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Upfront2: Life, and how to live it
Carla Zilbersmith is dying from ALS—but that's not the funny part…

by Jill Kramer

Carla Zilbersmith has never been shy, but ever since she found out she's dying, she's thrown all inhibition out the window. So when her friends pulled down her pants at a party recently and somebody snapped a photo of her bare butt, she didn't protest. And then, when the photographer suggested auctioning off the photo online to raise money for her medical fund, Zilbersmith laughed so hard she inhaled her falafel. She survived the choking and readily agreed. Her ass will go to the highest bidder.

Singer, actress, comedian and, for 14 years, artistic director of the College of Marin drama department, Zilbersmith has an unstoppable lust for life, even in the face of death. She was diagnosed last December with ALS (amyotrophic lateral sclerosis), or Lou Gehrig's disease, an incurable neurodegenerative condition that will gradually rob her of all muscle control. In the meantime, she aims to squeeze every possible drop of fun out of her remaining days—and spread it around.

She'll continue to perform as long as her voice holds out, although at this point, she needs help walking from her wheelchair to the stage. But if you go to one of her shows, you can leave your pity at the door. "I've got ALS," she told the crowd last month at Anna's Jazz Island in Berkeley, "which, as you can see, stands for Always Looking Sexy." A skimpy black dress revealed ample cleavage and shapely legs. She has wide-set eyes, a mischievous grin and auburn hair that falls in waves well past her shoulders. She flirts with the audience, telling off-color jokes in between her songs. Bawdiness, she finds, is the best antidote to sympathy.

Taking a cue from the Jack Nicholson-Morgan Freeman movie The Bucket List, Zilbersmith's friends have been assigning her tasks to perform before she kicks it—everything from riding a boogie board to making out with a complete stranger in London. You can imagine what she calls her list of men she'd like to bed.

Born in Vancouver, British Columbia, 45 years ago, Zilbersmith discovered her inner ham at an early age, getting audiences to eat out of her hand by the age of 11. She studied voice and piano at the New England Conservatory of Music in Boston and married a saxophone player. They lived in New York for several years, performing and recording together. She also wrote a play that ran off-Broadway and directed a drama troupe of at-risk kids. When her son, Maclen, was born, her husband landed a teaching job at a college in California and the family moved to Albany. Two years later she began teaching at College of Marin. She stopped performing while her son was growing up, but then jumped back into it in the last couple of years. She's worked with a few different sketch comedy groups, did some more recording and had a one-woman show in Los Angeles. Just as her career was heating up again, she was diagnosed with ALS.

• • • •

You had so much going for you, then suddenly you find out you have ALS. It must have been like slamming into a wall at 60 miles an hour.

Life is rarely that dramatic. It was more like slamming into a wall in slow motion. My agent had gotten me some gigs in Seattle and Tacoma. And I was in Tacoma in early October, walking in the middle of an intersection when the light changed. And all these cars are coming and I can't run. I literally can't lift my legs to run. And I just thought, oh, that's weird. So when I got back to the hotel I decided to practice running down the hallway. And I couldn't run. My legs were like lead.

I've had nightmares like that.

Yeah, yeah. Like that. So then I was on stage and I noticed my knees were shaking out of control and I don't get that kind of stage fright. And when I went to sit down in a chair to transition from one character to another, I had to put my hands out on the chair to help me to sit down. And that had never happened, either. So I knew something weird was going on. And I thought back and remembered that in May I'd had a horrible fall—just walking along the street and all of a sudden, face plant—boom, onto the concrete. Then in June I had fallen a couple of times. Then August I had fallen down a staircase. So now all these big-ass falls were starting to look like a pattern. I also noticed my left hand had changed—there were all these little sunken-in places. I had injured it in the fall I had in May and it hadn't healed. So I went back to the hand surgeon. And she's checking me out and then she says, you need to get to a neurologist right away. So I get to the neurologist the first week in November and he puts out a bunch of possible explanations for what's going on with me and one of them is ALS. Another one was brain tumor. And I told everybody who's within my circle of confidants, I can handle anything, as long as it isn't ALS.

You could have handled a brain tumor?

Yeah, if they can give you chemo, or brain surgery. That's fixable. The thing that scared me about ALS is it's not fixable. But the hardest thing for me was, one day I was heading in to class and my son was on the second floor and I'm on my way down to the first floor and he yells over the railing to me: "Oh, by the way, Carla—are you dying?" And I said, "No I'm not dying, why would you say that?" And he said, "Just the way you've been acting." And I said, "Something serious is happening, and the minute I know what it is I promise I will tell you." But it was so hard to not have any answers for him. Because the worst thing is when you don't know what's going on. Once you know, then you go, OK, now I know what I have to deal with.

It's interesting that he chose that place to ask you.

Probably because he didn't want to get into anything heavy.

Right, but how can that question not be heavy? It was like, hey, tell me quick, you dying or not?

But you know at that age, it's so much to carry. What he has to carry is so huge. But he's pretty phenomenal. One day I was telling him I was really worried about him. I wanted him to deal with it now while I'm around rather than wait until it bites him on the ass later. And he said, you don't have to worry because I've been watching you and you're my role model for how to deal with a tragedy. And what I see from you is that it's OK to be happy even while bad things are happening.

[struck breathless for a moment] What a beautiful thing for him to say!

Yeah. He wants me to see him graduate. And I said, I know you're going to graduate and I know you're going to be great. And I know you're going to make some big mistakes, too. And that's OK. You'll find a way to work through them and weave them into who you are. I'll always be proud of you no matter what. That's just part of what life is. So we have these talks to try to make each other feel OK about what's coming. Because we both know it's going to be really hard on both of us.

When did you and your husband split?

[laughs] That's the funny part.

Somehow I doubt that.

January '07. Those are my bookends: January '07, leave my marriage, December '07, get diagnosed with fatal illness. It was quite the year. I got a letter from the College of Marin's administrator's office inviting me to the retirement party: "Dear Carla, Congratulations on your retirement! We at the College of Marin are so excited about what lies in store for you." [laughs]

Huh?

There were five retirees this year. Five! And they couldn't come up with a separate letter for me? They couldn't change "congratulations" to "sorry"? And "excited" to "dreading"? Now the people on staff, on the other hand, are treasures. They came by my classroom and apologized, they've been calling me and offering help. And my colleagues rallied together for me, and my students were amazing.

I want to talk about that song you wrote, "Death Dance." It was devastating when I heard you perform it at Anna's, and again when I just read the lyrics. It sounds like you're welcoming death, that you're actually looking forward to it.

Well, that song is actually from a show I did at College of Marin, War and Peacemeal. It was my last show there, after I got sick. And it was a highly unorthodox process because I'm working with students who know that their teacher is dying and all the rules of teacher-student conduct went out the window. We just worked together like peers. And we had to tell horrible death jokes because there were times when things would happen—like I would aspirate and not be able to breathe and be choking, or I would have horrible cramps and be doubled over in pain—right in the middle of them doing a funny scene. And it would be so awkward.

What was the show about?

It's based on Peace by Aristophanes, and in that play, Peace is a statue that's buried by War. And Trygaeus goes up to the heavens to implore the gods to help him unbury Peace, but when he gets there the gods are on vacation and he has to do it all himself. It's sort of a Hero's journey. We changed Trygaeus into Tracy, a young woman, and the gods she meets are Jesus, Buddha, Hanuman [the Hindu monkey-god] and Mohammed, and Mohammed's in a paper bag because he can't be depicted. And Jesus is reading The Secret [a New Age motivational book], and when they give him a hard time about it he says, "Hey, if it's good enough for Oprah, it's good enough for me." I just decided to do a piece that I would worry about getting fired for if I wasn't dying. So we had stuff like Osama bin Laden in an "I Love New York" T-shirt, and he'd go, "What? Too soon?" So it was kind of scandalous. And we changed the ending because I didn't want Peace to be found. My thought was, Peace is right in front of us all the time and it's our failing that we don't see her. So she's constantly like, "I'm in the room, I can hear you, hello?" And through the whole thing, no one pays attention to her.

Where does the song fit in?

Well, we see in flashbacks that Tracy's mother was deployed in the Iraq war. [There's a scene where] she dances with this sexy guy who is Death, and "Death Dance" was the song that was played. There is a seductive quality to this quieter world that I'm seeing now, a more reflective world. So I just took that seductive quality and amped it up a little, to make it as sexy as the dance these kids are doing. I just imagined how I've felt about lovers in my own life, rather than death.

There was another song you performed at Anna's that you had also written, "What Is Love." Tell me about that one.

That was just me pondering the notion of love. We always think of true love as having longevity. So if you don't have any longevity, is it still love? Because in the last year I've found love in all these unexpected places, but I don't feel like it would be fair to anybody to embark on any kind of serious romantic relationship when I'm going to die. How much would that suck?

Do you mind saying how you feel about riding this disease out to the end? Have you given any thought to assisted suicide?

I've actually written a blog about it. I'm an action-oriented person and the idea of just slowly fading away is really challenging for me. However, I'm leaving my options open. I may find out that the inner world is so seductive and so powerful that I can tolerate being here without being able to communicate. In which case, I will ride it out to the end. But from where I stand now, when I cannot talk or type, I don't want to be here. Because communicating has been my whole life. It's who I am. But who knows? I've surprised myself at how I've been able to clear each one of these hurdles. I said at one point that I didn't think I could live once I wasn't able to sing the way I like. Well, I sing way worse now! And I'm not even sure I'll make it to the gig on [September] the 26th [at Anna's Jazz Island in Berkeley]. And I know I'll live. Your perspective changes. I know this sounds crazy—because I have a fatal illness that takes away all my functioning abilities bit by bit—but everything else in my life is going great! [laughs] So most of the time I feel like life is just this joyful, wonderful, happy thing.

Say some more about that.

Sure. A dear, dear friend of mine is getting married next week in a semi-traditional Jewish wedding and so I organized a bachelorette party for her. And I found some nice young men from College of Marin to do a dance and at the end, drop their pants—and we had written "Mazel Tov" across their asses. [laughs] So one of the guys—who happens to be gay—and the girl who was writing on their asses grabbed me and pinned me down on the dining room table, pulled my pants down and wrote "I love you Lisa" on my ass! Now, normally, I just don't do things like that, I would have said in my most teacherly voice, [sternly] That's enough! Let me go! And they would have. But I just thought, what the hell? And another friend, Edith, snapped a photo of my ass to show me what they had written. And so, later on, the guys do their dance for Lisa and drop their pants and I drop my pants and we're all chuckling about it. And I wrote a blog about it and I got a comment from Edith saying, "for a $100,000 donation to Carla's medical fund, I'll sell you the picture of her ass." I was home alone eating a falafel while I was reading this and I choked on the falafel—I almost died because I was laughing so hard! So I called my friend who runs the Web site and told her what happened and she said, well we don't have any fundraisers coming up right now, so let's make it a silent auction! We'll start the bidding at $1,000 and auction off the picture of your ass. So we are! Life is filled with little things like that now. At any other time in my life I would have been mortified if someone took a photo of my ass. Now, here I am, selling it to the highest bidder!

I've read on your blog that your friends have been assigning you outrageous tasks to do—like making out with a stranger on your trip to London. What else have they come up with?

Well, I'm going to Paris and Amsterdam, hopefully in September. One of my students speaks fluent French and he wants to give me something totally ridiculous to say, while pretending to look at a French-English dictionary. And I got a challenge from another friend of mine: I was crying about the fact that my doctors don't want me to be alone, and I was telling her, I can't stand that—I need to have writing time, and I really want to have a love life. I want to be able to invite a man back here and not have somebody else around. So she said next time one of my doctors starts that, I have to ask him to stop "cock-blocking" me. [laughs] Which I'll probably do because they're pretty funny doctors. But they're not going to let you print that.

I bet they will. This is the Pacific Sun!

Oh, good! Part of the fun for me is that, the more outrageous the jokes are, the more it shocks people into being allowed to laugh and to still enjoy life in my presence. It's a way of reminding everybody that we're allowed to have fun in spite of the bad things that are happening. If they were just PG jokes, maybe that wouldn't come across as much. There was a benefit for me at Yoshi's and I think a lot of the people that came thought they were going to see one of those "oh, this is so sad" benefits. And I needed to disabuse them of that notion. So I told this joke about Barry Zito, the Giants pitcher. Right before he got demoted to relief pitcher, he had donated a meet-and-greet with him, as a silent auction item. And he's a really cute guy. So I told my usual joke: I recently got diagnosed with Lou Gehrig's disease, which sucks. [beat] Because I hate baseball. And people chuckled. But then I said, if it had to be a baseball disease, why couldn't it be Barry Zito disease? I see that one as a skin cancer, and it would be so nice to be able to say, "Oh, God, I've got Barry Zito all over me. And when that thing metastasizes, let me just tell you there are worse things to have inside you than Barry Zito." And people were just gasping for breath. Along that line, I'm making a list of guys to do before I die. I'm calling it my Fuckit List.

For more on Carla Zilbersmith, go to www.zilbersmith.com . Through August 31, you can place a bid for the photo of Zilbersmith's ass at quiltmamas.com .