I had my first seizure at 17. As if foaming at the mouth and wetting myself wasn’t embarrassing enough, it happened in my sixth-form common room. Crushes, mean bullies and friends watched me collapse on to the floor, shaking.
My parents rushed to the school from work and an ambulance arrived quickly, but I had no idea what the big fuss was about. I hadn’t consciously been there; I hadn’t felt the tightening of the muscles and the lack of oxygen to my brain. All I remembered was feeling stuck in my body and the sound of my twin sister shouting as I hit the ground.
When I came around I had a suspicious wet patch on my bum and I was chatting to my sister and my friends, who were sitting on the floor with me. But my speech was slurred, my balance lost and I couldn’t remember a thing I’d said or done in the past 30 minutes. One teacher had the audacity to ask my sister if I had been drinking.
Just as I was on the brink of adulthood, the promise of it all came crumbling down
It’s disconcerting to lose that many minutes of your life. But the reality hadn’t set in yet. I got a day off school and was left with a headache, hundreds of get-well-soon messages from people I’d met once, and takeaway pizza for dinner – a dream day for me.
It was only once the tests started getting booked – an EEG, an MRI and an ECG – that things got serious. The next month I had a seizure in my sleep. The next month another, and another one the month after that.
Just as I was on the brink of adulthood, the promise of it all came crumbling down. My seizures had become the strict mother I never had growing up. I couldn’t drive until I went without one for a year. I couldn’t drink too much alcohol because it reduced the effects of my medication. And I couldn’t stay up too late because a lack of sleep could lead to a seizure. Four years on, my car, a classic Mini City E that my dad and I had spent several years renovating, is still sitting in the garage waiting to be driven.
Almost a year after my first seizure, I finally got a diagnosis. My sister had filmed me having a seizure (ironically brought on by the stress of her leaving for university the next day) so the doctors could confirm what was going on. And then the doctor told me: I had epilepsy. Within the space of a minute, I had a disability.
The fits I’d been having were tonic-clonic seizures. In the tonic stage, I lose consciousness and fall on to the floor. Then, in the clonic stage, my body shakes and my limbs jerk about. After the seizures, I go into a postictal state – when the brain has recovered from the seizure but isn’t quite back to normal yet – which is why I seem drunk and I can’t remember anything.
Pieces of the puzzle started coming together. It was not genetic – thank God, because my sister had become my unofficial taxi driver. It was brought on by stress (my impending exams and the nasty breakup of a friendship at the time). The same area of the brain that deals with stress is also responsible for seizures, so when stress hormones are released this can lead to seizures.
I am not going to say I don’t get down about it. The day after a seizure is usually spent moping about with a head-splitting migraine, trying to recreate my dad’s comfort chocolate pudding while crying. And the thought of having another seizure fills me with dread. I’m certainly not living the young adult life 14-year-old me dreamed about (although driving around Europe with Niall Horan seemed like a stretch anyway).
But I do feel incredibly lucky. I have amazing friends and a wonderful family who will sleep on my bedroom floor until they know I am safe and follow me around the house to make sure I don’t fall down the stairs during the postictal state.
I’ve also learned that if a conversation is boring me, I can tell whoever I’m talking to that I have epilepsy, which instantly makes things more interesting for me and 100% more awkward for them. Having a seizure at a tote bag painting session is also a great way to strengthen a friendship. And while I might lose bladder control in my friend Megan’s bed again, I know she will be just as nice about it as she always has been.
What could have been the albatross around my neck dragging me down is instead my favourite party joke. My excuse to come home from a club early. And an easy way to get sympathy on a bad day. This wicked twist of fate has taught me not to take myself too seriously and to stop stress from dictating my life. Most importantly, I have seen how the people who love me will do anything they can to help. I wouldn’t have been able to make it through without them.