Live your potential

"Just" is a four letter word

It's odd, the words you lose from the dictionary after a spinal cord injury: walk, step, stand, run. And "just". I can't just hop out of the car. I can't just dash inside. A small word. But a lot of meaning.

Connection and impact

 

I think life is about connection and impact. We need connection. We make an impact. I was struck by the parallel nature of these two ideas in the fantastic (and wonderfully accessible) Ikon Gallery in Birmingham yesterday. There was an exhibition by Joao Maria Gusmao and Pedro Paiva with the delicious title "On the movement of a fried egg and other astronomical bodies". They make silent 16mm films and the one that got me thinking was "The Great Drinking Bout". "Here, a group of ten men with blackened faces pass a clay pot full of liquid between them, each drinking in turn in a kind of tribal ritual". The connection between the men is palpable, despite the lack of words. And the impact their actions have on each other is fascinating to watch. They copy and mimic and ignore and surprise.

We all have impact, whether or not we are aware of it. One of my current challenges is to become more aware of the impact I have in what I say and do. I was telling a group my accident story in a very calm and emotionless way last week. One of the listeners broke down. I assumed it was because it brought up memories for him. But it turned out he was struck with grief at what had happened to me. 

We all have impact. And we should use it to make a difference in the world. If I can challenge just one person's assumptions about disability or masculinity or parenthood, say, then I'm making that difference. If I can offer comfort and understanding, then I'm making a difference. I'm not changing the world in a dramatic way but I am having an impact. Along with connection, isn't that enough?

Living with dignity Part 2

I've been thinking more about living with dignity. I think dignity is partly about appearances. I struggle to put on a double duvet cover. I could just as easily leave it uncovered and wash the whole duvet every now and then. But apart from cleanliness, it's also about wanting to have my bed look like a bed. For the same reason, I put a sheet down, although I could just as easily sleep on the mattress cover. And I do this for myself: I feel better about myself and my life when I have a tidy, "normal" bed.

The same applies to clothes. Yes, I hang about at home in sweatshirt and tracksuit bottoms but I'd rather smarten up when I go out. I've got the added (self-imposed) pressure of not wanting to look disabled, whatever disabled looks like. In my head, disabled dress is scruffy, dirty, falling to pieces clothes. Not sure where I've got these attitudes from, but I feel I have enough assumptions to cope with without adding my appearance to the list.

There's a difference between private and public dignity I realise. Few people see my duvet cover but it matters to me. More people will see my bottom hanging out of my trousers and that also matters to me, even if I won't see them again. In a strange way, I suppose I'm an ambassador for disabled people, as is anyone who's disabled: challenge assumptions, live out your life with pride. Get people thinking.

At the same time, private dignity is perhaps less important. I've been wondering about this following a meeting with a design student who came across my blog. He wants to design a product that increases the dignity of people with spinal cord injury. I suggested something for bladders, a subtle "inco pad" (aka nappy) that uses modern, more figure-hugging materials than the standard products on the market. These are, indeed, a big nappy. He was more interested in creating a product to do with sex. Personally, dignity in sex isn't such an issue. I'd hope that once I got that intimate with someone, I'd have broached all the undignified things that might happen. Whereas with leaking in public, well, that's just plain horrible. I don't think I convinced him.

Unfit and fitter

I used to be very fit. I've raced half-marathons and been stroke in the First VIII boat at college. In 2000, I somehow ended up in the finals of a national fitness competition. I found myself with 100 others in the RAF's massive gym in Cosford with tv cameras and crowds and very loud music. My resting pulse used to be around 43 beats per minute.

Then I broke my back and spent 14 months in hospital with a lot of lying about. I'm not fit any more. And like most people who use a wheelchair full-time, I have a fairly sedentary lifestyle. I drive far more than I push. I get my chair in and out of the car, I swim but I don't go to the gym. I row twice a week but doubtless eat more calories than I burn, despite a small and healthy diet. Yes, I'm over forty. Yes, I know I could be fitter.

Heart disease is now a leading cause of death in people with a spinal cord injury. My pulse is 55 and whilst low, this suggests lack of exercise rather than fitness. So what more should I do? There's the risk of damaging my shoulders by overdoing things (for an interesting view of the pros and cons, read Tim Rushby-Smith's blog article). But set against the risk of a stroke, I reckon my shoulders lose. I can cycle more. I can see what facilities my local gym has. 2010 must be the year of exercise.