The schoolyard bullies always seemed to have it out for Trisha. She was just different. She made sounds she couldn’t control. She’d twitch even when she didn’t want to. Trisha had Tourette syndrome — the neurodevelopmental disorder characterized by involuntary, often repetitive movements and vocalizations called tics.
One day, though, something amazing happened. Trisha realized that her tics — those sounds, the twitches — gave her special abilities that other kids didn’t have. The things that the bullies thought were weird about her were actually powers! Trisha made a decision: to use her powers to stand up for others who were different, too. She became a superhero. She became…
“The thing I like most about Twitcha is that she took something really challenging and used it to help others and make her stronger,” said Sarah Baldwin, 19, of Mantua, N.J. “What most people would consider a weakness became her superpower.”
Twitcha is a fictional character created by Sarah and two friends — Mary Gregorian of Smithtown, N.Y. and Julie Nemerson of Northbrook, Ill. — who all have Tourette syndrome. The teens met in the summer of 2017 at the Tim Howard Leadership Academy, a program run by the New Jersey Center for Tourette Syndrome (NJCTS) that aims to develop self-leadership, advocacy skills, and resilience in attendees.
Tasked with coming up with a group project, the young women decided to create a comic book whose hero faced a lot of the same challenges they did. Not only would their superhero refuse to be limited by those differences, she would actually turn them into strengths.
“We modeled her after what we wished we would have had when we were younger,” Sarah said. “Instead of letting TS hold her back, she saw it as an opportunity to do some good in the world.”
And Twitcha was born.
The folks with NJCTS were taken by their creation and wanted to get it out to a wider audience. Baldwin was tapped to polish up the comic book, with help from Ryan Brady, creator of the online comic series The Bolt and Anomaly, and Cristina Villegas, a mixed-media artist. Twitcha is now sold on the NJCTS website, and a digital version is available on Amazon; the NJCTS also offers free paper copies for use in classrooms and libraries. The Somerville-based organization also wants to develop lesson plans that can used for public education and Tourette syndromes awareness, built around Twitcha.
“It’s truly a labor of love by someone who understands the pain of stigma and isolation that many of our young people face,” said Faith Rice, executive director of NJCTS.
Sarah, now a student at Syracuse University, is no stranger to advocacy for people with Tourette syndrome. Nor are her siblings, who also have the disorder: Anna, 20, a student at Stockton University, and Eric, 16, who attends Clearview Regional High School. All three have been activists for understanding about their disorder. They have participated in NJCTS’s youth advocate program, spoken at schools and assemblies, and helped doctors and medical students learn about the condition.
“Some families are not able to do that, but, really, it’s the best medicine,” said Rice. “You can stand up and talk about something and make a difference.”
Still, said Sarah, “It can be terrifying to get up in front of a bunch of people, especially your peers, and tell them, ‘Hi. I’m different. This is something that makes me weird in your eyes.'”
But the alternative, as she and her siblings have found, is worse: being judged, probably getting stared at, and most definitely being misunderstood.
So the Baldwins decided early on that openness was the way to go. They can’t make the elephant in the room disappear, but candor goes a long way to taming it.
Not that it always works. Sarah recalls the boy who once told kids they both knew that Sarah was faking her tics, even faking having Tourette syndrome altogether, just to get attention. Another time, some girls were online, talking the same kind of trash about her.
“They don’t understand how it feels to do these things and not be able to control them,” said Sarah. “They assume I’m doing it for attention, because I do get attention from it. It’s in your face. And I talk about it a lot because I’m an advocate.”
More often than not, though, Sarah hasn’t actually had to take on bullies, like that one guy who said she was faking it.
“I never confronted him because I heard enough people confront him for me. A lot of my friends said, ‘She’s really not faking it,’ “ Sarah said. “He got the picture that what he did wasn’t cool.”
Sarah at least doesn’t have to deal with the extremes of coprolalia, as her sister does. In that stereotypical form of Tourette syndrome, the person erupts into bouts of cursing and profanities. Still, tics like Sarah experiences are unpredictable, lawless — they follow no rules. So if you’re a student like she is, and one of your tics is a whistle that kind of sounds like a phone, you might find yourself getting into trouble with teachers who think you’re disrupting their class with your device, not with an involuntary disorder. Having a friend — and a sense of humor — can help.
“Any time I would whistle in class and get yelled at, my one friend would laugh so hard because she thought it was funny,” Sarah said. “And I would laugh, too, because it was funny.”
Nowadays, Sarah has lots of friends, some with TS, many not. Like lots of people her age, she’s still deciding her college major and what do with her life. She’s proud of her activism but she is also proud of people, like the singer Billie Eilish, who are respected for their talents and just happen to also have Tourette’s.
“I always tell people I am not Tourette syndrome,” Sarah said. “I am not defined by having it. Tourette’s is a part of me, but it’s not all I am.”
That’s why she likes Twitcha so much.
“I think the message in Twitcha applies to everyone,” she said. “We all have struggles, and with those struggles come a choice: Do we let them hold us back or do we let them make us stronger?”
You can probably guess Twitcha’s choice. It’s the same as Sarah’s.
For information about getting copies of Twitcha or online access, visit: https://njcts.org/programs/education-outreach-program/twitcha or call the New Jersey Center for Tourette Syndrome at 908-575-7350.