TERRY PRONE: Valentine, not just the patron saint of romance, but also of epilepsy

Although the epileptic may get warnings of an oncoming electrical brainstorm, others don’t get such advance notice, and so, as far as the bystander is concerned, the seizure comes out of nowhere, transforming the person they know into someone they very definitely don’t know.

The recruitment form asked a blunt question: “Do any of the following illnesses run in your family?” Then came a list of possibilities beside boxes in which you could write Yes or No. Diabetes? Yes, I wrote. My grandmother had a drawer full of tiny bottles of insulin to be injected morning and night, plus a tiny weighing scales to measure everything she ate. Asthma? Yes, I wrote. Me and my sister could out-wheeze the average hoover. Psoriasis? Yes. Epilepsy? Yes. When my mother read the filled-out form, you’d think I’d characterised our entire family as a cluster of bunny-boiling Ebola carriers.

Incandescent is an understatement. I was to get a new form immediately and write No in response to every one of those questions. Was that clear? She hoped so. None of their business. The idea. The very idea. For a summer job, they wanted an entire familial health check? The impertinence. They had no right and there was no law and to hell with them.

I already had a few spare forms, so finding one to falsify and submit was no problem. Second time around, I looked a lot safer, as a prospect for even temporary employment, than I had when honestly laying bare the clan’s defective DNA. But it was clear that, while privacy was an issue, what moved the form from an irritation to an outrage was not the listing of most of the conditions. They might be private, but they weren’t SHAMEFUL. My grandmother’s diabetes was just a fascinating part of our family life. It certainly wasn’t a carefully concealed blot on the escutcheon. Psoriasis wasn’t a secret because it’s kind of obvious. Asthma, likewise. But epilepsy? That was never spoken of and it seemed that if it ever was revealed it ran in our family, a) whoever revealed it would experience an ice-pick in the head, courtesy of my mother and b) the entire family would be forced to emigrate.

People were at worst curious about diabetes, at best sympathetic. However, they were frankly prejudiced against epilepsy. It had not always been so. In ancient times, epileptics were regarded as Godlike, their seizures elevating them to admiration, rather than contempt. Hippocrates didn’t buy into this theory, believing that once the cause had been identified, all this Godlike nonsense surrounding the complaint would fall away. Later, the condition got entangled with Christianity and the word went out that when an episode happened, the sufferer had been seized by demons. The prejudice probably derives, in part, from the suddenness of a seizure. Although the epileptic may get warnings of an oncoming electrical brainstorm, others don’t get such advance notice, and so, as far as the bystander is concerned, the seizure comes out of nowhere, transforming the person they know into someone they very definitely don’t know. I remember once, working late in RTÉ, coming along a corridor and finding three men, one of them in a security uniform, dithering outside a men’s toilet. I asked what was going on. They said a male staffer was in the bathroom having a seizure. They didn’t say they were scared to go near him. They didn’t need to. Big men who could confidently cope with the deranged or drunk without hesitation were flummoxed by a seizure, the only threat implicit within which was the possibility that the sufferer might bang his head off the hard tiles in the bathroom.

But even the sudden onset of a seizure cannot explain the ambient prejudice that led families like mine to conceal the fact that epilepsy was like a haphazard Returned Yank, visiting some branch of the family every generation or so. Families knew that — like TB, or even cancer at the time — it was best not talked about. Shadowy race memory held references to epileptics found guilty of association with devils, during the witch crazes of the early middle ages, and put to death in their hundreds. But even if those half-remembered horrors were in the distant past, the fact was that new and negative myths seemed to grow up around epilepsy in every generation, including our own.

One of those myths was that epilepsy was a mental illness, this myth underpinned by the tendency, in the nineteenth century, to confine sufferers in institutions devoted to housing “epileptics and the insane”. (The positive side of this was that some of the medical men running those institutions began the first scientific investigation of those among their patients who suffered seizures, and began to develop an understanding of how and why those seizures occurred).

Even in the twentieth century, a widely-propounded theory held that epileptics were more prone to committing murder than the average citizen. It was based on research among men on death row in the US which tended to find that many of these violent killers had undergone a change of personality after a head injury in their childhood or teens, often accompanied by the onset of epilepsy. Head injuries can radically reduce impulse control and skew the way the injured person handles rage or what they perceive as the disrespect of others, thereby rendering them more likely to commit violent crimes. And head injury can also precipitate epilepsy. But the epilepsy didn’t cause the violence to which these men were prone. The belief that it did was the equivalent, for epileptics, of the “Refrigerator Mother” theory of causation of syndromes like autism. Yet, until recently, if the “epilepsy causes people to be murderous” myth was articulated in your presence, even if you knew it to be nonsense, you kept your mouth shut. You knew you could win the argument, but you also knew the prejudice would continue, undiminished by logic. That being the nature of prejudice. To eradicate it, an imaginative, rather than an informational, leap needed to be made to turn the potentially prejudiced into champions.

That imaginative leap was evident, last week, in advertisements in most news-papers, filled with lively colourful shots of children and old people, athletes and musicians, making the point that the epileptic or epileptics among the people photographed couldn’t be identified, because they’re normal happy productive people who just happen to have a capacity for electrical short-circuits in the brain which, for many if not most of them, can be managed by medication. On radio, named athletes cheerfully talked about their awards, adding that, oh, yes, they also have epilepsy. A bit like St Valentine. He’s the patron saint of romance, with his own special day tomorrow — and, oh, yes, he also had epilepsy.

The day before Valentine’s — today — is European Epilepsy Day. You’ll probably encounter someone during the day who has the condition, and you may never know about it. Not because they hide it from you. But because they’re neither defined or confined by it.



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