This is the second guest blog post to mark National Carers Week. This entry is written by my friend and support worker Fran.
I first met Touretteshero years ago through Leftwing Idiot, before she’d uncovered the secret powers of Tourettes. I don’t think I’ve ever told her this, but I didn’t know she had Tourettes then. It wasn’t until a few years later when I bumped into her on St Pancras station that I found out. I saw her from afar and recognised her immediately, but didn’t recognise the strange arm movements or the random remarks she was making about fishing. The funny thing about Tourettes, though, is that you get used to it so quickly you can forget it’s there – and you can also forget that other people don’t understand it.
I’ve been working with Touretteshero for almost a year now, and I became more involved in supporting her after the ‘ticcing fits’ started. Care work is a sociable job, you spend time interacting with people and getting to know them, but it’s challenging too, both physically and emotionally. Physically, because you can be literally supporting somebody, and emotionally because you become deeply immersed in somebody else’s life and wellbeing.
Something that’s recently come along to help with the physical side of Touretteshero’s care is her wheelchair. I hate the wheelchair – it has one wheel that always seems to fall off whenever I’m pushing it. This means Touretteshero has to get out and sit on the pavement while I wrestle with it to repair it. Once, when this happened, a man stopped his car, jumped out and ran over to try and help. I realised it must’ve looked like I’d just flung Touretteshero onto the ground, leaving her sprawled on the pavement with an upside-down wheelchair. The people around where we work must think I’m a terrible carer!
Touretteshero was the first person I’d ever met with Tourettes. I don’t think I really knew much about it at all before I met her, so she’s shaped my understanding of it and introduced me to many more people with Tourettes in the process. Though it’s easy to grow used to Touretteshero’s regular tics, many of her other tics are surprising and often hilarious. However, I must admit that whilst I enjoy hearing what Tourettes comes up with spontaneously, I’ve recently enjoyed ‘programming’ Touretteshero, i.e. throwing out words I know her tics will pick up on and repeat (terrible, terrible carer!).
There’ve been many tics I’ve enjoyed over the course of my friendship with Touretteshero, and ‘Franish’ is a current one. At first this was a language and I was commanded to say things in Franish, but it’s now become the name I’m known by. I think this and, ‘Oh myself’ – said in a somewhat despairing voice – are my favourite tics.
Photo: Laura Page