My friends and family met at a beach in Alameda to mark the anniversary of my ALS diagnosis, My friend Linda ended up at the wrong beach but what she wrote of her time describes the scene better than I ever could. She wrote:
The afterglow of the sunset was astounding,…The pampas grass became my shield from the wind as it swayed gently in the breeze while I took in the quickly changing dance of color before my eyes. Tide pools left behind by the receding bay reflected iridescent swirls of pink and orange. Flaming red rimmed the edges of the mountains in the distance until monotones drowned out all color. In a more brutal reflection, the monotones strangle all color from existence, but we know life goes on under the surface, and life replaces death with limited exponential frequency...
The only addition I would make to Linda’s description was how magical all my loved ones looked skipping rocks in silhouette against the sunset, their figures like shadow puppets against a pink and gold scrim. I am usually the type to be right in there – part of the action – but tonight I got to watch. It was sweet.
My family members and I spoke but for me the most gratifying speech was Maclen’s which I’m somewhat reluctant to print since it’s so incredible I may seem like I’m bragging but is so well-written and amazing I must kvell. A mother’s prerogative.
I close with his words which is ultimately how this blog will end when I’m no longer able to write it in any fashion.
The theory of relativity says that if you flew a spaceship around the earth fast enough for long enough, everybody on earth would have lived fifty years of their lives in the time it took you to live a few years. How can one possibly sum up the life of a person who crammed eighty years of joy and eighty years of pain into 46 years? Carla Ann Zilbersmith, who I am privileged to call my mom, yes, I said the word, was not a singer, nor was she an actor, nor a director, nor a writer, nor a comic, nor an improvisor, nor a professor, nor is she a lady on death's door. She is an entertainer. She is a Bard. She is a professional human being.
Can you explain Wedding Singer Blues in a sentence? How about War and Peacemeal, can you find a genre for that? The works are like the woman, Sui Generis, and compelling to the last. People wonder how she is able to be such a faunt of creativity, and the answer is that every day for her is a performance. Not in the sense that she hides anything from anybody, so much as that we all wear masks when we associate with people, and she feels that, as long as we're all giving a performance, it might as well be fun as hell. Her artistic works are so full of contrasting humor, poignance, and philosophy because that is what her life is full of. Conversations with her have made junkies clean up their acts and have made straight-laced suburbanites loosen their tie.
But the way she has made the biggest impact in the lives of so many is that she is a mentor and a friend to so, so many. This is because she is rapport incarnate, and knows what people want to hear. It is because she cares about others more than herself, often to the point of folly. It is because she allows people to act in a way that they don't feel comfortable acting around anybody else. For somebody who lives life like a play, she sure knows how to make a person break character and talk about what's really on their mind. When Carla Zilbersmith walks into a room, a bus, a party, or any other area in which there are numerous people, she will make friends, learn stories, and make people think. Growing up around her was like growing up around a celebrity, not only because she has more friends than anybody I have ever encountered, but because she had a way about her that made people who didn't know her feel like they did. Whether on stage or in her life, Carla's aim was to please. Not because of the adulation which she received for all of her endeavors, though there was a significant amount of that, and not for the massive amounts of love that she generated, though there was a lot of that too, but because she likes making people happy.
Why would a woman like this get a disease like this? Random fucking chance. But this is not a tragedy. Tragic, is what you call somebody who lives to 60...70...80...90 and never for a DAY lives the way that Carla lives nearly every day of her life. Tragic, is those of you who let this event stop YOU from living the way Carla lives every day of her life. Tragic, is the fact that, the less Carla Zilbersmiths there are in the world, the less people are going to be called on their shit, the less people are going to be changed, and the less people are going to learn to really live their life. The odds are that Carla isn't the only one here who isn't going to reach fifty. Sound depressing? Well, it shouldn't be. We need to start playing by our own rules, the way my mom has for 46 hilarious and tearful years, because we shouldn't need a crisis like this to trigger us to live our lives, nor should we need a human being such as Carla Zilbersmith to trigger us to live our lives. So let's keep living it, let's keep living it, really living it. The help that Carla has received from her legions of friends has done nothing short of restoring my faith in the human condition, but do you want to know what you can do that will help Carla the most? Use humor to take arms against the slings and arrows of outrageous fortune, use love to combat uncertainty, find happiness wherever you can, and, most importantly, live your life until you can live no more. My mom does.