Tuesday 1 May 2012

Don't settle and live your life your way!

I've realised recently that actually I may write about Epilepsy in a certain way. I think I maybe talk about the stigma a lot, about the barriers, about the side effects of the medication too much. They still exist, true. But one thing I've realised is there's a lot to be optimistic about too.

I guess we don't all need to have an incredible gigantic achievement to tackle the stigma. It's more important just to live our lives the way we want to live them!

One thing I've realised understanding the charities involved with the condition, about the people who are gradually coming forward with the condition, is that they are all incredible. There just seems to be something about Epilepsy that makes people who have the condition or involved with it different.
I don't have a definitive answer why but I have a theory.

I wonder that maybe because the stigma exists, because the charities are the underdogs, that it makes people with Epilepsy stronger as a result? I had a conversation with a sportsman who had Epilepsy and he explained how he had immediate demand from Epilepsy charities to work with them. What came across most was his modesty, he's rare. But it also occurred to me that he was just living his life the way he wanted to live it. His Epilepsy didn't stop him from performing in his particular sport.
He hasn't let it.

I guess the other thing that came out of the conversation was my own feeling of being really in admiration of him, given he was in the public eye and the bravery it took to talk about his condition. I think people with Epilepsy have a real loyalty to people who donate time or finance to the few charities that represent us, because they are charity underdogs given how common the condition is: in the UK 1 in 103 people have Epilepsy.
I'm pretty sure he thought I was a nutter! But I guess I just wanted to express my thanks. (I'm not an Epilepsy ambassador stalker, honest!)

In 2010 for every £200 spent on the Arts Council for England, £1 was spent on the leading awareness and Epilepsy lobbying charity in the UK, the British Epilepsy Association, or Epilepsy Action to you and me.
But boy do Epilepsy Action, NSE, Young Epilepsy and the other Epilepsy charities in the UK punch above their weight. They do so much with what their given. There's a tenacity about them.

I wonder because the condition can be isolating, if we grab onto the little pieces of awareness we get more, the little bits of help more, that we appreciate employers who are okay with our condition that much more?

But as I say, there just seems to be something about Epilepsy. The people I know and have met with the condition seem to all have a common quality about them:

For those who have read about what helped me through the Race Across America, it probably wasn't my fitness that got me through the race, it was that inspiration I talked about. This determination that I seemed to encounter over and over again. A determination to achieve personal goals. I wonder if, because of the feeling I get myself of grabbing on to the inspiration I came across, that I actually felt I was letting this group I felt very loyal to down if I didn't stick with the difficult parts of the RAAM. Maybe it was that more than anything else that got me through the race?

I think the influence of this tight-knit group has moulded me in a certain way and I can't express how grateful I am for that. When you come up against adversity I think there's a human disposition to overcome it. I guess there's just more hidden adversity associated with Epilepsy than normal.

I would never wish Epilepsy on anyone. It's not a condition to be taken lightly and death from the condition does exist.


If there was a silver lining to having the condition it's the constant quality that seems to be apparent in people I know with the condition. I wonder if Epilepsy is associated with the determination gene sometimes!

So here's a thought:
If we hold onto the qualities that we see in people who we see as like us, or represent us, maybe it will rub off and allow us to live our life the way we want to live it.
Funding for Epilepsy charities goes a long way and we should have faith that we will get the awareness and research of Epilepsy that is needed, if the Epilepsy charities continue to work in the incredible way they do now.

I should say that I have a bias here. I recently started work for Epilepsy Action 2 and a half weeks ago. I wouldn't be offended if you took my opinions with a pinch of salt, but I should say that I am 100% talking here from the point of view of someone who's lived with Epilepsy since I was 3, not as an employee of Epilepsy Action and what I say here are my own thoughts and opinions from my own experiences.

It has however given me an insight into an organisation that I genuinely feel privileged to work for. The people in the organisation are amazing, so hard working and incredibly determined. It's inspiring to get up in the morning and start work.

I'm so lucky. I have 3 amazing jobs, my full time job with Epilepsy Action and the 2 board roles that are all my passion. I hope to progress disability sport as much as I can in London through the Herne Hill Velodrome Trust and disability sport equality charity, Interactive. I love my sport and it takes my Epilepsy out of the equation, I didn't settle for something that was an average desk job.
Now, despite being in despair when I had to leave the Police 7 years ago, I feel like I'm living my life the way I want to live it. I took me 7 years, but I'm so fulfilled where I am now.

It just goes to show that controlling your seizures and having an amazing life is possible. It took me 21 years, but I got there. You may loose the seizures with the ever progressing treatment coming through, but you'll never loose the determination from what I can see.

I genuinely believe things will get better, because the people I know with Epilepsy never settled, our charities that represent us don't settle, they're amazing people, they inspired me and I bet you, there will be people who can do the same for you too.
Treatment is improving all the time and I think we can be optimistic about the chances of controlling our Epilepsy, even if it is very severe.

So don't settle, keep determined, aim high, keep the faith that Epilepsy awareness and treatment will get better and above all, strive to live the life you want to live, however that may be.

Dai Greene didn't settle, Leon Legge didn't settle, Laura Sandys MP didn't settle, Paul Maynard MP didn't settle and we shouldn't either!

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