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 (http://carlamuses.blogspot.com/2009/12/maclen-muses-happy-birthday-mom.html) 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!

https://alwayslookingsexy2010.alscommunity.org/GroupSite/tabid/54/albumid/278/view/ViewAlbum/Default.aspx

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 because...you 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.

SUPER-CARLA’S-MAGIC-IS-INFECTIOUS-AND-ETERNAL
(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!

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

https://alwayslookingsexy2010.alscommunity.org/GroupSite/tabid/54/albumid/278/view/ViewAlbum/Default.aspx

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

www.cdbaby.com/artist/carlazilbersmith

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.)

Thanksgiving Thoughts

Looking at a picture of Mac from Friday night's sneak peek and noticing that he can still smile until his eyes twinkle despite everything he has been through.

Having had my Dad three blocks away these past three months.

Knowing that I'll be spending Thanksgiving with a bunch of my caregivers and family. Knowing that is what I want to be doing on Thanksgiving.

Fire dancing.

People.

The Forbes Norris ALS Clinic. Not because they are going to save my ass, because they won't, but because they are all great at their jobs and wonderful, funny and compassionate human beings.

The faculty and staff at The College of Marin who have not forgotten a colleague and continue to help.

The documentary sneak peek at The College of Marin.

Ronald cooing " I lo-ove you - I'm gonna kiiiiilll you" and then counting to 4.

I'm grateful for the students who have made me laugh for 16 years, who show up a dozen years after having a class with me to let me know they haven't forgotten me and for continuing to be in my life. For making me proud.

I'm grateful that one of my students became my caregiver and is traveling back here all the way from New York for Thanksgiving.

My friends. Always my friends. I'm grateful for them when I wake up in the morning and when I go to bed at night because they could have bailed, but instead they have chosen to take on this painful journey. Lots of people have not been able to hack it but many of my girlfriends show up every week. Thinking about ways to help me occupies time when they aren't with me. I don't even want to think about how much money they have spent on me. Its amazing to know that you can send out an email or make a phone call and whatever you need will be taken care of by the end of the day. About a month ago I sent an email to my brother and to several of my close friends saying that I was having a hard time and I didn't know if I could keep going without losing it. It was about 9 or 9:30am. The first one through the door was Edith at around 11. Kathy, Wendy and Kris showed up shortly after. Kaila came by at 12:30. While they were all there my brother called. Let me emphasize I had not asked anyone to call or come over. It's nothing short of miraculous to me to have people just show up.

My friends. I have friends I don't get to see as much because of their work schedules, young kids, etc. I'm grateful for their phone calls and their emails with youtube links and interesting forwards (well not the forwards that make you send them on to ten strong beautiful women you know and not emails of adorable kittens or puppies in the body of the email. I must admit - even if somebody had sent me a chain email saying "Please send this to 10 of your best friends or you will get ALS" I'm pretty sure I wouldn't have forwarded the email...wait a minute, maybe that's what happened.) Anyway, I'm grateful to those friends for showing up in the way that they can.

Pricks I'm not in relationships with. I'm grateful to all the pricks out there who are not currently in a relationship with me. Thank you from the bottom of my heart for not being my prick boyfriend that I should dump but I don't. I'm not grateful to all the really great guys who are not my boyfriend, unless they are somebody else's boyfriend. Awkward!

Psychos who are no longer my caregiver. Thanks for that.

I'm grateful to my new friends who have ALS. Because I hate acronyms, I won't call you my PALS , but I will pal around with you and even get a tattoo with you. Yes, I'm talking to you Gimp Girl.

Muselings.

Music.

I'm grateful that Mac calls me pretty much every day and tells me things I don't understand about politics. I'm grateful for his heavy breathing as he talks on speaker phone while riding his bike across the campus, for the loud music rattling through the cafeteria and distorting his voice and for the interruptions as he orders fettucini or greets roommates, because all of those background noises help me picture what his world looks like now. I am particularly grateful that he is away at school. It would have been great to have him around but its sweeter to know he is thriving and happy and creating a future for himself.

I'm grateful for all the friends and family from out of town who make the time to come and see me. I'm grateful for the extremely magical time with Stephanie who sat through a visit which included me being sick from a medication, exhausted from stress, having the most toxic and volatile parting with a caregiver since James Caan and Kathy Bates in Misery, a sneak peek of the movie where she had to share me with 500 other people and a subsequent day of me being barely able to lift my head from fatigue, nausea and dizziness. The weird part about the visit is that we both had a great time with each other. Not so surprising for me since it's a low bar these days, but for her to have had a good time in those circumstances gives you some idea of what kind of person she is. No, not masochistic, just really good.

I'm grateful for all the young people in my life from Mac and his friends to former students to my unique group of caregivers who run the gamut from artist to dancer to connoisseur of all things weed related to gun toting tattooed sweetie pies.

Unless this Jesus guy is everything he's cracked up to be and his supporters haven't given up praying to him on my behalf then this is my last Thanksgiving. Would you believe that this is the one I'm most grateful for? See that's the trick about gratitude. It doesn't count if you are only grateful on the good days. It's a cumulative thing and it spreads and it grows and it's a fuck of a lot better to be grateful when everything is shitty than to be thinking about how shitty it is.

Everything gets harder, every day more challenging but loving this life and the people it has brought to me paradoxically gets easier and easier. If I had a time machine I would go back to when I was a teenager and I would whisper in my own ear all the things I've learned in my almost two years with ALS and you know what... I probably wouldn't listen to me. Some things you need to learn your own self.

And it's all worth it. And it's a privilege to be here.

Message to god (If that's your name): Yo G! We cool.

More Public Humiliation For Edith

A little less than one year ago, I performed for the last time. It was November 26, the day before Thanksgiving, and I knew part way through the gig that this would be the last time I performed on a stage. This as you can imagine was the unkindest cut of all. I don’t think anything has been harder, nor will anything be harder until I’m no longer able to talk, which if you know me is something that I do really well. If there were a competitive talking event in the Olympics I would get the judges’ highest scores for quantity of words, inexhaustibility, and a perfect 10 for creativity.

And so as we got closer and closer to Thanksgiving this year I wondered with dread if I could find a place of genuine gratitude. After all, I’ve lost so many things this last year. It gets harder to harder to do simple tasks and leave it to me to be the ALS anomaly with random symptoms like vomiting. You let me down internet. You didn’t mention vomiting as an ALS symptom. Every day it gets a little harder to be cheerful and look at ALS with that hazy, sepia lens they use on TV for flashbacks of happy childhoods and Kodak commercials.

Good new though: this time of year (today to be exact) marks the anniversary of the birth of Edith Muroga Morrow. I would tell you which anniversary but she would kill me. So in the interest of not angering her, let’s just leave it at she’s very old. (That crack is for Edith’s siblings in case they read this. By throwing the first punch I’ve saved her from a much crueler blow.)

Now those of you who are faithful readers of this blog know that next to talking, the most remarkable thing about me is my award-winning collection of friends. Each one is unique. Each one is gifted. Each one has his or her own peculiar quirk or anxiety that makes them not quite perfect so I’m less envious of them than I might otherwise be. Edith is perhaps the least neurotic and quirky of my friends which is a remarkable accomplishment since she grew up with a man who covered his office windows in tin foil.

Edith has an inscrutable look that takes years to figure out. Her doppelganger Kathy has this disapproving eyebrow cock and lurching forward of the forehead with the chin tucked in which would make most men’s scrotum’s recede and which chills the very heart of this poor cripple. Edith’s disapproving look however is far more subtle. It’s more of a complexion change than anything else. In another life she must have been one of those Gary Cooper type cowboys. I imagine her on the plains facing her down her foe, who, searching her face for the “tell,” never sees her hand reach for the Colt 45. Her eyes don’t even follow the poor slob as he drops to the ground. She just blows across the business end of her pistol, twirls it three and one quarter times on her index finger and it lands perfectly in her gold and oyster brocade holster. She doesn’t blink.

But that’s really only one side of her. Inside her calm cool-as-ice demeanor beats one of the warmest hearts this side of the Pecos. Edith is at my house a minimum of once a week. I’ve called her on her cell phone from another county, and said, “I’m at this party and I’ve locked myself in the bathroom because I’m freaking out.” And she has simply said, “ I’ll be right there.” And she’s always right there. She has listened to me complain bitterly and at great lengths about all kinds of things both serious and petty and she seems to have the misfortune of being the one that’s around during at least three quarters of my completely Vesuvian explosions. She is apparently incapable of spewing molten lava herself and tends to explode more like a bottle of seltzer water that someone had in their knapsack--mildly explosive, and a little soggy but nothing that can’t be quickly cleaned up.

I’ve seen Edith deal with things that nobody should ever have to deal with. I remember Kris, Wendy and myself sitting on the floor of Kris’s empty new house. We were supposed to be putting contact paper into the cupboards and unloading boxes and instead we were sobbing in each other’s arms because Edith’s son had been diagnosed with leukemia. I’ve never seen anyone deal with something so horrible with such grace as she did then. In the midst of cleaning stents, watching her baby get spinal taps and chemo, and discovering that if that wasn’t enough, he also had something wrong with his fucking heart, Edith dealt directly and bravely with the situation. She cried when she had to but she still went out for birthday dinners, indulged in retail therapy, and treated Nick like a regular kid whenever she could. She and her husband (who is very shy so I won’t mention him by name in this blog… let’s just call him…“Guy,”) did such a great job with Nick that he doesn’t remember being sick at all. A kid who had been sick at the same time as Nick recently died. Edith was extremely upset but when she went into Nick’s room to check on him and ask him if he was okay, he answered, “About what?” They have not raised him to be the kid who had leukemia and Edith never seemed to revel in the role of the tireless martyr mom of sick kid. She has always done what needs to be done. She has always had the common sense to take a break when she needs it.

She’s like that with me. I never get the sense from my inner circle of friends that any of them are trying to rack up friendship points in some weird ALS themed video game. Edith just kind of quietly takes care of things that need to get taken care of and some that don’t. For example: I can’t drink from a normal cup anymore so I need to use a straw. The other day Edith shows up at my house with a crate of 3,000 straws. I think I’m going to put it in my will that whatever straws are left should go to build a memorial straw sculpture made by Edith herself. I think a fitting tribute to me would be a giant straw man that people could knock down in my honor. Edith would probably give it a giant straw penis because she also has a very cruel and wicked sense of humor. I love watching her eyes when she says something hilarious yet mean to me because there’s this naughty twinkle that takes about 15 years off of her… which still means she’s very, very old.

By the way, she would blame the straw man’s penis on me. Don’t let her get away with that bullshit.

So as the days get shorter and nights get colder and we creep up toward Thanksgiving, the first blessing that I’m going to write about is my friend Edith. Glamorous, good, creative, and a real smart ass. I love you Edith. Happy Birthday.

How to Piss Off the Fatally Ill

How to talk to someone with ALS: The Do’s and Don’ts

1) If someone tells you that they have ALS, do not respond by saying, “You know I’ve been getting these headaches. Do you think I have ALS?” I’m not saying never do this. You may do this if the ALS patient to whom you’re addressing is, let’s say, A FUCKING NEUROSURGEON. You may also say, “You know I’ve been getting these headaches. Do you think I have ALS?” if you’re okay with the response, “No. I don’t think you have ALS. I’m pretty sure you have an inoperable brain tumor.” This will probably not offend you because if you said, “You know I’ve been getting these headaches. Do you think I have ALS?” you no doubt have a very small brain. Which means you are a DUMBASS. Other than these 2 examples, it’s really better not to ask someone with ALS to give you this complex diagnosis that takes some neurologists years to figure out.

2) Here are the circumstances under which you can say, “I know how you feel,” “Tell me about it,” or “Girl, I’ve been there” to someone with ALS. The circumstances are: If you are an asthmatic quadriplegic with a speech impediment who has created an incendiary piece of art that has inflamed the Muslim community and caused them to put a fatwah with a price of 5,000,000 dinar on your head. Let me check, yep. That’s pretty much the only circumstance that you can say those things.
Please note: If you are an extremist Muslim, say, a Wahhabist, and take offense at this, PLEASE put a fatwah out on me. That sounds like a much more interesting way to die than ALS.

3) Do not tell someone with ALS what death and the afterlife are like, unless you went through a dark tunnel following a white light at the end of which you were met by Elvis, who told you to go back because it wasn’t your time yet and you were needed on Earth to make rock’n’roll history. If this has not happened to you, I am kind of confused as to how you could make any claims about the afterlife and, in fact, I will go so far as to say that if you make these claims to me, I will make it my personal mission to haunt you and make shitty predictions about what will happen to you during the course of any given day. When I’m wrong, I’ll say things like, “Hey, how was I supposed to know? I’ve never sky-dived.”

4) Please do not volunteer advice to someone with ALS about forgiving former boyfriends, family members, etc. I’m pretty sure that if I hang on to a grudge with you-know-who-you-are (oh no, you don’t, because you don’t read this blog). Anyway, I’m pretty sure that if I hang on to a grudge with the aforementioned you-know-who-you-are, it will not prolong my life. If it did, I would get me some more grudges and stay bitter until stem cells are perfected. Truth is, people who die of gunshot wounds do not forgive the bullet, the gun, or the asshole that shot them. And they still die.

5) Don't call me differently-abled. I used to walk and feed myself and dress myself. I'm not different now. I'm worse-abled. It kind of sucks to lose abilities. It's not just different. I know I sound demanding and bitchy, but that's me putting the "dis" in "disabled."

6) Ixnay on the Esus-Jay.



Here are a few Do’s.

1) You can say or do almost anything if you’re saying or doing it from the heart. You can even say really banal and clichéd things that you only read on greeting cards with pictures of sunsets, and if you really mean it, and if you’re saying it as much for the revelatory nature the words have in the context of crippling illness and untimely death, then you can say things like, “Make every moment count” and it will be okay. Please note: While I agree that it is important to make a lot of moments count, I don’t think it’s fair to tell someone to make every moment count, because they will fail. A lot of people with ALS are type A over-achievers (except of course for slackers. Yes, I’m talking to you, Stephen Hawking. Come on! You live 40+ years with a disease that has a life expectancy of 2 to 5 years and all you can come up with is A BRIEF History of Time? Hell, if I had that long, I could come up with A Relentless and Tediously Long History of Time. Ooooh snap! Stephen Hawking, you’ve been served!), so if you tell them to make every moment count, they’re going to feel guilty when they sit glassy-eyed in front of the TV watching episode upon episode of MI 5. How about, “Make a shit load of moments count, but leave time for TV, tanning beds and masturbation.” Just a thought.

2) You can say tasteless things. See above.

3) If you say something stupid, try to make it so colossally stupid that the person with ALS gets the indescribable joy of repeating your faux pas to everyone that will listen and, perhaps, even write a blog about what an idiot you are. A fatal illness does not cure one of being judgmental, gossipy, or prone to Schadenfreude. One of my favorite reactions, no make it two of my favorite reactions, to me telling someone I had ALS was a guy who brushed me away with a wave of his hand and said a word that can’t be spelled, though might be spell-able in Yiddish. The word is “Ach!” The context was, 1) wave of hand and brush off gesture, 2) emitting of sound, “Ach!” 3) departing bellowing the words “Stem cells!” The other guy who did this was an actual medical doctor. For more bout him, see my blog titled, “The Worst Doctor Ever.” His response was, “Go stem cells!” in a kind of Inspector Gadget, “Go Go Gadget” way. I must have told a hundred people about these two guys. It brings me great joy to see the look of horror and disbelief on people’s faces when they realize that actual carbon-based life forms would say that to other carbon-based life forms. I also love love love the lady from Shanghai who also dismissed me with a wave of her hand and said, “Dohn worry. Darri Rama say you gohna have anuda rife.” It was oddly comforting in an absurd way.

So let’s review: Don’t be a little bit stupid. Be really REALLY stupid. Don’t worry about what you’re saying because if you’re worrying about what you’re saying, you’re probably getting it wrong. Do make tasteless and inappropriate jokes if the occasion requires. Don’t ask for a diagnosis from anyone other than a licensed professional. Don’t mistake yourself for a military chaplain on the front lines or a guy in a cave on the mountaintop dispensing deep spiritual shit. If I want that, I will find an ADA accessible cave complete with ascetic monk. Empathize with extreme caution. And do your own forgiving. I’ll do mine.

I know I missed out some crucial Do’s an Don’ts. If you have ALS and you have something to add to this missive, please blog comment.

PS: To the person who was offended by my comments about Lou Gehrig’s sex appeal. I’m sorry you were offended. However, I’m pretty sure that there is not a man out there who is bummed out when he hears that somebody in the world would totally do him. As a matter of fact, any man who hates it when he finds out a person thinks he’s hot, please write a blog comment and enlighten us. I don’t think it disgraces his honor to point out that he was a hottie. In fact, I heard - probably in one of his biographies - that he was hung like an Iron Horse. At least I think I got that right.

no time to die

Every now and then I wonder what possesses me to take on impossible tasks. I do, after all, have a fatal illness, though you wouldn't know it because I am so good lookin' and I have no fucking time to die. If anyone has earned a break it's me. But the truth is my projects are what keep me going. I live for seeing the inate and ridiculous possibility in something and then making it happen. I love the moment when " what if " is transformed into " it's on! " And so it was with the Always Looking Sexy Calendar. I mean it makes utter sense. Lou Gehrig was dead sexy. If I were alive in his day, the only thing that would stop me from having sex with him would be...a bed full of young Willie Mays. (He could " say hey" to me any day.)

ALS folks are often sexy (David Niven, Shostakovich, me ). Often brilliant (Stephen Hawking, Charles Mingus, me). And
often very persuasive (Mao Tse Tung and well...me.) Unless Shostakovich was persuasive, I am claiming exclusive bragging rights on all three.

But back to the ALS calendar. Because I took on this ludicrous project, I have had the rare honor of filling my life with heroes and no, I don't use that word lightly. Jason Picetti, father of 19 month old Emma can barely speak but his voice is stronger than most through his warm intimate and upbeat writing. Likewise expectant father of twins, Scott Lew, whose prolific output of screenplays combined with a quicksilver wit puts most " full -fingered" artists to shame. Scott was describing the humility and courage of Lou Gehrig to me and I didn't want to embarrass him, but I thought " Dude, that 's totally you! " Sarah Ezekiel works tirelessly to promote ALS despite being a single mother relying on technology for all her communication.

Oh, I desperately want you to know these people. I want you to fall in love with beautiful, wickedly funny Megan Mishork and be delighted with sweet and charming Corey Reich -tennis coach and super fund-raiser. Or Dennis Myrick who implausably is still working even though he's on a ventilator. Not to mention the hot and hunky Gary Temoyan, the charming and funny Steve White and a few folks I don't know as well (yet) like Jim Cullie, Dianne Kendall, Augie Nieto and Marilyn Silva-inspiring one and all.

Now I am not trying to suggest that people with ALS are inherently more heroic than anyone else or that we suffer more or that our cause is more cause-worthy than poverty, pancreatic cancer or Derek Zoolander's School for Kids Who Don't Read Good and Want to do Other Things Good Too. I am just sharing. These people and my Forbes Norris care providers (fuck you managed care - you just made me use your euphemism) and my loved ones have taught me more about hero's journeys than Joseph Campbell ever dreamt of.

I am in awe of the bravery I am priviledged to witness in these people. I know they have the same dark days that I do. I imagine those with advanced ALS would have gotten it when I said yesterday to Kris after a day that felt like my caregiver issues were straight out of a plot of a David Fincher film, " Lungs, please fail me now! "

I can only speak for myself, but there are days I feel like I'm impatiently waiting for death to come and free my hands and feet from the railroad ties and that my increasing helplessness is an oncoming train. And then I am rescued by a project or by an elaborate practical joke or a mad scheme and suddenly I am George Peppard in the A-Team, loving it when a plan comes together.

I began the calendar project rather impulsively, justifying it as I went along, convincing myself that it was philanthropic after the fact. I got it wrong. These people feed me. The response to the project buoys me. I keep learning and learning how little I know - how little I have always known. I said when I was diagnosed that I would not become a "spokesmodel for ALS"... on the Internet in front of witnesses no less... and this year I am the fucking poster girl for the International ALS Alliance. I do not shit you. Look it up! (on a side note, I asked Dee Norris to tell the Alliance that I was dying to be a poster girl but she said no. )

I have been on this remarkable journey and though I know the end is near, it ain't over yet. There are still so many things to be wrong about,so many ways to shock and provoke both for cause-worthy and frivolous purposes. I still have time to wheel around Berkeley with a bumper sticker on my wheelchair that reads " Paraplegics are Pussies", and see if I get my ass handed to me,which is quite likely since paraplegics have mighty arms... for pussies. There is time to explore the endless sight gag potential of durable medical equipment and to get thirty more years of dirty jokes and silly stories told in the short time I have left. Finally, there is time to harass and cajole you all into buying an absurd number of calendars. The link to the calendar website is now on this page under links.

After that, I can finally pencil in some time to die on my own calendar and when I'm gone, you can tell your kids and grandkids "Do you hear that bell? They say that every time a bell rings, an angel is making out with Lou Gehrig." Please note how I softened that bit for the kids.

And PS: don't forget the sneak peak of Leave them Laughing on November 20th!

The Little Mermaid

As you can see from the picture below, I don't have much time before I have to get back into the sea so I'll make this brief: The calendar is coming. The website will be up in a day or two so you can order all of your Christmas and Hanukah presents. If you order 100 or more I'll throw in a bottle of hand lotion. Yeah, I said it.

A Call to Action

Love is not so much a feeling as a call to action. If you and your partner are healthy and prospering don't think you are off the hook. Love is still a call to action. A call to wake up every morning and really, really see the person you love because isn't that the first spark? To be really seen? Love the person in front of you, not the imaginary one you have decided is somehow superior.

If your partner is ill, love is a call to action. Love wakes parents up in the middle of the night. It caused a man I know to risk tenure because his mom was sick half way across the country in Cleveland. It invited my friends to discover the bottomless depths of their generosity and compassion. Yes. Yes. Love is not so much a feeling as an alarm bell, a runner's gun, a reminder that we are only as good as the good we do for one another.

Love is not so much a feeling as a call to action.

My brother’s wife lay in the ICU almost one year ago. He didn't know what to do. His wife was hours away and a huge snowstorm was due. If he went to see her, their children could be alone with neither parent should he get stranded in the storm. But his wife might die. How does someone choose? How do you live day after day with such stress and no end in sight? Love, true love, kicks your fucking ass!

If you knew you were going to die, who would you want to be with and how would you spend your time together? What are you waiting for? From my vantage point I can see that there is no time to delay -no time to deny the people we love of our time, our attention or our action.

My dad has moved here to help take care of me. I am often a big, stubborn and cranky project and there's no " World's Greatest Dad " T-shirt waiting after he returns from the third Target Store. He helps because that 's what parents do - without expectation and often without hope of rewards.

Love is not so much a feeling as a call to action.


We are all so blessed and we don't remember that as much as we should but right now I'm Tom Hanks in Saving Private Ryan and the healthy among you are Matt Damon and I am telling you without a trace of irony: " Earn this. "

Guest Post: Maclen Muses

This Special Guest Post Was Written By Maclen Zilber

Hello Muselings, most of you know me, but for those of you who don't, I'm Carla's son, Maclen. You can all call me Mac (Except for you...yes you, the one reading this on a 2003-era E-machine, wearing those shoes with the shiny plastic that went out of style around the time that your E-Machine broke for the second time...One reader probably just said to him/herself, "Hey, why me?" I'm just messing with you, hypothetical person...but seriously, an E-Machine?).

Carla has asked me to introduce myself to all of you, for three reasons, two with levity, and one that is more sobering.

The first reason is that, as some of you know, I am now attending UC San Diego, meaning that I am no longer helping care for her, and guest-posting in her blog allows me to save her the time of summarizing what is going on in my life. Additionally, it allows me to assure those who don't know her as well that she is very well cared for by friends and caregivers in my stead. If that weren't the case, I would have postponed my education.

The second reason, which goes hand in hand with the first, is that you'll like me. Well, most of you will (except for you, e-machine user), and the rest of you will pretend you do.

The third reason, and the more sobering one, is that, when the time comes that my mother passes away, I will make a series of conclusory posts on this blog to let you all know. None of us want to think about this, but Carla and I both feel that, when it happens, it would be better for you to be informed by somebody you are familiar with (through the blogs and the movie, if nothing else), rather than hearing through a stranger, or through hearsay. However, I don't want readers to think, "Oh my god, this must mean that she has passed on" every time I make a post on here, so I will promise to you that that final post, on that unhappy day, will be titled "Carla Anne Zilber-Smith: In Memoriam." That should save you all a few heart palpitations. Any post I make here without that title is just another run-of-the-mill guest post. (Well, that's assuming that anybody could honestly call a guest post of mine "run-of-the-mill," which would be on par with saying that Usain Bolt with a wind turbine factory on his back isn't run-of-the-mill**.)

Do we have a deal?

Good.

(What was that, E-Machine user? You're not agreeing to the deal? That's awful petty...Okay, what if I let you call me Mac? Now You agree? Good. I like unanimity...though that was a pretty tough concession to make...)

Now that we've gotten past the introductions, and now that my name will be inseparable from mortality in the minds of many of you, I'll end this post on a lighter note: My life in La Jolla

I had a jarring pair of thoughts the other day. You see, the first half of the pair of thoughts was, "wow, I am surrounded by Southern California kids." That was disgruntling enough. Then I had an even stranger thought. "I guess I am a Southern California kid now." You see, about a month and a half ago, I left the Bay Area to begin attending UC San Diego.

The physical environment I'm in is something of a dream come true. To begin with, I'm in pretty much the only city in the country with better weather than the Bay Area. It's never too hot, it's never too cold, and it has a beach so enticing that two recent presidential candidates own vacation houses here. People always warned me that when I moved away from home I'd be unable to deal with weather that wasn't the Bay Area. I hate to say that I hate to say I told you so, because it's simply not true. I love to say I told you so, and I totally did.

The intellectual environment here is also something of a dream come true. It's a little known fact, but UCSD spends more money on research than Harvard, Yale, Stanford, Cal, or MIT. It's known as traditionally just a science school, but its Political Science department, where I'm studying, is an exception to that rule (ranking ahead of MIT, UCLA, Northwestern, and Duke). As an exemplification of the high quality of the department, one of my professors this semester is Sam Popkin, the man who was jailed over the pentagon papers, was a top pollster for 6 presidential campaigns (including three winning presidential campaigns), and has been the head of polling for both CBS and The Economist.

The residential environment I'm in is something like a Patrick McGoohan acid trip come true...in a good way. As a preface, for those of you who don't know, I skipped three grades, which makes me the second youngest transfer in the graduating class of 2011. Luckily, the 1st, 3rd, and 4th youngest transfers in the class of 2011 are my roommates (in other words, we have skipped 10 grades between the four of us). It's a veritable mini-think-tank, probably thrown together by the university as some sort of social experiment. Luckily, there's still enough sophomoric humor in the apartment to make my mother proud.

I'm also fitting in well in terms of extra-curriculars. I'm currently settling in to the position of Director of Policy Initiatives in the school's student government, a position that allows me to help make a difference in a number of different areas. Currently, our work includes establishing a men's football team and a women's LaCrosse team at UCSD, founding an umbrella organization for all of the student governments in San Diego County to lobby in Sacramento on behalf of students, and setting up a speaker's series at UCSD with a number of prominent public officials and politicians.

Up next on my list is to join the improvised theater club on campus. A future guest post will discuss the profound impact that being involved in Carla's improv groups had on myself and so many others.

Thanks for tuning in! I'd like to thank all of you for the support system that you have provided for Carla over this rough period of time. You are truly wonderful people. Even the person with the E-Machine. I'm looking forward to seeing some of you at the upcoming preview of Carla's show at College of Marin on November 20th.

**Question of the day, since I'm in the business of making "run-of-the-mill" puns. Are any readers confident enough in their literary and economic knowhow to know how a "run on the mill" could lead to inflation in a specific one of Mark Twain's novels? And no, the internet won't help you with this one.

2 blog days in a row...

I was talking to my brother the other day about the anti-bucket list. It’s the list of things that you never did and you’re glad that you didn’t do them. I encourage you to write in to me with your anti-bucket list things and I discourage you from arguing with me about mine. Here are a few:

1) Tyler Perry movies. I’m sorry Tyler Perry had a bad childhood, but that doesn’t give him the right to make bad movies. He’s the Chevy Chase of black people and I can’t include Chevy Chase on my list because, sadly, I’ve endured one of his films.

2) Okay, don’t get all huffy on me, but Cirque Du Soleil. I’ve only seen youtube clips and the pretentiousness of even the clowns made me want to run over them with a tiny clown car.

3) I’m really glad I never had the “full enchilada” waxed. I think that would hurt. A lot.

4) White jeans.

5) I’m really glad that I haven’t been to the Middle East, the Midwest (does Ann Arbor count?), or most of Canada, which is uninhabitable beyond a certain point north.

6) I’m happy I will die without ever eating blowfish.

7) I have never been to a frat party, a sorority party, a scrapbooking party, or a Tupperware party.

8) I am perfectly fine with the fact that I have never tried cocaine, although I did mention to my brother that if I were a heterosexual man, I could see how it might be fun to sniff it off of a prostitute’s belly, since it has a certain iconic resonance. But I imagine even that experience would be highly disappointing.

9) I’m glad I’ve never been saved… I mean, spiritually. I’d love to be saved from ALS.

10) I have no regrets about never having discharged a firearm.

11) There are literally hundreds of men that I’m glad I never went out with and at least 20 that I’m glad that I’ve never went on a second date with.

12) I have never been to a Country Western concert although I would like to go to a Country Western Bar and I would have liked to have fucked a cowboy… Though I haven’t met very many straight ones.

13) To my knowledge, I have never worn a sweatshirt or T-shirt with an adorable puppy or kitten on them. If I can no longer speak or move and Edith puts one on me just to be mean, take it off, then shoot me.

14) I’ve never played stupid online games and posted my results on facebook.

15) I’ve never sent a text, except by proxy.

16) I’ve never used an internet acronym in a non-ironic context.

17) I’ve never told anyone I hated them, except this one guy and I really hate him. In fact, I would like to tell him I hate him again before I die… so we could put that one on the bucket list.

18) I’ve never gotten “Girls Gone Wild” level drunk. Although I was drunk enough to have a fierce battle involving rolling down a flight of pub stairs wrestling a life-size and real-looking Batman. I won.

19) I’ve never shoplifted. Or engaged in any kind of petty theft.

20) I never took a college-level math or science class. This makes me unspeakably happy.


Now don’t get me wrong, I would rather have done some of the things on this list than sit around and not trying new things. Some of the things I’m most proud of are my colossal failures and the moments where I made a complete and utter ass of myself because I had a profound sense of how much I never wanted to do that thing again. Some of the things that I have done that I shouldn’t have done or maybe shouldn’t have done are probably more valuable than the anti-bucket list and as valuable as the bucket list. A lot of them, I can’t repeat. Not because I’m ashamed, but because they involved other people who maybe don’t want to relive a time when I was a complete bitch-slag. I will admit that I have been fired, I have been involved in reckless driving activities, I have broken someone’s heart, I have said really bad things that I regret, I have had falling outs with good people, I’ve dated stupid guys because they were cute, I have committed unforgivable fashion crimes, and I’ve let my friends do the same without intervening, which is tantamount to handing them the keys when they’re drunk off their ass because you know a fashion crime doesn’t just harm the wearer.

Did any one see the movie, Sliding Doors with Gwyneth Paltrow? The premise is there are different roads in life that we can take with different possibilities along the way. If I’m not mistaken though, she ends up with the same guy at the end of the movie regardless of which path she takes. Maybe each choice we make doesn’t have the butterfly effect with the vast consequences that we think it does. Maybe if we retraced our steps, and scrutinized the forks in the road, we would find that ultimately, they led us back to the same spot… Providing, of course, that one of our choices didn’t get us killed or convicted of a crime. Maybe life is just a balancing act where we alternate between taking great care that our emotional footprint doesn’t crush someone else and throwing caution to the wind and boldly daring to make mistakes and bravely learning from them.

Having said that though, I would only want to see Cirque Du Soleil the way Seth Rogan and Paul Rudd saw it in Knocked Up – wasted on magic mushrooms on a weekend getaway to Vegas.

Switched at Death

I saw the same old man two days in a row. He wore a straw boater with a brilliant red band and matching socks and tie. His royal blue pants rode high to show off his ladies' knee socks and of course he wore red sneakers. He was tall and cartoon strip thin. I could have been old like that. Or like my 87 year old friend Beverley who is only now beginning to slow down. Or like my granny whose crinkly velvet skin and enormous pillowy breasts were just right for cuddling.

I'm wearying. The Shakespearean comedy of mistaken identities that I find myself starring in is getting old. The play is called " Switched at Death " and it is the story of a fiercely independent woman with an unusually quick brain and a zesty sense of adventure who is accidentally assigned the wrong death -slow and irritating and frustratingly helpless. Our heroine is forced to have somebody do everything for her and often with baffling results. Meanwhile a limp and passive devotee of reality TV gets to, through some massive clerical error, die riding a motorbike through a hoop of fire across a large canyon. The bike swerves off course and it's quick and dramatic, this fiery red and orange death.

Where the fuck is my motorbike and my hoop of fire???

Get your reading glasses! Bay Area, Here I Come!

A Cripple Danced at a Gay Cowboy Wedding

I got mad at California all over again this weekend. I had the privilege to attend the commitment ceremony of Bobby and David. Now, I have been in love a few times in my life but I have never known a love with a partner like these two men obviously share. So why was I at a commitment ceremony and not at a wedding? All around me were committed same sex couples (you can tell by the matching mustaches) who showed more affection, made more eye contact, and danced together more than I ever see at the weddings of my straight friends. It was one of the most romantic weddings right down to the hanging votive candles strung across the barn like a Fire Marshall’s wet dream. So here I am in a wheelchair with almost no use of either my hands or my legs, sitting at a cowboy wedding in my cowgirl outfit watching all these couples dancing, in particular one big tall strapping (AND STRAIGHT!) cowboy named Kurt who was hands down the best dancer there. When at some point I told him what a great dancer he was he said “Come on, let’s go. I’ll dance with you.” And he picked me up and god damn it we danced!

The wedding also got me thinking about love. We all know the kind of love and devotion that David and Bobby share, but we all find it in different places. I can safely say no man that I’m not biologically related to has ever been as devoted to me as these men are to one another. However, I have friends and family that show up for me in such a fiercely loving way, on a daily basis, that I know what it is to receive that deep unselfish freely offered love.

The other night Wendy, Barry, and Jenny and I went to hear Shawn Colvin and when she sang “Ricochet in Time” I cried from the first guitar phrase to the end of the song, and my tears passed around the table like a game of telephone. I was crying at the words which I receive as a triumph over pain, I was crying about the way that songs can do what poetry and instrumentals can’t – at the way they cut right to the heart of things, tell a story, lift your spirits, and stir something in you. I was crying at how sweet her voice is and how no man has ever broken my heart but not singing is the only experience I’ve had that makes me touch that pain and understand what it truly is to have your heart broken.

On Thursday four other folks with ALS came over to my house to be photographed for my sexy ALS calendar which will be available soon, so your Christmas / Hanukkah / Kwaanza shopping is already done for you. You’re welcome. Corey Reich was Tom Cruise from “Risky Business”. This is the young man who along with his family has already raised a million dollars for ALS. Megan Mishork was a radiant Sally Bowles from Cabaret. Her aunt Marilyn Silva (the family has familial ALS strike every generation) was Sharon Stone in “Basic Instinct” and Jason Picetti who writes the blog, ALS boy, which is linked to this site, was a Don Juan DeMarco type character, surrounded by beautiful women who kissed him a lot! I was Jennifer Beales from “Flash Dance”. I have to tell you that putting this together in my physical state was one of the proudest achievements of my life. It was amazing to me to see the different forms of bravery and optimism that ALS shapes in people. Some of us tirelessly raise money and never give up hope for a cure. Some of us are advocates trying to create change on a political level. Some of us write and try to share our experiences with others, some of us are devoted parents, and some of us are way too young to even think of being parents yet. Some of us will hang on as long as we can with feeding tubes and ventilators, never giving up on the belief that stem cells or some other miracle will end this and we can return to the life that we realize is so precious. Others (like me) will just let nature take its course, have as much fun as possible but don’t want our hearts broken hanging on hope that an incurable disease will become curable just in time for us. I think they’re all perfectly rational and intelligent ways to handle something so very shitty. If you had been there, and got to meet all these people face to face you would not have been depressed. You would have left the photo shoot loving your life even more than you had a few hours earlier. These people rock!

I’ve decided to give my body to science when I die. I figure I owe science something since I was so neglectful all my life. All I can tell you about biology is that Mrs. Ho (who mercifully for her, taught at a time when a hoe was merely a farming implement) had a mole with the longest hairs you have ever seen which would wrap around each other like some kind of puzzle. I would spend the entire class imagining how I could tell her that she might want to consider a trim. That’s the extent of what I remember from science, so it’s pay back time.

The only thing that sucks about giving your body to science is not having a tombstone which gives new meaning to the phrase “Kicking it Old School”. If I had a tombstone it would say one of the following:

• It’s the new alive!

• It’s not the length of the life, it’s the angle,… baby!

• If you died here, you'd be home now. (This tombstone would be shaped like a billboard.)

One of the criticisms I received in the past is that my mentioning of death or referring to it as a foregone conclusion is somehow defeatist or negative. I always reply “We’re all dying, I’m just an over-achiever.” And the truth is, we enter the world and almost immediately begin the inevitable decay. Someone who reads this blog and is perfectly healthy could die before me. I believe that acknowledging not only that we can, but we will die helps us to get out and live.

I get to live and I get to be witness to all of this. A witness to love, to courage, to generosity, and also to miracles.

And speaking of miracles, when a big strong straight man is the best dancer at a gay wedding, I believe anything is possible, maybe even an eleventh hour cure for ALS.

and p.s. to the blogger who asked where to find my new cd: it will be available on cdbaby.com\carlazilbersmith in a couple of days and for digital download on itunes, amazon, etc. by the end of the year. the new cd is called uncovered and another cd entitled songs about love, death and wings will be available on cdbaby in time for the christmas rush.

Partici-blog 3

Dear Muselings,

Someone who reads this blog will no doubt have an answer to a question that has been plaguing me and that has stymied none other than the esteemed google. Here it is: The other day, the sun was shining and I was in my backyard watching a vine that looks like --but is not -- a clematis... at least I don't think it's a clematis. It looks like a clematis with a hard-on. Anyhow, there were several monarchs making various flight patterns around the vine and in between them were what appeared to be large bumblebees, but at closer glance, I realized they were not bumblebees, but tiny replicas of the monarchs. They even flew in the same formation as the monarchs in a sort of synchronized choreography. The markings were beautiful, but less vivid than the butterfly, though prettier than a moth. Because of my propensity to anthropomorphize, I decided then and there that they were baby butterflies, but upon reflection, I realized this was most likely bullshit. Don't butterflies emerge from the chrysalis fully formed? I mean, I mostly slept through science films, or enjoyed getting my hair combed and braided by whoever won the fight to comb and braid my hair during a boring science film, but I do seem to recall seeing a beautiful adult butterfly metamorphosize all at once.

So what the hell was I looking at?

On September 11th, I got what seemed to me some extremely shitty news. It was the same week that Mac left for college and one of the final weeks of a valiant and hard-fought divorce, which went into triple overtime. I was the Golden State Warriors 'Nuff said. The following week, I went to my clinic to discuss some really really tough stuff. Before I left, I had a yoga session with Claire, who comes twice a week t stretch me. I looked out the window and four monarchs were swooping in figure 8's around a hummingbird that shone iridescent emerald green in the bright sun and I knew at that moment that it didn't matter if the universe was telling me that everything was going to be okay or if I just had decided that's what the universe was telling me and I was really as looney as Joan of Arc. What mattered is that I got sucked back into the present and away from the treacherous world of what if, if only, and why me.

It got me thinking about the little serendipitous moments that often disguise themselves as something entirely different than what they really are, which is a reminder of how delicious our ridiculous little world is. So I propose a third partici-blog. I would like you guys to write in about a moment that was so funny or so silly or so miraculous that you forgot to be upset. Here is your starter kit:

1) Years ago I was having my first facial (not the sexy kind). The woman put all kinds of soothing aromatic masks on me and told me to lay back on my warm bed and relax. As she left, she put on some soothing music... but it was the theme to Schindler's List. I laughed so hard I cracked my face mask at the thought of her wanting me to relax to a Steven Speilberg Holocaust Special.

2) A memory I have of Mac, myself, and my caregiver, playing Rockband... Mac on drums, caregiver on guitar, and me choking out Hungry Like The Wolf.

3) I was on the phone to a lady giving a reference for one of my caregivers. The lady said to me "So, Natta tells me you are a singer" and I answered "Well I used to be a singer but now I have Lou Gehrig's disease and can no longer sing which is why Natta is taking care of me" She responded by saying in a very school teacher tone "Well yes, that is a very unfortunate disease which was made popular by Marilyn Monroe who was dating Joe DiMaggio at the time. Huh?. My friend Kris who is listening in to the conversation was laughing so hard she had to leave the room. I too was laughing but I think she thought it was all part of my "popular" disease.

4) My brother showed up at my house and said "I just said something that I thought I would never say in my life. The kids were fighting in the back seat and I heard myself say 'why don't you tell the unicorn to ask the flashlight to stop doing that?"

5)I went to the same sushi place for about 10 years. The second to last year I used a cane and eventually I wheeled in in my chair and finally the lady behind the counter asked me what happened. I told her the whole story and she gruffly dismissed me with a wave of her hand and said "ach, don't worry. Dali Lama say you gonna have another life. $7.99 -you need chopsticks?"

I swear, I got hundreds of these and so so you.

So that's your assignment. Share something absurd. Something unexpectedly beautiful. Something that defies the delight you take in it.

Love America? Boycott Whole Foods

Why does the owner of Whole Foods use his money and influence to try and defeat healthcare? Is it because he's.....EVIL? Or is it because he thinks if people can afford his store then Blue Cross is a cakewalk. This video demonstrates how utterly awesome is this generation of young folks. I adore them as much as I loathe Whole Paycheck.

Operation Hey Mackey! - Whole Foods, Oakland from Jamie LeJeune on Vimeo.

Trying a Vlog for a Change --Whaddya Think?

Will Ferrell stands up for the real health care victims

Apparently, I'm Awesome

I'm in bit of a pickle here because I want to promote the documentary that's currently being done about me, but I don't want to look like I'm tooting my own horn. Unfortunately (or fortunately) a lot of the quotes below make it impossible for me to look like I'm not a bloviating narcissist, but I'm going to include them anyway because I think it's gonna be a great film and I want you all to watch it when it comes out. Here goes...

Leave Them Laughing has now been screened by test audiences in Berkeley California, Philadelphia Pennsylvania and Vancouver British Columbia. Here's what those audiences have to say.

"Compelling viewing,very moving"--Peter,65, retired
"Awesome.Why does life need people like Carla to make us realize what we should already know" Tom,50,businessman
"Carla has an amazing sense of humour." Tim,47, mechanic,
"I really  enjoyed the whole fucking thing,especially the parts where I cried" Justin,36, carpenter
"Loved the off the wall humour"Chester,55,painter
"An amazing film, one of the best I've ever seen" Sam,21,tradesman
"Awesome, the humor is outstanding given the subject matter" Tom,48,carpenter
"This movie kept me laughing and I will always remember Carla" Susanna,24, hotel supervisor
"Thanks for introducing me to Carla. Her humour in the face of adversity is what I enjoyed most." Jean,53, designer
"Carla is a brave lady to make such a heart rending film, inspiring but sad" Anonymous female, 65,retired
"Thank you for introducing me to Carla who is fucking amazing. She has had a major impact on me" Vickie,36,bartender
""The movie is a true inspiration. I now cherish everything I took for granted an hour ago." Jenny,24, waitress
"It made me laugh and cry." Melody,26,photographer
"I really loved the film. It was powerful and inspiring, funny and highly entertaining." Christina,27,lawyer
"Loved it,a really strong movie and emotional experience," Rami,21,college student
"It seemed like the film would be a difficult balancing act between the seriousness of Carla's illness and her humor but the film was a perfect blend of the two." Mark,24, film editor
"Carla is fucking brilliant" Anonymous female,24, public relations
"Bravo. I really liked that Carla talked about her ALS experiences in a positive way." Lauren,21,student
"I really enjoyed the inspirational parts that remind us to live life to the fullest." Tanya,33, filmmaker
"Very up and down emotionally, you go from sad to glad in seconds." Karl,49, contractor
"A moving movie. I really enjoyed seeing a sense of humor from a person that's dying." Alphonse.56,taxidriver
"Fucking just great" John,57,cabinet maker
"Excellent balance of sad,humor and "tear jerking" episodes" -- Len,73,retired
"Oh my, I cant believe someone can crack jokes while going through this awful disease." -- Lilo,74,retired
"Swearing is not my thing but Carla has made everything she says and does so very compelling." -- Kel,65,Consultant
"I couldn't stop crying. Carla and Maclen are so brave,funny and completey loveable." Lyn, 69,retired
"How is that a film like this changes your view of life so completely. Man, compared to Carla I didn't know anything about how to handle tragedy." -- John 67 teacher-
"This is one very special lady. How can an hour and half change my way of dealing with challenges after doing another way for 70years." -- Brian 71 retired-
"I have a new hero,her name is Carla. Her humour,passion, talent and complete courage are now part of my memory for ever." -- Lael 47 consultant