There’s a lot of words for what I have. Some people call it daydreaming (they’re wrong), some people call it being dizzy or dozy (also wrong), some people think it’s just incredibly rude (again wrong). As far as seizures go, the absence seizures I have are pretty chill. They aren’t particularly life-threatening and they aren’t the scary seizures you see on TV. Most of the time you can’t really tell unless you are looking for them.
Saying you have epilepsy is kind of similar to saying you have cancer. The very basics are the same, but the way it affects you is different. My brain waves are just as messed up, but the results are less noticeable. There are two types of seizures: grand mal seizures, which are the full body seizures, and petit mal seizures (what I have), which are on a much smaller scale. A lot of the time I don’t even realise I’m having one.
The most common question I get is “what is it like to have a seizure?” which is kind of like asking someone what being asleep feels like. When I’m having an absence seizure, although my eyes are open and I don’t seem unconscious, I am unconscious in the sense that I have no awareness of what is happening around me. I cannot hear what people are saying to me and I do not notice when people touch me. In front of my eyes, I can really only describe it as a fuzzy image of my surroundings, like I’m surrounded by a screen that I can’t manipulate. I’m just completely disconnected from everything.
Coming out of it is like waking up from a nap. Sometimes I’m a bit confused, for example, if I’m in a lecture and things have moved on and I need to catch up. The seizures don’t last very long, and there have been times where I’ve put my hand up to ask or answer a question, had a seizure and then when the lecturer has turned to me I’ve been well, confused. About as confused as anyone would be if they were asked about development policy immediately after waking up. Though I’m fine, honest. I don’t experience the exhaustion that other people with epilepsy have, luckily.
The worst is probably the effect on my short-term memory. My short-term memory is extremely, extremely, extremely affected by them. I forget everybody’s names, like literally everyone’s. If I have ever forgotten your name and/or existence I’m very sorry, but I have a great excuse. Sometimes I forget that I’m holding things, or what I’ve done that day. I have a very clear memory of being thirteen, picking up some treats to buy for my cats, then immediately forgetting I was holding them and just walking straight out of the shop (I realised 10 minutes later, and I went straight back and replaced them). Or the reason I’m so bad for ghosting people on Facebook. I look at the message, make a plan to reply to them when I have time, close Facebook and the message just stops existing in my brain (again sorry if I’ve done this to you).
The best part? Sometimes people’s reactions are hilarious. Obviously, I cannot control when and where I am having a seizure, occasionally I happen to have one while glancing in someone’s direction. It’s hilarious how freaked out people get by some random girl staring at them, completely unresponsive for a while. One thing that happens when I have a seizure is if I’m doing or saying something I may just repeat that during the seizure. One of the first times that some of my friends noticed my seizures is when I went to say my housemate’s name, Cat, but had a seizure while doing it and just randomly said her name five times while staring intensely at a spot on the wall, again completely unresponsive.
As it is subtle, it can be difficult to get people to understand exactly what it is, when I’m having one and accessing support. When I was much younger and I was first diagnosed I went on loads of different medications. None of them worked out. One pill gave me insomnia, one made me very emotional, to the point where I’d get extremely angry or just burst into tears for no discernable reason. When it got to the point where the side effects were being worse than the seizures themselves, my parents and I made the decision to take me off of the meds and I’ve been managing my seizures without them ever since. The majority of people grow out of having absence seizures by their teens, so we didn’t really see the point in keeping me on medication.
One of the main questions I normally get asked when I tell people about them is “what can I do to help?”. Everyone who has asked and will ask, thank you, I really appreciate it. In terms of the seizures themselves, there’s little anyone can do really. If anyone takes anything out of this article, let it be this; educate yourself, expand your mind about how other people’s minds work. When it comes to seizures, it’s not really the seizures themselves which affect my life as much as people’s perceptions of those seizures. If someone is a bit flustered or confused when answering a question, don’t assume that they’re dumb or incompetent. If someone appears to be staring into space, consider that they may not just be ignoring you. If someone is inconsistent on messenger or is extremely forgetful, think about the reasons why. It may surprise you.
by Megan Thomas