Thursday, June 10, 2010

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.

____________________________

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 26th, 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.

_____________________

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!

Tuesday, June 01, 2010

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

Wednesday, May 12, 2010

“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

Saturday, May 01, 2010

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

On Pine Crescent, between Thirty-Fifth and Thirty Fourth, a giant redwood fence covered the double lot down the street from us. The fence was so high we couldn’t see what kind of house lay within, but our imaginations ran wild. Lucky for me, there was a conveniently located knot in the wood and I used it as a peephole. Through the hole, I was able to see a magical bridge over a pond with real lily pads. The other kids told me if you snuck onto the property, you could catch real live tadpoles, but you had to bring your own plastic bag. The trees on the property were this thick canopy so only dappled sunlight could penetrate the firs and maples above. The ground was covered in ferns all of which seemed to love the shady magical space.

I always imagined what kind of people lived there. Some days, I imagined a crusty yet friendly groundskeeper. Other days, he was an evil man who would kidnap me were I to try to pilfer his precious tadpoles.

A little further down the road was Quilchena Park, where we would toboggan in the winter and where our upscale neighborhood’s version of “rumbles” would occur at dusk on a warm summer night. Further still were the train tracks where we would sit and wave to the conductor or put pennies on the tracks and see what happened to them.

Every memory of every little moment is so clear to me. I think that’s one of the blessings of being young. You’re so present to the gifts in front of you that every sense is awakened. I can still remember every smell, the sound of each individual bird, the feeling of the sun at different times of the day, and how it reflected off the grass or the snow or the sand. More and more I find myself back to one of those places. I sleep more than I’m awake and I take a ridiculous number of drugs so it’s not surprising that I’m doing a little time-traveling.

I used to sit under a tree in Quilchena Park and try to write a poem that would be worthy of the beauty around me, but I always failed... partly because I was still stuck on that whole rhyming thing.

The other night, my sheet had trapped my arms while I slept. I woke up and I needed to call my caregiver for help. It was then that I realized I no longer have the arm strength to move a single twin sized sheet. I was unable to ring my call bell and did not have the lung strength to yell for help. I was trapped in my own bed. In this kind of situation, one’s first instinct is to panic. Trust me, this does not help at all. I lay in the bed and this poem by Hafiz came to me.

Dropping Keys

The small man

Builds cages for everyone

He

Knows.

While the sage,

Who has to duck his head

When the moon is low,

Keeps dropping keys all night long

For the

Beautiful

Rowdy

Prisoners.

This poem made me realize that by calling my body a prison, I was that small man. I had to transform the metaphor of body as prison into something else. I imagined my body was a sandbag on a hot air balloon to be hoisted over the edge of the basket in order to gain altitude. I needed to release my body—my sandbag—to allow my imagination to soar.

I told this story at a couple of talks I gave and, apparently, it made an impression on a couple of my caregivers because one of them, Alexa, designed a hot air balloon tattoo and the other, Jenny, agreed along with Alexa to surprise me with matching arm ink. On the day they were supposed to show me their surprise, their tattoo artist flaked and when they came over, I had to tell them that I was no longer eating food and this obviously meant my life expectancy was considerably shorter than we had hoped. They decided not to wait to surprise me, and when they told me their plan, I said, “Aw Hell, what’s one more tattoo?” and agreed to go along with them. My former caregiver/pseudo-daughter, Jamie, flew in from New York just to get the tattoo with us (her first). Here are a few photos from that auspicious evening.




After reading about my tattoo, my brother wrote to me; “I was thinking about you getting a new tattoo and I saw that you had said Dad was considering getting one, too (I thought that part was an April Fool's gag). I briefly considered getting a tattoo myself and then realized that I am just not a tattoo person. I mean, I kept trying to picture some place on my body that I'd be okay having ink permanently injected into it, and I just couldn't find one. I don't have a problem with tattoos, it's just that we get along better from a distance.

But then I was thinking, well, if not a tattoo, what could I do instead that would be an acceptable alternative? I got an idea that I ran by Allison and she liked it. So, we are instituting a new rule in our family. We're going to call it the Auntie Carla rule and we're going to make sure the kids learn it well. The rule is this: At least once a year, you have to do something that you've always wanted to do, or go somewhere you've always wanted to go, or try something that you always wanted to try but scares you a little, or just do something outrageous and worry about the consequences later, or say yes to a ridiculous dare. Basically, it's about saying yes when you usually say no. I'm not so much into skin tattoos, but I think of this as a kind of tattoo of the soul”. Needless to say, this idea for a tribute makes me very happy-a gift that keeps on giving.

Last week, I had a visit from my friend Megan, who also has ALS. She’s Miss December 2010 in the ALS Calendar. It was great to see her, but a little sobering to watch her family dealing with her trache and new feeding tube. In that period, she was using my cough-assist machine, and it looked like she was in a lot of discomfort although she didn’t complain much. The next day, she was rushed to the hospital with double pneumonia (from which she is now recovering, thank goodness). Amidst their horrible family crisis, Megan got her mom to have 160 Gerber daisies delivered to my room. She had wanted my entire room to be filled with my favorite flower and she succeeded. I don’t really have words to talk about someone who would be thinking of other people and acting on those thoughts in a time of such great crisis, but from now on, when I think of Megan and her family, here is what I will see:


But let me describe my room pre-160 gerber daisies. My caregivers have strung bright-colored lights all around the room. They have wrapped ribbons around the bars of the hospital bed so you can’t tell how ugly it is. They have pasted butterflies and hummingbirds on the walls. Alexa has made terrariums for the window, and brought me a giant brass Om. They have hidden the medical equipment under tapestries and tablecloths. The colors are deep and rich and lively. And Kathy just bought me a fresh copy of my favorite novel, so everyone can be reading from the same book when they read to me. Obviously, my preference would be to get out and lead my normal life, but that is not the plan, so a magical world has been created right here.




Mac came to see me last weekend and I was telling him about a visit from another young person who has ALS. His name is Corey Reich and his ALS mercifully is progressing relatively slowly. Mac said to me, “It makes me sad to think that Corey will one day be in the kind of shape you are,” and I agreed and pondered aloud why a reasonably healthy, fantastic young guy like that would want to visit someone who is a) older than his mom and b) a harbinger of things to come and Mac says, “It seems like a weird thing to do, but don’t forget: you’re a cool dude.” You have no idea what it feels like to have your teenage son tell you “you’re a cool dude.” It may be one of the peak moments of my life.

In my conversations with Mac, my dad, and others, I’ve realized that there’s actually nothing for me to be upset about. Everything I fear and dread is going to happen in the future and it’s not happening now. Therefore, I’m doing what I call “pre-emptive worrying.” The reality is when all of the things that I dread come to pass, I won’t exist but my other loved ones will have to deal with their grief, loss, etc. I won’t be conscious and I will be blissfully ignorant of the wreckage left behind. So I could spend time worrying about things that aren’t happening right now, or I can enjoy and love the people in my world and accept that no one (not even me) is indispensable. Those I love can grieve without my help. I think that’s my thought of the week: suffering is dramatically reduced when one opts out of indulging in preemptive worry or grief.

The other thing I told Mac was that when people try to comfort him by saying, “She’s in a better place,” they are only half-full of shit. I mean, look around you. Listen to the birds. Watch the kids stumbling and taking their first steps. Hear one piece of the billions and billions of pieces of music that have been written. Watch the way the sun lands on a house or a tree. I defy you to think of a better place than this. I fucking love this place. It’s an awesome world and it never ceases to surprise me or make me laugh out loud. There can’t be a better place. On the other hand, from the point of view of my physical body, there is a better place. When choosing between “suffering” and “not-suffering,” I recommend all non-masochists choose “not-suffering.” When I die, I will be going to a better place because I won’t deal with the daily discomforts and indignities and yes, often, pain that this body has dealt with in the last couple of years.

I learned a lot from my experiences with ALS, as well as my experiences writing this blog. Almost everyone has a story of loss or longing and almost everyone desires a way to find meaning in our lives that whirl past us so quickly. Almost all of us count our loved ones as our most cherished commodity and yet, so many of us don’t have or make time to spend with them. We want to stop and smell the roses, we want to fully embody gratitude in our hearts and minds, we want to be the best ‘us’ we can be, and yet the road is beset with detours and roadblocks.

I will gradually fade in people’s memories, so that even my son or my dad will have to look at a video or a picture to remember what I looked like and what I sounded like. This blog, whether it becomes a book or not, will be relegated to the shelves of both minds and/or libraries. Nothing lasts forever. The formidable boulder becomes a grain of sand swept away into the sea. All we have is now. I’m going to keep making the most of my now. I’m going to try to avoid preemptive sadness and I’m going to urge people who read this to…

...Yeah, I couldn’t finish that last sentence without sounding like a pompous full-of-shit windbag. I’m just dying, I’m not fucking Nostradamus. In fact, I’m not fucking anyone, which is far more disconcerting than dying. Imagine knowing you won’t have sex for the rest of your life. Doesn’t that make you want to go jump your husband’s bones right now? Shut down the computer and do it. Or surprise him at work with a blowjob. Anyway, that’s the kind of advice I’m better at giving. Dying teaches you how to live, but it’s very site-specific. Everyone has to learn it their own way.

I don’t believe that to everything, there is a purpose. I don’t believe in a logical, just universe. I believe in randomness. Having said that, if me dying has been helpful to anyone or made anyone realize the depth of love they have for this world or for the people around them, then I’m pretty pleased about that. I’m also really stoked that I’ll be eternally good-looking. Personally, I was not looking forward to arthritis, jowls, cellulite, or the inability to recognize when I was wearing too much perfume.

I have decided that while Mac and others may continue to post, this will be my final post. I’ve said everything I want to say and everything comes to an end. ALS has been calling most of the shots, but not this one. I get to decide when this great experience called the blog is over and I call it. It’s over.

It’s been an honor to have people read and comment on this blog. Thank you for everything you have taught me and for all of the kind words that have lifted my spirits. News will continue through this blog, including specifics about my funeral, which I guarantee you will be the world’s most hilarious funeral ever conceived by man.

But you already knew that, didn’t you?

Wednesday, April 21, 2010

"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.

Saturday, April 17, 2010

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

Tuesday, April 13, 2010

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.

Monday, April 12, 2010

A song for Carla from a student, admirer and friend

Hello Faithful Carla Community,

I've been priviledged to submit this video of a song I wrote for Carla.

Here are the lyrics:

I can't see any way out, out of here...out of here
But through, your warm embrace, midnight faces home again
and Flames, they weight the light, that keeps the fight, we pray to meet
Head on, unless we fall away, like petals may on a moonlit night
(break)
And cares they lift me high like a lullaby wrapped in flight
I dreamt I was in a baloon and everyone below waved and glowed
Goodbye - I loved the best I knew, Next time I'll do...better.

Thanks

Hugo




video

Monday, April 05, 2010

Still time to buy calendars

Hitler and ALS from Richard Ross on Vimeo.

My friend Richard Ross created this overdone meme and breathed new life into it for ALS research. Thank you, Richard, you are brilliant. Hitler is right. It's fucking April and you still have time to buy calendars at a discount even.

I'll try to post again but I am as good as in Hitler's bunker at the end of the war. The walls are closing in and it won't be long now. For now, enjoy this and I defy you not to laugh until you pee or fart.

Monday, March 29, 2010

Tuesday, March 23, 2010

Maclen Muses – Explaining The Health Reform Bill

Explaining the Health Care Reform Bill By Mac Zilber


For those of you who know my mother, she has been advocating for universal health care since she moved to this country from Canada. She wanted me to write a guest blog for her to explain to her readers why, even though the health care reform that was passed yesterday is not quite universal, per se, it is a truly wonderful accomplishment for our country.

For those of you who know me, I am a policy wonk, so, rather than opinionate on the magnitude of this accomplishment, which, to be clear, I think is perhaps the greatest social achievement of our congress since Medicare, Medicaid, and Civil Rights, I am going to exercise my comparative advantage, which is to clarify to readers what exactly it is that this health care bill does.

The problems of the existing health care system that this bill sets out to remedy are the unparalleled costs of seeing a doctor in the United States (this is a good graph http://voices.washingtonpost.com/ezra-klein/2010/01/america_spends_way_way_way_mor.html) and the number of uninsured in the United States (about 50 million today, with another 20-30 million underinsured).

The uninsurance issue is dealt with by a tripod of regulating, mandating, and subsidizing insurance. Each leg of this tripod is necessary or the framework falls apart, as I will explain.

The regulations are numerous, and largely consist of piecemeal fixes to specific abuses by insurance companies. Insurance companies will no longer be able to take away your coverage if you get sick (While Carla has kept her coverage, nearly 50% of people who have medical expenses as high as hers lose their coverage), deny you coverage if you have a pre-existing condition, or charge you more because you’re a woman. There are a host of other regulations (the “doughnut hole” in Medicare is closed, youths like myself are allowed to stay on their parents’ health plan until they’re 26, and plenty more things that nibble around the edges), but these are the regulations that have received the most fanfare. The other important step towards ending the worst practices of insurance companies is reinsurance and risk-adjustment. Essentially, when an insured individual starts to cost large amounts of money to insurance company, there is a financial incentive for the insurance company to try to find a loophole by which they can drop that individual (though that will be much harder now). To remedy this, the government will set up a risk adjustment framework so that a sick person will be of the same expected value to an insurance company as a healthy person, thus removing that incentive. The final regulation I will discuss in this section is that there will be no more annual or lifetime caps on how much coverage you can receive, and out-of-pocket payments will be capped (at $5000 per year) as well. This is of incredible import to those of you in the ALS community whose out-of-pocket payments can extend above $100,000 per year. If this bill had been in effect when Carla got sick, she would likely have saved tens of thousands of dollars from the combination of all of these regulations.

Now, one of the most misunderstood parts of the plan is the individual mandate, which requires people to get health insurance, or, more aptly, creates a slight personal incentive towards getting health insurance. This has been mischaracterized as, alternately, a corporate buyout or a government takeover, but it is truly no such thing. Essentially, it says that, if you can afford health insurance (if the cheapest insurance plan available to you is less than 10% of your income), you need to buy it, or you will pay a penalty equal to 1% of your income. The reason for this is to prevent people from taking advantage of the new regulations by not signing up for insurance until they get sick.

Imagine a simplified insurance plan in which there are 5 people. One of them, say, Carla Zilber-Smith, costs the insurance company $50,000, and the other four cost the insurance company an average of $2,500, because they’re young and healthy, like, say, me. The insurance plan ends up costing $12,000 for each person (we’re removing administrative costs for this model), and, while it ain’t cheap, nobody goes bankrupt.

Now, imagine an alternate scenario in which I decide that, because I’m not currently sick, I won’t buy health insurance. Suddenly, the premiums of the remaining four people on the plan jump to about $15,000, and one of the other people can no longer afford the plan, and they leave the plan. The plan now costs $18,000 per person. Then I get sick, and my medical expenses are $50,000. Since the insurance company can’t deny me for pre-existing conditions, I re-join the plan, and the price per-person is now $26,000. At this point, the remaining two healthy people drop the plan, and the risk pool falls apart. This is known as the insurance death spiral. If you don’t allow insurance companies to deny for pre-existing conditions, you need to mandate “young invincibles” like me to buy insurance or the entire system goes into a death spiral, with only sick people buying health insurance.

Now, when you’re mandating people to buy a product, especially one as expensive as health care, you need to make it affordable, and that is where the subsidy part of the framework comes into play. For the first time ever, Medicaid will be available to any adult making under 133% of the poverty line (about $29,000 per year for a family of four), and, as a result, 17 million low-income individuals who are currently uninsured will be on Medicaid by 2016. People who aren’t poor but aren’t rich will receive a sliding scale of tax credits to make health care affordable for them, to the tune of about $80 billion dollars per year. This change will insure millions more people. This whole regulate-mandate-subsidize mechanism will ultimately reduce the number of uninsured Americans by around 32 million, meaning that, by 2016, 95% of Americans will be insured. It is also worth emphasizing that the bill requires that every insurance plan meet a certain standard of quality, so no only will 30 million people who would have been uninsured now have insurance, but tens of millions who are underinsured will now be more adequately insured. Finally, of the remaining 20 million or so who will be uninsured after this bill comes into effect, millions of them will be eligible for insurance, and will be able to enroll free of hassle if they become sick, and millions more are illegal immigrants. Indeed, if an immigration reform with a path to citizenship is passed, the number of people who aren’t either insured or operationally insured will drop to about 1-2% of the country.

To control costs, the health reform bill does a number of things, but there are three main ones: Bundling payments, an excise tax on high-dollar insurance plans, and the breaking up of insurance monopolies.

Bundling payments is arguably the most promising of the ways in which this bill controls costs. Currently, when you go to the doctor, your insurance company pays for each procedure individually, based on its marginal cost of the hospital. In economics, the cost of a service is typically the same as its marginal cost to the provider of the service, but, as Ken Arrow explained in his work on health and welfare economics, there is moral hazard and adverse selection at play when it comes to health payments. Say whaa? Essentially, what this means is that there is a financial incentive for a provider to give you insufficient treatment, or to over-treat you, because it means more treatments and more money. For instance, when I had a painful hot-spot on the bottom of my foot, it was misdiagnosed three times, I was given three prescriptions, three tests, sent to a specialist, and it turned out to be plain old athlete’s foot. I am not at all impugning the motives of the doctors involved, as they are great individuals, but the reality is that when you create an incentive scheme where such misdiagnoses are rewarded with more payment, you are going to have worse results. What this bill does is it creates a pilot program in which hospitals begin to be paid based on results, and what the cost should be, rather than the marginal cost is to them. In other words, a health care provider, if this is ultimately implemented systemwide, will know “I am going to receive X dollars to treat this specific symptom, therefore, I have nothing to gain by not doing it due diligence the first time around.” A provider of psychiatric health, who I will leave nameless, once told me that he sometimes feels the temptation to tell people that they aren’t cured, because his employer gets paid for each additional visit. By removing these incentives, this bill will allow doctors to have their good intentions and their financial incentives be aligned.

The excise tax on high-dollar insurance plans has been an oft-criticized part of the plan, and, much like the individual mandate, it is because it isn’t well understood. Essentially, every dollar over $27,500 that your employer spends on your health insurance plan is taxed at 40%. That means that, if your health insurance plan costs $28,000, the last $500 of it will be taxed, and you’ll pay a $200 tax on it.

The reason that this will control the growth of health care costs is that the current system, in which health insurance costs are exempted from taxation, creates a massive incentive towards overconsumption of health care, resulting in national per-person expenditures on health care that are over 70% above those of any other country in the world. How does this incentive work?

Imagine that Goldman Sachs has $500,000 to spend on a valuable and well-off employee. Each marginal dollar spent on her salary is taxed at 32%, whereas each marginal dollar spent on her health insurance plan is currently taxed at 0%. This means that, in a simplified model, without taking into account any of the nuances of the tax code, if this employee is given $490,000 in salary and $10,000 in health insurance, she’ll receive an after-tax salary value of $343,200. On the other hand, with the current incentive scheme in place, if she receives $450,000 in salary and $50,000 in health benefits, she will receive an after-tax salary value of $356,000. For any employee, health benefit spending will increase until it reaches an equilibrium in which the employee values $70 dollars of additional salary more than they value $100 of additional health benefits. This distortion in the incentive scheme is a huge reason that our health care costs rise at 7% per year.

Now, here is how the excise tax helps fight that. Going back to the example of the high-paid executive for Goldman Sachs, in the first year of the excise tax going into effect, her incentives, and the company’s incentives, point towards her health benefits dropping to $27,500, and her salary increasing to $472,500 to pick up the slack. Over time, this tax begins to affect more and more people, and, thus, squeezes more and more overconsumption out of the system.

The final way in which this bill will reduce costs is to create a competitive market for insurance. Currently, the vast majority health insurance markets would be considered to be in violation of anti-trust laws if the insurance industry didn’t have an anti-trust exemption. This will change that. Essentially, when you’re purchasing insurance, you will be able to go onto a website similar to Amazon.com (product placement, yay) in which all insurance plans in your state are compared side-to-side, with reviews, ratings, benefits, etc. Imagine if you called every car dealer within a 50 mile radius and said “I am going to buy a car, and I am calling every car dealer in a 50 mile radius. Whoever makes me the best offer will make the sale.” It would be pretty hard for a car salesman to gouge you on the price, huh? Similarly, by listing all plans next to each other in a competitive market with community rating, insurance companies won’t be able to jack up prices or reduce benefits without you, the customer, being able to switch plans. By 2019, 8 million people will have switched from their current plan to purchasing health insurance on the exchanges, and an additional 16 million people who were uninsured will have purchased health insurance on the exchange. By giving the consumer power, costs will be controlled, and insurance companies will have to compete in the good old fashioned way; by offering a better deal than their competitors.

The last question people typically ask is how we are going to pay for this. The costs per year, once the plan is in place, will be about $160 billion per year, or about 1% of our economy. The tax on Cadillac plans, a small payroll surtax on the wealthy, and certain fees to be payed by insurance companies, drug companies, and hospitals, will yield about $70 billion per year (though this number will increase substantially after about 10 years). Targeted cuts in Medicare waste and fraud, as well as some of the aforementioned cost controls, should save about $100 billion per year, though this number will also increase over time. Over the first ten years, this bill will yield a surplus of about $138 billion dollars (a relatively small amount, over ten years, but a surplus nonetheless). Over 20 years, this bill will reduce deficits by over one trillion dollars, though many economists believe the number will likely be even larger than this. This bill on its own will not prevent a sovereign debt crisis, barring further action, but it will be the most fiscally responsible bill that congress has passed since the Clinton budget of 1993.

At the end of the day, though hundreds of billions of dollars, tens of millions of insured people, and tens of thousands of saved lives will all be nice perks, I think that Carla has the best sales pitch for what may prove to be the crowning social achievement of our generation: “For the first time in our country’s history, if you’re sick, no matter who you are, you can see a fucking doctor.”

Mac Zilber is Carla Zilber-Smith's son. He is studying American Politics and Comparative Politics at the University of California at San Diego, and is the Director of Policy for the UCSD Student Government. He is a huge nerd. The kind who you would probably push into a locker if he wasn't six feet tall, funny, and good-looking. And yes, he wrote this blurb, and is just talking about himself in the third person. Feel free to ask him any further questions, as he is willing to talk ad nauseum about policy, and he figures he probably has at least one unclear sentence, given that this blog is ten pages long and wasn't really edited.

Sunday, March 21, 2010

Reminder

A Night of Gratitude - A Special Evening With Carla Zilbersmith

Tuesday, March 23, 2010
Time:6:30pm - 8:30pm
Location:
Novato Seventh-day Adventist Church
495 San Marin Drive
Novato, CA


Description
Carla (the star of Leave Them Laughing, directed by John Zaritsky) will be giving an extremely rare lecture about her life and how she learned to appreciate the beauty of every moment despite being diagnosed with a fatal illness, ALS (Lou Gehrig's Disease). Carla has truly learned how to embrace every succulent moment and she'll show you why you should too.


Come for inspiration. Leave changed.

To reserve tickets or for more info,
Email: ANightOfGratitude@gmail.com
or call 415-497-2313
$15 donation requested

For more than fifteen years, Carla Zilbersmith wrote and presented an amazing array of musical and theatrical scores, scripts, one-woman plays, and songs. Carla and her band the SubUrbans were Lilith Fair finalists, she was the founding member of We’re Redheads, a women’s sketch comedy troupe, and Lighten Up John, a musical improv group, as well as serving as the Artistic Director of the College of Marin Drama Department before ALS rendered her unable to perform, sing, or teach.

Monday, March 15, 2010

What This Night Is Like

It’s somehow coming to the conclusion that the only way to make this night tolerable is write a blog (maybe the first ever) while on the toilet unable to shit.

It’s waking up in the morning and checking Facebook to see that you’ve lost another friend. Nobody unfriended you or defriended you. They just had ALS and they died.

It’s one minute caring a lot about a hair style or the latest crazy idea turned into a big project and wishing the next minute that you could just die already.

It’s feeling a fist sized shit rip your asshole open and not being able to bear down or catch a breath. It’s that you have this feeling not once but twice in one day even though you cut out morphine and had a prune smoothie.

It’s 21 drugs and counting and wondering when you will be dubbed the fucking Baskin Robbins of pill poppers.

It’s realizing that expecting a clear sign that it’s time to die is like driving down a pitch black remote country road and expecting to hear “All Things Considered” or “Wait, Wait, Don’t Tell Me,” instead of hours of white noise and static mixed with snippets of some crazy fundamentalist ranting about the gays and the Jews.

It’s paying a heavy price for every fun day.

It’s wondering why the others like Megan or Scott seem to handle so much more crap than you do and wondering if you are a wimp or if you’ve just had enough.

It’s running out of words but still not passing this fucking ball of shit.

It’s realizing that life is a no good rotten man who beats on you and cheats on you and looks just like Jon Hamm as he stares in your eyes and whispers softly “come on baby, you know we are meant for each other.” And instead of wanting to quit him, you wanna hang in there for one more great shag. Fuck you Jon Hamm.

It’s knowing that someone is going to commiserate with you by saying, “Girl, I know what you mean. I was constipated once” and you are going to have to bite your tongue and not say, “Unless you have ALS, you do NOT know how I feel unless you’ve rubbed a cheese grater across your asshole for a good 10 minutes at least.”

It’s exhausting.

Fundraiser Posted by my friend, Gina

A Night Of Gratitude

A Special Evening With

Carla Zilbersmith

Tuesday, March 23rd
6:30pm
Novato Seventh-day Adventist Church
495 San Marin Dr., Novato

Carla will be giving an extremely rare lecture about her life and how she learned to appreciate the beauty of every moment despite being diagnosed with a fatal illness, ALS (Lou Gehrig's Disease). Carla has truly learned how to embrace every succulent moment and she'll show you why you should too.


Come for inspiration. Leave changed.

To reserve tickets or for more info,
Email: ANightOfGratitude@gmail.com
or call 415-497-2313
$15 donation requested

For more than fifteen years, Carla Zilbersmith wrote and presented an amazing array of musical and theatrical scores, scripts, one-woman plays, and songs. Carla and her band the SubUrbans were Lilith Fair finalists, she was the founding member of We’re Redheads, a women’s sketch comedy troupe, and Lighten Up John, a musical improv group, as well as serving as the Artistic Director of the College of Marin Drama Department before ALS rendered her unable to perform, sing, or teach.

Saturday, March 13, 2010

Happy Birthday Kaila

In the late 1990's, I was driving to work and listening to the radio when a haunting and compelling artist was introduced to me. Her music affected me so much that I pulled off the highway to write down her name. After work I drove straight to Down Home Records and bought Kaila Flexer-Third Ear. Little did I know that ten years later this amazing composer and violinist would be one of my best friends and one of a small handful of people who would dedicate time every week without fail to the grunt work of helping me out. I don't know anyone with more responsibilities than Kaila and yet she has made it a priority to be there for me for all the tough stuff - overnights with coughing and suctioning machines malfunctioning, getting me ready to go onstage while I howl and sob like a wounded animal, ruining my make-up in the process and taking me out for dinner and having to feed us both.

Kaila balances her performing career and her teaching career with raising the most remarkable ten year old daughter, Lucy. Kaila 's ex is a touring musician so while she is not really a single mom, her life often looks like she is one. How she manages to find time each week for me is anybody's guess

Kaila has written not one but three beautiful pieces of music for me. One of them is posted after this blog and if you like what you hear, go to www. kailaflexer.com. There are so many legitimate reasons people have for not carving out time in a busy life to help a sick friend and Kaila could use almost all of them but instead she chooses the tougher road. But this is not why I love her. I love her passion and her indefatigable romantic spirit. I love her irritating perfectionism and her unwavering artist integrity. I am stirred by her moral outrage and wickedly amused by her lady like sensibilities that I disturb on a regular basis. Kaila is an amazing mother and the fierceness of her love has paid off. Her daughter is a strong, independent, creative and hilarious kid whose visits beam a floodlight of joy onto my day. But Kaila is not just mother to Lucy, she is maternal to friends in need too. She is the kind of friend who will drive you to the airport, fix you the perfect snack or move heaven and earth to help you in your performing career. She is also unusually beautiful. When Kaila plays music this fiery passion consumes her so even straight women thinks she 's hot.

I like to tease Kaila about how easily she cries (we're talkin' so so easy) but truth be told I envy her overflow of compassion I am moved by the way she feels so deeply on someone else's behalf.

So here's to my beautiful crazy brilliant loving friend. Happy Birthday Special K! I love you. .

Teslim - Stone's Throw (for Carla)

Wednesday, March 03, 2010

News Flash: There are literally thousands of religions

I received what I believe was a very well intentioned blog comment the other day. I have had many of these kinds of comments and the blog below is one that has been a work in progress, which I come back to every time someone expresses concern for my immortal soul. I’ve never had the guts to actually post it lest someone take it the wrong way, but here goes:

The lady who wrote me this time hoped that when my suffering ends, I would be able to rejoice for eternity in a new and perfect body if I simply confessed my sins, believed on (sic) the name of Jesus as the son of God, and asked Him to save me.

First of all, my caregiver Alexa wanted to know if my new perfect body would have red hair and great tits because otherwise it would be a downgrade. Second of all, some of my best friends love Jesus and third I want to say to anyone who follows any faith that I’m happy you have a source of comfort in your spiritual beliefs. I can only surmise that these beliefs are very deep and profound for you and have helped you tackle the challenges in your life. You found something valuable and I understand the desire to share it but give me a little credit, will you?

That being said, I am not a Christian. I am a very spiritual person and it is for that reason that I have difficulty aligning myself with any given faith. When my brother and I were young, he believed that God invented all major religions so that people with different ways of worshipping could all feel a part of something. It was a charming and hopeful theory, one that put the brightest face on the way in which humanity has used God, faith and religious beliefs to commit unthinkable crimes. Sadly, I must say that ever since the Middle Ages the Christians have been the top contender for the gold medal of the Atrocity Olympics.

But what does that have to do with Jesus, you might ask? Very good question. After all, should he be held accountable for all of the cruelty and evil that have been done in his name? If we look at Bible II – The Return of the Son, do we not find in all of his teachings the keys to compassion, to equality, to social and economic justice?

Hell yeah.

Muslims believe Jesus was a prophet. Some Jews call him Rabbi. Historians versed in Aramaic would use literal translations of the text recounting Jesus’ last days to prove he was a revolutionary—a Che in sandals. Did you know that the Aramaic word that we have translated as garden (as in Garden of Gethsemane) is more literally translated as fortress? Many scholars believe Jesus and the Apostles did not surrender peacefully to the Romans after a kiss on the cheek but rather, fought to hold off their foes behind the formidable walls of Gesthemane.

Did you know that the Gospels of Matthew, Mark and John are wildly different in their accounts of Jesus’ last days? It’s my guess that Jesus was probably a composite character of a number of amazing men: rabbis, prophets and revolutionaries. All of these men, no doubt touched the lives of the people with whom they came in contact. None of them, I would imagine, turned loaves into fishes, walked on water or rose from the dead; but when we encounter someone so much larger than ourselves, someone who is capable of expressing so much more than we can, why not say, “He came back to life.” Or “He turned water into wine. Because the miracle of encountering such a person is so over-whelming that only metaphor can do the experience justice.

That’s why for me, God is in the first movement of Beethoven’s Third Symphony. God is the soft touch of lips on skin. And God is in people, like someone (let’s just call him… Jesus) who leave the world better than it was when they arrived.

I don’t want to convince anybody that their religious faith is not real or valid. I’m just letting you know that sometimes you need to find out to whom you’re talking to before you tell her that Jesus is the only answer. You may be talking to someone with deep roots in another religion. You may be talking to someone who is dying and who resents being told how to do something that you yourself will not (I hope) be experiencing for sometime. You may be talking to someone who has studied biblical history or who has read so much of the Sufi poets’ devotional works to God that she can recite dozens off by heart. You may be talking to someone who spends a considerable chunk of every day thinking about theological/spiritual issues and doesn’t need or want your guidance in such an intimate choice. Make up your mind: are you a devout follower of an ancient religion or are you a glorified Amway salesman? If you are the former, you will accept me for who I am. If not, I don’t want any.



I love my notion of Jesus. I love to imagine a modern-day Jesus preaching gay marriage, universal health care, love, sex, beauty, art, passion, socialism and whatever else came to his head. But the thing I love most about this guy, the one in my imagination, is that he’s not going to die if I don’t believe in him because HE’S JESUS NOT FRICKING TINKERBELL. Plus he’s already dead.

Maybe twice.

Maybe not, who knows.

Jesus believes in me just as much as I believe in him because to do otherwise would rob his followers of personal responsibility and independent thought. Finally, this modern-day Jesus would not attract some of the people that worship the old Jesus (like Pat Robertson, lots o’ Republicans and any other douche bags who go around hate-mongering in his name) but he would attract generous, talented, hard-working people…like you Christian people I love and respect.

I close with a friend of mine who expresses these ideas better than I can. Plus the blog post directly below this one is from another friend, Roy Zimmerman, who has his own interpretation of this argument.

Jesus Incognito
By Alison Luterman
(from The Largest Possible Life)

Don’t tell anyone, but I love Jesus.
I love his big dark Jewish eyes, so full of suffering soul,
like an unemployed poet’s, and his thick sensuous Jewish lips,
and his kinky curly hair, just like mine, uncontrollable despite conditioners,
and the way he always argues with everyone
and will go to hell for love.
He’s just like that Buddhist god Avalokiteshvara, the bodhisattva of compassion,
except his name is easier to pronounce.
When you’re in trouble it’s hard to remember to yell for Avalokiteshvara,
but “Oh Jesus!” arises naturally
every time a crazy driver hot-dogs past me on the freeway.
I know I should say the Shema when I’m about to die,
but will I be able to remember Hebrew at a time like that?
I don’t want to die saying “Oh shit!”
I’d like to leave my body consciously, like a Tibetan lama, sitting in full lotus
with my head turned toward where I’ll reincarnate next.
But let’s be realistic: I probably couldn’t meditate enough to become enlightened
in the however-many years I have left.
Jesus seems easier. All you have to do is love everyone.
Well, seems is the key word here.
Sometimes the more you try
to love people, the more you hate them.
Maybe it would be better to try
not to love people, and then watch the love
force its way out of you like grass through cement.
Anything is better than organized religion.
I don’t like the singing in churches — all those hymns in major keys.
I don’t think religion should sound so triumphant.
It should be humble and aware of the basic incurable pathos of the human condition,
and in a minor key and sung in a mysterious ancient language, like Sanskrit or Hebrew.
Is it OK for me to love Jesus but not be Christian?
I could try to open my heart and give away all my possessions.
It’s not that different from being Buddhist, after all, except for a history
of witch burnings, the Inquisition, the subjugation,
rape, and pillage of indigenous peoples all over the world,
not to mention twenty centuries of vicious anti-Semitism. That’s a lot to overlook
to get back to a baby born among animals to a Jewish mother, Miryam.
And what about that other Mary, the sexy one? Jesus, I don’t believe you died a virgin.
I think you needed to taste everything human, to inhabit the whole mess:
blood, shit, flies, regret, envy, why-me.
I owe you and all the other bodhisattvas and sages
and newborn babies a debt of thanks
for agreeing to come back and marry yourselves
to our painful predicament again and again —
and I do thank you, bowing to the infinite directions.