23 Nov 2012

Post 366: A bit of existential quandering

Probably not a word in the dictionary but it’d be in there in five minutes if Stephen Fry used it! It is simply pondering a quandary... case closed, NOT A FACT.
In the light of the last post I feel the need to elaborate a bit more on what exactly I’ve been thinking about. I can just about hear the collective groans! Well, firstly I probably ought to explain my strategy for upgrading ‘things’ in my possession. I realise that disability has left me on a much tighter budget so the option for ‘throwing money at the problem’ doesn’t exist. It never really did, it just used to feel like there was some scope for it. Now I can forget about it. Getting anything done is as iterative a process as it has always been. I would say that day to day my wheelchair is probably the most important material thing I have (yawn –sad isn’t it?). When I got it at the end of 2007 it probably was in the top percentile of powered wheelchairs and was only remotely affordable because of the existence of the Trust and the kind people who donated, it is as important to me as your legs are to you. The obvious problem with getting a top-ish wheelchair is that every bloody thing that goes wrong with it costs a fortune to repair, I imagine, it’s the same if you have a La-di-da car (nothing to do with Lada). Christ, one of their own employees even said to me ‘with how much parts cost, you would have thought the chair was made out of solid gold’ and that’s what their own employees say! I have lost count of the number of times random people have said ‘that looks like quite a wheelchair’

My reply is usually the same ‘It’s still a f***ing wheelchair’ ‘I’d get rid of it in the blink of an eye if I could ever walk normally again’ but not being able to walk again is only for life, that could be a few more years of this then. Anyway, back to my point, you’ll notice from this picture

when the chair was brand new that it has headlights, now, when I originally saw them I scoffed at their usefulness, not appreciating how useful they’d be at a packed darkened Brixton academy, negotiating my way through a crowd when you realise that running over a foot means 250 kg potentially crushing it. That’s right, I am a humanitarian (mostly), well, since I probably broke someone’s foot a couple of years back negotiating my way through the Brixton crowd (it was an accident obviously), the other thing you may notice about the lights if you haven’t lost the will to live yet is just how vulnerable they are. I have knocked the bastards off several times, and to get them replaced costs £60 a headlight. Exactly!
I have mentioned him a few times but in the last couple of years I have got in touch with an organisation (it’s a charity called remap) that makes stuff for disabled people, so if I have an idea (usually crackpot), This chap (a genius really) called Brian drops in. We discuss the idea, he normalises it, does some drawings, takes some measurements, heads off and has a crack at making said thing and he then invoices me for travel and materials. Everyone’s a winner, except perhaps the rip-off wheelchair company. He is Heath Robinson to the power n! Unsurprisingly, the latest gambit I set him was to replace my lights and locate them somewhere less vulnerable. For £70 intotal he came up with this,

they’re also brighter and draw less power because they’re LEDs.

Without Irony, He might be the discovery of the last 5 years! He is a great example of how things should work. Because of the great help he has been, I think it is fair to say he has become a mate and I look forward to his visits because more often than not they are about what is possible and most of my recent experience is about what is not possible, and we all find that a bit tedious. I’m aware of the irony of being a disabled guy wittering on about what I can’t do anymore and having a go at how tedious it is being told how it’s not possible to do things. It’s uncanny how much irony can look like hypocrisy sometimes?
Anyway, my point is I’m my brain trapped in a stranger’s body. I suppose this blog is a sort of creative overflow and I was never that creative which should give you an idea of how much I am held back by this f*cking stroke. Just yesterday an old boss of mine (who obviously didn’t realise how much this has f*cked me asked me if I could run some numbers on a project he’s got saying that the old me would have ‘slaughtered this’. A nice thing of him to have said – I, of course had to decline – if you’re gonna have someone disabled on your project team. You’d better show up with professor X or Stephen Hawking! I confessed that I’d probably have a problem seeing the numbers but I remember in the first rehab ward I was on, the simplest Sudoku puzzle sapping my pathetic energy. It really is rubbish, as I had to tell Jose on Thursday that I need my days off between training, as he’d offered to torture me more regularly, I know that I’d get too down without days between physio. I’m at such a loss to know what to do with my life. I have too little in the tank to write a book for a while, I’m too tired to watch TV all day, and there’s f*ck all on, staying in bed is too boring and pisspoor for your muscles, exercising more isn’t an option, I already do everything I can to go out two evenings a week(ish)! I have well over 50 concerts in the pipeline most of which I’ve got tickets for up to November next year which I’m already pretty nervous about sorting out and going to! Feck, an existential cul de sac. I’m not Descartes (no sh*t) but even he must have had days when he read back what he wrote and said – where am I going with this shit?
Well my best guess is that I need a partner in crime, if the person doesn’t mind being part of the worst criminal double-act of all time.
Life is about making a positive difference to yourself and other people, not about boring yourself and others to tears – anyone care to help me out? Answers on an (electronic) postcard to the usual address. And while I’m here big thanks and good luck to Mick’s son Sam for his message via facebook – it’ll keep me writing this blog (it won’t stop me writing nonsense though, there aren’t any miracles)
Since the last blog post I haven’t just stopped being grateful to the people who have helped me out, I’m pretty sure that will never stop – at least I hope not. I may get a bit cantankerous but despite efforts that doesn’t change leading me to conclude that it would have/was happening anyway regardless – it’s called getting old and facing facts.
Specifically, I’m grateful to the two lads (Michael Lewis and Tim Grant) for taking me to see Skyfall

last week. Good of them and here’s what my verdict was on Facebook:

I enjoyed Skyfall (thanks to Tim and Michael for taking me), I know it's Bond so it's supposed to be preposterous but I now think it's more credible that a baddie might have hollowed out a volcano to use as a place to do 'secret' space launches, I'm positive Judi Dench said 'I know I've f*cked things up this time' Whoa - it's a different world people. Still think it should be called ' Skinfull' because of Bond's penchant for scotch, or maybe 'skyfreud' for 'other reasons'
I also went to a charity comedy Gig on Monday at the Hammersmith Apollo

and have my wonderful mate Bianca to thank.

It is rather tragic that she has to go back to Melbourne in March when her visa runs out. I have met so many Aussies who have stayed here forever even though all they have done is prop up both sides of bars and told everyone how much ‘better’ Australia is. It makes me mad that someone so nice, who has a proper job is forced to go back. Immigration rules can just ‘rack off’.

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