Making fear into a friend

...and giving your head a rest

When I think back on all the fears I have had in my life, I can see the grain of possibility in each one. The real worry was that the shaky control over my decisions might evaporate and leave mayhem in its wake.

I worried about knocking my teeth out drunk.

I worried about crashing my car into a central reservation while driving.

I worried about shouting ‘fuuuuck!’ at the altar on my wedding day in front of everyone I knew.

These were the worst, most dreaded thoughts my supposedly wild imagination could dream up to keep me awake, sweating, in the dark nights, and yet, when real fear came along it swallowed them up. There’s a dullness to all the fears in hindsight.

I once gingerly asked my neurologist, unable to keep the wobble from my voice: ‘When it feels like I am dying, am I really dying?’

The question that had been bothering me for over 15 years was finally hanging in the air.

He paused, put down his pen and swallowed awkwardly.

‘No,’ he told me. ‘You’re not dying. Your brain just thinks you are.’

I nodded, unable to speak.

I deeply feared dying during a seizure. As an epileptic, it felt eminently possible. It still does, when I have them.

I worried about being discovered dead in bed by my family. If my kaleidoscope of thoughts caused my brain to short-circuit my heart and killed me, someone would be left to find me.

When I stay away from home, every single night that I am away the thought crosses my mind: what if you have a seizure here, Alice? What if tonight is the big one?

I was 20, maybe 21, when I was diagnosed with epilepsy by a softly spoken neurologist in a grey room in a Leeds hospital.

I’d been backpacking and the antimalarials gave me night time seizures so strange I couldn’t tell if I was awake or asleep, real or imaginary, here or not. I thought the sand blowing through the desert reeds outside the window of my room in Jaisalmer, Rajasthan, was the sea.

I was having seizures constantly; in the night, when I dozed off on trains, once when I looked into my sister’s eyes in a café in Darjeeling and they were reflecting a light behind me. Seizures while looking at whirring kid’s electric toys being sold on streetside stalls. Seizures while idly watching a ceiling fan. It didn’t take much to start a seizure for me then, and sometimes anything that altered my conscious state could cause one.

Listening to music.

Reading.

I was petrified throughout my time backpacking. I met a cool Israeli couple who smoked weed all the time and told me not to take the antimalarials but instead to wear strong mosquito repellent to stop the risk.

Back at university I read a magazine problem page letter that described my symptoms. The agony aunt suggested it could be temporal lobe epilepsy. As a kid I’d had other seizures but it looked as though I had grown out of them.

I didn’t realise back then that my coping mechanisms were actually the cause of my anxiety, and if I’d have given my brain a rest from all this worrying every now and again I might not have seizures all the time.

The neurologist in Leeds eventually calmly confirmed that, as the shrewd agony aunt from Woman magazine had rightly suggested, it was indeed temporal lobe epilepsy.

There was an MRI. There was an EEG. There was anti-seizure medication that heightened my intense anxiety but gave me exceptional focus, giving me the best university results I’d had so far. Further down the years, there was a sleep clinic, wires glued all over my head, heart monitors and further MRIs where I could choose my own music to drown out the metallic clanking of the machine (like any self-respecting noughties hun I chose the Sugababes’ Taller in More Ways).

The medical advice was grim but practical. I had to keep the door open when I had a bath in case I had a seizure and slipped into the water. I had to cross the road at pedestrian crossings in case I just froze.

Anxiety was an extra duvet I pulled over my head every night.

Maybe tonight is the night you have a seizure and die in your bed, I’d think to myself every evening as I settled down to sleep.

And every time one of those seizures did happen, I had to stop driving for a year, and go back to bathing with the bathroom door unlocked.

I thought each seizure was the final time. This is it. You’re dying. I imagined digging myself into soil so nobody would have to find me in my bed. I inhale the vivid smell of damp cellars when I have seizures. Think about wet earth filling my mouth and nose as I wait for death to come. I imagined my brain would finally pop like a lightbulb and that would be me gone. Floating.   

Then I’d be back in the room. On my own, usually, gasping for breath, my heart racing, drenched in sweat. Relief.

I was tired, my memory shot. I ached for days. And more than that, I was always incredibly afraid afterwards. Each one felt worse than the one before.

I was struggling by the time I actually got some proper therapy for my fear. On a work course about how to deliver presentations, the course leader made us stand up and declare what our deepest fear was about public speaking. I held back tears but I was honest.

‘What if I had a seizure in front of you all?’

What if I wet myself?

What if I passed out?

CBT helped, but essentially the therapy was about acceptance.

Basically, there’s nothing you can do because you actually might die, but if that happens, you’ll be dead, so who cares?

When I asked that neurologist about whether I might die, he might have been feeding me a comforting lie.

‘No. You’re not dying. Your brain just thinks you are.’

I breathed out for the first time in years.

My darkest fear was in the daylight and it was a tiny black cloud that shrank in the light.

The lie, if indeed it was a lie, felt truly comforting.

My fear, which had been grabbing me and twisting me into a hunched form, began to lessen.

Fear, my constant companion, began to leave me. For a couple of days or so at first, but then for weeks and weeks, until I realised it had been months.

Recently I was fortunate to take part in a brilliant workshop led by Dr Rachel Knightley, called ‘What if Your Fear Is Your Superpower?’, at the Ghost Stories Festival in Derby.

In a fit of synchronicity that even Julia Cameron couldn’t have bettered, I was able to attend at short notice, and I was gripped.

My fear – my superpower? Was my epilepsy, or indeed, my fear of dying from it, actually a superpower? Was there creativity to be had there?

We had to write down our deepest fear, fold it and pass it onto the next table for somebody else to write about it.

I felt vulnerable as I scribbled down ‘dying of a seizure’, and sorry for the poor sod who had to write about it.

The folded piece of paper I was handed had a fear that meant nothing to me. In fact, it was hard not to feel it was quite a mundane fear. All the better to be digested and processed.

I was, underneath, worried about missing out on my own life.  

I left the room with a fistful of notes and a head full of ideas about where to go next. Weaving my fears back into my life leaves space for something creative.

For something truly marvellous.