Sunday, May 31, 2009

This Friday's To-do List

Things that can't really be described:

My friends dressed in prom dresses, drinking tequila well before the sun is over the yard arm, holding tight to my torso and grunting to keep me vertical so I can stick my head and chest out of a limo skylight and shout "Woohoo!"

Watching them dance and how sexy they suddenly are, the wind blowing their dresses and blowing the years off of them until they are the ages of their sons and daughters.

Holding my Wendy as she cries and says "I'm having trouble with you not being out there with us."

Matt arranging for a Johnny Depp look-alike to come to my house and how I can't walk but I can make a Johnny Depp look-alike blush.

Sofia organizing a group of loved ones to stand in a circle and sing "What a Wonderful World."

A baby watching, wide-eyed, as beautiful young women dance, ignoring gravity while sparks of brilliant orange ignite all around them, then die.

Being put to bed with a kiss.

Thursday, May 28, 2009


I'm sitting here alone in my bed, in the dark talking into this dictation machine and trying to decide whether to be happy that I'm still able to be alone or to be scared that I'm all alone. I fell the other morning around six, banged my knees and knocked my face up a little bit . The bruises will fade but not the reality that it's not safe to be alone. After I fell, I couldn't get back up off the floor, which - more than the falling - was really the hard part.

It's a blow. It means the end of independence is coming.

But I'm lucky because I can choose how to handle these things. When I read the blog comment from the person who's written two books with their chin, I thought "Man I am a whiner! I decided to dwell on the obstacles to writing this blog, meanwhile, this person is writing books with their chin....cheerfully!!! There's always somebody that's worse off than you. And you can feel bad if you really want, but face it: there will always be somebody worse off than you."

So probably about 50 percent of the time or more now, it's just such an effort to bring a fork up to my mouth. The food falls off of it and falls on the floor and I wheel over it and squish it or it's a big mess and my pants are covered with food and either way, my arm is so tired from lifting the damned fork, and blabbity blah blah, that I've finally given in and I'm getting people to feed me. As I told Natta, this is both horrible and beautiful. It's horrible to know you're that dependent on people, that defenseless, that you find it really hard to feed yourself. But it's beautiful because every morsel that someone puts in your mouth feels like love.

I had time today with Edith and Wendy and it was so precious. And I thought: a small number of my friends have really fucked it up for everyone else. Those damned do-gooders! Basically, all of my friends do so much for me and they're all so kind and so wonderful, but I can't grade on a curve, because perceptions are bound to be skewed. There are a couple of my friends that just go so far out of their way, spend so much money on me, go so far beyond the extra mile and anticipate things that I never even realized I needed, it feels like other friends who merely display remarkable kindness, generosity and California king-sized hearts don't get lauded in this blog as much as they would/should otherwise. It's true. So I want to go on record right here and now that I'm so grateful to all of you whether you're named on this blog or not!!! A gazillion thanks!

One of my kind friends, Bryan, has taken 1000s of beautiful photos of me over the years and put hours of work into my various cds. He is working on a remarkable project to raise $5000 to rebuild a dam in a small village in Cambodia. He has only 3 weeks left before he returns to the village to oversee the work. For more info see his website, it will break your heart and inspire you to help. i personally vouch for Bryan ( we go back almost 14 years) and hope you can help him with this great work. Visit:

Sunday, May 24, 2009

sneak preview of world's saddest song

I'm almost finished work on two, yes Muselings, TWO new cds one of which I'll release this summer, the other at the end of the year. Here's a teaser - it's a song I wrote to address the need for an ALS song that was neither uplifting nor encouraging. Someone had to do it. I think Edith took the photo.

Tuesday, May 19, 2009

The Rottenest Bird

The following blog is typed by Molly on her 2nd to last day as my accomplice. She will be missed.

Now to the blog, which will be far less poetic now that I'm speaking it instead of writing it. (Thanks for the cool tool, Edith!)

It's very rare for my son to make me cry. Ok that's bullshit, he actually makes me cry all the time. But it's very rare for my son to make me cry telling me something about Dick Cheney, because Dick Cheney to me was one of the more comic-like characters in the world. Earlier today I was likening him to "The Penguin" from Batman. Doesn't he seem, with his sneer and his malevolent voice and his undisclosed locations, to be somebody like a super evil genius from a comic book? Well maybe not super evil genius but a super evil "evil guy". "Great quivering jellyfish, Mr.President!"

Anyway, Mac and I were sequestered in the back room while Lisa was interviewed by John Zaritsky, who's doing a documentary about me right now, and in order not to make any noise, Mac wrote me a note saying that Seymor Hersh has disclosed that Dick Cheney had ordered the assassinations of world leaders including Benazir Bhutto. Now this makes it even more comicbook-y, because there's never been ( well at least until Barack Obama) a leader as hot as Benazir Bhutto. Sorry Pierre Trudeau, you didn't make the cut. I could just imagine evil henchmen surrounding the beautiful Bhutto, who had the temerity to say publicly that Osama bin Laden was dead, so of course she had to go.

Here is footage of Cheney being exposed:

Now, I'm making light of this and being kind of glib, but it really did made me cry, because Muselings, we lived for 8 years under an administration that makes the TV show, 24, seem plausible and not at all over the top, except we don't have Kiefer Sutherland to butt...some ass. How is it possible that we did nothing when we knew - come on, deep down we knew - these guys were complete unchecked evil? Where was our coup? And here's what I think the problem is: we are the most comfortable nation on earth. We are the bean bag chair of the universe. I don't understand how we've come to be so entitled, but we are.

Case in point: Wendy and I were on our way to Boston and people coming off the previous Jetblue flight were apoplectic about the fact that the TVs hadn't been working. Now, I don't know about you, but I would think that since there are only 2 airlines that even have TV ( not counting Air Force 1 of course) why would you expect a TV to be working, and why would you be asking for your money back because you didn't have a TV? And why would you step in front of a woman in a wheelchair who's trying to gate check her chair and get carried onto the plane to complain about the fact that you didn't get to see "The View"? I consider it great luck that I don't get to see "The View"!

But that's just me.

Louis C.K. does this great bit which you can Youtube, (and by the way, people older than 50, Youtube is a verb, which I will conjugate for you now: I Youtube, you Youtube, we youtubed. Here it is in a sentence: Let's get baked and Youtube the footage of O.J. riding the white Bronco hella slow... ) anyway, he does this bit called "Everything is Amazing and Nobody is Happy." I strongly urge you to Youtube it because the central theme is that we have everything we need for happiness and we are still miserable about stupid shit. So it doesn't surprise me that we would not have a coup in this country during the Bush administration because we are too comfortable, we are too happy with our conspicuous consumption to give a shit about anything besides what's on TV, what stuff we're gonna buy that day, of whether our latte is nonfat or low fat or fat fat. I'm also surprised at people who order nonfat with a fucking doughnut. Are you people high?? For people a nation weaned on nonfat food, we are the fattest people in the world.

But anyway, Mac and I have been busy filming away on this documentary, and although it is the most exhausting thing I've ever done, its really really fun. The team is great; Ed, Luis, David, Montana and of course, John, the director. It's both deeply moving to revisit these - let's face it - pretty heavy moments of my past and also kind of comforting to see how far I've come in accepting semi-trailers of life-dung and to see what an amazing person Mac has turned into over this last year and a half or whatever the hell its been. I lose track of it, which is also a good sign I think.

We'll be filming more over the next couple of weeks and well see what transpires. And I only sort of mean it about trailers of life dung - my friends have helped me out so much they should claim me on their taxes, my dad pays my substantial rent every month and now my mom is buying me a van! Stay tuned in the very near future for stories of adventures of Carla tripped out on Scooby snacks driving around in the Mystery Machine!


No, seriously - does anyone have a shotgun?

Just kidding.

Saturday, May 09, 2009


Hello out there! I miss you.

Lately the world has been shrinking and expanding, shrinking and expanding at such alarming speed, I can’t seem to keep up. Change is being hurled at me like some sort of existential dodge ball game and I feel like the fat kid with coke bottle glasses who can’t move quickly enough to avoid the onslaught.

Life has me caught in its’ cross hairs.

My back has been out which made my trip to Boston a challenge. I was taking a slightly watered down version of the Heath Ledger cocktail, which didn’t ease the pain at all, but it made me not give a shit.

I played with my 4 and 2 year old niece and nephew and I’m not sure if I was having booze and drug induced hallucinations or if I really did play tag and hide and go seek with them hiding naked in the sofa, their two adorable bare asses sticking out from the cushions. Must have been the drugs.

In case I don’t write about the trip, I need to say that Wendy took me and she was on duty 24 hours a day, affording me the energy to hang with Jason, Allison and the kids. My friends are the main reason my life has been so good up until now. Without them, I shudder to imagine how much ALS would suck.

We interrupt this blog for a Berkeley story: Mayra and I were at the pool and this women says to her “The truth in me honors your service” Or I think that’s what she said, it might have been “The racist in me sees you are Mexican.” I love Berkeley.

My nephew has the sweetest disposition but he uses the language of an evil mastermind. His sister wanted his new pony toy and he kept appealing to her by saying over and over “But it’s mine all mine!”

I feel like my disability has finally eclipsed my sexiness, which utterly sucks since I’m the most cuteboy-crazy woman I know. Men now look at me with a sad, pitying face and it feels like lemon juice on a paper cut to get that look. Please don’t write encouraging comments to this paragraph about how I’m still pretty. Anything short of a raging hard-on will feel like a patronizing response.

ALS has its’ own rubber bracelet, It’s red and says “Never Give Up” which I hope is targeted to the researchers and not the patients who are perfectly justified in giving up when the time is right. Mac and I ordered our own bracelets. They just say “Give Up.” Mac says when someone asks him about it he’ll say “You know, for ALS.”

I also want to make a bracelet in honor of Iowa, Vermont, Maine, New Hampshire and all the other gay-loving states that says "Suck on this, Rick Warren." I am thrilled to think I might be alive when ALL the United States honor the civil rights of gay people.

Mac is now 17 and finishing his sophomore year of college. He'll be going to UCSD in the fall as a Junior and I will be alone for the first time in 23 years. I’m thrilled for him and terrified for me.

By the way, I finished making ALS Barbie. Stay tuned for her commercial.