garden state

When I woke up this morning, I didn’t know where I was. I didn’t know what day it was and I couldn’t remember where I was supposed to be.

No, it wasn’t the world’s worst hangover — although it felt like it. It was postictal state. Which is a fancy way of saying post-seizure confusion. As I lay in bed with my entire body aching, slow chunks of my memory started to come back to me: my name, that I was in my own bedroom, the day of week. And that I had to get my ass up and get to work.

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Much like one of the world’s worst hangovers, after a seizure, remembering all the details of the night before can be difficult. Unlike a hangover, I don’t need to madly ring round my friends in a paranoid state to make sure I didn’t screw up my entire life last night. Nor do I need to immediately check Facebook for tags in wildly inappropriate photos, or check my phone messages for dodgy conversations with ex-boyfriends. Like the dreaded drunken flashbacks, the majority of my memory will come back to me throughout the morning.

I have a specific type of epilepsy called Juvenile Myoclonic Epilepsy. I mainly get three types of seizures: tonic-clonic, absences and myoclonic jerks. Tonic-clonic seizures are the "classic" seizure you’ve no doubt seen portrayed in the media. Thankfully my seizures are nowhere near as visually dramatic as TV would have you believe.

Tonic-clonics only occur when I’m about to go to sleep, sleeping, or just waking up. My body will tonic (seize up) then clonic (shake/jerk). It can last anywhere from 5 to 30 seconds. I’m sure it’s not fun to watch, but I’ve been assured by (probably petrified) boyfriends that it looks nothing like their previous perception of a tonic-clonic seizure.
Sometimes I know I’m about to have a seizure. I experience an "aura," which feels slightly different to each person. For me, it feels like a lot of tension in my body and slight confusion. I mean, I’m generally always slightly confused at life in general, but just slightly more so pre-seizure.

Post-seizure is the real shitty bit about epilepsy. Many times upon waking I’m unsure if I’ve had a seizure or had the sort of mad night out my 31-year-old body can no longer gracefully cope with. You know, the type of hangover that mainly involves numbing your mind with terrible American sitcoms, ordering emergency Domino’s pizza and the occasional crying bout.

The postictal headache I can only compare to the headache I had after drinking approximately half a bottle of tequila at a Christmas work do. A work do that was only ever referred to again as "that party" in hushed tones in dark corridors at work.
The headache wears off after a couple of hours, but it’s not a pleasant few hours. Like many other people who have frequent seizures, I still have to go work and I’ve had to get used to going to work under the fog of confusion. To the average passerby and fellow commuter, I probably look like I’m still half-cut from the night before. Simple questions are extremely difficult to answer and every noise is amplified to a level in which earplugs should legally be worn for health and safety reasons.

Myoclonic jerks are essentially an involuntary movement of my arms and legs. For example, without warning, my arm will suddenly decide that it’s bored of being where it is and move suddenly to another location. This, of course, has resulted in me breaking many, many things. Plastic glasses for the win. I have also thrown many things and kicked many people. I am not the ideal employee in a restaurant.

Absences mainly involve me staring into space for a short period of time. To onlookers, I’m daydreamingm but a lot of the time my sight has actually gone blurry or I’m seeing a flash of light. Again, not particularly fun.

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I talk about epilepsy, or specifically my experiences with epilepsy, in a light-hearted manner because that’s the way I cope with it, and life in general. However, I know many people for whom their epilepsy, or their loved one’s epilepsy, is debilitating, and there’s very little humour to be found in that.

The very unfunny side of my type of epilepsy is that I have an increased risk of Sudden Unexpected Death in Epilepsy (SUDEP). Because my seizures occur when I’m sleeping and occur frequently, I’m more likely to die because of a seizure. In fact, every death from epilepsy that I’ve ever heard of has occurred during a sleeping tonic clonic.
So although I joke about epilepsy and regularly make fun of myself, underneath all of it, I’m extremely scared of my seizures. It’s a very frightening condition to have, and with the NHS waiting list for neurological appointments being over 1.5 years delayed, it can feel very lonely and frustrating.

I thankfully have a very lovely epilepsy nurse who works her ass off to look after her patients, and a very caring neurologist, who I can text and even, in a very modern way, WhatsApp in an emergency.

Unlike a hangover, I have no control over when I’m going to go through the postictal morning after. I can’t plan for it in advance like I do a hangover: stocking up on crisps and fizzy drinks, and ensuring I have nothing planned that involves any human interaction. I have to get my ass up and get on with my day, regardless of how truly shitty I feel because that’s life with epilepsy: a little of feeling shitty, a little of feeling scared, and a lot of feeling hungover.

Top photo: Natalie Portman's character in Garden State has epilepsy

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Elcie Burrows is from Northern Ireland and is a writer, social justice campaigner and freelance events coordinator for charities and non-profit organisations.  Elcie can be contacted at elcieburrows@gmail.com.

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