Today (March 26th) is Epilepsy Awareness Day. So are you aware of epilepsy? Probably. It's unlikely you're aware of mine, though, and for years I wasn't either. I have simple and complex partial temporal lobe epilepsy: it's non-convulsive, meaning I don't do any of that falling-down shaky stuff that makes old people get itchy with spoons (don't do that, by the way. No spoons. Spoons break teeth. Here's what you should really do if someone's having a convulsive epileptic seizure). In fact, I haven't even seen the frothing-at-the-mouth thing people tend to go on about. I have the type of epilepsy they reckon Joan of Arc had - the type people have tended to interpret as religious visions. They're not, of course. But I wasn't diagnosed until I was 22, which meant that - because of not being aware of epilepsy - I had two options available to me.
Option 1: I was chosen by some higher power and should begin interpreting my out-of-body experiences (starting with strong feelings of deja vu, passing into visions and a wave of emotions, and then onto feeling like lightly toasted death for an hour or so) as visitations by God.
I was raised as a Christian (both Anglican and Catholic, but that's another story), but the idea that I, Helen Nina Elizabeth Purves, of Louth (Lincolnshire) had been hand-picked by Almighty God in order to relate His Message to the masses seemed far-fetched even to an extremely imaginative pre-teen like me. As a result I decided to become an atheist, which leads me to my only other option at the time.
Option 2: I was insane, and should never tell anyone about what I was experiencing for fear they would shut me up in a lunatic asylum. This, regrettably, was the option I went for. I suspect that if I'd been gullible/cynical enough to plump for Option 1 I'd be significantly better off by now. The market for human God-conduits is still pretty lucrative by all accounts.
As I result I hung on to my visions, deja-vus and heavy downers for years, terrified by the idea I'd be found out and end up being institutionalised. Unfortunately this was a genuine option for non-convulsive epileptics right up until the end of the last century (in some countries, epileptic people were not even permitted to marry), and many older people are still suffering from years of invasive treatment and padded cells. Like me, doctors and psychologists were not always fully aware of epilepsy. I was counselled for depression, but even then I was too terrified to tell my therapists the real reason for my heavy downers: that I was sticking my head into another dimension.
Eventually, though, I chose a moment to cross a line. At 22, after handing in in my 20,000 word dissertation and radio documentary to Nottingham Trent for assessment in the knowledge I was almost certainly guaranteed to get a good mark for my Masters in Radio Journalism, I decided I'd achieved enough in my life that I'd have good times to reflect upon when in my padded cell. I took myself off to my doctors, wrists ready-moisturised, to get myself cuffed and hauled away. I genuinely believed I would be taken straight to an institution in a straitjacket.
Of course I wasn't, because if I had been it's extremely unlikely I'd be writing this. Luckily for me Nottingham is the best place to be for people with epilepsy (the hospital there actually developed the MRI scanner): my doctor immediately referred me to Queens Medical Centre where I was and still am seen by my fantastic neuro Dr O'Donoghue. I went through the tests within the space of a month, started medication almost immediately and my epilepsy awareness went through the roof.
For example, did you know that St. Valentine is actually the patron saint of epilepsy? February used to be real downer for me before I knew that (I'm chronically and notorious single). This year I even baked and iced an enormous cake, and moaned on about epilepsy to everyone who came and ate it. Epilepsy: a brilliant excuse for cake. I even dyed the icing purple (the colour used by epilepsy charities), put Joan of Arc's flames up the sides and included oodles of buttercream and popping candy for the ultimate crazy epileptic sugar high.
To be perfectly honest, it sucks having epilepsy - it really does, and in so many ways that I could write an article a week for a year and still not cover it. However, it can also be quite funny. I have dozens of stories about things I have said or done when in the grip of complex partial seizures: during these I remain able to walk, talk and use my mobile phone, albeit extremely erratically, and have a tendency to go shopping. Once it was 34 pints of milk, another time one of every colour and brand of washing up liquid in Tesco (aside from yellow - I would never buy yellow washing up liquid, even under the grip of an epileptic seizure). Recently I have had a tendency to veer towards pickled onion Monster Munch - the image at the top is a photo I took during my last complex partial. The accompanying text message, sent to my mate Agnes Guano (he of The Downstairs Lounge), read "Kj vghhhrdftgxffgrwffgg monst ker munches dghvtggf ets etted".
I hope you're more aware of epilepsy now. Probably not: but if you see a tall girl with purple hair and glasses bulk-buying Monster Munch in Tesco whilst mumbling about tramps (example text message: "Tramp sit touch hit bite smell") please do make sure I don't walk in front of traffic. Ta muchly.