On June 27th 2011, Leftwing Idiot and Poppy came back from the Glastonbury Festival. I’d spent the weekend stuck in my old lair, unable to go up or down the stairs safely. My mobility had been deteriorating for much of that year but I’d been struggling on, trying to ignore the increasing difficulty I was having with getting about.
The weather that weekend had been beautiful and I remember vividly the frustration and crushing boredom I felt as I tried to find things to do in the only room I could use safely. I watched the coverage of Glastonbury, desperately wishing I could be there. But even getting to the bathroom was a major exercise, so the idea of managing in 900 acres of festival filled fields seemed impossible.
When Poppy and Leftwing Idiot got back I was ridiculously pleased to see them, and we went out for dinner. They helped me walk to the restaurant, but as I wrote that evening, I was acutely aware of the physical strain this was putting on them.
This realisation, and a discussion I had the following day, finally marked the start of me acknowledging what was happening and taking serious steps towards changing things. By the end of the year I’d moved to the castle, and started using a wheelchair. My life’s moved on radically since then, but my memory of that difficult weekend is still very vivid.
In a month’s time it’ll be Glastonbury again, but this year I won’t be watching it on TV – I’ll be there! In fact I’ll be performing with my old friend, Captain Hotknives. We’ll be doing an incredible six shows on the ‘Sensation Seekers Stage’, and I can’t wait.
Regardless of what the weather does I’m sure we’ll have an amazing time. Things are all set to go. I’ll have three fantastic support workers, my all terrain wheelchair, and a bell tent that I’m borrowing from work, so we’ll have lots of space to hang out in if it’s wet.
I’m sure everyone going to Glastonbury will be excited, but for me it has a special significance. It’s a testament to how far I’ve come since 2011. It’s not that my tics have changed much – if anything they’ve got more challenging. What’s really changed is my approach, and that, together with all the support I get, has meant that something that felt impossible is now possible.