‘My Adolescence was Dictated by Epilepsy’: Looking Back at My Illness and Learning to Face My Fears as an Adult
By Hope O'Rourke
The first time I had a seizure I was around seven. I only have vague memories of it: the murals painted on the walls of the children’s hospital, watching The Simpsons whilst having an MRI. Back then my seizures and absences only lasted for about six months, and I was discharged with Benign Rolandic Epilepsy of childhood.
Almost ten years later, I had another seizure. I remember waking up and feeling paralysed from the neck down but not realising what was going on when it was over. I got up and went to school. A couple of weeks later, I had more seizures, which I dismissed again. It wasn’t until my mum found me having a seizure in the hallway that things changed. Four trips to A&E and eight more seizures later, we finally put the pieces together. I ended up in hospital and going into Status Epilepticus, which sounds fictitious but is actually quite serious.
This all happened when I was fifteen, so my adolescence was somewhat dictated by epilepsy. This is not to say that I would have spent my late teenage years out at house parties (or parks) indulging in underage drinking with friends; my personality and social status at school didn't align with that aesthetic, believe me. But the option was taken away. I knew very early on that if I wanted to maintain my seizure-free controlled epilepsy, I would have to adhere to particular lifestyle choices that may not be exactly exciting.
It’s a precautionary choice that I make to minimise risks to my health. SUDEP (Sudden Death in Epilepsy) is something that I’m honestly scared of, and although it’s not extremely common it’s something that I can prevent by taking my medication and not drinking. It definitely didn’t make me popular when I got to university. Even now, it’s hard having to justify to people the reasons why I don’t drink. It’s not anyone’s business but that doesn’t stop them from prying. My medication doesn’t recommend drinking, to which someone will always pipe up and say, ‘I know someone who knows someone who is epileptic and drinks.’ That’s great, thanks for your unnecessary input, but funnily enough we’re not all the same.
My triggers are said to be stress and over-tiredness, which is ironic because seizures are nocturnal. I used to think that my brain was weak for having these triggers; they are something that people deal with daily and yet my brain wasn't strong enough to handle the pressure. But I’ve defied these triggers, attending university (though it put me under immense stress that I dealt with by completing assignments past midnight, which left me with a sleep schedule that was not ideal).
Talking to my housemates through the basics of epilepsy first-aid is something I’ve become accustomed to over the past five years. I’m often bombarded by the same set of questions with each new set of housemates, having to explain the worst-case scenario situations whilst maintaining a level of patience that I haven’t got. ‘No, I won’t have a seizure from flashing lights, that’s photosensitive epilepsy. Mine’s not like that.’ And let me tell you, teaching a new boyfriend epilepsy first-aid is the furthest thing from sexy.
Sometimes I forget how far I’ve come. Despite now being able to talk more openly about my epilepsy, when I was originally given the diagnosis, I was embarrassed. In hindsight, this was due to the common misconceptions that people have about epilepsy. I’m always worried that people would just assume that if I were to have a seizure, I would lose control of my bladder and they would then make fun of that. I’ve never had a lot of faith in people and this diagnosis forced me to build my walls even higher to protect myself.
I haven't had a seizure in over 2,960 days. Sometimes I ask myself what gives me the right to talk so openly about having this long-term condition when I am not impacted by it every day. It’s something that has taken a while for me to figure out my answer to. There are some days when I feel guilty for claiming to be an ‘epilepsy warrior’, as if I’m claiming a title that shouldn’t belong to me. I’m fine. I haven’t had a seizure in seven years. My medication works. I’m not suffering like so many others. I feel guilty because of all these things.
But I do take medication twice a day. I take extra caution to manage my sleep, which isn’t easy as an insomniac. I experience headaches pretty much every day and regular cluster headaches that are so painful I feel my eyes burn. I make conscious life choices to maintain my health. There are still times when I worry that I’ve missed out because my adolescence and university experience wasn’t like my peers, and in the past I’ve resented my epilepsy and wondered how different things would have been if I didn’t have it.
However, I then remind myself that this year alone I have travelled four times on my own. Twice I was solo travelling, wandering the streets of Italy with a shit ton of travel insurance, just in case, and stashing my medication in my pockets rather than my luggage for the duration of the flight in case I ever end up in a LOST situation.
I’ve often wondered over the past year or so if it’s possible that it is in fact my fears that are holding me back, rather than my epilepsy. I’m not sure if this is something that I’m coming to understand with maturity or if it’s just that I’ve got sick of justifying the way I live my life to people. But I’m trying so hard at the moment to not let my epilepsy hold me back.
Hope (she/her) has had a passion for writing and literature from a young age. She undertook creative writing modules whilst studying Literature at university and has continued to find creative pursuits since graduating. Hope typically reflects on her personal experiences to influence her writing.