Wednesday, November 11, 2009

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!

12 comments:

Natta Haotzima said...

I swear she has no time to die, she wakes up at 8:20am and go to bed around 10:30p or more, she doesn't take naps unless she has a cold. She has ALS but it doesn't look like. If she is not dress like a cowboy in a wedding in Lake Tahoe, she is looking cute in Santa Cruz, Las Vegas and every Friday a movie club hosted in her garden. The house is always full of visits, parrots and exotic friends. The phone just cant stop of green! green! green!. We live in the jungle of a real real reality show.

Santa Cachucha carlita POR FAVORRRR!!!

n.
(artistic caregiver and ALS-accomplice)

Anonymous said...

I want to fall at your tattooed feet and declare my undying devotion to you and that unrelenting spirit of yours.
I heard somewhere that this force of life, spewing forth is an impersonal quality, available to all of us.
I better find it damn quick because I don't know what I'll do without you.

Susanp

Anonymous said...

no other person has enthralled me as much as you. your everlasting spirit, will to live, love of life, et cetera, is amazing. thank you for generating me to reflect & rethink, and infuencing my life in many positive ways.

Sarah Ezekiel said...

We are sisters, separated at birth, CZ. I'm bummed that I didn't get the red hair!

My projects keep me sane. If I haven't got any, I'll invent one. I think you've excelled yourself with the calendar, mazeltov! I'm honoured to be in it. Must go put the link on my website.

Shall we have a threesome with Lou?!! ;)

Bill said...

Wow Carla! So glad my friends pointed me to your blog. Your strength and humor is a gift not only to you, but to all who read your stuff. Rock on Sister.

Bill Sedgwick
my blog: http://alschronicle.blogspot.com

Anonymous said...

Just for a laugh

Louis Black on Queers

http://www.youtube.com/watch?v=3ANrvQC4wIk

gimpgirladventures said...

My lungs are already failing, but I do feel those days when I am ready to take out the assisted breathing and get my morphine. I can't wait to see your calander. And I think you and I need a bar night to go get shitfaced. And he's no lou but I'll let you borrow Jason, for whatever needs you need fullfilled he's a great caregiver

Anonymous said...

you all amaze me with your strength. you all had no choice but u all still remain so positive and focussed. Tomorrow I will walk 20 mtrs over red hot coals bare foot to raise money for this nightmare disease. A very small step for the giant steps you all take each and every day. God Bless you all Sue Gayton x

kklichtig said...

F@$#^%ing brilliant! Thank you!

diane kendall said...

Carla!!! you make me laugh! you make me cry! WHAT AN AMAZING WOMAN YOU ARE!I would soooo love to live near you and become one of your bosom buddies!!

Anonymous said...

I admired you from the moment I cast my eyes at you across the circle at Charlie Varon's class. You have always terrified and amazed me with bravery and awareness and passion and open-mindedness.

Of course, you are dying at the last possible moment after living full-tilt, that's how you've always been. And that's why I'm going to go on admiring you forever.

I so wish I was there to help you and reap the thrill of being in your shadow.

Helene said...

Eeek. You just ruined both bells and Lou Gherig for me for forever. I'll never be able to take them apart.Grr.
But I love you anyway.
Helene