There are times when I forget I even have epilepsy. Some mornings I wake up, feed M, raise eyebrows at O’s hijinks, and before I know it, 10am rolls around and I forget to take my tablets, because I’ve forgotten I need to.
Of course, usually, the next time I enter the kitchen I remember again, and take them only an hour or so late. Sometimes I forget them altogether, which is not so good. Anyway. That’s a sidetrack. The point is, I go about life, for the most part, as though I am… well, “normal” I guess, inasmuch as the word has ever meant anything to me. (I was always the odd one at school, so being abnormal isn’t really new for me. I’m just abnormal in a different way now.) When I have a good week, it’s actually quite easy for me to forget all about the seizures. If I think about it at all it’s to feel somewhat guilty, as though I’m a fraud.
Then there are days like today, when I suddenly remember that, yes. I do have epilepsy, and no, I’m not a fraud. Usually it isn’t even the big seizures that hit it home – the circumstances which inevitably surround them wind up becoming so surreal at times I handwave it as a kind of waking dream sequence. No, it’s the small seizures which drive home the message. Today I had two of them. One of them was more like a bad aura, with mental grogginess and slight confusion, and was probably dissociative. It fitted that pattern, anyway. The second was epilepsy. I mean, I can never be sure, given that I wasn’t wired up, but I felt… beyond weird. It was the same feeling I used to get before I started taking my AEDs (Anti-Epileptic Drugs).
First of all, I folded up. Then my eyes were rolling, and I couldn’t get my lungs to operate on a regular basis. One moment I felt as though I couldn’t lift my ribs up and out, the next I was taking a great big breath, and then a series of smaller ones – totally all over the place. A real mess. Finally, I had tiny little pulses of muscle activity in my hands and calves. Not enough to be thrashing about, but like someone was prodding me all over my legs, and that bed of muscles at the base of my thumbs was twitching. Normally, if I have a dissociative seizure, I might thrash or feel unable to move, but it’s definitely my brain, somewhere, far off, laying down instructions. There’s a little part of me saying “Come on, snap out of it and get up. The room will stop spinning eventually…” This, on the other hand, felt like it must feel in medical experiments where they touch parts of you with those little electrodes to stimulate random muscle groups. You’ve seen them on documentaries about the body, I expect.
It wasn’t scary. At no point did I think “this is the end” or worry that I would hurt myself. But, in a small, specific way, the actions of my body were completely out of my control, and as daft as this sounds, that doesn’t happen very often. I usually manage to convince my self that I could override the seizure if I was stronger, even though that’s patently ridiculous. Most of the time, I have some idea of what’s coming next – I can feel my body working its way up to convulsions, or slowing gradually to the point where my breathing is so shallow that not everyone notices it. This was sudden; shockingly so. I felt at the time that this was a significant seizure, and I think I know why, having thought about it a little more.
The other day I had been wondering just how effective my medication is, and how much it was really helping. The last time anyone adjusted the dosage I take was more than three years ago. The last time I saw my epilepsy nurse was six months ago (I’m in the process of finding out why I haven’t heard anything from her in so long. I expect I’ve fallen off the system again). She’d floated the idea then of reducing my dosage and seeing how I got on, as that would be the only way of knowing what the current baseline state of my seizures is. I mean, some people stop having seizures after a while. Maybe I’d be a lucky one who has grown out of the epilepsy, but I’d never know all the time I put the lack of seizures down to the medication. The seizure today was a pretty effective reminder that no, I’m not going to grow out of this any time soon.
I haven’t been helped by well-meaning relatives, all certain I’ll be just fine in a few years, and it will go away. One older relative keeps quoting a random comment by a doctor when I was in hospital visiting someone, that I would grow out of it and be fine by the time I was twenty three. Well, I’m twenty four now. And let me see… Nope. Still have epilepsy. I guess on the spot diagnosis with no medical history is harder than that. And a bit unprofessional. But is has all contributed to give me a vague sense that, hey, it’s okay, give it a few years and it’ll all turn out dandy. Somehow.
No. It hasn’t. And, no, it won’t. I’m not going to wake up one morning and magically be “normal”. Most of the time, this either doesn’t occur to me, or is so blatant that I just accept it and move on. Every now and then, the message sinks a little deeper, prompted by seemingly unrelated things that are happening to people around me – like W talking about getting his driving license soon. Today, that all came together, and I felt a little barb of self pity, along with my seizure. I have epilepsy. Mostly I’m okay. But I will in all probability never drive again. The other day O turned to me and said that he didn’t want me to have seizures any more. And today, for a few minutes, I felt like someone else had hijacked my body. I’m not hurting. Not really. But that barb does sting.