Yes, that's what I call my epilepsy. I'll take every last bit of street cred I can get, even if it's a 2000-plus year old attribution.
I’ve had seizures since I was thirteen. Luckily, they’re controlled (largely) by medication. I know that, compared to many others, I barely have any problems at all. I don’t have to worry about having a seizure in the middle of the day, for example, or about being hypnotized by blinking red lights.
Still, though, it is distinctly un-fun.
Last winter, I had a seizure during the night. I remember waking up, stumbling into the bathroom and wondering why I was so dizzy. I made it back to bed, no worries no falling. When I woke up the next morning, I was still very disoriented, dragged out, mildly nauseous…in short, this is what I felt like the day after having a seizure. I must have had another one. I felt like crap, so stayed home from work that day resting, making sure I ate and drank plenty, and moving about as little as possible. I contacted my GP, who walked through the symptoms with me, advised me to take a additional quarter-dose of my medication if I felt another aura coming on, and told me to consult a neurologist. (This began the search for a neurologist, as I hadn’t seen one since I returned from abroad four years’ previous.) The next day I felt much better, and since it was Friday and I was going to have a weekend to finish recovering, I went in to work.
This past summer, I fell asleep on my couch one day. I woke up suddenly, and got up to go lay down in bed and have a proper nap. Shortly after standing up, I felt the disorientation and creeping numbness in my fingers that has always heralded a seizure. I made it into my bedroom — large open area, no sharp furniture-edges upon which to injure my head should I start convulsing — and lay down on the floor, trying furiously to calm down. (And if that last phrase sounds vaguely oxymoronic…try it some time when you’re freaked out: calm down as fast as you possibly can, as if your life depends on your being utterly calm.) I slowed my breathing and waited for the dizziness and panic to abate. I eventually calmed down enough to sit up slightly, reach behind me, and grab one of my pillows to put beneath my head. Then I waited: waited for the dizziness to pass, waited for my calm to stave off another seizure, like I’d done a few times before.
As I lay on the floor, Ursa came and sat in front of me and started purring. He’s done this a few times before when I’ve had seizures or seizure auras, and it always helps knowing that I’m not totally alone. Never mind that the cat can’t do anything to help me if I have a seizure. Never mind that, if I have a seizure, I have to ride it out on my own. No one else can do anything for me, other than make sure I don’t injure myself while I’m convulsing. Knowing that I’m not by myself has always helped me before. It’s like a mental security blanket. Purring cats are inherently comforting — at least to those who don’t actively dislike cats. Ursa sitting by me and purring helps me calm down, lets me know that I’m not alone, gives me a focus for something outside myself. I let my eyes close, listened to Ursa’s purring, and waited for the dizziness to ebb. I briefly opened my eyes and glanced at the clock, and saw that about 30 minutes had passed while I lay on the floor waiting for the aura to subside. It seemed like the pre-aura was hanging around longer than it usually had, not going away but not becoming a seizure either.
I remember thinking, “Let’s get this over with, one way or the other” when the trembling started. It was a deep twitching, like the shiver you get when you’re suddenly chilled: it starts at the core of your body and moves outward. That’s what this was. My whole body shivered, my legs and arms spasmed harder, and I felt like I was losing my balance even though I was laying down. The hard shivering moved up my neck, and my vision dimmed just slightly. Eventually, after about a minute, the shivering died down completely. I felt wrung out, exhausted, like I’d just carried three boxes of full of books up the stairs to my apartment. All my muscles were sore, and my stomach was moving uneasily.
Before this, my brain and my body had a little deal going: if I have an actual seizure, I black out. I lose consciousness. I have the aura, I lay down, I black out, I have the seizure, and when I become conscious again the seizure has passed. I don’t remember what the seizure feels like: not consciously, not in muscle-memory. If my body has to go all spastic, my brain gets to go offline and not record the events for posterity. So this episode annoyed me. My brain and my body had changed the terms of their agreement, and had neglected to notify me.
I was also annoyed when I thought of all the fear and worry I’d go through when I felt a seizure aura coming on, the disruption and aggravation and panic my family went through when I began having seizures. For this punk-ass puny little thing, I lived with a lurking fear at the back of my mind? This miniscule little mouse-fart of a twitchfest kept me under its thumb, albeit subtly, for the better part of my life? Compared to most other peoples’ seizures, this was nothing. This was tiny. This was a minor scheduling change, not a condition around which to change a life. How dare this neurological hiccough cause the fear that it did! What the fuck?!?? It was like watching a horror movie and finding out that the menacing shadow on the wall — the one whose appearance was heralded by moans and building-shudders — was caused by a piece of carpet-lint moving in the breeze from the central heating vent.
That seizure really wiped me out, though. It was a week before I felt able to go back to work. I stayed at home, sleeping and eating peanut butter (high protein) and applesauce (some protein, plus liquids), occasionally taking a Dramamine when I got so dizzy I couldn’t even sleep — which meant sleep deprivation, which meant that I felt something very like a low-grade seizure aura much of the time. This recovery coincided with the massive, nasty heat wave that hit the west coast of North America (well, most of the continent, actually). I had problems sleeping for about a month, and asked my GP for a prescription sleep aid…which didn’t help, as it turns out. I eventually spent the nights at my parents’ place, over the hill by the ocean, where it was cooler at night and I could actually get some sleep.
I eventually found a neurologist who was accepting new patients and who took my insurance, got to go through another MRI and another EEG (did you know that in the 1980s they stuck probes up your nose, and now they don’t need to do that? Brilliant!!!), and was prescribed a new medication. This switchover period happened when I was staying at my parents’ place, so if something should go very very wrong I would be near people. Luckily, the new medication required very little time to build up in my system. Unluckily, I had to be taking both medications during the switchover, which lasted for about a week. It’s been about four months, though, and the new medication seems to be doing just fine. Once again, though, I’m a slave to a very costly medication. This stuff is about $350 for a month’s worth, and since the medication is so new there isn’t a generic version yet.
Still, though, as much as this condition irritates the hell out of me, it’s impossible not to keep some perspective. Epilepsy was called ‘the sacred sickness’ by Plato, and was apparently observed in several rulers and military leaders including Julius Caeser, Genghis Khan, and Alexander of Macedonia. If Alexander the Great could conquer the known world in the days before dilantin, I can suck it up and deal.
Related entry: Living With Epilepsy
Keywords: | Holidailies | epilepsy |
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