Epilepsy isn’t a ’sexy’ issue – that is, one the media aren’t hungry for because they want to ‘tell stories’ or ’spread the word’ or even….invite help or fundraising.
Frankly, it’s much like telling acquaintances that you have a ludicrously-catching disease because they’ll take a step away from you (the same goes for epilepsy, in my experience.)
With genuine respect to anyone is suffering horribly from other problems, I have to make the point that epilepsy – one of the oldest medical nasties known to man/womankind – is majorly misunderstood.
As soon as I say the ‘E’ word most people have a vision of sufferers lying on the floor, shaking and spitting. Yep, that is one of the 40-plus forms of the condition that are diagnosed as epilepsy and treated with anti-convulsant drugs.
I, personally, don’t do the lying on the floor bit so people who don’t know me would think I have episodes of madness – I recover in about 15 minutes but by then they’ve usually ‘had good reason’ to leave.
So what’s my particular problem? (It’s called complex partial epilepsy if you want the technical term). I apparently always start by saying ‘No!’ (think that must mean ‘no please don’t let this happen’); talk rubbish usually in an unknown language (nobody even tries to understand); stamp if I’m standing up; kick if I’m sitting down – and if someone is brave enough to to hold my hand, I’ll clench onto it as if they were trying to stop me falling off a cliff. Oh and and I look very, very scared.
The fits last for about one minute (two max) and after 15 minutes I’m back on whatever track I was on before (as in, meeting, coversation.)
For me, fits give me a bit of involuntarily ‘time out’. For anyone who hasn’t seen it before, they’re on the point of calling an ambulance (unnecessary unless this pattern repeats itself without any sign of stopping.)
But it’s very tricky to keep you reading about epilepsy if you have no experience of it. I have to ask how many of you would know a. if you you could identify a fit (no dunces hat there – it really is one of those ‘unexplained’ problems) and b. if and when you’d know when to call for an ambulance – whatever the sufferer tells you.
OK, it’s not sexy and I’m not going to start quoting statistics – but, believe me, this is an issue worth knowing about. You don’t have to go to nightschool. Just give it some thought. You are very likely to be able to help somebody – and probably not who you imagined. (But I don’t want to scare you). Epilepsy for most people is a one-off episode. JUST KNOW WHAT TO DO.
The rest of us, for whom it’s likely to be life-long. would appreciate your understanding too.
