How do you still get to go to Glastonbury Festival when you feel constantly fluey and can’t walk more than 25 mins a day? Performing was so out of the question, at least that never became an issue. I phoned the festival access line expecting to have to fight. I don’t look disabled. I don’t know how this works. And a woman at the end of the phone turned out to be an occupational therapist, "We have one or two other crew members with M.E. We’re a fully access friendly festival. You can hire a subsidised mobility scooter, we have disabled camping and toilet facilities, a shuttle bus service, special routes that help you avoid the crowds, the viewing platforms and a laminate for whoever your PA is to join you up there”… All I had to do was send in my latest letter from my consultant. I almost cried with gratitude, ‘Thank you’. ‘That’s fine’ she said, unmoved, reminding me that all this was simply my right and nothing more than that.
And I went. I was determined the flu stuff wasn’t going to get in the way. And it didn’t. And it was one of the best Glastonburys of my life. Because I was walking around so much less thanks to the scooter I had so much energy. I’m convinced that something happens to me in that valley of hills. Lay lines, the collective good will of that many people having a great time. Who knows?
I felt really supported, especially by the crew who include my brother. I’ve performed for years with so many of them and we've become a family (many of us balance teaching and performing every year). Together we form a project in the Kidzfield called Replay that introduces children to their first instruments; guitar, ukulele, violin and cello. We have electronic drum stations, a recording studio, an interactive rock band for kids and samba sessions. Some children come back every year, some tell us we’re the reason they now play an instrument. I was able to roll out of my tent and do whatever I could, I taught a bit and was useful.
I would like to tell you I partied the back stage bars like a Rock Goddess. Another year. This time I took a ton of naps. I was in bed around midnight most nights and slept like a baby. I was fed and watered and did things in my own way, totally OK with only catching whatever music I was able to see.
Highlights were watching Radiohead with my guitarist Maitreya, seeing an old hero, Ani di Franco, and best of all catching the Magic Numbers play a special backstage gig for a few moments before I had to drag my body to bed.
Zipping around on the scooter was a total hoot. Because I was able to get around quicker than anyone, I ended up being a bit of a roadie, transporting anything from cello bridges to loop stations across site. Despite a bit of speeding I contend that I was overall a very good driver. My only transgression was accidentally going forwards rather than backwards, into the edge of the vast crowd of people dancing to Shaggy singing Mr Bombastic.
There were a few moments of hearing people sing powerfully that got to me. This deep, deep well of sadness, I just want to sing again. It's the singing, far more than the performing that I miss. A strange, mute, powerless feeling. Apparently, asking my voice to get through more than about a song at the moment is the equivalent of expecting a violin to play a note with all the strings pulled slack.
I found a piano I find every year, an out of tune upright near the stone circle that looks out over the valley below and had a tinkle, letting a few sounds out of my mouth. When I stopped, one of the couples who were sat watching started chatting. They rather sweetly seemed to think that this was ‘my’ piano, and my job at Glastonbury was to sit there and play it all weekend! Perhaps I did have a little Glasto gig after all.
In fact it was all so joyous, I sometimes had this slightly Cinderalla like fear….what happens when the spell is broken? Will I go back to how I was again? But surely if my spirits (with a bit of help from a wizard who had offered to send me some extra magic) can keep it up for a week, I can keep going?
Both happened: I didn’t keep up that level of activity but since Glastonbury I have definitely been slightly more functional. Simple, everyday things I couldn't do before that I can now. I still have the flu stuff but I'm doing my best to make it less of a big deal. Walking 35 mins a day now even if the day to day reality can still be isolating. But I'm putting a marker the sand - ok, a little flag on a cocktail stick. I did all of that at Glasto and found a way to stay within my physical limits, not a hint of a crash. I had a wonderful time. I'm declaring this a victory.
An ME/CFS Thriver