I’ve been looking forward to writing this entry and filling you in on my trip to Scotland to visit friends, many of whom also have Tourettes. It’s been one of the most amazing weekends I’ve had in ages.
Ruth, Claire and I arrived late on Friday night to be met at the airport by our friend Pauline. She took us to her house where she and her family made us very welcome. Her daughter, Aimee, who’s ten and has Tourettes, gave each of us a friendship bracelet she’d made. I was particularly pleased with mine because she’d used biscuit beads for it. The following morning, after a restful sleep and a wonderful breakfast, we headed off to the big gathering in Galashiels, on the Scottish borders. Aimee sat between Ruth and me in the back of the car and together we made it ring with tics.
Good Times in Galashiels
We arrived in Galashiels where John, a friend of ours, works at a community centre. This would be our base for the rest of the weekend.
It’s through documentaries made about John and another person with Tourettes, Greg, in 1989, 2002 and 2009 that many people have come to know about Tourettes. I’ve felt the benefit of this increased awareness in my own life on countless occasions.
The Weekend Crew
Soon loads of other people with Tourettes, and their families, had joined us. Some made trips from as far away as Bristol, some from much closer. One or two were from the end of the same road. In all there were about fifty of us ¬– and two dogs. The age-range was wide open with the youngest being just 2 weeks old, and the oldest over 80. Many of us had Tourettes, and together with our respective friends, partners, and extended family, we made a diverse, unique, and supportive bunch.
A Vague Plan
This weekend was unlike any get-together I’ve been to before because there wasn’t really any plan to it. There were no workshops and no fixed programme of events. Instead there were lots of delicious shared meals, plenty of space to sit and chat, and all sorts of games to play. There were also loads of airbeds, because most people were staying at the Centre overnight.
We had a loose framework based around food, drink and karaoke, but otherwise everything evolved naturally, which was part of what I appreciated most. At one point in the evening about thirty of us were sitting together chatting, drinking, watching Britain’s Got Talent and shouting rude and random things at the TV. I imagine, apart from the tics, this was a scene being replicated up and down the country. For me it was lovely to do ordinary things without my tics standing out.
I felt incredibly relaxed, even when I was having a ‘ticcing fit’. At one point I fell and started to fit in the toilet. In other places this might’ve been a problem, but here I felt safe and supported. Ruth and Claire came to help and Ruth held my legs still, even though her own tics meant she kept slapping my thigh instead.
It wasn’t just Ruth and Claire who were on hand to help me out – everyone was incredible, and being in the safety of the Centre meant I could move about without assistance much more easily than usual because if I dropped down there was always someone nearby to help.
This spontaneous support and instinctive understanding meant a great deal to me. Late in the evening when I was taking photos of everybody with Nathan, who’s thirteen, I started to have a bad time and he immediately, calmly and kindly held me still. I was really impressed by his thoughtful responsiveness.
MC Ruth, Rosé, Relief and Relaxation
The karaoke was fantastic mainly because we had a plentiful supply of talented singers. Many of them will appear in a documentary about talented musicians with Tourettes, which is due to be shown later this year. Ruth hosted with her usual charisma and style.
During the karaoke I felt overwhelmingly happy and made a couple of quick notes so I wouldn’t forget how I felt:
‘It may be the rosé, but I haven’t felt this free in years. Explaining my tics is key to having a good quality of life and it’s an essential skill that I wouldn’t be without. But tonight, and nights like it, remove the need to explain about Tourettes and the underlying pressure that goes with it.’
I also wrote about how good it felt to be somewhere where ticcing was what the majority of people did. This doesn’t mean I’d want to live my life in a segregated community, but it was lovely to have a break from standing out because of the noises and movements I make.
Contentment Beyond Communication
I wanted to share the joy I was feeling with the people I love and who care about me, especially Leftwing Idiot, Fat Sister, Laura and Poppy. I wrote several texts trying to express my happiness, but they went unsent because I couldn’t do the feeling justice and I chose to carry on enjoying myself instead.
The next morning we all got up slowly, gathering to have cups of tea together in the kitchen. There were some biscuits on the table and every so often Jake, a young person with Tourettes, would hold one up and tic, “What’s this?” at me. My tics dutifully responded every time, “Biscuit.” Jake soon developed a biscuit-related tic of his own, “Bourbon cream in your pants.” He told me, after my interview on Radio 4 the other week, two of his teachers had come and talked to him about Tourettes. This made me really pleased.
What This Weekend Means
I left Galashiels with a sense of liberation and renewed strength that comes from being part of a community. Very few conversations this weekend had been about Tourettes – we were too busy forming friendships, having fun, and being free.
My hope for this website is that it can build on the amazing work done by John, Greg, Ruth and so many others to increase understanding of and empathy for people with Tourettes and other disabilities. This will help make the freedom I’ve felt over the weekend become a part of all of our day-to-day lives.