Tourette’s Syndrome is a rare medical phenomenon. Although the cause of TS is unknown, it is believed to be the result of abnormalities in neurotransmitter functions in the brain. It often causes people to say or do things repeatedly and with little meaning, usually shouting certain words that have no particular meaning to whatever is happening at the time. Sometimes the words can be explicit, making it difficult for many people with Tourette’s Syndrome to go to school, work, or have successful relationships. Because it is poorly understood by the community, many people may mistake the expletives as a verbal attack or a challenge to fight, so the issue is sometimes one of safety. The individual with Tourette’s is unable to control these impulses, although years of therapy and medications may help.
When Jess Thom walks out of her door in South London, she’s never quite certain how others may react to her. That alone is unsettling, but the young woman deals with many very inconvenient things, from involuntary movements in her legs that cause her to walk ‘chaotically’ to vocal tics that cause her to constantly say random words. Youth worker Jess Thom hopes to teach others about Tourette’s Syndrome. That is her primary goal.
“It’s a fantastically strange condition. Lots of things about Tourette’s are quite surreal. Some experiences I’ve had are very unusual.”
So what is the word that she compulsively says 900 times an hour due to this condition? Biscuit.
Then there are the surreal phrases: “Stuff my mouth with pencils,” “Disco penguins dancing in your dreams,” “William Hague, Banjo Man” and “Give me a massage with Marmite.” These may come and go, but another surreal phrase is sure to take its place.
“I punch my chest hundreds of times a day and use a wheelchair as the tics make my walking very chaotic. I say random words like biscuit, cat and hedgehog but it is a complete mystery as to why. When people think of Tourette’s they think about swearing but that only affects 10% of people with it. I am one of them though.”
Jess receives disability living allowance and uses a wheelchair, as she drops to the floor so often that it’s not always safe to walk. She uses muscle relaxants to help her sleep, while the calming pressure of a weighted blanket also helps. Sometimes during particularly severe episodes, she takes diazepam to help her sleep. She also uses humor, but is quick to point out that laughing at someone is not the same as laughing with them.
“Humor is a great way of encouraging people to think differently about something. It’s really powerful to share a joke with someone. There’s a big difference if you’re laughing at someone or with them. I know the difference. It’s important not to be scared of humor.”
In an attempt to put a more positive slant on TS, and to educate the public, Jessica has also set up Touretteshero, an organization and online resource for people with and without Tourette’s.
“It’s all about breaking down negative attitudes and increasing understanding,” Jessica said.
“While it can be difficult, having Tourette’s has made me a more resilient, confident and articulate person.”
[photo via exehuntmagazine.com]