In the Venn diagram of ‘adventure’ and ‘epilepsy’ most people would only imagine a crossover when someone is raising money for an epilepsy charity. Someone will climb Kilimanjaro, skydive, or run a marathon for a relative or friend they know with the condition. But for the most part, people do not expect someone with epilepsy to be able to do such things themselves.
I was diagnosed with epilepsy in 2015 and in 2017 I walked the Camino de Santiago in Spain, by myself. It was during that hike that I began to realise how many misconceptions there are about what having epilepsy means. Me being on the trail tested people’s ideas of what someone with epilepsy can and can’t do. When I finished the hike, I began to research whether other people with the condition were undertaking similar challenges. Aside from a few notable exceptions (such as the trail runner Diane van Deren and ‘Spiderman’ Alain Robert) there are very few epilepsy icons in the adventure community. I started Seize Your Adventure to share the few stories I did find.
There are more than 50 million people in world who have epilepsy. In the UK that works out at about 1 in every 100, but in other countries it is much higher. With such a high prevalence of the condition around the globe, it is likely that there are many more people in the adventure community with the condition who do not broadcast it. The question we as adventurers with epilepsy have to ask ourselves is why we don’t talk about it. Is it simply because having epilepsy doesn’t necessarily limit a person’s physical ability day-to-day? Or is it the fear of being limited by the stigma of the condition?
For myself, I have never kept my condition quiet, but I only started speaking more publicly about having epilepsy when I walked the Camino. There were two reasons for this: I had decided to become one of those fundraisers (whilst I did something I was going to do anyway) and talking about why the epilepsy charities were important to me was a natural segue into my own story. But the second consideration was simply about managing risk. Everyone who indulges in adventure accepts the ‘risk factor’ for our chosen activity. Indeed, it’s often part of the draw. But we still do what we can to limit the risk: we use ropes; we leave route cards; we check the weather. Having epilepsy heightens the risk for me hiking long distance in a foreign country, solo. Teaching the people around me about my epilepsy limits it.
'I have never kept my condition quiet, but I only started speaking more publicly about having epilepsy when I walked the Camino.'
Epilepsy is such a varied condition, and some aspects of it carry greater risk. Some seizures cause a person to lose consciousness, whilst some don’t. The more regular the seizures are, the higher the chance of a seizure at an inopportune moment. Some people are more physically affected than I am (fatigue and impaired memory, for example, are common side effects of both the seizures and, ironically, the medication to stop them). These variables can make ‘adventuring with epilepsy’ seem too scary a concept, a narrative that is perpetuated by the way epilepsy is presented in the media. Often, the only time we hear about epilepsy in adventure is when it goes wrong.
This may be why fear is one of the main barriers between epilepsy and adventure. There are much higher rates of anxiety, depression and agoraphobia among those with epilepsy than the general population and many people need reassurance and support to live regular lives, let alone adventurous ones. But there is so much for people with epilepsy to gain from adventure sports and challenges. This is why representation of people who already live the adventure lifestyle with epilepsy is important. And because our condition is invisible, we can’t be seen having adventures with epilepsy. So we have to write and talk about it.
As with all attempts at diversifying outdoors, a balance has to be drawn between acknowledging the limits of the condition and normalising it. And the only way to do this is to share as many narratives as possible: those where epilepsy is central to the storyline and those where it is just an everyday consideration. Seize Your Adventure brings a light to the condition simply by sharing our passion for the outdoors.
Seize Your Adventure is a website and podcast that uses the power of adventure to spread epilepsy awareness. To find out more, go here
Photos: Conan Burke