We spoke with Thom, who founded the website Touretteshero, about learning to embrace Tourette’s. Below, an edited transcript of her really lovely responses:
You bring so much humor and joy to living with Tourette’s syndrome. How have people reacted to your message, and to your TEDx talk in particular?
When I first started Touretteshero, I had no idea how people would respond. I was worried some people might mistake my celebration of Tourette’s for a joke, but so far, that hasn’t been a problem. There is, of course, a big difference between laughing at someone and laughing with them. Shared laughter has helped me get through some very difficult times.
While little can be done about the physical impact of tics, improving the social impact of the condition is something everybody can play a part in. The response to my TEDx talk has been amazing. Lots of people have been in touch with thoughtful questions and ideas for future collaborations.
During your talk, you said: “Even the most challenging aspects of the condition have creative potential.” That idea really stuck with me. How did you discover that creativity, and how did you learn to embrace it?
It certainly wasn’t an easy process. I spent years trying to ignore my tics, and I was desperately afraid of them being noticed and commented upon. As they began to intensify and have a bigger impact on my life, I learnt to explain them to other people. Developing this skill has improved my quality of life more than any other intervention or treatment.
A key turning point was when my friend Matthew described me as a ‘Crazy language-generating machine.’ He told me that not doing anything creative with my tics was wasteful. This comment transformed how I felt about my condition. Rather than wanting to hide my tics, I felt excited to share them.
There are currently over 5,000 of my vocal tics on Touretteshero, and they’re ready and waiting to be turned into works of art by anyone with creativity and imagination.
Do you remember a specific moment or project when creativity helped you see Tourette’s in a new light? What was that experience like for you?
One cold autumn afternoon, just as we were starting Touretteshero, I travelled across London to meet my friend Alex. Together, we recorded a very special interview. Rather than ignoring my tics, we decided to let them lead the conversation and see what strange stories would emerge.
We called this interview ‘Live Talk’, and however surreal and unusual it might be, recording it was a liberating experience. After years of battling to have coherent conversations despite my tics, giving them a free rein was extraordinary. I remember traveling home that night excited by what we’d done and wanting to do more.
How would you encourage others to embrace creativity in their own lives, no matter what conditions or circumstances they face?
Creativity has helped me transform myself from a Tourette’s ‘sufferer’ into a Tourette’s superhero. But it wasn’t that my tics suddenly became more interesting overnight or that I’m unusually strong or brave. I just learnt to see my condition in a different way.
To others I would say, be open to finding creativity in unusual places; don’t be afraid to make mistakes or to experiment with new ideas; do ask for help when you need it; and be ready to see things from other people’s perspectives. It’s not essential, but I find wearing sparkly pants and a shiny cape helps too.
Touretteshero has helped me realize that ignoring problems never works, but that laughing a lot often does. Most importantly, I’ve learnt that if something’s not working, I have the power to change it.
Below, read Thom’s tips for living a creative life:
http://blog.ted.com/2013/10/29/a-qa-with-jess-thom-of-touretteshero/
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