02 May 2008

Fit to work*

According to all kinds of official measurements, I'm disabled. I have had epilepsy since 1996 (officially diagnosed in 1997 after a battery of EEG tests). My epilepsy entitles me to a Disabled Railcard, a concessionary bus pass, free prescriptions, Disability Living Allowance and various other things.

And yet I don't feel disabled. I have roughly 2 seizures a year, which is not a lot, although they are full-blown ones and 2 minutes thrashing around on the floor can effectively take 24 hours out of my life as I recover. The problem is I never know when one will strike as I don't get "warnings", which means that technically I'm at risk every minute of the day - I could drown in the shower, collapse while crossing a road or die from SUDEP. So far I've been lucky - almost all my seizures have taken place within the home and I have rarely injured myself. I do take care to reduce risks, especially when out and about, but I don't wrap myself in cotton wool. I just get on with life. If I have a seizure, so be it.

I'm relieved developing epilepsy has not affected my ability to work, apart from the occasional speech problems due to loss of vocabulary (the part of my brain where my seizures start controls this skill), which is a pain in my line of work. It's caused the odd hiccup when interviewing people on making phone calls. Otherwise, it's business as usual. Freelancing gives me extra freedom because of the epilepsy - I don't have a stressful commute, I can rearrange things if a seizure strikes and I don't have to plead for time off for medical check-ups. Having control over how I work matters because I'd be lost without work. I've always worked and been independent - not being able to work would mean a major reassessment of who I am.

Who I am is still me, plus epilepsy. I don't hide my condition and I don't get offended overly much if people make jokes about fits (although people being PC and saying "thought shower" instead of "brainstorm" does offend me). I don't care about being judged either.

Where do I fit in on the great scale of disability? Somewhere fairly insignificant, I expect. I suspect that because I don't see myself as disabled, others don't either. My disability is not obvious, I'm not a wheelchair-user. Occasionally I get asked why I have a concessionary bus pass because I don't "look" disabled. Er, it's because I'm not allowed to drive, that's why. In fact, the biggest hassle is people finding out I'm not allowed to drive and assuming I must have been nicked for drink-driving. So now I'm in the habit of tacking "for medical reasons" on to the end of that particular sentence.

Interestingly, over the last couple of years I have been stunned to discover just how many of my freelance colleagues working in journalism and editing also have disabilities. Freelancing is clearly an attractive option when you have health and mobility issues to take into account.

* This is a "Blogging Against Disablism Day 2008" post. Read more here.


Anne Brooke said...

Very interesting indeed - I hadn't realised that. Two of my past boyfriends (a long time ago now) both had epilepsy. The first one used to have terrible problems with insurance as he was a window cleaner - which seemed unfair to me as he'd had it since a child and it was well controlled. The second one had mild epilepsy and was certified free from it after a certain number of years, thus enabling him to drive again. You've certainly brought back memories for me with this entry anyway!


Unknown said...

I read your entry with interest. I have had epilepsy since I was 15 and it has been an intermittent pain in the butt. Last month I had my first seizure in 4 years and the one before that was after a 9 year hiatus so they're not as frequent as yours but by the sound of it the attacks are of the same ferocity. It's difficult to know how long it takes to recover but I do know that for at least the first week after everything is a bit of a blur...

As you know, it's hard to reconcile oneself with the illness as it's conceived - we are not outwardly disabled and try to fulfill our potential just like anyone else - but in the back of our minds is that small fear I suppose, that we might just keel over and start thrashing about, in the most unacceptable places.

Then again, there is also that danger that we egocentricise ourselves and that's no good, so ultimately just got to carry on. So much analysis....

My biggest concern is the drugs and their effect on my thought processes, vocabulary etc.. I work in research with highly trained scientists (I am a social scientist - much more manageable!) and I worry that the drugs will have a 'stupid' effect on me!

I am interested to know your experience with the condition, as someone who is continuing a normal life despite. Which drugs do you take and is there a reason why you continue to have seizures? Do the docs know why you developed it?

I watched 'Control' the other day - about Ian Curtis from Joy Division - and it was a sobering experience. I ahve never witnessed a seizure before and it was a huge shock to see just how dramatic they are! bit of a grim film all around but I think that was mainly the 70's decor!!


Unknown said...

@Anne - not sure window cleaning and E mix terribly well! Thanks for your comments. x

@Rhilets - I was diagnosed at 35 but it was no great shock, it runs in the family. I went on Epilim Chrono for 2 years which kept my seizures completely at bay. Then I came off it on my neuro's advice and stayed seizure-free for a further 15 months. Then I started a new job and had a massive tonic-clonic on day 2. Needless to say, I hadn't mentioned the E at interview and they hadn't sent me for a medical. And I honestly believed at that stage that I was over it, so it was a bit of a shock when it returned. That was my first public fit and colleagues thought I'd had a coronary. Just as well, or they might have tried to insert something in my mouth.

My boss was fab, very understanding. I was scared I'd get kicked out as I was on probation but he just said to let my immediate colleagues know what to do if it happened again. I went back on the Epilim but 8 months later switched to Keppra, which has been really good for me as I've not suffered with side-effects. I became seizure-free again for 3 years until I got punched in the head (long story). Since then, over the last 4 years or so, I've averaged 2-3 seizures a year.

Perhaps I'm unusual but I've never experienced any prejudice about my E. What I fear is having a fit in public and a) being robbed (it happens), b) someone forcing my jaw open (which is really bloody dangerous), c) some religious nutter type sitting on me mid-fit and trying to cast out the devil (that happens too), d) someone needlessly calling an ambulance. I do carry an epilepsy card in my bag if I'm out, just in case. Touch wood...

Ideally I'd love to come off the meds. Realistically, I accept it's unlikely. I also accept I'm unlikely to drive again and I'm not too bothered by that, if I'm honest.

Control - interesting film. I watched it because I was a teenage punk. I thought the "seizures" were unrealistic and was shocked Sam Reilly had been advised by an epilepsy charity to get them right. I've seen others have seizures. What was unrealistic was his almost instant recovery period - 5 minutes after fitting on stage he's having a lucid conversation with his girlfriend... yeah, right... as if.