Napped. I hate napping. I wake up nauseous. Some fucked up epilepsy annoyance. Not actually nauseous, either. If I accidentally dozed off before dinner I learned to eat nauseated knowing it was just a neurological illusion. Anyway, here comes dinner.
Too much writing on Facebook and my mind is gelatinous trying to work this new smartphone. The air drifts about listlessly in the fan stream like it died days ago and is just waiting to be buried. To be reduced to ashes and scattered in the wind. But there is no wind. Somewhere there are breezes and rumors of breezes. Here there is just stale air and mental fog. The smart phone twitches. My massive digits manuever like elephants across the keyboard, creating a new language of typos. I don’t need any of this stuff. Outside is a whole universe, I can see it out the window. Here are just apps, meaningless, useless apps. I touch one, it lets out an irritating finch like tweep and asks me an inane question. There is no fuck you button. The fog settles in, the fingers go numb and the view out the window is suddenly Van Gogh, and I stop typing to watch it in epileptic silence.
Not being able to write anymore is so strange. Stories still unreel in my head continuously, as always, sentences piling atop one another, everything I hear and see and touch turning into words, but when I put my fingers to the keys I can’t write more than a sentence or two or three before the fog rolls in, and the numbness, and the rumble of electric storms in the background. It’s like having a head full of music and no hands. A bebop of words trapped in my skull. I sit at my desk, surrounded by reference books and notes and ideas, and I stare at them like the ruins of some dead civilization, my own personal civilization, gone forever. The epileptic fog rolls in, the mind slows, and I retreat to the couch in a haze and stare.
Man, writing is triggering epilepsy now. This is just perfect. Not rolling around the carpet epilepsy, but the slow smoldering kind that if left unchecked begins send electro-chemical sparks in all directions, till eventually the brain looks like southern California on a Santa Ana weekend, brushfires everywhere. Even comments in Facebook are a problem if they go beyond just a couple words. And posts like this, sheesh. I think I have only blogged once in two weeks, maybe twice. Afraid to push my brain into a sizzling overload, memories and skills and personality shorting out. Been there. It can go on for months.
Really intense writing has always been a trigger, and I use to play around with my meds to keep the muse going–but suddenly this month it is any writing at all. And when I go without writing, I can feel the epilepsy fade to normal background levels. The problem is that once things become triggers, they rarely untrigger. You spend your epileptic life removing and avoiding the things that set you off. I always figured writing would go eventually, as the hole in my brain–the focus, in the parlance–is in the frontal lobe near where writing is handled. Writing, language, etc. Eventually the dinged neurons in the focal point would become over sensitized. Seizure activity spreads from there up into the temporal lobe where all the fun stuff is.
Yeah, I can feel the symptoms, symptoms like storm clouds on the horizon, just from writing this. I guess it’s time to hang up my writing shoes.
Man, I have no sense of time anymore…hour, day, date, even month sometimes, it is just gone. Just flowing along in the eternal present. I walk outside and everybody’s on a schedule, tied down tightly by 60’s–seconds and minutes, you get the idea–and dozens and two dozens and sevens and thirty or thirty ones. All these numbers you guys live in. I don’t. Years of epilepsy took care of that a long time ago (while her’s disappeared in a few endless minutes coding blue). It’s like I look out the picture window at another universe full of math and inside the two of us flow along in the present, segmented only by our circadian rhythms. I look at the fish tank with the two surviving fish (you might recall their killing spree) and I’m like them. They do their thing, having a ball–if there’s such a thing as a happy fish, it’s a zebra danio–their tiny striped lives managed only by watery circadian rhythms. They swim madly about, from impulse to impulse, and I write, mostly, and wonder where the time literally went, because it’s gone.
You know, I have to confess I found my corporate day gig much more rewarding than writing. I don’t mean financially rewarding–though it was, obviously–but more personally rewarding. Writing has always been so easy, and I have to go out of my way to make it challenging, I never really get much a feeling of accomplishment from it. I mean I like writing, and I like a lot of what I do write, but none of it knocks me out. It’s just pretty writing. And now that my brain is so worn away by epilepsy that I can no longer do what I used to do at my day gig, that I was so damn good at, that’s a drag. That’s when I really know I’m disabled. I run into people I used to work with and I don’t know what to say. Of course to them the writing is so much more exciting. They can’t imagine I’d rather have a day gig. That I’d rather not be a full time writer. But I suppose when a messed up epileptic manages to hold a day dig despite all the challenges, nearly all of which I was able to conceal pretty well from my co-workers, and when he is indeed is one of the very best in his company at that gig, that’s a genuine feeling of accomplishment. Making it in the normal people’s world is rare among my sort. Most epileptics can’t manage it. I not only managed it, I thrived at it. Alas, in the long run it’ll eat an epileptic up, as it did me, the mental strain and pace causes too much neural excitement and wears out the brain, burning out the synapses connecting the neurons. Brain functions slip away and you’re left cognitively crippled. Time disappears. Planning disappears. Papers pile up, mail goes unopened, bills are forgotten. Surrounded by things that never get finished you find yourself remembering all the things you used to be able to do but now can’t. So you write about it, and the words flow like liquid gold, so easily, too easily.
Damn. I’m at that stage of brain rot where I really can’t figure out my bills anymore. I literally can no longer do it. I used to be a master of that stuff, had everything worked out a year in advance. Now it’s like handing a stack of papers to a chimpanzee. About the only thing I can do anymore is write. I do that really well. Apparently what’s left of my grey matter has adapted to drive me mad with hypergraphia, writing at five a.m. when I ought to be in bed. Not that mind that much. I get a lot of writing done that way. It’s weird, though, losing my sense of time. I know today, but before today and after today is pretty close to non-existent. I don’t have a week, I have trouble remembering the day of that week, I know the month only by the days we get paid. I just live blissfully day to day, each morning utterly new, devoid of the previous day and oblivious of the next.
This past Monday (I remember it was Monday, though that feels like yesterday, or maybe the day before, and actually, some of my devoted fans may recall, I thought it was Friday, i.e. today) I was noticing I was feeling stiff. Everything stiff. Like it needed loosening up. So I figured I’d run some items down the stairs the recycle bins. The night was just a tinge chilly, the breeze carried the scent of night blooming flowers, the moon bathed the deck and steps in a pasty light. It was gorgeous. I stood there a minute soaking it all in. Suddenly I realized I had not been outside the house in a week. Well, I had, a couple times, out on the deck for moments, maybe a minute or two in total. A minute or two in a whole week. I hadn’t noticed. I was busy the whole time, never bored. I was reading and writing and following the madness in Washington, I did chores and cooked and washed dishes. I had done laundry. I watched a whole mess of Alfred Hitchcock movies. But I had never left the house. A whole week had gone by and I didn’t even realize it.
A friend of mine has an epileptic cousin. You’re so different from him, she once told me. You have a day job and a writing gig and go all over the place and seem so in charge of your life. Which was true. It was a struggle, the epileptic damage was already afflicting me, but I hid it well, complained little and managed to keep very busy and productive. Not like her cousin, she said, who mostly stays in his room all day and never goes anywhere. The poor spastic bastard, I thought, thank god I’m not one of them. Most of us are, helpless and housebound and out of sight. Not me, though. Not back then. Funny how things just sneak up on you.