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!