Zilbersmith battles ALS with humor
Jesse Hamlin, Chronicle Staff Writer

Tuesday, July 8, 2008

People usually don't cry when they hear "Cold Sweat," the James Brown funk classic that Carla Zilbersmith sang at Berkeley's Hillside Club in January. So the red-headed performer felt obliged to tell the crowd why her friends were in tears.
"For those of you who don't know, I was diagnosed with Lou Gehrig's disease a couple of weeks ago," Zilbersmith said. "Which sucks. Because I hate baseball."

Jaws dropped, laughter erupted. "I'd really much rather have been diagnosed with a basketball disease," continued Zilbersmith, known for her outrageous humor and moxie long before she got amyotrophic lateral sclerosis (ALS), the fatal neuromuscular disease that killed the Yankees slugger whose name became synonymous with it. "Maybe Wilt Chamberlain disease. That's the one where you have sex 20,000 times and then you die."

Zilbersmith, who refuses to play the self-pitying sick person, laughs at the memory.

"I like really inappropriate jokes," says the singer, actress, writer and comedian. She's sitting on a kitchen stool in the Albany apartment she shares with her 16-year-old son, Maclen Zilber, and where she writes the hilarious, poetic and heartbreaking blog, Carlamuses (carlamuses.blogspot.com).

She began writing it in 2006, the year before she found out why she kept falling down. She'd thought her stumbling was a metaphor for the breakup of her marriage to jazz saxophonist Michael Zilber, whose name she merged with her maiden name, figuring she was a Smith who made a Zilber. The blog has become Zilbersmith's main means of expression now that she can no longer perform her one-woman show, "Wedding Singer Blues," and her singing gigs are probably over.

Her breathing has gotten weaker, she says, and her tongue feels heavier. An excellent mimic, she can't do a Scottish accent anymore. Zilbersmith's Friday gig at Anna's Jazz Island in Berkeley, where she'll sing tunes from her new CD, "Extraordinary Renditions" - she does Joni Mitchell, James Brown and Rodgers and Hammerstein tunes with equal flair and feeling - could be her last.

"I'm hoping to hell that's not the case," says Zilbersmith, 45, who said goodbye to teaching and directing this spring after serving as artistic director of the College of Marin drama department for 14 years. She specialized in teaching movement, "which is another reason it would be kind of a joke to continue to teach," she says with typical frankness and charm. In a recent blog titled "Butterfly in a Box," Zilbersmith wrote of "this huge sadness knowing that there are only a few gigs left."

Each performance is a gift, says the singer, who has lost the use of her left hand and is preparing for the not-so-distant day when she will have to use voice-activated computer software to communicate. "I always felt like I was best friends with the audience. But now I feel like we're lovers. There's this thing between us that's so wonderful. And I just love singing so much.

"Between the gigs and the blog, I feel people are having an emotional experience, and not just a cliched thing, 'cuz there's a lot of laughing. I always tell horrible, offensive jokes," adds Zilbersmith, who recently returned from a trip to London with her friend Edith, one of a cadre of generous friends who've rallied around to help with daily tasks and accomplish some of the items on Zilbersmith's bucket list. Visiting London was one.

In addition to attending a performance at the Globe theater, Zilbersmith, who noted that she "walked like a bowling ball being thrown by Barack Obama," insisted that Edith push her wheelchair up to a group of guys drinking at a pub. She described the scene on her blog:

Carla: Excuse me, gentlemen, I have an announcement. I am from the U.S. and I'm dying and my friends have given me some tasks to fulfill while I'm here, one of which is to have a snog [passionate kiss] with a British man. Is anyone willing to help me out?

Swarthy guy: You picked the wrong pub. Most of us aren't British.

Pasty-faced guy with glasses: I'm British.

Carla: Will you snog then?

Pasty-faced guy with glasses: Sure (he proceeds to try to dislodge my fillings with his nicotine flavored tongue while Edith and Julie laugh uncontrollably).

Scruffy and equally unappealing British guy: Are you sure your friend didn't say shag?

Carla: Why, are you offering?

Scruffy and equally unappealing British guy: (somewhat nonplussed by brazen redhead with fatal illness in wheelchair): Naw, just checking, really.

In a previous posting, Zilbersmith riffed on "You Can Heal Your Life" author Louise Hay's contention that ALS is caused by fear of success. "This makes sense," Zilbersmith wrote, "since who's ever heard of a successful ALS patient?" She then listed a string of famous ones - Gehrig, Dimitri Shostakovich, Stephen Hawking, David Niven, Charles Mingus and Mao Zedong. "I knew I had a lack of success but no idea that I feared it."

But it's not all laughs at Carlamuses. Zilbersmith also talks about her pain, grief and fear. In March 13's "A Truly Depressing Blog Only for the Strong of Heart," she wrote that she "tries to write these moments poetically so we can all find some beauty in this s-bag. But I don't feel like writing about that today. Today I want to write about being scared and sad."

She goes for the one-two punch. "I've always loved to have people laugh, then cry," says Zilbersmith, who grew up in Vancouver singing all kinds of music - she was big on Joni Mitchell, Aretha Franklin and Sarah Vaughan - and acting. She studied voice at the New England Conservatory in Boston and got a masters degree in theater at New York University. (She and Zilber supported themselves playing weddings, providing the fodder for the multi-character show she would create years later.) "Once they're laughing, they're complicit. And once they're complicit, they feel it deeper when you pull the rug out from under them."

Violinist Kaila Flexer, a close chum who has helped organize benefit shows to raise money for her friend's medical care, was at the Hillside Club when Zilbersmith cracked that Lou Gehrig joke. "I was horrified and proud of her," Flexer says. "That woman has so much guts. It was Carla being Carla. That's what everyone loves about her."

Zilbersmith, who's taking lithium to slow the illness - "Well, I'm not bipolar anymore," she jokes - has written about how she'd prefer to die. Rather than slowly fading away with ALS, she'd exit like a balloon, "like I should have the air let out of me like a Looney Tunes character and just - whooosh! - spontaneously combust. Cuz that's the way I've lived."


To hear audio clips from Zilbersmith's "Extraordinary Renditions" CD, go to myspace.com/carlazilbersmith. To read her blog, visit carlamuses.blogspot.com.


Carla Zilbersmith, backed by pianist John R. Burr, bassist Jon Evans and drummer David Rokeach, sings at 8 p.m. Friday at Anna's Jazz Island, 2120 Allston Way, Berkeley. $10. (510) 841-5299, www.annasjazzisland.com.


E-mail Jesse Hamlin at jhamlin@sfchronicle.com.

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