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
I’m reminded of the time many decades ago that I was smoking a joint with a pretty hippie chick at a reggae festival in Santa Barbara. We slipped back behind the stage, just the two of us, and hid in the bushes getting high. Real high. She had a fat baggie full of skunk weed and rolled big bomber joints with long psychedelically painted nails. We were so stoned and I wondered aloud how she gotten that stash past the really obnoxious security. They’d been searching everything and everybody at the gate. She laughed. I hid it in a well concealed place she said. Oh, like in your bra? I’m not wearing a bra she said and she gave a little wiggle. She wasn’t. We traded a joint back and forth. So how did you get it in then? She smiled. Have another hit, she said.
The only reason I remember that story is that I found a scrap of writing once from 1979 describing it. I have pretty massive memory loss from those days–way too many seizures–and have no direct memory of any of it. No idea who the girl was. I don’t know if we knew each other already or not. Or if we did anything more than lie about in the bushes getting stoned. And your guess on how she got the weed past the gate is as good as mine.
It haunts me a bit, this fragment of an afternoon back in 1979. Like a solitary page of an ancient papyrus, it’s all that remains of a story long vaporized into dust. Amnesia.
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.
Power’s been off and on, mostly off, all day here in our stretch of Silver Lake. Gotta love the DWP, delivering juice with all the intermittent excitement of a fourth world capital besieged or maybe Caracas on a bad day for socialism. I made dinner in the dark. Spilled milk. Didn’t cry. Ate in a candle lit room accompanied by our battery operated phonograph. I had listened to Chicago jazz all afternoon–found an extraordinary LP side of Pee Wee Russell, Vic Dickinson, Wild Bill Davison and Bud Freeman from the 1950’s I don’t think I’d ever listened to, with a riotous Muskrat Ramble at be bop tempo, just nuts. At one point I realized I’d listened to three LP’s worth of tracks none of which had been cut less than ninety years ago. An afternoon like that. Then the power came back on halfway through some late forties Ellington. Cat Anderson hit a high note and switched on all the lights. So I put the turntable away and reset all the clocks and started laundry and got online when Elmer Fudd at the DWP tripped over the extension cord again and the whole neighborhood was draped in dusk. As it lingered, ever darker, I lit candles and pulled out the record player again and switched to the two Bowie LPs I have left (I used to have a dozen, but they’re gone) and cringed at Kooks, as always. Then power came back on finally and I put the record player away and blew out the candles and was about to turn on the computer when Jerry Lewis at the DWP beat me to it by falling onto the main off switch with his foot stuck in a waste basket. Darkness again. The whole neighborhood enveloped in darkness. I sat in the living room in the dark and listened to distant light. A siren cut the stillness and coyotes howled and it was like the end of civilization, like Paris in the depth of the 14th century, beset by plague and war and brigands and famine, when wolves haunted the night time streets and snatched the unwary. Like that. Well, not quite like that. It was dark, though. So I lit more candles, pulled out the record player, and listened to the first Buzzcocks LP which I bought forty years ago next year, and it sounded gloriously low fi like it did on cheap punk rock record players in 1978, and I sat in the dark and remembered what a great album it had been to fuck to, but never mind. The second album sounded even better, incredibly creative, and just as Late For the Train reached its swirling, soaring, pounding finish the power came back on, lights on everywhere. Damn, someone at the DWP has groovy timing.
And here comes the epilepsy, a buzzing numbing fog. I forgot.
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.