I touch my nose once, but this time that’s where the urge ends. My arms come to rest on my stomach.
The runners set themselves, ready for anything.
People on both sides of the field are standing and shouting.
Something inside me has changed and gotten really calm. I’m out here in a place I love, with the wind on my face, playing my favorite game in the world. This is tense, but I’ve been through a lot worse and come out alive. I can survive this, too.
I force my attention completely on the catcher’s mitt. Two seconds later I reach back with the ball, then let it go with more power than I’ve ever had before. The ball flies so straight and so fast I can hardly see it. Even before it gets there, I know that nothing can touch it.
And nothing does.
“Strike three. You’re out!” the umpire yells at the batter.
The inning is over.
God, I love baseball.
Chapter 22
IF THIS HAD BEEN THE END of the most perfect afternoon in my life, it would have been more than enough to make me deliriously happy. But right now our team is still losing by two runs, and it’s our final at bat.
I’m at the plate with two outs, and a new set of bending and twisting tics has set in. I look at the two guys on base and don’t want to let them down.
Maybe it’s the lesson I learned on the mound about not letting anything bother me, but when I see the ball coming in, I have only one point of focus.
When I swing, I feel solid impact on the fat part of the bat. As the runners take off, the ball sails high in the air. It keeps going farther than any other ball has gone at this field, right over the center-field fence and into the parking lot. I just hit a home run!
When I get to home plate and break free from my teammates, I run to my family at the chain-link fence. Our fingers touch through the mesh, and they tell me that I’m great.
My God, I did something great, I think to myself.
A short time later, a friend of our family taps me on the shoulder. “I got this in the parking lot,” he says, “so you never forget.”
I take the home-run ball with a happy grin and thank him.
It’s been years, and I still have the ball. I will always remember that special day, maybe the best day of my youth.
No, not maybe. It was.
To the Ends of the Earth
Chapter 23
THE GOOD DAYS ARE FEW and far between, and maybe that’s why I remember them so vividly.
It’s late on a Sunday afternoon in the summer before seventh grade. My father and I are in a race against the sun somewhere in the mountains of northeastern Pennsylvania. We’ve been looking for a lake called Wallenpaupack, but after what is supposed to be a two-hour drive turns into a three-and-a-half-hour drive, we’re about to give up.
The tension in the car is like electricity flowing all around us. Out of anxiousness, I start to touch the steering wheel again, even though we’re going fast.
My father doesn’t mention it at first, but the next time I reach for the wheel, he can’t stop himself.
“You can’t do that, Cory. Do something else,” he says, suddenly very annoyed.
Even though I realize that this urge seems dangerous to someone who’s driving, I have an instant angry reaction to his warning. He knows it will only increase the urge. And he should understand by now that I would never again pull the wheel to one side, as I almost did with Mom right before our accident.
His outburst is especially surprising given that my father and I are getting along very well this summer. When I do something silly or dangerous such as grabbing at the steering wheel or shooting paintballs at our white garage doors, he knows how to handle it. He stays calm and asks me to think about the consequences of my actions, then walks away until I chill out.
My mother almost never gets upset with me, no matter what I do. She simply talks to me until I relax. I just wish she’d stop worrying so much. Sometimes I see a sadness in her eyes that makes me think my problems are never going to end and that they might even make her sick.
I move once more for the steering wheel, but this time I’m able to stop myself from touching it. Then the need goes away.
I still can’t believe my father is taking this long road trip with me. He’s doing it because he wants to spend some time together but also because I have nothing to do at home. My few friends have been going to the town pool and having parties and not inviting me, so my father has again taken over as my friend.
Chapter 24
THE SKY IS GETTING DIMMER. Ever since the idea of Jet Skiing came up, it’s become a thrilling obsession for me. It’s like riding a motorcycle full speed, only on the water. But we’re obviously losing the race against time.
“I’m not sure we’re going to make it,” my father says. “It wasn’t supposed to take this long. Sorry, Cory.”
His words are like a knife sinking very deep into my stomach.
“We have to do it, Dad. Will you still try?”
He takes his eyes off the road to look at me. “I’m trying, Cory.”
“It’s okay,” I surprise myself by saying. “It’s okay if we can’t do it. Thanks for trying, Dad.”
My father’s expression suddenly gets more determined.
“I didn’t say we were giving up.”
He sets his eyes back on the road and pushes down on the gas pedal.
A half hour later, it’s getting more apparent that my dream isn’t going to happen today. I’m making a chirping sound to get the tension out of my throat, and my right hand is shooting into the air over the dashboard.
Then a miracle. We see a road sign for a place called Hawley. My heart pounds in my chest. That’s the name of a town near the lake.
“We have a chance,” my father says with new energy, “but they said they only stay open until no one wants to ride.”
That’s a possibility I don’t even want to think about.
Lake Wallenpaupack appears at the end of the road like magic. It’s an endless body of water that looks like motor oil in the dimming light. The evergreen trees on a distant shoreline seem about a thousand miles away.
Two college-age boys in swimsuits are on the dock, one sitting, the other tying up the last of six or seven Jet Skis for the night. No one else is around. No one is on the lake. My heart is sinking faster than the setting sun.
“I know it’s late, but I’d really appreciate it if you’d let us take a ride,” my father says to the boy on the chair. “We’ve been driving for hours.”
The two guys look at each other. Not happy.
“We’re closing up for the night,” the chair guy says. “We open at eight tomorrow. Where are you staying?”
“We have no place to stay.” My father nods in my direction. “I promised my son we’d be able to ride. It’s really important to us.”
The tension in the air makes my body twitch. Maybe they notice, maybe not.
After a long silence, the boy in the chair gets up and trudges to a small shack on the dock that serves as the office. My father turns to me with his eyebrows raised, and we follow him.
“I’ll need his ID,” the boy tells my father.
This is an unexpected shock. Age matters, even at such a faraway place as this. With all the weight I’ve gained, I’m big for my age, but I still look too young for this.
“We left so fast we forgot to bring it. But don’t worry about that. He’s ridden dozens of times. On vacations.”
“I could get in trouble.”
“I’ll take full responsibility. I’ll sign a paper if you want.”
The boy thinks about it for a time. “I’ll need a hundred-dollar deposit. You’ve got a half hour.”
Chapter 25
THIS IS HEAVEN for me.
My dad and I are out so far on the lake that I wonder if we can ever find our way back. We’ve definitely been going for more than a half hour. The sun has set, and the golden sky is the only thing lighting up the water.
If we wait too much longer, we’ll be riding in the dark.
I’m the one who has taken us out this far from shore; my father is just following me. I can tell he’s nervous about being in such deep water. Even I have to admit this water is very weird. It feels alive with things moving and wriggling under the surface like huge fish. The strangest thing is that although there are strong waves, there’s no wind at all.
The surface swells have valleys in between that sometimes take us out of sight of each other until we rise again. When I get caught halfway up the side of a swell, it feels like the Jet Ski is going to tip over.
My father must be feeling it worse than I am. He keeps staring at the sky and his watch — although when I look back at him, he waves at me as if he’s happy to be here.
Soon the sky is so dark that even I can feel a sense of danger approaching. My father motions to me, and I drive over to where he is. The water has now become almost motionless. We gently bob up and down with the sides of our skis touching.
“We have to go back now.”
I nod in agreement.
The current catches hold of our Jet Skis for a moment. It gently turns us side by side until we’re both looking out into the horizon, now only a thin slice of orange through the trees. In the stillness of a world that belongs only to us, I feel endlessly grateful toward my father. I don’t know any other fathers who would have done so much to make this dream happen, or put up with me day after day.
“Thanks for doing this, Dad.”
“I love you, Cory.”
Then we slowly head back.
Ups and Downs
Chapter 26
OF COURSE, for every good time, another bad one isn’t far off. That seems to be Cory’s Law or something.
We’re driving to one of the best hospitals in the country for people who can’t control their body movements. Suddenly I don’t feel so alone.
I can’t believe there’s an entire hospital for people whose bodies move in unusual ways. I wonder what the other patients are like, and if there is anyone there who does stranger things than I do. I doubt it very much.
I’m coming here because in recent months middle school has become overwhelming, and I’ve started missing whole days at a time. I’ve even stopped playing baseball.
Risperdal has become my doctor’s main weapon in the battle against my mind. It’s calming me down and has stopped a lot of my wild behavior, but I’m paying a price.
At one and a half pills, I developed a new tic of head twisting and foot tapping in sequence. My weight had already gone up about forty pounds.
At two and a half pills, the foot thing stopped, but my tics became wilder and more unpredictable than ever.
Then came three pills. And four.
Suddenly I’ve become afraid of everything I used to like. I’ve always loved the ocean — the bigger the waves, the better. Lifeguards have had to order me out of the water after everyone else has left because of undertow or rip currents. With the increase in Risperdal, I’ve become afraid to go into even the calmest water. I’ve also started to suffer from vertigo and was so terrified of taking the ferry to Martha’s Vineyard that I almost ruined our family vacation. I heard Dad saying to my mother that Risperdal took away my courage.
Still, in the hope that Risperdal would eventually help, we got up to six pills a day, a dose that would make most people catatonic. One time my father accidentally took a single pill thinking it was something else, and he slept almost all day.
The high dose calmed me down enough to stop me from bouncing off the walls, but I began to shake my head so hard I was sure I’d damaged my brain. The increased dosage also shot me up to nearly 230 pounds, a lot for somebody who’s five foot seven. I was afraid of doing anything that had the potential to hurt or scare me. And that’s when enough became enough.
The decision to start taking me off Risperdal was harder than the one to put me on it. Internet chat rooms are full of horror stories about the physical pain of withdrawal from this drug, even when it’s taken away a little at a time. And the accounts are all true. There were days when I screamed, and cried, and just wanted to die. My depression deepened, and I began to believe that the only purpose of my life was to be in pain.
Given how bad the withdrawal was and the fact that Risperdal had at least helped my behavior, I had to start back on some of it again. We also tried it in combination with old and new drugs such as Orap — which made me totally wild — and Zoloft and Klonopin. So many that I can’t remember them all. And nothing helped.
During this period, out of desperation, my parents found a chiropractor two hours away in Connecticut who said he could help my movement disorder by snapping a part of my upper spine. My father was worried about that and asked the chiropractor to demonstrate it on him. It was such a violent snap that my father said he actually saw stars, and he decided it was too risky for me.
After that, we found an unusual environmental allergist in the southern part of our state. He believed that my problems were caused by ingesting the wrong foods or chemicals, and that if he could figure out what they were, he could fix me. He may have been right, but I’ll never know. He wanted me to go on a diet that was too strict to even try. With Risperdal making me hungry all the time, and with eating now an obsession, the thought of losing my favorite foods was unbearable.
The most extreme thing we almost tried came up while we were on vacation in Florida. A social worker by the pool noticed my movements and introduced herself. She said that I should try swimming with dolphins because they had healing powers that could take away my Tourette’s. It sounded crazy, but she seemed pretty smart. My mother tried to set it up, but all the time slots were filled. Otherwise I would have gone for the swimming-with-dolphins treatment.
Which explains why I’m here today, turning onto the side street that leads to the Stringer Clinic for Neurological Movement Disorders.
It sure sounds like my kind of place.
Hope Against Hope
Chapter 27
AS MY PARENTS and I travel up the elevator to the third floor to see the doctors, my tics get the message and shift into high gear. The doors open onto a long, narrow waiting area with a single wooden bench that runs along one wall.
It’s before nine a.m., so the glass door that leads to the inner office is still locked. We’re always early for these appointments. I guess that’s because we’re always so hopeful.
We sit and wait in silence. My father is thumbing through old magazines; my mother is trying to look optimistic, as usual planning to spend her whole day with me. Since my head started shaking all those years ago, she’s given up her own business, writing, and any thought of a career.
The next time the elevator arrives at our floor, a teenage boy comes out with a condition no one would believe unless they saw it for themselves. My first thought is that he must have dropped something and is trying to pick it up.
But as he leaves the elevator, he doesn’t stand. Instead, he moves forward like an animal. He places both hands ahead of his body on the ground and keeps them there until his legs catch up. This allows him to take another stride. Amazing as it seems, this must be how he moves all the time and why he’s here. This is his movement disorder, as big an understatement as there has ever been.
After three steps, he jumps up on the bench and swings his legs around to face forward. He does this so effortlessly it’s clear he must have done it a thousand times.
Once he’s settled on the bench, he looks straight ahead without checking our reactions. That’s something I totally understand. I’ve learned how not to see people staring at me, too.
Not wanting to embarrass him, I study him out of the corner of my eye. Sitting, he appears to be completely calm and normal. He’s older than I am by five or six years, which would make him about eighteen. He’s good-looking, with intelligent eyes.
His mother is showing a lot of self-control, too. My heart goes out to both of them. I can’t imagine what it’s lik
e to get up every morning knowing that some power you can’t control will force you to move around like a gorilla. All he probably wants to do is just stand up straight. How cheated he must feel, how he must hurt inside. I wonder if he ever runs into anyone worse off than himself, like I just have. I don’t think I could survive what he has, but I guess I’d find a way.
I’ve thought about what a place that treats movement disorders would look like. I pictured the laboratory in Frankenstein. In reality, the building is like a large city hospital, all cement and windows. The closest parking is a few blocks away, so by the time I hopped, skipped, and jumped to the front door, I was tired out, and the day hadn’t even started yet.
My mother has told me that the Stringer Clinic is one of the best hospitals in the world for research into unusual body movements, especially Parkinson’s disease. Since I’m beginning to believe that any cure for what I have will eventually have to come from me, I’m mainly here to please my parents.
Our appointment with the well-known Dr. Holmes has been a great accomplishment for my mother. At first they told Mom that the doctor was too busy to see me, but when Mom described how severe my movements were and started to cry, they agreed to make room in the doctor’s busy day.
This is a truly depressing thought. Being able to attract the attention of someone this famous only clues me in to how extreme my case must be.
Chapter 28
DR. HOLMES SEEMS TO BE involved more in research than in the actual treatment of patients. Her biography on the Internet is very impressive.
In a short time, I’ll wish that I’d never heard of her or her hospital. I’m about to learn the meaning of the phrase living hell.
In theory the hospital’s advanced research and treatments for Parkinson’s disease are important for me because that illness also causes involuntary movements. Like Tourette’s, Parkinson’s has something to do with two chemicals the brain produces, dopamine and serotonin. We’ve been told that Dr. Holmes has had great success treating Tourette’s patients, too.
Against Medical Advice Page 6
