Live your potential

Make haste slowly

 
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

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

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

 

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.