Comedian Jess Thom learns the best way to explain her Tourette's to someone new.
Jess Thom is co-founder of Touretteshero and may or may not lead a secret double life as a superhero. Artist, playworker, and expert fundraiser, Jess currently helps coordinate a large play project in South London. Jess has had tics since she was a child but wasn’t diagnosed with Tourettes until she was in her twenties. With some encouragement from her friends, Jess decided to turn her tics into a source of imaginative creativity and the Touretteshero project was born.
This story originally aired on Jan. 13, 2017.
Story Transcript
Nice job, <Biscuit!> thanks <Hedgehog!> <Biscuit!> <Biscuit!>. This is an adventure. I’m not going to stage dive. I mean, I can’t promise that. Front row, I’m sure you’ve got me. <Biscuit!> <Hedgehog!> <Cats!>. Hello, <Biscuit!> I’m Jess, <Biscuit!> I’m an artist, <Biscuit!> a writer, and a part-time super hero. <Biscuit!> <Hedgehog!> <Cats!> <Biscuit!> I also have Tourette’s syndrome <Biscuit!>, which is a neurological conduction, <Biscuit!> that means I make noises and movements I can’t control <Biscuit!> called tics <Beans!>. They’re not called beans. <Salad!> Or salad. <Biscuit!> <Hedgehog!> <Biscuit!>
I’m going to describe myself briefly for anyone who might find this useful. I’m a nineteen-year-old antelope. Okay, I’m going to try and describe myself <Biscuit!>. I’m a thirty-something white woman <Biscuit!> of average build with curly brown hair and a very cool wheelchair. <Biscuit!> <Cats!>
There’s three things you need to know straightaway <Biscuit!> <Cats!>. Firstly, you’re going to hear the words “biscuit” and “hedgehog” <Biscuit!> a lot in the next ten minutes. <Biscuit!> <Biscuit!> Secondly, if I say something funny, you’re absolutely allowed to laugh <Biscuit!>. In fact, it would be a bit odd if you don’t <Biscuit!> <Biscuit!>.
Finally, several times a day, my tics intensify <Biscuit!>. <Hello, phone, it’s your mother checking up on you> I mean, it might be. <Biscuit!> <Hedgehog!> <Biscuit!> <Cats!> <Biscuit!> Several times a day, my tics intensify and I completely lose control of my body and speech. <Biscuit!> These episodes, which I call ticing fits, look seizure-like and need similar management. <Biscuit!> <Cats!> If this happens while I’m talking, <Biscuit!> entertain yourselves with a penguin. No, you don’t have to do that. Don’t worry. <Biscuit!> <Biscuit!> I mean, you can try. My support worker will come and help me, and Liz will take over… with that penguin. <Biscuit!> <Hedgehog!> <Biscuit!>
Tourette’s is one of the most frequently misunderstood conditions on the planet. <Biscuit!> Lots of people have heard of it, but most of what they know is based on myths and stereotypes <Biscuit!> so I thought I’d get a few of those out of the way first. <Biscuit!>
Swearing <Fuck it!> -- it’s often characterized <Biscuit!> as the swearing disease. <Fuck a sheep!>. In fact, only ten percent of people with Tourette’s have obscene tics, <Fuck them!> I am one of them. <Biscuit!> <Biscuit!> But even so, I’m as likely to shout about domestic appliances, dinosaurs or B-list celebrities as I am to swear. <Biscuit!>
It isn’t a rare condition. It’s estimated to affect three hundred thousand people in the U.K. <Biscuit!>, but it’s on a spectrum so it affects each person differently. Some people’s tics are barely noticeable <Biscuit!>. Like mine <Biscuit!>. While others will behave in a way that makes them stand out. <Biscuit!> It isn’t just saying what’s on your mind. <Biscuit!> I don’t think about biscuits <Biscuit!> nearly as much as I talk about them. <Biscuit!> <Biscuit!> <Biscuit!> It’s a neurological condition, not a mental health disorder, and it’s not caused by bad parenting, nervousness <Biscuit!>, or demonic possession. <Biscuit!> So what is it? <Biscuit!>
My favorite description <Biscuit!> comes from the Oxford Handbook of Clinical Medicine, <Biscuit!> <Ta-da!> <Biscuit!> You always introduce a handbook with a “Ta-da!” <Biscuit!> <Biscuit!> It describes Tourette's as irrepressible, <Biscuit!> explosive, occasionally obscene verbal ejaculations and gestures. <Biscuit!>
It goes on. There may be a witty, innovatory, phantasmagoric picture, with mimicry, antics, and playfulness <Biscuit!>. And that’s the Tourette's I know. <Biscuit!> I’d like to play a quick game. <Biscuit!> Turn to the person next to you and say hello. <Biscuit!> Now, stare into their eyes and try not to blink for as long as possible. <Biscuit!> <Cats!> <Hedgehog!> <Biscuit!> <Cats!> <Hedgehog!> <Biscuit!> <Biscuit!>
Have we got any winners? <Biscuit!> <Hedgehog!> <Biscuit!> Have we got any winners? Round of applause for all our non-blinking champions. <Biscuit!> <Biscuit!>
I often use blinking <Biscuit!> as a way of explaining to children what tics feel like. <Biscuit!> I remember a lovely conversation with a child at work. <Biscuit!> We were sitting in the garden, near a pond. <Splash! That’s Theresa May falling in!> Okay, that didn’t happen in the real story. <Biscuit!> <Hedgehog!> <Biscuit!> <Biscuit!>
Shaded by a green canopy, <Biscuit!> patches of sunlight made their way through the leaves. <Biscuit!> The girl I was with was seven, and together we were looking into the water <Biscuit!>, discussing what might live beneath the surface. <Biscuit!> I had explained Tourette's to her before <Biscuit!>, like I have to lots of children <Biscuit!> <Biscuit!>, but she asked what tics felt like <Biscuit!> so I asked what her body did all the time without her noticing. <Biscuit!>
She couldn’t think of anything <Biscuit!> so I pointed out how she blinked. <Biscuit!> She laughed and said, <Biscuit!> “If I don’t blink, it hurts. I have to blink.” <Biscuit!> I said, “That’s a bit like how it feels for me if I don’t move or make a noise.” <Biscuit!>
She suggested we had a no-blinking competition <Biscuit!>, carefully pointing out that “Biscuits” were okay. <Biscuit!> <Biscuit!> We sat on the ground near the pond and stared at each other. <Biscuit!> London’s never felt so peaceful. <Biscuit!> She won. <Biscuit!> <Biscuit!>
Tics will feel slightly different to each person with Tourette's. <Biscuit!> Mine create a whole range of sensations <Biscuit!> <Like a bubble machine on a trampoline and it’s sat inside a porcupine’s bum!> I mean, that’s not exactly how I describe it <Biscuit!> <Biscuit!>, but my tics do often draw my attention to the world around me in a way that I’d otherwise miss. <Biscuit!> <Biscuit!>
My bed was cold when I got in it so I pulled the duvet tightly ’round me as I settled down to sleep. <Biscuit!> I hadn’t closed the blinds <Biscuit!>, but I didn’t want to leave my slowly warming bed so I lay looking at the familiar scene outside my window. <Biscuit!> <Biscuit!> It was a blustery autumnal night, <Biscuit!> the first since the seasons had changed. <Biscuit!> My tics were instantly drawn to the wave-like movements of the trees outside. <Biscuit!>
“You are waving like the sea trees. <Biscuit!> Are you a large tree or a sea anemone? <Biscuit!> Trees, the squirrels are so lucky you’ve given them whitewater rafting lessons. It’s an adventure.” <Biscuit!> <Hedgehog!> <Biscuit!>
The branches, still leafy, undulated and swelled. <Biscuit!> I drifted off to sleep watching them, shouting sporadically. <Biscuit!> Soon, they’ll lose their leaves and stop waving like the ocean <Biscuit!>, and if it wasn’t for Tourette’s, this seasonal shift would probably have passed me by. <Biscuit!> <Biscuit!> <Hedgehog!> <Biscuit!> You probably guessed it by now <Biscuit!>, but if my story has one take-home message <Biscuit!> is that you never put Theresa May in a colander, that nineteen percent of all orgasms look great in grayscale, and that trigonometry is the biggest adventure anyone can have on a Thursday. Thank you.