My friend and colleague Carla Zilbersmith is no longer eating, has written her last brilliant blog by choice and is in the final stages of the inevitable from this horrid disease ALS aka Lou Gehrig's Disease. She was diagnosed with it about 2 years ago and like clockwork, it has ticked away according to its own insidious plan. I don't quite understand why something this unfair is happening to one of the funniest and wittiest humans on the planet but it is. The last thing I feel I have the right to do is question life's randomness when Carla doesn't seem to be doing so. She is now surrounded I am sure by loving caretakers, adoring parents and a son who I first saw nursing a few weeks after she had given birth. It was in fact the first time I had met Carla herself. I remembered thinking when I first saw her - in those rare flashes of insight one sometimes gets - that this woman was both strong and very fragile. Maybe it was the red hair and pale skin. I knew then as I know now that her particular gene pool was unique and like a shooting star, burning quickly. Because of her rarity, I became fast friends, prone as I am to love the beautiful and one of a kind.
Carla and I were on and off again friends. Sometimes our creative energies blended perfectly and sometimes clashed. It didn't matter. I recall telling her I thought we would be friends til our dying days. I had no idea how quickly and how devastatingly that time would come. And now it is here. Dying days.
I have an elderly 89 year old mother who is also dying but she has had a decent run, albeit not a particularly happy or easy one. She, like Carla, is now housebound, rarely venturing outside the sanctity of her home. Why would she when the world can be so incredibly unforgiving to the disabled, the elderly, the ill?
I also have a 13 year old dog companion who was diagnosed 2.5 years ago with congestive heart failure and given hours to live. Some people would think I was crazy the way I fought to find him the best cardiologist, paid stiff prices to get him on medication and nursed him back to the living. Of course, I have no children so it makes a lot of sense in light of that. Luis is also dying now. He can not climb, run or play the way he once did and it is just a matter of time before his little brave spirit says bye bye, reluctantly I am sure.
Like Carla, Luis loves life. And like my mom, crippled with arthritic pain, he hangs on to it for...dear life.
Dear life. I don't think we recognize, most of us, til it is too late just how dear it is regardless of what befalls us. And that is why we cling to it, beyond all hope until the pain becomes so overwhelming that we decide, it is better to go gently into that good and long night. I think Carla made that choice recently. She decided that enough is enough. I hope I also have the wisdom to know when to let go, when to know that the universe is calling me home.
On Wednesday night at 7 PM at my college I am showing the documentary that will make Carla's journey and her battle with ALS much more known in the wide world. Perhaps the film will speed up the cure for an ugly disease that claimed my uncle Carmen's life as well. ALS grabs people, the young particularly, by the throat and wreaks its havoc on the muscles until no breath, no swallowing, no control is left. Carla recognizes the importance and futility of having control and that is why she has chosen to let go of life by her own choosing. She knows how to use humor fearlessly in order to push away the demons. It is something we can all learn from.
I have tried to learn from watching Carla's battle, her good nature and her integrity. I think because of her I am a better human being. And I don't say this lightly. I had significant flaws behind the mask of toughness I wore. Significant. Now I feel that it's okay to have flaws, to be vulnerable and in fact it is actually a very good thing to be human. If my life were endless and impenetrable, I would be a wall. And nothing could ever make it inside and behind the barrier. Because of Carla, and the harsh treatment of life in general over the last few years, I can grab at life like the hungry human I really am. I can go for it for however much time I have left.
And that's the real lesson here. Carla knows how much time she has. I think most of us are in a long state of denial about death and so we miss out on much in life we really want. We don't have the discipline, the passion and the awareness that says clearly, THIS IS IT, folks. It's not a dress rehearsal and there's nothing else like this ever again. Imagine the enormity of that.
So thank you beautiful and unique Carla for the gift your blog has been to a lot of us. Thanks for the shining example of the way to handle an incurable devastating illness. I hope I die from old age in my sleep. Who doesn't hope that? But if something hits me hard, some horrible thing waiting down the pike, I and many others have the memory of what it looks like to live and die in a state of grace.
I only hope I can come close to what Carla has provided: a role model of the Divine in the every day. Carla the butterfly, the Gerber daisy, the clown, the helium balloon....I will miss you, my fine fine friend. And like hundreds of others, I will always love you.
Encore. Bravo. Standing ovation.
Read her blog folks....