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.
I see a lot of people lightly tossing the word senile around today. Senile was what they called Alzheimer’s before it had been officially diagnosed as a disease. There were other dementias that came under the heading of senility, the various neurodegenerative illnesses that sometime accompany old age, but Alzheimer’s is by far the most common, an epidemic becoming a pandemic. The number of cases is definitely increasing, doubling since the year 2000, though as with all neurodegenerative diseases Americans find it very uncomfortable to acknowledge. Indeed, it’s rarely mentioned anymore in celebrity obituaries. I remember that Mary Tyler Moore died of Alzheimer’s. That is about the only celebrity death from Alzheimer’s this year in which was mentioned in the media. It certainly was not the only one. You can figure that a full third of celebrities in their eighties or older either died of or with Alzheimer’s. So there is a disconnect in America in the awareness and recognition that Alzheimer’s kills millions of people annually, even when the incidence has doubled in the fifteen years. Researchers don’t know why it has doubled, but you’d think a galloping increase like that would send the nation into a panic. Instead it’s had the opposite effect. The more common it becomes, the more we pretend it isn’t there. People used to talk about Alzheimer’s, obituaries used to list it as the cause of death. You can find all kinds of lists of celebrities who died of Alzheimer’s yet oddly, they list very few from the past few years. It’s a secret condition now, embarrassing, shameful. And at the same time Americans stopped talking about Alzheimer’s you started seeing a lot of comments on Facebook about so and so (usually a celebrity or politician) being senile. It’s been a while since people have bandied the term senile about so freely. It used to be very politically incorrect. Because when you joke about someone being senile you are generally joking about them having Alzheimer’s. After all, senility is an obsolescent term for Alzheimer’s. But Alzheimer’s isn’t funny, we’ve all seen it, all known someone with it. And a lot of us will die of it. The longer people live, the more will die of or at least with Alzheimer’s. Most people live into their 80’s now, and one out of three of them will have Alzheimer’s. As other causes of death are reduced the number of people killed by complications from Alzheimer’s will only increase. That is the reality. Now I admit it’s not as funny as calling some old person senile. Not that I’m telling people what they can or cannot say. I make no judgments. Feel free to call old people senile. But it is funny when people who are so hypersensitive about other slurs make unintended Alzheimer’s slurs on Facebook. I read the comments and wonder how they forgot just what senility means. It’s almost like they’re senile.
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.
Losing your executive functions doesn’t hurt, it doesn’t make you less intelligent (well, maybe a little), and doesn’t seem to change the personality dramatically…but it is a pain in the ass. Sometimes a mild pain in the ass. Sometimes catastrophic….though you don’t really notice until one of the catastrophes hits you. Part of it is the time thing I keep talking about. I mean you retain your 24 hour sense of time–that seems to go much deeper than all the fancy brainage humans have laid on over the eons. Hell, plants have that sense of time. It’s the calendar you lose track of. That’s an add on we probably developed tens of thousands of years ago. Maybe earlier. It’s up there in the frontal lobe, apparently, and the parts of my frontal lobe that used to do wonders with calendars (and Microsoft Office and scheduling for a dozen bosses and complex multi-tasking and writing a weekly column for a major paper and never missing an issue in seven years) has been worn away by too much electro-chemical energy. (That’s what epilepsy is: too much electro-chemical energy.) But even more of a hassle is my inability to focus on things. Shit doesn’t get done. I am utterly mystified as to why it isn’t getting done. I have tried a zillion techniques to remind me that shit isn’t getting done. But the end result is shit not getting done. Even my writing has changed and all I seem to write are brief vignettes, snippets, small little essays. It’s pretty writing, sure, but it’s impossibly short. What can you do with it? But that’s how I think anymore, with (to quote our president) a few exceptions. But what especially disturbs me lately is that I can’t seem to focus on books. I was always the type that started a book and finished it in a few days or a couple weeks if it was long and turgid and dull, but I always finished it. Lately it takes forever, and I don’t always finish. I’m working on that too. I have so many books to read. I’m not making a lot of progress. Still, life is pleasant. It shouldn’t be, because actually everything is hopelessly fucked up, two brain damaged people incapable of doing what adults need to be able to do to survive in a complex world, but it’s never been more pleasant. We have friends who look out for us, and we keep life simple and spare. I get up and write. She reads. We watch old movies. She walks back from Trader Joes with a few groceries, some flowers and a snack. She makes dinner. I wash the dishes. It’s a daily routine but doesn’t feel that way since every day is completely new. Very little stress. Very little contact with the outside world. You look at people on the short bus and they always seem to be smiling and laughing.