These beautiful wheels made Glastonbury 2019 possible for me. And this year has shown me how differently I think about disability now.
When you see this photo, or read this, I don't want to think for a moment that I'm anything except remarkably, resoundingly better. I'm so much better in fact, that I've walked 10K two weekends in a row and have been completely fine afterwards, even if I might not be able to get to the pub the same night. In many ways I'm now probably far more ‘well’ than many people.
Equally, as it turns out, I wouldn't have safely managed a day at Glastonbury Festival without mobility assistance this year. Welcome to my fluctuating world. And life in recovery from an invisible neuroimmune condition.
I was hoping I could get away without wheels and nearly didn't have a scooter booked at all for the busiest days which had sold out. I had had a few physical dips in the run up to Glastonbury including my first small crash in 10 months. Luckily there was a last minute cancellation for the whole five days because as it turns out, my body found the whole week really challenging.
I'm part of a project called Replay, run by volunteers, that teaches children music. I work with a family of musicians, including my brother Bernard who lives in New York and had flown in especially to join us. We teach for roughly half-day shifts in 2 large open tents, one strewn with small guitars, ukes, violins and cellos and another next door filled with electronic drum-kits, keyboards and electric guitars (and lots of headphones). Along with the rest of the crew, I teach guitar and uke and often end up helping the children write songs. We sometimes take them into a fully equipped mobile studio to record what they've created. I played keys with two music therapists who improvised dubby space operas and groups of children joined in. On the last afternoon everyone performs a song we've written on the main stage in the Kidzfield. It's a completely wonderful thing to be a part of.
And, it is, on the hottest week of the year, along with sleeping in a tent on an incline of a Somerset hill, surrounded by all the musical, creative and pleasure-seeking amazingness you'd ever want to experience all happening - all around you - all at once, and still needing to manage what remains of a chronic health condition... beyond exhausting.
My scooter meant I could dance occasionally - and still be ok. And get around full stop. I have such a desire to party right now, I took my body to its outer reaches of possible hedonism (which it turns out, currently - is about 11 centimetres) and mostly coped. The hard part was peeling myself away, back to my tent to rest after the last act. Everyone else went off into the night, into an adventure. I miss the freedom to have those late night adventures. One of the most dangerous things I can do right now is push through on a second wind, let alone go to alcohol, coffee, chocolate or drugs to help keep me going.
What mattered was that there were plenty of moments of real joy: when I danced with total freedom along with everyone else as the midsummer sun went down, at least for a song or two. I danced a tiny bit more to the bands in the backstage bars. I was mesmerised by Jon Hopkins. I saw some of our crew, including the cellist I have performed with for years perform on a main stage with Rodney Branigan. It was significant for many of us.
I sat on the top of a steep golden hill looking down as IDLES played a loud, thrashy set with a musical brother/soulmate sat either side of me. And I was surprised by some sadness about the fact I'm not performing (yet?). Because I know this isn't my time. The last thing my body needs. And that I also know it's ok. That this is a time to be receptive and inspired, and still enjoy being a part of this festival - that I'm not aware of having missed since 1999.
Glastonbury is impressively well set up for people with disabilities. On the viewing platforms I saw again how far removed what I'm currently managing is from people with really life-limiting conditions. On the last night I properly discovered the access routes that mean I can avoid the crowds and move between stages in as little as 10 minutes. The most glee inducing discovery of all was finding myself zipping around backstage of the Pyramid Stage as The Cure played - apart from actually walking into their dressing room you can't really get any more behind the scenes than that.
On the Monday afternoon as we were packing up to leave, Bernard and I walked to pick up the car and drive it back onto the site as we always do. I had handed back the scooter so had saved my steps, or so I thought. It turned out that they weren't letting any crew cars back onto the site until 9pm. We'd walked about 2 miles in the heat and ended up back at camp where we'd started. My legs gave way. Something inside me broke. My world wobbled and my body was flooded with the deepest physical exhaustion you could imagine. I can't walk another step. And I'm back in a small crash again. As usual, the upset comes - quietly. I'm offered a rest in a caravan and an apple. I manage it, as I've managed it countless times before. Still hard, only I know that this isn't a big deal any more, only a small revisiting.
The intensity of the worst that exhaustion was how it used to feel for most of the moments of my life for at least a couple of years. On many days every minuscule action or activity was a challenge. This is how far we have come. While anyone would expect to be tired, much milder crash symptoms lasted a week or so after Glastonbury. I am definitely recovering now.
Disability is a spectrum. It isn't straightforward. And recovery isn't either. I often feel I have fully or nearly broken free - and then get hit again.
Mostly what I experienced at Glastonbury was a huge amount of kindness. People constantly apologising for getting in my way when I was the one with a space-hogging set of wheels in a crowd. As I bombed around (OK - less when I was in a crowd - I don't think I hit a single person I'll have you know) I found my own way of almost dance-driving my machine, sometimes almost standing up, elated. I heard one comment; 'they're not really disabled'. And it didn't hurt (though I wonder what a ‘properly disabled’ person looks like, sitting down and looking miserable perhaps?). Not everyone understands. But I understand this better now. And I have hope that the world is changing with me.
An ME/CFS Thriver