I had an appointment this morning with a doctor who doesn’t specialise in Tourettes. At the end of the consultation he said, “I think that’s all the questions I have, except the nosey ones. I haven’t seen much Tourettes”. He went on to ask me several questions and also suggested I apply for Disability Living Allowance, which I’d thought I wouldn’t be entitled to because I work. He said that wouldn’t be a problem so I’ll look into it further.
Genuine questions are cool whoever asks them, and on the whole I’m happy to answer. In fact I’m prone to asking nosey questions myself:
“Toblerone or dogs? Choose.”
“What are you doing with your life?”
“Who knows what fish do with their time off?”
I thought now might be a good time to get some FAQ’s out of the way, so for the rest of this entry I’m going to cover the questions asked by a thirty-strong under 11’s football team on the top deck of a bus travelling through Brixton:
Why can’t you stop doing that?
I explained to the boys that my brain was making my body move and make noises without my choosing, a bit like blinking or sneezing. This was generally accepted, except by a small boy sitting opposite me. He told me he hadn’t sneezed for years.
How do you sleep?
With difficulty, although on the whole I don’t tic when I’m asleep. However, on the occasions when I do wake up shouting, jerking or throwing myself against a wall, it can be quite unsettling.
Can you eat?
What would happen if we tied your hands up?
I’d be annoyed. I do sometimes sit on my hands or lie with them tucked under my body or head at night. There are some occasions when people I know well hold my hands still. Personally, I find it a big relief when someone I trust takes over for a while. A less welcome intervention occurred once when a stranger at a bus stop grabbed my arms and shouted at me to stop.
Why do you say those words?
I don’t have a clue. They’re mostly random and not related to specific events or thoughts. Sometimes however, they’re contextually appropriate, and respond to something I’ve seen or heard. Although I sometimes swear, my swearing is only a small part of the things I say. Most people with Tourettes don’t swear.
Do some people laugh at you?
Yes. Sometimes people laugh at me, sometimes they laugh because I say something funny, and sometimes I laugh at myself. There’s a big difference between laughing at things that are genuinely funny and laughing at somebody because they’re moving in a different way or making unusual noises.
Could it happen to me?
Several boys asked this in slightly different ways. Although it isn’t really known what triggers Tourettes, it affects people from all social and ethnic groups and has been reported the world over. It normally becomes apparent when people are about seven years old, but it can start much later.
At this point, with most of the top deck involved in our impromptu Q&A, another passenger helpfully pointed out to the boys that there was still time for it to happen to them.
Do you ever say stuff on purpose and pretend you didn’t mean to?
No. I’ve never claimed something was a tic when it wasn’t. Tics tend to sound different to my normal speaking voice. Sometimes I have to make it clear to people that I’ve actually chosen to say something and expect a response.
The only other frequently asked question not covered by the football team is one I don’t usually answer until at least the third date.