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This article was published in March 2013. The information may be out of date. Please check our epilepsy information or our site A-Z.

Disco dancing on your back: Howdy – I’m Jake

25 Mar 2013

Jake BasfordIn a new regular column, Jake Basford recounts his experience of epilepsy and of being a young gay man in the UK today

Ok, so presumably you might have read about me in the printed version of Epilepsy Today. You might have been told to come here by a friend, or even accidentally landed on this page. Either way: Howdy – I’m Jake.

I knew I was gay since I was about 13 or 14. I didn’t know I had epilepsy until I was 18, although I had my first seizure at 16. (It was so badly timed that I missed my first day at a new sixth form and almost got hit by a lorry. My mother [having just found my cigarettes] chased the ambulance up the road, screaming ‘You started smoking?!’) The comparisons that can be drawn between these two life-changes are relatively similar, in terms of the stress that they can cause.

First off comes the suspicion. You can’t test for homosexuality (although I suspect some people wish you could). Similarly, you can’t tell if someone has epilepsy unless they have a seizure while in a brain scanner. In both cases, you have to go through a series of probing questions to see if the descriptor fits.

Admittedly, the questions about which gender – if any – you prefer can seem simpler to ask and to answer, but the impact of the result can still be fairly substantial. The same can be said for epilepsy. So while my orientation came back as ‘homosexual male’, my neurological response highlighted ‘juvenile myoclonic epilepsy in the medial-temporal area’. I still don’t know what any of that means, five and a half years on.

Next comes experimentation. For neurology, this seems to be a case of ‘let’s see if they're faking it’. This means attempting to replicate the conditions of the first seizure to see if you have a second. This is harder than it sounds, since hundreds of different things can trigger an epileptic seizure. I was given an anti-epileptic medication that I was told a couple of years later can actually lead to more seizures. (Naturally, I heard that from friends in the drug industry – not my doctors.)

Yeah, I found out the hard way that I definitely had epilepsy. I was discovered by a guy on my corridor in the communal bathroom underneath two toilet cubicles. I will leave the sexual experimentation to your imagination, but suffice it to say my test in that department came back positive, too.

Then there is acceptance of self – I am homo, hear me roar! Alright, I never actually said that. And I definitely didn’t roar. It took moving to a school 40 minutes away to do it, but I found a way of accepting the fact that I was gay. ‘Person with epilepsy’, however, is still not a label I attribute to myself. I also hate the term ‘seizure’. Whenever I have to discuss one with my friends, I refer to it as ‘disco dancing on my back’, because at least it takes the sting out of the seriousness of it.

My friends have been good to me over the years. My last brain attack (another useful nickname) was well over 18 months ago in the wake of a particularly alcohol-fuelled flat-warming. There, four of us happily sank three bottles of gin. They were a little petrified – apparently it sounded like I was trying to beat up the bathtub. Still, they knew what to do (I told them beforehand) and just let me get on with it.

Having been in the terrifying position of watching someone go into a seizure, I know how nasty it looks, but overreacting can really make the situation a thousand times worse. (Just in case anyone reading this has a friend/partner/lover/brother/dog who has epilepsy.) The seizee (is that a word?) probably knows better than anyone else what they need to do to normalise themselves afterwards.

Now, here’s a good one: telling the parents. My first seizure actually happened on top of my mother, so that wasn’t a difficult conversation to have. The homo thing? Significantly more difficult. Short version: my aunt and uncle came round for a meal on Christmas Eve. We all got drunk on cheap wine to the point where my aunt asked for a kiss. I made a joke by saying she was out of my age range. She got all uppity and offended, going on and on about how she didn’t mean it like that. Eventually she went, ‘You must fancy me or something.’ To which I replied, ‘Unless you’ve got a penis under that skirt love, I don’t think so.’

Anyway, no sooner did I get them into a cab home, my mum asked, ‘Does this mean you like boys instead of girls?’ No Mother, I like men. Dad grunted, ‘You never truly know until you’ve had sex with both.’ Well, that means you’ve slept with a bloke then, doesn’t it? Anyway, it’s eight years later and we are all cool about it, but it still comes up as a topic of conversation from time to time.

Lastly, there’s the issue of telling the people in your life. Weirdly enough, from my experience, I only have to tell people I have epilepsy if I am about to sleep with them (literally sleep with them) because my seizures are triggered by sleep deprivation. This can make people reluctant to share my bed. Similarly, some people feel weird about sharing a bed with a gay guy. Because – of course – it automatically means that I am going to want to have sex with any and every male alive. Have you seen Wayne Rooney? *shudder* Preparation is always key – I always carry medication and I always carry condoms. You know, just in case.

The similarities between having epilepsy and being gay are clear to see, looking back over the past decade of my life. Neither is something I would change about myself, because if you start to pick at one thread the whole tapestry falls apart. If anyone was to come into my life at this stage and wanted to marry me (civilly or religiously), they would have to accept me as a whole. The least of my descriptions are my sexual label and my neurological status.

Editor’s note: Alcohol can trigger seizures in some people. How much a person with epilepsy can drink without risking a seizure is different for every person. For advice about epilepsy and alcohol, email the Epilepsy Helpline or speak to your doctor.

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