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LIFESTYLE - February 2012

I read an article in The Sunday Times this weekend about Grace McCleen who has written a book - The Land of Decoration. Her achievement is described as a triumph over a series of traumas including serious illness. And, ya know, she’s not alone. There are a lot of people out there writing, working, campaigning and overcoming the obstacles of ill-health. And yet, pleased as I am by the success of others, I do feel hopelessly inadequate by comparison.

I'd like to be more noble and able to rise above my own petty feelings but the success of others always brings me to this question: why can’t I triumph over my illness? Ugh, piteous thought, isn't it? But there it sits and, given that I am not into excessive introspection, there’s no easy answer.

I wonder whether I am the only person, dependent on other people and a lot of equipment, who gets completely overwhelmed by the constant - and boring - whirl of organising, and integrating with, said people and equipment. My time is absorbed by the basics of mere functioning. I have no uninterrupted space in which my creative thinking might develop!

For example, at the moment, struggling with the practicalities of travelling by wheelchair in our car, I’ve decided I need a power wheelchair that is lighter and more access friendly than my Balder which can’t even get up/down one step easily and demolishes everything it comes into contact with - a bit of a problem in London where every other building has a step, wonky pavement access, ridiculously inappropriate ramps or stupidly tight turning spaces. Consequently I spend most of my outside time in my old folding manual wheelchair which is hell to manoeuvre, requires serious heft to get me in the car and doesn’t fit on the car ramp easily…and that’s not even mentioning my lack of independence, discomfort and the fact that ONLY EaZyD can manage it safely(ish) because he’s got some serious muscle which my girlfriends do not!

Dreading the purchase process because even wheelchair-using salespeople tend to be youngish, fit, Spinal-Cord-Injury types who have little appreciation of the needs of those of us with progressive neurological illnesses, I did some online research then rang Gerald Simonds (on a recommendation), a few weeks back, and explained what I needed. So far, so good, right? Well, yes, until their representative tried to sell me a wheelchair like my Balder but not as good! Eventually persuaded by my argument - that ‘I’ve already got one wheelchair that doesn’t do what I want, I’m not paying thousands for another!’ - he agreed to source the two wheelchairs I did think suitable, in the size I need, and get back to me.

And has he got back to me? Like hell he has.

Not for the first time, I am struck by the complete absence of the service concept in the disability industry towards the private client anyway. I imagine this is because we’re small business to suppliers at the moment - I guess most of their money comes from NHS/Social Service contracts. But what in hell are you meant to do when you’re out there, with limited physical resource, paying with your own money, with no help or support, making it up as you go along?

Depressingly, despite years of illness and HUGE amounts of effort, I am still not able to establish a level of comfort in my environment that is sufficient to allow me more than limited function. Continually having to deal with this exhausts me and, niggling away, I cannot shake the thought that surely it shouldn’t be as difficult as this? How do others like me manage?

I honestly have no idea, despite a lot of investigation, but as I read of others’ achievements, I am left feeling entirely useless at the huge amounts of time I spend on stuff that, whilst undoubtedly necessary, bores me rigid, drives me insane and saps me of the will to live rather than writing my own book that I’ve been thinking about for three years now or being otherwise creative.

Which brings me back to my original starting point. If I can't even get a salesman to bring a couple of wheelchairs to my house despite weeks of phone calls (and this is but one example of many similar such administrative dysfunctions I could bore you with…), how on earth am I expected to find time and energy for an outburst of creative expressionism that gets huge publicity and makes me so much money that I’m in the papers for being so selfish as to claim the benefits I’ve worked and paid for?

Again, a question to which I have no answer. No time to think on it now, I’ve still got to get hold of someone who actually wants to sell me a wheelchair - feel free to pass me any recommendations.

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