Sunny Sunday

Today was the last day of the Glastonbury Festival and it was gorgeous in every way – the weather, the company, the dancing, and all the laughter.

To start with I went to watch Leftwing Idiot perform as DJ Rubbish with his old friends Cassetteboy. They’ve been performing together pretty much as long as I’ve known Leftwing Idiot. Amazingly this was the first time I’d ever properly seen their show and it was hilarious! I had a particularly good view too, even better than being on a viewing platform. I was at the front on the stage side of the barriers. This was exciting, partly because of the unrestricted view of a great show, and partly because I was right next to the smoke machine that went off intermittently, simultaneously giving me a shock and making me feel like an 80s superstar.

My penultimate gig with Captain Hotknives was a quiet one because Dolly Parton was playing on the Pyramid Stage. But there were a few people in the audience who’d seen our show the day before and had chosen to come and see us again instead of catching Dolly.

Photo: Paul Surplus

Our final gig was on the Gateway Riser Stage and for the first time it was dry enough for us to perform on the actual stage. The view was breath-taking: I could see all the way down the hill into a valley, and then up the other side to where a line of ancient trees spread across the horizon. I was elated and the show felt smashing. Chris and I dedicated lots of songs to the trees, and loads of people stopped to watch and join in.

I was buzzing afterwards, but it was tinged with sadness because it was our last show of the weekend. I celebrated by heading straight to see Kate Tempest. She was great, and loads of the themes in her songs resonated deeply with me. There’s one lyric that’s true for me in a much more literal way than it would’ve been for anyone else in the tent, ‘Unless you watch your moves your own fist will knock you unconscious.’ Right on cue I hit myself hard in the face!

We spent the rest of the evening taking in bits of the Festival we hadn’t had a chance to see before. We went to Arcadia at the heart of which was a gigantic metal spider with fire and lasers bursting from its mechanical limbs – this was a bit more excitement than my tics could handle so we quickly moved on. Nearby was another impressive mechanical creation that my tics were (a little) more at ease with. It was a giant moving metal hand that was operated by someone putting their hand into a special glove controller. I stood and watched for ages as the hand was made to grab cars, pick them up, crush them and then drop them to the ground again. I loved it and was strangely envious of the dexterity of the massive machine.

Quite late into the evening I had a big ‘ticcing fit’ and needed to come out of my chair and onto the mud. I tried hard not to think of everything that would have been trodden into the ground over the last three days but my support team managed the fit seamlessly and after half an hour or so I was back in my chair and ready to go on.

We were about to call it a night when I got a text from Leftwing Idiot saying he and Poppy were heading for an area where I knew I’d be able to have a final big dance. I wanted to go but I also knew that Olive, who was one of the two support workers on shift, was due to drive us back in the morning. I didn’t want to make her stay up late and make the driving difficult. Claire was with us too but it was her night off so I was reluctant to ask her to take over. For five minutes I had an inner battle about what to do. I was tempted just to go with what felt easy and tell Leftwing Idiot I wouldn’t join them, even though it wasn’t what I really wanted to do. But I realised that if I didn’t speak up I’d regret it, so I explained how I was feeling to Sophie, Claire and Olive and we had a support worker switch around which meant I could go for the final dance I was craving. I definitely didn’t regret this decision and was very glad I’d spoken up, and that my team were so accommodating.

After dancing with loads of friends we headed back through the Festival to our tent for a final sleep before heading home. On this final journey back to camp it wasn’t the mud that was hampering our journey – it was all the abandoned stuff, particularly folding camping chairs which seemed to be everywhere, littering the ground, we could see tents and boots that had been dumped too. The level of waste was shocking. We took a short cut for people with a disabled wristband. It took us right past the Pyramid Stage and this brought back some amazing memories. Three years ago when Nez and Leftwing Idiot had been making a film together we’d come to Worthy Farm when the Festival wasn’t on and sat underneath the Pyramid Stage at dusk. As we went past the same spot I remembered what the field looked like then, without anyone else in it. I also remembered the big trailers we’d been shown full of all the tent pegs that they suck out of the ground using a giant magnet at the end of the Festival.

Back then I was at the start of a particularly bad patch. My ticcing fits (although I didn’t call them that at the time) had begun to intensify and I was struggling to maintain my mobility and independence in the face of increasingly severe motor tics. It was amazing to think that three years on I was back at Glastonbury, with wonderful support, an awesome wheelchair, and a string of performances under my belt.

I feel blessed and proud to have persevered through the tough bits to reach this point.

2 responses to Sunny Sunday

  1. Mandyque says:

    Loved your security alert tics, I’d have been falling about laughing if I’d been there :oD I hadn’t realised that you and Captain Hotknives didn’t perform together regularly, you’re both so in tune with each other and it works really well. I’m so glad that your Glastonbury experience was such a good one, I do wonder how wheelchair users manage when it gets muddy, it must be tricky sometimes.

  2. creeve says:

    you are amazing jess keep up the good work see u soon

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