I don’t like thinking of myself as disabled. I try not to, as far as possible. So the times where it’s unavoidable prickle all the more. I don’t like the fact that, some days, I have to go and have a lie down just four hours after getting up because I’m having an aura and bed’s the safest place.
I don’t like the fact that M misses out on going to groups, just as O often did. I don’t like the fact that I often injure myself while shaking and thrashing (I had a nice red mark on my forearm the other day). I hate (with a fiery passion) the fact that W spends his days watching me for the moment when I start acting differently.
I can live with the seizures. Well, I have to. No one’s found a way to make them stop yet, and even the CBT guy said they couldn’t guarantee it would put an end to them, only that it was very likely to help. I can even live with occasionally beating myself up; pulling my own hair, scratching myself, throwing limbs into furniture, you know. I managed to wrench my arm yesterday, which was a new one. For one brief, painful moment it felt like I was dislocating my shoulder. I tell you what, that really hurt.
Still, it’s not a lingering thing, like the guilt. Guilt’s a funny old thing really. Rationally – of course – I know it’s not my fault and that there’s no need for it, but then rationality doesn’t really feature much in any human emotions. When my seizures affect W, O, or M directly, I feel guilty.
It was one of those brief windows in which I was alone with O that I feel most guilty about at the moment. I started having a seizure. W was upstairs with M, and it came on fast enough that I couldn’t call up. I staggered over to the sofa and slumped onto it. I think my arm fell over my face a little. I could see, but not very well. Now, the amount of time this took is still very hazy, but I do know that for a while, O didn’t notice. The TV was on, he’s normal child, of course he didn’t.
When he did, he came over, and I think he told me to get up. He told me something, at least, and of course, I couldn’t reply. I remember him peering at me, looking into the gap I could see out of, and frowning. Then he said, quite casually, I must add: “Maybe she’s dead.” He repeated his opinion that I was dead a few times, with different variations. I can’t remember it particularly clearly, but I do recall that at one point he remarked that daddy would have to take me away and make me not dead any more. So I take comfort in the fact that his idea of “dead” and mine don’t match entirely. Eventually, he held my hand and sat in front of me. (Not the safest place for him to be, but I wasn’t able to tell him that.) I managed to squeeze his hand, much in the same way that I signal to W that I’m okay. I’m still not sure how much he understood, and how soon, but he did let go in the end, and after another effort in which I managed to point upwards, ran to the bottom of the stairs and called for W, saying that I was having a seizure.
Now, for a boy not yet four years old, I don’t think he did badly. In this situation the crap one was, let’s face it, me. I can see the funny side of it, of course. I mean, he didn’t at any point seem particularly traumatised by it. At one point, in a complete monotone, he said: “Oh no, she’s dead,” and promptly prodded me in the arm. (After all, what are dead people for?)
Still, much as I am comforted by the fact that he hasn’t been traumatised by it all, I really wish that sort of thing didn’t happen. Ever.