Epilepsy: A Quiet Inconvenience
I’ve talked before about my experience with anxiety, how all-encompassing it was. At its worst point, every time I stepped outside of my bedroom, I was overcome with the intense sensation that I was under an immediate threat. Unjustified spikes of adrenaline would hit me at random times, causing me to rush outside to calm down again. Somehow, I was still polite enough to not run or leave without excusing myself, which, looking back on it, says a lot about my priorities. I’m sure the worst part for me of being stabbed would be how much it inconveniences everyone around me, but hopefully I’ll never be in a position to find out.
Today, however, I’d like to talk about epilepsy, and the quite different experience I’ve had with it. Certainly, a condition as violent in its expression as mine does come with an understandable amount of anxiety. I don’t think anyone would criticise me for it (if anyone does, I would wholeheartedly encourage them to give it a try themselves). This article will focus on the experience of suffering from epilepsy, both how it feels in the moment and also how it feels to deal with the rest of the time.
I’ll begin by setting the scene:
Two days ago, very early in the morning, I had my most recent seizure. I’d had a headache for most of the previous day, and my whole body had been unnaturally hot. The blood was rushing around my head so strongly that I could scarcely ignore the sound of the pumping vessels. My ears were quite toasty. To help me sleep I had Bob Ross on the TV in the bedroom and was finishing up a game of Age of Empires II before bed. It was at this point that the miasma hit me.
It is difficult to describe the feeling one gets before a seizure, because you’re usually more occupied with avoiding the experience than you are documenting it, and so you tend to have other things on your mind than faithful reporting at that moment in time. For me (and it is different for each person) it is similar to the most intense deja-vu you have ever experienced. The momentum of that intense memory carries you down a mental path you can’t stop following, leading to a scenario where you know ahead of time that you’ll have a seizure if you keep along this train of thought, but can’t do anything to stop it. Sometimes it’s accompanied by a strong smell; this is because every sense is overloaded at once with a strange, dangerous miasma.
At the same time, the room stretches out. I don’t mean that it elongates like paint running down a canvas. It feels like you are becoming hyper-aware of everything in front of you; you fully appreciate the space between different objects, between you and everything else, the length of the walls and the distances running to your bed involve. I remember having a similar experience when I was much younger, about 7. This was several years before I was diagnosed with epilepsy, but it’s easy for me to see now the similarities. Essentially, I felt incredibly far away from everything. I was pressing my head up against the wall as much as I could, just to feel like I was near something. It took me 15 minutes to walk to the living room. I was sobbing through the whole ordeal: my parents told me to go back to bed.
Now, of course, I have enough experience with it to realise that what’s happening in that moment is an electrical overload of the left side of my brain, which quickly spreads to the right. In the brief period before my whole brain becomes overwhelmed, I have a lot to do. In my panic I often try to get to the safest place I know, which is my bed. This means sometimes I leave a place of safety – like a sofa – to try my luck at running for the bedroom. I only ever have around 10 seconds of warning, so I never usually manage it. Fortunately, this time I was already in my bed, so the next few seconds weren’t spent madly dashing up the stairs. In most instances, this is all I have time to do: there is no more forethought or action I can take before I’m overtaken by the seizure and collapse in a shaky heap. Fortunately, this time I was able to put the laptop on the ground, turn off the TV, open the door, think twice about waking up Dad (I decided his rest was more important because, again, politeness is everything), take my shirt off so I didn’t potentially choke myself, and lie down on my back so I don’t suffocate. You know, all those fun split-second life-or-death decisions that you have to be prepared for at any moment.
Most of the time I just fall down and hit my head on any number of wonderfully blunt corners (stairs, tables, chairs etc.) because your priorities become confused when you’re scared. Which I am not afraid to admit that I get slightly worried when a seizure is about to happen, since I only have a few seconds before I’m out cold, and later wake up very confused and aching all over. Seizures, in particular the full-body seizures that I’m lucky enough to experience, are especially dangerous because if they are allowed to continue for long enough, then there’s a good chance I’ll die. I will die of exhaustion, having used up all my energy twitching on the floor. What a great way to go out. So, yes, it’s probably for the best that I at the very least try to alert people that it’s happening. I should take my own advice next time and not worry about people losing a little sleep over me.
Anyway, the point is that suffering from such an illness is rather unfulfilling for me (to the extent that a mental illness should be a fulfilling experience). My condition, although severe when it happens, barely ever happens. In the last 4 years I’ve had three seizures. I can count my total seizures from the last 10 years on one hand. I don’t consider my epilepsy to be a proper disability, because I barely ever have to pay attention to the fact I suffer from it. I’m disabled enough to be ineligible to drive or deep sea dive. That’s about it as far as things my condition prevents me from doing. I’m not even disabled enough to receive benefits. Epilepsy is, as far as I’m concerned, an annoyance. It doesn’t dictate my everyday habits, it doesn’t affect my relationships, or how I conduct myself as a person, or stop me from doing the things I want to do. When it does happen, I’m worried less about the experience (which is horrible, of course) than I am about the follow-ups at the hospital – about the MRI scans, and the blood tests, and the months of waiting to hear that everything is OK still; until one day, it’s not. Overloading the brain with electricity isn’t the healthiest thing for it, from my understanding. I’ve been very lucky so far, and I hope I continue to be.
So, what was the point of this little exercise? Why write all this down? I’m not sure, honestly. I think maybe writing it all out is a way to help me get over it. This last one was particularly rough; my muscles still ache even now. I tend to view seizures as a litmus test for my overall wellbeing. I’m currently going through the worst period of insomnia in my life: I haven’t slept properly now for about 15 months; in which time I’ve had two seizures. It stands to reason then that once that is solved, my epilepsy will fade into the background again, and resume its position as another quirk of my personality (instead of a very real medical concern). In the meantime, it’s good to occupy myself. Focusing on other things is always better than waiting in the dark for the reckoning to come. So, I will, as I always have done. It may have taken a little longer to process it this time, but when all’s said and done, epilepsy is just a moment in time for me. One which I probably won’t see again for a very long time.