I spend a lot of time at the moment explaining why I started Epilepsy Forward and how I got into ultra marathon cycling. It's not exactly a normal response to a question of what you do as a job to say, "I'm an ultra cyclist". People's eyes usually widen and then ask more.
But then that's the point.
Epilepsy Forward was started because I felt like I needed to repay a debt, and in doing so could possibly, hopefully, make things better for people with epilepsy in the process. But drawing attention to a condition that people usually walk away from, would take something that stood out. It made sense then, that being a cyclist, partly to use as a kind of meditation from life, partly because I made the choice never to drive again, that if I was going to do something that would stand out as a cyclist, it would be ultra marathon riding. I wanted to be able to say that someone with epilepsy could hold some of the toughest cycling records in the world, and in the absence of seeing someone else doing it with epilepsy, felt I could take them on myself. That was the thought back in 2008 riding the Race Across America - to raise awareness, and it did a little, but not to the extent that I could have hoped. In fact it turned out to be more of a platform for honours such as carrying the Olympic flame, and that only reinforced my feeling of debt to others with epilepsy who had inspired me, that didn't get lucky being eligible to have corrective brain surgery.
Epilepsy Forward started simply as a team name for the attempt on the 4 person mixed Race Across America record, which at some point we hope to break in the future. But even as a RAAM finisher myself, I know there's far more to ultra marathon cycling, than simply the Race Across America. Arguably the Solo 12, 8 hour and 100 mile records aren't simply some of the biggest blue ribbon records in ultra marathon cycling, but in cycling period. So that's where the project has evolved to now.
I believe personally, that to change opinions, awareness, even laws, sometimes you have to do something dramatic and headline grabbing, particularly when so little about epilepsy is covered by mainstream media. If it is, it's usually a caricature of the condition, not the people I know that live with the condition every day. I think that side of the condition is easier for people without an understanding of epilepsy not to talk about, because it's complicated and varied. But the simple fact is that, if anything, that's exactly why we should talk about it.
I can't thank the BBC's Adventure Show enough then, to allow me to talk about it, warts and all. Epilepsy can sometimes be massively overcomplicated, but equally incredibly simple too. For example there are large numbers of people with the condition whose only hinderance to them living a normal life is the stigma of epilepsy. There are of course cases where the condition can be extremely complex and involve huge numbers of seizures. But then to me, what doesn't seem complex from my experience, is the bravery of the people who fall into both categories. It's simply inspiring. But like most medical conditions there's a scale of it's severity, both in terms of how the seizures manifest themselves and the frequency of seizures someone with the condition is experiencing and that isn't simple, but should be known about.
While I'm keen to go into more depth in my next few posts about why epilepsy itself isn't straightforward, when trying to assess the impact on someones life, despite it currently, in the most part, all coming under the same extreme umbrella, I'll leave that for another blog.
In introducing Epilepsy Forward properly though, I should talk about the people who enable any of the riding to happen. My crew team.
I may be a Solo rider for the next 12 month's efforts, but there's no way on earth I could do what I'm trying to do alone. The people who make up the crew team are completely extraordinary in every way. From a Coach who as her own incredible story of overcoming major injury to compete at the highest level, as well as major world medals to her name, the magician of a Mechanic or the best Crew Chief you could ask for, to the Utility Crewman, who has his own experience of epilepsy and inspires me in his own way, even if he might not realise it, by teaching me more than he realises.
Each one of them are outstanding in their own way, be it depth of understanding, compassion, ability or incredible knowledge, they all will play their part in pushing towards a common goal. My job, is at least to push myself to train as much as possible and leave no stone unturned, to make sure that I don't let them down.
While a becoming a national record holder in the 12 hour Static Cycling discipline, is a start, I believe that with the help of the people involved in the team, I can do more, which I hope will raise more awareness and challenge the stigma more.
So that's Epilepsy Forward. The project that I hope will not only grow in the future, but in the meantime will push epilepsy knowledge, awareness, research and even propel a bike, forward.