Live your potential

Living with dignity Part 2

2010-03-11T20:57:00+00:00

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.

Unfit and fitter

2010-03-03T21:45:23+00:00

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.

Crossroads

2010-02-23T21:19:46+00:00

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

2010-02-17T21:43:22+00:00

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

2010-02-14T18:58:37+00:00

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

2010-02-01T22:35:23+00:00

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.

Make haste slowly

2010-01-23T11:55:51+00:00

I had my first interview for six years yesterday. Since leaving the Millennium Commission back in January 2003, I've run my own business and have been dealing with the impact of becoming paralysed. Sitting in a room with five interviewers was an experience good to get back. Waiting in the office, surrounded by the chaos of a business with the stationery cupboard and photocopier and ringing phones brought back good memories. I miss being part of an organisation.

I had applied for a Board level post because at the moment, that's what I want: a day a month when I know all the dates in advance. It's paid, I get expenses and it's easy to work around childcare. I love being a hospital governor and Salisbury Hospital is very close to my heart, but all I receive is travel expenses. It's not enough.

I've changed in many ways since my last interviews. I'm older, perhaps wiser. And I'm calmer it seems. I have a different attitude toward time, and a different attitude toward fate. An acceptance of what will be, will be.

This was tested to the limit yesterday. My alarm failed to go off so instead of getting up at 6.30 to be at the London venue by 11, I woke at 8am. I couldn't find my suit trousers and I only had one shoe. I got stuck on the drive to the station behind a line of slow-moving traffic. I left the details of where I had to go at home. When I tried to put on my tie in the train, I discovered that my neck has got thicker (transfers? age?) and I couldn't fasten the top button. And rather than panicking or driving madly, I smiled in bemusement at this comedy. I simply can't get dressed much faster. I can't run back upstairs when I forget something. I can't sprint to the taxi. I can only move at the pace I can move.

I think months of full time bed rest as well as being paralysed has taught me a sense of acceptance. This doesn't feel like a passive state of resignation. Rather, it's a realisation that I have a choice about how I react to situations and that there are only certain things I can change or control. Although I will be changing my alarm clock.

Rose tinted perspectives

2010-01-20T10:02:48+00:00

I'm still mulling on this idea of dependence. I was on a three day course at the weekend. I was cherished. And I realised that I enjoyed being looked after. Yes, I could have got my own coffees but I've not yet mastered the wheeling safely with hot drinks technique. I could have pushed myself up the steep hill but I was shattered from early rises.

My feelings about asking for or being offered help change. I suppose all I need to do is be aware of how I'm feeling at the time. Sometimes I do want help. Sometimes I don't. Sometimes I want to be independent and do everything for myself. Sometimes I don't. There's no right or wrong way of behaving: I just need to do what's right for me.

And I need to be aware of the impact of my choices. By not getting my chair out of the car, my damaged shoulder stays pain free. Yet now that I do get my chair in and out, the increased pain is balanced by the increased freedom. I no longer need to wait for help: I just hop out the car when I arrive at my destination. This liberation makes me question choices that have been coloured by the perspectives of healthcare professionals: my occupational therapist emphasises the need to reduce exercise in order to lessen exhaustion. This reminds me to ensure I balance such perspectives with those of others, especialy wheelchair users. There are many viewpoints out there and this is still a very new world for me. I've got a lot to learn.

Dependence

2010-01-14T17:37:00+00:00

The snow and various conversations have got me thinking about dependence. I've written before about my independence, the fact that I have full use of my arms and that I don't need a carer. I've commented how lucky I am.

And yet how independent am I? I'm stuck in this weather. If I fall outside, I cannot get back into my chair. I can't manage steps or stairs. Hoovering is hard as is stripping beds and washing floors. Without an occasional cleaner, I can't keep the house tidy. Without strangers helping me down steep pavements I can't cross the road. Without a friend to push me I can't get through the snow. Without a special beach chair, I can't wheel on the sand. I'm not independent.

I fear increasing dependence. I fear my shoulders giving way and needing a carer. And ironically, I have allowed this fear to increase my dependence. I choose to do less in the hope of preserving my shoulders. I choose to ask strangers to put my chair in the back of the car rather than face the effort and strain of dismantling it myself. I choose to ask my children to go upstairs to get things for me rather than transfer on to the stairlift. I allow people to make me tea when I'm sitting on the sofa rather than getting up and making it myself.

Of course there's a balance. Sometimes it makes sense to ask people for assistance. Without it, I simply cannot get over steep pavements. I cannot move in the snow. And do I want to be truly independent? I like being part of a community where we depend on one another. I'd never manage the school run juggling act without the community. I like this interdependence. Yet I've got the balance wrong. I do less than I could. And I may inadvertently be causing myself greater health problems by doing less. I'm less fit. I'm less flexible.

But I don't want to go to the other extreme: refusing all help. A friend who does live alone, who is extremely independent, who never asks for help would rather his life were other than become dependent. "As soon as my shoulders go, I'm booking my one way flight to Switzerland". But I can become less reliant on others. First step, get my chair in and out of the car. My first New Year resolution.

Snowbound

2010-01-10T21:32:00+00:00

I am snowbound. I have been stuck inside the house for days. And now I understand how people can die at home in bad weather. I'm fearful of pavements. I'm alarmed by ice. My wheels spin in the snow and I go nowhere. I went out to the car yesterday and got stuck. I'd thought that if I lifted my front casters off and balanced on my back wheels, I'd be fine. But a combination of poor back-wheel balance and deep snow left me trapped. I'd still be there if my daughter hadn't wondered where I was.

It's given me a deeper sense of the implications of being paralysed. This is the most disabled I've felt for a long time. I'm trapped by the weather and appreciate why people who are unsteady on their legs are reluctant to leave their homes. And I'm struck by how easy it would be to freeze to death: a slip when walking to the car, falling... It's so cold I don't think I'd last long in the snow. And because I can't safely get to the car, let alone further, my horizons have collapsed to the four walls around me.

The cold takes me back to basic needs: the need to stay warm and sheltered. I just want to stay in bed with my three duvets and read. I wonder how wheelchair users in cold countries cope. The kids are thrilled that their schools have been closed. I don't share their enthusiasm. Snow should be about playing and fun and snowball fights and sledging and excitement. Being a (literally) sitting target in a snowball fight loses its appeal after a while. I've lost the joy that comes with the cold. I simply want to hibernate.