One day, about three years ago, someone said something very strange to me. It was quite a simple statement and, oddly, I cannot quite remember it verbatim. I can tell you where it happened; on the steps leading onto the Mall at the bottom of Regent Street. I also can’t tell you who it was that said it. I know it was a man, and I know second hand that they were an off-duty paramedic. What they asked me, pretty much, was how long I’d been epileptic. This was strange for two reasons. Firstly, because I didn’t have a clue where I was, or what was going on and secondly, because the only thing I did know was that I’m not epileptic. Well. I wasn’t epileptic. Or at least I didn’t think that I was.
I was diagnosed with epilepsy soon after I developed it at age 23. I had a couple of seizures; it would appear, before the above mentioned one had me taken by pure chance to St Thomas’ hospital in central London. It was quite a worrying time, especially when my neurologist told me what it was that had caused those seizures; Reading. I am allergic to reading. Not Reading (the large Berkshire town (which wouldn’t, actually, be a terrible thing to be allergic to. (Although it does have a sizeable HMV and a really good Waterstones)) But reading. Books. I am allergic to books. I was told this mere months before starting my PGCE in Secondary English. Oh doesn’t life hand us the greatest of ironies?
A note, A little deviation: I do not suffer from a particularly bad variety of Epilepsy. I average about a seizure every few months. Effectively, I have the Epilepsy version of a badly sprained ankle. Many people don’t really have the first idea what entails epilepsy. They think that if you stare into a flashing light you have a little twitch on the floor. I stare into flashing lights all the time. I’ve even done the doctor’s test for photosensitive epilepsy (it’s horrible) and I am most definitely not floored by flashing lights. A decent book on a long railway journey however, and the entirety of the First Great Western railway network is all kinds of flashing delayed signs.
However infrequent, I have pretty bad seizures; the kind that cause you to be unconscious and twitch and bite the sides of your tongue off. The kind where, when you come to and try and phone someone, you can’t unlock the screen despite the code being your date of birth. (This, I’m afraid, actually happens. I am now banned from having phone pincodes). I read somewhere that having a seizure causes the same fatigue as running a marathon, but I am always pretty sceptical of this sort of arbitrary comparison.
I was diagnosed just before the beginning of my PGCE and my offer had well and truly been accepted. Theoretically, I guess, I could have just rung up the university and explained to them and gone back to the very average receptionist job that I was temping in until the course started and then just lived out a life of being wholeheartedly boring and regretful. I don’t really go in for that sort of avoidance of adversity so I just got on with it without thinking and then, suddenly, on my first placement, people starting making a fuss of me, asking if I was alright and if there was anything they could do and suchlike and I had difficulty in (and even as writing this I can’t quite find the verb.) achieving the humility required to actually admit that I was different in my needs. We tailor so much to our students because of so many things but we are often too proud to admit that we need help. Or maybe sometimes we are just a little surprised that people actually ask if we need help.
I used to talk to my students about my condition. I think that it is important to be an ambassador for epilepsy. There is this great fear of revealing anything to students about ourselves but I don’t see the point in avoiding a situation where students can be holistically educated. I didn’t walk into a classroom and say ‘Hi, I’m your new English Teacher and I’m an epileptic.’ But if a student follows me along the conversational road of why I get the train to school and not drive I don’t see a reason not to explain why the DVLA took my licence away.
It is a central responsibility as teachers to be carers. One of my students asked me once to adopt her and I’m not entirely sure she was kidding. But how can I care for others when I can’t guarantee that I can care for myself? That is the fear. That I should never really have been doing this profession and so, when the post-seizure sadness comes across me and I spend a few days staring into the middle distance because I can’t trust myself to read then I tell myself that what I can do is use my experience to teach my students something. I can teach them what epilepsy is. And what it means to live with it, even in my diluted form. And what is most important is that I can teach them what it taught me: That sometimes life is annoying enough to seem cruel and it’s not personal or, even if it is personal, if you think of it in that way it will ruin you. So all you can do is quote Vonnegut with ‘So It Goes’ and get on with what you wanted to do anyway. And I’ll wear purple trousers on national epilepsy day and I’ll give an assembly or two and I won’t be afraid. Because having an illness is just a thing that happens. And I won’t let it stop me doing anything.
As regular readers will know, I have taken a little sabbatical from teaching to go back to university and study for a masters under the false assumption that I look just about young enough not to be a creepy mature student. I have to read a lot but I know that it is what I want to do. I have to run the risks because if I just coup up and cry about it then I won’t get the chances again. I won’t lie, things are tough. I spend a lot of time worrying. Seizures aren’t nice. When I’m about to have one I lose control of my internal monologue and it just spews words out at random. I can’t speak so I can’t warn anyone what is about to happen. Then I black out. When I come to I’ve normally bitten off both sides of my tongue and I don’t really know what’s going on. I wouldn’t wish them on my worst enemy. I also don’t expect sympathy for it. I can’t change it, but I have had to change me a bit. I still get fed up with people telling me to be careful though. It gets annoying, but I know that they care.
I will go back to teaching, I am sure of it. And I hope that I am surrounded by staff as accepting and kind as those were at my last school. They gave a shit, regularly and compassionately. They gave me lifts, helped me with marking and made sure I was okay. When I did have seizures they covered me the next day and forced me to stay at home. They were probably a good chunk of the reason I never had a seizure in front of children. I never wanted students to suffer because of me.
It’s taken me quite a long time to write this article and I still don’t really know why it exists. It’s part motivational speech to myself, part plea for wider awareness and, I hope, a little bit of inspiration for others in similar situations. It’s amazing how helpful your friends and colleagues can be, and what you can get through if you really want to. Right now I am sat in a university library surrounded by books that I am allergic to, and I couldn’t be happier.