This post is part of the Epilepsy Blog Relay™. Follow along!
Francesca Turauskis is founder and editor of Seize Your Adventure. She is also an inspirational speaker. Fran has taken a moment out of her busy schedule to share her epilepsy story during the Epilepsy Blog Relay.
My first seizure happened more than 7 years ago, when I was 22 and in my last year of university, but it is only recently that I have discovered and become part of ‘the epilepsy community’. That first seizure was so confusing (not least because of the 30 minutes of post-ictal blankness). I had no history of epilepsy in the family but I did have episodes of syncope (fainting) in my teens, so the neurologist decided that this was a faint. But I remember the aching muscles after the episode, and the rush of noise in my ears. The diagnosis of fainting didn’t feel right.
A year later was the second ‘one-off’. This time, I gave my boyfriend the “most effective wake-up call, ever” when I had a seizure in my sleep. I had gone to sleep without a top on and woken up with some wires attached to my naked chest (and they say epilepsy isn’t sexy…) and a mask was over my face. If I was more of a morning person, this would probably be the point I freaked out, but instead I let my boyfriend maneuver me into clothes and into the ambulance.
This neurologist agreed it was a seizure – but so far away from the first one, a seizure not worthy of the name epilepsy, yet.
An epilepsy diagnosis
It was around this time that I was working with children with special needs, some of whom had epilepsy. I underwent epilepsy training, was witness to many tonic-clonics and absences, and was able to get an idea from the other side. Despite this training, I didn’t recognize when I started getting auras and partial seizures a few months later.
Looking back, I know that I was ignoring something I shouldn’t. I was starting to hear voices – which should have told me there was wrong with my head. External sounds would be muted, and I strained to make sense as lots of disembodied talking whispered to me at once. I would pause, and it would pass. This happened a couple of times, until one day at work I heard these whispers, and then I lost time. I was in the staff room, and then I was on the other end of the building. I felt sick. My head hurt. I could barely focus and barely made it home on the bus. Later that evening, I found a plate from the staff kitchen in my bag – apparently my seizing brain thought that was where it belonged!
I think it was that evening my boyfriend saw me have another one. To be honest, they begin to blur. But at least the cluster of them meant the neurologists could confirm it: I have epilepsy. Tests ensued – the electrodes glued to my scalp, the CT scan, the light sensitivity, the sleep deprivation. All to give me the really useful diagnosis of ‘low seizure threshold’ with no noticeable trigger.
Ironically, it was from the moment they told me I could say “I have epilepsy” that I began to feel more disconnected from the phrase. I started taking a medication, which controls my seizures and allows me to live a mostly-independent life. So when I was hitting a rut in my work life, there didn’t seem to be anything stopping me from going on an adventure. I decided to walk 500 miles of the Camino de Santiago in Spain, by myself. It was hard at times, and I ached all over! But it was no worse than it feels after a seizure – we all know one can drain you for days.
But epilepsy meant that I could not be as complacent and off-grid as I would have liked. I had the extra worry of getting enough medication to last the full length of my trip. Even without the seizures, the price of travel insurance was increased. I have to inform flight attendants whenever I get on a plane by myself and I had a little tag on my bag shouting “I have epilepsy” (the Spanish is tengo epilepsia) to anyone who is observant enough.
An Advocate for Awareness – and Adventure
As I walked, I talked to as many people as I could about my epilepsy – people from Spain, Portugal, US, UK, Germany, Peru, Argentina – most of whom knew little about the condition. Everyone had questions, the most common one being, “what do I do if you have a seizure?!“. Fear for me (of me?) was the expression I saw in most people and I saw that lack of awareness was a universal problem. When I returned home to no job, I wrote about my story and I found myself contacted by people with and without epilepsy. Some had taken on similar challenges, and some had never considered that adventure could be possible for someone like them. Through my adventure, I suddenly found that I was connecting with the epilepsy community and becoming an advocate for awareness at the same time.
Related article: Clair and Riley share tips on epilepsy first aid
In Spring 2018, I launched Seize Your Adventure, a unique platform that showcases positive stories of people with epilepsy defying expectations. The website has three aims: to share adventure stories from people who don’t let epilepsy map their lives; to encourage others to explore their own limits; and to spread awareness for epilepsy in all its guises. I’m enjoying collating the mixture of creative non-fiction, interviews and articles, photography and videos, and connecting the epilepsy and adventure communities. The path to my diagnosis was very hard. But my path going forward is making itself clearer, with crowdfunding imminent and collaborations to look forward to.
If you have epilepsy and are into adventures, please get in touch to tell me about it!