Live your potential

Crossroads

I've been hearing from SCI friends recently about how their lives are different from before. How they've ended up in careers that they didn't choose. How they've found themselves in places they'd never imagined. How they never wanted to follow this path. I don't really feel that way.

In searching for quotes to go with my crossroads title, I came across this by Sol Luckman: "I didn’t look back. I couldn’t. Such is life, imaginary or otherwise: a continuous parting of ways, a constant flux of approximation and distanciation, lines of fate intersecting at a point which is no-time, a theoretical crossroads fictitiously 'present,' an unstable ice floe forever drifting between was and will be."

It echoes what I feel: life is random and unstable. I've not exactly followed a traditional or linear career path (merchant banking to medical women to millennium to toyshop via Latin American MAs, books and arts funding). I've gone where my interest has taken me. So my current destination, as a hospital governor, fundraiser and writer amongst other things, is not much of a surprise. As all of us, I am many things. I love the way Walt Whitman puts it: "Do I contradict myself? Very well then I contradict myself. I am large. I contain multitudes".

I was struck when in hospital at the regularity of many people's lives. And I imagine if your life has been that regular, where you know the career path ahead, arriving at such a dramatic crossroads as a spinal cord injury is bound to shake things up. Obviously, I would not choose my spinal cord injury. But I don't feel that my work-life has dramatically changed direction. Perhaps I am lucky in this way. I don't feel bitter about my injury. Yes, I've had to face challenges I'd never imagined. I've moved from being in a position of white, middle-class male privilege to being in a minority. My body is different. But my mind is still the same.

Dancing or not

 

I watched Dancing On Wheels yesterday, a new BBC show that's come out of the Strictly Come Dancing stable but that pairs one wheelchair-using dancer with one standing partner. I was asked if I'd go on it (to add to my reality-tv non-portfolio: I was invited to go on Wife Swap when we moved to Devizes but didn't fancy the reputation of owning the Wife-Swap-Toyshop). Watching the show, I'm glad I turned them down.

Six couples, one of whom gets knocked out each week. Three judges, only one of whom is a wheelchair user. One coach, Brian Fortuna, who was on Strictly. A long period of four days a week training. Being followed by cameras the whole time. The winners get to compete in the Wheelchair Dance Sport European Championship. No thanks.

I'm sure I would gain by learning how to dance in my chair. When I read Wheelchair Dancer's blog I'm stirred by her language of movement and flow and ease. I don't feel any of that in my chair. My chair is a mechanism for getting me around; I don't feel it's part of me. I'm only too happy to get out of it. I don't wheel with grace or style. Yes, the show is amazing to watch. Yes, it's wonderful the BBC has commissioned it. Yes, the show will change perceptions of wheelchair users. I'd just rather be an observer than a participant. I'm not ready to dance just yet.

Love conquers all

 
It seems appropriate to be writing of love today. I've been having long conversations with a friend who's got a spinal cord injury. He's convinced that he'll be alone for ever. That women will only see the wheelchair. That women will see him as disabled. That they'll find him undesirable. That they'll think of the longer-term implications of being with him and will turn him down.

I think he's wrong. He's good-looking, bright, fit, forceful. Why wouldn't someone want to be with him? In an odd way, he might have an advantage by being in a wheelchair: he could be more approachable, might be seen as less threatening. However, I think he does himself no favours by believing himself unattractive. I' subscribe to the theory that people intuitively pick up how you feel about yourself and that determines their response.

Maybe I'm wrong. It would be great to be able to test the effect a wheelchair has on perceptions. I'd like to recruit an attractive man to go speed-dating for two consecutive weeks, one time standing, the next in a wheelchair. Would it make it a difference? Perhaps, if the desired outcome for participants is sex: they'll doubtless bring their (wrong) assumption that it won't happen if he's in a wheelchair.

I won't be suggesting speed-dating for my friend. But I will be encouraging him to go online dating. And perhaps it's wrong, but I will recommend he doesn't mention his disability in his profile. Let people get to know him a little first, and then tell them. Love may conquer all, but love isn't blind.

Living with dignity

One of the familiar phrases in Spinal Units is "leave your dignity at the door". Spinal cord injury with its paralysis, its bladder and bowel complications means dignity is hard to maintain when you're in hospital, especially at the beginning of your stay. You are prodded and poked and invaded. There is some advantage in not being able to feel all the prodding and poking but it's still deeply shocking.

The debate about assisted suicide on Radio 4 and in the papers this morning reminded me of my time in the hospital. There was a round-table discussion on the radio about the importance of living with dignity: how if you did, then life was worth living. But the idea of dignity, I have discovered, is hugely subjective. My attitude has changed dramatically, largely because it's had to. Well, I suppose I've chosen to live with less dignity in some ways: I go out despite the risk of leaking, I travel despite the risk of falling, I go to venues with stairs despite having to be carried. I know some people who refuse to allow themselves to be carried, some who stay at home because they have once fallen in public. But dignity is a very personal thing. Everyone has to make their own choice about what they will and will not accept. Perhaps it's to do with pride. Perhaps it's also to do with the ultimate end: if I want to go to a show and the only way to get there is to be carried down the stairs, then I'll do so. The means (in that case) justifies the end.

And my attitude to dignity has changed as I've acclimatised myself to new experiences. The first time I asked a stranger to pull up my trousers was horrendous. Now it doesn't bother me (as much). I've explored (and continue to explore) what I'll tolerate: I don't mind being in the hoist at the swimming pool any more. I don't notice people's stares as much. It's an ongoing process for me, but my dignity is my own. I don't want anyone deciding that my life isn't worth living any more because they think my life lacks dignity.