London is still, or at least very slow, because it’s been snowing heavily. I’m not still, but that’s normal for me. The snow’s given me an unexpected day off so I’ve decided to listen to and transcribe the recording I made of myself on New Year’s Day.
I wasn’t surprised by my vocal tics when I played them back, but I hadn’t expected to hear the sounds of my motor tics – the mic had picked up all the times I thumped my chest, which was 130 in the first hour.
I’ve no idea what, if anything, I’m going to do with this recording but I decided to see if I could get a measure of how often I tic because I find it very hard to tell whether they’re becoming more frequent or not. Tourettes changes over time and my tics are likely to keep going up and down in intensity and frequency throughout my life.
I’ve had tics since I was a child. My first memory of not being able to stop squeaking was when I was about six. My tics then were much less obvious than they are now, but I still worried about how I moved and I used to get upset when I behaved in an erratic way because I didn’t understand why it was happening. By my late teens I knew I probably had Tourettes but I didn’t feel able to talk to anyone about it.
When I left home I moved into a shared house with Laura and Emma who are still two of my closest friends. Emma’s room was next to mine and she used to complain about the noise of my bed moving about and squeaking at night. They would joke about what I was doing but I felt less embarrassed by the suggestion that I was frenziedly masturbating than by the fact that I couldn’t keep still.
The first time Leftwing Idiot mentioned my tics was not long after we’d first met. We were walking back from lunch and he asked “Why did your arm just move like that?” I replied “It does that sometimes, it has a mind of its own.” He laughed and said “What do you mean?” I brushed it off and he said I was strange.
My tics got worse throughout my early twenties and it was generally accepted by my friends that I was pretty twitchy. When Laura and I were working together for a bit, each day ended with a dull team meeting. During a particularly long one she and our mate Kyle kept a tally of how many silly faces I made. This wasn’t something I felt upset about because I knew they weren’t being unkind, and I did move about a lot. But I didn’t believe they’d counted accurately.
Most people just accepted that that was how I was, though sometimes they found it confusing. Leftwing Idiot found it really weird when, if he asked what noise dogs make, I would bark. I found it really weird that he could choose not to if he was asked the same thing. Kyle spent years trying to teach me how to whistle in tune, something I still can’t do.
Friends would worry about me in formal situations and ask, “Were you still?” Sometimes they’d get annoyed and say, “You’re not trying hard enough to stop”. I sort of agreed. Part of why it took me so long to ask for help was because I kept thinking if I just concentrated a bit harder I could make it stop. But I couldn’t and as the tics increased in complexity and force I felt increasingly frustrated by my lack of control.
I really wanted to talk to the disability coordinator at college about it. She was providing support for me in other areas and she’d definitely had noticed my unusual arm and hand movements, but I’d bottled out. I talked about it with Laura a couple of times shortly after I started throwing my head back. I told her that when we were out I’d go to the loo and move about wildly. I didn’t think this was particularly odd and tried to convince her to give it a try.
It was my mum who was the first to say out loud she thought I had Tourettes. She’d watched a documentary that was speculating about whether Mozart had the condition and thought it sounded like me. I did nothing about it, thinking that if I’d gone this long without a proper diagnosis I didn’t need one. But my tics were having an increasing impact on my life both socially and at work.
One day a friend of mine asked “How can I explain your twitching to my friends when you meet them?” This question really stuck in my mind and made me realise that it might be time to have a fuller explanation for my behaviour, both for me and for other people. I emailed Leftwing Idiot a link to the symptoms and diagnosis criteria for Tourettes and asked him to have a look. A few minutes later he phoned and said, “You have Tourettes. Now what are you going to do about it?”
Most people with Tourettes have tics from childhood, but having listened to other people’s stories I realise my experience of not being diagnosed until later doesn’t seem that uncommon. I’ve met several other people who, like me, have much more extreme tics as adults than they had when they were younger. It can go the other way too, and for lots of children with Tourettes, their tics won’t be a big challenge in adulthood.
My parents always worried about people labelling me when I was a child, but I remember Superman’s parents having the same dilemma, and I’ve never regretted seeking help to understand better something that’s a big part of my life.