I can’t read aloud anymore. A sentence, maybe another with brief stammers, then bam, word salad. That’s new, the word salad. Rather puts a damper on my plans of readings. Visions of readings, really, of muscular prose in dulcet radio tones, the phonemes like individual notes, words like chords, narratives as melody, rhythms rhythm, syncopating punctuation. Language is music and music is language. They run audibly through my head, these words, but stumble in the mouth. The jaw goes out of whack, electrons buzz like faulty wiring, the synapses synapsing all wrong, I can feel their confusion like low current electricity for an hour afterward, can feel it now, in fact, the jaw twitching. An epileptic’s life is an endless series of surprises at random times. new symptoms appearing instantly, new disabilities. All we can do is shrug them off. So I read these words knowing they’ll never be uttered aloud, not by me. I shrug. Whatever. Oh well. Damn.
Just spent the afternoon working out next month’s budget down to the estimated dollar amount we will have available by day. This is the way I handled our budget a decade ago. Two years ago I couldn’t even balance the bank account, let alone think ahead more than a day or two. The epilepsy recovery is coming along nicely. On the downside I can’t safely write more than a couple paragraphs, and multi-tasking makes my brain fritz and spark and sputter. But I’m not complaining. This is heaven.
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.
I remember the catatonic victims of the sleeping sickness epidemic on the Jersey Shore leftover from the early 20’s. Forty years later they sat frozen and staring like ancient mannequins in wheelchairs being pushed slowly along the boardwalk. Sometimes it was nurses in white uniforms pushing the wheelchairs. Sometimes it was just people, their children, apparently, or grandchildren. Some might have even remembered four decades before when this inanimate person they were pushing along was as animated as all the people on the boardwalk were now. The person in the chair just stared, frozen, never moving. People walked by, some unnoticing, some staring and whispering like we were doing. It was rude to stare, but it was the eeriest thing I’d ever seen when I was a kid. I couldn’t take my eyes off each of them. There must have been a convalescent home nearby. Maybe more than one. There had been thousands of people who’d been stricken with sleeping sickness in that part of New Jersey.
Encephalitis lethargica was the medical term for it. Victims could scarcely move. There were five million cases world wide in the 1920’s, a third of them died (in comparison the Spanish flu pandemic killed 10 to 20% of its victims.) Nearly all the rest recovered fully, except the small percentage who never unfroze. There were probably hundreds of those people in New Jersey, especially on the Jersey Shore, where the disease had clustered. No one knew why there were so many cases in that part of Jersey then, I have no idea how much more they know now. I read once that doctors theorized it might have been some bizarre after effect of the Spanish Flu that had swept the world a couple years before, like how you get shingles if you had chickenpox. Not everyone who had chickenpox gets shingles. Not everyone who got the Spanish flu came down later with encephalitis lethargica. Apparently it’s still unproven. All they know for sure is that it’s only seen in very rare instances anymore. No epidemics. It’s forgotten.
But when I saw Awakenings four decades later it brought all those memories back. A beautiful summer evening in Asbury Park. I was eight or nine or ten. A statue rolled by in a wheelchair. Then another. Are they dead, I asked. No, the poor things are alive, they just can’t move. Like they’re frozen? Yes, but look at their faces, my grandmother said. The one being wheeled past was smiling. I still remember that frozen, unlaughing smile. The eyes looked at me, through me. The hand waved, never moving.
Everybody on the Shore knew what they were. They got the sleeping sickness and never recovered, my grandmother whispered, Lord have mercy on them. I don’t think I heard it called encephalitis till years later, and I never knew their catatonia was a particularly tragic variant of Parkinson’s Disease till I read Oliver Sacks’ medical memoir. I just knew sleeping sickness came from a mosquito bite, though it didn’t. It was some viral thing. African Sleeping Sickness was passed on by a bite from a tse tse fly, and terrified folk wisdom assumed this sleeping sickness came from a mosquito bite, like yellow fever. A frightened public mixing up epidemics. I know I was terrified of being bitten by a mosquito and freezing and staring, but my mom said it didn’t happen anymore. My terror subsided and we moved to California and I never saw one of those profoundly paralyzed victims of encephalitis lethargica again. They became part of my collection of Jersey Shore memories with the elm trees and salt water taffy and the sad but funny bloated faces of puffer fish left way up the beach after a storm.
A lifetime later the memory is still vivid as I remember the people in their wheelchairs on the Asbury Park boardwalk. Watching them stare frozen as the summer crowds streamed past them, as the years streamed past them, as time itself streamed past them. I feel a dead chill inside. A ten year old’s quiet terror. Stop staring, my grandmother said.
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.
A reader of one of my blogs asked me what I do to prepare to write, how do I get in the mood, how do think up a piece ahead of time. I didn’t know what to tell him. All I do is start typing on the keyboard and the writing just happens. It’s never planned or thought out, I never sit down and think about what I’m going to write. It just gushes out. Everything you see is first draft as is, though sometimes I go back and tighten a sentence or two, but that’s pretty rare. The piece comes to a structurally logical conclusion, I hit post and forget about it. That is my writing method. The writing thing switches on and then switches off again. There’s almost no thinking on my part involved. It does its little thing in its corner of my brain and leaves the rest of me alone. If I Iet it run riot it gets too obtrusive and fucks shit up. But I let it out once a day or so. Two or three times a day and it sets off my epilepsy. So I leave it on a very short leash. A few hundred words at most. Hit the on switch, let it run for an hour or so and hit the off switch. That way both me and the hole in my brain where writing happens are happy. The hole gets to gush words, and I get to ignore it.
So I decided not to tell the guy anything.
Had the brilliant idea of taking the nighttime dose of my seizure drugs earlier and it’s totally messed up my sleep cycle. Apparently when you hit sixty your body rejects any change just out of spite. Get off my lawn, it’s yelling at me. Probably a Trump supporter, too.
Anyway, going to bed again. I think it just woke me up to watch Fox And Friends.