EXPIRED: 05/17/10 – Carla Zilbersmith, 47, died from amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig’s disease) less than two weeks after “Leave Them Laughing,” a documentary about her struggle with the disease, had its world premiere at the Hot Docs international documentary festival in Toronto. The film, by Academy Award-winning director John Zaritsky, won the Special Jury Prize for Canadian documentary.
Deep in her soul, Zilbersmith found humor in everything, and she did her best not to let ALS, a progressive neurodegenerative disease, ruin a good time.
“For those of you who don’t know, I was diagnosed with Lou Gehrig’s disease a couple of weeks ago…. I hate baseball,” she told an audience in 2008. “I’d really much rather have been diagnosed with a basketball disease. Maybe Wilt Chamberlain disease. That’s the one where you have sex 20,000 times and then you die.”
She started to notice missteps and took a few falls while working as artistic director of the drama department at the College of Marin in California, a post she held for 14 years. Shortly after her diagnosis, Zilbersmith retired to focus on live performances and blogging thru her treatment of the disease. Zilbersmith also put out 3 CD’s in this period: “Extraordinary Renditions,” “Uncovered” and “Songs about Love, Death & Wings.” The final album features a love song to Death with the lyric “Death, your eyes, they penetrate me / Death, your love, it fills me up / and I cant think, just wanna drink from your cup.”
Characteristically, Zilbersmith insisted upon writing her own obituary, so she penned one before she passed on. Here it is:
Carla Zilbersmith, born December 15, 1962, died today, May 17th, 2010. Carla Zilbersmith died in her home this afternoon of Lou Gehrig’s disease, also known as ALS. Carla Zilbersmith was mother to Maclen Zilber, her only son…that she knows of. She was also daughter to Jack and Velma, sister to Jason and Stephen. Friend to an amazing group of caring, creative and competent friends, and lover to several very lucky and largely undeserving men. Although ALS is a fatal and incurable illness, Carla never gave up hope that one day her death would be surrounded by a cloud of controversy and speculation. Her final words, spoken through a clenched jaw were “oil can.” The memorial is tentatively planned for the afternoon of, Saturday, June 5th. Details will be emailed as soon as they are determined. It is guaranteed to be the funniest funeral that you have ever attended or your flowers back. Costumes encouraged but optional.