Hi. I'm Jack. I'm 15, I'm a sophomore, I catch for the JV baseball team, and I have Tourette syndrome.

No, I don't swear. Most people with Tourette's don't. I'll get to that.

Since I was nine I have explained TS to about a thousand people. Teachers. Substitute teachers. Bus drivers. Umpires. Two different youth pastors. My little cousins every Thanksgiving. A lady at the mall who asked my mom if I was "on something." The guy behind us at the movies. So I decided to do it one time, properly, all the way through, and then I can just give people the address. If somebody sent you here, hi. This is the whole speech. You can read it in about ten minutes, which is faster than me explaining it at a bus stop.

The Rules · How I Found Out · Box Score · Behind the Plate · School · Please Don't · Jim Eisenreich · The Letter

THE OFFICIAL RULES OF TOURETTE SYNDROME
(as told by a guy who has it, not a doctor. My neurologist checked this section and said it was "accurate, if a little editorial.")

1.01 It's neurological. That means it's in the way the brain is wired. It is not a habit, not a behavior problem and not something I'm doing to be funny. Nobody knows exactly what causes it, but it runs in families a lot of the time.

1.02 A tic is a sudden movement or sound that you do over and over without choosing to. Motor tics are movements: blinking, shrugging, jerking your head, making faces. Vocal tics are sounds: sniffing, throat-clearing, grunting, humming, sometimes words.

1.03 To be called Tourette syndrome, you need several motor tics and at least one vocal tic, for more than a year, and they have to start when you're a kid. Lots of kids have a tic for a few months that goes away. That isn't TS. TS sticks around.

1.04 Tics come and go and change. Doctors call it "waxing and waning." I'll have a bad month and then a quiet month. Old tics leave and new ones show up, and sometimes an old one comes back from retirement. You never know who's batting next.

1.05 You can hold them in for a while. They come back. This is the one people don't get. Before a tic there's a feeling, kind of like the feeling before a sneeze, or an itch you aren't allowed to scratch. I can sit on it, sometimes for a whole class. But it builds, and it's exhausting, and when I finally get somewhere private they all come out at once. So yes, I can stop for a minute. No, that doesn't mean I could stop if I "really tried." I really try all day.

1.06 Most people with TS do not swear. The swearing tic has a doctor name, coprolalia, and only a small share of people with Tourette's ever have it. It's the one TV loves, so it's the one everybody's heard of. It's like thinking every baseball game ends in a bench-clearing brawl because that's what makes the highlights. (If you DO have that tic, it's not your fault either, and you don't mean it. But it's not me.)

1.07 Lots of us have teammates. Many people with TS also have ADHD, or obsessive-compulsive stuff (having to do things a certain number of times, or until they feel "right"), or both. I have a little of the second one. I have to tap the plate with my mitt in a certain pattern before every pitch. Most catchers do something like that anyway, so nobody notices. Perfect camouflage.

1.08 Stress makes it worse. So does being tired, or excited, or sick. Christmas morning is a tic festival. Concentrating hard on something with my body usually makes it better. More on that below.

1.09 It's not contagious, it's not from bad parenting, and it's not from sugar or video games. Somebody actually asked my mom that last one.

1.10 Boys get it more than girls. Several times more. Lucky us.

1.11 It's named after a French doctor, Georges Gilles de la Tourette, who wrote about it in 1885. So it's not new. People just didn't talk about it.

1.12 For a lot of people it gets milder in the late teens or early twenties. Not for everyone. But a lot. I'm 15. I am keeping an eye on the calendar.

1.13 Some kids take medicine for it and some don't. I tried one in fourth grade that made me so sleepy I fell asleep in the car on the way to the park, which for a ten-year-old is basically a medical emergency. Right now I don't take anything. That's between you and your doctor, and it's different for everybody.

HOW I FOUND OUT

I started blinking when I was seven. Hard blinks, like squeezing my eyes shut. My mom took me to the eye doctor, who said my eyes were perfect. Then I started sniffing, so I went to an allergy doctor, who did the thing where they scratch your back with twenty little needles, and I wasn't allergic to anything. Then the throat-clearing started. Ahem. Ahem. Ahem. All day.

My second grade teacher thought I was doing it on purpose. She'd stop the whole class and wait. She moved my desk next to hers. Once she made me sit in the hall until I "could be quiet," which I couldn't, so I sat in the hall for most of an afternoon clearing my throat at the fire extinguisher. My third grade teacher was nicer but she kept sending notes home saying I was "seeking attention." Believe me, I was not seeking that kind.

When I was nine our family doctor finally said the word Tourette's and sent us to a pediatric neurologist at the children's hospital. He watched me for about twenty minutes, asked my mom a hundred questions, asked ME a hundred questions (nobody had ever asked me what it felt like before), and said, "This is Tourette syndrome." That was it. No big test. There isn't a blood test or an X-ray for TS. It's diagnosed by what the doctor sees and what you tell him.

My mom cried in the car on the way home. I thought it was because it was bad news. She told me later it was because it had a name, and it wasn't my fault, and it wasn't hers, and somebody finally believed us. I didn't cry. I asked if we could get a Blizzard. We got a Blizzard.

THE BOX SCORE
Current roster, fall 1999. Updated whenever somebody gets called up.

I figure if I have to live with these guys I might as well give them uniforms.

And here's a line score for an ordinary Tuesday, by class period. My buddy Arthur kept count in a notebook one day last spring because he wanted to know. He got bored by sixth period. So did I.

How to read it: LOUD is how many times somebody turned around to look. HELD is whether I spent the period holding them in (L = a Lot). X at lunch means "too many to count, and who cares, it's lunch." Bio is always bad because it's right before lunch and the room is silent. Gym is easy. PR is practice, and that zero is real. Read on.

BEHIND THE PLATE

Here's the weirdest thing about my TS, and the best. When I'm in my crouch with the gear on and a pitch coming, my tics almost totally go away. Not just held in. Gone. My neurologist says a lot of people with Tourette's find that when they're really focused on something physical, like sports or playing an instrument, the tics back off. For me it's catching. Seven innings of looking at a pitcher and nothing in my brain but the count and where the runner is. It's the quietest my body ever is.

Then the inning ends, I take off the mask in the dugout, and they all come running back in like they missed me.

Catching is also why the Head Shake is a problem. In case you don't know baseball: the catcher puts down signs with his fingers to call the pitch, and if the pitcher doesn't want that pitch he shakes his head no. Last year a kid named Travis was pitching and I tic'd my head right while he was looking in, and he thought I was shaking HIM off, which isn't even how it works. He stood there totally confused. I stood there. The umpire took his mask off. Finally I called time and jogged out and explained, and Travis laughed so hard he had to walk around the mound. Now we have a deal: he's the only one allowed to shake his head, and if I tic, he just waits for me to put down the sign again. Travis is my pitcher this fall too. Best battery on the JV, and the only one with a written agreement.

Coach Perri has known since tryouts. My mom and I told him the first day. He said, "Can you block a ball in the dirt?" I said yes. He said, "Then I don't care if you blink." That's the whole conversation, and he's been great ever since. The only thing he did was tell the umpires at our home games before the first one, so nobody thinks I'm showing them up.

WHAT HELPS AT SCHOOL
for kids with TS and the parents of kids with TS

I have a 504 plan. If you've never heard of one: Section 504 is part of a federal law from 1973 (the Rehabilitation Act) that says schools can't shut out kids with disabilities. A 504 plan is a written list, agreed on by you, your parents and the school, of what the school will do so your disability doesn't get in the way of learning. You don't have to be in special ed to have one. I'm in honors English. My mom set it up when I started middle school, and we go over it every fall.

Here's what's in mine, in case it gives you ideas:

	Tests in a quiet room. Not because I need quiet. Because THEY do. If I'm holding in tics during a test, half my brain is busy holding and the other half is taking the test. In the testing room I can tic all I want and use my whole brain on the test. My grades went up a full letter in two classes the first year I had this.
	A pass to step out. I have a laminated card. If it's getting bad I put it on the corner of my desk and walk out, no questions, and get a drink at the fountain and let it all out in the hallway for a couple minutes. I use it maybe twice a week. Teachers were worried I'd abuse it. I'm 15. If I wanted to skip class I'd have better ideas than standing by a drinking fountain blinking.
	No points off for noises. No "class participation" grade docked because I hummed during a presentation.
	A seat by the door. So the pass doesn't turn into a parade.
	Subs get a note. The office puts a copy of our letter (it's at the bottom of this page) in the sub folder for every class.
	I get to choose about reading out loud. Some days are fine. Some days I'd rather turn it in written.

If your school doesn't know what a 504 plan is (mine didn't, at first), ask the principal or the school counselor for a meeting and bring a letter from your doctor. The Tourette Syndrome Association, which is the big national group, has stuff written just for teachers, and has chapters in a lot of states. Our chapter sent a speaker to my middle school once. It was kind of embarrassing and kind of the best day ever.

PLEASE DON'T

Tell me to stop. See Rule 1.05. If I could, I would have, around 1991.

Do an impression. It wasn't funny in sixth grade either.

Ask "are you okay?" every single time. I'm okay. Ask once. Then you know.

Talk to my mom about me while I'm standing right there. I'm the one with the brain. Ask me.

Say "but you don't look like you have Tourette's." What does that look like? This is what it looks like.

Feel like you can never laugh. When it's funny, it's funny. The Travis thing was funny. Laughing WITH me is fine. You can usually tell the difference. So can I.

What's nice: just keep talking when I tic. Seriously. That's the whole thing. Keep talking like nothing happened, because nothing did.

MY GUY: JIM EISENREICH

JIM EISENREICH outfielder Twins Royals Phillies Marlins Dodgers 1993 World Series (Phillies) 1997 World Champion (Marlins)

When I got diagnosed, my mom went to the library and came home with a newspaper article about a major league baseball player who has Tourette syndrome. I was nine and I played Little League and I read that article until it fell apart. I still have the pieces in a Ziploc bag.

Jim Eisenreich was an outfielder. He came up with the Minnesota Twins in 1982, and his tics were so bad, and people understood TS so little back then, that he had to leave baseball for a few years. He got treatment, and he came back and played for the Kansas City Royals starting in 1987. Then the Phillies, and he played in the 1993 World Series with them. Then the Florida Marlins, and he won the 1997 World Series. His last season was 1998, with the Dodgers.

Think about that. A guy who had to quit because of tics came back and played in two World Series and won a ring. With TS. In front of fifty thousand people and TV cameras. Every time somebody stares at me at the mall I think about him standing in right field in October with the whole country watching, and I figure I can handle the lady at the mall.

He's been open about having Tourette's and he's done a lot for kids who have it. He's not a catcher, which is his only flaw.

LINKS & HELP

The Tourette Syndrome Association. The national group, based in New York, with chapters all over. They have information for families, teachers and doctors, and they can help you find a doctor who knows about TS. If you think your kid might have it, start with your own doctor and ask about a neurologist.

Say It Anyway · Matt's page about stuttering, by a guy who does. Stuttering is a totally different thing from TS, but I read his whole page twice. The part about ordering the number three at every drive-thru because it was the word that would come out made me laugh out loud, because I know exactly that feeling of planning your whole life around one stupid thing your body does.

THE LETTER
My mom and I write this together and give it to every one of my teachers the first week of school. This is this fall's. If you're a parent, steal it. Change the tics.