Courage and Love

The way of love is not
a subtle argument

The door there
is devastation.

Birds make great sky-circles
of their freedom.
How do they learn it?

They fall, and falling
they're given wings.
~ Rumi

My sister, Carla Zilbersmith, was this year's recipient of the Mary Lou Krauseneck Award for Courage and Love presented by ALS TDI. According to ALS TDI's website:

"T

his award is presented to a member of the ALS community who has, despite all obstacles, created a foundation of hope by maintaining a passion for life. The recipient of this award inspires his/her community to fight alongside them in the battle against ALS. He/She understands the importance of keeping a positive attitude and remains committed to finding a cure. This person is a model of strength, courage, and love in his/her community."

I was given the honor of accepting the award on Carla’s behalf. The following is the acceptance speech I gave on that occasion.

2010 Mary Lou Krauseneck Courage and Love Award Acceptance Speech

First, I would like to thank ALS TDI for honoring Carla with this award. Carla passed away May 17^th of this year, two and a half years after receiving her diagnosis. And though her loss is devastating to those who knew her and loved her, the impact on the world of her life, and the humor and the honesty with which she lived her life, is very much alive. This past weekend the film, Leave Them Laughing, a documentary about Carla, was screened at the Vancouver International Film Festival. It is incredible to think that through this film, Carla’s life will continue to inspire countless other lives with just those qualities for which she is being honored here today—Courage, Love and a passion for life.

My sister Carla was a performer. An extraordinarily talented jazz singer, an outrageous and outrageously funny comedian, a writer of uncommon depth and honesty, an actor, a director, a provocateur, a songwriter, and an occasional poet. But Carla’s greatest talent was her humanity. She was a devoted mother, a wonderful sister and daughter, and a loving friend. Carla loved people, and she had the ability not only to be able to see the real essence of a person, but to express what she saw, to communicate in word and deed to you what she saw and loved about you.

When Carla was first diagnosed, she was clear that she did not want to become a poster girl for ALS. In her blog she wrote, “I will not become a tireless crusader for a cure for ALS, I will not fight until the bitter end or be anyone’s poster-middle-aged-woman – rather I will do what we were all meant to do – be with people I love doing things that make me happy, trying to make the world a little brighter when I can and giving myself a break when I can’t.”

Carla was not unaware of the irony, in fact she thought it was pretty funny, that not two years later, it was a photo of her that headed up the Calendar she had conceived as fundraiser for ALS TDI. She had become a tireless crusader and a poster girl for ALS and it happened because she did, as she said, what we were all meant to do—be with people she loved doing things that made her happy and trying to make the world a little brighter.

Carla never felt that she was capable of the kind of dedication she had encountered in people like Corey Reich and his family, Toni and Warren Schiffer, Mary Harrington and so many others. She was awed but their endless capacity for giving, even in the face of their own personal tragedies. Carla considered herself a joker and an entertainer and felt that whatever she could offer would be in the example of her spirit for living and her prodigious creativity.

It was out of this spirit that she conceived of the Always Looking Sexy Calendar. For Carla, a person’s humanity was always more important than their medical status, and she envisioned a pin up calendar with people at different stages in their progression of the disease. She wanted it to be sexy, she wanted it to be real and honest, and she wanted it to make a lot of money for ALS research. I know that she was always grateful for the enthusiasm with which ALS TDI embraced what for some was a controversial project.

And this was truly an international project, with models from at least four different countries. In a matter of months Carla had coordinated models and photographers, printers and art directors, all while sitting as one of the models herself. It was a flurry of creative and administrative activity that would have taxed a healthy, able-bodied person, and she was tireless and dedicated.

Whether battling her illness, confronting her own mortality, raising awareness for ALS and the need for a cure, or writing bravely and honestly about it all, Carla used humor. She never missed the opportunity for a joke, especially if that joke was in any way bawdy or inappropriate. And yet, she was never gratuitous. When Carla formed a Facebook group called “People with ALS for GIANT Gimpy Foam Hands”, it was not to make fun of the failing bodies of herself and those with ALS, but to bring awareness to those bodies and the souls of the people inhabiting those bodies. Her vision for the Giant Foam Hands was never realized, but I remember her telling me how beautiful she thought it would be to have an entire stadium of people holding up these giant, yet frail, bent hands. She wanted to shock people into awareness, yes, but she also wanted to remind us all of our fragility and our vulnerability, to remind us that we are all dying, whether we are ill or not. She wanted us to remember that we are all in this thing called life together and it is our job to make this world a little better and a little brighter if we can.

And I think if Carla were here to receive the Courage and Love award she would say that the real courage is displayed by all of those who live their lives despite having ALS, who get up everyday to be with the people they love and do the things they love to do as long as they can. She would say that the real love is in the all the acts of caring—both great and small—given daily by families and caregivers of those with ALS. She would say that the people who have dedicated their professional lives to helping those suffering with ALS, or who devote their time and talent to finding a cure are the ones who display courage and love on a daily basis. She would look around her and say that everywhere you look you can see acts of courage and love and there just aren’t enough awards to recognize them all.

Carla believed that despite the pain and the suffering, there were gifts and lessons to be gained from living with ALS. It was Carla’s mission in the last two years of her life to bring awareness to those gifts, the chief among them being that this life is precious and there is no time to waste in the living of it.

I’ll close by giving the last words to Carla. This is an excerpt from her blog in which she describes the special knowledge that comes from living with ALS:

“You know how life can knock the wind out of you so suddenly and you envy the innocence of the rest of the people around you who don’t realize that just like you they could die at any moment. You want people to know how hard it is, but you don’t want them to feel sorry for you or to think you’re brave or to give you the Olympic Gold Medal for Suffering. You want people to see how easy it would be for them to wake up one morning and decide to give up their self-inflicted pain and enjoy their wonderful life. How easy it is to have a great day when you can make and eat you own toast, throw on your own clothes, go out into the world and do whatever you damn well feel like.

You want people to live all the life you’re going to miss.”