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.
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.
One of the more annoying things about having your executive functions rot away is how you keep forgetting how to do things you’ve done a zillion times. I’ve blogged thousands of times on WordPress by now, but I still forget how to do the most basic things on it. Simple little tasks that ordinarily took a few quick steps, just a couple seconds. Now I just stare at the screen, and if I get too stuck I start to get numb all over, then queasy, then realize the epilepsy is totally fucking with me, and soon I find myself writing about what I was trying to do it instead of actually doing it. Jesus Christ, a half century of this shit. You’d think I’d be used to it by now. I need a smartphone but dread getting one as I’ll be so bewildered by it, it’ll be this little screen that opens onto a multi-dimensional warren of a zillion options, each requiring the ability to remember a few simple steps. Sounds so easy. One man’s app is another man’s seizure.
Awaiting our tax refund, I get a letter from the IRS. They are holding it until I file for not one but two years I never filed for. You’re joking I thought (as if the IRS ever joked.) Nope. I found the undone taxes. Looks like I had filed extensions, twice, and then forgotten, twice. Have done them since them, every year, early. Go figure.
I remember now, though, that I did miss a year before these two and then filed two years in one. Not sure how that happened but it happened. It had never happened before. Got a refund on both so there was no penalty. Looks like the following two years I flaked. No idea what the result will be. Not looking like a refund, though.
This is just another of those things that fell through a hole in the brain (actually I do have a hole in the brain, literally, hence all this). Alas, the world doesn’t work with holes in brains. It’s made up of whole brained people who don’t mess up, and people whose memories haven’t been erased clean in five minutes like a blackboard. We were always exceptionally good about taxes. Keeping great records, timely filing, being honest. But in 2006 I had a hellish year of small seizures that went on for months and months, unrelenting, and she had a blood infection in 2008 that stopped her heart and left her essentially dead for five minutes. After that everything changed. Some things instantly, like her amnesia and vaporized executive functions. Some things slowly, over the following decade, like my disintegrating memory and executive functions. Either way, you’d be amazed at how much you can forget. And how, once forgotten, it’s like it never happened at all, until the IRS send you a nasty letter, or someone bangs on the door with a summons for a bill you can’t remember. Or you find out they’re going to haul you into jail because you forgot to mail in your jury form. Or the internet disappears, unpaid for. I knew I forgot something, I always say. Though most of the time I didn’t know I forgot anything. That’s the beauty of amnesia.
I was just flipping through Seized, by Eve La Plante, probably the only real book ever done on Temporal Lobe Epilepsy. I actually have Frontal Lobe Epilepsy, that’s where the hole is, but most of the electrical storms caused by that hole sweep across the temporal lobe like a low pressure front on The Weather Channel, causing all sorts of weirdness and memory loss and zapping executive functions all to hell and reducing my time frame to a few days from now and not much more. Slowly the brain deteriorates, neurons burned out and destroyed. You’d be amazed what you lose with it, like remembering to file taxes. Anyway, in the section of the book called “Ordinary People” it discusses three people. The first was a guy who was messed up but still functioning, working, very busy, just a little odd. I remember how in 2006 that was me. The next subject was a lady who’d been successful in business, but epilepsy had messed her up. There was a paragraph in there about what a mess her finances had become, even on her executive salary, with money misplaced, bills unpaid, checks bouncing, utilities turned off, debt collectors calling, the IRS angry. She had a drawer full of unopened mail. She was an organizational disaster. She’d never been good at handling money even before her epilepsy, and look at her now. Damn, I thought, glad I ain’t her. I could not even imagine what it was like to be her. I was super organized, super disciplined. I was on top of things.
Well guess what. I ain’t that first guy at all anymore. Now I’m her. And unlike her I had been good at our finances. I remember a month long road trip we took across country in 2010. Not only was every single bill I worked out a cost estimation of the trip ahead of time. When we got back I went through all the receipts and bank statements and realized I had been off only a couple hundred dollars, and that was because the price of gas had fallen while we were driving ten thousand miles. Everything else–lodging, food, etc.–was remarkably close to what I had figured. And this was a trip that we sort of winged the route on. No hard and fast plans. Somehow, I had worked that all into my calculations. I couldn’t even do that for a day trip now.
(I’m afraid to read about that the third person. I remember it was weird. Very weird. She played the violin in the symphony and would go on these weird and disturbing adult oriented Through the Looking Glass adventures. It was a rare case. By the way, Lewis Carroll was epileptic. Never Never Land is where he’d go in his seizures.)
Nice to know, however, that screwing up one’s taxes by forgetting them is just another symptom. You go to your neurologist, tell him your sad story, and it’s just the tenth similar story he’s heard that day. But it’s jarring to think of us ten years ago, though, and us now. I can actually think back if it’s longer term. (Long term memory is less affected than more recent memory, and short term is the most ephemeral of all, ask any pot smoker.) Between my wife dying for five minutes and having her memory obliterated and my brain being fried to hell by who knows how many little seizures, we’re like ten year olds trying to play grown ups with the bills. What a disaster this is. What a decade this has been. I wonder what this next decade will bring. If I could see more than a week into it I’d probably be concerned.
I used to be good at so many things, and all I can do now is write. So I wrote this.
My essays keep getting shorter and shorter. Executive functions slipping away neuron by neuron. Everything I do now is in immediate bursts. Too long and I seem to forget what it was I was doing. I sit surrounded by projects I forgot to complete. All around me are piles of things half done or undone. It’s a pleasant life, clockless and calendar free, but every once in a while I remember that I could once stay focused for days or weeks at a time. Now I live in the now. Carpe diem, I guess.