Jess Thom has Tourette’s, so it might surprise you to hear that during the course of our interview, not one profanity was uttered. But it shouldn’t.
“It’s one of the most frequently misunderstood conditions,” says the Londoner of the neurological disorder she shares with more than 300,000 children and adults in the UK – only ten per cent of whom will involuntarily curse. “I think there’s a lot of focus on vocal tics and that lots of people probably don’t think about the impact of motor tics.”
Jess, for example, punches her chest hundreds of times a day, and uses a wheelchair to remedy the tics that muddle her walking.
“The other big misconception is that Tourette’s is caused by anxiety,” she continues. “Certainly any heightened emotion, nervousness, frustration, happiness or excitement can intensify my tics, but I’m not a nervous person.”
Her career as a comedian makes this clear, inspired by her once being ushered out of the audience and into the sound booth during a stage show, ironically, about segregation.
“It was such a humiliating and upsetting experience that I promised myself I’d never set foot in a theatre again,” says Jess. But it wasn’t a promise she kept. “I decided to find the only seat in the house I wouldn’t be asked to leave. On the stage.”
In 2010, Jess co-founded Touretteshero, a space spearheaded by a superhero celebrating the humour and creativity of Tourette’s. She’s since hit the boards at Glastonbury and the Edinburgh Fringe Festival, published Welcome to Biscuit Land (a book bearing a forward by legendary funny man Stephen Fry, who dubs Jess “delightful”) and is currently touring her award-winning show Backstage in Biscuit Land around the globe.
Co-written with puppeteer and fellow performer Jess Mabel-Jones, the show takes its name from Jess’s most prominent vocal tic – biscuit – a word she can repeat up to 16,000 times a day.
“Anything that I’ve ever seen or heard of experienced has the potential to become a tic, but why certain words stick around is a mystery,” she explains. “Before biscuit, there were other longstanding regulars including squirrel, and Taser, and Happy Christmas. I am one of the ten per cent of people who also has some rude tics, but even then they make up a small percentage of things I say involuntarily.”
Our conversation is peppered with biscuits, hedgehogs and cats, as was her 2013 TED talk, The Alchemy of Chaos, where Jess announced to an audience of thousands at London’s Royal Albert Hall, “Aladdin’s dead!” (Before swiftly reassuring Disney devotees, “No he’s not”).
“Lots of people think it’s just saying what’s on your mind, or saying what you’re thinking, and while tics can relate to the environment, I think that’s far too simplistic,” says Jess. “My thoughts are tic free and my tics aren’t what I’m thinking, and don’t always reflect my opinions or ideas. And it can be upsetting or worrying if people take them that way.”
Now 35, Jess has experienced spontaneous verbal and motor tics since she was six years old. “I remember a very challenging time at the start of high school when I’d run uncontrollably into closed doors,” she says. “I knew that I moved differently and made unusual noises, and that was something that worried me.”
Jess wasn’t formally diagnosed with the condition until age 25. “[The diagnosis] made the language around my tics so much easier, because I had ways of explaining them. It made other people much more comfortable because they could learn about it and have a clear explanation. And crucially, it meant that I could get the right support.”
Now with a name to her condition, the graduate of London’s Royal College of Art noticed a number of online videos featuring people pretending to have Tourette’s. One in particular had clocked over 30 million hits.
“I remember seeing this and thinking, wow, everybody who watches this video is being short-changed. The reality of life with Tourette’s is much funnier than this.”
A conversation with friend and future Touretteshero co-founder, Matthew Pountney, really got things cooking.
“He described my tics as ‘a crazy language-generating machine’ and told me not doing something creative with them would be wasteful. There was something about that sentence that just switched how I thought. I saw for the first time that my tics might have creative value, and be of interest, and talking about them might be viable.”
Backstage in Biscuit Land shares the journey of Jess’s life with Tourette’s. “You can expect songs, spontaneity, puppetry… and biscuits,” she grins, but living with her condition is not all fun and games. Jess suffers seizure-like episodes of intense tics several times a day, where she completely loses control of her body. “When that first started happening on a regular basis, I felt like it would be impossible for me to keep working or keep leaving my house or keep doing the things that I enjoy,” she says. “But I find that practical solutions and creating a plan, talking to people and getting support means that, actually, there’s very little in the way of tics that can’t be overcome with a bit of creative thinking.”
And while she’s hopeless at keeping a secret, and has been known to shout out “bomb” at the airport, being neurologically incapable of staying on script, both on stage and in life, has its perks.
“My tics often draw my attention to details in the world around me that I would otherwise perhaps not notice,” says Jess, adding that she never has to worry about awkward silences. “I read an online survey that showed that people in the UK only spent an average of six minutes a day laughing, and thanks to Tourette’s, my friends and I have a much higher average than that.
“Laughter is a really powerful tool for bringing people together, and shared laughter can help people unlock new ways of thinking. I wanted to use that to improve understanding, to encourage people to think about something that they might not have thought about. To think not just about Tourette’s differently, but about disability differently,” she says, bringing home her mission to create a more inclusive world. “Because difference is absolutely brilliant.”