Attention Deficit Hyperactivity Disorder (ADHD), and Oppositional Defiant Disorder (ODD). Comorbidity makes medication a mine-field and indeed it's Handler's attempts at self-medication which ultimately create problems:

"I smoked pot numerous times a day and was stoned virtually all the time." (p.162-163)

This contributed to the breakdown of his first marriage and to a near-fatal car crash. Indeed these are some of the low-points this book highlights (another poignant one is his brother's diagnosis with leukemia). Luckily, there are high points too (these include successes in his career as a photojournalist and in meeting Oliver Sacks.) Also, while broken lives are highlighted hope ultimately reigns. Humor is also used to great effect throughout. For example, in writing about Oliver Sacks:

"I wondered what the people who lived in this house would think if they saw a 275-pound man with a huge beard sniffing their plants." (p.94)

and:

"Angel would continue to tell people I had "jerk" syndrome, and I would tell people how he was my favorite minority." (p.201)

Handler has some goals here including bringing TS to the public's attention, philosophizing, questioning and finally accepting both his own and other peoples' differences and urging us, his readers, to do the same. As Elkhonon Goldberg states in the Foreword, this book:

"...is (also) a poignant and courageous public statement, a call for dignity and understanding." (p.xviii)

The memoir itself ends on an upbeat but telling note:

"He barked like a dog," I heard her say. I walked straight by her." (p.204)

Acceptance couldn't be more eloquently stated. Whether TS is "a special power or a disability, but never anything in between" (p158) is touched upon in this memoir, and this book does, in my opinion, succeed in breaking down the barriers of misunderstanding non-Touretters might hold. Handler also makes political and moral points in places (sometimes unfortunately to the point of preaching), but redeems himself too when he says: "I realize that I am not unique" (p.188), and on p.203 suggests: "Maybe it is about tolerance. All we have in this world is each other. And we are all different yet bound by our humanity." It is after all the differences in humanity that makes this world so interesting. As Lowell's father said when learning of his son's diagnosis, "Son, neurological disorder is the wave of the future" (one of the quotes at the beginning of the book).

As more and more people in our world receive diagnostic labels, this statement could be closer to the truth than I suspect any of us realize. Memoirs like Handler's should increase awareness of these issues. Whether it makes the majority compassionate or not is unlikely in my opinion because people still shun difference in their fear of the unknown. Who knows though; this book might just open some peoples' eyes. Surely then this public outpouring, this laying-his-heart-on-the-line, will have been more than worth it.

 

2005 Ruth Mark

 

Ruth E. Nieuwenhuis-Mark, Ph.D., is lecturer of neuropsychology at the University of Tilburg in the Netherlands. She specializes in Alzheimer's disease, stroke, epilepsy and other neurological disorders. Her personal website can be viewed at: www.remark.be


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