I always say to people that I’m fine with having epilepsy; it’s the seizures I hate. I am one of the very lucky people to have near-controlled epilepsy and so I don’t tend to worry throughout the day that I’ll have a seizure because they are so predictable and pretty well controlled. However the other day I had been napping and was woken up suddenly. For the next half an hour I had myoclonic jerks and absence seizures.
Absence seizures are funny things to describe. In epilepsy literature they are often described as looking like the person is in a daydream, and for a most part that’s what they feel like too. I don’t tend to know I’ve had one, until I realise that I’ve missed a part of a conversation, or part of the television programme I was watching. The Mother often says “You’re doing that funny thing with your eyes again” and that’s also normally a sign of an absence seizure. I tend to blink furiously for a couple of seconds without realising I’m doing it and this, like my other seizures, happens when I’m tired. I also tend to get more frequent absence seizures when I’ve been drinking – I normally close my eyes for a couple of seconds as if I’m thinking hard about something. It’s quite interesting that my absence seizures are normally evident through my eyes.
I was chatting to my friend Lindsay today about having epilepsy. She has Crohn’s disease and has had a pretty hellish time of it due to Crohn's, and yet she was under the impression that I had had it worse because of the epilepsy. To me that is a sign that you don’t choose to cope with something: you just have to. Personally I think Lindsay has been through a much rougher time than me (and I’m right, so there) but because I haven’t experienced Crohn’s disease, and similarly Lindsay hasn’t experienced epilepsy we each think of each other’s struggles as more difficult. Thankfully it’s not a competition, and I admire Lindsay hugely for going through what she has and coming out with it with a smile on her face. And as she always says “I like to see people squirm by talking about my bowel in length”.
As I always when I’m being interviewed about epilepsy: it’s something you have, not something you can be defined by.