One of the things I am most thankful for in my life, is that the epilepsy I had until I was 14, wasn't going to be the same ever again after undergoing Neurosurgery. The only thing that has stayed the same since Jan 2001, is that I will live the rest of my life, without parts of my right temporal lobe. It's just one of many things that I am eternally glad are permanent.
In life, there are so many things I love that gives me a sense of permanence, even though they may be in some cases fleeting. I have a great love of photography and many of my favourite pictures are of something, like an incredible sunset, that only last moments. It's the ability to capture the moment that I love however. But change can also be good, great even - laws allowing greater rights for people with epilepsy, increased awareness, so many other changes... However it can also be extremely damaging, life changing and disruptive, my epilepsy returning, leaving the police... I could go on.
One of the major things in my life, in anyone's life, that I made a conscious decision to stay permanent, is not driving. Yes I am at the mercy of public transport or others, to travel long distances, but it means that my bike is always the permanent fixture in my life, and honestly, I wouldn't have it any other way. The cycling community is a generous one and I've found becoming part of it in the UK and USA most notably, not only personally rewarding, but extremely helpful in my ambition to raise awareness for epilepsy.
To those that don't know a lot about the condition, it's not at all an obvious marriage, but it works. My helmet keeps me safer than I would be walking down the street and the kind of cycling that I do allows me to make a statement about the reality of epilepsy. I've heard so many people ask about the impact of cycling on my epilepsy, worries that it could adversely affect it, but it's those questions that allow an open conversation about it, which can only lead to better awareness and less ignorance. For example, last week I had to delete a comment on this very blog, because a commenter thought they would explain that epilepsy was a seizure disorder. It's not. It's a neurological medical condition. To call it a disorder, is not only an insult, it's also wrong.
Another question I get a lot about my bike riding specifically, is the understandable curiosity, that crashing and banging my head might make my epilepsy worse. It's not an unfair question, but the reality, is far from what people may think. Crashing on the bike doesn't affect epilepsy at all, unless it becomes the cause for a whole new type of epilepsy, which could happen to absolutely anyone, including people with epilepsy in equal measure and is still extremely rare as a cause.
A few months ago I had a seizure which left me scarred and bruised badly, but it only happened on the stairs, in the close up to my flat. I wasn't wearing a helmet and if I had been, if I'd just come in from a ride, I'd likely not have sustained any injury at all.
In a few days I'll be riding on a very temporary structure, that is the UK's first pop-up velodrome. Street Velodrome, have been generous enough to let me talk about my riding, but I'm under no illusions that there's a chance I'll crash, when it's something that seems a right of passage for most of the pros. One thing my epilepsy has taught me over the years, is to understand fear and how to conquer it though. The seizures I experienced were uncontrollable fear, but I can control how I react to things that make me nervous or scared and a lot of that steel comes from the bravery I've absorbed from friends and kids I've met that have epilepsy too. But while the event itself, will disappear overnight, it's my hope that I could leave a more lasting knowledge that people with epilepsy aren't fragile, or need to stay away from any form of exhaustion, or danger.
It's the kind of adrenaline rush on a bike I live for and I'd challenge anyone who believes that someone with epilepsy should stay at home and off a bike, to take it on.