Ok, bad joke. But I make it at my own expense so it’s acceptable.
For those who know me best the following information is nothing new, and as much as I pride myself on not being the “today I woke up I had breakfast I went to work I came home…” type of blogger, I now find myself limited in both experiences and creativity over the last several days thanks to this topic of discussion which has given me no alternative but to do so.
I, my mother and my brother were all born with temporal lobe epilepsy. The peculiar thing about this is that for all three of us, our epilepsy manifests itself in very different ways and is also treated in very different ways. My mother’s seizures are relatively simple, she merely passes out. My brother, however is afflicted by the stereotypical horror-story type seizures which involve quite a bit of contorting and convulsing which has resulted in physical injury on more than one occasion.
My seizures are the least physical of the three…mine are what’s defined as “partial complex” seizures. Basically all this means is I don’t flop like a fish or pass out.
And, oddly enough, out of the three of us, mine is the most difficult to control. At no point so far in my life has my epilepsy been under 100% control. My mom hasn’t had a seizure since the 80’s. My brother’s docs are still figuring out his meds but he hasn’t had a full-on seizure in quite a long time. I had one this morning. And the day before yesterday. And two more earlier in the week. Combine that with the dozen or so auras I experience daily…yeah, this week has sucked.
My seizures may not cause me to bang my head on the coffee table, but the problem is that they are completely cerebral. If you saw me having one you’d just notice that I’d stopped talking and was staring off into space, unresponsive, for several minutes, eyes closed, and now I’ve been told my hands have been twitching which I think is new but freaks my shit out. Externally this seems like it’s not so bad. Unfortunately on the inside it’s not that pleasant.
Mine pretty much start off with this intense feeling of dread, like the kind you feel in the pit of your stomach when you’re boarding a roller coaster and you hate roller coasters. Then my brain engages in the act of creating false memories, which translates into the most intense and out of control deja-vu imaginable. No matter what I do, no matter how I try and change the events that my brain is going to tell me I’ve lived through before, nothing stops it…I mean, EVERY detail, every tiny thing, has happened before. I usually yell at people if they try to talk to me when it’s setting in; when it hits, talking really can’t happen anymore…talking just isn’t an option so much at that point. This event results in a feeling of complete loss of control over anything and then the panic inevitably kicks in…heart rate jumps, I break out into a sweat, I forget how to breathe. My muscles warm, I usually have to clench something in my hands, my stomach churns, and my head throbs. I don’t talk or try and move because that contributes to the deja-vu. Fortunately those closest to me know to just leave me alone when it happens, because I don’t want anyone looking at me, talking to me, touching me until it’s over. Eventually it passes, my muscles relax, my jaw unclenches, though the pounding in my head doesn’t go away until hours afterwards. I become absolutely exhausted, and can fall asleep almost instantly. What sucks after that is, whatever I do, who I talk to, where I go…if it happens within the first half hour, sometimes even as long as an hour, after the actual seizure, I won’t remember it. It’s just completely gone. I could have burned someone’s house down and wouldn’t remember it, even though it could have been just 20 minutes prior. Then the grogginess hits, the surreal, ungrounded feeling sets in and lingers throughout the day…things just feel “off”…hard to describe. It sucks, that’s it.
Ordinarily this happens only once or twice a month and is not a huge problem. I’ve had them at work without anyone really noticing, and have been able to function just fine despite this…since the actual “non functioning” bit is only 2-4 minutes, which is far shorter than my coworkers’ smoke breaks. What’s going on now is that my body is in the throes of purging the Depo-Provera injections I’ve been receiving for the last couple of years and, how lucky for women, seizures are also hormonally triggered. So this is going to continue for a bit, or at least until my health benefits become effective in 5 weeks and I can afford my neurologist again.
The auras are what piss me off. There’s about 2 seconds of the deja-vu feeling but it’s just enough to throw me off. Start to wonder what’s really happening and what’s a seizure. The lack of control over my brain pisses me off. Makes me unsteady, throws me off, drains my focus. Feel like hiding under my bed with a pillow on my head and wait for my body, my brain and my hormones to get their shit together.
The most amusing thing is that because of where my seizures are located, it severely inhibits my short-term memory. I will tell you the same story, literally, three or four times until you get fed up at nodding and smiling and just confess that you’ve heard it numerous times before. Appointments, people, names, faces, places, directions…unless I’ve been there/met someone/written it down, it’s completely gone. One of the reasons I’ve been keeping a journal since I was 12. What’s really interesting is that I’ll go back and re-read things I’ve written and it’s so completely unfamiliar, even monumental things, it’s as if I’m reading someone else’s story.
Oddly enough I have an insane long-term memory; from every address I’ve lived at (though I had to live there several years for this to be true) to foreign languages to 200 digits of pi; once it’s in there, its in there. Kind of a consolation prize I suppose.