“But not now?” my father asks in a sharp tone. He isn’t a big fan of the Ritalin that’s turned my mind into fruit salad.
The doctor doesn’t like the sound of his voice. “Cory, would you like to go into the waiting room and play with some of the toys I have there? I think you’d enjoy that.”
My mother tells me to go and that she’ll be there in a few minutes.
Years later, my mother filled me in on what was said after I left. Dr. Laufton wanted to let my parents decide what and when to tell me, but she said that from what she saw, it was likely that I had Tourette’s syndrome. The head twisting, the grimacing, the spitting — they were all tics. Vocalizing — making sounds such as throat clearing — was another common symptom of Tourette’s. Echolalia was the term for repeating other people’s words.
The doctor said there was no quick fix to get rid of the condition, that my body needed to move on its own. But there were any number of medicines and combinations of medicines we might look into — it would be trial and error.
My mother and father didn’t know it at the time, but they were about to go on a scary roller-coaster ride that would last for many years.
I already knew what the ride would be like.
I was on it — and I was in the front seat.
School Daze
Chapter 9
I don’t remember much about nursery school; mostly my teacher yells at me to do things I’ve forgotten to do and to stop fidgeting.
There are constant time-outs when I can’t do simple things fast enough, such as hang my coat on a hook. My teacher is always mad at me, even though my mother tells her I can’t help what I do. The teacher says my mother is overprotective and that she should go have another child and leave me to her. The truth is that in addition to my body movements, I was also born about seven weeks’ premature and therefore am not as good with my motor skills as most kids are at that age.
By the time that long, excruciating spring and summer finally end and I arrive at kindergarten, it is obvious to my parents that my condition is actually several conditions. It is their choice not to tell me or anyone else the names of them. Tourette’s syndrome isn’t something people understand much about. It just makes you weird to other people.
And to yourself.
In first grade, my behavioral problems are a lot easier to see. My body is doing strange things several times a minute, and it has to be obvious to everyone that there is something very unusual about this kid named Cory.
My parents have found a new therapist for me. Her name is Dr. Pressler, and she is one of the world’s leading experts in Tourette’s syndrome.
The drive to meet Dr. Pressler takes about an hour and a half, because her office is in a medical building in another state.
After examining me, she puts me on a different medicine that’s actually for people who have high blood pressure, but she says it helps a lot of Tourette’s kids. Pretty much all the kids like me start off on clonidine.
When my behavior and my movements don’t get much better, Dr. Pressler slightly increases the dose every few days, like my other doctor did. Clonidine definitely tires me out, so I don’t have as much energy. But it doesn’t stop me from twitching and jerking my arms and legs, or even from spitting at kids in school, which I’ve done off and on since my Ritalin days.
Some of the things I’m doing may not even be tics at all. Lately I have to stab paper cups with pens and knives, and I have to wash my hands several times after I use my computer. These compulsions don’t feel the same as the other tics.
Then suddenly I start something new that happens every morning before school.
As my mother creeps ahead in a long line of cars to get to the entrance of the Dellbrook School, I get obsessed with the thought that something terrible is going to happen to her after she drops me off and I’m not around to protect her.
She’s going to fall down a flight of stairs and die.
She’ll be hit by a car or fall into a ditch.
Unless . . . unless . . .
Suddenly I think of the one thing that can save her, my mom’s only hope.
“Promise you’ll be first in line to pick me up?”
It doesn’t matter to me that this isn’t a logical solution to my mom getting hurt after she drops me off. All I know is that the thought seems to take away my feeling of dread.
“I will if I can, Cory,” she says, sounding very unsure about my plan. “I can try, but there are a lot of mothers who come here to pick up their kids. I don’t know if I can always be first.”
“But you have to do it — every day. Every single day. You have to.”
I wait for her to answer and can see that she’s trying hard to work it out.
“Okay, honey. I will,” she agrees.
“You’ll be first in line when school is out? Will I see your car right away?”
“Yes, Cory, I’ll be first in line.”
“Every day?”
“Every day.”
“Even forever?”
“Yes, even forever.”
Chapter 10
ONE DAY my worst fear comes true. Leaving school, I see a silver station wagon at the head of the line. A wave of horror shoots through my body. She’s not here. Something happened to Mommy!
I know that any second a teacher will come to tell me the bad news. She’s been hit by an airplane that fell from the sky. Or there was a terrible car accident. I start crying uncontrollably, shaking horribly.
Then I see my mother in the distance, pulling up to the school quickly. She drives as close as she can and stops behind the silver wagon to be . . . second in line!
My mother rolls down the passenger window and yells for me to come, but I’m frozen in panic, still sobbing and shaking my head.
She yells again, but I still don’t move.
A moment later, she steps on the gas and pulls around the silver car and ends up in a fire zone. Right away a crossing guard charges at her, as if she’s just driven through the school’s front window.
“You crossed the yellow line, lady. You have to move,” he shouts loud enough for everyone in the pickup area to hear him.
By the time I’m running to her, she’s surrounded by the crossing guard, a policeman on a bicycle, and a large, angry lady bus driver. In the middle of all the shouting and arguing, I dive into the car, and my mother takes off quickly.
On the way home, we don’t talk about what just happened, and I don’t really care anymore. I’m listening to a heavenly choir, singing words that thrill me.
She’s alive, she’s alive. My mommy’s alive!
And I’ve made it through another day without my mother getting sucked down into a manhole.
So Hard to Be Good
Chapter 11
NO ONE CAN IMAGINE how horrible this is. Every single day, something bad happens to me.
A few steps from the front entrance to school, a spasm shakes my shoulders and freezes me in place. I jerk my chin straight up to the sky as high as it can go and lock it in that position for the next three or four seconds.
When the spasm finally stops, I take a few deep breaths to relax, but it happens again, then again a few steps later. I’m only six years old and don’t know why my medicines aren’t helping me by now.
Nothing is working. I’m actually getting worse.
I’m incredibly discouraged that the day is starting off with my tics being so bad. I like going to school, and my first-grade teacher, Mrs. Wilkens, has been nice to me so far. My mother was able to have an early conference with her, and she “gets” my problems and knows how to deal with me.
Mom is always having to explain me, not only to the teachers but to everyone who sees me acting funny. Once she clarifies the situation, people usually get over their shock. But not always.
I try not to look back at the car because I know that my mother is still watching and feeling bad for me. She always tries to hide how worried she is, but these days she doesn’t look a
s happy as she used to. I wish I could stop being the way I am for her. She is the best mother anyone could ever have, and I love her so much.
School only makes my tics worse. There’s no doubt about that. Now there are so many tics we’ve started to give them names. The hopping tic, the bend-at-the-waist tic, the chin thrust, the scrunchy face. When I began the twisting tic, I felt something rip in my back, but I still had to keep doing it. I had to go to the hospital and be drugged asleep in order to make it stop. I never thought the twisting tic would end, but it did after a few days.
My tics keep changing all the time. They started mostly in my neck and face, but now they are all over my body and affect my large-muscle movements. There doesn’t seem to be any limit to how many kinds there are.
I do the chin thrust a few more times before getting to the front door of my school. The pressure is so strong on my spine it feels like it’s about to snap. This is not such a wild thought. I already know that my tics can make me hurt myself. Before I ripped the muscle in my back, I was biting down so hard on a bottom tooth that I broke it in half and had to be rushed to the dentist. The dentist didn’t believe what had actually happened.
Even though I’m trying hard to be good, this day gets off to a terrible start. During the spelling lesson, Mrs. Wilkens asks me to write the “word of the day” on the blackboard, and I feel proud to have been selected. I can tell she likes me, even though I tic a lot in class and require some extra work on her part.
When I get to the front of the class, Mrs. Wilkens pronounces the word of the day and asks me to write it.
My writing isn’t very good because I have trouble holding the chalk and forming the letters, but I always try my best to please her. And everybody else.
Before I start, I sound out the word in my mind, the way she told us to do. Then I turn to the blackboard and get the chalk ready.
But instead of writing the word of the day, my hand writes the word SHIT in great big letters.
For a moment I stand there, staring at the word in horror and shame.
I don’t know what just happened, only that something told me to do it. I know it’s one of the worst things I could have done, and I’m as shocked as anyone.
As soon as the kids see the word, they start laughing and pointing at the blackboard. I’m so embarrassed, I want to erase it, but I can’t.
“Sorry,” I say to Mrs. Wilkens. “Sorry. Sorry.”
My face contorts, and my eyes close and open fast and tight. Not only have I written a bad word on the blackboard but it’s making my tics worse. The combination of what I’ve written and my silly faces starts the other kids laughing harder and louder. Mrs. Wilkens isn’t laughing at all. She’s angry.
“Everyone be quiet,” she shouts. “Cory, take your seat. Now.”
“Sorry,” I say again, but I don’t think she’s listening.
Then I get the idea that it will be better if I make it look like I’m doing everything on purpose, as a joke. The kids will think that I’m funny and not just weird. So I make a few more silly faces, including a dopey grin. This makes the kids laugh again. I laugh along with them.
Mrs. Wilkens yells at us again, and this time the room goes completely silent.
I get to my seat and slip into it quietly. Inside, I’m feeling so bad that I let Mrs. Wilkens down when she trusted me at the blackboard. But I also realize for the first time that I can get kids to laugh with me instead of at me when I do something inappropriate. I can become the class clown.
One thing is for sure. From this day on, I can’t go to my classroom without thinking about writing SHIT or some other bad word. And I live in paralyzing fear of going up to the blackboard again.
Danger Everywhere
Chapter 12
I’M MAKING IT very hard for my mother to drive. We’re coming home from the YMCA, where she’s taken me to play basketball with some kids like me who don’t have much else to do or other kids to play with.
We’re on a narrow country road, and the traffic is bad. My mother is trying to make a left turn at an intersection, but there’s another car coming at us, and she has to decide if she can make it in time.
Already on this ride I’ve been sticking my head out the window and also making silly faces in the rearview mirror, like I used to do in my bathroom. This is getting my mother upset, but not as upset as when I need to open my door while the car is moving.
The reason I’m so wild today may be the new medicine I’m on. I’m getting anxious about starting third grade only a few weeks from now, so my doctor is trying a new drug called Haldol. This one was made for people with problems such as schizophrenia and big mood changes.
The Haldol is already having a bad effect, making me do strange, risky things — like now, when we’re driving.
Just as my mother is about to turn left, I have an urge to do something new that is unexpectedly dangerous. I suddenly touch the steering wheel and push it to the right.
When my mother feels the wheel turning out of her control, she pushes my hand away.
“Cory, you could cause an accident!”
This makes me want to touch the wheel even more, but I just tap it in a teasing, slightly threatening way.
All the while, an oncoming car is getting closer. By now I’ve distracted my mother so much that when she faces the road again, she has to make a faster decision.
She steps on the gas pedal, but I can see she’s so upset, she’s made a mistake. The car is coming at us too fast. We’re not going to get out of the way in time, and it’s too late to stop.
“Mom!” I call out. “Mom! Mom!”
My mother tries to speed up, but the oncoming car is right next to us. It slides sideways as the driver hits the brakes and tries to steer around us.
A thunderous crash rocks our car. It lifts the front end right off the ground. Suddenly I’m flying forward. My head slams hard into the windshield with a loud crunching sound. I see a blinding white flash, then little lights sparkle in my eyes.
“Mom?” I cry out in pain and confusion.
Chapter 13
WHEN EVERYTHING STOPS moving, there’s smoke spewing from the engine of the car that hit us, blowing crazily over the hood. A young woman pries open the door and steps out, crying and stumbling over her feet.
I’m dizzy from the hit against the windshield. I look over at my mother to see how she is.
Her head is resting on the steering wheel. I think she’s hurt very badly, and I know it’s because of me. But then she pushes herself back up and lets out a breath. She looks at me in wonder, then at the windshield. She sees the broken glass.
“Cory, are you all right?” she asks. I can tell she’s very afraid. I’ve never loved her more than I do right now. She’s so precious to me.
“I guess so,” I say, trying to be brave.
“Does your head hurt?”
She touches a large swelling on my forehead that I hadn’t noticed. Now I can feel it pulsing, but there’s no pain yet and it’s not bleeding.
“I don’t know why the air bags didn’t go off to keep you away from the windshield,” Mom says.
And I don’t know why I needed to touch the steering wheel.
Father, and Other F Words
Chapter 14
WHEN THE PHONE RINGS, I look away from the video game and listen to hear who’s calling. I hope that my mother will shout my name and tell me that it’s a friend who wants to play — but, as usual, it isn’t. Fourth graders are pretty much staying away from me nowadays. My tics are driving me and everyone else crazy.
Even Jessie is keeping her distance, and we’re usually pretty close. A few days ago, I was in the front seat of our car and suddenly hurled myself over the backrest and landed on top of her. I hurt her so much that she screamed in pain. I feel so bad when I have to do things like that to her. Jessie used to try to calm me down and hug me when I got restless, but now there are too many things I do that threaten her, and she can’t trust me anymore.
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br /> My father is spending more time with me, probably to make up for my not having any friends.
One afternoon, my father and I are in the basement putting together a new model car with a real gas engine. The car has hundreds of tiny parts, and he’s helping me find one that’s missing. After looking for a while, I’m suddenly aware of how close our heads are. The fact that they’re almost touching gives me an urge to do something wild and inappropriate, like spit in his face. Something is telling me to ruin our good time.
Out of nowhere the F word flies into my mind. It’s the worst word I can say, like the time I wrote SHIT on the blackboard at school. I try hard to hold back from saying it, but when the urge becomes overpowering, I lose the fight. Only it comes out as fu fu fu fu fu, as though I’m stuttering.
My father knows right away what I’m almost saying.
“What’s that about?” he wants to know with a disappointed expression.
“I’m not sure. It just came out.”
“Where did you hear that word?”
“Nowhere . . . I guess.”
He starts to tell me not to do it anymore but then stops short. He knows the first rule: telling me not to do something only makes me want to do it more.
“Sorry, Dad. Sorry. Sorry, Dad.”
“That’s okay, don’t worry about it,” he says. Shifting topics, he goes on, “Have you seen anything that looks like this?” He points to a picture of a part in the car instructions.
“Fu fu fu fu fu,” I answer.
“I bet it’s in here somewhere,” he says, ignoring the near curse and digging into a new pile of loose screws and plastic pieces.
I guess I’m lucky that I almost never feel the urge to curse in front of people like some kids do, and that when I start to, I can usually control it. If you have to curse out loud, you can’t be in a regular classroom or go to the movies or restaurants because people don’t understand. Just like when I give people the bird. No matter how many times my mother or father explains that I can’t help it, they don’t believe it.