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Epilepsy and (in my case) fiction

17 March 2021

Are there key moments that can unlock the lifelong impact of epilepsy?

On a winter’s afternoon, more than half a century ago, my brother, sister and I arranged a series of upturned cardboard boxes into hurdles along our hallway carpet. Then we galloped merrily up and down, racehorses at the Grand National – until I flew headlong into the side of the kitchen door. I can still remember my dad’s panic-stricken drive to A&E, the overpowering smell of antiseptic and the sharp, plucking sensation when they removed the stitches two weeks later.

The epileptic fits bided their time. Wilder Penfield, a Canadian neurosurgeon with a poetic streak, calls this ‘a silent period of strange ripening’, during which the brain, after trauma, makes changes to its neural networks. I was fifteen or sixteen when I first regained consciousness in the early hours of the morning, on the floor of my bedroom in our family home, wondering who these strangers were, kneeling by my side. 

As I lay in bed recovering, it felt as though I’d made a kind of frantic, nightmarish journey during the seizure if only I could remember it. After a while I gave up trying. And quite soon I got on with my life, not wanting to rock the boat – aware of my family’s support, but withdrawing from them, too, ‘playing my cards close to my chest’, as my mum would later describe it.

After a few more years of nocturnal ‘grand mal’ fits, I took a risk and, in the kind of theatrical gesture that you’re allowed to make in your early twenties, I threw my anti-convulsant medication into the sea. Two or three more seizures followed. Then they stopped. But thirty years later, something rather odd happened.

I’d just begun to write a novel, The Story of the Cloth, in which the main character is granted the power of (almost) instantaneous travel. I knew, as I wrote, that though his ‘flights’ would be successful – taking him across the world in seconds – they would also be demanding, both physically and psychologically.

It was only as I was describing his initial, experimental flight to Oman – ‘extreme cold was the first thing he registered, an oncoming wind that wanted to flay the skin off his face; and afterwards a roaring, hurtling motion’ – when I realised, with a bit of a jolt, that instead of plucking ideas from the ether, I was trying once again to uncover the memories of my teenage epileptic seizures.

As I continued to write, I finally began to consider the impact of this early period of epilepsy, wondering how much it had contributed to the state of anxiety that has been a distinct – but not immobilizing – feature of my adult life. (Ask my wife about us setting off on holiday abroad, when I plan not only for the first airport train to be cancelled, but also the second and third, and where we might go instead if all the flights are grounded.)

The process of writing, however, also had something positive to reveal about the teenage seizures. The novel, to cut a long narrative short, is about hope (the struggle for an ancient cloth that may become a beacon of tolerance in the world). Where, though, had that hope, a theme that I have carried with me over the years, actually come from?

In the early phase of my adolescence, I had a decidedly negative view of life, taking myself off for long, gloomy walks in the woods. The period of seizures, however, coincided with a gradual change in that perspective, from pessimism to a tentative but durable optimism. But why?

Firstly, most seizures, though they may be terrifying, are short-lived. As you return to normality, a kind of relief follows and a heightened appreciation of the ordinary things in life: a gnarly tree on an afternoon walk, or my wife when she tells me to stop 'mithering'. 

Secondly, epileptic fits, by their very nature, strike unexpectedly and repeatedly in the midst of routine activity – working, playing or, in my case, sleeping – leaving us powerless over the basic functions of our minds and bodies, reminding us in a very particular way of our vulnerability. We slowly realise, if we didn’t know it before, that the world is an interconnected place, where we depend on our families, friends, and the professional kindness of others. And with that understanding comes a sense of hope.

The novel, anyway, proved prescient. Two years after it was published in 2018, my nocturnal seizures, after a 35-year break, returned not only with a vengeance, but also with an additional refinement which, I have to admit, scares the pants off me: a semi-consciousness that allows me to experience the seizure as it briefly plays out, sometimes even to try and form the words, ‘I’m OK’ to my wife. (And yes, for me it does feel like I'm strapped to the top of a juddering, dilapidated biplane.)

Despite this, I’m still hopeful.