My father’s distractions help me forget the F word, and we spend a happy time putting most of the car together.
“How’d you get so good at this?” he says when we’re done for the day.
“Dunno,” I answer proudly.
But I do. I can spend hours at a time doing something I love because it becomes an obsession. Sometimes obsessions can work for you.
In bed that night, I can feel the medicine helping my mind shut down. I think about what a mostly good day I had with my father, and then I remember the one thing that wasn’t so good.
Fu fu fu fu fu, I say softly into the darkness. Fu fu fu fu fu.
I don’t think this is a regular tic. It’s more like a thought I have to act on. Or maybe that’s the same thing. And I suddenly recall where I first got the idea of having to say bad things and having no control over it.
Our family had recently watched a comedy that made fun of different kinds of people with terrible conditions. One was a woman who kept cursing out loud, and she explained that it was because she had Tourette’s syndrome. I remember being so surprised.
“Does Tourette’s make people say bad words?” I whispered to my father.
He looked really angry, but not at me.
“No, this is a bad movie, Cory. They make fun of people who can’t help themselves, and they shouldn’t.”
And that was the way I learned about the cursing tic. It’s called coprolalia.
I go to sleep wondering why grown-ups would want to make a movie that pokes fun at people who can’t help themselves. And I wonder if they still would if there was somebody in their own family like me.
When Good Turns Bad
Chapter 15
IT FEELS STRANGE and almost wrong to see the hallways so empty and silent at this time of day in such a big school.
I’m late for class because the extra Benadryl I needed to take last night made me oversleep. It’s the end of fourth grade, and it’s getting harder to stay in school for the whole day, but I want to try. Yesterday I was twitching and jumping around so much that my shirt was soaking wet by sixth period.
On the way to class, I see three girls around my age whom I haven’t noticed before. They use the word like about ten times in five seconds. And I, like, go with him, and, like, oh my God! That’s, like, so awesome.
I wonder — do they have tics? Is saying like really a tic? If so, I know an awful lot of other kids who have it.
As they pass by me, I bend at the waist and jerk my head to one side. The girls stop their conversation and smile as they go by, but after they’re farther down the hall, I can hear them giggling. I don’t know if it’s because of me or something else.
Still, I feel pretty good about being in school today. I don’t know if it’s my new medicine or not. I’ve been completely off Haldol for a while, and Dr. Pressler has replaced it with Cogentin. This is yet another medicine made for something else, in this case for people with Parkinson’s disease. Parkinson’s sufferers have problems with the way their bodies move, so I guess that’s a good reason to try it on me.
Dr. Pressler will do anything to help. She’s very disappointed that she hasn’t found a great medicine for me like she has for hundreds of other children.
So far Cogentin is better than Haldol. Or maybe it’s just that the Haldol is wearing off. I never know. A lot of my wild behavior has stopped, especially the feeling that I might need to curse. Haldol gave me an unbelievable appetite. Now my body is doing some new things. I guess that could just be a sign of getting worse as I get older.
The real problem is that it’s hard to know what’s causing what, with everything going on at the same time. There are all the different medicines with different doses and combinations, and the time of year. Spring usually seems to be the worst. Then there is the stress of school and of the way Tourette’s always changes, getting worse, then better, then worse again. It’s called waxing and waning. With all this, none of my doctors have been able to figure out precisely what’s going on, so whenever they prescribe a new medicine, it’s always just a guess.
The best thing about school this year is my teacher, Mrs. Erlanger. She never ever lets the other kids make fun of me. She’s explained to them that just because my body moves, it doesn’t mean there’s anything wrong with me, and that it’s no big deal.
Today I promise to be extra good in class for her. Today I’m going to be a “Tourette’s angel.”
Chapter 16
BY THE END OF THE MORNING, things are going well. Mrs. Erlanger has called on me almost every time I’ve raised my hand. She praises me a lot and never lets my ticcing bother her. She tells my mother that she loves the way I always contribute in class. I can’t tell you how great that makes me feel — like I’m a regular kid.
Things change at lunch.
I see my two old neighborhood friends sitting alone at a table, and there’s an empty seat next to them. I sit down and say hi. They look at each other, then just get up and leave. They never say anything; they just take off. I feel so bad I can’t stand it. They go to sit with their other friends.
After that I don’t want to try to sit with anyone. Most of the time I eat alone anyway, except now and then I sit with William. He’s a nice kid who doesn’t seem to have friends either. William has learning disabilities.
Eating by myself isn’t that terrible, mainly because I love the food my mother packs for me. Today my lunch box is stuffed with all my favorites — fruit salad, cookies, and sandwiches my mother makes herself.
Back in class, Mrs. Erlanger is slowly reciting a poem for us and wants us to print it out as she speaks, but I’m having trouble. The pencil is clumsy in my hand, and I need my words to be exactly on the blue line, not even a little above or below. I also need my letters to be perfectly formed, and since I can never get it right the first time, I have to erase and start over. I’m doing that so much today that I’ve made holes in my papers. I hate the sloppy holes so much.
Soon I’m so far behind that out of frustration I break my pencil in two and stop working. I’ve been breaking pencils in two all the time lately, at home and in school, even when I’m not using them to write. I don’t know why. I just do it.
To try and relax, I begin to drum my fingers on my desk. I drum out a series of beats over and over, so after a while it attracts attention.
Mrs. Erlanger looks up and sees that it’s me, then gives me a little smile and goes back to her reading.
One of the good things she’s done for me is to make me the class messenger. This is a job the other kids want since it gets them out of class for some free time. When Mrs. Erlanger sees that I’m getting a little out of control, she usually says, I need someone to go to the office for me. Cory, would you mind? So while everyone else continues studying, I get to leave before I disrupt the class any further, and I go chill out in the nurse’s office.
As I keep up my drumming, Mrs. Erlanger seems to be getting annoyed. I guess it can get on anyone’s nerves after a while. It even gets on mine.
I soon realize that I’m getting stuck on drumming, and I stuff my hand in my pocket to stop. I’m trying so hard to be good.
I look around and I see a kid named Jerome grinning at me. He sits a few seats away and is one of the boys who likes to get me in trouble.
When I stop drumming, he makes a low chirping sound that I can hear but the teacher can’t. It’s similar to one of my throat tics, and thinking about it makes me start doing it, which is just what Jerome wants.
Soon I chirp loud enough for the other kids to hear, and I make a silly face so it looks like I’m doing it on purpose — the class clown again.
Now I’m chirping so much a bunch of the boys start to imitate me, and that does it for Mrs. Erlanger. She jumps out of her chair with an angry look I haven’t seen before.
“This is not funny. I need you all to be quiet. Do you understand?”
The room gets so quiet that I can hear somebody outside mowing a lawn. At first I�
�m relieved that the laughing has stopped, but then the silence gets to me and becomes its own problem. I need to do something to break it. I know this is a terrible time to make a noise, but that’s what the urge is all about.
Finally it gets so strong I can’t stop it. My throat makes another chirp, then another one, even louder.
The class holds its breath, waiting for Mrs. Erlanger’s next reaction.
“I think it would help if you could control that, Cory,” she says in a sharp, slightly strained voice.
I can’t believe it. Are you asking me to stop? She knows I can’t control it, and telling me to only increases my need to do it. I feel like I’ve suddenly been attacked by the only person in school I can trust.
The tension makes me chirp again, even louder, and now I’m stuck in a terrible cycle I can’t get out of.
“I think a time-out will do us all some good!” Mrs. Erlanger shouts over the noise. “Cory, why don’t you spend a few minutes outside in the hall?” she says, and points to the door.
Her order stuns me. I’m supposed to be a messenger when this happens, not punished. Everyone knows the hall is punishment. I’m confused and hurt, really hurt.
I get up to leave and grab my book bag without looking at it, but the bag is open and all my books and papers spill around me on the floor. This starts another round of laughter from my classmates.
Nothing is making any sense. My favorite teacher is mad at me and she’s making me act worse. My classmates are provoking me into doing things they can make fun of. I’m lost and embarrassed and ticcing wildly. I’m so afraid, I can’t stand it.
Then I realize that another bad feeling is starting up inside of me.
I’m beginning to get angry. Very angry.
“ ’Night”
Chapter 17
I LOVE MY SISTER — she’s my best friend — but sometimes it’s so hard for us, unbelievably hard and unfair. I can cause her a lot of trouble and pain, and every now and then she starts to get even.
I don’t know why she picked tonight to try to trick me. It’s bad enough that a new tic is making me twist my shoulders so hard that the bed creaks. Add this to all my other nightly thrashing around, and my bedposts are getting wobbly enough to collapse.
But just as the clonidine and Benadryl are finally beginning to work, I hear Jessie from her bedroom, which is right next to mine.
“ ’Night, Cory,” she sings out a little too happily, and my eyes pop open.
There are certain phrases people say to me that I always have to respond to. Saying good night is one of them, and Jessie knows it.
“ ’Night, Jessie,” I say as quickly as I can, trying to make it sound as if it’s the last time we’ll be doing this.
I’m about to drift off when she does it again.
“ ’Night, Cory.”
“Stop doing that, Jessie!” I yell back, and quickly follow it up with another “ ’Night, Jessie.”
This isn’t like her. Jessie is almost always on my side, but lately things are changing. She used to let me join in when her friends came over to play, but now she takes them right to her room and locks the door. I guess it’s hard for her to have a brother like me when she’s trying to be regular.
Yesterday she deliberately got me in trouble. When my mother wasn’t around, she told me that it was okay to pee in the bathroom sink. And when I did, she told on me.
It’s easy for Jessie to trick me, just like she’s doing tonight. She’s smart and plans ahead much better than I do. A while back, she made up a rule that whoever yells Front seat first gets it when we go for a ride. I agreed because I thought I’d always remember, but so far she’s won about a hundred times in a row. Occasionally she remembers to call Front seat when we’re still in the house. And every time she wins, she laughs in triumph.
I stay awake for a long time, waiting for Jessie to say it again, which is just as bad as her doing it, but finally, when nothing more happens, the medicine takes over and I drift off into . . .
“ ’Night, Cory.”
The gleeful little call splits open the darkness, and I sit up in bed and yell for my mother, who shows up fast.
“What’s the matter, Cory? Are you all right?”
“Jessie won’t stop saying ‘ ’Night, Cory.’ She’s doing it on purpose.”
Mom ducks into Jessie’s room and scolds her until she promises to stop.
Finally, sleep arrives, and with it my best dream. I’m riding a motorcycle on a highway that goes on forever. I’m traveling faster and faster, bent down over the handlebars, passing everyone else. I’m not thinking about anything as the cars and trees fly past — except the thrill that’s rippling through my body.
Eventually I’m going so fast that my motorcycle races ahead of the sound of its roaring engine, and I’m moving in a state of blissful quiet, as if I’m the only one at the very tip of a spaceship. A wonderful voice talks to me, telling me that this is how happy I will be someday. This blessed freedom will be mine.
And then comes another voice, from another place and time, a softer one, just loud enough for me to hear.
“ ’Night, Cory.”
Part Two
ONWARD AND DOWNWARD
The Lure of Branches
Chapter 18
I STARE UP at the two-hundred-year-old tree in my backyard, almost out of breath from the excitement. It’s more than a hundred feet tall. I wonder how many storms it must have survived to still be here, waiting for a barefoot kid with an unusual urge to climb.
The tree trunk has to be at least twenty feet around and looks like a huge elephant’s foot. I wonder if I’m really crazy to be doing this, but I don’t think so. Crazy is someone who kills people because his dog tells him to.
I have to climb because there’s no other way to get rid of the urge that’s building up inside me. It’s as if I have wires in my brain that light up at the thought of it, but they’re wired to the wrong places and don’t allow the electricity to turn off.
So this isn’t about being crazy. This is about bad wiring.
Right now I should be at school with the other fifth graders, but today I can’t sit still long enough to make it through the whole day.
So this afternoon, while the other kids are learning English, geography, and math, my assignment is climbing.
Lucky for me, the kids who lived here before left a homemade rope ladder that’s still attached to the first branch. I stand on the rope step and can tell it’s strong enough to hold me.
I hook my foot around the next rung, but right away my leg shoots straight out and slams into the tree. This is what I’m most afraid of, the excitement making my body spark more than usual. A wrong move a hundred feet in the air will make the trip down a lot faster than the climb up.
On the next try, my leg is okay, and I keep going until I run out of ladder and can grab hold of the first branch and pull myself into the tree.
The next few branches line up one above the other, and I climb them quickly. Then a large gap stops me.
My bending tic hits all at once, and my stomach clenches so hard that for a few seconds I can hardly breathe. The thrust forward shifts my weight so much it throws me off balance, and suddenly I’m falling.
My whole body jerks to a stop when my legs get tangled in a thick bunch of branches and end my fall. It all happened so fast that I didn’t have time to be scared, but I am now that it’s over.
I stay very still and suck in a few gallons of air.
I look down and see just how bad an idea this whole thing was. Below, there’s a pattern of small light and dark rectangles, and I realize they’re the roof shingles on my house.
I’m much higher up than I thought, and I wonder how I’m going to get down.
That thought makes me need to test the danger of a fall. I let go of the limb I’m holding on to for just a second until I start to lose my balance. Then I grab it again at the last moment. I test again by letting go for a longer time and almost don’
t get my grip back before it’s too late.
But I still need to climb. I wrap both arms around an overhead branch and hook one leg around it, then the other, and in a moment I’m hanging upside down.
All at once a big muscle in my left leg contracts, making it straighten out. Now only one leg is attached to the tree, and I’m still hanging upside down.
I dangle there, high off the ground, not knowing if I’m going to fall. I wait for the spasm to stop, then I wrap my leg back around the branch and haul myself right side up.
I don’t know how long I’ve been climbing. My shirt is soaked with sweat.
The muscles in my arms are tingling from the strain of holding on for so long, but being this close to the top elates me.
I push apart a final thick clump of leaves, and a small space opens up. Now I can see where some of the highest branches end. The branches here are thinner, and I don’t know if the last one will hold my weight, but I’m not going back down until I find out.
I take a deep breath and go for it. It bends but doesn’t break. And I’m there!
I actually begin to relax. The breeze is like a silk scarf on my skin. Far below, the earth looks like it’s moving back and forth, but it’s only the treetop swaying.
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.
Against Medical Advice Page 4
