Thursday 19 January 2012

I hate being a burden.... but....

This is probably one of the toughest posts I'll write, but I feel I need to write it, so I guess it's better to rip the plaster off.

For me, the most frustrating thing about having Epilepsy was loosing my driving licence - twice.
If everything had gone to plan and the Neurosurgery I had when I was 14 had worked 100% rather than 99.9%, I'd be almost 7 years into my Police career in Glasgow, hopefully been promoted in that time, had a nice house that I owned myself, relying on other people for hardly anything.

Life has a funny way of taking you in a different direction though and it never really works out the way you plan it. Ironically life made me have to plan more than I would have done, because I rely on public transport to get around. It's one of the major benefits of being in a big city actually - the fact that there is plenty of public transport, but the TFL website is still on my favourites page when I open my Macbook, because apart from Facebook and Google it's probably the website I use the most. I don't particularly enjoy having to plan every journey I make with military precision unless it's one I take regularly.

It's not the planning which I hate most about not having a car and a driving licence though, it's feeling like a burden. When I can't go somewhere off the beaten track without help from others and having to ask for help, especially when you're 25.

The reason it's so difficult to write this post, is because I don't want to seem ungrateful, I feel the opposite. I'm not the responsibility of my amazing mates who help shorten my journey back from hockey training, or my colleagues at the Herne Hill Velodrome Trust, who drop me off at the train station because it's late on a Sunday night. They have commitments too - family, work, their own life for example! Nor I should say, is this post meant to highlight that they should help more. What they do for me is amazing and for that lift on their way home, they'll never know how grateful I am - they do enough.

I think it's good to understand though, that people in particular those who have Epilepsy far worse than mine, will I'm sure appreciate the help so much. But nobody wants to feel like a charity case or a burden. You don't want to become the person that there is a weekly rota for giving a lift to or whatever the help is. But on the odd occasion when the little bit of help comes, you're so grateful for it. Catch 22.

It's the same with the surgery not working, I don't like having Epilepsy, but at the same time I would never complain, because genuinely, I am so incredibly lucky it is not worse and I know of far too many people where they cope with Epilepsy that is a lot worse than mine. Sometimes I don't know how they cope? It's these people who inspire me to get on with life and just get on with carrying my massive Goalkeeper kit round to hockey training despite the odd grumble to myself.

There is a massive 'but' with regards to the problems Epilepsy and many other conditions throw up though - you adapt.

Take James Cracknell, he adapted his bike so he could carry his kids on it - amazing. I adapted by living where I do and I'm lucky enough to have the stress of travel expenses not be a burden because of the Freedom Pass scheme. Anyone with a chronic disability that prevents them from driving can apply.

I suppose at 25, I feel like I have lost a lot of my independence to my Epilepsy. There, I said it.
But I have a little ray of sunshine in my life that gives me part of it back. My bicycle.

The feeling I get of knowing I can jump on my bike anytime, without planning and go anywhere in London makes me feel amazing. I owe a huge debt to that thing. I haven't quite gone as far as naming it or anything, but it feels like a burst of freedom and independence. There's nothing more satisfying than cutting through peak time traffic quicker than I would in a car and for this Epileptic, it's like having wings.

I guess you grab a bit of freedom or independence where you can find it and it's not just a bicycle that can do that. It's different for different people. I guess you adapt in different ways depending on your circumstances. If you want an example of someone who adapted to her situation, see Chanda Gunn for details. She had to give up her childhood sports of swimming and surfing, where she probably would have been an international athlete, because of Epilepsy.

She won Olympic Bronze for the USA at the 2006 Winter Olympics and is one of the best Ice Hockey Goalkeepers in the world.

Now that's what I call adapting.

No comments:

Post a Comment