Thursday, December 3, 2009

My Intentions Were Pure

If I may digress from the state of my body for a moment, I’d like to contemplate the abomination that has been foisted on the art world under the innocent phrase, “The Artist’s Statement.”

It all started when Renaissance art lovers were baffled by the Mona Lisa and couldn’t figure out what exactly it was a picture of.

“It’s obviously a smiling woman, ” said one viewer.

“Not much of a smile. Looks like she bit off something she wants to spit out, but is too polite to do so,” said his friend.

“I like her smile,” said the first. “I think she’s preggers.”

“Why did he even bother painting a woman in the first place?” the second one asked. “Not his usual interest.” They exchanged knowing glances.

So Leonardo, overhearing this, sat down to explain to them what they were looking at.

“My intention,” he wrote, “was to capture the ineffable, indescribable, haunting, yet strangely seductive, soul of womankind, by which I mean all of Mother Nature and, indeed, the Great Maternal Cosmos itself, and thus to translate the deep spiritual yearning that lurks within all of us into a tangible, subtly erotic, provocative, yet ultimately unknowable human image suitable for postcards and parodies for centuries to come.” **

The viewers were impressed, Leonardo’s prices soared, and the rest is history. Art history, admittedly, but history nonetheless.

Thus were we cursed. Artists way, way, way down the food chain from the likes of Leonardo have been struggling ever since to explain what the hell they think they’re doing.

I submitted a painting to a gallery once, with the Artist’s Statement, “My intension was to make a little money with this sucker.”

It was not accepted.

The problem is, if artists were capable of expressing something in prose, they’d be writing prose in the first place, wouldn’t they, instead of getting their jeans all smeary?

Composers don’t have this problem, I think because music lovers are so intellectual, none of them would dare admit they don’t get it. Folks who flock to art galleries, on the other hand, looking for a little cheap wine and something that matches their couch, have no such inhibitions.

But mostly, gallery-goers don’t give a damn about the Artist’s Statement, either. It’s all for the benefit of art reviewers, art writers, curators, and other MFA types. It gives them a springboard for their own ineffable flights of impenetrable prose.

So we poor paint-stained schlubs are stuck with our thesauruses, trying to sound a lot smarter than we are, because the people who put stuff in galleries not only want us to paint something, they also want us to explain what we were trying to paint, and gloss over the fact that it didn’t come out quite like we hoped it would. Presumably, throwing a lot of big words at a painting convinces gallery owners that a) what they’re hanging on their wall really was what you had planned to paint all along, and b) it’s Important As All Get Out.

Of course it is.

Just as writers start out with a perfectly nice white sheet of paper, or an unsullied word processing screen, and then mess it up with words, artists start out with a perfect piece of art. A white canvas. Who could improve on that? (Well, Leonardo and Picasso and a few others, but I’m talking about the real world.)

So, you get a brush and some paint, and you spoil it. Whatever you do, it’s clearly wrong, so you do something to correct it, and now you’ve got two things that are clearly wrong. And so on. You keep correcting and correcting until you get the thing looking OK, and then you pretend that everything was thought out in advance and meant to happen exactly the way it happened.

Then you sit down with your thesaurus and write a bunch of bullshit. With any luck, the painting will match someone’s couch, and everybody’s happy because The System Works.

Then you go back to the studio and spoil another perfect canvas.

At least, that’s how I do it. Other people may really be trying to crystallize basic plastic organic reality (actual artist’s statement). Who knows?

Sigh. Life is short, art is long-winded.

** Leonardo’s actual Artist’s Statement has been lost, but knowing how these things work, that’s probably close. It would have sounded better in Italian.

Saturday, November 14, 2009


Ko-Ko. She's something appalling!
Pitti-Sing. Ah! that's only her face. She has a left elbow which people come miles to see!
Pooh-Bah. I am told that her right heel is much admired by connoisseurs.
---From “The Mikado,” by Gilbert & Sullivan

I am going to donate my brain and my spinal cord to science. I thought they’d never ask.

The decision was a no-brainer, so to speak. I’ve been waiting decades for science to realize what a treasure trove awaits them inside my skull. Actually, I was hoping that the Arts or Humanities would ask first, but Science spoke up and time is running short.

Also, according to the consent form, they may accept my adrenals, anus (be my guest), any malignant tissues, blood, blood vessels, bone marrow, carotid arteries, cerebrospinal fluid, cervix, esophagus, eyes, fat (take it now!), gut, hair, heart, kidney, liver, lung, lymph nodes, muscle, ovaries, pancreas, peripheral nerve, skin, spleen, stomach, thymus, thyroid, urine, vagina (are they going to figure out the mileage, or what?), and any other body tissues not mentioned.

Do I have any other body tissues not mentioned? Apparently so. They say they may even harvest other bits and pieces, too, including individual cells that may be used commercially. Naturally, I’d hope for residuals if this happens. If there’s anything left after that, the world is welcome to them. I am accepting dibs on my left elbow and right heel. It’s first come, first served.

The good part is that they will cremate what’s left over for free. That can probably be done in an ashtray, and they can give a thimbleful of my “cremains” to my husband as a souvenir.

I have to promise to die within 120 miles of the university, but that can be arranged, I’m sure. And I have to be screened before it's official. That is pending. I’m not sure I’ll pass the screening or not. The doctor may run screaming when he or she gets to the part about prior drug use.

It says here, the “post-mortem examination may include, but need not be limited to, the head, eyes, spinal cord, chest, abdomen, arms and legs. ... [however, this] procedure will leave the body is a suitable condition for viewing.”

By whom? Count Dracula? I assume they mean, “suitable for viewing” as long as nobody turns me over.

Since my body has not been in a suitable condition for viewing for a good 20 years, this will indeed be a medical miracle if they pull it off.

Naturally, I would like to be around when they get the results of all this, but I guess that’s out of the question. But it seems the least I can do in the war against ALS. Since I was diagnosed, individuals and foundations have been giving to me hand over fist, and I bless them for it. Giving back ... especially when you’re dead and it doesn’t hurt or cost you anything ... seems a gimme.

My only caveat is that when the university has finished ooo-ing and ahh-ing over my spine, they will, in turn, donate it to the Democratic Party.

Tuesday, October 20, 2009

OMG -- I’m Multitasking

I hate asking people for money, but it still seems to be the best way to fund medical research, especially for less common diseases, like ALS.

And it just occurred to me that I can use this money-begging text as a blog! I’m so far behind, they’ve probably mopped up my little blogspot by now. So here is the official August blog. Can September be far behind?

I am sponsoring a “virtual team” at the ALSA Walk to Defeat ALS on October 25, in Pasadena. The team name is Basically, ALS Sucks.

BOILERPLATE INFO: The ALS Association is the only non-profit organization in the U.S fighting Lou Gehrig’s Disease on every front. By leading the way in global research, providing assistance for people with ALS through a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering government partnerships, the association is invaluable to patients and their families.

I'm asking you to help with a tax-deductible donation. You can make your donation online via the link at the bottom of this message.

Any amount, great or small, helps in the fight. ALSA has helped me hugely with loaner equipment, support groups and much personal counseling from my rep. They are good guys and deserve support. It's either this or a bake sale, and you really don't want to have to eat my cookies.

Trust me on that.

I’ve never been able to do a link on this program, so just get your credit card out and cut and paste to one of the following URLs.

My team page, Basically, ALS Sucks is at:

Thank you so much.

Saturday, July 25, 2009


I suppose I should tell you what this disease is really like, from the inside looking out. No doubt you are all dying to know.

But first: A word from our sponsors.

Harry and Louise are sitting in two bathtubs on a beach, staring glumly at a sunset. Louise speaks first:
“You know, if we had only had affordable health care, we could still live in a house with indoor plumbing.”
“And running water,” Harry mutters.
“Hand me the soap, honey.”
“It’s all gone.”
“Gone,” Louise sighs. “All gone. All because of your lousy, stinkin’ gallbladder.”
“Now it’s with the gallbladder again. Forget about it, OK? Want to make out?”
“I’ve got a headache, and you know we can’t afford aspirin any more.”
“Oh, yeah. I forgot.”
Fade to black ...

OK, back to the subject of me. This is a very strange disease. I am used to normal illnesses, where you feel really crappy for a while, you get honest-to-God symptoms, then you get better. Colds, flu, heart attacks, chicken pox, pneumonia, etc.

ALS isn’t like that. You’re walking around feeling great, and one day you can’t turn a key, and you think, “that’s odd.” You check your keys ... it’s the right one. It just won’t turn. It’s obviously the key’s fault, because you are absolutely normal, everything is fine. You feel exactly the same as you have felt all your life.

Or, somebody says, “you sound drunk,” but you’re not. Or, out of the blue, you can’t lift a tea kettle. Or, if you’re in Lou Gehrig’s league, suddenly you can’t hit a fast ball. That’s not something that’s of concern to a lot of us, but it certainly was to him.

Still you feel great. Never felt better. Everything is working exactly as it should. It’s just that you are suddenly not able to do some normal little thing.

The “symptoms” of ALS onset are so dumb, you figure somebody’s got to be making this stuff up. Like, excessive yawning.

Q: “Hey Doc, I keep yawning. Am I dying?”
A: “Well, we all are, in the greater scheme of things, but in your case, I’d say you better put Forest Lawn on speed dial.”

Sneezing. Hiccups. Suddenly you can’t stand pizza. Or pepper. Or cinnamon. You laugh at the wrong things. Or cry over the stupidest things, only you just don’t cry: You keen, and wail, and sometimes shriek, and you can’t make yourself stop till it all winds down on its own and you collapse, exhausted.

But you feel great.

Whatever little issue you start with, it gets worse. If your speech is slurred, it slurs more, then you can’t swallow. If it’s turning a key, you find there are other “fine motor skills” you lose. My greatest triumphs are finding ways to turn keys (hint: knuckles) and use paperclips (hint: you do it backwards; hard to explain) without having to use gizmos yet. Legs, and arms, it’s the same progression. It starts little and doesn’t stop till it's big.

Still you feel great. Maybe a little pissed about it all, but in general, aside from the fact that your muscles are all dissolving into thin air, you feel pretty good. Some cramps, some muscles tightening up, some aches, etc., but nothing that Big Pharma can’t handle for a price. Except for the overall disease: That's beyond them.

So, my speech is gone, my swallowing is kaput, I have a lot of weakness in my trunk, arms and legs, my fingers are starting to bend all whichaways, except for the middle finger of my left hand, which remains proudly straight and tall. (Thank heavens I still have one vital means of communication left.) And I get short of breath and tire easily.. Probably a power wheelchair is looming in the near future, but I don’t want to think about that right now.

Because ... I still feel great! Why is this?

A few people with ALS say, “Why me?” Others say, “Why not me?” I say, “Why Lou Gehrig, for God’s sake, one of the nicest guys who ever lived? Why not Dick Cheney?”

But then, if I had to go around telling people I had Dick Cheney’s Disease, I probably wouldn’t feel great.

Saturday, June 27, 2009

Tennies, Anyone?

I’m a low-tech kind of person caught up in a high-tech kind of disease. I now have a machine that breathes for me, one that speaks for me (have two, actually, one for the phone and one to go), an implant that swallows for me, a machine that coughs for me, another one that clears my throat (ahem), and a collar that holds my head up so I can survey the wreckage.

I’ve got more peripherals and cables than a 1990 PC. All I need is a little gizmo to scratch my butt and we’d have a fully operational human being. Throw in an inflatable doll, and voila — a Stepford Wife.

I’m wondering, does anybody need the actual me any more? Can’t I just plug it all in and sneak off to a movie while my clone wheezes and gurgles and robot talks?

I don’t use them all at once, of course. In fact, I’ve never tried the clearing-the-throat wand, since I have lost my gag reflex and I’m afraid of inadvertently removing my appendix. The cough assist is another “you’ve got to need this pretty damn bad to stick your face in there” machine. I tried it once and when I had reassembled my features, I found it amazing that anyone would actually try it twice. Still, there it looms, just waiting for me to need help coughing, when it can leap up and clamp on my face like the vacuum cleaner from hell.

Speaking of gag reflexes, and I mean this is a very complimentary way, I’ve put up with all this nonsense so far because Jerry Lewis is paying for it,** but they’ve finally gone too far. I generally go along with things as long as it doesn’t cost me anything and doesn’t hurt too bad, but now they have pushed me over the edge.

Warning: A gruesome piece of information is coming up. Reader caution is advised.

Now, they’re trying to make me wear tennis shoes and only tennis shoes for the rest of my life!

Aaaeeeeiiiii etc.

Stop, stop, people! I’ll tell you everything! Bin Laden’s in Burbank! Saddam bombed Pearl Harbor! Cheney’s a lesbian! (Oh, wait ... there’s another one?)

Not that I’m yearning to trip around in spike heels with sexy little ankle straps. Much more importantly than that, they’re taking away my Berkies! My Berkies! And there are still cute shoes available for women of a certain age... slides and flip-flops and stuff ...; that make you feel good about having feet. In fact, I bought some of them a year ago, when I was diagnosed, since I really didn’t have any decent shoes to be sick in. I think you must always dress the part.

Alas, I find out now the part requires tennies. And to make it even clearer to me, they have attached my brand new leg brace (a charming new accessory) to a left tennis shoe. The right one will be arriving in September. Brace, not shoe.

I limped out of the ortho place (I wasn’t limping when I went in to pick up the brace, by the way, because I was wearing cute slip ons that allow people to walk normally) in a stiff-legged waddle. When I get the right brace, I’m sure I won’t be able to take a step without falling on my face. Perhaps that’s the point of it all. Keep me off the streets.

A leg brace is a long heavy black thing from the knee down that wraps under your foot and holds the toes up. Long suspenders would probably work as well or maybe I could sling a toe bikini around my neck like Borat. The brace straps on with Velcro, natch. I’ve now reached the pitiful point where I have to use pliers to undo Velcro.

It turns out... insult to injury ... the brace squeaks loudly. So do the shoes. The combination comes out to a long swakkkeeekkk swakkkeeekk.

This is added to the unusual noises one’s body makes with ALS. I haven’t mentioned these before, but it’s time you know. My neurologist has explained this to me three times, and I still don’t get it, but there is allegedly a little muscle in our bodies that normally keeps our breathing quiet. With ALS it weakens, like all our “voluntary” muscles, so you get noises when you breathe. In my case, I’m getting a plaintive grunt on every exhale. (If this muscle is voluntary, you’d think I would have known about it before now.)

Anyway, I’m now walking around going: swakkeeekk grunt. Swakkeeekk grunt. Can’t wait till September when I have two squeaking, swacking braces.

If they ever feel like continuing the “Halloween” movies, I can surely do the sound effects as Michael Myers sneaks up to mass murder another unsuspecting blonde teen.

Speaking of Halloween, I’m planning to wear all my ALS gear simultaneously this year, starting with the Darth Vadar breathing mask, to welcome the little kiddos and send them screaming into the night and eventually into therapy.

Or perhaps I should just Swakkeeekk Grunt up behind them in the dark. I've got a couple months to decide.

** Muscular Dystrophy Association (Jerry Lewis’s foundation) provides massive support for patients with ALS and similar "orphan" neurological diseases. There are about 50,000 ALS patients in the US, compared to over a million with Parkinson’s, so funding for research is always an issue, and MDA is truly a blessing. And bless Jerry Lewis, from one of his kids. J’aime “Le Professeur Dingue.”


FYI--There’s going to be a big fuss about ALS on the 4th of July. Major League baseball will be remembering the 70th anniversary of Lou Gehrig’s farewell address at Yankee Stadium with ceremonies at all home games that day. It is coordinated by ALSA ... the ALS Association ... which, along with MDA, makes a humongous difference in the lives of ALS patients.

Thursday, May 7, 2009

Ode to My Morning Clog

(A Work in Progress)

O, my little feeding tube,
My precious link to life.
How I love your wayward ways,
(Put something here that rhymes with “ife.”)

O, tube of glory, chute of food,
Ensure and Boost and Cokey flow,
Whatever would I do without you?
Obama’s got a dog named Bo.**

Your quirks, your clogs, your spills and drips,
Your slimey goodness stains the rug.
Pretty as a bullet hole,
A second belly button ... ugg!

A gourmet treat three times a day,
Which taste buds never know,
Pick one: white or brown or pink,
The flavors really blow.

But still I hug you to my tummy,
Stroke your clamps and nozzles,
You dangle from my abdomen
Like a ... (Quick, what rhymes with "ozzles"?).

** OK ... you write something better. Cheesh. Everyone’s a critic.

Sunday, April 12, 2009

Intelligent Design Run Amok

So far, I’ve lost my speech, and my voice is fading away fast. Now my opposable thumbs are going. That’s ten gazillion years of evolution down the drain right there.

It’s not easy getting from a one-celled amoeba to me (and to you, too, of course). Once they wiggled out of the ocean, I’m sure our ancestors wore their butts off just getting rid of the fishy smell, then they had to invent sex (and it obviously wasn’t the brightest bulb on the Christmas Tree who came up with our present system), grow body fur, then change their minds and get rid of it (must have been in a hurry on this one, as they missed a few spots), learn to walk on their hind legs, and finally -- tah dah -- invent credit default swaps and the amusing concept of “toxic assets.”

Anyway, ALS is certainly a good argument against intelligent design: if we had been designed intelligently, all our parts would wear out at the same time, not one at a time in agonizing slow motion. Or, even better, they wouldn’t wear out at all. Plus we wouldn’t have all these left-over appendages and organs.

Intelligent Designer Fans: S’plain the appendix. Even its name indicates this was never going to be one of the major players in the body. But it has no purpose whatsoever except to rupture occasionally and try to kill us. That is its sole function. What do you think the I.D. had in mind for it when he stuck it in there? Was it something like the forgetful surgeon leaving a sponge behind in your abdomen? Another “Oops Moment” of creation? Or did all the other organs not fit right, so he had to invent a little filler organ that does nothing just to keep things from rattling around?

What about wisdom teeth? What intelligent designer would put more teeth in our mouths than our mouths have room for, so the first thing we have to do when they appear is run and have them removed?

Or, male-pattern baldness? Cellulite? Color-blindness?

More importantly, ... if we were lovingly created by an Intelligent Designer, why did he invent cells that turn malignant? I call that a really serious design flaw.
And to be really serious: Why would our Intelligent Designer invent childhood cancers? Explain the design principle behind that.

I have no problem with a Higher Power ... my HP and I get along swell, and I call on him/her throughout the day and night ... but as far as the human body goes and its disabilities, failures of function, malignancies, and generally SNAFU-ness, it seems much more likely that we were cobbled together over the millennia by hit-and-miss, trial-and-error, spit-and-baling wire evolutionary forces. The human body is not something I would hold up as a sterling example of intelligent planning.

I can see it maybe designed by GM, but that’s as far as I’ll go.

Friday, March 27, 2009

You’re Fine, Thanks. How Am I ?

While losing my speech, I’ve noticed a strange reaction among people I talk with. I didn’t put quotes around the word “talk” here, because I carry a text-to-speech device with me, so I actually do participate in conversations out loud by voice, albeit slowly because I have to type my answers, and albeit not in my own voice. Still, it’s a voice.

A fine example of this reaction, which I call Sympathetic Speech Impairment, or SSI, happened yesterday at the dentist’s: As I was leaving the operatory after a consultation, the receptionist, who is a dear woman and as kind as can be, was making sweeping motions back and forth with her arms, indicating I was safe at first base. As I approached her, she sawed her arms back and forth more vigorously, then started scribbling a note. I was wondering if I should slide as I approached the reception desk or if I’d already beaten the throw, but when I got there, she triumphantly held up her note: “No charge for visit.” Ah, so.

“Free” is my favorite word in any language, but that’s another issue. This issue is why are people writing me notes to communicate with me? I’m the one who can’t talk, not them. I’ve explained to people that I am not deaf and dumb, only dumb, which I mean in the most politically correct way possible. SSI afflicted my husband when my voice became seriously unintelligible, and I started relying on hand gestures to augment conversations, pointing at things and flapping my hands in the air. while I tried to talk He started using hand gestures back at me without speaking, and I had to remind him that he could still talk ... it was me who couldn’t and who therefore had to flap.

Even my brightest friends slip into this confusion (is she deaf or is she dumb?) sometimes, making the telephone gesture to the side of their head when they say, “I’ll call you,” (Yes, I figured out instantly that you mean that you’ll call by phone rather than standing in your backyard yelling my name), or turning-a--steering-wheel gesture when they ask, “Are you still driving?”

I can’t really complain about people feeling awkward around the disabled, as I’ve been a doofus all my life when it comes to reacting to people’s disabilities. (Or fame, oddly enough. I am hugely embarrassed to see someone famous, and don’t know where to look or how to act. I generally freeze and become intently interested in something very close at hand. It doesn’t take a lot of fame to do this to me, either. Seeing someone who had a minor role in “Taxi” will cause me to closely inspect my purse zipper for 10 minutes until I feel it’s safe to look up again.)

(I was once in an elevator with Robert Redford, I think. When someone of that wattage enters a small public space, all the air whooshes out and is replaced by some sort of electricity. When he got off the elevator, the other passengers immediately let out their breaths and starting babbling about his looks, his height, his wrinkles. All I could talk about were his shoelaces, as that was all I’d seen, aside from a horrified first glimpse of his famous mug. And who knows if it was really him, anyway? To me, they didn’t look like the kind of shoelaces a famous person would wear. They just didn’t shout, “Robert Redford is wearing me.”)

But I digress.

This confusion about whether I can hear or speak or understand or respond even extends to my robot telephone text-speech persona. Typically, the answering machine will be on by the time I reach my robot phone from the other end of the house, and I and my robot voice will interrupt the message they are leaving, by saying something like: “Hello, I’m here on the phone.”

“Oh, hello. This is the pharmacy. Would you ask Beth to call me at xxx-xxxx, I need to ask a question about a prescription.”

“This is Beth. You can ask me now.”

“Thank you. Please have Beth call me back. Thank you.”

“No, don’t hang up. It’s me. I’m real, I’m alive, I’m here, I’m all ears (and a few electronic components).”

“Thank you.” Click.

The conversation doesn’t run that smoothly, of course, because there are long pauses while I type out answers, and because nobody ever expects to be suddenly talking to a live robot.

Or standing next to Robert Redford’s shoelaces, for that matter.

Life is full of surprises, isn’t it?