Status update

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.

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Remembering all the things you used to be able to do

You know, I have to confess I found my corporate day gig much more rewarding than writing. I don’t mean financially rewarding–though it was, obviously–but more personally rewarding. Writing has always been so easy, and I have to go out of my way to make it challenging, I never really get much a feeling of accomplishment from it. I mean I like writing, and I like a lot of what I do write, but none of it knocks me out. It’s just pretty writing. And now that my brain is so worn away by epilepsy that I can no longer do what I used to do at my day gig, that I was so damn good at, that’s a drag. That’s when I really know I’m disabled. I run into people I used to work with and I don’t know what to say. Of course to them the writing is so much more exciting. They can’t imagine I’d rather have a day gig. That I’d rather not be a full time writer. But I suppose when a messed up epileptic manages to hold a day dig despite all the challenges, nearly all of which I was able to conceal pretty well from my co-workers, and when he is indeed is one of the very best in his company at that gig, that’s a genuine feeling of accomplishment. Making it in the normal people’s world is rare among my sort. Most epileptics can’t manage it. I not only managed it, I thrived at it. Alas, in the long run it’ll eat an epileptic up, as it did me, the mental strain and pace causes too much neural excitement and wears out the brain, burning out the synapses connecting the neurons. Brain functions slip away and you’re left cognitively crippled. Time disappears. Planning disappears. Papers pile up, mail goes unopened, bills are forgotten. Surrounded by things that never get finished you find yourself remembering all the things you used to be able to do but now can’t. So you write about it, and the words flow like liquid gold, so easily, too easily.

Short bus

Losing your executive functions doesn’t hurt, it doesn’t make you less intelligent (well, maybe a little), and doesn’t seem to change the personality dramatically…but it is a pain in the ass. Sometimes a mild pain in the ass. Sometimes catastrophic….though you don’t really notice until one of the catastrophes hits you. Part of it is the time thing I keep talking about. I mean you retain your 24 hour sense of time–that seems to go much deeper than all the fancy brainage humans have laid on over the eons. Hell, plants have that sense of time. It’s the calendar you lose track of. That’s an add on we probably developed tens of thousands of years ago. Maybe earlier. It’s up there in the frontal lobe, apparently, and the parts of my frontal lobe that used to do wonders with calendars (and Microsoft Office and scheduling for a dozen bosses and complex multi-tasking and writing a weekly column for a major paper and never missing an issue in seven years) has been worn away by too much electro-chemical energy. (That’s what epilepsy is: too much electro-chemical energy.) But even more of a hassle is my inability to focus on things. Shit doesn’t get done. I am utterly mystified as to why it isn’t getting done. I have tried a zillion techniques to remind me that shit isn’t getting done. But the end result is shit not getting done. Even my writing has changed and all I seem to write are brief vignettes, snippets, small little essays. It’s pretty writing, sure, but it’s impossibly short. What can you do with it? But that’s how I think anymore, with (to quote our president) a few exceptions. But what especially disturbs me lately is that I can’t seem to focus on books. I was always the type that started a book and finished it in a few days or a couple weeks if it was long and turgid and dull, but I always finished it. Lately it takes forever, and I don’t always finish. I’m working on that too. I have so many books to read. I’m not making a lot of progress. Still, life is pleasant. It shouldn’t be, because actually everything is hopelessly fucked up, two brain damaged people incapable of doing what adults need to be able to do to survive in a complex world, but it’s never been more pleasant. We have friends who look out for us, and we keep life simple and spare. I get up and write. She reads. We watch old movies. She walks back from Trader Joes with a few groceries, some flowers and a snack. She makes dinner. I wash the dishes. It’s a daily routine but doesn’t feel that way since every day is completely new. Very little stress. Very little contact with the outside world. You look at people on the short bus and they always seem to be smiling and laughing.

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)

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.

I can feel my mind going, said HAL

One of the more fucked up things about a lifetime of epilepsy is that after a few decades of excess electro-chemical energy, faulty wiring, memory damage and fifty thousand or so pills you can feel the executive functions slipping away. I used to be extremely organized, now I’m growing slipshod. I use to be able to plan ahead. Now I catch myself winging it. I’m missing bill payments and having trouble budgeting. I lose track of the days, of the hours. I forget where I’m going, or what I’m supposed to do. I miss freeway exits. Forget names. Forget events. Forget what the hell I’m supposed to be doing. I still haven’t the replaced the tail light in the car. It’s this slow and steady slippage. It’s not like Alzheimer’s, it’s not awful and there’s no confusion and bewilderment. And it’s not all the time, either, and I still figure out new fixes to things, but I’m sure not what I was a decade ago. Losing your mental edge, they call it. Of course, I’ve seen this all before…when my wife came back to life after her four of five minutes away from us all, she had near total amnesia and her own executive functions were blown to hell. She regained much of her memory, and some of her executive functions. One thing I noticed she was doing was something I used to do–that is do some of the exact same thing in the exact same order everyday. You ritualize something it becomes automatic. It’s just she did more of that on a daily basis than I did. A whole day like that, with lots of time off for reading and solo scrabble games. She rebuilt much of her damaged brain that way, by reading and scrabble. And it occurred to me a couple days ago that I am now doing a lot of the same things the exact same way everyday. Like if I didn’t, chaos would ensue. The weaker the brain’s executive functions become, the more you cling to pillars of time, solid blocs of ritualized behavior, otherwise there’s nothing to hold the day onto.

Sigh…what an ideal couple we make. Though I wish to hell I’d noticed I hadn’t paid the gas bill in ages. They’re threatening cold showers. I used to write this down. Had a monthly calendar. That way I wouldn’t forget to pay anything. Apparently I forgot I had a monthly calendar. And what do I do about it? I blog. That’s brilliant. At least I can still write. Though in shorter pieces. I drift off if I blather on too long. Hence the short essays now, a couple hundred words, a single paragraph. That’s about what I can do now. That’s how I think. Fortunately that matches the world’s own ever decreasing attention span. 140 characters or less. I got a way to go before that is too much.

Dave, my mind is going. I can feel it. There is no question about it. I can feel it. I can feel it. I can feel it.

Dave, my mind is going.