“I have Tourette Syndrome”

Eliza Cussen Thursday 19 January 2012 10:49am

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Eliza Cussen. Photo credit: James Fehon.

So I have Tourette syndrome. Which is fun. Like lots of fun pastimes it involves dancing, loud noises and surprising people in public.

All it is my muscles, usually my arms or shoulders, spontaneously moving followed by pins and needles running through my nervous system. Sometimes I make noises but you would too if your muscles moved themselves around. It doesn’t make me swear or say inappropriately sexual phrases. I can do that all on my own.

What makes my own pet neurological disorder special is that, more often than not my tics resemble dance moves. I’ve been known to shimmy, twist and clap my hands like a flamenco dancer. Lately I’ve been doing a series of jazzy, sultry clicks with my right hand. I’ve also kicked lovers and smacked my head violently on bus windows. It took a while for a hand shaped bruise on my arm to fade because I kept refreshing it.

I’ve been getting several tics a day since I was about nine. Some things that appear to trigger them are:

• Fatigue
• Stress
• Boredom
• Being slightly chilly
• Sickness
• Being over caffeinated
• Being under caffeinated
• PMS
• Needing to pee
• A random weather event happening in a nearby city (or something like that)

So being in an overly air conditioned late night session of a tedious movie where I’ve drunk one of those giant cokes after I’ve had a fight with my mother while I have the flu is basically my idea of hell. If you manage to engage me in interesting conversation on a warm day when I’m feeling chipper you’ll probably never notice.

There’s nothing I can do to stop a tic from happening. I feel one coming as a kind of pressure building up in my limbs. Then the tic happens and there’s a feeling of relief. Over the years I’ve learnt to redirect the movement. For instance, if I have hot coffee in my left hand I’ll be able to force the tic down my right arm to avoid disaster. For all I know my jazzy clicks could be an alternative to me shouting “I prefer to Cherry Ripes to hairy scrotum” at my boss.

As neurological disorders go it really isn’t so bad. It’s actually quite surprising how little impact it’s had on my life. I manage to get quite a bit done between dance moves. Tourette syndrome is incredibly varied in its symptoms and severity, ranging from imperceptible to almost debilitating. This could explain why I only got a formal diagnosis* at 23, long after the point they’d told me I’d grow out of my strange little habit.

The only thing it’s really ever stopped me doing is driving. I’m told that it takes quite a bit of concentration so I expect I’d be fine, I just haven’t quite worked up the courage yet. I guess I learnt early on that I got to decide how much it would affect me. I opted for “very little” so I developed a sense of humour about it.

When I was 16, during a particularly dance-a-riffic stage, I was in history class. I hadn’t yet learnt how to redirect my tics so I kept making this little “OOOP!” noise and moving my hands around. An angry looking chick turned around and said “What, do you have Tourette’s or something?!”

“Yes,” I said, with a deadpan expression. The angry chick, who is now one of my best friends, looked mortified, folded herself in half and sunk into her chair. I don’t think she ever quite recovered. That was a turning point from which I decided that the problem wasn’t with me, it was with society’s lack of accommodation for spontaneous dance.

So in summary, if I swear at you or approach you with out of context sexual innuendo, chances are I mean it.

*Can I get some kind of certificate for that? I’m not asking for much, just like a merit award or something. I’d also like a badge.

There are a number of groups that support people with Tourette syndrome. Try the Tourette Syndrome Association of Australia.

Eliza Cussen is a Sydney-based writer and non-profit communications specialist.  Her blog, Fix It, Dear Henry, is about boys, feminism and the topics less travelled. She tweets here.