So, I’m in the cinema with my brother’s girlfriend. We haven’t known each other long; we’re bonding. It’s a Saturday morning and it’s a fairly busy theatre but not packed out. We’re there to see Quantum of Solace. James Bond appears on the screen and I start fitting. I’ve talked before about having a seizure in a pub and the logistics of that, now picture the scene in a cinema. Those seats aren’t very forgiving on your average epileptic. Add into the mix the noise, the darkness, me swearing at the top of my voice, my freaked-out friend and the fact that a lot of people have paid good money to watch Mr Bond. I don’t remember, but there were one or two patrons who thought my friend should just shut me up. They didn’t give her any ideas on how she should achieve this so, unfortunately for them, I didn’t shut up. Neither would I leave the auditorium when the paramedics arrived. Their efforts to coax me from my seat and get me to the waiting ambulance were met by outright refusals on my part and not quiet, well-mannered ones at that. This, by all accounts didn’t go down well with the “shut her up” brigade. A lovely person who was sitting behind us, had tried to help my friend keep me from hurting myself, unfortunately we didn’t get her name, but if you happen to be reading this – thank you very much! There was a time when an episode like this would have mortified me. There was no way I would have returned to the cinema and there was no way I would put myself in the position of humiliating myself again. The thing is though, I didn’t humiliate myself. Those that thought I should just be quiet were the ignorant ones, and 99% of the people in the cinema were probably more embarrassed for them than for me.
Daniel Craig doesn’t really do it for me; he’s just a bit too pouty.
Charles Dickens, Leonardo da Vinci, Agatha Christie, Danny Glover, Michelangelo, Julius Caesar, Napoleon, Pythagoras (got to love him and his theorem), Hugo Weaving, Sir Isaac Newton, Richard Burton….all suffer(ed) with epilepsy. They all live(d) a productive life. They aren’t remembered for having epilepsy, so I don’t feel the need to be remembered for having it either. There are too many other things that I have done, can do and will do with my life. If anything, my epilepsy has spurred me on. Why should I place limits on my life? As long as I’m not endangering anyone else, am fully aware of any consequences, then I don’t see why I can’t jump out of a plane.
You may have noticed that I talk about “my epilepsy” a lot. I own it, it doesn’t own me. I also refer to it this way, because every person experiences epilepsy in a unique way. I have adult-onset epilepsy. I had my first seizure at 15yrs old and was diagnosed when I was 17yrs old. I won’t grow out of it, but I think I have grown into it. I don’t think I’d even heard of epilepsy when I had my first seizure in Mr Marshall’s English class in 1986. It certainly wasn’t a hot-topic of conversation in the common-room! I was poked, prodded and pronounced fit to return to school though and the episode was chalked-up to “one of those things”. I was just a hormonal teenage girl. Epilepsy is a disturbance of the electrical activity in the brain. It’s a malfunction of the software if you like. My physical brain, the hardware as it were, is perfectly normal. Unfortunately, brain software doesn’t come with a guarantee and receipt, so you can’t take it back and demand a refund. So, I live with it. I accept it and I tolerate it. It is but a bird-dropping on the path of life.
My epilepsy doesn’t just affect me though, it affects all of those around me. My family, my friends, my colleagues and James Bond fans. They have to deal with the physical consequences and some of them are affected by the emotional consequences too. The lady who persuaded me to write this blog is the mother of a beautiful young girl who also has epilepsy. Her seizures are affectionately known as the “shakies”. Well, her Dad once asked me “Does it hurt when you’re having one”? He asked this because his gorgeous little girl, like many of us who suffer epilepsy, screams when she is having an episode. To him, it sounds like his little princess is in total agony and there is not a thing he can do about it. I can not imagine, I don’t want to imagine the feeling of helplessness. But, this is actually a question that I have asked myself many times over the years that I’ve suffered. I have concluded that during the actual seizure itself, I feel no pain. Or, if I do feel pain at the time, I don’t remember feeling it. Memory issues. Hmm, I guess I’ll get to that later..
For me, if I’ve had the misfortune to hurt myself during the fit, then I might feel pain when I come round. I do generally have a cracking headache, but I think this is mainly caused by dehydration. The jerking puts a massive strain on your body. It was explained to me as my brain telling my muscles to contract and extend at the same time. The electrical wiring is having a surge, the muscles don’t know what to do, so they try to do both movements at the same time and it causes the jerking that’s associated with a seizure. Imagine doing a million bicep-curls with 25kg weights in the space of 5 or 6 minutes and you’ll get the idea. So, yes, there is some physical pain afterwards; but, for me, not during. The other thing that I’ve had people tell me is that they feel guilty because they could not stop me from hurting myself. My response to this is simple. It all happens so fast, generally people only realise something has happened when they hear the noise of me hitting the ground. I don’t hold anyone accountable for me ending up on the floor having a shakie, all I ask is that you try to create a space around me to lessen the chance of me injuring myself. How you’re meant to do that in a cinema though, I really don’t know….