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.”

Poverty and Abundance

“Jesus looked up and saw the rich putting their gifts into the offering box, and he saw a poor widow put in two small copper coins. And he said, ‘Truly, I tell you, this poor widow has put in more than all of them. For they all contributed out of their abundance, but she out of her poverty put in all she had to live on.’” (Luke 21:1-4)

Recently, my sister, Carla, wrote a post on her blog which was titled A Call to Action. It’s a wonderful meditation on the activity of love. She writes:

“If your partner is ill, love is a call to action. Love wakes parents up in the middle of the night. It caused a man I know to risk tenure because his mom was sick half way across the country in Cleveland. It invited my friends to discover the bottomless depths of their generosity and compassion. Yes. Yes. Love is not so much a feeling as an alarm bell, a runner's gun, a reminder that we are only as good as the good we do for one another.

Love is not so much a feeling as a call to action.”

Regular readers of this blog will know that my sister has ALS. Carla faces everyday with the knowledge that her time for action in this world is limited. She cannot use her legs or her hands. She has round-the-clock caretakers who wash her and feed her and get her dressed. And yet, through all this, she remains a woman of action.

Carla is endlessly creative. She has turned her confrontation with death into a work of art. She writes a beautiful blog. She doesn’t just use a wheelchair, she transforms it. She has decorated it, and the van in which she now travels, with colorful, funny, completely irreverent, and appropriately inappropriate images of her experiences.

In recent weeks she has been putting together her latest brainchild—a pinup calendar featuring regular people with ALS in provocative poses to raise money and awareness for ALS. It’s going to be called the Always Looking Sexy Calendar, and even though she is confined to a wheelchair and tires easily, Carla has coordinated the activity of models and photographers, printers and publicists from different parts of the country to get this project completed for the holiday season. It would be a daunting project for someone with full capacity and energy. Like many creative people, she’s a little crazy, but this allows her to throw herself into such a project and make it happen.

Whenever I read the story of the widow’s gift from the Gospel of Luke quoted above, I think of my sister. Whatever she does, she gives it all she has and all she is. She lives what she writes – that love is a call to action. One of the things that she loves the most is life itself, and her creative activity is one of the ways that she cares for life.

Last winter, after my wife had come home from the hospital following emergency surgery, Carla offered to come out to help take care of our family. She was already in a wheelchair and had very limited mobility. “I can’t do much,” she said, “but I’ll do whatever I can.” She didn’t have much she could do, or much she could give, “but she out of her poverty put in all she had.” She’s crazy like that.

And isn’t that the point of the gospel story? The widow’s poverty—like my sister’s—is, in reality, abundance because it is full of love. The abundance of the rich, really poverty if it is devoid of love.

I remember when I was a little boy getting into situations which seemed to me at the time scary or panic-worthy, like having soap in my eye that stung me, or getting my pants leg caught in my bike chain that I couldn’t get out so I was unable to get back home to safety. I remember in those situations crying and calling for help. Inevitably, it was Carla who would appear out of nowhere to see if I was okay. Rarely, did she get angry at me, but with simple caring and compassion she would rescue me and bring me back home.

In stating that love is a call to action, Carla has touched on the thing that Karen Armstrong finds is the root of all the major religions, that is, compassion:

“The religions are forms of ethical alchemy, if you like. That you behave in a compassionate way and this changes you. Why? Because all the great masters of religion tell us that what keeps us from a knowledge of the divine, from — which has been called variously God, Nirvana, Brahman, the sacred — what keeps us from this ultimate reality is our own egotism, our greed, that often needs to destroy others in order to preserve its sense of self, or even just to denigrate others. What compassion does, it makes us dethrone ourselves from the center of our world and put another there. And it's this that they all teach leads us into the presence of the divine.”

Carla’s version is immediate and imperative:

“If you knew you were going to die, who would you want to be with and how would you spend your time together? What are you waiting for? From my vantage point I can see that there is no time to delay -no time to deny the people we love of our time, our attention or our action.”

Carla’s love is an active love. I have known it from the time I was a small boy. For this I am grateful. For this I am blessed.

I love you, Carla.

The Place We Cannot Breathe

Sorrow is better than laughter, for by sadness of face the heart is made glad.

The heart of the wise is in the house of mourning, but the heart of fools is in the house of mirth.

(Ecclesiastes 7: 3-4)

Today marks the first anniversary of the day that my wife discovered a lump in her left breast. Since last year’s Labor Day, I have watched Allison undergo two surgeries, eighteen rounds of chemotherapy, and thirty radiation treatments. It was only last month that the whole year-long process finally came to an end.

Because I was needed at home to take care of Allison and our two kids, it was almost impossible for me to take the time to visit my sister, Carla, who lives in California, and who was diagnosed with ALS almost two years ago. I have watched from a painful distance while my beautiful and irrepressible sister has all-too-rapidly lost more and more control over her own body.

This has been the year that I became acquainted with sorrow.

I have learned two things this past year. First, I have come to know first hand the sustaining power of faith. To watch the two women that I love most in the world suffer the way they have, and to be helpless to rescue them from what they’ve had to endure, has been unbearable. At times, I have been deeply depressed. Throughout this year I have had to find a way to keep going, despite the desire to pull the covers up over my head and disappear.

I am a psychotherapist and my job is to care for people who are in emotional pain. I would take care of people all day, come home to take care of Allison, be the primary caretaker for our kids on those days when the nausea was so bad, my wife could barely lift her head off her pillow, and try to maintain for my kids an energy and a routine to make sure that their lives stayed stable and secure. When I could, I would try to be there for my parents and my brother as they worked to come to terms with their grief over Carla’s illness.

I tell all this, not to complain or feel sorry for myself, but to give a sense of how completely overwhelming it all was, and how impossible it was to manage all this on my own meager emotional resources. What kept me going through all of this, as I said, was faith. More precisely, it was the practice of faith that I found sustaining and nourishing. Prayer, meditation, lectio divina, weekly attendance at church—these activities often left me refreshed, re-energized, and even, at times, happy. I have come to understand that faith is not so much a system of beliefs, as it is an engagement with life and its source; a relationship with God that you work on, as you would with any relationship. Through my practice of faith I have discovered a place where I am not alone, where I am enlivened, where I am restored.

The other thing that I have learned is the truth of the verse quoted above from Ecclesiastes. Sorrow, or grief, as paradoxical as it may sound, is a more certain path to happiness than is mirth.

This verse is not saying that it is wrong to be happy, or to laugh or have fun. It is saying that as a means toward a full and honest engagement with life, mirth is insufficient. Mirth as an approach to life tends to deny the struggle and the darkness that is a part of being alive. As a result, those who rely solely on mirth become more susceptible to that darkness. The reason this is so is because difficulty and sadness come into every life and mirth is simply unprepared to do that kind of emotional heavy lifting. The capacity for sorrow or grief, on the other hand, does not deny the possibility of happiness. On the contrary, grief can teach us the preciousness of life and, therefore, it creates the possibility for true joy. Here is how the poet, David Whyte, images this idea:

The Well of Grief

Those who will not slip beneath
the still surface on the well of grief

turning downward through its black water
to the place we cannot breathe

will never know the source from which we drink,
the secret water, cold and clear,

nor find in the darkness glimmering
the small round coins
thrown by those who wished for something else.


One of the things that I admire about both my wife and my sister, is that they have the courage to confront their griefs and, as a consequence, they are two of the most vital and joyful people that I know. At her last doctor’s visit, Allison was told that her status was N.E.D., that is, no evidence of disease. She is trying, however, to learn how to live in her new reality as a cancer survivor, a reality that will require her to be ever vigilant about her health for the rest of her life. Grief and mortality are realities from which she will never be completely free, even at those times when they recede so far in the background as to almost disappear.

ALS is a fatal disease from which my sister will not recover. She faces her reality with an honesty that is raw, heartbreaking, inspiring, and frequently funny, in her amazing blog, called Carlamuses, that chronicles her experiences. This is how Carla describes life with ALS:

“You aren’t either in an untenable situation that you can’t imagine anyone else being able to bear, or in a situation where your circumstances allow you to see what a miracle life is and what a blessing it is just to be alive, sucking oxygen on this gorgeous planet. They both exist for me everyday, albeit the percentage of frustration has definitely increased as the disease has progressed.”

If there were a way for me to take away the sufferings of either of these amazing women, I would do it in a second. But that is not possible. What is possible is to not hide from my sorrow and grief over them, because to do so would be to hide from them as well. By allowing my grief, I also allow love to be present. And I allow myself to be present to the two of them right here and right now. Yet, even though I believe that the capacity for sorrow gives one access to joy, it does not mitigate that sorrow. Suffering is still suffering. It does mean, however, being more completely and authentically alive. And though it may seem an obvious thing to state, I think it needs to be said that while we are living, it is so important to be alive.