Wednesday, December 23, 2009

In case you're not on my email list...

Dear Friends,

Well, it’s mid-December, and so it’s time for my third annual Holiday Letter. As I write this, I’m laying in bed. My trusty assistant, Louel, is typing for me. In the last year, there have been so many losses. I now do pretty much nothing for myself. Caregivers spoon-feed me, help me on the toilet, get me in and out of bed, dress me, and take care of all manner of Carla-maintenance. Some of these things are more difficult than others to handle, but you would be surprised at which ones are the hardest. Believe it or not, maybe the worst thing of all is not being able to pick my own nose. C’mon, you all do it. You just don’t let anyone see you do it. Or at least that’s what you think. When you’re stopped at an intersection, do you really think that your windshield and side windows are suddenly tinted? I see you with your index finger deep into your nostril up to your middle knuckle digging away. My problem is I can never be alone to do that. And can’t lift my hand high enough to get my finger into my nose. I think this is worse than not being able to walk. Scratch that. I know it is. And speaking of scratching, it sucks not to be able to scratch an itch.

So, here I am, in a wheelchair, unable to do anything other than talk (with a short of breath slur that makes people ask me to repeat myself a lot), think (which I do so well I can’t get to sleep), listen (which I love except when listening to somebody stupid enough to be stupid but not stupid enough to mock), and love (a renewable resource that grows exponentially as my ability to do everything else diminishes). I’m in hospice now and it’s pretty likely that I’m writing my last Holiday Letter. I don’t mean to get morbid, so I’m going to phrase the rest of this letter in groupings of fun facts.

Fun fact:

Losing things is important. All the major religions understand this. The Catholics have Lent, the Jews have Yom Kippur, and the Muslims have Ramadan. Voluntarily losing things or giving things up is a gift you give to yourself. Think about all of the things in your life that serve as some kind of itchy fiberglass insulation between you and your happiness. Imagine setting those things free, depriving them of their importance. Then imagine how liberating it is to be free of that dependence: just like how sweet it is to taste food after your lips have denied it.

I lose things all the time and it has made me a stronger, better, happier person. But none of these things were my choice. Religious ritual demands a conscious sacrifice, not one based on fickle fate. So I have decided to give up something that defines me. It has been the source of my confidence and my self-esteem. It has been the thing, more than all other things, that has distinguished me from the pack. I am giving up my hair, which I will donate to somebody who needs it. It’s the first voluntary sacrifice I have made since I got sick. The other night, I watched “My Sister’s Keeper,” a mediocre film with a central theme, which, while not fully explored or exploited, was worthy of a Greek drama. At a certain point in the film, the young girl who has suffered her whole life from leukemia says, “Just once, I want to look pretty.” And so her mother buys a beautiful red wig, the thickness, color, and curl of which is like my own hair (which, by some miracle, has not yet gone gray). It made me cry. And at that moment, I knew that I had to give somebody my hair.

We need to lose things to know what we have. And I have a strong feeling that when I am a short-haired person, I will be just as strong and just as loved as I was before. Plus, I get the joy of knowing that someone will have gorgeous red hair because of me. Plus, it will be much easier to puke.

Fun fact:

As I get closer to death, I believe that religion is everything and nothing at the same time. Religion has helped people I know kick addiction. It has gotten them through dark days and unbearable losses. It has helped them create some kind of container for the unanswerable questions that whirl around a taunting universe. Religion is also nothing because it doesn’t matter which one you choose. It’s kind of like going to Starbucks. No matter which one you go to, your non-fat mocha machiatto half-caf, half-decaf with extra whip will taste the same. “Oh really?” you ask. “What if it’s at a gas station on I-5 South?” Haha! Trick question. I happen to know that there are no Starbucks between here and Los Angeles along I-5 so my broad generalization about religion stands. In your face, lifers! (That’s what I call you healthy people…) Anyway, back to religion. It is absolutely irrelevant whether you pray to the East, don’t eat shellfish, or hide festively colored eggs in tall grass. Religion and death are both everything and nothing. If I die and discover that Oral Roberts was right all along, then I believe I will still go to Heaven because I’ve done no real harm on this planet and I’ve done a lot of good. If I’m kept out on a technicality, then heaven sucks because hanging out with Oral Roberts would be the ultimate buzz kill. There’s a wonderful quote from Arthur Miller’s play, “The Crucible,” when Elizabeth Proctor is asked if she believes in witches and she says, “I say, if I can live in this world and do only good and be named for a witch, then I say there are no witches in the world.”

Now let’s say the Buddhists are right and my lack of enlightenment causes me to be reincarnated as an ant, which concerns a couple of my loved ones. I’m pretty sure that if I’m an ant carrying a breadcrumb up a hill in a line with several of my ant colleagues, I will not be muttering under my breath, “Fuck. I’m a fucking ant.” That’s the Buddhist loophole. You have no memory of your old life, so who gives a shit? If the Buddhists wanted to encourage better behavior, they would have made us remember past lives so we could alter our behavior accordingly. That’s what you get for forming a religion before the creation of any of the Back to the Future films. Doc Brown and Michael J. Fox seem to understand a hell of a lot more about inter-dimensional behavioral consequences than Buddhists. (And no, I’m not talking about Michael J. Fox’s Parkinson’s. He, like me, is randomly lucky enough to be born Canadian and also like me randomly unlucky with the whole slow-debilitating-miserable-fatal-illness thing.)

Finally, if the Existentialists are right, and the after life is a vast, unremitting void—a black hole if you will—a place that is, by definition, the absence of awareness, then I’m not really going to give a shit, am I? Conclusion: People take death way too seriously. It’s really the transition that’s awkward.

So there are two things already that I don’t fear: Loss and Death. I told you this was going to be fun.

That doesn’t mean that there isn’t a tremendous amount I regret saying goodbye to. Numbers one through one hundred are of course Maclen, Maclen, Maclen. I heard my dear Dad talking to someone about the unnatural order of a child dying before a parent, but what about the unnatural order of a parent dying before their child has grown to be a man or a woman? I’m lucky because Mac is a man and if you read his recent blog post to me you know that he is also a wise man.

Not so fun fact:

I will miss so many events in his life that would have been major memories for me. I learned something, however, by reading his blog post ( as well as your blog comments about memories. I realize now that a lot of big events and a lot of major rites of passage happen invisibly. We don’t even know they are happening. A walk along the Embarcadero, a blown out bicycle tire, a knock on the door from an unexpected visitor. These moments are the major events when we open our minds and hearts.

Fun Fact:

When I was younger, I used to think that people who said “I love you” all the time were somehow disingenuous. I thought those words and those feelings were like the good china, meant to stay in the cupboard collecting dust waiting for special occasions. Now, I say “I love you” all the time and I mean it. I never did get good china, but if I had it I would use it at every meal. I remember my friend Moira’s dad testing the mighty Corelle Living Ware against the wall, which later inspired me to throw all of our Corelle plates against a wall with great passion and fervor. OK, so I was drunk at the time, but it was still this momentous thing like throwing the vodka glass into the fireplace or stepping on the wine glasses as the crowd shouts “Mazel Tov!” That’s the way we should tell each other “I love you” because all clichés apply here. Our lives are as frail as the finest china but they need to be lived as though they are as durable as Corelle. (This blog is brought to you by the makers of Corelle.)

Fun fact:

The afterlife is only a concept. The things we value are only things. I look at my world and I look back at my life and it’s not the shows or the CDs or the degrees or even the fabulous shoes that matter. It’s you. And You. And You. And all of the people who have been my teachers, my friends, my accomplices and my family. My friend Kim has often compared me to George Bailey, from “It’s a Wonderful Life,” saying I was the richest girl in town. And isn’t that line why we watch that show year after year. Isn’t that why we wonder at the way we get choked up in the same spot as the crowded living room of friends and family sing Auld Lang Syne? Arundati Roy says that "the secret of the Great Stories is that they have no secrets. The Great Stories are the ones you have heard and want to hear again. The ones you can enter anywhere and inhabit comfortably. They don't deceive you with thrills and trick endings. They don't surprise you with the unforeseen. They are as familiar as the house you live in. Or the smell of your lover's skin. You know how they end yet you listen as though you don't. In the way that you know that one day you will die, you live as though you won't. In the Great Stories you know who lives, who dies, who finds love, who doesn't. And yet you want to know again. That is their mystery and their magic. ..."

We watch Peter Pan because there is a part of us that mourns growing up as we would the death of something pure and we clap louder than our kids when Peter asks “Do you believe in fairies?” There is a part of us that hopes every time that Romeo finds his true love dead, she will suddenly awaken and say “Don’t take that poison you dumb shit, didn’t you read the fucking letter?” You and Maclen have been my great story and until I stop breathing, I will marvel at the good fortune I have had to know so many amazing people and to have given birth to the most amazing guy I have ever met who is not just my son but my friend.

From now on, I will tell the story of how the worst shit storm rained down upon me and how the shit transformed into chocolates and butterflies, great friends and caregivers. I will tell the story weaving in the other great stories. I will tell the story that keeps being told again and again since Lou Gehrig referred to himself as the luckiest man alive of how a very bad thing couldn’t touch a very good life. Ha ha ALS, you suck, I win!

So in the words of Romeo, “Eyes look your last, arms your last embrace” and to paraphrase Frank Capra’s ZuZu, “Do you hear that bell? Teacher says that every time a bell rings, an angel is getting laid in heaven” and I leave you with my favorite line from Peter Pan:

“To die would be an awfully big adventure.”

Thank you all for being so good to me and Mac and happy whatever-the-fuck you celebrate.

Love Carla Bailey-Pan

Ps: Buy the damned calendar! Dying request here!

Monday, December 14, 2009

Maclen Muses: Happy Birthday, Mom

The following is a special guest post by one Maclen Jacob Zilber. He guessed his mother's password, for the purpose of surprising her with this blog post when she woke up. What a rascal...

How can one take the life of a woman who put 80 years of happiness and 80 years of pain into 46 years, and even attempt to sum it up?

That was how I started a speech about you, Mom, about a year ago to this day. I guess it's 47 years now, eh? I am still a little bit daunted by the notion of summing up your life, nor could I necessarily do it justice, much as I suggested before. At this stage in your life, you have little use for material goods, nor were you ever much of a materialist, which, to coin a phrase, begs the question: 'what do you get for the woman who has everything and nothing?' The answer is that I have the memory of an elephant, and, while I can't "even attempt to sum up" your entire life, I can give an honest try at writing the story of our life, in reverse chronological order.

[Muselings: While you're reading these little snippets, try to think of a memory of you and Carla, or of how Carla affected you, that stands out. If you feel comfortable sharing it, I'm sure it would put a smile on her face to read it in the comments. An additional note is that this post, because it's written primarily for Carla and only secondarily for her readers, there are some parts that the lay reader may not understand.]

I remember....

A couple of days before I left for college, we went to The City to see "In The Loop." We both knew at the time that it was possibly the last time that we would ever go somewhere alone, without you requiring any assistance, and, frankly, it was quite scary at the time. We walked along the Embarcadero, for a longer time than was necessary to find the theater. This was partially because it was one of those rare days in San Francisco in which the weather measures up to the city itself, and already-friendly Franciscans walk with a bit more pep in their step, as if a ceiling of fog ordinarily kept them from standing up straight, and in its absence, were relishing the freedom of being outside for the first time. It was also partially because the iphone's GPS was getting us lost, and the theater was not particularly easy to find. We had some conversation while walking, but mostly we just soaked in what was likely the last truly great day that we were going to have together.

We got to the theater after going through a series of confusing elevators that would have been in a Marx brothers movie, if the Marx brothers were around in the age of elevators (If I said that sentence in conversation, you probably would look at me indignantly and say, "The Age of Elevators? Who are you, a Sci-fi writer from the '60s?" I would probably respond, "That joke would have worked a lot better if you had used a specific name, like "Arthur C. Clarke"). On the topic of the Marx brothers, the movie, in many respects, traced its roots all the way to "Duck Soup," the last war satire with the same cocktail of levity and import.

After the movie, we went to a very expensive restaurant. You were in a wheelchair (duh), and I was in a t-shirt and jeans (lack of style sense is a disability too, okay!), and the staff of the restaurant seemed curious about why the hell two people who weren't dressed all that well would dare set foot into their establishment. It must be a special occasion, the waiters seemed to think. Otherwise, how would the riff-raff get in? You explained to them that I was leaving for college, and were amused when they thought that I was your brother.

In fairness, though, I once thought that I was your brother when I saw a picture of a seventeen-year-old Jason Smith and he looked exactly like me. "I don't remember wearing those clothes!" I confusedly remarked. "That's didn't...that picture was taken well over 20 years ago."

The following day was the worst day since the day of the diagnosis. We watched a movie and I cried. We went to a sushi restaurant, and I cried. We'd laugh at a joke, and I'd cry. I knew that there were still going to be more days with you, but I also knew that they were numbered, and that I was now transitioning out of "our life," and into "my life." But while we were at that sushi restaurant, in a lull in which there was no conversation, I looked across the table and felt a smile wash through my face like hot cocoa. I realized, as I sat there and we just smiled, that everything was going to be all right. Everything was going to be fucking terrible, but it was also going to be all right.

When we got home, and it was time for me to leave, I made a joke about buying one of those Calendars with every minor holiday on it, and coming back for the "Festival of Stockholm" (sorry Swedes, it's minor). We hugged, and I left.


I remember...

Going to Orlando to see the "Holy Land Experience Theme Park" with you and Jamie. There isn't a whole lot of ground on this that hasn't been covered, but I have to say that my best memories of the trip are not the souvenirs or the amazing video footage, but just sitting around the sports bar watching basketball and exchanging witty banter with you. I think that years from now I will still remember the following scene, though I'm not sure how much good this will do for your reputation:

[Carla, Mac, and Jamie are walking back to their apartment in a themed Disney Resort. Okay, they're not walking back to their apartment, they're trying to find somebody who can unlock the door to their apartment, since the door is locked from the inside. An adorable little boy, about eight years old, is walking by with his dad.]

Father: [unintelligible]
Adorable little boy: And that would cost 200 moneys!
Carla: That kid's a [can't finish, laughing too hard. Catches breath] That kid's an [same thing happens again, can't talk because of laughter]
Mac: That kid's a what?
Carla: That kid's an ihh [laughing] that kids an ihh [keeps laughing]
Jamie: This can't possibly be as funny as you're making it seem
Carla: [several minutes later] That kids an idiot! [laughs hysterically some more]
Jamie and Mac: -Mocking comments you would expect after somebody called a little kid an idiot and laughed uncontrollably for five minute about it-


I remember...

Sitting in our old apartment on Kains street, around October or November of 2008, and having you ask, "you know where I think a great place to go during the winter would be?" I have a fun little eccentricity where, whenever people ask questions that are practically unanswerable, and are functionally intended to get the person who hears the question to ask a question to the questioner, I will guess, rather than asking the intended question. I said, "Sydney?" And you said, "yes, how did you know?" With that, it was decided that we were going to go to Sydney, how could we not?

As for Sydney, I don't think that there would be much to be gained by me talking about the wildlife reserve or the hospital, because you probably have memories of those incidents that are nothing short of Crystal clear. Instead, I'll try to jog a couple of random memories:
- Remember the cruise ship, where they couldn't move the wheelchair to the upper deck, so you, Papa, Lisa, and I got the entire dining hall to ourselves? Remember the ridiculous Australian anecdotes the recorded voice mentioned? Remember the fun we had at its expense?
- Remember watching the movie "21" on pay-per-view? Not a particularly good movie, but I remember it being one of the first normal things that happened on that trip
- Remember the GPS device that spoke in an australian accent, and therefore pronounced "recalculating" as "reCOWLkyulaiting?"
- Remember Lisa Klein's insistence on finding "Spelt in Gleeb," not because she knew that Gleeb had particularly good spelt bread, but because she thought it sounded good?
- Remember our conversation about how, in honor of the phrase "Bringing Coals to Newcastle," we should bring a Nat King Cole album to Newcastle?


I remember....

When I directed my first play, "Tape" by Stephen Belber. This was the first major bit of theater that I had done without you being in some way involved. Yet, on the very first rehearsal, something odd happened. I realized that I knew how to direct. I had picked it up by osmosis, from standing next to you for a decade while you taught theater classes and directed plays. It was at this juncture in time that I realized that, even without you being present, you would always, in a way, play a role in my decisions. That your wisdom would always be with me. Because it was a one-act play, you and I doubled as back-to-back stand-up comedy routines to warm up the audience for the show. We laughed at the jokes that nobody laughed at and crossed our arms at the jokes everybody laughed at. One joke, a tedious but memorable one straight out of the tradition of Henry Youngman, will forever stay with the people who attended the show.

"My son will now assist me for my final impersonation. Mac?" you asked, as I came out of the audience and lifted you out of your wheelchair. "Ta-da, my imitation of stand-up comedy."


I remember...

I remember being present for your final concert, and even I wasn't immune from being mesmerized by the effect of the last song. As the last song came to a close, the crowd was silent. Then, as if in a movie, all in the house stood up and broke out into rapturous applause, giving due recognition to the coda of a truly special career in entertainment. I remember thinking at the time, "This would make for a great climactic scene in a documentary." I kid you not.


I remember...

The final showing of our Opus Magnus, "War and Peacemeal," a satire on war that, come to think of it, makes me eat my words about "In The Loop" being the only modern war satire that measures up to "Duck Soup" in import and levity. Yeah, I just compared a silly work we wrote to one of the greatest films in the history of the cinema, what are you going to do about it?

Anyhow, I'm sure that you remember with crystal clarity the ending of the last show. What you probably don't know, however, is that, backstage during the last show, I cried during your original composition, "I Will Find You." I couldn't see you or hear you, but I know that you did too. All of the "it's a Disney-style song" derision I could muster could only last so long against a song written by my own mother about a mother saying goodbye to their kid. I'm sure that, years from now, I will listen to that song on your new CD (which, readers, if you're roped in, can be downloaded for only along with a whole new album of Carla originals, "Love, Death, and Wings," for $9.99 at this address) and still cry from it. That makes it the norm, rather than the exception, among your songs.


I remember...

Sitting with you in our small apartment on Kains avenue, along with Sofia Alexander, the three of us seemingly drowning in paper, creating the script to a a wonderful full-length play, "War and Peacemeal." In three days. Back then you could still walk, but it was sort of ill-advised for you to do so, and you often used a scooter to get around during rehearsals. This was really the first creative project in which you and I were equal partners, and I was relishing it. [This will come as a surprise to many of you who watched "War and Peacemeal," but my contributions to the play were most of the soundtrack and the tearjerking bits, while Carla's contributions were the sophomoric jokes and the plot structure. That being said, these contributions intermingled a lot, and she and I still argue to this day over who came up with certain parts of the play.] It was truly a 50-50 enterprise, with neither of us writing an outright majority of the script. It still puts a smile on my face to think of those piles of paper strewn about the floor, the brainstorms and breakthroughs we had, and the wonderful lightbulb feeling when we (okay, if you insist on giving somebody credit, I) stumbled across a way to end a hilarious play with the audience in tears.


I remember...

The first day that "War and Peacemeal" became even an abstract idea on the horizon. Eleven days before you were diagnosed with A.L.S. (Two years ago today, in fact, but who's counting?) I bought you "The Complete Works of Aristophenes." However, either because I was a [politically correct censor] giver, or because, for a Professor Emeritus of Theater, you don't like to read much, I ended up being the first person to crack open the book. I skipped over "Frogs," "Lysistrata," and everything else that might have been made into a play before. Instead, I zeroed in on a piece called "Peace," (ooh, it's a homonym, he's so good!) a play so unknown that our play opened with "Anybody who has read this play before, raise your hand." Most nights, nobody would raise their hand. If somebody did, the actor reading the monologue, I would say, "psh, you're lying. Nobody has read this play since John McCain was in grade school." In the morning, I excitedly presented you with the idea for our play, and we immediately shot ideas back and forth, hashing together some semblance of a plot in no time. With another mother, OR another director, my idea would probably be met with a response along the lines of, "oh, that would be funny. Good idea," and no further action. With you, the idea was allowed to turn into a capstone worthy enough for you to un-retire from directing, just for this last show.


I remember...

The day that you were diagnosed with A.L.S. I had gone over to the house of our friends the Cardalls in the morning, and was bizarrely told that I needed to return at 1 P.M. because my grandfather was leaving town, and I needed to say goodbye to him. I guess you can't expect a group of people who just heard the worst news of their lives to come up with the most plausible excuse.

I remember walking into our apartment, with you sitting on the couch, and a look on your face that l knew meant that something truly horrid had happened. I couldn't think what it could be. Had one of my grandfathers died? You sat me down, and told me.

"I have A.L.S."

I didn't know what that was. See what I mean about why we need more A.L.S. awareness? I went on the next two to three minutes of our conversation as if A.L.S. was something like Chronic Fatigue or Crohn's Disease. Then you said the words that changed everything.

"I may have as many as ten years to live."

It sunk in that you were going to die. There was nobody in the world I was closer to, and I was going to lose you. Probably sooner, rather than later. Even for somebody who had never used the word "mom" in his lie, I had the only reaction that anybody could have in that situation. I threw my arms around you and began to weep uncontrollably, saying "Mommy, mommy."

I know for a fact that you know what you said to me after you calmed down. You told me that you were going to lose control of your limbs, until you were completely paralyzed, and that, while you were still healthy, you wanted to go boogie boarding in Mexico. I suggested, movie buff that I am, that we go to Zihuatanejo. And so it was decided. Just like every other dark place, you managed to blast your way through it so that there was some light.


I remember....

Going to Sayulita, Mexico, because the boogie-boarding waves were bigger than those in Zihuatanejo. Best decision of our lives. This quirky town off of Puerto Vallarta provided the memories of a lifetime, and some day I will scatter your ashes in the city where I had the best vacation of my life.

I'm sure you remember:
- The Sayulita Days festival, one in which not a single "Gringo" outside of the two of us dared to attend. It was like a theme park out of a Steve Buscemi movie. There were rickety roller-coasters that looked like they'd crumble under the weight of two tall tourists. There was a booth, billed as "El Niño Tarantula" in which a little boy stood in a refrigerator box with badly designed spider arms coming out of the box. There was a contest in which you threw beer bottles at other beer bottles, and the prize was a painting of Jesus Christ with a crown of thorns causing him to bleed profusely. You get the idea. You presumed that there was probably some organized crime going on, given the way everybody looked at the two of us so suspiciously, and given the way all of the other tourists avoided the festival.
- The wonderful cuisine. Who would have guessed that a tiny rural town in Mexico would have great italian food, french food, and californian fusion food? I ate sushi for the first time in Sayulita, and now it is a staple of my diet
- Cheeseburgers! The restaurants in Mexico were simply clueless at the idea of ordering a hamburger without cheese. I'd say "Sin Queso, No cheese, no queso," try pantomiming, etc, but, in the end run, like a bad Saturday night live sketch, every hamburger restaurant in town could only make cheeseburgers.
- Our lovable hotel owner saying, "I don't like the chicken fights," and you responding, "Yeah, it's violent." His priceless response, "I prefer the bulls."
- The loud megaphones that played at 6 in the morning that sounded like the type of thing you'd hear from a military junta in a war torn African nation. Instead, it was just people selling fruit.
- The fact that Fox News appears to be the only channel in the English language that gets transmitted down in many parts of Mexico, how weird is that?
- Watching "Mean Girls," and actually liking it.
- Going on the types of waterpark rides that probably would not pass a safety inspection in the United States. Right before they pushed us down the dangerous-enough waterslides, the man who pushed us down on our inner-tubes said "hold on tight," something that you weren't capable of doing. You said afterwards that the thought process went through your head, "well, if this is it, there are worse ways to die."

Ironically, the attempts at boogie-boarding couldn't have failed more miserably, nor could they have succeeded more triumphantly. As you discovered after you got into the water, you could no longer swim. As huge waves, the type of waves for which surfers sought out this tiny village, crashed upon us, you and I began to laugh uncontrollably. It wasn't necessarily at the irony of coming to a town known for its waves when you could no longer swim. Okay, maybe a bit. It wasn't necessarily out of nervous fear, as you could have easily been badly hurt. Okay, maybe a bit. What it was really about was us laughing at the world. The dolphins and the beaches may not have healed you, and they may not have given you a way to beat A.L.S. physically, but they showed us that the world couldn't keep us down. Nobody, not even death, could stop us from enjoying ourselves, from laughing at it all.

And we continue to leave them laughing, don't we?

Happy Birthday, Mom.

Guest Blog by Jeannine Frank

My friend, Jeannine, is quite brilliant with lyrics.
Here's her birthday tribute to me, which you'll all enjoy.
Hum the Mary Poppins' tune Supercalifragilisticexpialodocious as you read it.

(if anybody doubts it quickly log on to her journal!)

When celebrating Carla it's so hard to find the phrase
That sums up all the feelings over many years and days
A singer, writer, comic shining bright upon the stage
Before this fuckin' drama threw our world into a rage -- when

Super crappy ALS that awful diagnosis
Burst upon the scene with its unscrupulous prognosis
If we scream out loud enough we’re sure to get ferocious
Couldn’t she have something else – like zits or halitosis?

Was seven or eight years ago a friendship did begin
She called to book an artist at the College of Marin
We stayed in touch occasionally and then there came a day
Her Wedding Singer Blues found a production in LA

And Super Carla’s magic on the stage was so terrific
All the parts she played were universal yet specific
Talented and sassy and incredibly prolific
She could star in Annie, Guys & Dolls or South Pacific

She has a son named Maclen who’s a chip right off the block
My guess is he was in the womb when he began to talk
He cracks her up completely even though it makes her cough
One day he’ll rule the world and we’ll be so much better off

Our Super Carla's magic touches people round the planet
Living every day as though her nerves were made of granite
Blogging all her insights -- we're so grateful she began it
Would that we could grab that ALS and fucking ban it!

So now she is a movie star for all the world to know
She’s also made a Calendar – which should raise lots of dough
She’s just so damn productive that it puts us all to shame
But we are all inspired everytime we hear her name

Yes Super Carla Zilbersmith there’s just nobody like you
I’m forever pissed that fucking ALS could strike you
All the lives you’ve touched are too innumerable to measure
Super Carla Zilbersmith you really are a treasure!

Wednesday, December 09, 2009

Buy My Calendar Please

I was in the hospital last week. I went in with completely unrelated symptoms, but was diagnosed once there with walking pneumonia. At the very least, this is an ironic diagnosis for somebody who can't walk. At best, I believe I have an ADA lawsuit on my hands. Rolling pneumonia, fine. Boogie-woogie flu, maybe. But not walking pneumonia.

While I was in the hospital, I learned something distressing about ALS. I know you're probably thinking "What isn't distressing about ALS?" and you'd be right. I discovered how unknown ALS is even to health professionals. Of all the paramedics, firemen, nurses, and nurses' aides I met last week, NONE OF THEM had heard of ALS.

This is a problem.

Now I am hardly the exemplary ALS fundraiser. I'm always coming up with ideas like ALS Barbie or my more recent concept of the Robot Caregiver. The Robot Caregiver would allow people who suffer from ALS to still have precious alone-time while all their needs are met. The robot would be programmed to tune in to distress and would be wired for the internet so it could play amusing youtube videos for you when you are sad. I also have been instrumental in promoting the Ironman Suit for people with ALS. After all, wasn't one of Lou Gehrig's nicknames the "Iron Man"? I think it would be a lot better to have ALS if you had a robot caregiver and a suit that made you fly so you could say to people, "I ay not be able to walk like you, but I can totally fly bitches!" Here's my prototype for a Robot Caregiver:

Nevertheless, as I get more and more fatigued from ALS, I'm thinking more and more about ALS awareness.

It made me think about my son's frequent lament that the reason ALS awareness is so important is not because it's the worst disease and not because people are inherently more worthy of awareness when they have ALS, but because AIDS and cancer have 100% awareness and ALS didn't even hit 10% in a frickin' hospital.

Therefore, I have made it a goal in the months I have left on this planet to get 10,000 people that don't know about ALS to learn about it. That comes to $1 per person in terms of the money I spent on the Always Looking Sexy Calendar.

How is this possible? I'll tell you how. You guys have to get off your butts and order the calendar. You also have to send the link to all of your friends. Even if they just read your e-mail and don't buy the calendar, the way I typically read chain e-mails and break the chain, they will still know something about ALS.

ALS strikes anyone. If you look at our calendar, you'll see people as young as 23 and as old as 70. It does not discriminate by gender or race. Someone in your family could be the next person to get this horrible disease.

Not that I'm complaining, which I totally could, but in the two years I have had ALS, I've lost the ability to walk, to feed myself, to type this e-mail, to sing, to dress myself, and to wipe my own ass. And the party's barely started. My lungs are failing and by mid-afternoon, I'm hard to understand. I deal with the indignities of having someone give me a suppository so that I remain regular (a concern when you have ALS) and I deal with the humorous aspects of the same. For example, one of my caregivers--I won't say who, but it's the same one that put my hand in a cast--stuck the suppository up the wrong hole, which is quite a task, since a baby's head has past through the hole she chose. After the deed was done, she had to root around in my vagina until she found the suppository thus giving me my first lesbian experience. Dear Lesbian friends, tell me its better than that!

I know a lot of people who have suffered far worse from this disease than I have and that will not stop until there is cure. There will not be a cure unless there is money and there will not be money unless people know about ALS.

I'm charging you with the following responsibilities:
a) Buy a calendar. Or 10.
b) Send this e-mail to all of your friends immediately. Once January is done, no one will be buying calendars, so it must be done swiftly.
c) Tell people bout ALS.
d) If you are local, come by my house, pick up 0 to 20 calendars and find a local coffee shop, used bookstore, or hair salon at which you could sell the calendars on consignment. I have 200 calendars left that I want to get rid of before Christmas.
e) Display your calendar prominently.

Here are some FAQ's:
1. My family are a bunch of tight-asses. Is there something in the calendar that will offend them?
Absolutely. Here's what you do: You color in the panties of Miss January and you change Mr. July's quote from, "Yes, my cock still works." to "Yes, my glock still works." with a little deft penmanship. Glock still makes him seem like a bad-ass and it could be a euphemism for cock since they both shoot. However, your NRA-lovin' Republican grandpa won't be bummed out by glock.

2. What if I want to buy a bunch of calendars? Do I really need to spend that much money?
Oh hells no. If you buy 10 calendars, you get a discount of 25%. If you buy 100 calendars, I'll discount you by %50. Just contact me directly.

3. I went on the website and it was confusing to see where to buy them.
You need to get in your time machine and set it for 2009 where we have sale purchases that are made on the internet. It's very easy.

4. Will I get into Heaven if I buy over 10 calendars?
Yes. I will keep your cloud warm for you.

So, to recap. E-mail me if you want bulk calendars or if you will agree to find a place to sell them. Otherwise, go to

And if you're in a buying mood, you can log on to

to buy my latest CD, which is called "Songs About Love, Death, and Wings."

I'm actually still too sick to blog, but this calendar is probably my last big project and I really want to leave the world having accomplished something really cool, so tell a friend about ALS today... and they'll tell someone... and they'll tell someone... and so on and so on. (Any resemblance to 1970's shampoo commercial is purely coincidental.)