Using a wheelchair

A few years after being diagnosed with FA I started using a wheelchair, first for distances (I remember using it on school trips and my friends pushing me to and from school in it), and then when I made the transition to high school I used the chair to take me from lesson to lesson as I worried (or rather my parents worried) that I wouldn't be accepted in high school if I walked around in the manner that I did back then. Although I resented them at the time for pushing the use of a wheelchair around school, I know now it was a good move.

If you look up ataxia in a dictionary it will define it as "loss of the ability to coordinate muscular movement" or similar. One way to induce ataxia is to drink too much, and, after a few too many, you will find that you begin to walk much like I did.

After my Scoliosis surgery I used my chair at all times outside the house.  The surgery involved four weeks of bedrest in hospital and after that time I had to learn to walk again.  I was very weak and lost a lot of weight.  I also lost a lot of ability which I never regained - the co-ordination in my legs took a steep dive.

Inside the house I still wobbled and staggered from A to B, using walls and furniture to steady myself.  I was a bit like a human pinball at this stage as I would bounce from wall to wall until I got where I wanted to go.  I couldn't walk in an open space as I needed something to hold onto. I guess, because my sense of balance was so poor, I needed something to hold onto to foster that sense of balance that I didn't have myself.

Over the next few years I was falling more and more often.  Most afternoons I'd come home from school, plonk myself on the sofa, and ask everyone else to bring things to me as I needed them.  It wasn't that I was lazy, it was just so much easier that way then walking there and getting it myself.

I lost out on so much, didn't I?  I knew that I was back then really, but I was so afraid of using a wheelchair all of the time, and I just didn't want to let go.  Wheelchairs are strange things; to somebody who isn't a wheelchair user they represent something terrible - a horrible accident or a debilitating disorder.  To someone who needs one, a wheelchair removes barriers and promotes ability and independence.  I just had to move from one mindset to the other.

I began using the wheelchair full-time when I was 14 and I didn't look back.  I'm so much more able and independent with my wheels, and so much happier.  In a funny way it's the one that's the easiest symptomd life with - to me life as a wheelchair user is a life that I live and live well!  Yes it's almost impossible to be spontanious as access has to be research and arrangements made days in advance, but so what?  If anything the bigger effort I have to put in at the planning stage, the bigger the feeling of satisfaction when you get there in the end.  I subscribe to the social model of disability, where it's environment and not disability which disables, and I can see how our environment is forever changing for the better.  When I first started using a chair, finding somewhere that was wheelchair accessible was exceptional, now 15 years later it’s expected.

But I was soon to find that even more independence could be found in using a powerchair...