Read about how our chairperson, Kyla McDonald, began her journey with Tourette Scotland and how it felt meeting other people with Tourette's for the first time...
We left the house, myself and the girls in silence while Michael’s screaming tics echoed around the car, interrupted only briefly by his grunting tic and him punching the back of my seat. There was so much tension in the air it felt like the buzz of electricity in a storm. None of us knew what to expect, a support group sounded like something that was for other people.
My daughters both stared out of the car windows, trying so hard not to react to the screams or flinch when the punches switched from the back of my seat to their legs and arms. Inside, my head was far from silent, worrying about what would happen at a support group. I had so many questions, my confidence was shot, and I was haunted by uncertainty. I wasn’t great at meeting new people at the best of times, but this was a whole new situation and I had no idea how to cope with it. We were barely holding it together to get through the day and I thought more than once that the last thing I needed was an hour each way stuck in the car, never mind the support group.
They were all chatting, laughing and ticcing. I couldn’t help but stare. They were just like Michael.
We survived the trip but I struggled to get out of the car. I have never been a nail-biter, but I picked at the skin on my fingers and my jaw ached from clenching my teeth. I felt sick to my stomach and my eyes nipped with the threat of tears. The girls got out of the car first, it could have been the promise of cakes and biscuits inside or perhaps they were just glad of the break from Michael’s tics. They led the way with the confidence and determination I needed, and Michael and I just tagged along, less keen to go in. The library receptionist heard us coming, I think everyone did, she pointed towards a door knowing where we wanted to go without me saying a word. This is when we met Michelle.
Michelle ran the Fife Support group, she waved us over and introduced herself. She had such a kind face with a knowing look in her eyes. She had been in my shoes and it was obvious. She didn’t even blink when Michael’s screams burst out, it was as if she hadn’t even heard him. I could hear other noises escaping from the room behind her. I took a deep breath and followed her in, stomach in knots. There were a few families around a table and some kids at the side of the room doing art and playing games. They were all chatting, laughing and ticcing. I couldn’t help but stare. They were just like Michael.
The first half hour was loud. The tics went round the room like exploding dominoes as Michael’s tics triggered the rest of the people with Tourette’s. I was nervous, I felt guilty that we were causing a disruption, but I was soon reassured, and the room’s tics started to reduce. Everyone was so friendly and full of knowledge; every word lifted my heart and eased my worries. I felt so welcomed and listened to. The uncomfortable feeling lifted, and my clenched jaw relaxed. Michelle guided the conversations and answered my questions, she had lived experience and that helped change the way I thought and felt. She spent time talking to the girls and I and to Michael. Michelle understood that Tourette’s affected the whole family and she supported everyone.
The drive home was much more relaxed, everyone chatted and sang along to the cheerful music playing in the car, it felt normal. The tics were still there but they didn’t seem quite as terrifying as they had only a couple of hours ago. I felt empowered and knew my confidence would follow. My head was quieter, all I could think about was the smile on Michael’s face when he was welcomed by the other kids and the way Michelle and the rest of the group had made us all feel like part of their family.