First of all, Happy New Year!
However you marked the arrival of 2016, I hope your celebration was happy and enjoyable. Mine certainly was. I spent the evening at a pub where Will’s band Brasstermind were performing. Sophie, Eoin and Rachel were all there too, as well as lots of other people I know.
The evening had a loose Moulin Rouge theme, something I didn’t find out until yesterday. Fortunately I’m a fan of sequins so I had sparkly leggings and a top ready to go. What I hadn’t realised was that the changes in my sensitivity to touch that have happened over the last few months would make this outfit almost unbearably uncomfortable. Thankfully it was only a problem if the sequins touched my skin so I did my best to avoid this.
Brasstermind were absolutely brilliant and sandwiched an excellent countdown to the New Year in between cracking tunes. I was very glad to be kicking off the year dancing with amazing friends.
At the start of any new year I often pay attention to the first time I do ordinary things – first phone call of the year, the first wee, or the first ‘biscuit’. One ‘first’ I didn’t welcome was my first ‘ticcing fit’ – which came just after 2:00am.
I was dancing, moving energetically but erratically, as is my style, but suddenly I became aware of my body seizing up. Will, Sophie and Eoin quickly manoeuvered me off the dance floor and to a quieter area where I could get out of my wheelchair and onto a sofa.
Going from feeling carefree and happy one moment to being in a great deal of pain the next is a surreal experience. Weirdly I sometimes feel quite guilty on these occasions, guilty that other people, whether strangers, or more likely friends, are having to manage the pain I’m in.
I know this is silly. There’s obviously nothing I can do about it and nobody’s ever mentioned anything that would make me think it’s an issue. I don’t worry about this at work, or at home, or when I’m out and about. But when I have intense fits at social gatherings these feelings creep in pretty quickly. I’ve never mentioned this to any of my friends, or even acknowledged it to myself before now. The fact that I’m writing about it at all has taken me a bit by surprise.
In the early hours of this morning these feelings were compounded by the fact that I hadn’t seen that much of Will or Eoin recently and I was annoyed that our time together was being wasted.
My first fit of the year lasted 30 minutes. When I could speak again I joked that I’d been hoping to give fits up in 2016. Will pointed out that, as it technically wasn’t New Year in the US yet, if we worked to Eastern Standard Time I could still be in with a chance.
In that joke lies the nub of the issue. It would be amazing if I could give up having ticcing fits, but this first one of the year and all those that happen when I’m out enjoying myself are stark reminders that this challenging aspect of my life with Tourettes continues.
I was brilliantly supported by Will, Sophie and Eoin and it wasn’t long before we were all back on the dance floor. And because I’d got my fit out of the way I was a little more daring about where I was dancing because I wasn’t likely to have another for a good while. I found a wide window-ledge to sit on with seating underneath that I could rest my legs on. This meant I could dance more freely and have a view that consisted of more than just other people’s backs.
Although I’ve just spent a significant amount of time describing my feelings about my unpredictable body, it really was a lovely night, with great music, great dancing and great friends.