Front of the Class Page 3

  “How does it feel when you make a noise or a tic?”

  “Relief.”

  “Do you feel anger toward your mother because your father left town?”

  “No!”

  “How do you feel when other kids don’t want to be around you?”

  “Just like anyone would—sad.”

  “Who do you want to blame when you get in trouble?”

  “Myself.”

  At the time, that was the only answer I could give, because I didn’t understand what was happening. Later, after I learned I had Tourette’s, I didn’t blame anyone, simply because there was no one to blame.

  None of the doctors really seemed to need my help or input—even though my parents’ divorce had nothing to do with my personality troubles, it got the blame anyway. From my point of view, finding the cause of my condition wasn’t nearly as important as finding ways to deal with it—and that was assuming that my emerging jerks and yips and yells could ever be “dealt with” at all.

  Soon after I began classes in the fourth grade, at my new school, the subtler effects of Tourette’s began. They were little things, mostly, but since I had not yet been diagnosed, they were things we didn’t know to expect. Realizing that there were still more unknowns out there that could present themselves was very upsetting. These new little symptoms began appearing like pop-up ghosts in my everyday life, most of all in my struggles with schoolwork. I was too smart to be having so much difficulty.

  Although I didn’t know it then, while I was at school my mother was engulfed in frantic research, because I had begun doing other things that alarmed her. I was twitching. My face, arms, legs, and neck—major muscle groups twitched without warning and for no apparent reason. Imagine trying to read a book or write out an arithmetic problem when your face and head and neck are regularly twitching so badly that you continually lose your place, whether reading or writing. Every few seconds I’d have to take a moment to reorient myself on the page, then take in as much as I could before the next series of twitches came along. Long passages were a struggle, and every assignment took forever to finish. It really was a very slow process, and I didn’t know what to make of it—especially since my cognitive and memory skills were so strong. You see, the actual concepts put to us as students weren’t a problem for me, and the logic behind complex ideas was nothing I couldn’t handle. The trouble came at the point of contact, the first time my brain took in the information, and I felt it most with anything that involved reading or math.

  But my study difficulties paled in comparison to my newest tic—an entirely new era of knee knocking. I mentioned earlier that when I was in the car I’d begun the practice of wobbling my leg back and forth against the door. Now, when I was in the car and sitting next to Jeff, I began swinging my leg just enough to knock my knee against his. Not hard, but just annoying enough to drive any human nuts. The aggravation factor was bad enough, but in this case the worst part was that I honestly had no desire to mess with Jeff or cause trouble. I had no motive for bumping him over and over. But who was going to believe me when my behavior said the opposite? Of course Jeff would demand that I stop, but I couldn’t. At that time, I hadn’t developed my language skills enough to explain to Jeff that what my body “needed” was the feel of my knee knocking against his knee—in some very specific, certain way. I somehow knew that with the impact would come a feeling that turned off the need. It’s hard enough to explain all these years later; I certainly had no capacity for it back then. But I’d guess that the explanation would have sounded too absurd to have done me any good anyway.

  You might be asking how this tic went over on visits with my father.

  The short answer is that it drove him nuts. The first time Jeff and I got into the car with him and the knee knocking started up, he told me to stop—over and over—and of course I didn’t, and before long it wore through his patience like sandpaper rubbing on the skin of an elbow. In his frustration, Dad worked his version of tough love on the situation and popped me across the chin. I began to cry, because I was angry and embarrassed and equally confused. I wanted to stop knocking my knee but I couldn’t, so now I was going to have to pay the consequences.

  Dad moved me into the front seat. So I went back to knocking my knee against the door. Same thing, looking for that just-right knock. Dad thought I was either mocking him or rebelling by trying to damage his car. Round and round it went.

  My mom believed me when I said I couldn’t help it. When I got upset, she rubbed my back to calm me down. It helped a lot, but I still didn’t talk to her about all the scary things goingon in my head. I couldn’t tell her how confused I was, or how frustrated. The guilt of adding more to her burden would have been worse than the relief of talking it over with her. By this time I was old enough to realize how much pressure she was under just being a single parent, not to mention being a single parent of two hyperactive kids, one of whom was thought to be a little “strange.” So I just kept trying my best to figure it all out on my own. Mom kept hoping I would get used to the new house and the new school and settle down. She was especially worried because my teacher had begun sending notes home about my disruptive behavior.

  I should explain that my mom is tall, sunny, and vivacious, with chestnut-colored hair, and she always had a sense of style that her many women friends admired. When Jeff and I were little, Mom sold clothes at a Saks Fifth Avenue department store. After we moved she started her own business selling women’s sportswear, often out of the trunk of her car. Women came to our house to try on clothes, and my mother, with a mix of marketing savvy and genuine friendship, turned their visits into real social events. The key to her success was that Mom always gave the impression that she had no worries. It was her playable identity.

  Mom and the telephone were inseparable, and her favorite place to talk was in our bright kitchen. Her friends often could hear me raising my usual ruckus with Jeff while my mother paced around on the white tile floor. Mostly she talked about frivolous things, but sometimes she and my dad had tense exchanges about child support and whether the check really was in the mail. It often arrived late. But that was—and is—Dad. My birthday presents, to this day, still arrive late. I decided early on to take the better-late-than-never point of view. Better the check and presents arrive late than not at all. Better Mom and Dad have tense phone conversations than no conversations.

  One Sunday, after my usual Sunday morning conversation with Dad, I handed the phone over to Mom. Usually I raced upstairs and found something to get involved in, but this time I stopped halfway up to listen in on the conversation. Mom did all the talking.

  I was totally shocked as I listened to her describe my behavior. I seemed to have played a trick on myself by hanging back on the stairs, listening as the raw truth rolled out. Over the phone, Mom recounted one mortifying incident after another. I froze there on the steps. Did I really do all that? My cheeks got hot with embarrassment at the thought of my mother silently observing me while I acted in such strange ways.

  I couldn’t believe I was that out of control. Mom sometimes had a habit of exaggerating stories; I wondered if maybe that was the case this time. She made the situation sound so bad. When I got back on the phone with my dad, I tried to do damage control and offer assurances that everything was okay. That suited him better. He didn’t want to talk about my tics or my poor behavior—he wanted a quick synopsis of the mundane aspects of our lives, such as how I did on my social studies test or how I was doing on my baseball team. I was happy to play along if it got me off the phone without any trouble.

  About this same time, Dad took Jeff and me on a special trip to Disney World, where he hoped I would behave more like a typical ten-year-old. I wanted to be a typical kid more than anyone could possibly imagine. I was very excited about the trip, as any kid would be, and I did have a really good time. I loved the ride Space Mountain, and I was enthralled by the Disney characters, especially Goofy, who was my favorite. But in my typically optimis
tic way, I had envisioned a trip during which Dad and I actually got along—and I am sure he had the same vision. Instead, I wore down his patience with my constant ticcing and hyperactivity, and he got angry. I became discouraged by my father’s inability to understand that I could not control my behavior. I hated the fact that I couldn’t be what my dad wanted—no matter how hard I tried—and I couldn’t wait to go home.

  If my father was having trouble accepting me, others in my extended family were even more skeptical. My dad’s parents responded to the very mention of my tics with silence. Dad was very much in the bury-it-and-wait-for-it-to-go-away phase that would last until I gained some leadership recognition in my high school years. My cousins were unsure and really didn’t want to deal with me if they didn’t have to. This all made for some very strained family gatherings. Without Dodo, who regularly came to the rescue and who stood up for Mom, Jeff, and me, I am not sure what kind of relationship I would have with any of my family members today. It made me realize firsthand that approval and acceptance are the only effective weapons against an endless array of cruelties to which anyone struggling with a disability is inevitably exposed. Mom and Dodo gave me those weapons.

  Nothing changed the fact that my mother was desperately looking for solutions and that I was still out of control. Once, in a grocery store, I actually heard a woman seriously suggest to my mother that I might be “possessed by the devil.” It’s funny how a remark like that reverberates inside your head long after the moment itself has passed. I know it did terrible things to my already nonexistent self-esteem. What’s even worse is that, for a short time, my mother actually seriously considered the concept. Sadly, over time, this particular woman wasn’t the only one who suggested that possibility.

  None of it mattered to me. I only knew that I continued to struggle at school. Reading an entire chapter in a textbook was like running a race with cinderblocks strapped to my ankles. I knew reading wasn’t supposed to feel that way, and I knew that some of the kids who grasped things more slowly than I did nevertheless could read with much more ease. Any reading task, especially assignments of more than a few pages, took a terrible effort. Before starting a new chapter, I’d count the pages to the finish line. Sometimes I’d find that the last page of the chapter wouldn’t run the full page, but would contain only a few paragraphs. That made me extraordinarily happy, and reaching that final page was always a treat.

  People often ask why Tourette’s should make reading such a chore. After all, if I can see clearly, and I can think clearly, and I can handle language, why is it so hard to read? Twitches aside, the best answer I’ve found so far is to ask a normal reader to imagine trying to read while several people simultaneously snap their fingers in front of your eyes and clap their hands next to your ears. With Tourette’s, those forces of distraction exist internally. The outside world sees only the symptoms, when they manifest in the form of twitches and tics. But within the mind of someone with TS, those physical impulses are only part of the picture. The Touretter’s attention span is tormented with flashes of broken thoughts and abstract imaginings. They constantly flick and flash like dancing characters filling a screen and blocking the view behind them—and they seem to move entirely of their own volition.

  Yes, the tics can sometimes be squelched for very brief periods, but there is a correlative buildup of energy that will eventually force its way out like an explosive sneeze. At that point, the tics are as unstoppable as water spilling over the top of a dam.

  I can now see that there was a time—when my tics were emerging—that they and I were both completely out of control. Now, if I have to, I sometimes bite on a pen or chew gum to focus my energy elsewhere. That sometimes temporarily quiets the tics. Various medications have also somewhat softened the decibel level of my woops and barks, but meds also often have debilitating side effects such as drowsiness and weight gain. Over the years I have taken several different medications for my Tourette’s, and new drugs are being developed all the time. So, although there currently are no medications that completely stop the tics, there is hope that in the future there will be. But in the fourth grade—for me—all talk of drugs and medication was still very much in the future.

  Even though the tics were devastating to me, I never totally despaired. Many with TS are suicidal, but I have never experienced those depths. Maybe there was some gift inside my nature that allowed me to tolerate my high-maintenance constant companion. Although I was distressed by the controversy my behaviors were causing at home and at school, all in all I was curiously upbeat much of the time. Some scrap of identity was left for me by my defining myself as a unique and original person, despite the obvious social stigma. Compared to some of my blander classmates, I never had the problem of walking around feeling unnoticed. I chose to see that as a positive thing.

  In that time and place, I could sometimes even fit in as just another kid on the baseball team (where lots of “chatter” is considered a sign of enthusiastic heckling of opponents). And Jeff and I sometimes participated in normal brotherly activities. We used to play baseball with an old tennis ball and use the garage door as a catcher. For a while, I was a Cub Scout and did all the typical Scout activities, including building birdhouses and participating in the annual Pinewood Derby. Jeff and I had hundreds of small toy cars and we spent endless hours in the spare bedroom, which was our playroom, playing with them or our large collection of baseball cards. We often pretended to be baseball players or wrestlers from WWF (now WWE)—specifically Hulk Hogan and Andre the Giant. Those were times when I did many of the things normal little boys do.

  But even though I sometimes forgot myself in those brief and blissful moments, the reality was that I was not normal. Rather than shrink from my unusualness, however, I embraced it, deliberately taking on an unconventional appearance that helped add to my exotic quality. I wore my very curly brown hair long and wild, in a white man’s version of an Afro. And I dressed in conservative clothes, which made my wild hair stand out all the more. It helped to cultivate a vaguely mischievous persona as well. The image worked, for a while, because my naturally mischievous disposition coupled with my vocal tics projected a picture that made people think I was “up to something”—as if all my little symptoms were part of some secret joke.

  I was juggling a lot of eccentricity, but at that point I could still maintain my inner self in familiar situations—and that reinforced my idea that having a specific identity is a basic human need. Anyone can flourish in a given situation, provided the identity they have—or the one they project—allows them to fulfill their daily needs and accomplish a few of their higher ambitions.

  I find it interesting that many people in unique situations such as mine have been labeled “unacceptable” by our society. Most people are round pegs and fit in round holes. And that’s fine. For them. But those of us who are square or triangular or purple are often looked upon as lesser people. Our media-driven society has made some very shallow citizens out of the round pegs, and there’s no better position than that of a classroom teacher for observing the horrible effects that type of thinking is having upon the youngest members of our society. The costs are enormous when our kids give in to the pressure of measuring self-worth in bizarre ways—by wearing the “right” shoes, for example, or having a cool phone. We need to find better ways to educate our children about their, and our, self-worth. Nonmaterial things, such as kindness and loyalty, should count for more than having great hair. As a child, I found that small but regular doses of acceptance and approval continued to power my self-esteem long afterward. In general, for anyone, acceptance and approval together work like some sort of internal fusion reactor, and just run and run and run.

  When my fourth grade school year finally ended and summer returned, it was time to go back to Camp Sabra. I boarded the Greyhound bus with my pillow in one hand and a backpack stuffed with candy slung over my shoulder. I couldn’t wait to see my friends and find out who would be in my cabin. It was going t
o be so great to get away from the endless reading struggles—and my teacher’s scowling face whenever she had to listen to me reading out loud.

  I needed the familiarity of summer camp. Since I happened to be good at water skiing, I couldn’t wait to do it again—to remember what being good at something actually felt like—and to fit in with the other kids. Water skiing is another of those great sports in which you can yell out anything you want and not get stared at, and, ironically, I usually don’t tic when I ski because my concentration is so focused. I do, however, explode later with a barrage of tics that more than make up for the temporary absence of symptoms while skiing.

  That summer was truly wonderful—a much-needed and welcome relief. I was very grateful for it, and still am; besides water skiing, summer camp is full of places where a kid with tics can hide. The days whizzed by, and they moved all the faster because I could never shake the apprehension that the next school term was coming and that with it I’d be returning to a place where I could count on my constant companion to keep getting me in trouble. That certainty was a cold cannonball lodged in my stomach. Down deep, I was certain that before long my growing list of symptoms was going to leave me even more of a social outcast than I already was.

  Unfortunately, I was right.

  TICS ARE IN SEASON

  AFTER MY GREAT SUMMER AT CAMP SABRA I tried very hard to settle in at school, but it just wasn’t happening. No matter what I tried, I was a distraction to everyone, including myself. Now I was in fifth grade, and my noises had gotten much louder. “Woop! Ja, ja … JA!” My classmates were beginning to keep their distance, and teachers had absolutely no patience with me.

  After one long series of barks, my teacher humiliated me by making me stand in front of my classmates and apologize for making noises. Then she made me promise to stop. I didn’t really understand why I needed to do this, but I got up anyway and stood tall in front of the class. I, of course, was not happy about the situation, but then again, I guess my teacher wasn’t either. I looked each kid in the eye as I apologized, because I was truly sorry for the noises and the disruptions, even though I couldn’t prevent them. And I promised I wouldn’t do it anymore, even though I knew it was a promise I could not keep. Of course, as soon as I took my seat I was barking again.