Thursday, 11 August 2011

Who's there?

I have often said that I do not lose consciousness when I have a seizure. I say this because I can remember them afterwards - some clearly, some less so - and because I can respond to things while they are happening, occasionally by talking, but mostly by flexing my fingers a little. Once I even managed to stop myself falling down a flight of stairs.

But, as much as I often find myself thinking "Hello! I'm still here," when people talk over me as I lie prostrate on the floor (usually this is paramedics or the general public. Family and friends know the drill by now it seems), I sometimes wonder who "I" really am at these times. When I am having a seizure, my awareness of what's going on is often really skewed, and my priorities and behaviour is so different that I could almost be someone else entirely.

I've caught myself thinking, before now: "It's all in your head. If you weren't such a failure you'd brush yourself down and move. MOVE, damn it, stop lying there hardly breathing and scaring people." I've dared myself to move an arm, a leg, something. I can feel it there, it's not numb, I should be able to move it. Open your eyes, close them. Stop pretending.

Me having a seizure is certainly angry. Especially since, most of the time, it turns out that actually I can't move, or talk, or get up and say "ha, fooled you!" because, well, I'm having a seizure. And if I can move, it's because I'm having an aura instead, and I'm still a danger to everyone, because I'm completely shot away. I've been known to giggle hysterically for no reason at all until I hyperventilate, or start walking around in circles, or sing loudly and tunelessly. I'm certainly not fit to be looking after children, or crossing roads or shopping in that state.

I had a fairly severe seizure earlier. I'd say it's the worst I've had in...months. Maybe all year. I thrashed around so much that I felt sick. My eyes were open, then closed. I had some control over limbs, then I had none, and by the end I felt exhausted, headachey and nauseous all at the same time. And then, I got this wave of anger, out of nowhere. All of a sudden, I was absolutely nutting furious at... everything. Epilepsy, doctors, people. Life, basically, had shafted me, and I was sick of it. The adrenaline kicked in and I was going to do something. March, write letters, chain myself to railings, that sort of thing.

As my white-hot rage began to subside, plain exhaustion took over, clouding my memories of the seizure so that now, just a couple of hours later all I have left of an hour and a half are a few hazy snatches, a moment thrashing here, a minute or so staring blankly at the ceiling there, my son briefly popping into my field of vision to say goodbye before he departed on his hastily arranged visit to W's parents, and then an unknown period of time lying pretty still and feeling crap. Some of it is put together retrospectively. W says I was shaking violently for about three or four minutes, so I know most of the time was me recovering. I tell myself that, and memories of lying in bed start to reform, growing from stumps to fill in the blanks. My brain has always been fairly good at this - for years I was convinced I attended my grandfather's funeral aged 4 and had to sit in the car the whole time, and it turns out I was actually 200 miles away with my other grandparents. Nonetheless this memory was detailed enough to have me convinced, mainly because I was young enough not to find it odd that I'd be left alone in a car during a funeral in the middle of the Welsh countryside.

I have begun to question that self-loathing which appears during my seizures. Is it a by-product of adrenaline, the fight or flight process trying to kick-start my body into actually doing something? Or is it more complicated than that? (Probably.) When I was first diagnosed, I worked in retail, for a large chain. The company supported me, and took account of what the doctors were saying. HR didn't care, the company was far bigger than me, and there were procedures which took care of everything. As long as I had my doctors notes, there was no problem.

The people who worked in the store with me were another story. Some were sympathetic, and helped me - it was one of my colleagues who was the first to suggest that I may have epilepsy, based on a first aid course she had just completed. But others doubted me, a lot, and gave me the impression that I must be faking. There were a lot of looks which said "Oh, that's convenient for you", and a lot of studiously avoiding me so that if anything happened they wouldn't have to look after me. The early days of my coming to terms with the fact I had epilepsy were also riddled with self-doubt. I was nineteen, still lived with a parent, and had very little confidence. I noticed that I had more seizures at work than at home, so I began to get paranoid that somehow maybe this was all in my head and there was really nothing wrong with me at all. The fact that I had had an EEG which showed brain activity pretty classical of epilepsy bypassed me. I hated myself for ruining my own life.

Eventually I got over it, and realised that no, I was not making it up. After I was signed off sick indefinitely, and was away from those people calling names, I realised that what I was experiencing was bullying, plain and simple, and with the help of W (who I met a few months after being diagnosed) I got some confidence in myself back. But to this day, I sometimes wonder if a legacy of those experiences, of knowing full well that the people around me thought I was attention seeking and making it up, has given me this angry alter ego who just hates me. If it's all the deep fears and insecurities, attacking me at my most vulnerable, grown from the ignorance of those who didn't understand why I was having seizures out of the blue and assumed that I was simply skiving off.

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