Saturday, October 31, 2009

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.

Friday, October 30, 2009

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???

Monday, October 19, 2009

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\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 12, 2009

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.