Live your potential

Paralysed in body and in mind

I've been minding a lot recently about not being able to walk. I'm not sure where this has come from, but I find myself watching the movement in people's legs, the way their feet brush the pavement, the sound as their shoes hit the road. I'm aware of the different styles and rhythms. I'm especially aware of older walkers, admiring their slow gait.

I miss the idea of my walk changing. It's disheartening to think there's a whole world I will not experience.

I'm also more aware of myself being in a minority. As far as I can tell, I'm the only young, active wheelchair user in Devizes. I feel separate. I am noticed because of my difference which precedes me wherever I go.

I suppose people who suddenly lose the ability to walk never really get over it. On the rare occasions that I get together with other wheelchair users, we don't talk about it. I always walk in my dreams. I accept the fact I'm very unlikely to walk again. And I'm coming to accept that it's ok for me to miss walking too.

Cripples and light-bulbs

So exactly how many cripples does it take to change a light-bulb? Well, as I discovered the other day: none. I had to wait until my upstairs neighbour was around. I also can't reach the fusebox, although luckily my children were around when the lights blew. And I can't put picture frames on the wall.

Other than that, I'm doing well on the living alone and being independent front. My chair now takes me around a minute to get in and out of the car. Putting on duvet covers is getting easier. I've enjoyed my first bath in more than three years, after my occupational therapist organised a portable (and surprisingly small) bath hoist. The simple joy of sinking into bubbles and feeling warmth all over my body was giddyingly delightful. I wonder what else the future holds.

(There is a cripple and light-bulb joke, I discover to my horror:

Q: How many people does it take to throw away a one watt bulb??

A: Five. A Black, a Jew, two women, and a cripple...

This made absolutely no sense to me until a joke site had the useful reference: "Notes - topical to the resignation of Interior secretary James Watt in 1983". Ah. Wikipedia tells me that "A public controversy erupted after a speech to the U.S. Chamber of Commerce by Watt in September 1983, when he mocked affirmative action by saying about a coal-leasing panel: "I have a black, a woman, two Jews and a cripple. And we have talent." Within weeks of making this statement, Watt submitted his resignation letter.")

Parting of the ways

After twenty years, for seventeen of which we were married, my wife and I have separated. Things have been difficult for a long while, but the accident made the problems a lot clearer in my mind and I decided to leave. I moved out in February and am now renting a ground floor (but unadapted) flat literally round the corner from my old home. I take my daughter to school every morning, pick my son up every day, have them stay over at least once a week and every other weekend. But other than that, I'm alone.

I think maintaining relationships after a sudden and traumatic injury is incredibly tough. I know many couples that have parted. I think a major accident will widen and deepen any cracks that were there beforehand. And there's little support for the partner who wasn't in hospital. We were the only youngish married couple with small children when I was in Salisbury. That's the place where some partners find comfort and my wife didn't find much solace there. The Spinal Injuries Association offers amazing help for people who have a spinal cord injury, but little for partners. The Backup Trust are exploring the idea of mentoring for partners but nothing's hapened yet. Like so many things, it will take one individual who feels strongly enough about this to make a real change. But partners have enough to cope with as it is, before they begin considering the wider world. They have to adjust to someone who is no longer able to do all that they used to. They have to watch and experience a changed body. In some ways, I think it's tougher for partners than the one with the spinal cord injury.

So 2010 is going to be a strange year for me. I'm having to discover how independent I really am. I'm having to learn how to cope with my own company again. Sometime I'm fine, sometimes I'm not. I've certainly got a whole lot of discovering to do.

Change is the only constant

I've just come back from a screening of Andrea Levy's Small Island. It's a wonderful story of hope, hope crushed, hope regained. It's a story of change and adaptation. It's a story of survival and of how things aren't necessarily as they seem.

There was a fascinating discussion after the film ended. It got me thinking about change and spinal cord injury. I often wonder how differently  people cope with sudden trauma - I heard this week how a spinal patient has just killed themselves after leaving hospital. Of course, nothing is black and white: paralysis didn't necessarily lead to suicide in this case. But people do cope very differently. I suppose it's all to do with your attitude to change, because that's basically what a spinal cord injury is: a change, albeit a pretty dramatic one.

I'm with the Greek philosopher Heracleitus on this: change is the only constant. I enjoy and embrace change. Of course I don't enjoy the change that's come about through breaking my back. But I think part of the reason why I don't think my paralysis defines my life is because change is not to be feared. Change is indeed the only constant.