Outside Frans’ Way

Reading time - 6 minutes

Francesca Turauskis (she/her) is a freelance Podcast Producer and writer for Pod Bible magazine. She enjoys the outdoors through hiking and trail running. In 2015 Fran was diagnosed with epilepsy and has since been an advocate for doing outdoor sport with epilepsy. A big part of this work has been through her podcast Seize Your Adventure where she goes into a lot of detail about her own story and hiking the Camino de Santiago, and also interviews other adventure folk with epilepsy.

Epilepsy has many different ways of presenting itself. It’s a broad spectrum in terms of the type of seizures people have, which means that everyone’s experience of the condition is very different. Some people might lose consciousness but not convulse, others may convulse but not lose consciousness. There is such a wide range of symptoms that people go through, and therefore a variety of ways that people are able access the outdoors, including how much or how little support they need. In the UK 1 in 100 people will have an epilepsy diagnosis at some point in their life.

Fran has the type of seizure most people will imagine when they think of epilepsy. She has what’s called tonic clonic’ seizures where she would lose consciousness, fall, and convulse. But she also had a few partial seizures which would be losing consciousness but not falling down; “just kind of having a blank stare kind of thing. For me I actually had hallucinations and they were auditory.”

In 2011 while in her last year at university Fran had her first seizure. Just 22 years old, she was sat with friends in her kitchen about to make dinner, when she had a sudden rush of voices in her head, - she described it as lots of people speaking to her at once. Her vision went white and then she lost consciousness. “The next thing that I remember is sitting on my sofa in my living room, and a paramedic asking me these questions. I distinctly remember thinking to myself, ‘“why is the paramedic here, is someone ill’?” And then I realised after a while that I was answering his questions and it was me that that he was there to see.” Although she was seen in hospital that day and had tests done, she was reassured that a few people have one off seizures and they won’t have one ever again. Fast forward a year later and Fran had another seizure, this time in her sleep. Her boyfriend said “it’s the best alarm clock he could ever have.” But once again there was no diagnosis of epilepsy until another year an half when Fran experience four or five seizure within 48 hours of each other.

Once she received the diagnosis she was put on anticonvulsants and since then *touch wood* she hasn’t had any noticeable seizures. But since being diagnosed Fran has felt a disconnect from the condition as she no longer has seizures. It’s been a strange process in feeling any identity with the condition or perhaps even any community. When I asked Fran if she considers herself to disabled or chronically ill she said no. “But Epilepsy is a condition that doesn't have a cure as such, and it is something which once you've been diagnosed with it, it's always there and it's always kind of something that you have to be aware of. So I still have to say that I have epilepsy and that’s something I have to live with.”

Fran never felt too anxious about her new diagnosis and in the first couple of years afterwards started taking on some big adventures. The one that sparked her advocacy for epilepsy in the outdoor space was walking the Camino de Santiago in Spain. The hike is around 500 miles and has been listed as a UNESCO World Heritage for its “important role in encouraging cultural exchanges between people from all over Europe and the world for many centuries.”. She did it solo in five or six weeks, but although she went there solo, most days there were people around.

‘So you're always meeting people, and you're quite often meeting the same people over and over in different places. So I spoke to them about my epilepsy. One of the things I always do try and do is tell people about it just in case, so that they're not caught off guard if anything happens. And I was very surprised by how much it surprised people that I was doing a hike solo!”

Most people, if not everyone, were asking Fran questions about the condition, asking if she was allowed to do this by herself. Some people were actively worried about her until she reassured them and explained more about it. Because of the lack of awareness of the condition this sparked Fran to want to speak more about it and make other people more confident to do things.

One thing that Fran said could be a barrier was declaring the condition to event organisers. Although she’s quite a bit of experience at running, and hasn’t had a seizure in years; she can never be sure if she will have another. The chances are always there, particularly if she’s doing new activities or challenges which are physically pushing her. So she always warns event organisers and will wear a bib with her emergency medical information on.

In her experience some organisers have been great, but others have been “a little bit jumpy”. She even had one race tell her they were uncomfortable with her taking part. They suggested she should do it with someone else rather than solo, which isn’t a necessary precaution for Fran. She was confident enough to explain her own situation so she could take part by herself anyway, but others with epilepsy are deterred from taking part in sports and events because of this type of reaction. The stigma surrounding the condition and the lack of understanding of epilepsy makes people imagine the worst possible outcome of Fran losing consciousness and convulsing.

That lack of understanding has lead to a fear and stigma surrounding epilepsy in society and in organised races. This stigma can end up leading those with epilepsy to not declare their conditions for fear of being excluded unnecessarily.

Some simple communication could really help remove that stigma in organised races. At the end of the day, the people with epilepsy are the experts in their condition -“We go to doctors quite a lot. We speak to nurses, and we speak to our family, we speak to our friends about it, we speak to other people with the condition. We have a lot of knowledge, and we have a lot of people [around us] that are in a much better position to say whether we can or can't do something than organisers of events.”

Broad questions could be asked: how does it present? When was the last time you had a seizure? Can you tell if the seizure is going to happen? Do you get a warning of it? Is there any thing we can do to support you?

Finally, I asked Fran what advice she would give others with epilepsy who want to go outdoors. She said one of the toughest things to take on board is that you have to acknowledge the condition you have and constantly reassess where your health is. But it doesn’t mean you can’t do the things you want to do.

“It just means that there's going to be very different steps that you have to put in place. So if you had a seizure yesterday you might need that buddy that you go [with], you might need emergency medication, you might need various different things if you are someone with more active epilepsy.”