Against Medical Advice Read online

I’m like a bird in the canopy of a great forest — one that’s washing stillness over my body. Up here, I’m part of another world — a zone without time or stress. I needed to get here because of the thrill but also because, up here, there’s something I can never find on the ground. A place where no one can see me tic.

  I don’t see any reason to come down.

  No reason in the world.

  What I don’t know, and won’t for many years, is that the act of climbing this tree is the key to something wonderful.

  This is it. I just don’t know it yet.

  Resource Room

  Chapter 19

  YOU’D HAVE TO BE unconscious not to realize that something is about to break loose in the Resource Room at my school. It’s obvious to all the kids that Phillip is getting more hyper by the minute, but Mr. Jansen is still sitting behind his desk, reading today’s New York Times. He seems concerned with what’s going on only when it gets so loud that you can hear us in the halls or when someone starts to freak out. Then he yells, “Be quiet and sit down! Now!”

  The Resource Room is a classroom set up as a quiet space for special-needs kids like me who require a break in order to get through the school day or need a place to go when they get to be too much to handle in a regular classroom. The teachers have started sending me here for time-outs a lot, ever since my behavior in class got out of control.

  Everything about middle school has made me worse. Just changing classes puts me under unbelievable pressure. I can’t work the combination on my locker very well, so I’m always late for my next period. When I finally do get the door open, I usually forget to lock it again. Already I’ve had my jacket, books, and several lunches stolen. Feeling anxious between classes makes me worry all the time, and that’s made my tics go off the charts.

  This is the main reason one of my teachers sent me to the Resource Room again today.

  There aren’t that many of us in the school who come here, and everybody knows who we are. I’m not the only sixth grader, but I’m the only one who comes because his body is like a Mexican jumping bean.

  The trouble with the Resource Room is that it isn’t what it’s supposed to be — a rest. It’s not really Mr. Jansen’s fault. He can’t do much to keep kids like us under control. We’re already on medicines for that, and he probably figures that we come to this room when our medicines aren’t working. What chance does he have?

  So I’m not surprised when, without any warning, Phillip bursts out of his chair and begins to run around the room, screaming his lungs out and knocking things off other kids’ desks and the blackboard railing. Phillip is the most out-of-control kid in the entire school. He never stops moving and can’t be quieted down no matter what people say to him. So Phillip and I have a lot in common.

  On his second lap around the classroom, Phillip suddenly cuts into a row of desks and slides to a stop within a few inches of a boy named Danny. You never know what Danny is going to do either. He can be as still as a rock, just staring into space, or he can get as wild and crazy as Phillip.

  Phillip approaches Danny and reaches for his head, grabbing a fistful of curly red hair. Before Danny knows what’s happening, he’s being dragged out of his chair headfirst. Even though he’s way off balance, he manages to get to his feet and kick Phillip in the leg. He follows that by grabbing Phillip’s arm and sinking his teeth into Phillip’s wrist.

  Phillip retaliates with a kick of his own that misses Danny and makes a desk go flying. Both kids are about the same size, so this fight could go on for a while, unless the teacher gets them to stop.

  “Hey, you two!” Mr. Jansen yells, making his way into the fight. He reaches Danny just in time to stop him from pushing his hand into Phillip’s face. The teacher separates them by grabbing their shirt collars.

  “Knock it off right now or you’re going to Mr. Arno’s office.”

  The threat of being sent to see Mr. Arno scares just about everybody in the school. Mr. Arno is the vice principal and is in charge of discipline. He’s a big man with a floppy mustache and an expression like that of a snarling wolf. When he talks, he sounds like he’s barking at you.

  Phillip doesn’t tune in to what Mr. Jansen is saying, so he continues to fight until his shirt is almost torn off his back.

  Danny is more in touch with reality. He stops fighting, which calms Phillip down. In a few seconds, Phillip stomps back to his seat.

  Mr. Jansen shakes a finger at both of them. “Don’t make me talk to you again. This is a rest period. All you have to do is be quiet!”

  For a while things are peaceful, but Danny is still upset. Phillip has really hurt him this time, and he’s angry.

  All of a sudden, Danny lets out a howl and launches himself like a missile at Phillip. He knocks both Phillip and his desk backward.

  “That’s it!” Mr. Jansen hollers, charging out of his seat again.

  I want to help calm things down, mainly for Danny’s sake — he didn’t do anything to deserve being attacked. But the last time I tried to help in a situation like this, I was told to stay in my seat, and I don’t want to make Mr. Jansen angry at me.

  The fight ends before the teacher gets to them. Danny has satisfied his urge for revenge and is moving back to his seat. Phillip is also tired of the fight — the last push knocked him out of his chair and sent him sprawling to the floor.

  For the first time since I came into the Resource Room today, there’s no noise. The quiet feels good, but it’s already too late for me. I’m more anxious now than I was when I got here.

  The silence lasts about another twenty seconds. Without warning, Phillip leaps out of his desk and heads full force for Danny, waving his arms and offering up an earsplitting scream.

  Mr. Jansen bolts out of his chair again, but before he gets to them, the fight spills over to where two other kids are sitting. One is the only girl in the room, and she starts crying and puts her head down on her desk.

  I put my head down, too, to try to block out what’s going on. I make a few throat-clearing sounds and do a few shoulder lurches that have been building up. Poor Mr. Jansen doesn’t know what to do or who to talk to first, so he ends up standing there, checking the clock on the wall. He still has ten minutes left with us.

  My mom has to come early to pick me up, but at least she’s first in the car line.

  Med Menu

  Chapter 20

  WHAT’S SO TERRIBLY WRONG with me that so many smart people can’t help me figure a way out of it? It’s been more than six years since my body started jerking, shaking, quivering, twitching, and exploding on its own. I’m more out of control than ever, and I wonder why anyone thinks another drug is going to help after we’ve tried so many. I’m already eleven years old. My so-called childhood is almost gone.

  Lately I’ve heard Dr. Pressler describe some of the things I do as compulsions. That’s why she’s prescribed Celexa, the first antidepressant I’ve ever taken. Everyone thinks it could be a breakthrough for me, since antidepressants work on compulsions, but in my case, the medicine seems to make everything worse. Celexa hypes up the need to jerk my body to one side so violently that I hurt a nerve or something, and it takes days for me to stop jerking and hurting myself.

  After Celexa comes Paxil, another antidepressant. My doctor says it’s worth trying because different medicines can do different things, even if they’re in the same general category.

  For a while Paxil really helps my mood. I become much happier than before, and being happy calms my tics down. But then my mood gets so good that it doesn’t feel real. I actually tell my mother, “I don’t want to grow up. I don’t want things to change.” How weird is that?

  The good time doesn’t last for very long, anyway. By the end of a week of nirvana, I start getting into trouble at school again, falling off chairs and being disruptive. So my mother begins to take me off Paxil right away. Against medical advice, I guess. A short while later, the school calls her and says I had a great day, and she thinks th
at my getting off Paxil is the reason. But I think, If things are better when I’m off Paxil, then why weren’t they better when I wasn’t on it to begin with? Maybe it’s only that I’m still coming off the drug, which is like being on a lower dose. So we go up and down on Paxil a few more times, but we can’t see that it helps, and I finally get off it altogether.

  When I have good and then bad days on the same medicine, it’s hard to know what’s going on. Is the medicine wearing off? Is it the different doses I’m trying? Dr. Pressler says maybe my mind eventually figures out how to beat each medicine so that it can go back to the way it was.

  Fluvoxamine is one of the worst drugs I try because its side effects are so extreme. At first it calms me down quickly. My dose is increased, and I have another great day at school. Right after that I can’t stop laughing in art class and am asked to leave.

  From there I become depressed, and the dose goes up again. Three more calm days in school are followed by a sudden burst of more tics and cursing in front of friends. I begin clenching and unclenching my right hand so hard that after a while it becomes impossible to open and close it at all.

  Even worse, my body is jerking almost continuously, and for the first time it keeps doing it in my sleep, the only period when my body gets a rest. That’s a real problem. I can’t sleep, and it’s making me crazy, seriously crazy.

  When we finally lower the dose of fluvoxamine, my twitching goes down pretty fast; the cursing, too. My food and germ phobias go away. Then we add clonidine, which I have taken since first grade, and everything is okay until I start throwing things and having to touch boiling pots of water on the stove. I get in trouble at school by talking, laughing uncontrollably, and saying nasty things, so there goes fluvoxamine.

  It kills me that there are so many unsolved mysteries about my medicines. Once in a while one starts to work, then something changes and the side effects get worse. I never know if it’s the medicine itself, the combination of medicines, the doses, or the usual ups and downs that happen with Tourette’s. This is the most complicated puzzle I can imagine for my doctors and parents to try to figure out — which probably explains why they haven’t so far.

  But we have no choice except to keep trying. Our new plan is to start on BuSpar in a few days, because Dr. Pressler now believes anxiety is causing everything else to be worse. She’s also talking about trying a new drug called Risperdal, an antipsychotic used for schizophrenia and to control violent behavior. This is a very big decision for my parents. Risperdal hasn’t typically been used for Tourette’s, and I’ll be one of the first Tourette’s kids in America to try it. I’ll also be part of a new study, like a lab rat.

  Risperdal worries me for another reason. People who take it gain, on average, thirty-five to forty pounds. So instead of being just a kid who can’t stop moving, I’ll become a fat kid who can’t stop moving.

  The Last Ball Game

  Chapter 21

  I’M STANDING on the pitcher’s mound in front of hundreds of people in the biggest game of the year, the Little League town championship, on Memorial Day weekend. I’m basically a nervous wreck but also as happy as I’ve ever been. This is a rare chance for me to be the center of attention.

  For the right reasons.

  Playing baseball is the best time of my life, and against all odds I’ve become a good pitcher, a sixth grader who can throw a sixty-five-mile-per-hour fastball, though not always as straight as I would like. I’m also able to hit long home runs when I’m not striking out, which happens a lot, too.

  We’re losing by three runs, and they’ve got the bases loaded with two outs in the fourth inning. I’ve just come in to replace our pitcher. My team expects my help in winning a game that will be talked about until next season’s first practice sessions, when there’s still snow on the ground. At least, in my family it will be talked about.

  Today I’ve come to the game with many more tricky moves than the crowd expects. Due to the stress, my tics and compulsions have reached a whole new level. I’m also bigger than anyone’s ever seen me. As expected, I’ve gained thirty-five pounds from the Risperdal, which I’ve been on for a few months.

  And I’ve taken an extra dose before today’s game.

  As the stadium quiets and I look for a signal from the catcher, I give in to an urge to start touching the tip of my nose with my mitt in an exact sequence, three times, then two times, then one. I complete this complex compulsion by tapping myself softly in the crotch with my glove.

  Today, because of the extra tension, I’ve done this ritual before each of my first two pitches, and it has distracted me so much that both pitches were balls, missing the strike zone by a mile.

  This time when I start my tics, I notice some of the guys on the other team watching me from the sidelines. So far they aren’t reacting, just staring. Even though I know they’re aware of my Tourette’s, I tell myself that a lot of pitchers, out of nervousness, go through their own rituals on the mound, even in the major leagues, so maybe what I’m doing is no big deal.

  When the touching is over, I stand up straight and turn the ball in my glove until the stitches are in the exact right place for my fingers.

  My body becomes still, I cock my right arm, and I throw the ball as hard as I can. It flies straight over the center of the plate so fast that the batter can’t get around in time. The umpire calls strike one. I’m in heaven. All right! There’s hope.

  The crowd in the bleachers to my right is rooting for my team, and they erupt in a cheer like they’ve just witnessed the best thing ever. It’s amazing to see how important this game is to them, and it feels good to know that I’ve come through with a decent pitch.

  Nose three times, then two, then one, pound my crotch.

  This time one of the kids from the other team picks up on my ritual of movements and yells, “What’s the matter, pitcher, you nervous? Can’t take the heat?”

  I have a tough time concentrating on my next pitch. Then another kid shouts, “Choke, choke.”

  I take my foot off the rubber for a break, turn to the outfield, and try not to think about the cruel taunting and about what happened in my pregame warm-up. I’d been throwing really well, not every one a strike, but most. Then, all of a sudden, I let go of a ball that sailed at least ten feet over the practice catcher’s head. Something told me, Throw a wild pitch.

  I worry that this can happen now, in the real game.

  I also worry that something will tell me to throw the ball at the batter, which would be horrible. I can’t stand the thought of hurting anyone with my pitching. I do throw fast, and this hardball in my hand is a lethal weapon.

  By now a bunch of the opposing team’s players are off the bench and standing along the first-base line. The batter is taking warm-up swings at the plate.

  The next time I touch my nose, I hear one of the players yell something at me, then another and another. Their voices echo in my head, and even though I can’t get all the words, I know for sure that they’re making fun of my ticcing and dancing around.

  “Choke, choke, choke,” they chant in unison.

  They all know I can’t help the tics, and I can’t believe they’re using it against me. This is really crummy sportsmanship. Why isn’t someone telling them to stop? Where’s their coach, a grown-up who has to know how unfair this is?

  I hurry through the rest of my movements, just to stop the shouting, and throw a really bad pitch for ball three.

  The other team bursts out laughing, like they know they’ve made me worse by taunting me. It’s cruel and it’s wrong, but it’s working.

  Even before I get ready for my next pitch, the whole team is shouting all kinds of things to make me more nervous.

  I look for their coach again to see if he’s going to stop this. He’s the father of one of the players and also the team manager, and when I spot him I’m shocked to see that he’s up on his feet next to them. He’s yelling at me right along with his team. He’s leading them on.

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sp; I don’t know how a grown-up can be doing such a thing. It feels like he’s using my nervousness against me. I thought everyone would have known what this would do to me.

  The more they yell, the more I need to tic. Suddenly I lurch forward with a bending tic. When they see that, the noise level goes up even more. But not on my team’s side of the stadium; they are mostly quiet.

  I suddenly hear my father’s voice rising above our opponents’ shouting. I look over at him, and at my mother and sister. My father is standing now and calling across the infield to the other team’s coach. He’s telling him to shut his players up, but the coach isn’t paying any attention. My mother is staying in her seat, looking as tense as I feel. Jessie gets to her feet to cheer for me, saying, “You can do it, Cory.”

  Throw a wild pitch, something inside my brain tells me. The bad thought happens all at once and is too much for me to tune out.

  Throw a wild pitch.

  Throw a wild pitch.

  I take a few deep breaths. I focus on the red seam of the baseball.

  As I get ready again, the noise from the other team is so loud I can’t even hear what they’re saying. But I know what they’re doing, and I’ve had enough. I can feel the change in my mood, and the change in my body.

  Instead of making me more nervous, their jeering is making me angry.

  Throw a fastball for a strike, I tell myself. Right down the middle. Faster than you’ve ever thrown before.

  This time I hurry through the touching so quickly that I leave out a step, and when I let go of the ball, it flies straight and fast. The batter barely gets around and fouls it off for strike two.

  Three balls, two strikes, I say to myself. Now I have a chance. And then the significance of what’s just happened dawns on me: I can still throw a good pitch even when they’re yelling.