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.
You are an inspiration. I'm about to embark on a PGCE Primary... I hope, if I haven't killed anyone (or myself, in my numerous falls down the stairs!) before the end of May after three hellish years of Psychology with Counselling. I have epilepsy also. I was diagnosed at nineteen, had the godawful light test, which although I apparently had an absence during it, I'm not photosensitive. I'd had very little sleep the night before (we were living in the car) and mine is caused by lots of stress, and/or no sleep. It's taken ten years to sort out this pill and that from ones that put me weight on, to ones that make me insane (I actually hurt someone, I was that angry all the time, and it was the pills! I couldn't control myself! Lamictal is a nightmare!) But now I'm seizure free. Unless the pharmacy is shut and I forget to reorder... I have the world's worst memory so if I don't reorder, I get unlucky... I was able to drive last summer for five months... after ten years can you believe?! It was bliss! For a girl who wanted to be a HGV driver because she loved driving that much, to not have driven in ten years, to get to drive again, it was so amazing... then to seize after five months... well, this winter has been the worst... but I should be driving again in April, and hopefully starting a PGCE in September, if they'll have me. I was looking up to see if they'd have me because I'm epileptic when I came across your blog page. I'm glad I did. It's nice to feel less alone. I hope your Masters went well, and that you're doing okay.
ReplyDeleteThanks for the boost, and I know why it exists... because you knew that it's nice to find others just like you, and that someone else might need to hear your voice just as you've perhaps needed to hear another's...
This post gives me hope.
ReplyDeleteI have a very supportive set of colleagues and friends at my current school, which is my first teaching job. I had my first seizure last october after an undiagnosed brain hemorrhage last July.
I have alot of medical things up in the air. I thought the seizures were under control until I had 1 two days ago. Meds have been upped but I am terrified of going back to work incase I have one infront if the students!
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