Maclen Muses: My Eulogy To Carla Zilber-Smith

Hi Muselings, this is Carla's son, Maclen, and, by popular demand, my final post on this blog will be the eulogy that I delivered for Carla at her Memorial.

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Carla Zilber-Smith was my mom, but she was also my best friend. My hero. My creative collaborator of choice. My confidant, advisor, supporter, travel buddy. If she was “like a mother” to scores of individuals, she was more than a mother to me.

When Carla was diagnosed with ALS, on December 26^th, 2007, I was brought to my knees. Serene as always, she held me as I wept for a dozen hour-long minutes. She gave the emotional moment its due and then said, “Now, you know what I want to do while I can still walk? Go boogie boarding in Zijuatanejo.”

We ended up going to a small town called Sayulita, because it had better waves for boogie-boarding. When we got in the water, it was apparent that she could no longer swim. You know what Carla did? She laughed. And we laughed at the waves, we laughed at the world, and we laughed at the ridiculousness of it all.

On the last day of Carla’s life, still indefatigable, despite having not eaten for three weeks, she said “this has been the funnest death day ever.”

On that day, I read her a piece that I had written for her a year after her diagnosis, and she said, “have I really been dying for that long? I’m a slowpoke.” Deathbed humor, literally.

In that piece, I asked how can one sum up the life of somebody who squeezed 80 years of happiness and 80 years of pain into 47 years. Carla Zilbersmith as not a professor, a singer, a blogger, an actress, a director, a writer, a comic, or a dying woman, she was a bard. A professional human being. She was what a renaissance man would be like if they had a sense of style and didn’t wear those silly tights. She was a method actress, playing the roll of Carla Zilbersmith to a T. People often want to know what they can do for her, for me, and the answer is to take that vacation you’ve been thinking about. Enjoy yourself in her honor. Go on a hot air balloon ride, or go skydiving. Go to the library, pick out a random recipe from a random cookbook, and cook it for a randomly chosen friend. Live the shit out of your life. That’s what it’s for, isn’t it?

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 lived nearly every day of her life. Tragic, is those of you who let this event stop YOU from living the way Carla lived 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 did for 47 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 and I have received from her legions of friends has done nothing short of reaffirming my faith in the human condition, but do you want to know what Carla really wants you to do? Use humor to take arms against the slings and arrows of outrageous fortune. When it rains, think dry skies, and when it’s gray, think bright lights. When there’s pain, just smile, smile. Find happiness on even the worst day. Find love wherever the hell you can, because there’s nothing else any of us can do. If life gives you lemons, say, “hey life, give me some sugar, water, and vodka, I’m gonna make some party lemonade.”

I love my mom, and I’m crushed that my time with her has come to a close, but I am grateful that she is free of her suffering now. I am grateful that she lives on in albums of beautiful music. Not just those that she wrote, but those that were meaningful to her. Vita Brevis, Ars Longa. I am grateful that she lives on in two books worth of blog posts, which will someday give my future children an idea of the type of advice their grandmother would have given them. I am more than grateful that she will live on in the memories of those who she touched, those she made laugh, and the scores of people who she doesn’t even know whose lives have been changed by her writings, her songs, her teaching, her advice, or her life story. And I hope, more than anything, that she lives on through a conscious effort by each and every one of you to push the boundaries of what you’re comfortable with. To do something wacky and creative that you’ve always wanted to try. Even just to make an inappropriate joke because it’s fucking worth it.

I have worn two personalized wristbands on account of Carla, and I think they show the two sides of her philosophical coin. This one says “Ad Astra Per Aspera,” “through the thorns to the stars.” It means that you should strive to do what you want to do even in the face of difficulties placed in your path. The other wristband, which I don’t have with me, says “Give up.” It was an ironic parody Carla created of inspirational wristbands, like “Livestrong,” but I think it also had a powerful message. The first noble truth in Buddhism is that there is suffering. I believe that “Give Up” simply acknowledges that we aren’t going to be able to avoid the painful part of life. In conjunction, Carla’s philosophies of “Give Up” and “Ad Astra Per Aspera” say that life is going to happen to you, but that doesn’t mean that you can’t happen to life.

Thank you all for everything.

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And that's all, folks. I hope you have enjoyed the wonderful and sometimes tearful ride that this blog has been. If you haven't gotten enough of it, the Documentary based on this blog, "Leave Them Laughing," directed by Oscar-Winning Director John Zaritsky, is making the rounds at festivals as we speak. Additionally, there may in the future be a book in the works about Carla, so you may hear more about that in the future.

Carla's Surprise Goodbye

For those of you who were not at Carla's memorial, here is the link to uTube where her surprise goodbye to us all was shown publicly for the first time. Enjoy!

Carla's Self-Penned Obituary

Carla Zilbersmith, born December 15, 1962, died May 17th, 2010. Carla Zilbersmith died in her home of Lou Gherig's disease, also known as ALS. Carla Zilbersmith was mother to Maclen Zilber, her only son...that she knows of. She was also daughter to Jack and Velma, sister to Jason and Stephen. Friend to an amazing group of caring, creative and competent friends, and lover to several very lucky and largely undeserving men. Although ALS is a fatal and incurable illness, Carla never gave up hope that one day her death would be surrounded by a cloud of controversy and speculation. Her final words, spoken through a clenched jaw were "oil can."

Dear Friends and Fans of Carla,
We regret that due to the size of the venue, Carla's memorial will be private. We understand the love and admiration she inspired and welcome everyone to share their favorite funny memories of her here, and encourage you to create your own memorials with the friends in your circle. Memorial gifts are welcome to a variety of places.

1. CPMC Foundation (Forbes Norris ALS Clinic), 2015 Steiner St, San Francisco, CA 94115. Please note on the check, "In memory of Carla Zilbersmith."

2. The Documentary Film about Carla:Leave Them Laughing
http://www.leavethemlaughingfilm.com/blog/donate/

3. The Carla Zilbersmith Performing Arts Scholarship Fund at Los Medanos
College
http://www.losmedanos.edu/scholarships/
Specify the specific scholarship please

4. The Carla Zilbersmith Drama
Scholarship Fund through the College of Marin Foundation, P.O. Box 446,
Kentfield 94914.

5. TEAM CARLA! Bike Ride to defeat ALS team with Carla's caregivers
http://web.alsa.org/site/TR/Events/BayAreaEvent2?team_id=180484&pg=team&fr_id=6771

“I’m Singing”

The Penultimate Musing on Carla Zilber-Smith’s blog, by Mac Zilber.

It’s one in the morning. She’s screaming in pain. It takes a lot of pain to make her shout, you see. She can barely talk at quarter-volume most of the time, and her default pain level, as she will say later in the day, is a 7.5 out of ten. She has a high hurts to hertz ratio. This is a ten.

“My arm is all fucked up,” she weeps, her face a cacophony of agony. I am assured by her nighttime caregiver, Alexa, that all is well, and that I can go back to sleep. Alexa moves her bed into Carla’s room. I go back to sleep.

There’s a knock on the door.

Carla wants to see you.

What time is it?

Six AM.

I don’t hesitate. Well, that’s not true, I do hesitate. A few precious moments. There’s such a low supply of them, and a high demand. Note to self, no more hesitation. I go into her room and she is choking on mucus. I slap her on her back, attempting to dislodge the mucus. No dice. I try again, and again. “Is this how it’s going to happen. Will she pass away violently in my arms?” Finally, after several hour-long minutes, she inhales and I exhale. A symphony of relief.

That one was life or death, she says. Does it count as saving a life if the life is ending no matter what we do? I wonder that every time I stop her from choking. It’s like trying to keep the sand on the top half of an hourglass, or trying to catch leaking water in a colander. I’m Sisyphus, pushing the stone up the hill ultimately to have it roll down. She is Prometheus, bringing light to those who love her, and undergoing subsequent agony. At least, unlike Prometheus, the hourglass will give her a way out. I go back to sleep.

It’s 9 AM. There’s another knock. I go into Carla’s room. She is in her bed surrounded by loving friends. The room is filled with cut-outs of butterflies and hummingbirds, some on the wall, some hanging on the ceiling. When she speaks, it is almost inaudible, but I always know what she is saying. Beethoven is playing on the speakers in the room. She mouths words that nobody can decipher but me.

“What was that?” A friend inquires.

I smile. “She says Beethoven is a buzz kill. She wants to hear ‘No Rest For The Weary’ by the Blue Scholars.”

http://www.youtube.com/watch?v=JIqMIrmpUjc

She smiles. Hip-hop, poetry, people who love her, how could any place be better than this?

There’s no rest for the weary, just another day grinding up stones, until they turn into dust.

“I’m singing,” she says, as I hold her curdled, immobile hand. “I’m singing.” How poetic and meaningful can two words be? If she were to pass away at that moment, I think she would have no complaints.

I then play her a funny and cheery song that is, ironically enough, about prescription drugs. She takes 23 of them.

“I feel fantastic, and I’ve never felt as good as how I do, right now, except maybe when I think of how I felt that day when I felt the way that I do right now, right now.”

http://www.youtube.com/watch?v=zidiWe9yq88

The irony doesn’t escape us. We should be crying, weeping. We’re listening to the happiest song in the world.

It’s noon, and I suggest that we watch the old Twilight Zone Episode, “Nothing in the Dark.” It opens with the timeless voice of Rod Serling.

“An old woman living in a nightmare, an old woman who has fought a thousand battles with death and always won. Now she's faced with a grim decision: Whether or not to open a door. And in some strange and frightening way, she knows that this seemingly ordinary door leads to the Twilight Zone.”

(If you have half an hour to kill, here’s the whole episode: http://www.fancast.com/tv/The-Twilight-Zone/97525/663284963/The-Twilight-Zone-(12-hr)---Nothing-In-The-Dark/videos)

In the episode, a young Robert Redford plays a wounded police officer, who is helped by an old woman who is convinced that every man she meets is secretly “Mr. Death.” After Redford reveals that he, in fact, is Mr. Death, he says to her, “Take my hand, mom.” “When do we go,” the old woman implores Robert Redford. “We have already gone. Was that so bad? You were not torn asunder. What you thought was an explosion was a whisper. What you thought to be an end, a beginning.” She looks in the mirror and sees herself on the floor and no longer living. She smiles, and they walk arm-in-arm outside.

Nurses from hospice arrive. They are not the ordinary ones, but they are capable and confident. They tell Carla that another nurse said that the oxygen tank, which will be arriving soon, would help her “Go softly into the night.” Carla, characteristically, says “Tell him that he fucked up the quote, it’s ‘go softly into that good night.’” Everybody laughs

The nurse tells Carla that, if she and Carla never get to meet again, it was a true honor to meet her.

I love my mom. I want you all to know that she is probably quite close to going softly into that good night. It is heart-rending, but eventually the sand goes to the bottom of the hourglass.

“Death, I’m your reluctant lover. Your embrace I can’t resist. I pull away, say I can’t stay, but you insist*.”

I want you all to know that my mom is singing. We are all her voice. Soon she will get to rest.

* This is a lyric from a song on her album, Carla Zilber-Smith: Uncovered, for those of you who don’t recognize the quote. You can find it here - http://www.cdbaby.com/cd/carlazilbersmith2

I flit, I float, I fleetly flee, I fly...

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"Flat Carlita" and Kris DO Peru!

This is more or less a blog entry from Kris Cardall. She and her family went to Peru and brought "flat Carlita" taking pictures of her at several landmarks. Ironically, one of the things I always wanted to do was see the steps of Machu Picchu, but by the time I was thinking of Bucket Lists I couldn't climb stairs. Lucky for me Kris took "flat Carlita" on the adventure that "perfectly proportioned Carla" could never make. Here it is with Kris' commentary below:

In the Cusco airport. No handicapped bathrooms (or toilet paper) here!

Chillin' in the Cusco plaza.

Looking to score some weed on the streets of Cusco.

Rockin' out with the band.

Shopping spree, Pisac style!

She may not be able to enjoy the food and wine, but she can still hang out with the apostles.

Just off the train in Agua Caliente.

In the Sacred Valley. Butterfly Power!!

Flat Carlita checks Machu Picchu off her bucket list!

It's a little hard to wheel around on the floating reed island, but she makes it work.

Out for a spin in the motorboat with some new friends.

Maclen Muses: A quick update

Hi Muselings, it's your best friend Mac, writing to give you an update on how Carla has been lately, since it has been a while since her last blog. If you are expecting razor-sharp wit, astute analyses of life and current events, or some deep spiritual crap, this is probably the wrong blog post to read. Just kidding, whenever I open my mouth, or keyboard, as the case may be, it is deep, witty, and razor-astute (yeah, I just made up a compound word. Deal with it).

The first, and most important thing you need to know about Carla's current physical state, is that the 'S' key on her keyboard is out of commission. Now, it was one thing when she lost her ability to walk, and another thing when she lost her ability to croon like so many songbirds, but imagine losing your ability to pluralize! I am typing on said keyboard, and it makes me feel like my mirror motor neurons are firing. Anybody who both reads Daniel Goleman and ALS literature will get a minor chuckle out of that sentence.

In seriousness, Carla isn't doing all that well. She is no longer really capable of eating, and has made the decision not to get a feeding tube either (note that even if you were to convince her otherwise, it is too late, so save your well-crafted arguments for your next pinochle dispute). Additionally, she is rarely able to get out of bed, though she was able to do so for her father's surprise birthday party yesterday. For possibly the last time, at my urging, Carla wailed on a piñata like there was no tomorrow. Not that she didn't have evidence that there was a chance of there being no tomorrow.....Perhaps the most amusing part of her frail attempts to hold the bat between her legs while swiveling the chair left and right, besides the fact that she still did a better job than Kathy Sprague, was that her lovely caretaker Mayra, who was holding the string to which the piñata was fastened, has never heard of the "handicap for the handicapped" unspoken rule in athletic endeavors, and moved the piñata up and down like she would for a healthy person. I, of course, dominated the piñata game, but I won't write about it, not because it isn't enthralling, but because I'm sure that you each have a mental image of me swinging a bat at a piñata that I don't want to ruin, because I probably didn't have quite as sosa-esque a performance as your projection of me had.

While there is no way to know with ALS, Carla is certainly in the last stage of her life. She is not in a great deal of pain, due to the 21 drugs she takes (most of them prescribed...), specifically the methadone, which she says is like having a layer of cellophane between her brain and her consciousness. Which is something that she would never say, she points out, were it not for the bevy of drugs she takes. She additionally planned a surprise party that she forgot she planned, and sang frosty the snowman with no remembrance of doing so. Do not despair, however (well, okay, you can despair a bit, but not about this!) as these effects are solely due to twenty-first century pharmaceuticals, and not Amyotrophic Lateral Sclerosis.

The basic bottom line, all Macky charm aside, is that, since she can't eat, how long she lives will be determined by how long she can keep swallowing. She hopes to continue swallowing until at least the summer, but certain medical professionals indicate that such a hope may not necessarily be met. She spends most of her time in bed now, and it is, as you can imagine, a very difficult time for her and those who love her.

Send your thoughts her way, and I'll keep you updated. Just because I'm writing this update, however, does not rule out future blog posts from her. She is working on a blog post currently, but she is doing it by herself, so it takes a long time.

If you're feeling down after reading this, Carla would suggest watching this video to cheer up: http://www.youtube.com/watch?v=ZqR_SwwByMM

Megan

I myself am not much of a "prayer" but if you are would you please save room in your prayers for my friend Megan Mishork. She is a feisty, wonderful 25 year old with ALS who is now in ICU battling double pneumonia. Trust me pneumonia and ALS are a very dangerous combination so she needs all our good energy. Thank you.