Sunday, June 14, 2009

How Do You Spell Love?

Allison, my sister-in-love, relayed the following story to me:

I was making dinner last night. Atticus and Jason were doing an alphabet puzzle in the yellow room.

Atticus: How do you spell "ear"?I
Jason: e-a-r
Atticus: How do you spell "eye"?
Jason: e-y-e.
Atticus: How do you spell "nose"?
Jason: n-o-s-e
Atticus, climbing up Jason and putting his arms around his neck, nuzzling into him: How do you spell "love"?

I'm sure Jason told him how to spell "love," but I was too busy being choked up to hear it.

Back here in Berkeley, Bella reached over and slipped her tiny hand into mine and patted me on the arm with her spare hand and smiled. A warm feeling gushed through my body. She and Sofia and Matt and I had been watching the demo reel of the documentary being done about me. They drive across the bridge to help and to visit every couple of weeks or so. Matt cooked his delectable cow-free stroganoff and Sofia fed me and helped out with bathroom duty. To watch the demo, Bella had parked my spare wheelchair (the Yugo) next to my big one (the Benz). There we sat, side by side. She is only six – her feet dangle high above the chair’s footplates -yet the depth of her compassion blows my mind. To our right, Sofia started crying about something in the demo and Bella, without glancing over, reached out and offered her mom the other little hand and the three of us just sat there like that, hand in hand in hand.

Earlier that afternoon, Bella read me a story (The Paper Bag Princess - one of my favorites) and she inflected her voice like your favorite elementary school teacher did and gave the titular character, Elizabeth, an English accent. And it was not bad either. I’m still struck by this six-year old girl reading the grownup a story, just as I was struck by my niece and nephew pushing me in my wheel chair. It brings to mind a poem that my friend Alison wrote once called: “Consider the Generosity of a One-year Old.”

In response to an email yesterday asking me to grade my mood and health between one and ten, I had told Kaila, that I was a .5, so this morning I got a call from her daughter, ten-year old Lucy, wanting to know if I had upgraded to a one or higher yet.

Children’s enormous hearts. What can I even say?

Last week was one of those weeks where I wonder if I’m really up for this. If I really have the strength to keep getting up every day and going on and then suddenly, I’m with these kids, playing bumper cars in the wheel chairs, watching a stupid movie, or – amazingly - being shown an open heart - a level of compassion and love that adults like me are often afraid of sharing.

And I think: yeah, I can keep going.

Lee, my respiratory therapist arranged for me to borrow a coughing machine. It’s called the “Cough Assist” and it shoots air down your lungs on the inhale and then sucks everything out of you on the exhale. Most of you Muselings no doubt find it easy to cough, so it’s hard to describe to you what a lifesaver this machine is. Imagine. Someone thought of this machine and invented it and patented it and because of it, I can sorta, kinda talk coherently and breathe properly right now.

And I’m not scared I’ll drown in snot anymore.

I’m grateful to the inventor, but more so to Lee, who along with the other angels at the Forbes Norris Clinic, are another reason why I think yeah, I can keep going.

It’s beauty that keeps me going, beauty like my pretend daughter and caregiver telling me about the difficulties she has with her Dad who has really not been there for her. Her mom died when she was young and in many ways, she’s had to raise herself. And she said very cheerfully to me “But, you know, I’ll end up forgiving him, and I’ll take care of him when he gets old.” And again my heart gushed with love, and then she said ‘But, I’ll probably make him sit in his own poop a little longer than I have to”.

Compassion: it comes in a myriad of forms.

When I was a kid, my brothers and I used to hold our breath when we passed a graveyard. I’m guessing that the origin of this has something to do with The Plague or something, but by the time it reached us in the late sixties and early seventies, it was just the thing we did. I remember as we drove along side the large expanse of green grass and grey tombstones, I would gradually feel like my lungs were going to burst and my eyes were going to pop out and I could barely hold back the giant swelling in my chest. I would watch my face turning colors in the rearview mirror ( Seatbelts? We don’t need no stinking seatbelts!) Finally, I would gasp and the breath would come rushing in like the Mounties to save the day.

It’s different with ALS + cold, because you have absolutely no control over the fact that you can’t breathe. There’s this combined sense of the commonplace because it’s happened so much and the urge to panic because, after all, it’s our nature to breath. And then finally, when the blockage is dislodged, that giant rush of air doesn’t come in like it did as a kid. Instead a raspy little wheeze of breath gasps it’s way in and the sensation feels like drowning might. And then comes the coughing, the gagging and more wheezing. On rare occasions, vomiting. Then later, the sore stomach muscles.

The last time I had a cold, I said that there wouldn’t be a second cold because I’d jump off a bridge first. Well, there was a second cold, but I’m not physically capable of jumping off a bridge and I know enough not to bother asking any of my superfriends to drive me to the bridge and heave me over the railing. So I keep on and I plug away. I put one foot in front of the other, knowing that in a week or so, the veil will lift and I will feel good ( apart from the slow, debilitating fatal illness that is) and I will remember and celebrate all the little joys again.

And I’ll enjoy myself again.

And I’ll breath.

And I’ll keep living my life.

It’s so damned hard to blog but I need to keep carving “Carla was here” all over the internets. I do it for me but don’t worry,- I won’t leave this site without a proper goodbye and after that, I’ve asked Mac to keep you all posted.

I had a dream the other night. It was ‘The Math Dream’ – you know, the generic dream where you’ve been enrolled in a math class all semester but you’ve never actually attended and now you need to take the final exam? I have it periodically. But this time I went to the teacher and I said ‘Please, you have to give me a break, I have ALS, and it took me seven months to get a wheelchair, and I’m in the middle of this nightmare divorce and you have no idea the stress I’m under.’ The teacher looked at me and said ‘Well if you have ALS what are you worried about, you’re not going to finish college anyway.’

And I wonder sometimes: why do I have to take this ALS test? There’s got to be a reason. But there is no reason, it’s just what it is. It’s a random thing – like a music and theater major having the Math Dream 20 years after getting a Master’s Degree. ALS just happened to happen to me. There’s no making sense of it, there’s no finding some powerful purpose in it. I can’t understand it any more than I can understand why a six-year old knows the exact right moment to slip her cool little hand into the hand of a crazy middle-aged dying chick in a wheelchair.

There’re so many ways to spell love, Atticus, and if that’s all that I learn from this experience, maybe that’s enough.


Anonymous said...

A great big thank you. I was miserably attacked by a sister today, undeservingly so, years of anger and hate surfacing to overwhelm and crush me. Then I read this wondrous post and it lifted me back to the sacred place of compassion, humor and an open heart. Whenever I feel I want to close up, I read your words and I stay open. That is the importance of this blog. And rest assured it is important, no is vital really that you keep blogging as long as you can and want to. Because your words have power to heal. And they do and did. A million thanks.

Anonymous said...

Why do I feel like I know you? Maybe because your writing is so clear, so personal, so honest. You should be writing a book about something...anything. You have the gift of reaching out and drawing people in with your words, stories and insights. This blog is your stage and is important. It takes your readers to the edge of life, resonates in all who read it, be sure of it. And even though you are dealing with a coughing machine, your voice is still a strong one, bel canto, belting words that tell an amazing story of a life filled with love.

Anonymous said...

I can not wait for this blog to become a book. It's gonna be a best seller only because I'm gonna buy it... a lot of times... with my mind

Anonymous said...

You are truly an artist! You craft such wonderful sculptures of words. I really do mean WONDER and FULL.

The second thought I had reading your current sculpture was I and others LOVE you with the purity that those children love you. We would lovingly hold your hand or push your chair or enjoy bumper wheelchairs!

I do have a question for you. I was going to ask about appreciating the comments left for you but decided to ask WHAT do you think about the comments in general. Do you feel the love and support from we strangers?

Keep on being an artist. I believe that even when you are with family and friends that your "being" is an act of art.

I love you dear one of many!

You touch us whether we have met or not, whether we are near or far. You will ALWAYS be beautiful especially to those who you have touched in time and space.

Thank You...

Charles Cowling said...

Yes, Carla, there are lots of ways to spell love, and this is one of them, together with the messages and thoughts of all your other readers.

You do: you touch us very deeply.

Anonymous said...

I am crying and crying after reading that.

I am so (selfishly) envious that I am not there holding your hand and helping you find joy in the dark.

I used to think I knew what to say, but I think my powers to imagine how another person would feel are starting to wain in this situation.

How can I ever understand your suffering? How can I know the knife edge of pain and gratitude on which you skate? How can I predict the pendulum from quiet rage through lonely desperation to joy? How can I time my intrusions?

I can't.

And so, I worry I won't be able to look inside and say, "what would I want if I were in this situation." What will be my guide?

I am standing at the beach watching you sail into uncharted territories and I already miss you, and I already know that only those on your ship will know what exotic creatures you see and what trials your ship will endure. You guys will look at one another and say, "did you see that wave?"

But, please, departing sailor, know that I am on the beach clutching the physical remnants I have of you and I am continually engaged in a chant, "Please, deliver her. Please, deliver her. Please, deliver her."

Even if you can't hear me. Even if it takes you years to reach your destination. Even if communication with the long-losts back at shore becomes impossible or unwelcome. I will still be chanting, "Please, deliver my friend."

I love you.

Kim Porter

Anonymous said...


Thank you for sharing your heart with the rest of us.

Carla attracts the best humanity has to offer. Anyone reading this is one of them.


Anonymous said...


Anonymous said...

Love is Carla fighting the good fight.

"It takes guts and integrity of motive to fight the good fight. It takes a passionate interest in life itself. It’s easy to stand on the sidelines, shaking your head and commenting on how tragic things are. But if you really care, you are going to be in the ring, trying to make the world a better place. And only from that position will your words and your thoughts and your insights have weight. When you live an engaged life, your sense of self gains depth and power and authority, and your philosophy is no longer abstract. You become a person who can really make a difference, because you are actively participating, you are digging deep, and you are pushing up against the edge of your own potential."

Andrew Cohen

Anonymous said...

In honor of the generous gifts that Carla Zilbersmith has bestowed on American students throughout her stellar teaching career, there is now a Carla Zilbersmith Performing Arts Scholarship that will be awarded every year at Los Medanos College in Pittsburg, California in the permanantly established Theatre Arts Dept. This scholarship is to remind students what it takes to be a pro, to be a great teacher and motivator of others and how our individual work goes on forever like ripples in a pond. Congratulations Carla!

Joanna Perry-Folino
and everyone else at LMC who respects and loves you!

Anonymous said...

Joanna Perry-Folino...absolutely wonderful and the right thing for someone some organization to do! Thanks from the hearts of all the ZilbersmithMITES.

Anonymous said...

Joanna other things. Is there a webpage about this fund and how to donate?

Anonymous said...

There are 2 ways to honor Carla monetarily that I know of. One is through a donation to the College of Marin where Carla was Chair of the Drama Dept for many years. Her Foundation is the Carla Zilbersmith Fund, C/O College of Marin Foundation, P.O. Box 446, Kentfield, CA 94914. Money donated to that goes directly to Carla to help with her health care.

To contribute to the scholarship for a worthy student given in her name, you may send a check to
Claudia Acevedo, Scholarship Director, Los Medanos College, 2700 E. Leland Road, Pittsburg, CA 94565 making sure you say that the money is for the Carla Zilbersmith Scholarship for the Performing Arts and writing it in the payable line in your check.

Either donation is deeply appreciated.

Anonymous said...

This post is beautiful. You are a beautiful soul and writer.

Anonymous said...

Hi Sweet Girl,

Your writing is amazing. I am a reader and have not read anyone who is more gifted than you. Keep fighting the good fight, we are all there routing for you every hour of every day. Take the strength, love, and support that is sent your way from your loyal Muselings. We are out here fighting for you too.

Love, Pat

Anonymous said...

Thank you Mr. Emerson for taking your wife's vacuum cleaner, seventy years ago, and sticking the tubing on the exhaust end and giving us a way to open up our lungs with high air flow and pressure. And then to find a way to blow AND suck air into and out of weakened lungs electronically. And to the Respironics company (now a part of Philips) who continues to upgrade and sell this relatively simple, yet life saving device.
The simple things: a little breath, a little hand, a little look - it all comes down to this.

Anonymous said...

A while back, one of your Muselings wrote that she felt her comments seemed trite. I've felt the same way. After a post like this, anything I can think to say seems inadequate. But, it does seem important to let you know just how much you touch my heart and my mind. You're right, there are so many ways to spell Love. Sending you my LOVE, KK

Anonymous said...

Oh my god, the college dream. My 78 year old mom says still has those dang "I didn't go to this class all semester and now I have a test" dreams. Mine are more like complete confusion - I'm in a class but don't know where or when it meets or can't get to it...I am just lost without the information I need to succeed. Seems like an obvious message! I have a new one where for some reason I'm starting college all over for some reason - but it's an optimistic dream about starting a new adventure - I wake up thinking about what new adventure I can go on. Kind of a nice dream actually. Keep on going as long as you can.
Laurie A. in Albany