Beautifully Gruesome

Happy Halloween! It’s late but we’ve still a few hours left before the plastic bats and fake cobwebs get put away for another year. As I write, at home in my warm bed, I’m getting occasional glimpses of the big trees outside my bedroom window. My tics have noticed their diminishing presence: “Trees, you’re getting thin on top”, “Trees, I can see your bald patch” and “Tree, are you getting naked for the lamp-post?”

Earlier we had our Halloween event at work. Each year we open the nature garden after dark and invite children and their families to go on an enchanted trail. This year we had a spiders’ den, a bat cave, a haunted graveyard and a skeleton disco, as well fireside story-telling, pumpkin soup and amazing music.

It’s one of my favourite events and, as I’ve described before, it has a special significance for me – it was one of the first things I was involved in when I got back to work three years ago after my ‘ticcing fits’ had started happening every day.

Tonight my role was welcoming families to the garden, keeping a tally of how many people were there (395 by the end of the evening!) and giving out the magic golden stones children needed to complete their quests.

I was assisted by a young woman who I’ve known since she was ten. It was lovely working alongside her, chatting and catching up. One of the things I like most about working with children and young people is getting to know them over a long period of time and seeing them grow and mature in the process. I’ve been in my current role for almost five years so those who were very much children when I started are now young adults.

I’ve been thinking about the balance between my work with children and as Touretteshero quite a lot recently. In April I went from working five days a week to four, so I could dedicate one day a week to Touretteshero. In the last five years it’s grown from a simple idea into a complex and far-reaching organisation. I’m proud of this achievement and love my role as a superhero, but I also know I wouldn’t want to give up my job at the playground.

This evening lying here looking at the trees, I’ve thought a bit more about why I feel this way, and I’ve come to the conclusion that having a job that doesn’t relate directly to my disability is very important for me for two reasons – one more positive and the other perhaps less so.

The first is that I have a lot more to offer than just my tics. They are of course a major part of me, and my experiences with Tourettes have helped shape who I am, but being involved with my community and using my skills to make things better for children is something I value highly.

The second reason is less clear and less positive. It relates to the assumptions and judgements of other people about me, and my fear of these. For example, I know that lots of strangers assume that I’m unemployable because my tics are severe. I’m always pleased to prove them wrong and talk about my work. I worry that if my full-time job was being a disabled superhero it would somehow be seen as ‘lesser’ by other people, and that’s why it’s so it’s important that I can have my work at the playground too.

At the moment any changes are purely theoretical. I have no plans to leave my job or work less, but in the future as more exciting opportunities come up for Touretteshero this might be something I’d need to consider. This evening, though, I wouldn’t have wanted to be anywhere else: it was a beautifully gruesome event and I loved every moment of it.

Now I’m definitely ready to sleep, so goodnight trees.

One response to Beautifully Gruesome

  1. Michael B says:

    Every good Superhero has to deal with managing their hidden identity. Maybe you need a sidekick?

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