The woman who says ‘biscuit’ 900 times an hour: Listen to the Tourette’s sufferer who breaks the taboo with humour
08:33 GMT, 20 April 2012
/04/20/article-0-12AD2F02000005DC-136_634x654.jpg” width=”634″ height=”654″ alt=”Changing perceptions about Tourette's: Jess Thom wants to raise awareness about the condition, and raise a few laughs too” class=”blkBorder” />
Changing perceptions about Tourette's: Jess Thom wants to raise awareness about the condition, and raise a few laughs too
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’.
Where all these strange, almost magical, lines come from, Jess, who’s 31, cannot say.
‘It’s a complete mystery,’ she says. ‘If I spent too long dwelling on it or paid too much attention to it, I’d never get anything done.
‘Often, they really surprise me. Some people think Tourette’s is saying what you are really thinking, but that doesn’t ring true for me, it’s far too simplistic.
‘The vocal tics aren’t nonsense, but neither are they thoughts. Different ideas collide together and shoot out – which can be challenging.’
Tourette’s is an inherited neurological condition which affects one in every 300,000 people in the UK and begins in childhood
Its key feature is tics – involuntary and uncontrollable sounds and movements.
For many, the condition can be a nightmare, often causing fear and laughter by strangers.
But for Jess, who was born and raised in South London, there is a ‘fabulous strangeness’ to the syndrome. Determined to change negative perceptions, she is keen to highlight the humour which can be found – not in the condition itself, but in the random, often magical phrases conjured up by her subconscious.
‘Instead of fighting Tourette’s, I celebrate it,’ she says. Yesterday morning, millions of Radio 4 listeners heard her unique voice in a remarkable interview with James Naughtie on the Today programme, which she hopes will help change perceptions about the syndrome.
‘I think it’s really important that people hear what tics sound like,’ she says.
‘People have an idea of Tourette’s,
but it’s good that they can hear that I have clearly articulate thoughts
and they are just interrupted by automatic words or noises.’
‘The vocal tics aren’t nonsense, but
neither are they thoughts. Different ideas collide together and shoot
out – which can be challenging.’
The programme was pre-recorded so that Jess’s uncontrollable use of the ‘f-word’ could be edited – ten per cent of those with the condition have coprolalia; the uncontrollable use of foul language. Jess understands why it was cut, but sees it as very much part of her condition.
‘There’s no emotion or anger. It’s just a noise.
‘It doesn’t sound the same as if I was really swearing. You can tell the difference between a tic word and a spoken word, what’s voluntary and what’s not. There’s lots of stuff online about Tourette’s,’ she says, ‘and much of it concentrates on the swearing, but it misses how funny lots of other things about Tourette’s are.’
Two years ago, encouraged by a friend who described her tics as a ‘crazy language-generating machine’, Jess co-founded the not-for-profit organisation Touretteshero, which aims to celebrate the creativity and humour of the condition and aims ‘to change the world, one tic at a time’.
‘I’d always seen my tics as a problem, but my friend helped me see the creative potential of them. It seemed wasteful not to do something with them.’
Aside from dressing up in a shiny blue and white superhero costume and visiting children and young people with Tourette’s, Jess also writes a daily blog about her experiences on her website — touretteshero.com – and tweets a ‘daily outburst’.
Recent favourites include ‘Help, I’m stuck down a well’ and ‘I’m made out of cheese’.
Struggle: Sudden body movements mean Jess's walking is, in her own words, 'chaotic'
Jess has also invited artists to illustrate some of her more colourful phrases. The result is an eclectic gallery of images that leave visitors to her website rocking with laughter. Later this year, she is planning to publish a book: Welcome To Biscuit Land – A Year In The Life Of Tourette’s Hero.
‘We’re trying to engage people in a humorous way, and share and enjoy the surreal things that are said. The website isn’t just for people with Tourette’s,’ she says. ‘It’s claiming back the laughter that commonly goes with the condition. Tourette’s can be funny, but it’s laughing together about the funny tics that come out and not at someone because they’re doing something in a different way.’
Jess’s own Tourette’s began to emerge when she was just six years old and began to make involuntary sounds and movements – although she wasn’t diagnosed until she was 25.
‘When I was younger, it was much less noticeable to other people,’ she says. ‘The first tic I can remember was a squeaking. My parents just accepted me for who I was, but I always knew that my behaviour was odd. They were reluctant for a formal diagnosis, because they were worried about holding me back or the misconceptions associated with Tourette’s.’
But although her condition slowly intensified, Jess attended a mainstream school – and did her best to conceal the strongest of her impulses.
‘Just like you can hold in a blink or a sneeze, some tics you can suppress, and when I was younger I did have a greater level of suppression than I do now.
‘It could be very uncomfortable, but I could hold tics up and let them out later when I was on my own, or sit on my legs so I got pins and needles and stop them moving.
Celebrate: Jess co-founded Tourette's Hero to celebrate the creativity and humour of the condition
‘I remember during a PE lesson compulsively throwing a basketball at a teacher and being sent out of the lesson, but they were very understanding when I explained I hadn’t been able to stop myself.’
She left school at 18 with A-levels in Art, English and History and then studied at Camberwell Art College. ‘In my early 20s, the tics began to get worse, and I was diagnosed a few years later.
‘It was very important to have a clear explanation of something that had always been part of my life. It’s meant I’ve been able to get the right help and support.’
Today, Jess shares a flat with a friend and is a project co-ordinator for a children’s centre in London’s Stockwell, thanks to a Government scheme called Access to Work. She is assisted by social workers who help to make her life as independent as possible.
‘The vocal tics have the least impact on my life by far,’ she explains. ‘My motor tics – involuntary movements – have a much bigger impact on my independence.’
Sudden leg movements mean she can fall to the ground without warning. Her walking is, she says, ‘chaotic’.
She wears padded gloves because she hits herself on the chest hundreds of times each day.
She finds it hard to write – and to drink she needs a cup with a lid on it. She sleeps beneath a weighted blanket, because her motor tics make it hard for her to be still enough to sleep.
But changing her own attitude has been just as important as her mission to change others. ‘I used to be afraid and embarrassed by my tics, but now it’s about looking for the creative opportunities that Tourette’s gives.’
Before she launched Touretteshero in 2010, she believed that the road ahead would be a long one.
‘I used to think that attitude change was a long slow process,’ she says, ‘but, actually, I’ve learnt that it’s often really quick.
‘It can happen on buses, in one conversation or through Twitter. People’s attitudes can shift really quickly.’
Certainly, appearing on Radio 4’s flagship news show yesterday will have furthered her cause inestimably – as did featuring in a programme about language made by Stephen Fry last year.
‘There’s not a lot I can do about having Tourette’s,’ she says. ‘But I can change people’s perceptions.’
Radio 4 Interview with James Naughtie 19th April 2012 by Touretteshero