Taxing memory remembering taxes

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.

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Forgetting

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)

I flunked out of pre-Algebra

I flunked out of pre-Algebra in high school, so they had me take it in summer school where I passed with–I kid you not–a D minus. I think it was a mercy D-minus. I have an excuse, though, because whatever thought processes are used in any math beyond basic arithmetic sets off petit mal seizures and I end up out of it and nauseous. It took me years to figure this out, though. I thought I just hated math.

My IQ test results must have been interesting. I have no idea what score (or scores) I received, but I probably did well on the language stuff, and the basic arithmetic stuff, then bottomed out when it went beyond that. I remember taking an IQ test in high school. They’d herded us all into the auditorium and handed out the test sheets. I was whizzing through the language section thinking I was smart, then made it through the adding and subtracting easily enough, but then it began to get abstract and I began to get fuzzy. I never thought much about it though. Decades later the reason dawned on me one boring day at work when I started one of those online IQ tests. Those were all the rage at the time, one of the first annoying internet trends. This was years ago. As soon as it got to the more advanced questions with shapes, etc, my brain fizzed out and I felt sick. Limbs go numb, tongue heavy, and this fuzzy thickness descends and a sort of creeping nausea comes on. Ah ha, I thought to myself, and have avoided anything like that since. Can’t believe it took me thirty years to figure that out. The exact same thing used to happen to me in math class. I was a tough kid, though, not prone to complaining and figured everyone was like that too. Never imagined it meant something was wrong. My neurologist wasn’t the least bit surprised when we discussed it. It happens, he said. With epilepsy anything can happen. Some epileptics talk to God. Some have spontaneous orgasms. Me, algebra makes me sick. Not as fun, though probably less embarrassing.

I’m very leery of physics and philosophy for the same reason. I could never make head or tail out of either and I suspect it’s because trying to think like that sets off little electro-chemical firestorms in my frontal lobe which then spread to the temporal lobe and fuck shit up nicely. Maybe not, I may just not be bright enough to figure them out, but why take chances. Life sciences I’m fine with, though. Earth sciences, linguistics. My great regret in life is not pursuing a science career, but there was no way. You need math, and all I can do is simple arithmetic.

Certain kinds of modular maps will set me off too. Not long after I made the mistake of taking that IQ test I made the mistake of trying to read the stupid arty map in the Getty’s Top of the Hill garage. Hiply modular, way modular, expensively modular. A regular map just wouldn’t do, not at the Getty. I studied it for maybe fifteen seconds and suddenly I was in a haze, a little lost, and I couldn’t remember anybody’s name. My wife got us to our seats.

Anyway, I eventually learned that if trying to read anything made me feel out of it or sick, to stop reading it immediately. Took me thirty years of epilepsy to figure that out. Some writing will set me off too. It used to be a problem. Apparently over the years I’ve learned to write in ways that doesn’t set off my epilepsy. Couldn’t tell you how, but I rarely get sick writing anymore.

But I can take all the strobe lights ya got.

Executive functions

Epileptics are used to memory loss…that’s just part of the package and to be honest you don’t really notice it that much because you don’t remember what you forgot. But as I age and the brain has burned itself out from several decades of too much electro-chemical energy and seizure meds, I’ve started losing executive functions…that is, my organizational and planning abilities. And that is driving me nuts. I used to be incredibly organized. I got things done, stuck to schedules. Was always aware of what I was supposed to do. I laid out tasks to be done each day, each week, and did them. Now suddenly things I plan on doing don’t get done, and I have no idea how they didn’t get done. It is so frustrating. If we ever get on our feet again I will get a business manager or an office manager, somebody to manage my affairs. And anyone that has known me a long, long time–and certainly anyone that used to work with me–can see the irony in that statement.

The good thing is that there is no loss in smarts or creativity. Hell, I’m a better writer than I ever was. If I could I’d write all day long. That I can do. I just can’t plan things very well.

I get asked about writing a book all the time. Well….you have to plan a book. Those long narratives just don’t happen. I could put together a helluva collection, though. In fact, I’ve been planning to for ages. But that is something else that hasn’t gotten done.

This is just ridiculous.

My wife, of course, lost much of her executive functions in 2008 when her heart stopped for five minutes. She’s back, smart as hell, funny as ever, but she can’t plan worth a damn either. In sickness as in health, man, in amnesia as in confusion. That’s us. The perfect couple. Which we are, actually.

Oh well. Life’s trajectory can be odd. If I’ve flaked on any of you lately, this is why.

p.s.: I completely forgot I’d written about this already. Now that is funny.

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.

Tuesday Weld, looking like she forgot something.

Tuesday Weld, looking like she forgot something.

Father’s Day

I’ve been looking at dozens of Father’s Day posts on Facebook. They are beautiful things, those posts. Often very beautiful. Full of love. But  they all strike me as odd. They shouldn’t, but they do. Because I don’t really have any powerful memories of my father. He died way back, around 1990, I think, and it was sudden and an emotional bruiser. That I remember. I remember the funeral. I remember the wake. It was a good wake. He was German, born in Flint, Michigan,  but married into an Irish family and just loved the idea of a wake. He really loved New Orleans funerals — Dad played trombone — but the wake was doable. And we did it.

But that was a long time ago. And the memories before them, of my entire thirty plus years with him, well those are faded at best, and utterly missing the rest. Epilepsy does that. Big seizures — what they used to call grand mal but are now tonic clonic — can make entire memory banks just disappear. Poof. Gone. Like they never were. I had a mess of those big seizures from maybe age 20 through 24, I’d say at least half a dozen. They were nocturnal, coming out of nowhere during deep sleep. I don’t remember them. I just know what people told me, all freaked out, sometimes screaming at me they were so scared. There’s be broken things around, and blood on he pillow from biting my cheeks. Otherwise waking up was quite blissful. The next day all the muscles in my body seemed to hurt, like I had pulled every one. I never seemed to take a day off of work for something as little as epilepsy and just went about my business, every step making something hurt. And suddenly I didn’t remember a lot of stuff. Sometimes I noticed. You notice if you don’t know your name, or who you are, or who anybody is. That all comes back quickly though. Longer term stuff, though…if that’s gone sometimes you never notice. That’s the funny thing about long-term memory — what you don’t remember want bother you. You don’t know it was ever there.

That’s where a lot of my father went. Zapped away in a big giant seizure. Gone. Poof.

But I think epilepsy affects long-term memory in other ways, too. Mainly, I think it weakens it, or maybe just shortens its retention. So stuff I still remembered after my seizures, stuff that came back to me, well at some point since then those memories just kind of faded away. Not zapped away instantly but just sort of slowly disappeared, like a morning fog in a sunny afternoon. The memories get more and more faint and then one day aren’t there at all. Not that I noticed they were no longer there. How could I? I didn’t even realize it was happening. You don’t if it’s something you don’t use every day. But long-term memory is by definition something you don’t use everyday. It’s something stored away to be remembered a long time later.

A lot of my Dad faded away like that.

Most epilepsy, though, isn’t those big crazy seizures. That’s what you think when you hear someone is epileptic, the big dramatic seizures, the falling sickness. But most epilepsy, absolutely the overwhelming most common form of epilepsy, is what are commonly called petit mal seizures. Neurologists call them simple partial seizures *. They affect little sections of the brain. Sometimes just one part. And sometimes they spread like a forest fire, one there, then one over there, then one over there, each throwing an electro-chemical spark that lights the neurons in the new section into more simple partial seizures, Have enough of them, over and over and over, for days or weeks or months at a stretch, you’ll notice things changing. Things not working right. Certain cognitive skills being impacted or disappearing altogether. Sometimes they reappear, or sometimes they can be rebuilt. The brain, extraordinary thing that it is, can do a lot of its own repairs. Essential memory seems to be recovered. Maybe not 100%, but it comes back. But I think that maybe that the brain rebuilds some of that missing capacity by taking neurons used for one thing and using them for another. Maybe facial memory (I lost most of that once, but it seems to have come back) was restored utilizing some neurons used for certain types of long-term memory. You don’t have just one big thing called long-term memory. It’s scattered through different parts of the grey matter, and is divided up functionally. You remember names here, friends here, family here, things you learned in school there, there and there, etc. And well, Dad was dead. Been dead a long time. Those neurons (what you call memory cells) that are dedicated to retaining memories of my father are neurons that the brain used to repair other damaged parts of the brain. My brain took a lot of damage in 2006. Simple partial seizures swept across it like wildfires, like a season of wildfires, month after month after month. The brain seemed to begin repairs as soon as those fires abated though. Functions slowly came back. It’s much improved from its low point. Then, a few years later, my brother is telling a very detailed story about my father and me and I realized I barely remembered my Dad at all. He was a shadow, two dimensional. A television show I watched as a kid and barely remembered. I don’t even recall what he sounded like. I’ve forgotten his voice. Imagine that. Not remembering your father’s voice. Yet it seemed more odd than sad. He was my dad after all, and you’re supposed to remember your father’s voice. But the emotional connection was gone. If you can’t remember somebody, what they sounded like, it just doesn’t bother you. It should, but it doesn’t. It doesn’t because he is no longer in your memory. Because that memory is gone. Poof.

Memory loss is a weird thing. It ought to bother you but it doesn’t, really. Not if it is non-essential memory, memories you don’t draw on every day. And you can’t miss memories you can’t remember you had. But I do know I loved my Dad, we were good buddies, he was senior, me junior. I was the first born son. He’d tell me that I was the man of the family when the company sent him off on another business trip. He taught me all kinds of stuff. But I don’t really remember that either. In fact my entire life before my first big seizures, until I was nineteen or twenty, is just a smudge. When us siblings get together and tell stories I can remember just a fraction of any of them. It’s like I’d  never been there. Or maybe had heard the story third or even fourth hand. That’s where my dad memories are.  All those memories people are sharing today, those are memories I know I had, must have had, but I have no reference point. They’re gone. Like they never even were.

Just the same, Dad, Happy Father’s Day.  I may not know what it was I’m missing, but I’m sure I’m missing you nonetheless, like a good son.

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Notes: Continue reading