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

Categories: Memoirs