Liminal Luminous

The shining threshold
Disability/Chronic Illness Spirituality

Booking Greenbelt

If you are UK based please go and vote today. I’ve seen a poster which says something along the lines of ‘Conservatives only hold Croydon by 157 votes, that less than the number of friends your dad has on Facebook’. Every vote counts.

When you are voting please think about our wonderful free health service, and those who are at the margins of our society – the poor, the disabled, the elderly. I believe the only one who can look after our country now is Labour and another round of Conservatives will change our country beyond recognition and it will be a disaster.

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My confidence has been knocked considerably by getting so ill. When your body betrays you to the extent that it slowly stops working and one day literally refuses to take another step and you spend most of your time in such an exhausted fog of pain and fatigue that Disney films are beyond your capabilities then not being able to trust yourself is a side effect.

I used to have an abundance of confidence – I commuted across London on a bike, well before it became as bike friendly as it is now. I drove across the country and London on my motorbike. One year I decided I was going to sign up for a Sprint Triathlon the following weekend as a birthday present to myself. I was doing quite a bit of running at the time (I think I had already run a half marathon) and swimming too, but hasn’t really been on a bike for years. I also hadn’t done any outdoor swimming, beyond paddling in the sea. That didn’t stop me.

I would pretty much decide I was going to do something and then go and do it. I just can’t do that anymore. I can’t stand for any length of time. I get tired very easily, I can’t do too much in any one day. If I have something which I have to do (like a photo shoot or workshop) then I can do it and push through, but I need to leave padding in my diary to recover afterwards. I try not to have more that 2 days work a week on a regular basis, although I do take on additional short-term projects, as otherwise I get deeply fatigued, where I can pretty much sleep all day and still be exhausted. But I do feel like I have a life now and it’s a pretty good one.

I am so much better than I was and I want to try to do fun things again. I used to love going camping and to small festivals – not the largest ones, but the smaller, friendly ones, I’d go on my own and I want to do that again.

Yesterday I called Greenbelt festival to talk to their team and what a lovely, kind and understanding lady she was, I’m sorry I didn’t get her name. Oh, it was wonderful to be heard, understood and for them to have already made provision. I explained that I have an invisible disability and she said that was fine, they still help. This is what they do which she said might help me:

  • I can turn up a day early so I can recover from travelling and setting up and leave a day later too
  • There is a camping field which is nearer to the festival
  • There is a little truck to carry my camping stuff so I’m not exhausted by the time I get there
  • I can use the disabled toilets, so that I don’t have to stand in queues
  • There is a haven in the main festival area to calm down and rest
  • The stewards will look after a chair for me
  • I can park in the day car park, so if I can’t cope and I need to go home it is not too big a deal
  • If I need it I can hire a mobility scooter
  • Ask any steward and they will help

I cannot tell you how wonderful it was to have all of my concerns addressed before I even asked them. This is a true understanding of disability in all its forms, they had made provision and there was no fuss.

Now, once I have bought my ticket (my wonderful husband is getting it as my birthday present) there is a rather long form to fill in to make sure they have the right number of people and support available. The questions they are asking shows their true understanding of disability.

I cannot tell you how excited I am, it’s like the first time I got my whizzy wheelchair and I was able to go to the supermarket, which had been out of my ability for ages. I can go and do what I want, spend time at a festival, with access to talks, music, performance, workshops and all sorts. I am especially looking forward to the Goth Communion service. It maybe that I go and it is too soon for me, if that is the case that’s fine there are people who can help me. I may have to rest more than I want to, but at least I will be there. I will plan my days accordingly.

I’ve got the Greenbelt Spotify playlist and have already started buying albums of some of the performers.

Thank you to all the people concerned at Greenbelt, I am really looking forward to it!

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