I've often wondered why people always comment on me being resilient and why in particular I'm strongly resilient, in almost exactly the same way as my friends with epilepsy and why we have such similar goals?
You hear a lot of people talking about someone having "good genes!" But I often think, (with no disrespect to my parents), that the resilience is more to do with growing up having had epilepsy. I wonder if the fact that I understood what was really unpleasant and what was just something which was a bit of a challenge, might have stemed from using the epilepsy, in particular the kind of fear aura's I would have so many of on a daily basis, as a measuring stick?
People seem to always talk about silver linings to everything, but in the case of epilepsy, I genuinely think there is one, of the person the condition produces at the other end. It's not an arrogance I hope, to say that I can accept I'm resilient, because it's the one thing that makes me proud to belong to the epilepsy community. The resilience and determination I see so much in my friends with the condition is inspiring to me, I'm proud that people feel I have similar qualities.
But the problem that makes me bang my head against a brick wall, is that other people without the condition don't see the same people, I and those close to them, see. If employers knew about the inspiration they are, if they embraced the fact that people with epilepsy possess qualities which makes them assets and not risks, as I've heard it being described, then it's a huge benefit to both sides.
It is however easy for me to talk about this from the comfort of my home, well over 2 and a half years seizure free. I was interviewed on Tuesday, on the BBC London radio, breakfast show about my experience of epilepsy and what living with it day to day is like. In all honesty I felt one over-riding feeling... that I am extremely, extremely lucky.
Less than 5% of people are candidates for surgery that have epilepsy.
- I was one of them.
Despite the epilepsy re-occurring, I still feel incredibly lucky. Because I even had the chance to join the Police, because I have the opportunity to cycle across America and by god, I want to relish the opportunity. I have the privilege of belonging to an incredible group of people, but without going through what they do on a daily basis.
I feel guilty sometimes. People with epilepsy shouldn't have to go through what they do with the condition and still get the side effects from medication, never mind the stigma they experience on the top. I complain about the stigma, but that doesn't mean I don't want to try and do something about it. I just hope I can turn my good fortune into awareness.
The reason I was being interviewed on the radio however, wasn't really to do with anything that I had done, but the incredible development of a potential new therapy, possibly even cure for the condition. People with epilepsy, could actually be injected with 'good genes', that calm down the electrical activity in the brain, preventing the seizures. So I guess we really could answer, "I've got good genes", when asked why we are the way we are. Unfortunately the science is at least a decade off, but I so hope that people are afforded the same luck I had with how well I was able to be treated.
As for the way I am if anyone asks... It's got nothing to do with nature, or even my levi's, I just have amazingly inspirational friends.
I just hope, I can eventually do their inspiration justice in the coming year and a half.
Thursday, 22 November 2012
Monday, 12 November 2012
Something old, something new, something borrowed, something purple
Last week was a triumph to say the least, it was a major step forward to achieving the targets of Team Epilepsy Forward. I looked back at the letter sent to me all those years ago while at university, from the then 'Leader of the Opposition, David Cameron MP', wishing Team Epilepsy Forward luck in undertaking our project.
The letter might be the best part of 3 years old, but the objectives still remain the same.
The project has become more ambitious since I first conceived the idea in 2007 though. A young(ish) student, I just wanted to get some press coverage for epilepsy by becoming the first British female to officially finish the Race Across America Solo. Due to the timing, it was never really possible till now, but the foundations of finishing the RAAM in 2008 have been invaluable and even taken me somewhere I never thought possible.
At no point during the ride back in 2008, did I ever think in a million years that someone like me would be carrying the Olympic Flame, let alone the day before the 2012 Olympics began. But in many ways, being given that honour has pushed me to see that more can be done and that the project could be bigger, further reaching and better than it was before. It's hard not to aim for the almost impossible, as many people have called parts of the project, when you have something so impossibly beautiful and inspiring sitting next to you, every time you wake up. I guess this is what you could call a kind of 'Olympic Legacy'.
But the project is stronger, more ambitious, tougher and more far reaching, than what was conceived 5 years ago. The newest development, is the process of recruiting the riders to not only qualify us all for the Solo category of RAAM for 3 years, but to break one of the ride's blue ribbon records.
I'm stunned, amazed, proud and sometimes in shock of the quality of our 4 person team. Along side me will sit, ex pro and Jnr National track and pursuit champion Ben Hallam, round the world cyclist Sean Conway and the solo Atlantic rowing WR holder Andrew Brown.
They're formidable team-mates and I really believe we're now a force to be reckoned with.
The next step is to convince sponsors that we're a forced to be reckoned with too. Something which adds to the difficulty of an already incredibly tough race. There after, it's the crew and strategy to put in place.
We've borrowed shamelessly the ethos of the David Brailsford machine that is British Cycling, to make those small gains which make for a winning team. You might think, a little here or there over 3000 miles wouldn't make much difference, but on the contrary, it's those little changes and improvements which magnify over the 3000 miles. Bike fitting, great bikes, great nutrition, great crew, they all count, even which beds we sleep in can give us that extra MPH that means hours difference.
But after the proposals are written, the sponsors are on board and the crew is recruited, after the strategy is planned, the inventory written and the training done, I still default to never forgetting why I'm here, why I write this blog, why I wanted to start Team Epilepsy Forward Cycling, why I wanted to become the first British female to finish RAAM Solo.
There's purple running through my veins but no-body wants to know. I know individuals with epilepsy who want to tell people they're not ashamed they have the condition, but society, in a large part, doesn't want to listen, they don't want to confront it, amongst all the causes thrown at them, it's not important, it's not life threatening, it's odd, it's scary, it's inconvenient...
...It's misunderstood.
So here's to forward, to raising awareness, to raising funds, to making a statement, to preventing, preventable epilepsy related deaths.
For me, it doesn't matter how many records are broken, it doesn't matter I was able to carry the Olympic Flame, if I own medals, an Olympic torch or a WR certificate, for any achievements... all that matters to me is that everyone knows they are owned by a team wearing purple or an individual with epilepsy.
It matters to me, that forever and always, the first British female to officially finish one of the world's toughest endurance events, was proudly wearing purple when she crossed the finish line.
It doesn't matter a jot what her name was.
The letter might be the best part of 3 years old, but the objectives still remain the same.
The project has become more ambitious since I first conceived the idea in 2007 though. A young(ish) student, I just wanted to get some press coverage for epilepsy by becoming the first British female to officially finish the Race Across America Solo. Due to the timing, it was never really possible till now, but the foundations of finishing the RAAM in 2008 have been invaluable and even taken me somewhere I never thought possible.
At no point during the ride back in 2008, did I ever think in a million years that someone like me would be carrying the Olympic Flame, let alone the day before the 2012 Olympics began. But in many ways, being given that honour has pushed me to see that more can be done and that the project could be bigger, further reaching and better than it was before. It's hard not to aim for the almost impossible, as many people have called parts of the project, when you have something so impossibly beautiful and inspiring sitting next to you, every time you wake up. I guess this is what you could call a kind of 'Olympic Legacy'.
But the project is stronger, more ambitious, tougher and more far reaching, than what was conceived 5 years ago. The newest development, is the process of recruiting the riders to not only qualify us all for the Solo category of RAAM for 3 years, but to break one of the ride's blue ribbon records.
I'm stunned, amazed, proud and sometimes in shock of the quality of our 4 person team. Along side me will sit, ex pro and Jnr National track and pursuit champion Ben Hallam, round the world cyclist Sean Conway and the solo Atlantic rowing WR holder Andrew Brown.
They're formidable team-mates and I really believe we're now a force to be reckoned with.
The next step is to convince sponsors that we're a forced to be reckoned with too. Something which adds to the difficulty of an already incredibly tough race. There after, it's the crew and strategy to put in place.
We've borrowed shamelessly the ethos of the David Brailsford machine that is British Cycling, to make those small gains which make for a winning team. You might think, a little here or there over 3000 miles wouldn't make much difference, but on the contrary, it's those little changes and improvements which magnify over the 3000 miles. Bike fitting, great bikes, great nutrition, great crew, they all count, even which beds we sleep in can give us that extra MPH that means hours difference.
But after the proposals are written, the sponsors are on board and the crew is recruited, after the strategy is planned, the inventory written and the training done, I still default to never forgetting why I'm here, why I write this blog, why I wanted to start Team Epilepsy Forward Cycling, why I wanted to become the first British female to finish RAAM Solo.
There's purple running through my veins but no-body wants to know. I know individuals with epilepsy who want to tell people they're not ashamed they have the condition, but society, in a large part, doesn't want to listen, they don't want to confront it, amongst all the causes thrown at them, it's not important, it's not life threatening, it's odd, it's scary, it's inconvenient...
...It's misunderstood.
So here's to forward, to raising awareness, to raising funds, to making a statement, to preventing, preventable epilepsy related deaths.
For me, it doesn't matter how many records are broken, it doesn't matter I was able to carry the Olympic Flame, if I own medals, an Olympic torch or a WR certificate, for any achievements... all that matters to me is that everyone knows they are owned by a team wearing purple or an individual with epilepsy.
It matters to me, that forever and always, the first British female to officially finish one of the world's toughest endurance events, was proudly wearing purple when she crossed the finish line.
It doesn't matter a jot what her name was.
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