Living with epilepsy: “I would fu*king love to see myself fit”
(approx eight minute read)
X shares what it’s been like living with his ‘alien’ for four decades and the impact of having a condition that he’s never seen before.
Image by freepik
What does a seizure feel like?
It’s not the seizure that impacts me, I don’t remember a thing.
Sometimes I’ll only realise I’ve had a fit when I touch my face and have a cut lip, blood pouring down my face or a tooth has been knocked out.
If I’m on my own in my flat I’ll often spend the remainder of the day resting because a seizure takes a huge amount out of you.
Fitting on your own, while it can be dangerous, isn’t the worst thing in the world.
The worst bit is fitting in public and coming round to see the impact it’s had on others.
It’s a big thing for someone to see. I’m told I bite my tongue. I’m told sometimes I go blue. That’s really frightening for someone.
But I’ve never seen it. Four decades of epilepsy and I’ve never seen it.
How fucked up is that. I want to see it. I deserve to be able to see it. I would love to be filmed fitting. To see my alien taking over.
That’s what I call my epilepsy. My alien.
I’ve had epilepsy for more than 40 years and if I’m being truthful, it’s only the last couple of weeks where I’ve properly accepted that I’m epileptic.
That is why I want to share my story.
I had my first fit when I was 17.
I’d been to a party in London. A late night of drinking. No bed to sleep in. I think I slept in the bathroom that night.
Then out of nowhere, a fit.
There had been no warning signs, I just fitted.
The next thing I remember was being back home. I lived a three hour train journey from London at the time. I don’t remember a thing about getting back.
Epilepsy symptoms
What would become clear as I started to live with my epilepsy is that after seizures I’d be a homing pigeon. If I fitted in an unfamiliar place I’d wake up and head home on autopilot.
As this was the first time, none of my friends knew that’s what happened. My mate had to phone my parents and say they’d lost me.
You can imagine their worry.
A few days later I had an A-level exam. It was a multiple choice paper. I couldn’t answer a single question, my brain had stopped working. That’s alarming at 17 years old.
In the days after the seizure, and having been given the diagnosis, it was almost brushed under the carpet because they didn’t think it was that severe.
I was given some medication and sent on my way.
There was never a suggestion of going to see someone to talk about it. Which is mad..
I’ve wondered over the years ‘why then?’. Why at 17 did I suddenly become epileptic?
The only trigger it could have been, although there’s no way of proving this, is my mum unexpectedly died from a heart attack at 36 when I was 16.
That’s a pretty big thing, right.
Since then I’ve probably had a fit every 18 months, although they’re becoming more frequent now (more on this later).
When I was 23 I broke my jaw during a fit and couldn’t eat solids for a couple of months.
There’s also been countless times where I’ve woken up in hospital after a fit.
Image by freepik
The problem was my homing pigeon often kicked in and I’d leave the hospital without telling anyone or being properly discharged.
My X wife has had phone calls from police over the years as I’ve been classed as a missing person. The police have also turned up to my flat to check on me.
I didn’t let epilepsy stop me doing things growing up - I didn’t want it to define me.
The medication, although it was really strong, meant it was reasonably under control so I travelled the world for five years seeing amazing things and meeting amazing people.
In my 30s I decided for the first time to explore, emotionally, my epilepsy.
I went to a local group with other epileptics but felt like I was surrounded by victims. It didn’t sit right with me. It was so negative. So depressing. I got out of there as fast as I could.
Over the last few years my seizures have become more regular.
My last seizure, for example, was three weeks ago.
(Seek advice and support at Epilepsy Action)
Cognitive effects of epilepsy
Now is probably the best time since then to talk to me. It can take weeks to be able to put flowing sentences together again. Cognitively the impact is pretty big. It kills my brain cells and shakes me up.
I’ve started to feel guilty about my seizures. Why? Because it’s something I can sort of control.
(read an anonymous life story on health anxiety)
Image by freepik
Triggers for seizures in epilepsy
I’ve not looked after myself as well as I could. Drinking too much. Not enough sleep. General life stress. Mix those things together and I’m much more likely to have a seizure.
When I think about it, that’s quite a lot of self-harm.
For a few years I gave up drinking because that’s what I was told to do. But as I got older I decided I didn’t want to be teetotal. Having a few drinks with my friends was important to me.
I’m a bit of a risk taker. The problem is over the last few years that’s probably veered into too much risk.
And when that risk turns into seizures people start to look at you in a different way. It freaks them out.
But I don’t want to be the guy that people talk about in the bar. I want them to make a judgement on me, not my alien.
Also, I’ve got two kids. They don’t deserve the worry and I don’t want it to have a detrimental impact on their world.
How epilepsy affects mental health
It’s not uncommon for people to suffer with sadness and depression when you have epilepsy. It sounds odd but I’ve only just recognised that my alien actually affects my emotions. I’d never put the two together. It’s like I’d separated the epilepsy from myself.
All this ‘stuff’ has led to a lot of soul searching recently. And I guess an acceptance that I’m epileptic.
How has epilepsy defined me? Well, it has enabled me to see every human being as individual, unique. It’s made me more empathetic. I’m also fascinated by people's stories - perhaps that’s why I’ve been a coach for 30 years - because there’s a huge story in my life that I’ve never read.
That’s why, as I look forward to the next stage of my life, I want to keep exploring my epileptic story, my alien.
Coaching people with epilepsy
And I want to combine my coaching skills and epilepsy to help make a difference to those that are living with the condition.