Category Archives: epilepsy

Adding and subtracting

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Losing my arithmetic skills is driving me nuts. I calculate things in my head, then when I use a calculator later I discover that my calculations were completely wrong. You’d me amazed at how often we make calculations in our heads, even rough calculations, and you don’t notice it until you discover that your ability to do so is badly flawed. Suddenly the running tallies I keep in my head are nowhere near accurate. We live in an arithmetical world, adding and subtracting all the time. I can’t do it well. My wife can’t do it at all. Money runs out when I didn’t think it would run out, checks bounce that I swore had sufficient funds. It’s a creepy feeling. Basic human skills, the things that make people people and not chimpanzees, and once made us homo sapiens and not homo neanderthals, they’re slipping away in a mental mist.

Combine that with falling off the calendar, days just running one after another without months or weeks or years, and I’m having severe doubts about our ability to run our own affairs. If it were only one of us it wouldn’t be an issue. But we won the big wazoo, both husband and wife with the same brain damage but from entirely different causes. What are the odds, an old boss of mine used to say, what are the odds. Then he went nuts, stark raving bonkers, and they had to let him go. Brains are fragile, funny things. Think I’ll go hide myself in a book and worry about all this tomorrow.

Living timelessly

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Man, not only do I keep forgetting what day of the week it is, I can never remember the day of the month, and sometimes what month it is, and even season. But I’ve been adjusting. I have a calendar right by my desk in the office here that I stare at every once in a while, which helps a little. At least it’s more decipherable than the Aztec one on the wall above it. But lately I’ve been losing track of time a lot. Like every day. Like maybe more often than not. I sort of exist clocklessly. All the clocks in our place are off by several minutes, none the same as the other. I just noticed this. None of them are synched up. There were two clocks in the kitchen and they were eight minutes apart, and neither were correct. All of our clocks used to be exactly on time. Now which ever clock we happen to be looking at, that is the time until we look at another clock and it becomes the time. I just noticed that my pocket watch doesn’t work at all. I can’t remember the last time I ever looked at it. I lost my cell phone so don’t have that as a time piece either. My internal clock seems utterly random. I’m living timelessly.

I’m sure we each several internal clocks, our body and brain probably have all kinds of ways of measuring time. But the conscious perception of time’s passing, that seems to be missing. Which isn’t actually a problem on my own. In here, in the house, time goes whichever way it does. Doesn’t matter too much. But out there, with all you people and your clocks and schedules and timetables and deadlines and office hours, that’s increasingly the challenge. I used to be one of you, too. A busy, hectic schedule, timed to the minute. Now I pass through time like I’m in another multiverse, ethereal and time free, while yours passes through mine measured right down to the second. We talk, we interact, we hug, we kiss, we shake hands, we laugh at the same jokes, whatever, and we then part again, you in the tightly measured real world and me in my world of words and perceptions. I remember being one of you guys. I just can’t remember how.

Taxing memory remembering taxes

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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.

Stutter

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(2006–My epilepsy symptoms had changed and suddenly, aged 49, I developed a stutter….)

I keep getting hung up on if. We can do that if-f-f-f-f-f-f-f-f-f-f-f-f-f-f-f-f-f-f-f…. Brain rapidly goes through its list of alternatives to if. On the other hand. On the oth-th-th-th-th-th-th-th-th-th-th-th-th-th-th-th-th-th-th….. By that point my wife has left the room. I stop trying to say it and just think it, with nary a mental stutter. I have a beautiful voice when I think.

Carpe diem

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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.

How my epilepsy nearly landed me in jail

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Neurology appointment this morning. Nice to know that my steady cognitive decline, deteriorating executive functions and increasing memory loss are normal for an epileptic my age. I knew that, of course, and accepted my fate ages ago–it kind of goes with the whole epilepsy gig–but it’s nice to hear a doctor say it.

Did I mention how epilepsy nearly put me in jail on Monday? Got a series of phone calls last Monday–on King Day, a legal holiday–from a sergeant and lieutenant from the LA County Sheriffs. Call back at your convenience, they said. I did. They were very nice. You missed grand jury duty, they said. I did? Yes, we mailed you several times. You did? Yes, you didn’t receive them? I said I didn’t remember. Let’s just say you did not receive them, he said–DNR. But you need to know that the judge issued four complaints against you…and he rattled off an endless series of numbers. The most critical, he said, was Failure to Appear. That needs to be taken care of today. Otherwise we have to send an officer to your address. The others–all I remember was Contempt of Court–were civil complaints. We don’t arrest people for civil complaints, he said. In any case, each was $495, payable by MoneyPak only. I had no idea what MoneyPak was. He explained. Our neighbor ran us over to Ralphs and bought one. Cash only. We had enough cash on us for one. It was a legal holiday. No banks open, so we couldn’t get anymore money. The Sheriffs wanted to go home early so they called me and we took care of the Failure to Appear over the phone. It was just like running a credit card. You’ve been approved, he said. I can’t be arrested now? No, you cannot be, Mr. Wahl.

But I have those three other $495 bail tickets to pay for, before my trial date. Apparently I have a trial date. I don’t know when. But that’s when I get back the $1980 in bail (once I figure out how the hell to come up with the other three $495’s first.) What happens at my trial I have no idea. I suppose he could put me in jail for contempt of court. Or fine me a few grand. Whatever. He’s a judge. Whoever he is.

I mentioned this was all due to epilepsy. Well, I’ve had epilepsy so long now–my first big seizure was over forty years ago, the smaller stuff goes back over fifty–that my brain has been badly damaged from all the excess electro-chemical activity. Burned everything out. My amygdala is beat up and misshapen and shrunken. Neuronal pathways burned out a long time ago. Entire parts of my frontal lobe are no longer accessible. This is standard operating procedure for older epileptics. And as such, I forget all kinds of stuff, don’t understand more stuff, and can’t schedule anything mentally because I can’t see ahead more than a day or two. Anything after that, like next weekend or three Tuesdays from now or your birthday, is some blurry, vague future thing. It’s as if a million years of homo sapien evolution in my brain just up and disappeared and as far as time perception goes I’m back with the chimps now. And as my wife Fyl, of course, also has diminished executive functions and a blasted memory from being dead for five minutes back in 2008, this means that between us we have the executive functions of a child. Imagine turning over your financial planning to your seven year old. That is us.

Apparently I was getting increasingly angry mail from the Grand Jury. Perhaps I opened them. Perhaps I didn’t. I cannot remember. No matter, I doubtless laid them in a pile of other mail I had also either opened or didn’t. If I planned on responding to these summons, which I assume I would have, I apparently forgot within a day or two. Eventually, before Christmas, I went on a shredding tear. We have this great shredder. I assume the jury summons, even the angry scary threatening ones, went into the shredder and into a plastic bag and into the recycle bin and now sit in a big hole somewhere that eventually will be a city park. Perhaps I will visit there someday, sitting under the shade of a tree, and have a vague memory of how I nearly went to jail one Martin Luther King Day because I am such a fucking spazz.

I remember talking to a lawyer once who specialized in epilepsy cases. Epilepsy cases? He told me I’d be amazed at how easy it is for epileptics to get tossed in jail. I’m an epileptic, he explained, and was thrown in jail. For epilepsy? For epilepsy. I can’t remember the details of his story now, but he had a seizure somewhere, lost consciousness, came to completely discombobulated surrounded by cops, and before he knew it he was in a jail cell. It took several lawyers and a judge to get him released. You never know, he said, how your epilepsy could land you in jail.

Now I know.

Forgetting

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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 brickwahl.com)

Panic in Seizure Park

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(Between health insurance in 2014…I spent over $8,000 on seizure meds that year.)

Off for more solid gold epilepsy medicine. This is like a heroin habit. Panic in Seizure Park. I prefer to go to 24 hour pharmacies late at night for the creepiness factor. Scoring Tegretol from sleazy pharmacists. OK, they’re not sleazy, but this shit is expensive. If I were Philip Seymour Hoffman this would be considered cool.

The brain ain’t having it

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It is getting harder and harder to do paperwork. The brain ain’t having it. Lots of confusion. I couldn’t remember what month it was, either February or March. My wife points out it’s October.

I’ll have to have someone fill out these forms for me. Short bus here I come. Think I’ll lie down for a bit till the skull and limb tingling passes, the fog melts away and I alight again in the middle of October with the rest of you.

Sometimes I miss the old me.

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Having your executive functions slip away is crippling. There is so much you can’t do anymore, basic fundamental stuff, it drives you nuts. Or it doesn’t, and everything is every pleasant, and then someone reminds you that you forgot to do almost everything you were supposed to do. The weirdest thing of all, though, is how everything is increasingly in the present tense. I quickly forget most things beyond a day or so, and I can’t see into the future at all as far as planning… anything. I just sort of wander along in the now, and the whole concept of time as a continuum from past to future disappeared somewhere a few hundred thousand missing neurons ago. When I’m hanging out with people you all talk about your lives in terms of things you did and things you plan to do. And I know that I used to be able to do that and just sit and marvel at the wonder of it. I think to myself that when I go home I will write about it, but I usually forget, and write about something else. Now I’m looking at this stack of papers on my desk and know that there are things I was supposed to do in there but can’t remember what. I lift up the keyboard and there’s an unpaid parking ticket and a jury notice I was supposed to call about. And a neurologist I was supposed to call. I forget his name. What a weird mess this is becoming, in tiny increments, a few damaged synapses at a time. Sometimes I miss the old Brick, but mostly I can’t remember much about him.