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Eric: On death and dementia and things Positive.

This one's going to be a little more serious than normal. I hope that's okay with folks.

See, I've been thinking about the reactions folks have had to yesterday's snark of the current Something Positive. It seems Milholland really hit one out of the park, this time. People have been seriously affected, and no one's trying to burn down his home as far as I know. Certainly, it means a lot to me.

In part, because of the juxtaposition of Monette's words and the document on the table. "I love you too, Daddy," she says, in a voice full of tears. They're tears that come because Monette is overwhelmed, because she has had something wholly alien to her happen. She has screwed up, badly, and the man who adopted her as his daughter used it as a chance to show her how much he loves her.

Monette hasn't had much of that. Her birth father was horrid to her -- dismissive of her and her stupidity. Her friends -- even the ones she has been closest to -- have never been afraid to be snide about how dumb she is. Her closest friend in the world walked out on her -- leaving her with bills galore -- with nary a glance back.

And now she's loved. Loved by parents who think the world of her, and -- astoundingly enough -- believe in her. And in that environment, something's beginning to grow out of her. Something... dare I say it... positive. And they would never leave her.

But Fred Macintyre is old. And Faye, though not as old, is getting on in years. And one of the two at the very least has been screened for Alzheimer's Disease and the prognosis isn't a good one. Happily ever after isn't -- all things come to a close, and there's a countdown timer on this home Monette has finally found.

And it hits close to home for me.

Not because of my parents. Oh, they're not getting any younger and we make jokes -- you have to make jokes, or you go nuts -- but they're both healthy and mentally acute.

But, you see... both of my grandmothers suffered from forms of dementia. One passed on, but went through periods of fear because she couldn't understand what was happening. One is... well, she's comfortable. She's in a good home. The last time I saw her, she had no idea who I was, mind. I'm not sure she knows who any of her children are, much less her grandchildren.

But she seems content. And she's well cared for. And, of course, she's loved, even if she doesn't know it.

Both sides. On neither side did my grandfather survive long enough to know if it would be a problem there, but there's at least some genetic predisposition on both sides of my family to an eventual mental decline on my own part.

And that terrifies me.

My whole life, the one thing I've had going for me was my mind. I know things. I put pieces together. I can write. I can think. I understand the universe. I contain stories and multitudes and attitudes and opinions. I am legion and I am myself.

But I'm not quite as sharp as I was in my twenties. I don't pick things up like I used to. Take CSS. HTML was no problem for me. And more to the point, the concepts involved made sense to me, and as I learned them, I learned markup, and it all worked. Sometimes I have to look things up, but I know what I'm looking for.

CSS? It's like I'm dealing with an alien language. I can make out some of the words, and I can make guesses as to some of the effects at poking with things, but for the most part it's opaque to me. I don't understand. I can't understand. I tried, so hard, but I couldn't get it. I can't build the framework in my head.

And I realize that's going to become more common with time.

That's the fear that can keep me up long hours at night. What will happen to me when I lose my mind? When I don't recognize things? When I make no sense.=? When the world is huge and alien and frightening and I can't figure it out?

Those who immediately think "too late" should know that the joke has already been done.

It's almost odd to consider. See, I've never much worried about it, because I've known -- known -- I wouldn't last long enough to make it a worry. Hell, I was pushing five hundred pounds. Getting out of bed in the morning was courting a heart attack. I'm still not out of heart attack country.

And I'm a survivor of advanced congestive heart failure and idiopathic cardiomyopathy. In both those cases I've recovered and become healthy (though my health is still somewhat fragile, as all of you should have guessed by now). However, even as a survivor there is some -- to use the term for it -- diminished life expectancy involved. There's every chance that even if I make it to goal weight my heart will just stop sometime in my sixties and that'll be that.

...or my fifties....

...or possibly my forties....

...but not my thirties, more than likely. I've put at least another six or seven years on my life with the weight loss. That doesn't suck.

So, I've been somewhat morbidly comfortable with my eventual painful death. I've had time to work it into my experiences.

The thing is... medical science is improving all the time. All the time. And one of the areas it's getting massively better in is recovery from cardiac issues and heart failure. Hell, had my cardiomyopathy and congestive heart failure gotten critical six or seven years earlier -- six or seven years -- I would have needed a heart transplant to survive. Now, thanks to beta blockers and ACE inhibitors, we got my original heart back to a manageable size and functionality. With diminished life expectancy, but since my life expectancy without them was, oh, 2001 if I was lucky, we're calling that a net win.

By the time I'm into my sixties, I fully expect them to be a lot better at rehabbing and improving cardiovascular performance. Tons better. So there's no reason to expect that they won't be able to keep me around for another forty or fifty years after that. And after those fifty years, there's every reason to think that medical science won't have ways to make my hundred and ten year old ass feel at least as good as it does right now. Remember, the Baby Boomers are ahead of me, and they're going to demand the best damn research into fixing aging that monumental amounts of money can buy. As an early-generation Generation-X'er, I can slack right into the benefit of it the way I slacked into everything else behind the Baby Boom.

Maybe that means they'll work out dementia and Alzheimer's and all the other conditions that used to be lumped together into "senility." There's research going on, certainly. Maybe.

But maybe they won't.

Death I can deal with. We all die, and I'm on borrowed time as it is, and I'm grateful. I really, really am.

But living to a ripe old age with a rotten and corrupt mind, a swirl of old characters and dead friends and confusion and outdated understandings at best... that's very close to my definition of Hell. And I can see it happening. So clearly.

Fred and Faye, in Something Positive, have before anything else, tremendous dignity. It's what makes it funny when Fred charges into a room and discovers Monette having sex with another woman.

Alzheimer's takes dignity away from you, along with rationality and comfort.

Milholland hit one out of the park, all right. It's a damn good take on a damn hard subject, and everyone wants to see what happens next, and almost certainly it'll be weeks or months (or years) before we do.

In the meantime, late at night, it's just me and my mind. And I'm wondering which one of us will check out first. And wondering if it's cowardice to hope it's me.

Posted by Eric Burns-White at September 28, 2005 2:33 PM

Comments

Comment from: Christopher B. Wright posted at September 28, 2005 3:21 PM

For similar reasons, I always thought Flowers for Algernon was a truly terrifying story. I always wondered if later in his life there was a small part of him that wasn't dimly aware that he was so vastly diminished from where he had been.

Comment from: Sempiternity posted at September 28, 2005 3:32 PM

Gah yes! That book really creeped me out when i read it in, oh, elementary school...

Mental accidents are scary scary things: one cannot live forever, but one hopes to at least live meaningfully.

Comment from: Dave Van Domelen posted at September 28, 2005 3:37 PM

I share way too much in commen with your sometimes, Eric. :)

To give some comfort, loss of mental flexibility and difficulty in learning new things is a normal result of aging. Our brains, like our bones, are more flexible as kids and more brittle (but stronger) as adults. There are things you can do to maintain mental flexibility, and you pretty much seem to do plenty of those already.

Plus, I expect that by the time you seriously have to worry about Alzheimers, there will be a simple test for it. There's almost one already, IIRC.

Comment from: Wednesday White posted at September 28, 2005 3:43 PM

CSS is something very different from HTML. The two skills are complementary, but they come from rather different places. It's one thing to tell me that this is a box, and another to tell me that this box is floating relative to this other box, and it's sized relative to this element but not to that one, and, oh, by the way, the padding and margins have completely different rules as well. And if you're used to how HTML can be warped and twisted into doing that, which you still sort of are, you might have a hard time making the transition. Some people never make it.

The cascade breaks people. It leaves them sobbing upon rocks. That's why every blasted blog looks the same, and you have perfectly sensible people still using hybrid layouts against all reason. That's why I don't have a shiny pink site for you yet. That's why I cheated and had you pick up Stylemaster for me that time. (And, to a lesser extent, why I think it might be a good idea for you to try it out as well.)

And then there's IE's mishandling problems. Remember how easy the Gossamer Commons thing would have been to implement if it wasn't for them? You know how they have to get fucking geniuses in from the moon to write about things on A List Apart which would be phenomenally straightforward if it weren't for fucking IE? And individual versioning differences which leave us scrambling for the two people who are still stuck on Win9x and morally opposed to running Windows Update?

I will, of course, refuse to listen to you when you tell me the same thing, but I don't think this has anything to do with mental acuity and everything to do with how your brain worked from the start, and habits you picked up along the way. And, I mean, how many hours have we spent arguing the merits of <i> vs <em> and the nature of intent in tagging styles? Your head's in a very different place. It's by no means an indication that you're starting the Great Decline.

Everything else I have to tell you in private. So I already have.

Comment from: lucastds posted at September 28, 2005 3:48 PM

Read this comic

when you're feeling a bit morbid. It's a really nice read.

24 hours comic.

Comment from: Wednesday White posted at September 28, 2005 4:08 PM

I didn't like either literary incarnation of Flowers for Algernon, mostly because I felt some sort of obligation to have a reaction to it and it just wasn't there.

Comment from: Eric Burns posted at September 28, 2005 4:14 PM

I preferred the short story/novella to the novel, myself.

And preferred both to Charley.

Comment from: Christopher B. Wright posted at September 28, 2005 4:16 PM

Site note to Wednesday: CSS is actually kind of fun once you get into it. The thing that *really* breaks people doing blogs, I think, is php...

When I set up Eviscerati.org I used most of the php from one of Wordpress' default styles, but I nuked the stylesheet and started from scratch because I wanted three columns. The site may be ugly, but it's 100% my ugly.

Comment from: Sparky posted at September 28, 2005 4:33 PM

You know Eric, I've been here since the beginning and you've gone through alot and wrote alot on this site that has caused me to seriously think about signing in and commenting but this finally pushed me over. I know exactly where you are coming from with the fear of Alzhemier's. I am terrifed of it. While I am an accomplished athlete and can't think of many things worse then having my body degenrate while having my brain stay as prisoner in my own body bothers me, slowly losing my mind is even worse. At least with the first option I would still have books and comics to keep me company. And a big part of my life has been spent gaining idependence. The thought of having to rely of someone again and not knowing it or even being able to acknowledge it is horrible. And to top if all off I have a history of Alzheimers in 3 of my 4 grandparents.
But honestly, what scares me even more is the fact that my parents are older, and I cant stand the thought of seeing 2 of the toughest, smartest, and most compassionate people in the world go through that. All this is what has driven my into my career as a research scientist working, you geussed it, on Alzheimers. We are making great headway on it and several other problems. We will solve this problem. I know we will. Its just a matter of time. Everyone who has been affected by this, just remember, there is hope. Besides, Dad says I have 10 years before I have to start changing his diapers so rest assured I'll have it licked by then. I mean, really, no ones wants to have to do that.

Comment from: Eric Burns posted at September 28, 2005 4:38 PM

You know what's incredible?

There are artists and writers, geniuses and research scientists, biologists and astronomers and nuclear physicists, lawyers and doctors and good old fashioned curmudgeons, all reading Websnark.

You know what I'm proudest of? Smart people like the things Weds and I write.

Comment from: J.(Channing)Wells posted at September 28, 2005 4:46 PM

Don't forget, um, petty civil mail clerks. Er. Yeah.

(Petty civil mail clerks with a flipping Master's Degree, I might add. Bitch bitch bitch.)

Comment from: J.(Channing)Wells posted at September 28, 2005 4:48 PM

And just to save Shaenon the trouble, let us further add "...who farm chickens" to the above.

Comment from: Eric Burns posted at September 28, 2005 4:53 PM

Channing? You count as "smart people."

(What's the Masters in, anyhow?)

Comment from: Matt Sweeney posted at September 28, 2005 4:56 PM

Site note to Wednesday: CSS is actually kind of fun once you get into it. The thing that *really* breaks people doing blogs, I think, is php...

I'm with Wednesday. PHP I can handle, it is just another programing language. CSS though is the spawn of satan. And that's before MS decided that they wanted to be lazy bastards about supporting standards.

Comment from: Christopher B. Wright posted at September 28, 2005 5:00 PM

Well, CSS is no problem for me. PHP, however, kicks me in the head repeatedly. Over and over. Redundantly.

Comment from: SeanH posted at September 28, 2005 5:14 PM

And first-year philosophy students! OH YEAH

I seem to remember reading, I think in New Scientist, that regular mental exercise helps slow, stave off and perhaps even reverse the various degenerative nasties generally associated with aging. So as long as you keep Websnark up, you're probably fine!

Comment from: Shaenon posted at September 28, 2005 5:17 PM

Long after dementia has eaten away my brain, I'm sure I'll still be able to sing:

Charlie and Algernon, patter and song
Do we belong together? Yes, we belong
Catch us in vaudeville, you'll be a fan
You've gotta love our billing: Of Mouse and Man!

Our vocals may be cheesy, but we dance with such ease
And from our smiles they're in the aisles, because we say "Cheese!"

(Oh, and you have to picture Michael "Phantom of the Opera" Crawford as Charlie Gordon.)

What? It's friggin' awesome!

Comment from: J.(Channing)Wells posted at September 28, 2005 5:30 PM

Eric:

My M.A. is in the field of Speech Pathology, earned in spite of a rather entertaining breakdown during my final year at the U of I, after which I went running scared from the field. They mailed me the paper. Nowadays I use my clinical experience mostly to produce ridiculous technobabble that's only ninety-nine percent hogwash, rather than a hundred, and am generally happy with this.

Sometimes I think I shoulda just majored in writing, but then I wouldn't have gotten to take GROSS ANATOMY LAB where we looked at CUT-OPEN DEAD PEOPLE. I think this sort of thing has done more for me as an artist than many "workshops" might have.

Comment from: Abs_of_Flab posted at September 28, 2005 5:37 PM

I can totally empathize with your sentiments, Eric.
On both sides of my family, people have had dementia and strokes. Just right now, my grandmother's in the hospital permanently, waiting for the end of her days. It breaks my heart every time I go see her because she forgets every minute (literally) that I'm there. And every time I leave, I just feel a little more diminished. How she is now versus how she was when I was little are two such wildly disparate things that I often wonder if I'm dreaming while sitting at her bedside.
And then I go back to the lab...
...where I'm doing doctoral research on all manner of brain damage and how it affects communication...
...and my day just keeps going downhill.
I worry about all the different, crazy ways that my mind and ability to use and understand language can become impaired or obliterated wholesale. And I marvel that I actually believe being quadraplegic is eminently more acceptable than damage that disrupts my brain. Or for that matter, that the mind can be both so wondrous and fragile at the same time.
Getting back to what started this and a previous snark: Something Positive is great. And now I really CAN'T wait to see how things turn out. And while no small part of me would be cheering if the screening is a false positive (I've grown to love Fred MacIntire), I think that the story would be that much better and uplifting if he has it.

Comment from: Abs_of_Flab posted at September 28, 2005 5:40 PM

Huh. J(Channing) Wells is from Speech Pathology? Cool. That makes two of us.

High five!:)

Comment from: Abs_of_Flab posted at September 28, 2005 5:43 PM

Whoops - just saw the part of the "running scared from the field" part. I didn't mean any offense.

Comment from: Paul Gadzikowski posted at September 28, 2005 5:50 PM

Oh, and you have to picture Michael "Phantom of the Opera" Crawford as Charlie Gordon.

Haven't seen that. For someone named Charlie Gordon my default image is therefore the 70s konigsbergesque tv actor Barry Gordon who played Charlie on Fish.

Eric: Dunno what to say, dude. For myself, I have on one side a family history of memory dysfunction manifesting in one's eighties or early seventies. But I'm content because to draw my webcomic for twenty-five years I need only function till I'm sixty-nine.

And, for what comfort it may be worth, checking IMDb to verify Barry Gordon is the name of the guy I was thinking of (it is), I see that Abe Vigoda is still working.

Comment from: Dave Van Domelen posted at September 28, 2005 5:50 PM

It was you, Abs. J was running from you.

Comment from: alschroeder posted at September 28, 2005 6:10 PM

My entire webcomic owes a tremendous debt to FLOWERS FOR ALGERNON. (Among others, like ODD JOHN, Doc Savage, etc.) Switching between being very aware and very mentally deficient is the RECURRING theme of my comic. And currently---and coincidentally---I am dealing with a character who is currently being "cured" of Alzheimer's...

Of course, the cure will kill her in two weeks...

I'm older than most of you. I'm 52. And I deal with a mentally unusual person every day---my younger son (as was my deceased oldest son) is nonverbal autistic. And so far, I'm not really worried. For one thing, my memory for names was ALWAYS lousy, but my visual memory is excellent.

I keep on learning new things, and that keeps the mind active and alive.

But if I get Alzheimer's? My character said it best, "I'm not ashamed, or afraid, of Alzheimer's. I was born babbling, needing a diaper. If I die that way...no loss." But she acknowledged the pain it caused others. "But I've seen what this has done to Larry (her husband)...my Larry. No, Lorelei...two weeks...as myself...will be enough."

I have plans for how it will turn out. But I have the feeling, whatever I was going to say, Randy's trumped me.

Good for him.

Comment from: Jack' posted at September 28, 2005 7:41 PM

Oh boy do I share this terror. Hi, commenting for the first time because this is something that I live with so closely that by now it's like breathing.

I suffer from a number of serious mental conditions, including schizophrenia and autism, and those have made my life incredibly difficult to live, but in some ways they're not what I'm afraid of.

In addition to my assortment of mental illnesses I have another condition... I don't know what it is, because none of my doctors have ever been able to figure out what exactly was causing the troubles. Essentially it acts like a permanent sort of ear infection. I've had it my whole life, and at first the only symptom was acute pain. But then when I was 15 it started affecting my sense of balance, giving me severe dizzy spells, and now every time I stand up I have to constantly steady myself so I don't fall over.

But that's not the scary part. Since I don't know what's really causing these problems, I have no idea whether it will continue to spread or not. Twice that I can be sure of, I've suffered from attacks which have completely destroyed my ability to concentrate. I'm pretty sure this is because the condition affected my inner ear. And much like I now can't walk in a straight line, I'm terrified that one day I just won't ever be able to think in one either. No one has any idea what causes this condition, so there's no way of treating the cause.

There's a history of Alzheimer's in my family as well, but I'm scared that I won't even last long enough to worry about that.

All I have is my mind, and that's already riddled with hallucinations and delusions and dulled by medication.

Comment from: J.(Channing)Wells posted at September 28, 2005 7:46 PM

AoF: No offense taken. The discipline was kind of running my life, because one thing I've never learned how to do is to plan things out beforehand. Therefore, while normal people would prepare their next clinical session, be done with it, and relax afterwards, I would fail to prepare it and fret constantly until it happened, whereupon I would immediately commence fretting about the next one. I've come to peace with it.

Dave: Come now. I need to know a person for a good six, seven weeks at least before I can work up enough of a good head of steam in the horror department to run screaming from them. Besides, he offered to high-five me. High-fives = Love!

Comment from: Ardaniel posted at September 28, 2005 8:53 PM

Sometimes I wonder why I'm bothering to go into a visual-arts field (post production), because I've got about 25 years, tops, before I go blind in one eye, possibly both if I'm really not careful/ not lucky (I've got multiple diagnoses, but the primary problem is traumatically-induced retinal issues). I'll be out of a job by 55 unless they *seriously* work something out, and I'm not sure the current state of American innovation is such that someone *will* work something out that I can afford/ will be able to get without moving to some country that's got my own beat on the biomedical end of things. Heck, I still can't afford the second thing they did to stabilize my vision, and that was two years ago.

But, y'know, working on my schoolwork and just trying to do what I can now will profit me more than sitting on my ass waiting for my sight to vanish, so why not do it? I might as well pull a stable paycheck for once in my checkered existence before everything goes that disconcerting grayish-white for good.

Comment from: Ardaniel posted at September 28, 2005 8:54 PM

Also, Jack, have you ever been checked for Meniere's Disease? Sounds pretty congruent with what you're experiencing, although I'm no doctor.

Comment from: Sage posted at September 28, 2005 10:09 PM

I've said it before and I'll say it again: Fred and Faye are the real reasons to read Something Positive.

Excepting the storylines involving those two characters, Randy only really has one joke. "Look how witty and biting a response to this situation." It gets old fast. I started reading Something Positive within a few months of its inception and I think I was done with it within a year. Wit and sarcasm alone don't really drive the funny for me. They can be great assets, sure, but they can't be the core.

But every now and again I'll go back to SP, and it is always -- ALWAYS -- because of Fred and Faye. They are respectable characters, in a way that none of the rest of the cast will ever be, and I think they force Milholland to really stretch himself as a writer.

The rest of the cast has touching moments, sure, but it is always dulled by the lack of civility in their demeanor. Fred and Faye make biting comments now and again but there is a decency in those characters that really shines through.

Definitely a hell of a bomb to drop, especially in the context you mention, Monette's new home et. al. But further proof that these particular subplots are Milholland's best work.

Comment from: Wednesday White posted at September 28, 2005 10:14 PM

CSS is actually kind of fun once you get into it.

I've been "into" CSS since sometime in the late nineties. Bugger if I remember when, though. (I wasn't willing to implement it outside of vanity projects until '99, and even then was cautious about positioning issues until late 2000.) On its own, I don't mind it so much, but negotiating the vagueries of IE without cheating makes me crazy.

Comment from: lmf3bthelma posted at September 28, 2005 10:31 PM

It's been 19 months, almost to the day, since I lost my father to Alzheimers. Died Feb 26th, buried on Leap Day, 2004.

I teach Psych 101 every semester, and we cover Alzheimer's in our unit on memory. It's been probably 3 years since I've been able to get through that lecture without tearing up.

I'm not ashamed. It's a coin toss who goes through more Hell, the patient or the family. There are a lot more wimpy reasons to shed a tear in public.

Comment from: William_G posted at September 29, 2005 12:16 AM

I can't wait to be old and senile so I can tell people long meandering stories tha go nowhere- like the time I caught the ferry over to Shelbyville.

I needed a new heel for my shoe, so, I decided to go to Morganville, which is what they called Shelbyville in those days. So I tied an onion to my belt, which was the style at the time. Now, to take the ferry cost a nickel, and in those days, nickels had pictures of bumblebees on 'em. "Give me five bees for a quarter", you'd say.

Now where were we? Oh yeah - the important thing was I had an onion on my belt, which was the style at the time. They didn't have white onions because of the war. The only thing you could get was those big yellow ones...

Comment from: 32_footsteps posted at September 29, 2005 12:21 AM

I'm not sure if it's fortunate or not that nobody in either side of my family ever came down with Alzheimer's. On my dad's side, it's because almost all of them died of heart failure before then (my grandmother, still alive in her mid-80's, is the exception, and she's still sharp as she always was). On my mom's side, it's because it's tough to tell where one mental issue stops and another begins.

I figure I'm just going to make what little I have count. Though I will try eating much healthier than previous generations - I have the feeling that the fatty diets traditional in my family didn't help previous generations' heart issues any.

Oh, and I don't know if anyone noticed, but Randy did mention on S*P that his father does not, in fact, have alzheimer's. So that's good news, at least.

Also, here's a question - where does someone whose greatest aspirations include a justifiable excuse to play video games 40 hours a week fall in the intelligence scale? Whether or not I, er, I mean he, he has a Bachelor's in a foreign language? Just purely for curiosity, of course. ;)

Comment from: Fanusi Khiyal posted at September 29, 2005 3:10 AM

For what it's worth, I am a Molecular Biologist whos speciality is biogerontology (the science of aging). I have been following means of curing age-related diseases for some time now. As regards Alzheimers, there have been some pretty amazing results recently. Two weeks ago I attended a conference where there were papers on the depletion of amyloid plaques which cause the disease. Even more promisingly, a truly bizarre result arose through work with Stem Cells in mice. The mice in question had had Alzheimers induced, and the treatment did not just stop the progress, but the mice actually regained their lost knowledge.

So, as far as you, specificlaly, are concerned, you should be home clear. Long before you reach the age where you are in danger, there should be treatments to solve it. That is _if_ certain policy boffins don't _insist_ on shoving their oar in where it isn't wanted...

Comment from: Prodigal posted at September 29, 2005 3:15 AM

Alzheimer's runs in my family as well, so I know the terror of which you speak, Eric.

Comment from: Jack' posted at September 29, 2005 9:00 AM

Ardaniel: Thanks for the link. I honestly don't know if I've ever been tested for Mnire's Disease, though the symptoms do seem to fit. As I said, I've been having these problems all my life, so most of the tests I've had were done while I was a small child, and so they didn't really share the information with me.

Sadly the way they dietary method I found for treating it is something I already do just out of preference, which I guess explains why it's not as bad as it could be.

Comment from: larksilver posted at September 29, 2005 9:17 AM

Wow. All these real people doing real things, and I push paper for a living. 'course, if I'd finished college (read: robbed a bank/inherited vast sums of cash to pay for it), then I would be herding teenage rockstar wannabes (choir director) or Kenny G - shudder - wannabes (band director). So... maybe it's better for the world that I push paper.

Eight years studying voice before I realized I'm too short and my voice isn't right for opera has to count for something, right? Right? Uhm. I can play a bunch of different musical instruments and know how to pronounce 5 languages... look! I can pose for smart, allright? hehe

Comment from: vilious posted at September 29, 2005 9:24 AM

Smart geeky people identify themselves with their intellects. That just isn't so. You could get much, much less intelligent, and still have your core personality, what those who love you love about you. All that work you did does not disappear just because you can no longer add to it.

Alzheimer's is undignified because dying is undignified. We all end up drugged, delirious and incontinent, some sooner, some later.

What I hope for is that the part of me that worries about forgetting things gos before my memory does. Also, it would be nice if my fortitude does not vanish before my capacity for suffering does. It would be wonderful if I stopped caring how I seem to others before I can no longer act right around others. I would be perfectly content to be a cheerfully demented old guy. But it is all in the lap of the gods. Some get lucky, some don't.

Comment from: larksilver posted at September 29, 2005 9:26 AM

Oh, and to the actual POINT of the snark. My great-gran had to have live-in help for the last 15 or so years of her 82-year life, but the decline began a long time before it got that bad.

I can still remember the time, before my uncle came to live with her, that I spent a week keeping her company while my grandmother was out of town. She alternated between trying to stuff me with food (some of which was ewwwwwwwwww to a 13-year-old) and telling me stories about recent gatherings including people I later found out had been dead for 20 years.

I figure there are two things high on my list of potential definitions of Hell: 1) losing my somewhat fuzzy brain power, forgetting my son's face (oh, shit that's a horrible thought), and 2) retaining my brain power and being unable to communicate at all with the world. Imagine having the mental acuity and physical difficulties of Stephen Hawking and not having the groovy chair thingy. horror!

I'm not a huge fan of S*P, but I completely understand your concerns about losing your mental functions. One thing though: you might feel that your brains are all you've got going for you, but you're wrong. Brains are great, and yours are top notch, dude, but the thing that shines in your writing isn't just how clever you are (sestina-man lives!), but the heart within. That's the important bit, yup!

Ask your mother: I seriously doubt she would be any less proud of you, or love you one iota less, if you were dumb as a box of rocks.

Comment from: Christopher B. Wright posted at September 29, 2005 9:29 AM

I guess that depends on the rocks. Are they *mean* rocks? Do they track dirt through the house?

Comment from: siwangmu posted at September 29, 2005 10:03 AM

My mother's mother (we call her GaGa) is going through... something. It seems like the only Alzheimer's indicator she has that I know of is the memory loss, but it's made for interesting times. Only 5 years ago, maybe less, we threw a giant family party for Gaga to celebrate the fact that she had been running the little country general store my Mom grew up in for 40 years. She had off and on help in the late 80's and early 90's, including from my Aunt, now deceased, but as I understand it Gaga was pretty much on her own once Papa (my grandfather) died in 1985. I looked back at a picture from the party the other day, and I was shocked to realize that it looks like Gaga is at least 10 years younger. I realized how capable and energetic and sharp-witted she'd still been. Sometimes she still is pretty sharp. Other times...

When Gaga moved out of the store to come live with us, she brough a little dog, a stray she'd taken in down at the store. We don't know how old it was; we think she'd been caring for it at least 10 years, and the dog was unfortunately the kind that really couldn't make it much longer. She made it a good couple years at our house with Gaga, though, and Mom and the vet tried to prepare her for the idea. I know it made my heart burn inside when they told me that the vet had said things like "sometimes it's just their time and they have to go" and such, because I was desperately frightened Gaga would try to go too. I mean, not try try, but give up inside or something. Sally (the dog) died last spring. Mom told Gaga about it and sat with her and they cried together and held each other.

After a day or so (I don't know exactly), Gaga asked where her little dog was. Mom told her, "Mama, I told you this, but Sally is gone," and they had the entire talk again, only this time Gaga, hurt and scared and angry, accused Mom of not telling her, of hiding the dog's death and I don't know what all else besides. The same question and the same confrontation happened over, and over, and over, and they were both a wreck every time. Every time, Gaga asked about "my little dog..." Mom's not sure she knew what her name had been. Finally, when Gaga asked, Mom just started answering "I think she's under the bed, Mom." Some time after that Gaga stopped asking.

I'm sorry if (a) that depresses anyone or (b) that seems like a trivial circumstance compared to what we could be going through, but reading this thread left me with a powerful urge to share.

Comment from: Christopher B. Wright posted at September 29, 2005 10:23 AM

Eight years studying voice before I realized I'm too short and my voice isn't right for opera has to count for something, right? Right?

I majored in theatre -- Bachelor's Degree in Performing Arts -- and became a technical writer, which I've been doing for... um... 12 years now. And I still insist it's just a day job...

Comment from: Sparky posted at September 29, 2005 12:26 PM

I have a similar situation occuring with my grandpa as with the dog. Sometimes he can't remember my name but without fail everytime i go see him he asks about my girlfriend and my dog. I havent had the heart to tell him that I broke up with the girl 6 years ago and the dog died 4 years ago. Its just not worth going through that conversation everytime, so to him I still have the girlfriend and my dog is still happily chasing rabbits around the farm.

Comment from: quiller posted at September 29, 2005 2:59 PM

Well it's not an Alzheimer's story, but when I was in college I worked one summer on campus with the conventions crew. We were driving around the electric car when day, and I took a corner too fast, and a friend of mine who was working with me fell off the cart, and bounced his head on the asphalt. Cut to the hospital, and for a time, he has no shortterm memory. So every minute or so he asks me "How long have I been out?" (he has been conscious the entire time) and he keeps making the same joke, over and over again. (Well he keeps laughing that it was good thing I was there, since I was a first aid instructor and stuff, more of a quip than a joke, really). I was so glad when they came to take him for further tests, there is only so long you can take hearing the same question and joke over and over again, and know that whatever you say is pointless as it won't be remembered.

Comment from: A.G. Hopkins posted at September 29, 2005 5:19 PM

This isn't a story about Alzheimer's or commiserating with Eric because I'm also scared, or getting old, or any of that, even if it's true.

Eric says that Randy hit one out of the park because of the type of feedback the strip generated, here and elsewhere. Which is true.

If I could ever elicit a thoughtful pondering of anything I ever wrote, I'd feel fulfilled as a writer. I know Eric knows what I mean, (read Gossamer Commons for verification of this,) as does Weds, or Channing, or any other person here who writes.

Eric has just penned a huge monograph on his feelings about this, and how the story has affected him, personally, and he's obviously put a great deal of thought into this.

That's got to be the best compliment anyone could pay.

OK, so all that was self-evident, even if partly stated already, but it just struck me as very much a home run for Randy, and very cool that Randy had done what so many writers only dream of. I just thought it ought to be expressed out loud.

Comment from: A.G. Hopkins posted at September 29, 2005 5:26 PM

siwangmu, my grandmother is also having difficulties like that, but it's usually about her kids. She can't keep track of how many she has, or their ages, or where she is. She keeps asking where they are, or saying she needs to go home now.
The vitality thing is true, also. She was sharp as a whip and then my folks put her in a nursing home, and it sucked the life right out of her. She got old almost overnight.
I understand the pain and heartache that kind of thing brings.

Comment from: larksilver posted at September 29, 2005 5:39 PM

When things finally progressed to the point where Gran had to go into a home where she could have 24-hour-supervision.. she turned her face to the wall, literally, and made it about 5 days. She wouldn't eat, or do anything. She just.. quit.

She'd been so independent, strong-willed, got herself a divorce from a drunkard husband who hit her - after she knocked him down - in the days when women didn't DO that.

Comment from: J Ryan Beattie posted at September 29, 2005 5:41 PM

I remember the last time I saw my great-grandmother. She was in a hospital bed. And she was dying. That hurt. She was the strongest person I'd ever known. I didn't think anything could hurt her. But what really hurt was that she didn't know me anymore. She couldn't remember who I was. And she didn't know where she was, or why she was there, and there wasn't any way I could really explain what was happening. I loved her, and there wasn't anything I could do to help her, or even help her understand. I have never met anyone with more personal courage or strength than she had, but in the end, she wasn't much more than a child in an old, frail body. Worse, she was nearly blind. She'd always had problems with her vision, ever since she caught the Spanish flu when she was a little girl. But now she couldn't make sense of the few things she could see. And it had been so fast. She'd been clear in her mind only a year before. Then she started forgetting where she was. You had to remind her of who you were sometimes. Sometimes she'd think you were someone who'd been dead for years before. It was relatively fast. When she was dying, we took shifts, so she'd never be alone. And she didn't know who I was. The woman who'd watched me when I was a baby, who'd taken me for walks, didn't know who I was. She thought I was a nurse. She told me she was ready to go home. But she didn't know I was family. She didn't know me anymore. And that hurt worse than anything else.

She was 93 when she died, just a few days short of her 94th birthday. It will have been three years this monday. I still can't forget the sight of her, so small in the hospital bed, her memories lost in time.

Comment from: Glaser posted at September 29, 2005 6:58 PM

Well, I suppose if we're being morbid...

My grandmother finally lost her war against cancer at the beginning of this summer after her third battle - at least, the third battle I was told of. And when it became apparent several months before she died that this was going to be her last battle with it, my parents made the decision - a decision they never vocalised to me - to keep me away from her. I had one phone conversation with her during that entire period, and it was short, and I regret that, but I was lucky because she was thinking clearly the whole conversation. Both of my parents expressed to me that in most of their conversations with her she was not speaking quickly, would often mistake them for other people or for younger versions of themselves. My mother reported to me that she recounted to me an occurence in which she recollected, in detail, an event that had never happened, as if she were telling someone who would be familiar with it.

My grandmother was a brilliant, strong woman. At her funeral, I heard stories of her past that were stunning - she was involved in woman's rights causes and taught for decades. And I think I would have been devastated if I had ever been forced to actually confront her without her intelligence, without what defined her.

How depressing is it that I am glad I had so few conversations with my grandmother at the end of her life? How depressing that I am glad I never saw her during her final round of chemotherapy?

I'm lucky. The only genetic weakness I have is a disposition toward alcoholism. But I can deal with that easily. In spite of being underage, I have already made the decision to never have a drink of alcohol. I don't want to be in a position where I'm not in possession of my mind. Like you, Mr. Burns, my mind is what keeps me above water. If I lost control of that, I would have nothing.

And I'd rather you came to your own decision on this than take a high schooler's advice, but if I were ever in my grandmother's position, tld they were going to put me on a treatment that had only a slim chance of success at the sacrifice of my mental capability...I'd kill myself, whether they tried to stop me or not.

I never pitied my grandmother. She was a benediction upon all those who were near her. She lived a good, full life. I suppose she was too strong, too stubborn, to just give up after winning at least two other battles of the same sort, but I do kind of wish she had made the decision to end it with the dignity that she had kept for almost a century.

Comment from: vark posted at September 29, 2005 7:04 PM

I liked your post. It shows a greater appreciation for the singularity than most people have. Surfing that curve of medical advances to keep the plumbing going and the mind alert is tricky, but our situation is funamentally different than it was for every previous generation. The longer we live, the healthier, smarter, richer, we'll be. You greatest risk of death from heart disease is in the next ten years. I've had this conversation with several people. Most are 20somethings, killing themselves with cigarettes and and alcohol and fast cars. One guy's my age (45), rich, smart, and hiv+. One was in his 60s and drank himself to death over a year with really good scotch after his boyfriend died.
There are still risks out there. Plague, flu, nukes, pogroms. But in 20 or 30 years when I need new lungs, that'll be an option. My bigger risks are from my depression getting a whole lot worse before they get a decent cure. One of the things I'm depressed about is that I lost my life savings during a manic/depressive cycle, the money I'd been saving for that new set of lungs 30 years from now. because i think you are right; watch the heart and you can make it 30 years and they'll fix the heart thing, in another 30 they'll be able to add on brain functions that make us look like we already have alzheimers. So it's just, i was going to say vital but that's a truism, crucial to stop doing the things that kill us, like cigarettes,
because it's not a mater of dying 5 years too soon, it's a matter of dying 100 years too soon.
So I'm glad you are doing the things to take care of yourself. Have you read down and out in the magic kingdom? www.craphound.com/down , or Eric Raymond makes similar points in the Cathedral and the Bazzar, about how in post-scarcity economics, you give stuff away to get wuffie (fame, reputation capital.) As The Websnark, your wuffie is pretty high. It's possible the Websnark will outlive Eric - that is, it may be possible to preserve personality after the body gives out.
EndofRant - there is no Eric Conspiracy.

Comment from: lmf3bthelma posted at September 29, 2005 10:17 PM

My father went through something similar to the Gaga and her little dog story. Only it was the deaths of his mother and brother he'd forgotten... deaths that had happened some 15 years before.

Louise

Comment from: Paul A. posted at September 30, 2005 10:16 AM

All these real people doing real things, and I push paper for a living.

You think that's bad? I'm a web developer, I don't even get paper to push...

Comment from: larksilver posted at September 30, 2005 12:02 PM

Well... I also do the "kiss kiss make nice" thing a lot, too. There are way too many people in the world who think Secretaries are a) stupid, or b) somehow "beneath" them. oy.

Of course, the smart ones realize that a good Admin is worth their weight in, well, if not gold, at least chocolate.

Comment from: Sean Duggan posted at September 30, 2005 7:02 PM

Just to weigh in, I'm running into this some with my maternal grandmother. She was just fine right up until she wrenched her back... She had to spend about a half year bedbound and I think it broke her. Her memory has been getting worse and it's just weird sometimes. It's not so much that she's losing her memories as that she loses track of conversations very easily. This one time, my mother was over at my grandmother's house and mentioned offhand that she (my mother) ought to call a veterinerian (no I don't remember why) and for the rest of the day, my grandmother would break off conversations and say that she just remembered that someone from out of town had told her she needed to call a veterinarian. She recognizes all of us when she sees us, but she'll remember only details of the conversation, not who said them and in what context. *sigh* It's really hard on my grandfather. He still loves her as much as the day they got married (I'd say since the day they met, but there's actually several long gaps including one broken engagement during which they dated other people before finally getting married) but it's incredibly frustrating and he's finding he just has to periodically get away from the house. Luckily, there's a program at a local nursing home where he can drop her off and she happily spends the day playing cards with people her age. *sigh* I think I could handle it better if she died than this slow decline. At least she's generally not aware of it, although every time I visit, it takes an effort not to correct her when she asks how many years of college I have left...

Comment from: Cornan posted at October 2, 2005 4:21 PM

Ok, I'm a few days late, but as a college student I've been busy. I just wanted to commiserate (My spelling ability is horrid. I'm a child of spellcheck. My apologies in advance) with Eric a bit.

On my mother's side we have heart disease and Alzheimer's. On my father's side we have heart disease and Parkinson's. I, myself, greatly increased my risk of skin cancer by getting 2nd degree burns from a sun burn I got falling asleep by a river when I was 19. So things aren't looking too good there.

Two years ago I watched my Grandfather's slow decline due to Parkinson's. Alzheimer's isn't the only disease which leads slowly to dementia. Not only could my Grandpa not think properly, but his body wouldn't obey him in the slightest either. Visiting him is one of the hardest things I've ever done and I'm VERY glad I did it.

That point of view about "not wanting to remember them that way"? It's so much crap. I saw my grandpa sitting in his bed unable to even hold my hand because his muscle control was so far gone and wondering where Grandma was (she was still back at their house a state away) and why I was there to visit when I had classes going on (which I did, but he didn't realize his own situation and that "my grandpa is dying" is a valid excuse for a release from classes). In absolutely NO WAY has this diminished my memories of my grandfather.

The fact that I remember my grandfather not only as a good, strong, funny man, but also as a man who got horribly maimed by his own body when he was older is more of a testament to his will and his life than simply remembering the "good times" and glossing over the end of his life could ever be. We each suffer some in our lives along with the happy times and to refuse to acknowledge the end of someone's life because it is hard for you seems to me to be a denegration of exactly what they meaned to you and the people who knew them.

...sorry. Went off on a bit of a rant there. In brief, Eric, I feel your fear. I'm just wondering what's going to end up getting me. I just hope that when it happens my family is THERE because I want them to acknowledge me for not only who I was when I was healthy, but also who I am when I die.

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