John Alex Taylor

From Apples in the Dark…

A voice. ‘Shit, I haven’t done first aid in years. You’ll be

okay. Please? Please, God?’

You? Me? WHO AM I?

…? A pulse of rootless terror.

Where? WHERE IS THIS?

…? Another pulse.

When? AM I GROWN-UP?

…? And another.

 

Rachel is regaining consciousness after a prolonged epileptic seizure – one of my own seizures. I wrote the earliest version of this description, those three disorienting shocks, long before I began writing fiction. It was for a training session at work on epilepsy. I worked with people with learning disabilities, many of whom had epilepsy, but I was the only staff member who had experienced seizures, and I wanted my colleagues to understand how it felt to completely lose your bearings, and for a few terrifying moments, your identity. The importance of someone calmly filling those gaps. Name. Place. Context.

By the time I wrote that first description, I had been free from seizures for about five years, and it was scary to write, as if I might bring on a seizure by recording my fractured memories. Now, over thirty years later, I’m still free from seizures, but it is still emotionally draining to write about.

The first time I approached the experience in fiction was as one of many strands in a novel that gained me an enthusiastic agent and the interest of several editors in 2012. It never reached publication, and with nothing comparable to offer at the time, I parted company with the agent. But I still wanted to share those experiences.

I looked again at that novel and was confused by what I found. Yes, the descriptions of seizures are there, and the fear, in amongst so many other threads of story that the impact doesn’t extend beyond the scenes where they happen. And the secondary effects of epilepsy are hardly there at all. It’s as if epilepsy is simply a problem in need of a solution.

This wasn’t how it had felt to live with epilepsy for those few years in my late teens and early twenties when I had prolonged daytimes seizures as well as the nighttime seizures I’d had since I was thirteen. And when the effects of heavy medication sent me into cycles of depression, and once, when withdrawal symptoms from a prescription drug gave me a nervous breakdown. If I was to approach the situation honestly in fiction, another, deeper story would be needed. And some emotional props to make the writing bearable.

And the more I looked into my own memories, the more I found. In fictionalising my epilepsy for a character who definitely wasn’t me – different gender, different career, far more musical, far more intelligent (this is fiction, after all!) – all those secondary effects of epilepsy came into focus. Some of the life decisions I had made without thought began to make sense. And more memories came back, memories I had protected myself from. Of never making deep relationships for fear of rejection. Of existential fear that kept me awake at night. Of clinging on to consciousness every time I felt the world beginning to turn without me.

Rachel isn’t me, but she lives with those fears, constantly. And it takes emotional allies to dig her out of that cycle of self-protection. To get her involved in other people’s lives. She finds she can share her own real gifts.

I took that journey in a rather different way, testing out friendships, and discovering that people weren’t repelled by my company. And discovering that I had a natural empathy with people who had multiple disabilities. I found a profession I could commit to. Strangely, it was years before I made the connection between my career path and my own experience of epilepsy. And it has taken a good many more years for me to put those experiences into fiction.

I’ll save writing about the emotional props I needed to help me dig into these experiences for another time. Only they’re not props, they’re people.

2 Responses

  1. In 1965, one lunchtime in the college common room, a girl from another class (i.e. we hardly knew her) fell to the floor. Aware of our ignorance we quite quickly diagnosed ‘probable’ epilepsy, put her in the recovery position, discussed the need for something to prevent her biting her tongue and went to ask the office to call for professional help. A few days later she thanked us but didn’t say much more. Your account of your experiences will save many from such ignorance and possibly lead to quicker assistance. Look forward to reading.

    1. Thank you, Sandra. That is my hope. There are some sensational and not very accurate portrayals of epilepsy in fiction, and I want to give people the opportunity to see what it feels like fromm the inside. Not just the symptoms, but the psychological effects.

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