Staff Photo by Allison Carter/Chattanooga Times Free Press - Dec 6, 2010 - Rhett Sewell is a student at UTC with Tourette's Syndrome. Sewell goes to various places to speak about Tourette's Syndrome and volunteers with children who have the neurological disorder.Sometimes, Rhett Sewell introduces himself as Rhett with Tourette.
"My name," the 20-year-old University of Tennessee at Chattanooga freshman, said, "was a lovely stroke of irony. Why not use it in a positive sense?"
According to the National Tourette Syndrome Association, the condition "is a neurological disorder .... defined by multiple motor and vocal tics lasting more than one year."
At times, Sewell blinks his eyes rapidly. Other times, he shakes his head or tosses it almost violently. Sometimes he'll make staccato noises or clear his throat. From time to time, he raises his arms above his head.
That hand-raising gesture he actually picked up from a friend. "For lack of a better word," he said, "you can 'adopt' somebody else's tics."
The same friend adopted his vocal tic.
"Serves him right," Sewell quipped.
HOW IT HAPPENS
Tracy Colletti-Flynn, public relations manager for the Tourette Syndrome Association, says signs point to the disorder being related to dopamine, a brain chemical.
Sewell explained: "We are completely at whim to the signals we are getting from our brain."
He said he can feel the tics coming on, but trying to control them is like trying to suppress a sneeze.
"I'm the one making the movements, I'm the one making the noises, and I'm doing that in response to the signals I'm getting from my brain," Sewell said. "My brain is constantly telling me 'make this noise, make this noise, make this noise.' And I'm the one who has to react to that."
Trying to hold back a tic, he said, is like trying to dam a river. Eventually the dam breaks. Trying not to tic too much, he said, can cause his chest to tighten and his breathing to become difficult.
Different environments affect his tics, and excitement or anxiety can make the tics more active.
"If I'm focused on different things, my tics are a little bit less," he said.
SEX AND THE 'TWITCHY KID'
Diagnosed in the third grade, Sewell started giving speeches to raise awareness about TS during his junior year of high school. Soon, he began to make regular appearances in schools around Georgia. Sewell's goal in 2011 is to begin giving talks in Tennessee. In October, he spoke at UTC as part of the campus Disability Awareness Month.
"One of the most impactful things he did was a motor-tic simulation," said Leslie Harms, assistant director of UTC Office for Students With Disabilities. "He had people writing down the Pledge of Allegiance while simulating motor tics. Every third word we wrote, we had to erase and rewrite it. Then when he gave a verbal command, we had to tap the edge of the desk."
The activity, Harms said, helped her to understand the many brain signals Sewell has coming at him on a daily basis.
During presentations, students ask questions ranging from how TS affects his social interactions to how it influences his self-esteem. One of his most amusing questions, he said, always comes from ninth graders. "They always ask if I tic while I'm having sex."
He doesn't. "Sleep and sex," he said, "that's always the two things you never have to worry about ticcing during."
Being open about his condition has allowed Sewell to develop a strong sense of confidence and charisma. His social life, therefore, is not much different from most other college students.
"I've got plenty of dates," he said. "I'll meet someone and of course one of the first conversations is always going to be Tourette Syndrome, because it's there. After that I'm not 'that guy I met with Tourette's,' I'm just Rhett; and we go out and things like that. And you, know, you've always got to have that twitchy kid at the party."
MEDIA MISCONCEPTION
One of the strongest misconceptions about Tourette Syndrome is that coprolalia - the involuntary use of obscene and/or socially inappropriate words or phrases - is a typical symptom. In fact, only about 10 percent of people with TS have coprolalia or copropraxia, which means making obscene gestures.
"It's a very, very rare symptom," said Coletti-Flynn, "but that's what the media likes to portray, because they think it's funny."
The TSA issued a press release following a 2007 episode of the television cartoon series "South Park," which featured a character with strongly copralalic TS. Despite concerns, however, the group conceded that the portrayal was not entirely misleading.
Sewell said he wants to dispel misconceptions, but he doesn't condemn the media portrayal of TS.
"Even me, with Tourette's Syndrome, I laughed at (the "South Park" episode), but those are just tools for humor devices."
He likes to incorporate humor into his presentations, he said. When the inevitable question of what his condition prevents him from being able to do, he responds, tongue-in-cheek: "Well, I'll never be able to be a librarian and I'll always lose at the quiet game. So I'm heartbroken about that."
COMING TO TERMS
It wasn't always easy to laugh about Tourette Syndrome.
"Middle school is bad for anybody," he said, "but when you throw the Tourette Syndrome in the mix, it makes it a whole new adventure."
Because the exact cause and genetic structure of TS is not yet known, said Coletti-Flynn, there is no medication specifically for the illness. Some patients are given pills designed for other conditions, however the negatives often outweigh the positives.
When he was prescribed blood-pressure medication and anti-depressants, Sewell rapidly gained weight and became anxious and jittery.
"I went through middle school being the fat, awkward, twitchy kid," he said. "I shut down."
Eventually he told his parents he had to go off the meds because they were doing more harm than the Tourette Syndrome.
"Going into high school, I looked back at what had happened and I realized I had wasted my middle school career sitting at the bottom of the wall at my own pity party," he said.
So he started learning as much as he could and eventually began public speaking. He rebuilt friendships, became involved in National Honor Society, and found a new love: acting.
"AN AVERAGE 20-YEAR-OLD KID"
Acting gives Sewell respite from Tourette Syndrome.
When he's on stage, he said, the symptoms lessen because he's able to be the character. "It's really easy for me to push those tics back, but as soon as the curtain drops, it's right back up again."
He hopes to pursue acting professionally, but the English major is also considering teaching.
Having TS can present challenges in an academic environment, though Sewell, who has a moderate case, said his college experience is not much different from his peers. He is eligible to register with the Office for Students with Disabilities for extended test time and separate testing locations, but he chooses not to, "mainly because I'm stubborn."
"For me taking tests actually really helps because I'm so focused," he said. "My tics kind of go out the window for a little while."
There are good days and bad days.
"There are certain times you wouldn't know I had Tourette, usually if I have a lot of things going on. Other days, it's everything I can do to keep my head above water."
Sometimes he has to leave a class or social event so he can collect himself and get the tics under control. It's frustrating, especially for a college student, when a bad tic day interrupts his life.
"I've got stuff I've got to go do," he said. "I've got people to hang out with. I have things to study for. I have assignments. I've got to go talk to girls."
Having Tourette Syndrome, Sewell said, has shaped who he is: a self-described average 20-year-old kid.
"And to a ridiculous degree I'm a nerd," he added. "I'm a 20-year-old guy with a box of Legos in his college dorm room."
CAMP TWITCH AND SHOUT
Each summer, Sewell spends a week as a counselor at a camp for children with Tourette Syndrome: Camp Twitch and Shout.
"I love the name," he said, laughing. "It's great."
Twitch and Shout is operated by the Tourette Information Center & Support (T.I.C.S.) of Georgia, a research and support non-profit based in Smyrna, Ga. The camp is in Winder, Ga.
The severity of the condition varies among the campers, all of whom have Tourette Syndrome, and the counselors, only some of whom do. Such an environment, Sewell said, can actually aggravate his condition. "When you see someone with Tourette Syndrome, it makes you hyper aware of your own Tourette Syndrome, so our tics got a lot worse. I was ticcing like crazy trying to help these campers out, they were ticcing like crazy."
Though the goal is to give young people a sense of belonging and confidence, Twitch and Shout is a camp, he emphasized, not a group therapy session.
"It's everything you would think a camp would do, we just pay a little more attention because the kids have Tourette," he said. And what might start out as being more noticeably a camp for kids with TS, "by the end of the week, it's just kids at camp. It's like 'You're twitchy, I'm twitchy, let's go do canoes.' "
Tourette Syndrome Fact Box
* Gilles de la Tourette Syndrome is a neurological disorder, named for Georges Gilles de la Tourette, the physician who first identified the condition.
* The exact cause is not known.
* TS becomes evident in childhood or adolescence.
* Coprolalia (use of obscene language), echolalia (repeating the words and movements of others), and palilalia (repeating ones own words and movements) are rare symptoms of TS, manifesting in only about 10 percent of patients.
* Tourette Syndrome occurs in all ethnic groups.
* Males are affected 3-4 times more than females.
* There is no medication specifically designed for TS patients.
Source: The National Tourette Syndrome Association.