Lentils and life-changing festivals

I am sitting in the car driving down to Cornwall with the sun beating down on us after a long week. I started back at work on Monday and we are now travelling South for a wedding and a reunion with another friend on Sunday and travelling back to Devon, our home nowadays, on Sunday.

This weekend is also one of my favourite weekends for other reasons. For about the last 16 years I have glued myself to the television to watch all that is humanly possible of Glastonbury Festival on BBC television. In 1998 my mum made the fateful decision to go to the festival at Worthy Farm in Somerrrset with friends which resulted in a long and tedious affair between myself and my stubborn desire to go to the music festival one year. It’s not often that I get selfishly and childishly stubborn about doing something in my life, but I did about going to Glastonbury. Growing up as a teenager, watching it year after year and knowing that due to physical impossibilities it probably wasn’t ever going to happen, hurt. Every year. I wrote on my pencil case in year 10 “I’m going to Glastonbury next year”.

It didn’t happen, I didn’t go next year. Disabled facilities aside, if it rained on Worthy Farm, it would be impossible and I could never be sure that it wouldn’t rain. Wheelchair + moist mud + idiots covered in said mud = not enjoyable weekend.

That is, until 2009 when Tom and I thought, well, we don’t know unless we try. I had a good feeling that if it decided to rain alot it might even swing in my favour and I could swim around the farm, getting cleansed by countryside sludge. Or ride a lilo.

We got tickets.
I started a Facebook page called ‘Lizzy needs a beach wheelchair’, in order to maybe, hopefully, possibly be put in touch with someone who could lend/sponsor me to use a beach wheelchair (with very wide inflatable tyres) to be able to much more easily travel around the acres and acres and acres, and so on, of hippy farmland. I got contacted by and interviewed on local radio about my ‘interesting story’, and I really thought that would be the answer to our problem. It was not. No one gave me a bloody beach wheelchair, rude!

We went to Glastonbury 2010 anyway, and it turns out we didn’t need to worry at all. About the weather. It was Glastonbury – The HOT Year, and my new concern was the tiny human foetus that I had recently discovered was inhabiting my belly. I was about seven weeks pregnant at Glastonbury, much too early to have told anyone and so we referred to our little species as codename ‘Lentil’. Lentil was about the size of a lentil according to Google, coincidences are just marvellous aren’t they.

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Aside from the constant niggling worry that I might actually shake Lentil out of my own uterus with the interesting combination of electric wheelchair and unfavourably bumpy terrain, I think it may have been the best 5 days of my life. I was at Glastonbury. We were at Glastonbury! At the actual Festival of Performing Arts, not a petrol station up the road, as delightful and cultured as it may have been.

I still watch Glastonbury with pangs of ohhhwa-jealousy (technical term) in my stomach but it is different now that I’ve been. I can say we’ve been there, felt it, heard it, smelt the air, spent an alarming amount of money on alternative cuisine there, and most of all we were just THERE. I’m not sure my obsession with the festival growing up was completely normal, but on the decent down the little road before turning into our allocated car park, we were finally there, I couldn’t stop grinning and my feelings had been entirely justified.

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One day, we will take Amélie and Geneviève. I don’t have a pencil case to write this on anymore though, the baby change bag will have to do.

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Only a bit useful

My partner has been away abroad with his dad (man holiday) for the last 10 or so days and during this time I’ve had an assortment of family (2 whole different people) coming to stay to help me. It always seems to involve a lot of preparation and planning when this happens, although aside from Tom’s occasional work trips, his father-son trip away is only alternate-yearly, so in reality it’s not a big thing.

All the same, I love having people come to visit. I just never feel totally comfortable having to rely on other people to come and stay with me just because I can’t look after myself so to speak, even if they have previously fulfilled that role in years gone by, such as my mum. Mum has known me for…erm, *most* of my life I believe, and so is pretty comfortable with knowing what kind of things I need assistance with. Only it’s not the same as it used to be.

I am majorly less independent than when I lived at home pre-uni, I can’t do many of the things I used to be able to do and nothing makes that more of a reality than being in these couple of weeks where I become the daughter of the household once again, being looked after by my mum. I start to question and analyse my every move, wondering whether I’ve always crawled from the bedroom to the bathroom on my hands and knees, and then remembering -no, this is new in the last few years. Before that I could walk upright on my knees holding on to available furniture and walls, and before that I could still walk in bare feet, carefully. Just picturing the backwards transition of my movement-abilities in my head… Oh god, am I reversing evolution? Am I going to turn into an ape and start carrying my babies on my back?

I then start to wonder if I’d tried harder, could I have held on to some of my old abilities? I hope not, is the answer. As my muscle wastage has progressed since childhood, things have got a lot more difficult and/or dangerous and so quickly learning new techniques is the only practical way of getting on with things without just laying on the floor like an upturned turtle yelling ‘hellllp, I can’t hold A hair brush the same way I used to!’ I used to be right-handed for writing and using cutlery, that got too difficult so now I use both hands at the same time. I’m not ambidextrous as such, multidextrous maybe? I quite like that, a little more comic-book heroin. Bidextrous? Hmm. I’m not sure.

There was a time where getting in and out of the bath was nothing too taxing. Now it has become something else. I don’t possess a new-age sci-fi hoist type contraption (we are intending to move house sooner rather than later) so first time I showered after Tom went away last week was when my mum and our family friend were here to stay. Getting me out of the bath was quite the spectacle. It wasn’t exactly far removed from a Search and Rescue winching operation and I was half expecting to see a helicopter hovering above the house full of confused looking air-medic type folk. The operation was carried out in stages, successfully, each one with me being the only naked person amongst 3 grown women hanging out in my bathroom. I have come to the conclusion that being dressed doesn’t make it any easier being the person in need, so I think I might move to a commune and chill with some other wobbly naked people.

I’m 27 now and I still consider myself a novice to the whole ‘wheelchair-user’ thing. I’ve only really used a wheelchair most of the time since aged about 17, which is maybe why I’m still so acutely aware of people’s reactions to seeing someone in a wheelchair when I’m out in public. I’d like to think most of my family still see me as just ‘Lizzy’, not ‘Lizzy, the one in a wheelchair’. Unfortunately, and I suppose I am probably just as guilty of this presumption at times, I can immediately see that people see me as a wheelchair before my actual person. Amongst our family and close friends, we are allowed to make jokes about my bind to the chair on wheels and what purpose it serves in my life. I think making jokes makes it more acceptable that this is what my life is now, and when people know me I am also happy for them to take a stab at risky disability satire. What I find a bit unnerving and a little surprising is moments when strangers attempt this, not knowing at all how it might be received by said person-on-wheels. Luckily for the gentleman at the beach at the weekend, he came out unscathed. Mostly. When my stepdad was loading bags of towels and picnic food onto the back of my electric wheelchair he made a joke about finding a place to stow his other shoes and some beer. The man, who’d been sat there for all of three minutes with his dog, said “good idea, what else would she be useful for otherwise?” 

My mental jaw dropped a little. I quickly retorted with “and providing grandchildren”, in a distinctly defensive tone with the agreement of my Mum and stepdad, but I don’t think he even heard anyway. Bugger. Oh well, stereotypes aren’t that bad, are they? 

  

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On the beach, not being very useful.