Sunday 20 May 2012

What happens when your dreams come true?

I hope my declaration doesn't put any of you off my blog, but I have to say I've had an interesting weekend. Thanks to my dad, I've been a die hard Chelsea FC fan since the age of about 5 or 6 I think, at least a couple of decades, put it that way!
It probably hasn't escaped your notice that my team and fans like me had their dream come true, when yesterday we won the biggest prize in club football, the European Championship, or Champions League to you and me.

After I saw the trophy in the flesh coming down Hortensia Road in Chelsea with the team, I thought, what do we do next? I guess if you're striving for something for so long that is the pinnacle of achievement, you don't really plan what you do after it happens. But then again I guess there is only one thing you can really do.

- You do more.

I suppose for people with Epilepsy, the pinnacle is being cured or completely in control of their condition. So what do you do once you cure your condition? Well you do more.

I sometimes feel incredibly guilty that my Epilepsy is under control whilst others didn't have the same luck as me. But I suppose I'm proud of myself in a way for taking on the Race Across America. I wanted to do it to raise awareness and I did in a small way. I became the youngest British female to ever complete the race across all categories. So what do you do when you have achieved that dream? You aim for more, the first ever British female to complete the RAAM Solo, the first ever female to win the race outright and claim the $25,000 prize which is still on offer for that cyclist.

I guess for Chelsea, there has never been a club in history to successfully defend the Champion's League, that could be Chelsea's new dream. Maybe even to become World Club Champions?

I think one of the reasons Chelsea were successful in winning the Champion's League was because they wanted it, more than anything. I think doing it again is harder, you loose the raw desire you had because it has already been done.

But if something wasn't hard, why would it be worth doing? Why would it be worth the energy and desire to achieve?

For me, my dreams came true when I had my Neurosurgery in the Sick Kids Hospital in Edinburgh.
It changed my life.
The fact that I am now going to be carrying the Olympic Flame in London is just icing on the cake, but I want to do more than just carry the flame. It will probably be one of the most memorable experiences of my life. But in being given the torch after my 300 meters, I want to take it back to the place that gave me the opportunity to take part in my first Race Across America to say thank-you. Because, quite frankly, I wouldn't be carrying the Olympic Torch without the Doctors and Nurses who looked after me in the way they did there.

I feel I can do more with my torch than just put in on my mantle piece. I hope it shows the young kids in Ward 7 of the hospital I was treated in myself, of what could lie ahead for them.

The one thing that keeps my guilt of not being in the situation, that other young people with Epilepsy who don't have their condition controlled or cured in check, is the constant faith that people who are involved with the condition will do more. That scientists will find a cure for Epilepsy, a dream drug or something like that.

If we achieve our dreams, why settle?

There's always a new dream to achieve or something more we can do with our dreams when they come true.

Thursday 17 May 2012

The legacy of rejection

Legacy is a word which is used a lot at the moment: Olympic legacy, social legacy, legacy wills.
I wonder what legacy rejection leaves on someone?

As someone with Epilepsy, I've experience my fair share of rejection, from boyfriends who don't want the baggage, from school because I was different. Even to the Police who told me I had to resign or they wouldn't state on my paperwork why I was dismissed, rather than properly medically dismissing me because the medical legislation was changing.

But rejection isn't unique to people with Epilepsy, or me, it happens to all of us. None of us are perfect, but I wonder if we're not perfect because we've experienced that rejection in our lives. Maybe the legacy of rejection is that we experience a paranoia to do with something about the way we act? It's very hard to shake.

But maybe there is also a legacy to paranoia:
- self awareness.
It's a silver lining that I think, can, not only help improve ourselves as people, but also give us an understanding and context into the way other people are the way they are.
- The people who sail through life, may be the people we aspire to be, but I very much doubt they have the insight that the people who don't sail through life have because they haven't experienced the same rejection.

But how do we come across our self-awareness though?

Well I certainly don't think it all comes to us over-night, but we might actually stumble across something which clicks with us and makes sense throughout a thread of our behaviour. I guess if we are curious about why we behave in the way we do, then we will come across these things, that eventually build a picture up about why people react to us in a certain way.

Although sometimes it just takes us to communicate with someone, especially those close to us.
My brother told me something recently, which actually made complete sense and was a kind of eureka moment. I'm sure I'll have many more of them to come. I'm sure we all will if we are open to them.

The one thing rejection has taught me is never to judge people for the way they come across. You never know how past rejections or experiences could manifest itself. Maybe it could have left them with a legacy, of a lack of self confidence. Maybe that's the reason why they behave in the way they do?

Whatever the reason for it, we all have a legacy left with us, 'our personal baggage', that makes us who we are. I think for the things we can change, that maybe makes others feel uncomfortable, we should.

It's all very well saying "you can take me or leave me", but how then, do you develop as a person?

Friday 11 May 2012

"I would run 500 miles"

Given the recent publicity about the recent London Marathon, due to shocking death of Claire Squire, I wondered what is it about people that makes them take time out of their normal lives to train, take part in a challenge and raise money for a cause?

I think it's fair to say that many people do it for the sport, for the prestige and maybe a sense of feeling better about yourself, that you have done your bit for charity in an ever increasing materialistic world. I suppose I would ask, would you give up something like your bottle of wine, fancy dinner, posh coffees or regular beer for a week and donate the money to charity instead? The other side of the coin is the people who donate. Do they do it because their friend is doing something, because they liked a charities marketing campaign, or because they feel they're 'doing their bit' that way?

I would hope that actually while these may be factors, that actually people take part or donate to charity because they are human beings. I suspect in many cases, the true reason people raise money for charity is tragically for reason of love. A death or serious illness in the family, something which has affected the standard of life to those close to them.

I think because we love people, we encounter the worst feeling you can encounter of not being able to do anything to help that loved one. It's very natural then, that as human beings we would want to try and help. Two of the most natural feelings people have in them is compassion and love and without it, we wouldn't be the human beings we are.

Cynics would say, people want to feel a sense of empowerment, that ego comes into many of the challenges people take on. I can't say that's not wholly untrue. In my case I felt helpless regarding the fact Epilepsy charities are underdogs and that they didn't command the presence that a big Cancer charity did for example. I thought the best thing I could do was to be the first woman from the UK to cycle 3000 miles across America officially as part of the RAAM. But the reason I am still planning on doing it and strive for press coverage of it, wasn't so I could become a figurehead. Quite the opposite, I tend to dislike people who show off because they've done something. I wanted to do it, because I was, to be blunt, shit scared one of my friends would die from SUDEP (Sudden Unexpected Death from Epilepsy) and that it could've been prevented if someone had known about the condition and how to deal with seizures.

I make no bones about my ambition to have the attempt documented on television. But it would give me a chance to actually talk about Epilepsy, it's risks and how anyone could help. I'd rather it not be something like RAAM, as the race has it's risks, but if it takes me to do the world toughest endurance sporting event to get the opportunity to talk about Epilepsy, then so be it.

I wouldn't do something with the risks if I didn't feel like I had to, I don't want people to donate to Epilepsy Action or other charities because I died trying, so I'm taking every precaution possible to make sure I'm safe. But there are still people with Epilepsy who don't know about SUDEP and the precautions they should take.

I suppose the I'm cycling to prevent the tragedy that would motivate someone to do something like the RAAM or a marathon, but it's still the love I have for my big brother Phil and my friends like Georgia and Susie that motivates me more than anything to achieve my goal.

I always say, if don't know what you're riding for then it's so much harder to get through the tough periods a race like RAAM throws up.

But I know what I'm riding for, I know the people I'm riding for and when the lactic acid in my muscles really start to kill, that's what will keep me going.

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!