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.
Monday, October 19, 2009
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Will you allow a simple note:
I love you for all you are.
You are just so unfuckingbelievably awesome there are not enough words.- Love you, Michele Dupree
Carla, Your outlook on life is incredible. You rock, woman!
Carla - it was a pleasure to see you and finally meet you in person at the Shawn Colvin gig. it TOTALLY made my day. i sure hope this happenstance recurs.
with all love, anonymous/nonanonymous
I'll kick the ass of anyone who gives you a hard time for viewing your life/death the way you please. Just point me at their behind.
I think they give your body back to your family when they are done with it, don't they? or do I have that wrong. So, you might still get an hilarious tombstone.
Thank you for inviting me to be a part of your calendar. The energy and vibe that day at your house was awe-inspiring. I even wrote about it and posted a few pictures on my blog.
Jason "ALS Boy" Picetti
To quote the master poet/musician of our time: "He not busy being born is busy dying." (Bob Dylan) You are busy being born but thankfully you are not "born again!"
You're remarkably awesome!
As always Carla...you made me laugh and cry. And I am grateful! Thank you for the reminder to get busy living.
i love you carla. i am so happy to know you and so grateful to read your words and see your beautiful redhead smile in photos and postings. you are one of the most dynamic people i have ever known. i would say god bless you, but i am sure that would really turn you off- and i am so not poetic or much use in the writing genre. all those papers of mine you corrected... and corrected...
I teach in a human anatomy lab where we are grateful daily to the donors. I wanted to confirm that not only are those bodies returned to the families for interment, but there's also a collective headstone commemorating all the donors and an annual memorial service. You would find similar practices in labs of most sorts across the continent.
So, Carla, play your cards right and you could get *two* headstones. It's such a good deal I've got a signed donor card in my wallet.
As half of Bobby and David I am sure I can speak for the both of us and tell you how honored we were to have you attend our special day. You are the most courageous person I know and I love you deeply. At the wedding there were several memorable moments, but the one I will always remember is seeing Kurt and you dancing on the dance floor. I was in tears watching this special moment unfold. You are my inspiration and a beacon of light for everyone who is privileged enough to know you and call you friend. May your days be filled with happiness and love, and may your nights be filled with action! I hear Johnny Depp needs a date...LOL
Bobby and David
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