My new and excruciatingly dull mellow epileptic lifestyle is so teutonically ordered that the creative Irish half is getting surly and bored and would really love some whiskey. Es tut mir leid Nelligan, that’s not in the budget this month. Nelligan loathes Herr Wahl and his perfect budget and organization and bill paying. Hates all the regularity and planning. Hates it with a fine Irish hate. But he’s been cut off. Every time he gets hold of the bank card bills bounce, things go awry, mere anarchy is loosed upon the household. It makes for good stories though. Or did, before the Kraut forced his way back in. Dass ist genug, Wahl commands, you’ll get us all spazzisch im dem Kopf mit your idiotische ramblings and he grabs the iPhone away before Nelligan can finish the
OK, I’m not writing a novel. I tried writing a novel once when a Good Samaritan stepped in and told me it was the worst thing he’d ever read. Which it was. So I write non-fiction. Or try, when the epilepsy doesn’t object.
For a couple weeks now I’ve been pushing myself with the writing, seeing what I can do without setting off my epilepsy. There’s been no fuzziness, no numbness in the limbs, very little stuttering and speech problems, no confusion, none of all the symptoms that make me everyone’s quirky special friend. I’m almost as dull as regular people.
But yesterday I stepped outside and the world was gorgeously two dimensional. The colors were vivid, even at dusk, the perspective flat. It looked like a Van Gogh painting, tho’ I suppose only an epileptic can see the epilepsy in a Van Gogh painting. Tonight it was even more vivid. I really can’t explain how beautiful it is, tho’ LSD has a similar effect. But it’s not a good sign. That Van Gogh effect is an epileptic aura, a prelude of the fun to come if I don’t cool it with all the renewed writing. I hadn’t had an aura since I stopped writing last year. Start up again and now I’ve got Vincent Van Gogh eyes.
Experiment over, I will follow my pal Kirk Silsbee’s admonition and take it slow, take it slow. I think in be bop, but I’ll have to write like a cool Stan Getz, if that makes any sense.
So this’ll be the last essay for a while. Now just jokes and insults and the occasional brief whining.
Anyway, a poet once said:
this was where Ray-
mundo Chandler drunk
and wrote and thunk
he oughta write some more.
(Facebook post of August, 2018)
Been slowly getting the brain used to writing more, to see if I can be a writer again without spazzing and all that. It’s the only thing I know how to do, after all. So I push it a little at a time. I used to be the macho epileptic guy, the machoest even, just pushing myself to the max because that is what gnarly epileptic writers do. Seizure? Fuck it. Let’s drink cup after cup of coffee and write all nite and see what happens. And it happened….those long long paragraphs full of crazy rhythms and swirling roller coaster narratives. The grooviest shit. But they took their toll. This new excruciatingly dull mellow epileptic lifestyle is not big on gnarliness. It’s more goat yoga and being nice. Neither of which I will actually do, but whatever. Anyway, that explains the occasional verbosity on Facebook. It’s not that I like any of you. Well, OK, maybe a little. Maybe a lot even, some of you. Most of you. All of you. Whatever. But I’m not gonna go all Facebook soft and cuddly. Leave a punk rock jazz critic a little pride, sheesh. To quote Lee Ving—well, maybe not. Nor Miles. This is a family website. Fuck.
Epilepsy snuck up on me a couple weeks ago and left the brain kinda beat up and wiped out. I probably wrote about that. I was writing about everything. Not a neurologically safe thing to do, writing. Gets everything all worked up, spitting sparks, burning up dendrites in a flash like singed hairs. You can tell the next couple days that things were damaged. You’re slower, and suddenly can’t remember things that you remembered fine the day before. So I’m avoiding writing for a few days, letting damage control reconnect what neurons are still in working order. There’s less each time. Not drooling yet, though, or saying inappropriate things. I was totally weirded out by groceries, however. Weird times. Well, they’re always weird times for spazzes. But weird times out there in the real world too. Fire and fury, the pretty news ladies were all saying, fire and fury, fire and fury. I sat on the couch watching the chatter for hours. At some point I reached my limit. Enough of the fire and fury already, I said. So I changed channels but there was Jimi Hendrix setting his guitar on fire and bashing it to smithereens in a psychedelic fury.
Saint Valentine, oh Saint Valentine.
It was a helluva decade, my fifties, some of the greatest ups in my life and some of the scariest lows. As it wore on, epilepsy inevitably began to dominate, the damage of a lifetime, and memory evaporated, and executive functions, and finally the ability to hold a job and even write articles. If you’re epileptic you know it’s gonna happen, you just hope it waits till later, much later, but it happens early, too early. Hell, it was giving me huge problems in my late forties, just when my life’s ups were becoming so up. I just hid it well, so I could keep working and getting writing gigs and not look like a spaced out fuck up. One of those.
But the real downside is the financial cost. You have no idea how expensive epilepsy is. Between the cost of medication and finance charges incurred taking out loans to buy the damn medicine–I couldn’t function without it, couldn’t drive, would be scary–it has cost us $40,000 in three years. And that was just for the medicine. Figure in the loss of income this past five years and the total cost gets into the hundreds of thousands. Hundreds of thousands of dollars. She’s already disabled. Still, we went from being a successful hard working middle class couple, completely self-made, to having little more than a roof over our heads and epilepsy incurred debts that suck up every loose penny. And you can’t get disability for epilepsy unless it is incredibly severe…and I’m not, I’ve just got a lifetime of damage that leaves me about as useful as a burnt out computer. You can’t get any assistance at all. No relief on utilities. No nothing. It’s just like being a normal person, except I can’t work.
So we enter our sixties flat broke but with a roof over our head. Rent control is such a blessing. But otherwise we have no idea what will happen next. The last decade was a series of surprises. You get fatalistic. I never was before. I am now. You just expect the worst and when it comes you shrug and deal with it, if you can. Though neither of us have the brain capacity anymore to deal with much of it. We just blink and wonder what to do.
Still, she just came back from the store with a steak and a six pack of beer and a bouquet of freshly picked flowers from the hillside, and there’s a mess of vegetables of all kinds from SuperKing and we’re going to have one helluva birthday feast. Life is good. I mean life is fucked up, even doomed, but it’s good, and we both take it a day at a time and stop and smell the roses.
Fifteen years ago, I worked for about thirty or so people, from executives on down, and I handled all their expense reports and purchases and you name it. I was so good at it that I was one of the employees that others would come to when they were stumped trying to figure out how to expense something. Executives from outside my department would come and ask for help. That was at Disney and I knew my shit. I was also, for a year or two, the one man purchasing department for Disney Online, when it was a start up. Millions of dollars of purchases went through me, I drew up the purchase orders, I figured out to set up the accounting for each, I got them approved. I remember setting up a database on Access to keep track of them. A schedule on Project. I had that purchasing down, too. Later, I was told by accounting that I processed more accounts payable invoices than the rest of the Walt Disney Internet Group put together. Tens of millions of dollars every couple months. That is in addition to all those expense reports and getting purchase orders processed–though I was no longer the purchasing department. There were several people by then doing what I had once done. I was a master of details and process and numbers.
This occurred to me a couple nights ago as I stared at our bank account and tried to figure out if we had enough cash on hand to cover rent. (We did.) I couldn’t remember what charges were outstanding. I couldn’t remember what we had paid or not. I had definitely forgotten to pay the DWP, I knew that, as they were threatening to shut us off. Time Warner Cable too. All these numbers swimming, these things I have no ability to calculate or schedule or understand. An infinitesimal fraction of what I was once a master of at Disney. It’s all beyond me now.
Losing your executive functions is a bitch. Abilities just disappear. Things everyone can do I can no longer do. Basic human being things. Those neurons burned away a long time ago. My temporal lobe, where all these things lie, is a beat up mess. A life time of small seizures, thousands of them, have done their damage. It’s like someone reached into the hard drive of the computer I’m writing on and 0-949uj1/’p23fh13wcde’p9dcalkjaZXA. Just like that.
A couple days ago was our wedding anniversary. The day before I was looking up at the digital sign above the bus driver, charmed, and it said November 28. November 28? Oh wow, November 29th is our anniversary. I said that aloud. She said yes it is and smiled. I said I had completely forgotten. I had never forgotten before. Not even almost forgotten. I always remembered. She smiled again. That’s OK, she said, we’ll have a nice dinner. You live with a husband long enough and you can see that his brain has been zapped away, and that he forgets things, but he means well.
I had never forgotten our anniversary before. I wondered what else I was forgetting. What else I would forget. And I sat there, as the bus lurched along, with the cold hollow suspicion that I was not going to able to take care of us by myself much longer.
(This is also posted on bricksbrain.com)
Did a rough calculation just now and figured that in the three decades or so since I was diagnosed as epileptic, I’ve taken over 50,000 pills. And that’s low-balling it. I don’t know if that’s cool, or gnarly, or just a helluva lot of pills.
Fifty thousand. Fifty times a thousand. Fifty thousands, really. It would have once been fifty thousands. When it finally got to the point that it was not a plural, not fifty separate thousands, it became the one fifty thousand. There went the plural, no more s, poof. Was that a mathematical poof or just a linguistic one I don’t know. Did some smart guy decide it was one thing, this fifty thousand, or did people just get lazy and drop the s the way people do? People are lazy speakers. I know I am. I can’t be bothered with consonants. Drop them all over the place, especially in the middle of words. D’s in particular. Just hint at the thing, glottalize it softly, can’t be bothered to stretch the tongue all the way to the teeth for that little rush of air off the palate that makes a d. What’s the point. People understand me anyway, mostly. Anyway, maybe that’s why fifty thousands is fifty thousand. Lazy tongues. But let’s say no, it was a mathematician. Some guy in a lab coat, a blackboard covered with x’s and y’s and no social graces whatsoever.
But back to fifty thousand. I know a guy that has fifty thousand records. He has as many records as I’ve taken pills. And I know a guy that has fifty thousand rubber bands in a big ball on his desk. It’s a really stupid hobby, but he has as many rubber bands as I’ve taken pills. And I know a guy that has fifty thousand dollars.
No, I don’t know anybody that has fifty thousand dollars. I mean fifty thousand dollars just hanging around. Fifty thousand dollars in a big fat wad in their pocket, like the Weenie King in The Palm Beach Story who gave a mess of them to Claudette Colbert who was standing in the shower in a skimpy bathrobe and driving the male half of the audience out there silently mad. There are people that have fifty thousand dollars like that, just fifty thousand dollars hanging around, but I don’t know who they are. I don’t know people who have a million dollars, or a billion, or a zillion dollars even. You don’t know these people socially unless you also have a million, billion or even zillion dollars. You can’t eat at the same restaurants, or go on the same vacations, or buy the same companies and lay off the same people. But I do know they have more dollars than I have taken pills, that’s for damn sure. I don’t even have to use my calculator to figure that out.
Then there’s that whole thing about a picture being worth a thousand words. They measured it. It’s a thousand words. I saw a photo album today that held fifty pictures. People pictures, cat pictures, baby pictures. I would rather have seen the fifty thousand word equivalent, as it was a really dull fifty pictures. And that would be as many words as I’ve taken pills. And words are something I can understand. Though I have written way over fifty thousand words. Ten times that easy, five hundred thousand words plus some. I figured that out once. MS Word made it feasible, put all those words together in a huge document. So huge it was cumbersome as a brontosaurus and took forever to open or close or edit even. I did a word search once that crashed my computer. I was afraid I was going to crash the Internet. It didn’t, and the world is safe, but now I’m on WordPress and though I like it, and that’s why you are reading this, it’s all fucked up, word wise counting wise. I just have to guess. I never guess about my pills.
Actually I’ve written way over ten times fifty stupid pictures in a boring photo album’s worth of words. Some are on this blog. Some are still in that brontosaurus of a word document. And there’s a whole mess of words tucked away in columns in the archives of the LA Weekly, maybe five times that stupid photo album’s worth of words. But the rest are hand written in a big box in the closet. Some are typed. Remember typewriters, those big clacking things that dinged? Ancient. Words that came from typewriters are made of ink, though the words you just read are made of electrons. This is the modern world, baby. I found an electric pencil sharpener at work, once. It was hidden in a supply drawer that had been locked up for year and was full of fossils. Carbon paper. White out. Rubber bands by the thousands. Boxes of pencils. Erasers in all shapes and sizes and colors. And that electric pencil sharpener. I took it out and put it on my desk. An intern asked what it was.
There’s also a bunch of words stuck in a hard drive from a computer that died a bad death, sparking and smouldering. Funny they aren’t words right now, just codes or whatever it is that sit in the memory chips, awaiting electrons that make them words again. Actually none of these words are words unless you open the file to look at them. I’ll finish this post finally, save, log out and go look at the news or pictures of ladies or something. None of these words exist then, until someone decides they really need to read what Brick says about pills. Press the link and voila!, words. And there’s all the words sitting in emails I never deleted, plus the ones I deleted are just memories of words, or would be if I remembered them. I don’t mostly. Who knows how many words disappeared over the years on work email accounts. Then there’s instant messaging and texting and twitter and Facebook. That must come to millions and million of words. I have no idea how many cat or baby pictures that amounts to.The calculator is way over there and I’m here typing, and it’d be just a wasting time exercise anyway. We were here to talk about pills.
My pills usually come in the mail. But sometimes I forget to re-order and have to go to the pharmacy to get more. It’s in Hollywood, the pharmacy. The last time I was there a man in a Santa hat came in, sat down and ate a sandwich. He didn’t want pills, he was just eating a sandwich.The next day I went there again, and there was a man wearing Mickey Mouse ears. He didn’t eat anything. He was in line wearing mouse ears, talked to the pharmacist in mouse ears, paid for his package in mouse ears, and disappeared out the door weaning mouse ears. He probably ate later. And I saw a lady there once who was so beautiful you couldn’t believe she was here in the wrong end of Hollywood. She wore a pink cowgirl hat and had legs for days that ended in cowgirl boots. I don’t think she was a real cowgirl, though. She was just bored, and sighed, and stared. People stared back. Mostly, though, the people waiting there don’t wear Santa hats or mouse ears or any kind of head gear of any sort. They just wait.
OK, time to take my pills.