I suppose it’s the writer in me but I doubt many of you find yourself tweaking old Facebook posts that no one has looked at in months nor will ever look at again. Though whether anyone actually reads anything is not the point, it’s the shape and dimensions of the language. It is always a little unnerving for me when someone comes up and talks to me about something I wrote, as if what I wrote actually existed in the real world, instead of inside the brain where language is, sort of mind’s eye visible, sort of tactile, as if you could feel it in your nerve-rich finger tips, or sort of beyond the senses, just words representing non-verbal knowledge, bits of information, patterns of neurons, the electro chemical energy that sparks thought, that is thought, that is beneath thought even, that is awareness, if even that, what links us to slime molds and not to stones. How it differs from the rocks.
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.
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.
I have a pretty good idea of the time. Our internal clocks are very, very ancient and keep us aware of about when it is in the day. And we have calendars all over the house and if I look at them I can see the month. But man, my natural state is to have no idea what day of the week it is, or the date of the month. The calendars don’t help. The one I am looking at right now has a mother bear and three baby bears and beneath them thirty one days, each day a perfect little square. I don’t think I am supposed to see the days as perfect little squares. They are supposed to be numbered concepts. But the concepts seem to be missing and I have to keep asking my wife what day it is or what the date is. It’s kind of blissful, actually, this timelessness, but I’ve never been a fan of bliss. I was never a bliss kind of guy. So it’s a struggle not to disappear into this blissful pit, this little brain damaged heaven up here in the hills of Silver Lake. It’s not a battle I am winning. The timeless bliss is unrelenting, like a tide that comes in and never goes out again. And to think there are people who do yoga with goats to get where I am.
Losing my arithmetic skills is driving me nuts. I calculate things in my head, then when I use a calculator later I discover that my calculations were completely wrong. You’d me amazed at how often we make calculations in our heads, even rough calculations, and you don’t notice it until you discover that your ability to do so is badly flawed. Suddenly the running tallies I keep in my head are nowhere near accurate. We live in an arithmetical world, adding and subtracting all the time. I can’t do it well. My wife can’t do it at all. Money runs out when I didn’t think it would run out, checks bounce that I swore had sufficient funds. It’s a creepy feeling. Basic human skills, the things that make people people and not chimpanzees, and once made us homo sapiens and not homo neanderthals, they’re slipping away in a mental mist.
Combine that with falling off the calendar, days just running one after another without months or weeks or years, and I’m having severe doubts about our ability to run our own affairs. If it were only one of us it wouldn’t be an issue. But we won the big wazoo, both husband and wife with the same brain damage but from entirely different causes. What are the odds, an old boss of mine used to say, what are the odds. Then he went nuts, stark raving bonkers, and they had to let him go. Brains are fragile, funny things. Think I’ll go hide myself in a book and worry about all this tomorrow.