for a moment living life with a body not your own, not under your control. You
fight the the mounting urge to twitch, blink, or sniff, but as is the case when
holding your breath you eventually can hold out no more and you give in to the
invisible demon that is Tourette’s Syndrome. Relief! But only for a moment. Then,
as everyone around you looks at you strangely as if you are some sort of crazy
person, you feel the urge mounting again. So the cycle goes, day-in, day-out,
every day of your life.
Personal: Stories of Life with Tourette Syndrome, edited by Michael G. DeFilippo,
is a collection of personal, bare-the-soul stories from youth and adults who
live with Tourette’s Syndrome, who live the life I’ve just described. Why am
I, an O’Reilly editor, writer of Oracle and SQL books, telling you this? I’m
telling you this because I suffer from Tourette’s Syndrome, and because
my story is one of the twenty or so stories in Michael’s book.
Tourette’s is a poorly-understood affliction. Few people have even heard of
it, and fewer still have a good understanding of it. As a result, life for those
with Tourette’s is often a life full of pain. Lack of understanding on the part
of family, teachers, coworkers, schoolmates, and others leads to intolerance.
Not only must we struggle with bodies that we can’t quite control, but we endure
teasing from schoolmates, are shunned and avoided by those who might otherwise
be our friends, and are frustrated when parents, relatives, and teachers tell
us to "stop it!" Believe me, we wish we could.
Our goal, all twenty-plus of us who contributed to the book, is to promote
understanding of what Tourette’s is and what it’s like to live with it. Both
Michael and I grew to adulthood before we discovered what made us tic; before
we discovered we had Tourette’s. In my own experience, no one in my family,
no in in my schools, no one I worked with, no one at all understood what I was
Tonight I reread my few-pages-long contribution to Michael’s book. As I think
back to my early years, I realize that I may have painted too good a picture.
Growing up with Tourette’s was painful, the more so because I didn’t know then
what was wrong with me. I have many painful memories. Even today it scares me
somewhat to talk publicly like this about my Tourette’s.
Two things would have made a huge difference for me as a child. First, I wish
I’d known early on what I had. There’s no cure, and no particularly good treatment,
but just being able to put a name to the problem has made a positive difference
in my life. I know now it’s not "just me". The second thing is that
I wish people had known. I wish they had understood! Because with understanding
comes tolerance. Several otherwise good, fine, caring adults inadvertently caused
me great pain and embarrassment when I was young because they didn’t understand
what was driving me, nor did they make the effort to understand. Instead, they
just assumed that I was the problem.
Read Michael’s book if you get the chance. And if you don’t read Michael’s
book, take the time to learn a bit about Tourette’s, what it really is, and
how it affects those who suffer from it. Who knows, you might someday make a
difference (hopefully a positive one!) in the life of someone with Tourettes.
For more information about Tourette’s Syndrome, I refer you to the Tourette
Syndrome Association website. If you have Tourette’s Syndrome, or think
you have it, the Patient-Centered
Guides book Tourette’s
Syndrome, by Mitzi Waltz, is a good source of information on treatment,
dealing with the educational system, and other things that you’ll want to
know about. And, of course, if you just want to get inside our heads to know
what it’s like to live with Tourette’s, there’s Michael DeFilippo’s Getting