There's more to Traci than Tourette's

"Sometimes, I go in just to see her body be still," Mrs. Salisbury said emotionally. "It's heart-wrenching. You just really wish you'd wake up and it'd be gone."

On the other hand, the bodily spasms of Tourette syndrome (TS) are hardly the first thing people notice about Traci. Her quick smile, confidence, and packed schedule of school, sports and extracurricular activities rate much higher. So would her philosophy about being a teen with TS.

God and Traci

Traci doesn't let TS slow her down. She's an honor student at Columbia High in East Greenbush, a lector and member of the youth group at Holy Spirit parish there, and a tutor to pint-sized students at Genet Elementary School. And she plays three sports: soccer, basketball and softball.

At the moment, she's trying to keep her grades up to get into Duke University, hoping to become an elementary-school teacher. In her "spare time," Traci's also a member of several community service clubs at school.

She joked about the joy of building a house through Habitat for Humanity: "I loved doing that! We learned how to do sheetrock!"

Tourette's signs

"In seventh and eighth grade, kids would say, `What's your problem?'" Traci remembered. "I just had so much built up inside me. I made so many excuses."

Three years ago, her parents, Patty and Jim Salisbury, found a doctor who diagnosed Traci's condition as Tourette syndrome, a neurological disorder that hits one in about 1,000 children -- two out of three of them boys. Its onset is usually between the ages of six and nine. Traci has a 13-year-old brother, Jeff, who doesn't have TS.

The main symptoms are facial or body "tics" (spasms), though many people have heard of the condition because some people with TS have verbal tics that are more obvious. Traci's TS takes the form of physical tics.

Out of hiding

She also turned to God: "In the last year, I can't tell you how many prayers I'd say."

Finally, the teen couldn't take keeping her secret any more. She threw a sleepover party for her friends, stood up in the middle of it and said, "You guys, I have to tell you something."

"It was a huge relief!" Traci told The Evangelist. "When I told them, they said, `We thought you were sick!' I said, `You guys aren't going to not be my friends any more?' And they said, `Of course not!'"

Acceptance

The teen also told her teachers about her condition. They've been uniformly supportive, she said, though it can be hard when a substitute teacher comes in. Last year, when Traci had a severe TS episode in math class, a substitute asked aloud whether she needed to step outside, embarrassing her.

Since her diagnosis, Traci has had other ups and downs. Some medications have made her so sleepy that she once nodded off in math class every day for weeks. She noted wryly that "the teacher completely understood; he'd just nudge me."

Another anticonvulsant medication, Klonipin, turned out to be addicting. When Traci was put on it last winter after having "full-blown" TS symptoms and then taken off, she ended up sweating and shaking with withdrawal, and had to be put back on the drug at a lower dosage.

However, the teen said she has confidence in her doctor, who "treats the patient, not the disorder."

Finding balance

"Sometimes, me and her dad have to say, `Traci, slow down!'" Mrs. Salisbury said, shaking her head. "She makes my head spin."

Traci said that often, while studying for a big test, the stress make her tics so severe that she has to take a break and listen to music or play basketball until she's able to refocus.

She calls TS "this unbelievable energy inside me. In a way, it's good; in a way, it's this unbelievable burden."

Example for others

"I'd like to be that," she noted. "Sometimes, I say, `I'm going to be the person everyone can look up to.' And sometimes that can just drag on me. I'm a perfectionist; I put a lot of pressure on myself. Every once in a while, I'll get down in the dumps -- [for example,] basketball tryouts are next week."

Dealing with social stress is a hallmark of being a teenager, and Traci does sometimes agonize about how her TS affects how people see her.

"It's tough, because you don't know what people are going to think of you," she said. "You walk in the mall and think people are going to think, `Weirdo!'"

Questions

Traci's standard answer is along the lines of, "I have this thing called Tourette's; something in my brain doesn't work right, and it makes my body move like that sometimes. When you notice it, try to ignore it, okay?"

Guys are high on the list of stressors, too. Sometimes, Traci worries about dating, an activity she hasn't gotten around to yet.

"I have a lot of guys I'm friends with," she explained. "But I think, if we're going out, are they going to be able to handle [me saying], `I'm having a bad day; can you help me with my disorder?'"

Support system

Mrs. Salisbury noted that having TS "has pushed Traci to mature quickly. She's a very strong person."

Traci readily agreed. "I've learned from it," she told The Evangelist. "I've had many experiences that have made me stronger. The way people judge other people with Tourette's or ADD [Attention Deficit Disorder]....If you don't know if someone's moving like that because they have a disorder, don't be quick to judge."

Future plans

In the meantime, she's working furiously to promote understanding of TS. On Jan. 5, she's persuaded the staff of radio station WFLY (FLY 92) to hold a community basketball game to benefit TS-related organizations.

"Since I have it, why not try to educate people about it?" she remarked.

TS, however, remains just a small part of Traci's life. "People see past that," she said, smiling. "That's one minor detail."

(Traci's website, http://members/tripod.com/traci010, includes links to more information about TS.)

(11-08-01) [[In-content Ad]]