Tourettes Superstars

This evening along with Fran, Claire and Poppy I went to watch my friend Ruth perform. She’s a singer and along with five other people with Tourettes she showcased her talent at tonight’s event – Tourettes Live in London.

The show is part of a documentary which is being made about Ruth and the other young musicians. TV presenter Reggie Yates hosts it and it will explore how Tourettes impacts on their lives as well as joining them on a journey to develop their performance skills. It’s due to be aired later this year.

Tonight’s show was amazing – all the performances were fantastic. Ruth sang in spite of having laryngitis. She was brilliant and it was a privilege to see her on stage.

I’d expected there to be other people with Tourettes in the audience but I was the only one with audible tics who wasn’t on stage. The venue, production team and crew were great and clearly very used to Tourettes. Reggie dealt with my tics well and put me at ease by acknowledging them at the beginning, and then ignoring them completely.

But I did get the feeling they put him off a bit, especially to start with and it wouldn’t be surprising seeing as I said things like, “Drunk and disorderly teapot,” and “Stand on one leg and talk about sheep,” though sadly he didn’t. At one point I even asked, “Would you have sex with a roundabout?” I didn’t get a answer to that either.

Later Reggie told Ruth that although he’d got used to the tics of all the people on the show he hadn’t been prepared for mine. Poppy said she understood this and that it takes time to get accustomed to each person’s tics. She said she’s so familiar with mine that she often doesn’t hear them but when she meets other people with Tourettes, to begin with she’s very aware of theirs.

After the show we met up with Ruth, the other performers and their families. We had a great evening and it was lovely to hang out with others with Tourettes. Because many of those who’d been involved were in their teens they had their parents with them. Often mums whose children have Tourettes must fight hard for them and this turns them into a particular type of Super Mum. Fighting for their children makes them advocates for everyone with Tourettes, which means when I’m with a group like the one tonight I feel at ease straightaway.

I’d taken my wheelchair along with me, but Ruth very soon hijacked it. She looked cool as she wheeled about in it and a bit later, after a few glasses of wine she started dancing in it to some drumming that was going on in the theatre bar. Lots of people were watching and encouraging her and then, after a few minutes, she stood up and went on dancing. It was like some sort of miraculous healing.

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