In sport, timing is everything, it's the one thing you want to effect, but have so little control over. The thing with epilepsy is that, in every case, you can't control it either. Anyone could have a seizure at any time in their life, just like anyone could get a virus a few days before a big cycling race.
Ultra cycling and epilepsy, seem to have a lot more in common than at first glance.
Both are a battle, but the longer the battle goes on for, the stronger we become. Both are in our heads, times when your brain has total control over our limbs, no matter how hard we try and prevent ourselves from moving faster, or slower, both build to a tipping point and leave your body absolutely drained.
But there's a major difference too. One is a choice and the other isn't.
The very fact that my epilepsy over a period of the last 10 years has been such a rare occurrence, means that the fact that during the time I'm riding my bike, there's only about a 1 in 100 chance I'd fit and that makes me incredibly lucky. It means I have some semblance of freedom and a vehicle for raising awareness. It also allows me to use my bike as a tool for seizure control. The simple pleasure riding brings, contributes to de-stressing and keeping me healthy, like the fact I'll have a deeper sleep that night, eat more than I normally would to replace the carbs burned. I could go on.
As you can probably understand, there's a reason I use up as much of my time riding as I can.
I'm lucky and very privileged I have the choice to ride, that I have the choice to put on a cycling helmet rather than a seizure one.
The odd thing is, it's doing sport that is when I'm at my safest. You might not think it, wearing lycra on a road bike. But remember I'm also wearing a helmet. I've tested this theory just once on my bike and I barely had any injuries at all. I'm even safer when I'm playing hockey, where, as the goalkeeper, it's impossible for me to hurt myself I'm so padded up. But it took a long time before people started to recognise that epilepsy wasn't a life sentence and could enjoy things like the sport I do.
There was even a time in the United Kingdom, not that long ago, when to marry and be epileptic was illegal. The law only changed in 1970 in fact. It's astonishing to think that was the case, but it's part of the sad history of how people with epilepsy were treated. In fact, we live in a time where epilepsy is looked on as witchcraft in certain countries, like Tanzania.
I hope that there will be a time when everyone across the world knows the truth about epilepsy. That they know the person with the condition, can do anything any other normal person on the street could do, apart from the brief occasions when they do suffer a seizure.
But the key word there is brief. Only if a seizure lasts longer than 5 minutes should you phone an ambulance. After a couple of hours, unless they've injured themselves very badly, they will be the normal person you would know or expect them to be.
So next time you meet someone with epilepsy, please don't judge them. Give them the time of day you would anyone else. If you do then it will be a lot safer a place to live in for people with epilepsy, because they'll feel more comfortable about coming out as epileptic. I've found with friends that once I explained that I was effectively anaesthetised, it didn't make them nearly as anxious if they saw me fit. They also knew what do to, if I or anyone else had a seizure in front of them first aid wise. It normalised the seizure for them, because I explained that it was just a normal part of my life too.
I hope that during my lifetime epilepsy will be treated as normally as a common cold. That people will give opportunities to those with the condition that makes them feel comfortable enough to say they have it.
It's not happened yet, it's still seen as scary, odd etc, but with work, funding, awareness raising and education...
Maybe that time will come.
