It is really funny how messed up things get as your executive functions slip away. You look at things, realize you used to be able to keep all that straight and organized and systemic, and wonder how. You pile a pile of them in different piles. Then you got into the kitchen to make a cup of coffee, start talking to the wife, and busy your self on some tangent. Laundry, maybe, the dishes, an old film noir, an essay, a book. Hours later there’s a messy couple stacks of things that you forgot what it was you were doing with, and you put them back into the single pile from which they came. Mañana, mañana.
Category Archives: epilepsy
Tuesday something
(written a couple years ago….)
It’s Friday morning, and here’s the old people medical news, plus a ten pen cent discount. Good article in AARP magazine about the meds you take and why you can’t remember anything. Luckily for me both my anti-seizure drugs (that sounds much nicer than anti-convulsants) are listed so now I have twice the excuse for not remembering your name or what I promised or where I am. Plus the good thing is that I have twice the excuse for not remembering your name or what I promised or where I am. And here’s an article about the meds you take and why you can’t remember anything. Thank god it’s Thursday. Or Tuesday. Though it doesn’t look like Belgium. Or Weld, for that matter. And I read somewhere that some meds affect your memory.
I was going to say something.
Memory! That’s it. And you thought I couldn’t remember anything.
Fifteen seizure pills a day
I take fifteen seizure pills a day. Without those fifteen pills a day, I couldn’t go out in public, I’d be potentially dangerous, and it is highly doubtful I would have any friends. Indeed, without those fifteen pills a day I would in all likelihood have to be institutionalized. Not because I am crazy–I seem to be a lot saner than many people I know–but because I would be so wracked by seizures and all their side effects that the world and all you people would be too much for me to handle, and certainly vice versa. Without seizure drugs I would have to be on very heavy sedation, though that would do nothing to keep me from having spectacular grand mal seizures in my sleep. Without fifteen seizure pills a day I would be the creepy guy in the back of the bus, scaring all the other passengers. Not that it is likely I would ever get near a bus.
Without fifteen seizure pills a day the brain damage from a lifetime of uncontrolled seizures would have been so extensive by now that I would probably appear to be quite mentally retarded. Without fifteen seizure pills a day my memory, what remained of it, would be a refuse heap of random recollections. Without fifteen seizure pills a day I would either not be writing this, or I would be writing things just like this tens of thousands of words long every single day and you would have unfriended me long ago.
The funny thing about being epileptic is if you ever happen to mention any of the effects and symptoms of it everyone tells you that they get that too, indeed everybody gets that. But then they only think that because they have never seen me unmedicated. Without vast amounts of anti-seizure medications coursing through my veins 24/7, none of you but my family would even know I exist.
And that is how I am different from almost all of you.
Epileptics are asked by advocates all the time to talk about their epilepsy. I don’t like to talk about my epilepsy. People weird out. It’s like talking about your syphilis. Epilepsy is not one of the hipper maladies. But a neurologist said I ought to write about it.
So I did.
Music
One of the more fascinating, if unsettling, things about a neurodegenerative disease is how parts of your personality slip away unnoticed as synapses wilt and whole brains parts shrivel. These past several years music slowly stopped being a vital part of my life. I find myself going days, even weeks, without listening to it except in a car. I have a huge collection of recordings–vinyl, cassette, CD, digital–I barely touch anymore. I fear I could sell them all and miss only the mementos. And I scarcely ever write about music anymore. There was a time I did so fanatically. That time has gone. Somewhere in my head, in the temporal lobe or frontal lobe or both, enough neurons have been singed to make music less important to me than, say, books or old movies. I love the music people and I love the excitement of skilled improvisation, but very little else moves me anymore like it once did. I thought a couple years ago that maybe it was just a spell, maybe being a jazz critic had burned me out, but no. It’s permanent. I still love music, but it’s no longer essential. I still hear it all the time, tunes going through my head, but somehow the emotional connection has faded. Like it’s still up in my frontal lobe, intellectually, but the feel and soul of it in my temporal lobe has shriveled away with my bruised and battered hippocampus. I wish this bothered me more, but it doesn’t. Still, I wonder with a chill what, in ten years time, will also have faded away in significance.
ASMR
Dimensions
Not being able to plan or foresee more than a couple days, all this H. sapien sapien grey matter stuck inside executive functions sometimes no more advanced than H. habilis. I thought about writing a whole essay on that a couple days ago, spun the thing out in my head beautifully, but it fizzled away and now all that remains is this, proving my point.
Someone asked me last night what I was doing next weekend and I stared at them dumbfounded, next weekend doesn’t even exist yet, it’s some vague shadowy future thing. Behind her the hills were a two dimensional backdrop with shimmering lights, in front of them a string of telephone polls vaguely three dimensional, while she was alive and fully formed and shot through with dimensions. I tried to listen to what she was saying but the vista was so gorgeous I couldn’t help but marvel at it.
Time to go home, I said. She gave me a hug and a kiss on the cheek, her lips warm and vivid. Touch is three dimensions, alive. Outside on the sidewalk, in the dark, the trees were layered against the city behind it, like a painting on a wall.
Tears
Someone mentioned a good cry she’d had. How it had been just what she needed. The tears flowed and afterward she felt fresh and renewed, as after a spring rain.
I think I’ve cried for a total of two or three minutes in thirty years. Just doesn’t come easily to some folks, I guess. Maybe a minute when my dad died, not at all when my mother died, as she’d told me not to. Once I burst out in tears like an idiot putting down a cat, one of the most embarrassing moments in my life that was. It passed in five or ten seconds and the cat died peacefully in my arms. I cried once for a few seconds when I thought my wife was dying and for maybe 30 seconds, just bawling, when I was misinformed that while she had lived she was severely brain damaged. I didn’t cry more about it, she’s an Indian and they don’t cry much, don’t believe in it, and too much grief seemed wrong. An epileptic learns never to trust his emotions, what for you all might be genuine for us is probably just a simple partial seizure. Life has been hard, pretty damn hard, but crying never seemed to do the trick. Laughing, though, works like a charm. Laughing I believe in.
Vincent Van Gogh
(2015)
Yet another theory on Vincent Van Gogh, this time from an astrophysicist. Van Gogh’s Turbulent Mind Captured Turbulence. “The painter’s creations during his blue period mirrored nature’s turbulent flows, as if his mind somehow tapped into a universal archetype, says astrophysicist Marcelo Gleiser.” OK. Some sort of astrophysical mysticism. But while tapping into the universal archetype is cool, Van Gogh was very epileptic, and a lot of his technique was simply his painting the visual effects of his epilepsy. The auras around light (like the moon and stars in Starry Night), which can vibrate or pulsate, and the flattening effect, with objects appearing to be separated from the things behind them, as in the tree in the painting. To an epileptic, objects close up will appear three dimensional, objects further back will have less depth and objects further back appear flat, like a backdrop. It’s like a crowd scene shot on a soundstage in old film, with real people up front, cut outs of people behind them, and paintings of people on the backdrop furthest back. It’s actually a pretty cool effect. The first time I ever stood right in front of a Van Gogh–Irises, at the Getty–that is what I saw. The gradations of dimension. Vividly three dimensional in front. Less depth behind. And further back little or no depth at all. I was startled at how epileptic it was. It was like I’d missed a dose of my meds. Pretty cool.
On evenings that I have nothing to do, if the effect creeps up on me I’ll sit out on the deck and the view goes very Van Gogh–not like Starry Night, but earlier, before his temporal lobe seizures got out of control. It’s the most gorgeous thing, one of the symptoms of epilepsy that I love. I’ll sit out there and just look at all the beauty of it for an hour or so, and wait a bit before taking my pills. Once they hit the bloodstream it all goes three dimensional again, a shame, but it’s better that way. But you all don’t know what you’re missing. If you ever dropped acid you’ve seen some of the same effect, though you thought you were a Greek god at the time.
Sometimes I’ll take advantage of that state to write. Push off taking those pills a bit. It’s an old epileptic writer’s trick. There’s an intensity to writing epileptic. You get lost in it. Hours can pass. Sometimes it can get out of control and the writing comes out like Neil Cassidy on speed, unusable. Sometimes it’ll take me so close to the bone I’ll begin trembling and feel physically ill. I don’t like to let that happen. And sometimes it comes out just right. A little edgy, maybe, a little weird even, but just right. Still, I don’t recommend it as a writing technique. But it does give me a glimpse into Dostoevsky’s muse. Or what Van Gogh might have been seeing.
You hear a lot about Van Gogh’s use of absinthe. As if absinthe was some crazy elixir, like LSD. But it’s basically alcohol, a very high octane alcohol, like white lightning or Rumplemintz. You drink enough of that kind of stuff you’ll be messed up, epileptic or not. Of course, it would likely have very deleterious effects on epilepsy, exacerbating it severely. Our wiring is thinly sheathed, our neurons very susceptible to firing out of sync, or too often, or firing when they shouldn’t be firing. Doesn’t take much too short us out. Any stimulus is a potential risk. And in Van Gogh’s case, uncontrolled by medication as it was, any booze in excess probably messed him up badly. Caffeine could have too. Or any drugs he was doing. Even cigars. Because stimulants–any stimulants–can exacerbate epilepsy. And Van Gogh’s main problem was he was very epileptic. That’s what he was diagnosed as during his lifetime, that is what he was being treated for, that is what he was being medicated for, though the meds at the time were only partially effective. There’s a terrific chapter on him in the book Seized by Eve LaPlante. Van Gogh was classically epileptic, with a classically epileptic inter-ictal personality. That is, he was different even between seizures. And he had a lot of seizures. Not big seizures, so much, but lots and lots of lesser seizures. What are commonly called petit mals. You have a lot of those and they will mess you up. I’ve been there. It’s not easy. I can’t imagine living that way without effective medication. I’d be in a 24/7 epileptic world. I’d be unmanageable, full of rage and inspiration and moments of brilliance and many more of embarrassment. I’d be writing every conscious moment. I’d be falling madly in love incessantly. I’d drive people nuts with chatter. I wouldn’t want to sit next to me on a bus. I’d be a lot like the descriptions you read of Vincent Van Gogh. I don’t mean the talent, obviously, or the genius or any of that. I mean the personality. The epileptic personality. Temporal lobe epileptics (or frontal lobe epileptics whose seizure activity extends into the temporal lobe) are all remarkably similar. Do a lot of the same crazy things. And Vincent Van Gogh was as epileptic as they come. Textbook. He wasn’t crazy, or delusional, or mad. He was just really tore up by his virtually uncontrolled temporal lobe epilepsy. You look at his paintings chronologically, you can it increasing. Something was making it worse. The visual effects he recorded are intense. Obviously the concentration required in painting is bad for him–ideally, an epileptic should do as little as possible–and his frustration is palpable. He would have known what the problem was. Suicide is not an uncommon cure.
I’m not sure why art historians refuse to label Van Gogh’s malady as epilepsy. I guess there’s a deeply rooted stigma about epilepsy and a romance to madness. Whatever. But Van Gogh was as messed up as Dostoevsky who was also classically epileptic. Yet today, neither would ever have been the artists they were, as their distinctive art was so based on badly controlled temporal/frontal lobe seizure activity. Pills would ruin that. They would have been much happier, written shorter books, painted fewer paintings. But the live wire creativity that goes with uncontrolled epilepsy, that would never have happened. We might have Irises, but no Starry Night. Maybe a Crime and Punishment, but no Brothers Karamazov. I think about Van Gogh and Dostoevsky often, and I pity them, a little. They were messed up. Tragically so. Yet being messed up is what turned them into such extraordinary figures. An extraordinary painter, and astonishing novelist. There’s a bizarre tendency in modern western civilization to disprove anyone famous was epileptic. There is scarcely an epileptic of note for whom experts haven’t tried to erase the shame of the falling sickness. They’re forever looking for some other explanation. Dostoevsky made that impossible in his case with his vivid descriptions of seizures throughout his novels. Van Gogh, though, has been the victim of quite literally dozens of theories of his “madness”. Some are feasible, others unlikely. Sometimes very unlikely. And now a scientist has him metaphysically in tune with the mathematics of the universe. How this works, who knows. Is there any science behind this? Absolutely not. It is complete fantasy. The truth is that Vincent Van Gogh had epilepsy, and his art was an epileptic’s eye view of the world.
Hypergraphia
Funny thing, epilepsy, its demands pretty much control your life. Especially when you suddenly can’t take one of your meds for a week. This blog was put on hold…I stayed in, low stress, no driving, taking too much of the other pill (It jacks up testosterone levels…how’s that for a side effect?) and watching comedies all week. Laughter, as Readers Digest used to say in bathrooms all across America, is the best medicine.
I also avoided writing. Writing and epilepsy are interlinked in me, the hole in my brain is right smack in the language center, the neurons are all crazy there, abuzz with excess electro-chemical energy, making words and sentences and chatter come out in torrents. You learn to contain the chatter and get a handle on the torrent of prose. I do have a couple pieces on the blog somewhere that are pure epileptic energy, endless paragraphs, ideas whipping about with near Brownian motion. I read them now, thoroughly medicated, and they look nuts. A pal of mine loves the stuff, though. Reads like a beatnik on speed writing Roman history, he said. I assume it was a compliment. Inevitably, though, epileptic writing leaves me sick–literally nauseous, dazed, out of it. A Sonny Rollins review once put me to bed it left me so ill. I feel like that and wonder how the hell Dostoevsky managed so many perfect novels, each as long as the Manhattan phone book. The poor bastard must have been sick all the time. I know I’ve avoided writing another piece like that Sonny review. If I feel myself getting that deep I pull back, make a wisecrack, take it down a notch or two in intensity. I don’t like to write myself sick.
Anyway, on Tuesday I was finally able to take Tegretol again. It’s the champagne of bottled medicines, you know, quite the luxury at over three bucks a pill. Within a couple hours I could feel it, in the long neurons that run the length of our arms and legs. It’s like they mellow out. That’s what Tegretol does, it settles down the neurons, or settles down their synapses anyway, which spark and cause the potassium in the neuron (aka the nerve cell) to flip sides and fire the synapse that sparks the next neuron to keep the impulse going. Too much of this activity you seize, not enough, say to your heart muscle, you die. Tegretol keeps everything at a sweet medium.
We drove around doing a bunch of chores on Tuesday (I’d really missed driving) and once our tasks were out of the way I sat down at the computer and began writing. And writing. And writing. All these pent up words came pouring out. I just couldn’t stop writing. I kept returning to my desk and out popped another story. I was like a blueballed teenager in a room full of cheerleaders, frantically releasing what had been pent up for too long. Just writing and writing, sometimes all night long into the morning. A few hours sleep and then back at it. Hell, that’s what this piece is. Just some silly essay about an epileptic’s hypergraphic world, in case you were wondering where the hell all these stories are coming from, not that any of you actually were. This is just writing for its own sake. That hole in my brain has a strange power over me sometimes. But it’s been there as long as I’ve been alive, so I’m used to it. Consider it a blessing, a reader told me. No, I said, I consider it a pain in the ass. And then I wrote about it.
Stutter
Damn Lamictal woke me up again. That’s the epilepsy med that increases testosterone, and apparently gnarly dudes don’t sleep. The other seizure med I take, carbamazepine, just makes me stutter incoherently on occasion. The stutter used to be really bad. The side effect of the carbamazepine combined with speech problems caused by the epilepsy itself and I’d get stuck on sounds and couldn’t say them no matter what happened. The voiceless “th” sound–as is thistle–would invariably trip me up and I’d be th-th-th-th-th-th-th-th….sounding like a leaking air compressor. The ladies thought it was the most darling thing ever, the big giant macho dude with the cutest stutter. I’d turn red with frustration and embarrassment. That’s ok, they’d invariably say. Then they said awwww. God I hated those awwwws. But women could also invariably understand what I was trying to say. It would sound like gibberish even to me, yet they could understand it. I assumed it was the baby talk instinct, and I was just some big dude making baby talk. They’d smile. Awwww.
The reactions of the guys at work were funnier. I don’t know if it was the extra testosterone or what, but most of them would be really meek around me. Hesitant. A tad obsequious. Not all, and certainly not the alpha males. Just the nebbish types, who, in an office, is an awful lot of them. I was the big gnarly dude in the office. But when I started stammering they couldn’t figure it out at all. Men can’t speak baby talk. To us a goo goo is a goo goo. A stammer just gibberish. They’d come up to me in the hallway with just the hint of a kowtow and say something friendly. I’d look down at them and start stammering. They’d freeze. Their expressions were priceless. They had no idea what I was trying to say, but it probably meant I was going to hurt them. They’d scurry off to the safety of their cubicles. Awwww.

