This morning I woke up early, for the second day in a row. Yesterday I had to get up and head off to catch a train while it was still dark. This morning I stayed in bed watching the sunrise, thinking about all the funny and interesting that had happened in the meantime.
Leftwing Idiot, Poppy and I had been to a conference in Birmingham for adults with Tourettes, or parents and carers of children with the condition.
There’s no getting around the fact that conferences for people with Tourettes are a surreal affair! Outwardly yesterday’s would have looked like any other: a large room in a conference centre, tables for delegates, earnest speakers, PowerPoint presentations, information packs, refreshment breaks and a buffet full of finger food. But unlike most other conferences, this one also had tics.
At a guess, approximately one third of the audience had Tourettes. This meant whoever was speaking was never the only person speaking. For me, one of the strangest and funniest moments was when an eminent Italian Tourettes specialist took the floor. He gave his talk faultlessly. You’d never have guessed from his performance that Ruth was listing Italian foods in a mock Italian accent, at full volume, from start to finish: “Tagliatelle, spaghetti, pizza…Parmesan.”
I wasn’t at the conference just to listen. I was also there to speak about Touretteshero and the work I’ve been doing raising awareness of Tourettes in the media. I was very pleased to have this opportunity and to be part of a programme that included both speakers with Tourettes and medical experts.
A major attraction of events like these for me is being in an environment where I’m not the only one making unusual interjections. It was interesting to hear the experts talking about Tourettes research and treatments, but it was also fascinating to hear other people’s tics and learn about their experiences.
Tics would often ping-pong around the room. One of my regular tics involves telling Leftwing Idiot to shut up. I did this during one of the presentations, then Ruth did it, and then the whole room said “Leftwing Idiot, shut up!” It was like a slightly out-of-synch chorus.
For Leftwing Idiot and Poppy it wasn’t just a case of seeing and hearing tics. For them it escalated into feeling them as well. They were sitting with Ruth and me either side of them. At one point Ruth’s arm swung in Poppy’s direction, narrowly missing her. My tics responded immediately, saying “And together…” My arm immediately flew at Leftwing Idiot, while Ruth’s went for Poppy. We made contact with their heads simultaneously, knocking their glasses off at exactly the same time. They took this with very good humour despite Poppy being left with a bruised nose.
Feeling part of a community of people who have Tourettes is important in helping me maintain my resilience and optimism. I felt cheerful as I lay in bed this morning remembering everything that had happened.
“Tattoo a basil plant so it looks like a Christmas tree.”