Excerpt
from Chapter 1
A “Playable Identity”
I grew up in St. Louis, Missouri, home of the Arch and home of Cardinals baseball. My parents, Norman and Ellen, divorced very early in my life—so early, in fact, that unlike many children, I was far too young to think that the divorce had anything to do with me. Of course it didn’t. By the time I was old enough to even realize that my parents were divorced, that’s just the way life was.
 To say that I was a very active kid is a complete understatement. At the mall, my younger brother, Jeff, and I were the kids who tore through clothing racks and down the aisles, and generally wore our mother out with our boyhood energy. But the difference between Jeff and me was a question of intensity. Jeff, eighteen months younger, was a typical rambunctious boy—the kind who might be a pain to deal with sometimes, but who was otherwise like most boys.
And me? My energy levels were more manic. My fun seeking was much more frantic than Jeff’s, and my excitability level was much higher. By the time I reached second grade, my relentless hyperactivity was understandably a huge concern at home. My mother realized that something was going on and that it was a disturbance deeper and stronger than anything behind Jeff’s youthful outbursts.
Back then, Internet access was still a few years away, and there wasn’t much information available to answer her questions—or silence her fears. At that time, social resources for conditions like mine were so few and far between that as my symptoms grew deeper, my mother and brother found themselves alone in the house with a virtual stranger. He looked like me, but he was entering all of our lives in staccato bursts of behavior that I couldn’t predict, and over which I had very little control. I, like many people with Tourette syndrome, have a short attention span and some mild obsessive behaviors. (Many with Tourette syndrome also have attention deficit disorder [ADD], attention deficit hyperactivity disorder [ADHD], or obsessive-compulsive disorder [OCD].) And so along with the beginnings of facial twitches and rebellious behaviors came the attention span of a gnat.
We all stumbled along, hoping for the best.
My father, who was not a daily presence in our lives, paid just enough attention to my outbursts to dismiss me as an irritating kind of kid. This prevented him from asking himself some hard questions about what was going on. I know my emerging behaviors both embarrassed and disappointed him. I was a subpar version of that idealized firstborn son, the one whose fantasy image lurked in the back of his, and every father’s, mind. The irritation that he felt toward me—and that sometimes turned to raging anger—prevented him from having to endure any intimacy with his baffling boy. He could always distance himself by falling back on the familiar pattern of being in a snit over my latest outburst.
Looking back from an adult perspective, I am sure my father also had some feelings of helplessness. Here he was, seeing us only on weekends and trying to establish a new kind of workable relationship with his ex-wife. Some people just ignore what they don’t understand and can’t fix. Later, I found out that my dad was following advice he had received from several doctors. They told him that my problems were behavioral and that I needed more discipline. I think he has always regretted how he reacted, but, unfortunately, at that point in his life it was the only way my dad knew how to cope.
And this phase was only the lead-in to my problems. The real beginning came while I was at summer camp, before starting the fourth grade. Each year Jeff and I spent at least a month at Camp Sabra, which was about two hours west of St. Louis, near Lake of the Ozarks. I loved it there because I was able to run and jump and swim off a lot of my excess energy without being yelled at. I loved the organized sports, the camaraderie with the other kids, the counselors—everything. But this year, I developed a strange new habit of clearing my throat every few seconds, all day long. Most of the time I had no awareness of doing it.
Naturally, the other kids noticed. But since no one—including my family and me—had ever heard of Tourette syndrome, nothing much was made of my little habit. Mostly the kids thought it was funny, even though as the season wore on, my frequent throat clearing became a near-constant grinding in the back of my throat.
During closing ceremonies at the end of the summer, my counselor gave me an improvised “Froggy Award” for having so amused everyone with my funny noises all season. I wasn’t upset by the tongue-in-cheek award or by the hand-lettered paper certificate. Up to that point, my vocal tics had developed only to the extent of throat clearing and an accompanying assortment of odd grunts. I could usually get away with letting people assume I was some upstart kid who made funny little noises as a running joke—and I was happy to let them think so.
Inside, though, my strange behavior was so upsetting and confusing that I did my best not to deal with it at all. So, despite whatever implied mockery may have been behind the Froggy Award, I clearly remember stepping forward to accept it without feeling any awkwardness. In fact, I beamed like any class clown getting reinforcement for his antics. The award and the positive attention helped me to believe—for a little while—that I might be able to bury the weird little behaviors, or hide behind the appearance of an eccentric joker.
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