Fran Turauskis: “My seizures are a reminder to protect myself”

Have you always been a fan of the outdoors?

My family and I did a lot of camping trips throughout the UK when I was a kid. The first mountain that I ever climbed was Mount Snowdon: I managed to get to the top when I was 8 years old. It was also an introduction to hiking euphoria. Your mind switched from “This is horrible” while you’re climbing up to “Oh, shooting stars” when you’re looking around and “Well that was fun” by the time you’re back in the car. 

I almost have a split personality when it comes to the indoor-outdoor balance. It’s all or nothing. Today, I spend most of my days inside, writing. But a few years ago, I needed a bit of an adventure. I looked from thru-hikes in Europe and decided to hike the Camino de Santiago for two months. 

What made you take such a big leap?

The Brexit referendum was a big wake-up call. I was surprised by the results and, like a lot of people, ended up doing a big reassessment of what was happening. At the time, I didn’t understand my country. I felt more connected to the European idea than to England. The uncertainty of how our world would look like post-Brexit made me want to explore mainland Europe and come back to my country afresh.

You were diagnosed with epilepsy in 2015, just two years before you left on your adventure. How do you prepare for a thru-hike when you have an underlying condition?

My mum was hellbent on me finding a partner to hike with on the trail. But when you walk with other people, you have to go at their pace. More often than not, that pace is higher than mine. When I’m overexerting myself, the chances of having a seizure increase. I made the balance almost subconsciously and decided to go on my own.  

I mostly focussed on something that I know works for me: my medication. Since I started medication in 2015, I haven’t had any seizures. Epilepsy patients normally get a month’s supply, so I had to ask my doctor for an extended amount and make sure that I take it at a certain time. It often meant stopping in the middle of the path, though I definitely forgot it often in the evening when chatting to the other hikers I’d meet.

Speaking to people about my epilepsy felt like my safety net. I’d simply explain to them what to do if I had a seizure and answer all their questions. I also have a tag on my backpack that mentions my diagnosis and what to do in case of an emergency. 

That requires a lot of opening up to strangers. How did they react?

On the trail, there’s always some people that become infamous for one thing or another. There was the guy hiking with a didgeridoo and the German who slept under a tree for a couple of times. Stories like that travel up and down the trail. At some point, I introduced myself to someone new and he responded with: “Oh, I know you, you’re Francesca.” It was strange to be one of the stories that everyone seemed to know, but I don’t mind sharing my story.

Seems like quite the educational experience for your fellow hikers.

You could say so! It inspired me to do more after I came back. I launched Seize Your Adventure: a website and a podcast that advocate for people with epilepsy in the outdoors. Epilepsy is a complicated condition, with complicated – but interesting – patients. Everyone is different. Through the podcast, I educate people who don’t know about epilepsy, but also show that the condition doesn’t have to be all-controlling. 

I think the biggest take-away for other people with epilepsy is that you might have to adapt, but you shouldn’t stop going after your passion because of your seizures. Oftentimes, people who’ve been enjoying the outdoors their whole life, stop after being diagnosed. They have been used to the risks of rock climbing or hiking, but when that risk is heightened by epilepsy, it feels too much. By getting creative, you can reduce those risks again. Go bouldering instead of rock climbing, so you’re lower to the ground and don’t have to mind the ropes. Or go hiking with a buddy who knows what to do when something goes wrong. 

What have you learned about yourself in the process?

I now realise I need the alone time and the physical exercise that the outdoors offers. I need to go somewhere physically different than my everyday life and focus on an activity to give my mind the space it needs to wind down. There’s a simplicity to hiking or running. But it also gives you the rewards of having achieved something. 

The Camino was the most physically challenging thing I had done up to that point. Just being able to know that I can do that, is so powerful. It particularly changed the relationship I have with my body.

Does having epilepsy increase the barriers to the outdoors?

A very unfortunate consequence of having any condition is that a lot of people want to protect you. They might tell you that you can’t do something, that it’s too dangerous. But that’s not necessarily true. 

Added to that is a big practical barrier. When you don’t drive – be it because of epilepsy, ecological views or economical reasons – it’s difficult to get to national parks or to the beach. You’ll have to rely on public transport, which is difficult when you lack money, have to carry big equipment or reach remote locations. It can be a real logistical nightmare. I often rely on my friends who do have cars. But what if you don’t have that network?

So, while the outdoors are being promoted as “free for all”, you often have to be of a certain privilege to really gain access.

Indeed. You need the kit, the knowledge, the logistics and the welcoming feeling that you belong. When I started looking for stories for Seize Your adventure, I finally noticed how white, middle-class, able bodied, fit and affluent the representation of the outdoor community is. It sounds so naive, but I overlooked that racism and discrimination, which is so prevalent in our society, is also translated into a lack of inclusion and trust within the outdoor community.

You rarely see people with a physical disability on the trail or in advertisements. There are practical barriers, but there’s also a lack of effort to try and make places more accessible. An example: the Lake District wanted to increase paved paths in the national park so it became more accessible. The announcement caused a big controversy because it would also change the personal experience of others who are currently enjoying the park. The people who feel like they belong to the outdoors, wish to keep it how they like it. But no-one has the right to act as a gatekeeper to the outdoors. The outdoors will have to literally change to become more accessible. That’s a fact.