After six weeks of touring I’ve got a few days off before we head to Gloucester this weekend. Technically they’re not days off because I’ll be doing some work for the children’s organisation I used to help manage. I went in today and was really excited to see everyone – I’ve been missing the place a lot.
But the day didn’t get off to a brilliant start. Zoë, who was supporting me, got in touch to say she’d missed her train and would be about fifteen minutes late. It wasn’t a big problem – that should still have given her plenty of time to get to the castle before the cab was due. I put on my telecare buzzer and waited.
Then I began getting a string of increasingly anxious text messages from Zoë as she realised the next train was delayed. To cut a long story short, a journey that should’ve taken thirty minutes took ninety!
In the meantime the cab had arrived. I decided to try and get in it so that when Zoë arrived we were ready to go. This wasn’t a sensible idea, but I did it anyway and with the cab driver’s help I got out of the castle and into the vehicle, where I sat and waited.
But I realised straightaway how much more vulnerable I was in the cab than indoors where, although I’d been on my own, I was in familiar surroundings and had my telecare. In the cab I was with a stranger who knew nothing about me, about Tourettes, or about what to do if I had a ‘ticcing fit’. I tried to explain, but I’m not sure he really got it. He started talking about ‘waiting time’ with the result that my mounting stress erupted and I involuntarily hit my face hard, twice.
This happens quite often, particularly when I’m excited, frustrated, happy or upset. It’s never very nice but I’m used to it, as are my friends and family. The driver however was not, and he was clearly very shocked.
I reassured him and explained, but it took a while for him to relax. When Zoë finally arrived she explained as well, and the rest of the journey was smooth and trouble free. I thanked the driver at the end for his understanding and got out.
This incident was a useful reminder of two things:
1) Tics that are normal for me can be challenging for anyone who doesn’t know about them, and it’s important for me to make sure people are prepared so they can understand and be supportive
2) Even though I feel independent in lots of ways I do need support and without it I become very vulnerable very quickly.
Some of this morning’s events were unavoidable but some could’ve been prevented. I have a responsibility to myself, and to other people, to avoid getting into needlessly risky situations.