Carlamuses

Maclen Muses: My Eulogy To Carla Zilber-Smith

2010-06-10T12:58:00.000-07:00

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 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.

_____________________

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

2010-06-10T10:20:00.000-07:00

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

2010-06-01T12:31:00.000-07:00

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”

2010-05-12T15:19:00.000-07:00

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...

2010-05-01T14:06:00.000-07:00

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

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?

"Flat Carlita" and Kris DO Peru!

2010-04-21T13:03:00.000-07:00

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

2010-04-17T14:49:00.000-07:00

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

2010-04-13T12:14:00.001-07:00

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.

A song for Carla from a student, admirer and friend

2010-04-12T18:27:00.000-07:00

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

Still time to buy calendars

2010-04-05T22:07:00.000-07:00

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.

Worth a Listen - Tony Judt on Fresh Air with Terry Gross

2010-03-29T14:48:00.000-07:00

http://www.npr.org/templates/story/story.php?storyId=125231223

Maclen Muses – Explaining The Health Reform Bill

2010-03-23T22:10:00.000-07:00

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.

Reminder

2010-03-21T19:42:00.000-07:00

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.

What This Night Is Like

2010-03-15T19:54:00.000-07:00

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

2010-03-15T19:38:00.000-07:00

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.

Happy Birthday Kaila

2010-03-13T21:40:00.000-08:00

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)

2010-03-13T21:39:00.001-08:00

News Flash: There are literally thousands of religions

2010-03-03T20:15:00.003-08:00

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.

2010-03-03T20:15:00.001-08:00

Health Status Update

2010-03-01T10:56:00.001-08:00

Valentine's Day, You're Going Down...and not in the good way

2010-02-13T09:59:00.000-08:00

On the morning of Thursday, February 14, 1929, St. Valentine's Day, 7 members of Bugs Moran's Gang, were lined up against the rear inside wall of a garage on Chicago's North Side and riddled with machine gun bullets until they looked like human colanders. The hit was executed by members of Al Capone's gang and was called The St. Valentine's Massacre.

Every February 14th, a march occurs in my hometown of Vancouver, British Columbia to protest the large number of women who have been murdered or gone missing in that city.

Valentine's Day is ruefully mentioned by Ophelia in Shakespeare's play, Hamlet, when she says:
To-morrow is Saint Valentine's day,
All in the morning betime,
And I a maid at your window,
To be your Valentine.

And we all know how well that relationship worked out.

It gets worse.

I grew up in a time before schools mandated that every student receive a Valentine or else no students were to receive one. In other words, the little construction paper envelope (or mailbox) taped to my desk and decorated with scraps of wool and bits of glitter affixed with Elmer's glue (which, by the way, is the tastiest of all the glues) was a little thinner than the envelopes overflowing with gushing homemade lace doily trimmed hearts, chocolates and those heart-shaped cookies with the pink icing and sprinkles. I learned pretty early that some people got lots of Valentines and me not so many... and that this pattern would repeat itself in various aspects of my life over and over and over again until I got a blog. Thus began my strong dislike for Valentine's Day.

But it's not the years of disappointment that irk me, it's the lack of imagination. It seems somehow cold to have one day a year be mandated as the day on which to be romantic. I hate the uniformity of it. I hated getting the same stupid shit year after year when it meant nothing to me. It made me feel like the person giving me the Valentine knew nothing about me, like they were looking at me, but couldn't really see me.

My house is filled with flowers. I fucking love flowers. My favorite is the Gerber Daisy. It's a brilliant color and the bloom is so big and heavy that it tips over like somebody whose brain is so big their body can't support their head. It's the Stephen Hawking of flowers. I also love the brilliant oranges and yellows of the Gerber Daisy and how, after one or two days, they wilt and sag and you need to cut the stem off and turn them into "floaters." I have special crystal bowls that are only used to float flower heads. People buy me flowers all the time and since I started hospice, my house looks like a hippie funeral home. I mention all this so that there's no mistake. I love flowers. I have always hated it though when the men in my life didn't give me shit all year round, and then brought me a dozen red roses on Valentine's Day. It's so trite and boring. I did, however, once date a guy who used to show up at every date with a single flower. Sometimes, a white rose, sometimes a red one, and he actually had the good sense to ask me what flowers were my favorites. I remember one date in which he said, "Whoops. I have to run back to the car. I forgot your flower" as though it were the price of admission to dateland with Carla. I really appreciated that about him.

Let's talk chocolate. Valentine's Day is the one day of the year that people think you want to eat really shitty chocolates instead of the great bittersweet free trade 85% Dark chocolate that you can get all year round. All of a sudden, just because it's February 14th, you get these shitty chocolates that splooge caramel cum into your mouth when you bite them, completely masking the taste of the chocolate despite your best attempt to try to find the one or two fucking pieces with nuts in the middle. I have to tear each chocolate in half searching for the one or two edible ones and leaving a countertop that looks like a battlefield after shock and awe warfare between the cherries and the nougats. And I'm supposed to be excited about this because these cardboard flavored confections came in a box shaped like a heart? Hello! That's not even the shape of a heart. This is the shape of heart:

And while we're at it, here's the Oxford English Dictionary definition:

heart: noun 1 a hollow muscular organ that pumps the blood through the circulatory system by rhythmic contraction and dilation. 2 the central, innermost, or vital part: the heart of the city. 3 a person’s feeling of or capacity for love or compassion. 4 mood or feeling: a change of heart. 5 courage or enthusiasm. 6 a symbolic representation of a heart with two equal curves meeting at a point at the bottom and a cusp at the top. 7 (hearts) one of the four suits in a pack of playing cards, denoted by a red symbol of a heart.

You will note that it is not 'til the 6th (2nd to last) definition that the shape people refer to as heart shaped is even mentioned. And that's from the Oxford English dictionary bitches.

Now, if someone were to give me a box of chocolates shaped like this:
I would sleep with them right then and there. No questions asked. You see, it's that kind thinking outside the heart-shaped box that turns me on.

And what about the history of Valentine's Day besides the murders and massacres I've already mentioned?

There were at least three martyrs named Valentine, so no one knows exactly which one St. Valentine's Day is named for, but it's widely agreed that the holiday was not connected to romantic love until the time of Geoffrey Chaucer. As much as Valentine's Day wrecked my school years, Chaucer fucked them up even harder with The (fucking) Canterbury Tales. I honestly felt like we were forced to read The Canterbury Tales as punishment because our English teacher secretly hated us. The book is impossible to understand in its irritating old English. For example, here is some Chaucer:

For this was on seynt Volantynys day Whan euery bryd comyth there to chese his make.

Do you have any idea what the hell that means? Me neither. Something about birds making cheese on Valentine's Day, which is utterly illogical since birds, to my knowledge, do not make cheese. If this is a clever allusion to birdshit, I'm missing it completely.

One popular theory is that Valentine's Day was named after a priest name Valentine during the rein of Roman Emperor Claudius II. Claudius had an edict preventing men from marrying. Sound familiar? Only in this case, they were prevented from marrying women since Claudius thought single men made better soldiers. Take that, Don't Ask Don't Tell.

Anyhow, Valentine secretly married men to their sweethearts in direct defiance of the Emperor. It sounds really romantic, but if you've been married, you might see things a little differently. If I were Claudius, I would make an army of men and women who'd been married to each other a long time since the front line would feel like a nice break from all the fighting.

Based on all the sordid tales I have shared with you, I am suggesting a mass international postponement of Valentine's Day in which each individual agrees to reschedule it to a day on which they feel romantic toward their partner. We can replace Valentine's Day with Have-an-Original-Thought Day. As for romantic day, pick a day or days and give your partner something they would actually like--like sex or shoes or, if they insist, a dozen red roses and See's Candies in a box shaped like two equal curves meeting at a point at the bottom and a cusp at the top.

Things I'm Missing Tonight

2010-02-11T18:05:00.000-08:00

1. Being able to mime the rapid one handed jerking off motion that indicates to a person that you somehow disapprove of what they are saying
2. Being able to put my hand flat in front of me for an ironic high five
3. Rolling over
4. Owning the destiny of my own chin hairs rather than leave my fate to caregivers too young to know the pain of lady whiskers
5. Sex
6. A TV series that I'm obsessed with that I haven't already watched
7. A nice non- thickened Chardonnay
8. Holding a warm cup of coffee or tea with both hands and bringing it up to my cheek while I read in the morning all alone
9. Keeping ass wiping and suppository inserting to myself rather than having to share my shit with the entire world
10. Putting my arms around someone...anyone... and giving them a big strong hug

It's depressing as fuck because it's true.

2010-02-04T17:34:00.001-08:00

There are a lot of ways to suffer on this planet. Haiti, cancer, health care, ALS. As long as there are humans in the world, there will be suffering. However, if you’re inclined to support a cause and you haven’t picked one yet, this blog is intended to help you understand what it’s like to be trapped in a body that has ALS.

It begins innocently enough. First, a strange tremor, then, an unaccountably violent fall. A shoulder that won’t heal, then a hand. The kind of panic that you feel in those early months is as palpable as the panic you will later feel when you have lost control of everything. You are told you have ALS. The average person lives 2-5 years with the disease. But that’s the easy part.

When you have ALS, you begin your post-graduate study in the discipline of losing things. You lose muscle in your hands and ankles so you drop things and trip a lot. It’s almost comical. Pretty soon, you lose the ability to button a button, or to cut something with a pair of scissors and then, to pick up a fork, spoon or pen. Your typing devolves until you peck the words one letter at a time. Then you get someone to type for you. This goes well, until eventually, no one can understand you so they don’t know what to type. You lose muscles in your hands and ankles. You have to wear braces and sensible shoes. It doesn’t seem like that big of a deal, but now, you fall all the time. You break bones. They don’t heal. You begin with a cane and then your friend paints a walker leopard-skin, but before you can make friends with the walker, you fall backwards twice onto the back of your head. Now you’re in a wheelchair full-time.

It’s okay though. Your friend reminds you that now that you can’t lift your hands over your head to put on your sports bra, you can go back to the lacey sexy ones that hook in the back that you love. You threw all your sexy bras out when you couldn’t hook them yourself and so you get to buy a bunch of new ones. Mostly red. When you lament being stuck in a wheelchair, you friend reminds you that you can un-retire your sexy Fuck Me pumps. You give away the sensible shoes. You teach people how to do your hair and make-up. You buy orthotic devices so you can feed yourself. You live a normal life, but you happen to be in a wheelchair.

You lose sleep. At first, your problems are self-inflicted. You lie awake, wondering about death, loss and when and how it will all happen. Later, you lose sleep because your blanket falls off you and you aren’t strong enough to lift it back up or you swallow too much air with your breathing machine and get nauseous and burpy. Or maybe you accidentally roll on your back and you can’t roll back to your side. It’s too hard to breathe when you’re lying on your back.

You’re tired a lot. This seems like the cruelest loss of all. Each nap represents hours that can’t be returned. Hours that you’re running out of. There’s too much to say and too much to do, yet you feel like someone has placed a pile of bricks on your chest. You try to read a story aloud to your little niece and nephew and have to give up halfway through the picture book. You go out for lunch and you feel like you spent the day at Six Flags in the blazing sun. You can summon up enough air to be loud enough to be heard or you can articulate clearly, but you can’t do both at the same time.

You get tired eating. Chewing is an effort and swallowing has to be done with full and complete attention on the task. Choking might kill you. You eat fattening and irresistible food because you have decided you will not get a feeding tube, so you want to keep up your caloric intake at all costs. Sometimes, you choke on saliva. You breathe so much of it down your esophagus that you gag and throw up the saliva. Then, you find a great medication do deal with the saliva, but it dries you out so much that you have cracks in the corners of your mouth that make it painful to smile or to open wide. If you’re too dry, it’s hard to talk. If you have too much saliva, it’s hard to talk. If you’re tired, it’s hard to talk. It gets to a point where all you want to do is get lost in stories or music or poetry.

You start getting pressure sores. You cramp up painfully. Your legs tremor out of control. It’s the leg tremors that wake you up early in the morning. Your legs shake so much it’s hard for people to get you out of bed in the morning and onto the toilet because they have no stable pivot point. Your feet think they belong to Donald O’Connor and your legs are identical to Ray Bolger’s in The Wizard of Oz.

You are 100% dependent on other people. You begin needing a helper first thing in the morning for dressing and showers and last thing in the evening for the reverse. Then you need someone to cook for you, to do your make-up, and pretty soon you can’t cook or serve food. When you can no longer use the toilet by yourself or bring your hand to your mouth to eat or lift a glass of water to drink you need full-time care. This is not only challenging to your privacy, but it’s impossible to afford on a long-term basis. With caregiver bills and other related expenses in the 12,000-15,000 a month area you face the sad fact that there is an up-side to the fact that you are dying, which is that you can’t really afford to live much longer anyway. You are never alone except when you are in bed and a feeling of dread comes over you when you wonder what will happen if you get trapped under the covers and can’t reach the bell for help. Even if someone was interested in a romantic relationship with you, you would never be alone to have one anyway.

Your life is 180 degrees away from where you thought it would be at this point. Everything that you thought you couldn’t live without, you have had to let go of. Everything you will lose in the future will take you further and further away from the larger world. You feel like you are on a snowdrift riding a brisk current away from the mainland.

You make fledgling efforts to communicate. You try to stay sassy on Facebook. You laugh a lot. You say “Goodbye” to people from out of town and you don’t know if you are saying “Goodbye” or “Goodbye.” You do this with your son and it is almost but not quite unbearable.

You are being dismantled piece by piece like a newspaper chain. You watch in slow motion as everything is lost. You play and you replay the videos and recordings of the old you and you recognize her in a very full way that you don’t recognize in recent videos, which makes you think, “Who is that woman with such jerky, awkward gestures? And what is she saying? I can’t understand the way she slurs her words. Oh, my bad - it’s me.”

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

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

How's this for a book jacket?

2010-02-01T09:51:00.001-08:00

If you know any literary agents or publishers show them this cover and then defy them to not want to make the blog into a book.

Things to Do

2010-01-29T17:14:00.000-08:00

If you feel like you don't want to live one more day, a good thing to do is write down every moment that you don't feel that way. Every moment that feels like there's no place else you want to be, but right here. Somehow, it's grounding to have a list. Now I can't write anything down anymore, but I have an excellent memory and people who will write or type for me. So, here's a brief list:

Last night, I was reading an eBook. Wendy came up with the idea of trying to Barnes and Noble's eReader and Louel installed it for me and Bingo! I can finally read again without getting frustrated with malfunctioning technology or fingers. It feels great to be able to get lost in a story again. At a certain point during the evening, Mayra told me she wanted to show me something. She wrapped me up in a coat and took me outside where I tilted the wheelchair back to see the full moon. The two of us just stared at the moon without talking and I thought, "Here's a moment for the list."

My niece and nephew were visiting and I'e gotten to the point where not only can I not play with them, but I can't read a whole book without getting winded. Jason had to take over and at a certain point, Annabel whispered to her mom, "Can you start at the beginning? Because we can't understand Aunty Carla." I was stunned at the generosity of these sweet little souls, who were too kind to just tell me flat-out, "Hey dude. We can't understand you." They just feigned interest in the book and dutifully turned the pages. Finally we came up with a game in which I would raise my wheelchair to its full height (which makes me almost my former glorious 5'8") while the two kids stood on either side of the wheelchair fiercely waving the feathers that I'd given them, which had come from my parrot, Ronald. They waved the feathers up and down, as though they were efforting enough to actually lift my 250-pound chair. It was a delicious moment.

My old band came over this afternoon and played music for me. Imagine having three world-class musicians come and serenade you. In between, we laughed and joked as we always do. And then David, the drummer, brought out a chart and he sang "I'm an Old Cowhand." I could barely keep myself from bursting into tears of joy and almost did when Jon Evans joined in on harmony. I can't explain to you how happy it made me to be sitting inside the music again, even if I couldn't participate.

I find that the length of time between list-worthy moments is expanding. It's like I came into the whole ALS thing thinking that it was going to be all shits and giggles when, in fact, there are very few shits--and not very pleasant ones at that--and the giggles almost do me in. I think that the harder it gets to make these lists, the more important it is to make them. The harder it is to get out of bed, to get dressed, to face people, the more important it is to do it.

My son had a rough week and Kathy flew down to San Diego to be with him. I had a rough time on Thursday and my core group of friend-helpers--let's just call them, frielpers... or maybe friere-givers or any other name you can come up with--all showed up throughout the course of the day, some for a half-hour, some for 5 minutes, some bringing food, or a little dog, and some just to give me a hug, Other friends keep in touch by e-mail or phone and I feel that the willingness of everyone in my life--well, not everyone--but the willingness of most people in my life to take a little bit of the weight from me makes it possible for me to get up and re-commit to living for another day.

I watched and listened as my musicians played and I watched as Annabel and Atticus created imaginary worlds with "bad feet" who were the nemesis of the wooden train with which they were playing and "good feet" that would come to the rescue. I looked at the chest of drawers in my caregiver room and saw that the crazy bitches had all given themselves spirit animals to identify their belongings rather than just writing their names down. Jenny didn't make one quick enough so Alexa drew a picture of a goldfish for her with the note, "You snooze, you lose. Now your spirit animal is a sad goldfish in a bowl." I mean, who has caregivers who can come up with that kind of crazy shit? Who has caregivers that are fucking firedancers for God's sake? Who has caregivers that bring gifts, both legal and otherwise, to their employer's house on a regular basis? I watch all this in wonder. I get to be in the center of all this love and creativity.

It's so hard to reconcile the abundance in my life with the equally abundant loss. It's so hard to keep going and yet impossible to imagine missing all this beauty, all these miracles, I am starting to lose something that may be the hardest loss yet. I'm starting to lose the ability to see ALS as a blessing, which has taught me so much and brought me so much. If I lose that ability, I don't know what I'll do. I wish I believed in ghosts because if I were a ghost, I would haunt all of you in a friendly Casper sort of way. I mean, I have enough unresolved issues that are complicated enough that Haley Joel Osmond couldn't figure it out and set me free from my ghost-ness. Fuck you, Bruce Willis. What do you know about suffering? If I were a ghost, I could just stay here forever and sit behind you when you played cards, whispering, "Do you really want to give up that Jack?" or stand next to you at an audition and tell you, "You've as good as gotten this gig already. You're totally gonna nail this." Or I would wrap my arms around you like my sister-in-love did on her visit and whisper, "Oh baby, oh baby, oh baby" until you felt better.

But I don't believe in ghosts or Heaven and mercifully, I don't believe in Hell either, since it would be utterly redundant. I believe in right now. And I need everyone's help to remind me of what needs to go on that list every week.

Channel 7 piece

2010-01-25T19:41:00.000-08:00

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Highs and Lows

2010-01-19T17:46:00.000-08:00

Note: This blog was written and later edited under the influence of drugs. Not necessarily Amy Winehouse level drugs, but enough. If it really is hard to follow, let me know and I'll be scared straight.

In the cartoon strip, Peanuts, Lucy Van Pelt was forever offering to hold the football for Charlie Brown to kick. Each time he would take a run at the old pigskin, Lucy would pull the ball out from under him just before his foot made contact and he would land on his back. Usually, he would say something along the lines of "Good Grief!" This is how I feel about ALS. I'm Charlie Brown forever convincing myself that this time, things are going to go a little easier and every time I get into that state of optimism, Lucy van ALS pulls the fucking football out from under me. Once again, I'm on my back looking up at the sky but at least I get to see the stars.

In my old line of work, the performing arts, conventional wisdom was that in order to make it, you had to have natural talent, an indestructible work ethic, the ability never to give up, and of course, good luck. I did not have the second two and if you'll forgive my immodesty, that is why I'm not famous. Along those same lines, in order to deal with ALS, you have to be born with a talent to turn shit into shit-ade as well as an indomitable will to not fall to pieces just because your body and people you love are falling to pieces around you. It's not that I have this gift to be positive and it's not that I wake up every morning and decide that I will be positive--Its both.

Every week, I hear about another person who has ALS or cancer or who just lost a parent or whose kid is going through one of those nail-biting times that parents pray their kids get through. Every week, I meet someone whose loved one has lost a job, who has a serious medical problem and no health insurance. I'm serious. I meet more people with problems than Joe Biden did on the campaign trail. So many people are dealing with unbelievable challenges. How do we place them in triage order in our minds?

The truth is, I'm blessed with a talent for seeing the best I can in the worst situations and I have the discipline to place--nay, to force-- myself into a place of gratitude probably 5 or 6 days out of 7. That makes me better off than most people... except for this ALS thing that I mentioned in the beginning.

I got out of the hospital with this new lease on life. What that actually means is that after I got out of the hospital, all the great hospice drugs made me feel much better and oddly detached from how potentially fucked up it is to be in hospice in the first place. Avatar on morphine? Come on, you know you want to try it. Nevertheless, there I was, happy as a clam, figuring out the perfect valium/weed/morphine cocktails.

Then this weekend, I got really sick (OK super constipated, happy now?) while Mac was visiting and it was one of those inescapable times when one thinks, "Fuck. I'm not just faking this. I really am dying." It made me so angry to feel so bad while Mac was here. Then I went into a bit of a tailspin emotionally. It's hard to spend time with your kid thinking, "If it could just be like this all the time, I would be okay with it." And then feeling sick and thinking, "Why can't I just hurry up and die already?" It's a curious paradox to desperately want to stay alive and to be here and to share everything this glorious globe has to offer and yet, to feel like it would be such a relief to die.

I know a lot of people with ALS who have gone through so many more physical challenges and indignities than I have, and yet, they are still here, still actively engaged in the world, and if not in the world, at least in Facebook or Farmville. Compared to them, I am a great big pussy.

Someone was wondering aloud to me recently, searching for the metaphor for ALS. Of course there are so many, but among them is a weird and haphazard way we all lose function of different parts of our selves at different times and how we could simultaneously see them coming in super slow-mo and they seem to hit us out of the blue. That metaphor seems to be disequilibrium. Nothing is exactly one thing or another. Not the functioning of your body, not your state of mind, and not your proximity to this existence or any afterlife existence. It's all disequilibrium.

A long time ago, I performed a piece in which I read the book, "The Runaway Bunny" to my son. If you remember the book, it's one of those books like "I Love You Forever" that makes you cry and makes you wonder if crying at a slightly creepy book makes you a bad parent. I know they're great books, but they're also kind of creepy. "The Runaway Bunny" keeps telling his mom all the places that he'll run away and hide from her. She tells him if he hides behind a tree, she'll turn into a tree, etc. The kind of mom that you spend the rest of your life talking to your therapist about.

But I digress.

In the piece I performed that involved "The Runaway Bunny", I told my son who was actually a plastic doll swaddled in a baby blanket, "the day is coming when my kisses won't be enough to ease your pain. You will know pain and I will be powerless to protect you." I had no idea at that time how profoundly I would one day experience those words. I see my son and although he's tall and handsome and much smarter than me, I also see a little boy. I can't help it. And there's this urge to pull him onto my lap and to kiss his cheeks too hard and too many times and whisper into his ear that everything is gonna be alright. However, it's not. And I couldn't pull him on to me if I tried. And he would look ridiculous on my lap. So I am forced to be in that situation every parent finds themself in to some degree or another: That situation where you realize that you can do absolutely nothing to prevent your child from experiencing heartache.

This would probably not be easier if there were other mitigating circumstances, even though in my imagination, it always is. But the reality is if I had a supportive co-parent, I wouldn't think. "Well, I'm dying from this shitty disease, but it's okay because I have this supportive co-parent." What I'm about to say is so awesomely true I'm going to put it in quotes and credit myself because it's that good:

"Life can never get better than it is right now, but it could get a fuck of a lot worse."
-Carla Zilbersmith, January 2010

...which reminds me, for some reason; Mac was thinking of more effective tactical publicity strategies for Al Quaeda and it occurred to me that Allah would have a lot more martyrs if he just didn't offer 73 virgins to his martyrs. What about a combination? Maybe a couple of virgins, several cougars, some stone-cold freaks, bi-curious people, and a few of the S&M folk? Now if I'm a traditional martyr, I gotta figure, I still have quite a number of virgins coming to me (get it? "coming"?) and if I don't chose to partake in the cougars (because I'm stupid), I don't have to. On the other hand, if I'm Allah, I broaden my suicide bomber base to include people of all kinds of sexual proclivities. (I'm not sure why I'm writing this except for I live in hope of offending a wealthy extremist Muslim who will finally put a hit out on me.) It is something that I would look into if I were a terrorist though.

So, Saturday I was so sick that I spent almost the whole day on the toilet and the rest of the day sleeping because I was so exhausted. To say that I have zero privacy is to understate my current situation and I was prodded and poked in a way that none of you would like. Trust me on that. I was in such pain that I actually moaned out loud, which I didn't do in 36 hours of labor with Mac. And at one point, moaning and crying and saying out loud how much I hate my fucking life and how nobody knows how hard it is to be me, I turned into my own stern, internalized parent and said caustically to myself, "You really think you're worse off than someone in Port Au Prince?" and I couldn't help but laugh at how fucked up I am that even in extreme pain, I'm trying to figure out where my suffering is in the food chain of despair. I think I'm pretty high up on the food chain. I'm also high... up here on the food chain which I guess brings me a notch down on the food chain since some people can't even afford good meds. But anyway as I said, I'm pretty hight up there. I can't lift a blanket over me in the middle of the night, I get winded trying to roll over, I'm tired most of the time, I go back and forth between dry cracking mouth with sores and drooling and I go back and forth between constipation and diarrhea which is annoying when you can get on the toilet yourself. Imagine how annoying it is when it involves one or two transfers depending on if I'm in the bed or the wheelchair. Lots and lots of things in my life suck. However, my dad has relocated to take care of me, one call and my friends arrive en masse to help me, I genuinely enjoy my days with caregivers, friends and bird. On my birthday my friends snuck in and decorated the living area of my house with tons of butterflies made out of feathers. I eat my breakfast in an imaginary butterfly sanctuary. I have a really great boom box in my room that lets me fall asleep to the best music in the world. I have everything material I can possibly need and I always have. I mean, I can't imagine one Haitian dude on that whole island desperately searching for a door jam in his already ramshackle shack and saying in a shaky voice, "Well, at least I don't have ALS." There is always someone worse off than you which for some reason reminds me of the time I got skunked and I went to the grocery store to buy tomato juice and a homeless guy to whom I frequently contributed was in line next to me and he looked at me and said, "Damn, you stink."

The hospice chaplain visited the other day and left me by reciting a poem by Raymond Carver:

LATE FRAGMENT
And did you get what
you wanted from this life, even so?
I did.
And what did you want?
To call myself beloved, to feel myself
beloved on the earth.

So I think, if you don't mind, I'm going to keep taking a run at that football because one of these days, I'm bound to kick it... no pun intended.

Interesting article by a brilliant man

2010-01-09T09:54:00.000-08:00

http://www.guardian.co.uk/theguardian/2010/jan/09/tony-judt-motor-neurone-disease

Like our blogs are holding hands

2010-01-06T21:40:00.000-08:00

I read about Jason's New Year’s resolution on his blog. He resolved "... to turn every moment of my life into a song of praise." He closed the blog with this quote from Hafiz which I'd like to steal and just lie to people and say I wrote it:
“It is all just a love contest. And I never lose.”

On December 26 I marked the 2nd anniversary of my diagnosis of ALS. The night before the diagnosis Mac, my dad and I had gone to my favorite Burmese restaurant in San Francisco. My Dad opened his fortune cookie that night and read out to us the words "You will have very good luck in the near future." He carefully put the fortune into his wallet and said "I'm going to hang onto this one". The following morning Edith, my Dad and I sat in a room while a neurologist told me I had this fatal and incurable disease. I know my Dad said things after the doctor left us alone and I imagine one of them was that he loved me, however the first thing that I remember him saying is " I'm throwing away that fucking fortune."

Call me crazy but that's the restaurant I wanted to go back to on this weird anniversary. So there we were again, Mac regailing us with more information on the health care plan than I could understand in a normal-length lifetime while my dad fed me.

Afterwards, my Dad dropped Mac and me off near Union Square where we braved the rain and the outrageous herd of humanity out looking for a good bargain. At one point we got separated in Macy's. Mac had my cell phone as well as his own. I was the proverbial lost kid. A gentleman helped me out by calling Mac and telling him where to find me and I was really glad for cell phones because it would have been really humiliating to have some loud speaker say "We have a red-headed woman in a wheelchair at the customer service desk. She's wearing a black coat and is looking for her son. If you have a lost parent, please come to customer service to claim her." Plus, if someone gave me a fucking lollipop I wouldn't be able to hold it.

So there we are beating our way through the throngs and the rain has soaked me right through and I can't think of a more opposite anniversary than last year with all my friends in a circle at the beach holding candles. But there I was in the BART with my favorite person on the planet and we're looking through the car and there is this man with his two kids and they are getting on his nerves, I can tell. He's answering them but he's not listening at all. He wants them to shut up. And then there is this couple not speaking to each other staring straight ahead kind of dull-eyed. A young guy is listening to some music and someone else is texting and I say to Mac "look at that guy. He doesn't even know what he has to lose, yet he's one thin hair away from losing it all. Or one moment away from falling in love with his kids all over again. None of these people know that they are balancing on the head of a pin and this might be one of their last best moments." Mac nodded either in agreement or to stop me from lecturing and asked if I needed more morphine, but it was an amazing moment. Soaking wet after an irritating day which marked a huge event in my life and yet.....

being with Mac that day I felt so alive and so real and so true and so lucky that enough bad things have happened to me that I know what I have. I know that a boring BART ride at the end of a crazy day can be miraculous and wonderful.

Sometimes when I read my brother's blog I get the same feeling that I got on that train. It's this feeling that awe and wonder are all around us waiting patiently for us to look up from what we are doing and say "Oh look -- you're here. I didn't see you come in."

Hafiz and Jason are right. It really is all a love contest.

And I never lose.

THE BIG FAT GAY COLLAB!

2010-01-03T18:37:00.001-08:00

In case you're not on my email list...

2009-12-23T21:34:00.000-08:00

Dear Friends,

Well, it’s mid-December, and so it’s time for my third annual Holiday Letter. As I write this, I’m laying in bed. My trusty assistant, Louel, is typing for me. In the last year, there have been so many losses. I now do pretty much nothing for myself. Caregivers spoon-feed me, help me on the toilet, get me in and out of bed, dress me, and take care of all manner of Carla-maintenance. Some of these things are more difficult than others to handle, but you would be surprised at which ones are the hardest. Believe it or not, maybe the worst thing of all is not being able to pick my own nose. C’mon, you all do it. You just don’t let anyone see you do it. Or at least that’s what you think. When you’re stopped at an intersection, do you really think that your windshield and side windows are suddenly tinted? I see you with your index finger deep into your nostril up to your middle knuckle digging away. My problem is I can never be alone to do that. And can’t lift my hand high enough to get my finger into my nose. I think this is worse than not being able to walk. Scratch that. I know it is. And speaking of scratching, it sucks not to be able to scratch an itch.

So, here I am, in a wheelchair, unable to do anything other than talk (with a short of breath slur that makes people ask me to repeat myself a lot), think (which I do so well I can’t get to sleep), listen (which I love except when listening to somebody stupid enough to be stupid but not stupid enough to mock), and love (a renewable resource that grows exponentially as my ability to do everything else diminishes). I’m in hospice now and it’s pretty likely that I’m writing my last Holiday Letter. I don’t mean to get morbid, so I’m going to phrase the rest of this letter in groupings of fun facts.

Fun fact:

Losing things is important. All the major religions understand this. The Catholics have Lent, the Jews have Yom Kippur, and the Muslims have Ramadan. Voluntarily losing things or giving things up is a gift you give to yourself. Think about all of the things in your life that serve as some kind of itchy fiberglass insulation between you and your happiness. Imagine setting those things free, depriving them of their importance. Then imagine how liberating it is to be free of that dependence: just like how sweet it is to taste food after your lips have denied it.

I lose things all the time and it has made me a stronger, better, happier person. But none of these things were my choice. Religious ritual demands a conscious sacrifice, not one based on fickle fate. So I have decided to give up something that defines me. It has been the source of my confidence and my self-esteem. It has been the thing, more than all other things, that has distinguished me from the pack. I am giving up my hair, which I will donate to somebody who needs it. It’s the first voluntary sacrifice I have made since I got sick. The other night, I watched “My Sister’s Keeper,” a mediocre film with a central theme, which, while not fully explored or exploited, was worthy of a Greek drama. At a certain point in the film, the young girl who has suffered her whole life from leukemia says, “Just once, I want to look pretty.” And so her mother buys a beautiful red wig, the thickness, color, and curl of which is like my own hair (which, by some miracle, has not yet gone gray). It made me cry. And at that moment, I knew that I had to give somebody my hair.

We need to lose things to know what we have. And I have a strong feeling that when I am a short-haired person, I will be just as strong and just as loved as I was before. Plus, I get the joy of knowing that someone will have gorgeous red hair because of me. Plus, it will be much easier to puke.

Fun fact:

As I get closer to death, I believe that religion is everything and nothing at the same time. Religion has helped people I know kick addiction. It has gotten them through dark days and unbearable losses. It has helped them create some kind of container for the unanswerable questions that whirl around a taunting universe. Religion is also nothing because it doesn’t matter which one you choose. It’s kind of like going to Starbucks. No matter which one you go to, your non-fat mocha machiatto half-caf, half-decaf with extra whip will taste the same. “Oh really?” you ask. “What if it’s at a gas station on I-5 South?” Haha! Trick question. I happen to know that there are no Starbucks between here and Los Angeles along I-5 so my broad generalization about religion stands. In your face, lifers! (That’s what I call you healthy people…) Anyway, back to religion. It is absolutely irrelevant whether you pray to the East, don’t eat shellfish, or hide festively colored eggs in tall grass. Religion and death are both everything and nothing. If I die and discover that Oral Roberts was right all along, then I believe I will still go to Heaven because I’ve done no real harm on this planet and I’ve done a lot of good. If I’m kept out on a technicality, then heaven sucks because hanging out with Oral Roberts would be the ultimate buzz kill. There’s a wonderful quote from Arthur Miller’s play, “The Crucible,” when Elizabeth Proctor is asked if she believes in witches and she says, “I say, if I can live in this world and do only good and be named for a witch, then I say there are no witches in the world.”

Now let’s say the Buddhists are right and my lack of enlightenment causes me to be reincarnated as an ant, which concerns a couple of my loved ones. I’m pretty sure that if I’m an ant carrying a breadcrumb up a hill in a line with several of my ant colleagues, I will not be muttering under my breath, “Fuck. I’m a fucking ant.” That’s the Buddhist loophole. You have no memory of your old life, so who gives a shit? If the Buddhists wanted to encourage better behavior, they would have made us remember past lives so we could alter our behavior accordingly. That’s what you get for forming a religion before the creation of any of the Back to the Future films. Doc Brown and Michael J. Fox seem to understand a hell of a lot more about inter-dimensional behavioral consequences than Buddhists. (And no, I’m not talking about Michael J. Fox’s Parkinson’s. He, like me, is randomly lucky enough to be born Canadian and also like me randomly unlucky with the whole slow-debilitating-miserable-fatal-illness thing.)

Finally, if the Existentialists are right, and the after life is a vast, unremitting void—a black hole if you will—a place that is, by definition, the absence of awareness, then I’m not really going to give a shit, am I? Conclusion: People take death way too seriously. It’s really the transition that’s awkward.

So there are two things already that I don’t fear: Loss and Death. I told you this was going to be fun.

That doesn’t mean that there isn’t a tremendous amount I regret saying goodbye to. Numbers one through one hundred are of course Maclen, Maclen, Maclen. I heard my dear Dad talking to someone about the unnatural order of a child dying before a parent, but what about the unnatural order of a parent dying before their child has grown to be a man or a woman? I’m lucky because Mac is a man and if you read his recent blog post to me you know that he is also a wise man.

Not so fun fact:

I will miss so many events in his life that would have been major memories for me. I learned something, however, by reading his blog post (http://carlamuses.blogspot.com/2009/12/maclen-muses-happy-birthday-mom.html) as well as your blog comments about memories. I realize now that a lot of big events and a lot of major rites of passage happen invisibly. We don’t even know they are happening. A walk along the Embarcadero, a blown out bicycle tire, a knock on the door from an unexpected visitor. These moments are the major events when we open our minds and hearts.

Fun Fact:

When I was younger, I used to think that people who said “I love you” all the time were somehow disingenuous. I thought those words and those feelings were like the good china, meant to stay in the cupboard collecting dust waiting for special occasions. Now, I say “I love you” all the time and I mean it. I never did get good china, but if I had it I would use it at every meal. I remember my friend Moira’s dad testing the mighty Corelle Living Ware against the wall, which later inspired me to throw all of our Corelle plates against a wall with great passion and fervor. OK, so I was drunk at the time, but it was still this momentous thing like throwing the vodka glass into the fireplace or stepping on the wine glasses as the crowd shouts “Mazel Tov!” That’s the way we should tell each other “I love you” because all clichés apply here. Our lives are as frail as the finest china but they need to be lived as though they are as durable as Corelle. (This blog is brought to you by the makers of Corelle.)

Fun fact:

The afterlife is only a concept. The things we value are only things. I look at my world and I look back at my life and it’s not the shows or the CDs or the degrees or even the fabulous shoes that matter. It’s you. And You. And You. And all of the people who have been my teachers, my friends, my accomplices and my family. My friend Kim has often compared me to George Bailey, from “It’s a Wonderful Life,” saying I was the richest girl in town. And isn’t that line why we watch that show year after year. Isn’t that why we wonder at the way we get choked up in the same spot as the crowded living room of friends and family sing Auld Lang Syne? Arundati Roy says that "the secret of the Great Stories is that they have no secrets. The Great Stories are the ones you have heard and want to hear again. The ones you can enter anywhere and inhabit comfortably. They don't deceive you with thrills and trick endings. They don't surprise you with the unforeseen. They are as familiar as the house you live in. Or the smell of your lover's skin. You know how they end yet you listen as though you don't. In the way that you know that one day you will die, you live as though you won't. In the Great Stories you know who lives, who dies, who finds love, who doesn't. And yet you want to know again. That is their mystery and their magic. ..."

We watch Peter Pan because there is a part of us that mourns growing up as we would the death of something pure and we clap louder than our kids when Peter asks “Do you believe in fairies?” There is a part of us that hopes every time that Romeo finds his true love dead, she will suddenly awaken and say “Don’t take that poison you dumb shit, didn’t you read the fucking letter?” You and Maclen have been my great story and until I stop breathing, I will marvel at the good fortune I have had to know so many amazing people and to have given birth to the most amazing guy I have ever met who is not just my son but my friend.

From now on, I will tell the story of how the worst shit storm rained down upon me and how the shit transformed into chocolates and butterflies, great friends and caregivers. I will tell the story weaving in the other great stories. I will tell the story that keeps being told again and again since Lou Gehrig referred to himself as the luckiest man alive of how a very bad thing couldn’t touch a very good life. Ha ha ALS, you suck, I win!

So in the words of Romeo, “Eyes look your last, arms your last embrace” and to paraphrase Frank Capra’s ZuZu, “Do you hear that bell? Teacher says that every time a bell rings, an angel is getting laid in heaven” and I leave you with my favorite line from Peter Pan:

“To die would be an awfully big adventure.”

Thank you all for being so good to me and Mac and happy whatever-the-fuck you celebrate.

Love Carla Bailey-Pan

Ps: Buy the damned calendar! Dying request here!

https://alwayslookingsexy2010.alscommunity.org/GroupSite/tabid/54/albumid/278/view/ViewAlbum/Default.aspx

Maclen Muses: Happy Birthday, Mom

2009-12-14T22:39:00.000-08:00

The following is a special guest post by one Maclen Jacob Zilber. He guessed his mother's password, for the purpose of surprising her with this blog post when she woke up. What a rascal...

How can one take the life of a woman who put 80 years of happiness and 80 years of pain into 46 years, and even attempt to sum it up?

That was how I started a speech about you, Mom, about a year ago to this day. I guess it's 47 years now, eh? I am still a little bit daunted by the notion of summing up your life, nor could I necessarily do it justice, much as I suggested before. At this stage in your life, you have little use for material goods, nor were you ever much of a materialist, which, to coin a phrase, begs the question: 'what do you get for the woman who has everything and nothing?' The answer is that I have the memory of an elephant, and, while I can't "even attempt to sum up" your entire life, I can give an honest try at writing the story of our life, in reverse chronological order.

[Muselings: While you're reading these little snippets, try to think of a memory of you and Carla, or of how Carla affected you, that stands out. If you feel comfortable sharing it, I'm sure it would put a smile on her face to read it in the comments. An additional note is that this post, because it's written primarily for Carla and only secondarily for her readers, there are some parts that the lay reader may not understand.]

____
I remember....

A couple of days before I left for college, we went to The City to see "In The Loop." We both knew at the time that it was possibly the last time that we would ever go somewhere alone, without you requiring any assistance, and, frankly, it was quite scary at the time. We walked along the Embarcadero, for a longer time than was necessary to find the theater. This was partially because it was one of those rare days in San Francisco in which the weather measures up to the city itself, and already-friendly Franciscans walk with a bit more pep in their step, as if a ceiling of fog ordinarily kept them from standing up straight, and in its absence, were relishing the freedom of being outside for the first time. It was also partially because the iphone's GPS was getting us lost, and the theater was not particularly easy to find. We had some conversation while walking, but mostly we just soaked in what was likely the last truly great day that we were going to have together.

We got to the theater after going through a series of confusing elevators that would have been in a Marx brothers movie, if the Marx brothers were around in the age of elevators (If I said that sentence in conversation, you probably would look at me indignantly and say, "The Age of Elevators? Who are you, a Sci-fi writer from the '60s?" I would probably respond, "That joke would have worked a lot better if you had used a specific name, like "Arthur C. Clarke"). On the topic of the Marx brothers, the movie, in many respects, traced its roots all the way to "Duck Soup," the last war satire with the same cocktail of levity and import.

After the movie, we went to a very expensive restaurant. You were in a wheelchair (duh), and I was in a t-shirt and jeans (lack of style sense is a disability too, okay!), and the staff of the restaurant seemed curious about why the hell two people who weren't dressed all that well would dare set foot into their establishment. It must be a special occasion, the waiters seemed to think. Otherwise, how would the riff-raff get in? You explained to them that I was leaving for college, and were amused when they thought that I was your brother.

In fairness, though, I once thought that I was your brother when I saw a picture of a seventeen-year-old Jason Smith and he looked exactly like me. "I don't remember wearing those clothes!" I confusedly remarked. "That's because...you didn't...that picture was taken well over 20 years ago."

The following day was the worst day since the day of the diagnosis. We watched a movie and I cried. We went to a sushi restaurant, and I cried. We'd laugh at a joke, and I'd cry. I knew that there were still going to be more days with you, but I also knew that they were numbered, and that I was now transitioning out of "our life," and into "my life." But while we were at that sushi restaurant, in a lull in which there was no conversation, I looked across the table and felt a smile wash through my face like hot cocoa. I realized, as I sat there and we just smiled, that everything was going to be all right. Everything was going to be fucking terrible, but it was also going to be all right.

When we got home, and it was time for me to leave, I made a joke about buying one of those Calendars with every minor holiday on it, and coming back for the "Festival of Stockholm" (sorry Swedes, it's minor). We hugged, and I left.

____

I remember...

Going to Orlando to see the "Holy Land Experience Theme Park" with you and Jamie. There isn't a whole lot of ground on this that hasn't been covered, but I have to say that my best memories of the trip are not the souvenirs or the amazing video footage, but just sitting around the sports bar watching basketball and exchanging witty banter with you. I think that years from now I will still remember the following scene, though I'm not sure how much good this will do for your reputation:

[Carla, Mac, and Jamie are walking back to their apartment in a themed Disney Resort. Okay, they're not walking back to their apartment, they're trying to find somebody who can unlock the door to their apartment, since the door is locked from the inside. An adorable little boy, about eight years old, is walking by with his dad.]

Father: [unintelligible]
Adorable little boy: And that would cost 200 moneys!
Carla: That kid's a [can't finish, laughing too hard. Catches breath] That kid's an [same thing happens again, can't talk because of laughter]
Mac: That kid's a what?
Carla: That kid's an ihh [laughing] that kids an ihh [keeps laughing]
Jamie: This can't possibly be as funny as you're making it seem
Carla: [several minutes later] That kids an idiot! [laughs hysterically some more]
Jamie and Mac: -Mocking comments you would expect after somebody called a little kid an idiot and laughed uncontrollably for five minute about it-

_______

I remember...

Sitting in our old apartment on Kains street, around October or November of 2008, and having you ask, "you know where I think a great place to go during the winter would be?" I have a fun little eccentricity where, whenever people ask questions that are practically unanswerable, and are functionally intended to get the person who hears the question to ask a question to the questioner, I will guess, rather than asking the intended question. I said, "Sydney?" And you said, "yes, how did you know?" With that, it was decided that we were going to go to Sydney, how could we not?

As for Sydney, I don't think that there would be much to be gained by me talking about the wildlife reserve or the hospital, because you probably have memories of those incidents that are nothing short of Crystal clear. Instead, I'll try to jog a couple of random memories:
- Remember the cruise ship, where they couldn't move the wheelchair to the upper deck, so you, Papa, Lisa, and I got the entire dining hall to ourselves? Remember the ridiculous Australian anecdotes the recorded voice mentioned? Remember the fun we had at its expense?
- Remember watching the movie "21" on pay-per-view? Not a particularly good movie, but I remember it being one of the first normal things that happened on that trip
- Remember the GPS device that spoke in an australian accent, and therefore pronounced "recalculating" as "reCOWLkyulaiting?"
- Remember Lisa Klein's insistence on finding "Spelt in Gleeb," not because she knew that Gleeb had particularly good spelt bread, but because she thought it sounded good?
- Remember our conversation about how, in honor of the phrase "Bringing Coals to Newcastle," we should bring a Nat King Cole album to Newcastle?

________

I remember....

When I directed my first play, "Tape" by Stephen Belber. This was the first major bit of theater that I had done without you being in some way involved. Yet, on the very first rehearsal, something odd happened. I realized that I knew how to direct. I had picked it up by osmosis, from standing next to you for a decade while you taught theater classes and directed plays. It was at this juncture in time that I realized that, even without you being present, you would always, in a way, play a role in my decisions. That your wisdom would always be with me. Because it was a one-act play, you and I doubled as back-to-back stand-up comedy routines to warm up the audience for the show. We laughed at the jokes that nobody laughed at and crossed our arms at the jokes everybody laughed at. One joke, a tedious but memorable one straight out of the tradition of Henry Youngman, will forever stay with the people who attended the show.

"My son will now assist me for my final impersonation. Mac?" you asked, as I came out of the audience and lifted you out of your wheelchair. "Ta-da, my imitation of stand-up comedy."

_________

I remember...

I remember being present for your final concert, and even I wasn't immune from being mesmerized by the effect of the last song. As the last song came to a close, the crowd was silent. Then, as if in a movie, all in the house stood up and broke out into rapturous applause, giving due recognition to the coda of a truly special career in entertainment. I remember thinking at the time, "This would make for a great climactic scene in a documentary." I kid you not.

_________

I remember...

The final showing of our Opus Magnus, "War and Peacemeal," a satire on war that, come to think of it, makes me eat my words about "In The Loop" being the only modern war satire that measures up to "Duck Soup" in import and levity. Yeah, I just compared a silly work we wrote to one of the greatest films in the history of the cinema, what are you going to do about it?

Anyhow, I'm sure that you remember with crystal clarity the ending of the last show. What you probably don't know, however, is that, backstage during the last show, I cried during your original composition, "I Will Find You." I couldn't see you or hear you, but I know that you did too. All of the "it's a Disney-style song" derision I could muster could only last so long against a song written by my own mother about a mother saying goodbye to their kid. I'm sure that, years from now, I will listen to that song on your new CD (which, readers, if you're roped in, can be downloaded for only along with a whole new album of Carla originals, "Love, Death, and Wings," for $9.99 at this address) and still cry from it. That makes it the norm, rather than the exception, among your songs.

________

I remember...

Sitting with you in our small apartment on Kains avenue, along with Sofia Alexander, the three of us seemingly drowning in paper, creating the script to a a wonderful full-length play, "War and Peacemeal." In three days. Back then you could still walk, but it was sort of ill-advised for you to do so, and you often used a scooter to get around during rehearsals. This was really the first creative project in which you and I were equal partners, and I was relishing it. [This will come as a surprise to many of you who watched "War and Peacemeal," but my contributions to the play were most of the soundtrack and the tearjerking bits, while Carla's contributions were the sophomoric jokes and the plot structure. That being said, these contributions intermingled a lot, and she and I still argue to this day over who came up with certain parts of the play.] It was truly a 50-50 enterprise, with neither of us writing an outright majority of the script. It still puts a smile on my face to think of those piles of paper strewn about the floor, the brainstorms and breakthroughs we had, and the wonderful lightbulb feeling when we (okay, if you insist on giving somebody credit, I) stumbled across a way to end a hilarious play with the audience in tears.

__________

I remember...

The first day that "War and Peacemeal" became even an abstract idea on the horizon. Eleven days before you were diagnosed with A.L.S. (Two years ago today, in fact, but who's counting?) I bought you "The Complete Works of Aristophenes." However, either because I was a [politically correct censor] giver, or because, for a Professor Emeritus of Theater, you don't like to read much, I ended up being the first person to crack open the book. I skipped over "Frogs," "Lysistrata," and everything else that might have been made into a play before. Instead, I zeroed in on a piece called "Peace," (ooh, it's a homonym, he's so good!) a play so unknown that our play opened with "Anybody who has read this play before, raise your hand." Most nights, nobody would raise their hand. If somebody did, the actor reading the monologue, I would say, "psh, you're lying. Nobody has read this play since John McCain was in grade school." In the morning, I excitedly presented you with the idea for our play, and we immediately shot ideas back and forth, hashing together some semblance of a plot in no time. With another mother, OR another director, my idea would probably be met with a response along the lines of, "oh, that would be funny. Good idea," and no further action. With you, the idea was allowed to turn into a capstone worthy enough for you to un-retire from directing, just for this last show.

__________

I remember...

The day that you were diagnosed with A.L.S. I had gone over to the house of our friends the Cardalls in the morning, and was bizarrely told that I needed to return at 1 P.M. because my grandfather was leaving town, and I needed to say goodbye to him. I guess you can't expect a group of people who just heard the worst news of their lives to come up with the most plausible excuse.

I remember walking into our apartment, with you sitting on the couch, and a look on your face that l knew meant that something truly horrid had happened. I couldn't think what it could be. Had one of my grandfathers died? You sat me down, and told me.

"I have A.L.S."

I didn't know what that was. See what I mean about why we need more A.L.S. awareness? I went on the next two to three minutes of our conversation as if A.L.S. was something like Chronic Fatigue or Crohn's Disease. Then you said the words that changed everything.

"I may have as many as ten years to live."

It sunk in that you were going to die. There was nobody in the world I was closer to, and I was going to lose you. Probably sooner, rather than later. Even for somebody who had never used the word "mom" in his lie, I had the only reaction that anybody could have in that situation. I threw my arms around you and began to weep uncontrollably, saying "Mommy, mommy."

I know for a fact that you know what you said to me after you calmed down. You told me that you were going to lose control of your limbs, until you were completely paralyzed, and that, while you were still healthy, you wanted to go boogie boarding in Mexico. I suggested, movie buff that I am, that we go to Zihuatanejo. And so it was decided. Just like every other dark place, you managed to blast your way through it so that there was some light.

_________

I remember....

Going to Sayulita, Mexico, because the boogie-boarding waves were bigger than those in Zihuatanejo. Best decision of our lives. This quirky town off of Puerto Vallarta provided the memories of a lifetime, and some day I will scatter your ashes in the city where I had the best vacation of my life.

I'm sure you remember:
- The Sayulita Days festival, one in which not a single "Gringo" outside of the two of us dared to attend. It was like a theme park out of a Steve Buscemi movie. There were rickety roller-coasters that looked like they'd crumble under the weight of two tall tourists. There was a booth, billed as "El Niño Tarantula" in which a little boy stood in a refrigerator box with badly designed spider arms coming out of the box. There was a contest in which you threw beer bottles at other beer bottles, and the prize was a painting of Jesus Christ with a crown of thorns causing him to bleed profusely. You get the idea. You presumed that there was probably some organized crime going on, given the way everybody looked at the two of us so suspiciously, and given the way all of the other tourists avoided the festival.
- The wonderful cuisine. Who would have guessed that a tiny rural town in Mexico would have great italian food, french food, and californian fusion food? I ate sushi for the first time in Sayulita, and now it is a staple of my diet
- Cheeseburgers! The restaurants in Mexico were simply clueless at the idea of ordering a hamburger without cheese. I'd say "Sin Queso, No cheese, no queso," try pantomiming, etc, but, in the end run, like a bad Saturday night live sketch, every hamburger restaurant in town could only make cheeseburgers.
- Our lovable hotel owner saying, "I don't like the chicken fights," and you responding, "Yeah, it's violent." His priceless response, "I prefer the bulls."
- The loud megaphones that played at 6 in the morning that sounded like the type of thing you'd hear from a military junta in a war torn African nation. Instead, it was just people selling fruit.
- The fact that Fox News appears to be the only channel in the English language that gets transmitted down in many parts of Mexico, how weird is that?
- Watching "Mean Girls," and actually liking it.
- Going on the types of waterpark rides that probably would not pass a safety inspection in the United States. Right before they pushed us down the dangerous-enough waterslides, the man who pushed us down on our inner-tubes said "hold on tight," something that you weren't capable of doing. You said afterwards that the thought process went through your head, "well, if this is it, there are worse ways to die."

Ironically, the attempts at boogie-boarding couldn't have failed more miserably, nor could they have succeeded more triumphantly. As you discovered after you got into the water, you could no longer swim. As huge waves, the type of waves for which surfers sought out this tiny village, crashed upon us, you and I began to laugh uncontrollably. It wasn't necessarily at the irony of coming to a town known for its waves when you could no longer swim. Okay, maybe a bit. It wasn't necessarily out of nervous fear, as you could have easily been badly hurt. Okay, maybe a bit. What it was really about was us laughing at the world. The dolphins and the beaches may not have healed you, and they may not have given you a way to beat A.L.S. physically, but they showed us that the world couldn't keep us down. Nobody, not even death, could stop us from enjoying ourselves, from laughing at it all.

And we continue to leave them laughing, don't we?

Happy Birthday, Mom.

Guest Blog by Jeannine Frank

2009-12-14T14:36:00.000-08:00

My friend, Jeannine, is quite brilliant with lyrics.
Here's her birthday tribute to me, which you'll all enjoy.
Hum the Mary Poppins' tune Supercalifragilisticexpialodocious as you read it.

SUPER-CARLA’S-MAGIC-IS-INFECTIOUS-AND-ETERNAL
(if anybody doubts it quickly log on to her journal!)

When celebrating Carla it's so hard to find the phrase
That sums up all the feelings over many years and days
A singer, writer, comic shining bright upon the stage
Before this fuckin' drama threw our world into a rage -- when

Super crappy ALS that awful diagnosis
Burst upon the scene with its unscrupulous prognosis
If we scream out loud enough we’re sure to get ferocious
Couldn’t she have something else – like zits or halitosis?

Was seven or eight years ago a friendship did begin
She called to book an artist at the College of Marin
We stayed in touch occasionally and then there came a day
Her Wedding Singer Blues found a production in LA

And Super Carla’s magic on the stage was so terrific
All the parts she played were universal yet specific
Talented and sassy and incredibly prolific
She could star in Annie, Guys & Dolls or South Pacific

She has a son named Maclen who’s a chip right off the block
My guess is he was in the womb when he began to talk
He cracks her up completely even though it makes her cough
One day he’ll rule the world and we’ll be so much better off

Our Super Carla's magic touches people round the planet
Living every day as though her nerves were made of granite
Blogging all her insights -- we're so grateful she began it
Would that we could grab that ALS and fucking ban it!

So now she is a movie star for all the world to know
She’s also made a Calendar – which should raise lots of dough
She’s just so damn productive that it puts us all to shame
But we are all inspired everytime we hear her name

Yes Super Carla Zilbersmith there’s just nobody like you
I’m forever pissed that fucking ALS could strike you
All the lives you’ve touched are too innumerable to measure
Super Carla Zilbersmith you really are a treasure!

Buy My Calendar Please

2009-12-09T15:28:00.000-08:00

I was in the hospital last week. I went in with completely unrelated symptoms, but was diagnosed once there with walking pneumonia. At the very least, this is an ironic diagnosis for somebody who can't walk. At best, I believe I have an ADA lawsuit on my hands. Rolling pneumonia, fine. Boogie-woogie flu, maybe. But not walking pneumonia.

While I was in the hospital, I learned something distressing about ALS. I know you're probably thinking "What isn't distressing about ALS?" and you'd be right. I discovered how unknown ALS is even to health professionals. Of all the paramedics, firemen, nurses, and nurses' aides I met last week, NONE OF THEM had heard of ALS.

This is a problem.

Now I am hardly the exemplary ALS fundraiser. I'm always coming up with ideas like ALS Barbie or my more recent concept of the Robot Caregiver. The Robot Caregiver would allow people who suffer from ALS to still have precious alone-time while all their needs are met. The robot would be programmed to tune in to distress and would be wired for the internet so it could play amusing youtube videos for you when you are sad. I also have been instrumental in promoting the Ironman Suit for people with ALS. After all, wasn't one of Lou Gehrig's nicknames the "Iron Man"? I think it would be a lot better to have ALS if you had a robot caregiver and a suit that made you fly so you could say to people, "I ay not be able to walk like you, but I can totally fly bitches!" Here's my prototype for a Robot Caregiver:

Nevertheless, as I get more and more fatigued from ALS, I'm thinking more and more about ALS awareness.

It made me think about my son's frequent lament that the reason ALS awareness is so important is not because it's the worst disease and not because people are inherently more worthy of awareness when they have ALS, but because AIDS and cancer have 100% awareness and ALS didn't even hit 10% in a frickin' hospital.

Therefore, I have made it a goal in the months I have left on this planet to get 10,000 people that don't know about ALS to learn about it. That comes to $1 per person in terms of the money I spent on the Always Looking Sexy Calendar.

How is this possible? I'll tell you how. You guys have to get off your butts and order the calendar. You also have to send the link to all of your friends. Even if they just read your e-mail and don't buy the calendar, the way I typically read chain e-mails and break the chain, they will still know something about ALS.

ALS strikes anyone. If you look at our calendar, you'll see people as young as 23 and as old as 70. It does not discriminate by gender or race. Someone in your family could be the next person to get this horrible disease.

Not that I'm complaining, which I totally could, but in the two years I have had ALS, I've lost the ability to walk, to feed myself, to type this e-mail, to sing, to dress myself, and to wipe my own ass. And the party's barely started. My lungs are failing and by mid-afternoon, I'm hard to understand. I deal with the indignities of having someone give me a suppository so that I remain regular (a concern when you have ALS) and I deal with the humorous aspects of the same. For example, one of my caregivers--I won't say who, but it's the same one that put my hand in a cast--stuck the suppository up the wrong hole, which is quite a task, since a baby's head has past through the hole she chose. After the deed was done, she had to root around in my vagina until she found the suppository thus giving me my first lesbian experience. Dear Lesbian friends, tell me its better than that!

I know a lot of people who have suffered far worse from this disease than I have and that will not stop until there is cure. There will not be a cure unless there is money and there will not be money unless people know about ALS.

I'm charging you with the following responsibilities:
a) Buy a calendar. Or 10.
b) Send this e-mail to all of your friends immediately. Once January is done, no one will be buying calendars, so it must be done swiftly.
c) Tell people bout ALS.
d) If you are local, come by my house, pick up 0 to 20 calendars and find a local coffee shop, used bookstore, or hair salon at which you could sell the calendars on consignment. I have 200 calendars left that I want to get rid of before Christmas.
e) Display your calendar prominently.

Here are some FAQ's:
1. My family are a bunch of tight-asses. Is there something in the calendar that will offend them?
Absolutely. Here's what you do: You color in the panties of Miss January and you change Mr. July's quote from, "Yes, my cock still works." to "Yes, my glock still works." with a little deft penmanship. Glock still makes him seem like a bad-ass and it could be a euphemism for cock since they both shoot. However, your NRA-lovin' Republican grandpa won't be bummed out by glock.

2. What if I want to buy a bunch of calendars? Do I really need to spend that much money?
Oh hells no. If you buy 10 calendars, you get a discount of 25%. If you buy 100 calendars, I'll discount you by %50. Just contact me directly.

3. I went on the website and it was confusing to see where to buy them.
You need to get in your time machine and set it for 2009 where we have sale purchases that are made on the internet. It's very easy.

4. Will I get into Heaven if I buy over 10 calendars?
Yes. I will keep your cloud warm for you.

So, to recap. E-mail me if you want bulk calendars or if you will agree to find a place to sell them. Otherwise, go to

https://alwayslookingsexy2010.alscommunity.org/GroupSite/tabid/54/albumid/278/view/ViewAlbum/Default.aspx

And if you're in a buying mood, you can log on to

www.cdbaby.com/artist/carlazilbersmith

to buy my latest CD, which is called "Songs About Love, Death, and Wings."

I'm actually still too sick to blog, but this calendar is probably my last big project and I really want to leave the world having accomplished something really cool, so tell a friend about ALS today... and they'll tell someone... and they'll tell someone... and so on and so on. (Any resemblance to 1970's shampoo commercial is purely coincidental.)

Thanksgiving Thoughts

2009-11-25T10:19:00.000-08:00

Looking at a picture of Mac from Friday night's sneak peek and noticing that he can still smile until his eyes twinkle despite everything he has been through.

Having had my Dad three blocks away these past three months.

Knowing that I'll be spending Thanksgiving with a bunch of my caregivers and family. Knowing that is what I want to be doing on Thanksgiving.

Fire dancing.

People.

The Forbes Norris ALS Clinic. Not because they are going to save my ass, because they won't, but because they are all great at their jobs and wonderful, funny and compassionate human beings.

The faculty and staff at The College of Marin who have not forgotten a colleague and continue to help.

The documentary sneak peek at The College of Marin.

Ronald cooing " I lo-ove you - I'm gonna kiiiiilll you" and then counting to 4.

I'm grateful for the students who have made me laugh for 16 years, who show up a dozen years after having a class with me to let me know they haven't forgotten me and for continuing to be in my life. For making me proud.

I'm grateful that one of my students became my caregiver and is traveling back here all the way from New York for Thanksgiving.

My friends. Always my friends. I'm grateful for them when I wake up in the morning and when I go to bed at night because they could have bailed, but instead they have chosen to take on this painful journey. Lots of people have not been able to hack it but many of my girlfriends show up every week. Thinking about ways to help me occupies time when they aren't with me. I don't even want to think about how much money they have spent on me. Its amazing to know that you can send out an email or make a phone call and whatever you need will be taken care of by the end of the day. About a month ago I sent an email to my brother and to several of my close friends saying that I was having a hard time and I didn't know if I could keep going without losing it. It was about 9 or 9:30am. The first one through the door was Edith at around 11. Kathy, Wendy and Kris showed up shortly after. Kaila came by at 12:30. While they were all there my brother called. Let me emphasize I had not asked anyone to call or come over. It's nothing short of miraculous to me to have people just show up.

My friends. I have friends I don't get to see as much because of their work schedules, young kids, etc. I'm grateful for their phone calls and their emails with youtube links and interesting forwards (well not the forwards that make you send them on to ten strong beautiful women you know and not emails of adorable kittens or puppies in the body of the email. I must admit - even if somebody had sent me a chain email saying "Please send this to 10 of your best friends or you will get ALS" I'm pretty sure I wouldn't have forwarded the email...wait a minute, maybe that's what happened.) Anyway, I'm grateful to those friends for showing up in the way that they can.

Pricks I'm not in relationships with. I'm grateful to all the pricks out there who are not currently in a relationship with me. Thank you from the bottom of my heart for not being my prick boyfriend that I should dump but I don't. I'm not grateful to all the really great guys who are not my boyfriend, unless they are somebody else's boyfriend. Awkward!

Psychos who are no longer my caregiver. Thanks for that.

I'm grateful to my new friends who have ALS. Because I hate acronyms, I won't call you my PALS , but I will pal around with you and even get a tattoo with you. Yes, I'm talking to you Gimp Girl.

Muselings.

Music.

I'm grateful that Mac calls me pretty much every day and tells me things I don't understand about politics. I'm grateful for his heavy breathing as he talks on speaker phone while riding his bike across the campus, for the loud music rattling through the cafeteria and distorting his voice and for the interruptions as he orders fettucini or greets roommates, because all of those background noises help me picture what his world looks like now. I am particularly grateful that he is away at school. It would have been great to have him around but its sweeter to know he is thriving and happy and creating a future for himself.

I'm grateful for all the friends and family from out of town who make the time to come and see me. I'm grateful for the extremely magical time with Stephanie who sat through a visit which included me being sick from a medication, exhausted from stress, having the most toxic and volatile parting with a caregiver since James Caan and Kathy Bates in Misery, a sneak peek of the movie where she had to share me with 500 other people and a subsequent day of me being barely able to lift my head from fatigue, nausea and dizziness. The weird part about the visit is that we both had a great time with each other. Not so surprising for me since it's a low bar these days, but for her to have had a good time in those circumstances gives you some idea of what kind of person she is. No, not masochistic, just really good.

I'm grateful for all the young people in my life from Mac and his friends to former students to my unique group of caregivers who run the gamut from artist to dancer to connoisseur of all things weed related to gun toting tattooed sweetie pies.

Unless this Jesus guy is everything he's cracked up to be and his supporters haven't given up praying to him on my behalf then this is my last Thanksgiving. Would you believe that this is the one I'm most grateful for? See that's the trick about gratitude. It doesn't count if you are only grateful on the good days. It's a cumulative thing and it spreads and it grows and it's a fuck of a lot better to be grateful when everything is shitty than to be thinking about how shitty it is.

Everything gets harder, every day more challenging but loving this life and the people it has brought to me paradoxically gets easier and easier. If I had a time machine I would go back to when I was a teenager and I would whisper in my own ear all the things I've learned in my almost two years with ALS and you know what... I probably wouldn't listen to me. Some things you need to learn your own self.

And it's all worth it. And it's a privilege to be here.

Message to god (If that's your name): Yo G! We cool.

More Public Humiliation For Edith

2009-11-20T23:28:00.000-08:00

A little less than one year ago, I performed for the last time. It was November 26, the day before Thanksgiving, and I knew part way through the gig that this would be the last time I performed on a stage. This as you can imagine was the unkindest cut of all. I don’t think anything has been harder, nor will anything be harder until I’m no longer able to talk, which if you know me is something that I do really well. If there were a competitive talking event in the Olympics I would get the judges’ highest scores for quantity of words, inexhaustibility, and a perfect 10 for creativity.

And so as we got closer and closer to Thanksgiving this year I wondered with dread if I could find a place of genuine gratitude. After all, I’ve lost so many things this last year. It gets harder to harder to do simple tasks and leave it to me to be the ALS anomaly with random symptoms like vomiting. You let me down internet. You didn’t mention vomiting as an ALS symptom. Every day it gets a little harder to be cheerful and look at ALS with that hazy, sepia lens they use on TV for flashbacks of happy childhoods and Kodak commercials.

Good new though: this time of year (today to be exact) marks the anniversary of the birth of Edith Muroga Morrow. I would tell you which anniversary but she would kill me. So in the interest of not angering her, let’s just leave it at she’s very old. (That crack is for Edith’s siblings in case they read this. By throwing the first punch I’ve saved her from a much crueler blow.)

Now those of you who are faithful readers of this blog know that next to talking, the most remarkable thing about me is my award-winning collection of friends. Each one is unique. Each one is gifted. Each one has his or her own peculiar quirk or anxiety that makes them not quite perfect so I’m less envious of them than I might otherwise be. Edith is perhaps the least neurotic and quirky of my friends which is a remarkable accomplishment since she grew up with a man who covered his office windows in tin foil.

Edith has an inscrutable look that takes years to figure out. Her doppelganger Kathy has this disapproving eyebrow cock and lurching forward of the forehead with the chin tucked in which would make most men’s scrotum’s recede and which chills the very heart of this poor cripple. Edith’s disapproving look however is far more subtle. It’s more of a complexion change than anything else. In another life she must have been one of those Gary Cooper type cowboys. I imagine her on the plains facing her down her foe, who, searching her face for the “tell,” never sees her hand reach for the Colt 45. Her eyes don’t even follow the poor slob as he drops to the ground. She just blows across the business end of her pistol, twirls it three and one quarter times on her index finger and it lands perfectly in her gold and oyster brocade holster. She doesn’t blink.

But that’s really only one side of her. Inside her calm cool-as-ice demeanor beats one of the warmest hearts this side of the Pecos. Edith is at my house a minimum of once a week. I’ve called her on her cell phone from another county, and said, “I’m at this party and I’ve locked myself in the bathroom because I’m freaking out.” And she has simply said, “ I’ll be right there.” And she’s always right there. She has listened to me complain bitterly and at great lengths about all kinds of things both serious and petty and she seems to have the misfortune of being the one that’s around during at least three quarters of my completely Vesuvian explosions. She is apparently incapable of spewing molten lava herself and tends to explode more like a bottle of seltzer water that someone had in their knapsack--mildly explosive, and a little soggy but nothing that can’t be quickly cleaned up.

I’ve seen Edith deal with things that nobody should ever have to deal with. I remember Kris, Wendy and myself sitting on the floor of Kris’s empty new house. We were supposed to be putting contact paper into the cupboards and unloading boxes and instead we were sobbing in each other’s arms because Edith’s son had been diagnosed with leukemia. I’ve never seen anyone deal with something so horrible with such grace as she did then. In the midst of cleaning stents, watching her baby get spinal taps and chemo, and discovering that if that wasn’t enough, he also had something wrong with his fucking heart, Edith dealt directly and bravely with the situation. She cried when she had to but she still went out for birthday dinners, indulged in retail therapy, and treated Nick like a regular kid whenever she could. She and her husband (who is very shy so I won’t mention him by name in this blog… let’s just call him…“Guy,”) did such a great job with Nick that he doesn’t remember being sick at all. A kid who had been sick at the same time as Nick recently died. Edith was extremely upset but when she went into Nick’s room to check on him and ask him if he was okay, he answered, “About what?” They have not raised him to be the kid who had leukemia and Edith never seemed to revel in the role of the tireless martyr mom of sick kid. She has always done what needs to be done. She has always had the common sense to take a break when she needs it.

She’s like that with me. I never get the sense from my inner circle of friends that any of them are trying to rack up friendship points in some weird ALS themed video game. Edith just kind of quietly takes care of things that need to get taken care of and some that don’t. For example: I can’t drink from a normal cup anymore so I need to use a straw. The other day Edith shows up at my house with a crate of 3,000 straws. I think I’m going to put it in my will that whatever straws are left should go to build a memorial straw sculpture made by Edith herself. I think a fitting tribute to me would be a giant straw man that people could knock down in my honor. Edith would probably give it a giant straw penis because she also has a very cruel and wicked sense of humor. I love watching her eyes when she says something hilarious yet mean to me because there’s this naughty twinkle that takes about 15 years off of her… which still means she’s very, very old.

By the way, she would blame the straw man’s penis on me. Don’t let her get away with that bullshit.

So as the days get shorter and nights get colder and we creep up toward Thanksgiving, the first blessing that I’m going to write about is my friend Edith. Glamorous, good, creative, and a real smart ass. I love you Edith. Happy Birthday.

How to Piss Off the Fatally Ill

2009-11-16T15:44:00.000-08:00

How to talk to someone with ALS: The Do’s and Don’ts

1) If someone tells you that they have ALS, do not respond by saying, “You know I’ve been getting these headaches. Do you think I have ALS?” I’m not saying never do this. You may do this if the ALS patient to whom you’re addressing is, let’s say, A FUCKING NEUROSURGEON. You may also say, “You know I’ve been getting these headaches. Do you think I have ALS?” if you’re okay with the response, “No. I don’t think you have ALS. I’m pretty sure you have an inoperable brain tumor.” This will probably not offend you because if you said, “You know I’ve been getting these headaches. Do you think I have ALS?” you no doubt have a very small brain. Which means you are a DUMBASS. Other than these 2 examples, it’s really better not to ask someone with ALS to give you this complex diagnosis that takes some neurologists years to figure out.

2) Here are the circumstances under which you can say, “I know how you feel,” “Tell me about it,” or “Girl, I’ve been there” to someone with ALS. The circumstances are: If you are an asthmatic quadriplegic with a speech impediment who has created an incendiary piece of art that has inflamed the Muslim community and caused them to put a fatwah with a price of 5,000,000 dinar on your head. Let me check, yep. That’s pretty much the only circumstance that you can say those things.
Please note: If you are an extremist Muslim, say, a Wahhabist, and take offense at this, PLEASE put a fatwah out on me. That sounds like a much more interesting way to die than ALS.

3) Do not tell someone with ALS what death and the afterlife are like, unless you went through a dark tunnel following a white light at the end of which you were met by Elvis, who told you to go back because it wasn’t your time yet and you were needed on Earth to make rock’n’roll history. If this has not happened to you, I am kind of confused as to how you could make any claims about the afterlife and, in fact, I will go so far as to say that if you make these claims to me, I will make it my personal mission to haunt you and make shitty predictions about what will happen to you during the course of any given day. When I’m wrong, I’ll say things like, “Hey, how was I supposed to know? I’ve never sky-dived.”

4) Please do not volunteer advice to someone with ALS about forgiving former boyfriends, family members, etc. I’m pretty sure that if I hang on to a grudge with you-know-who-you-are (oh no, you don’t, because you don’t read this blog). Anyway, I’m pretty sure that if I hang on to a grudge with the aforementioned you-know-who-you-are, it will not prolong my life. If it did, I would get me some more grudges and stay bitter until stem cells are perfected. Truth is, people who die of gunshot wounds do not forgive the bullet, the gun, or the asshole that shot them. And they still die.

5) Don't call me differently-abled. I used to walk and feed myself and dress myself. I'm not different now. I'm worse-abled. It kind of sucks to lose abilities. It's not just different. I know I sound demanding and bitchy, but that's me putting the "dis" in "disabled."

6) Ixnay on the Esus-Jay.

Here are a few Do’s.

1) You can say or do almost anything if you’re saying or doing it from the heart. You can even say really banal and clichéd things that you only read on greeting cards with pictures of sunsets, and if you really mean it, and if you’re saying it as much for the revelatory nature the words have in the context of crippling illness and untimely death, then you can say things like, “Make every moment count” and it will be okay. Please note: While I agree that it is important to make a lot of moments count, I don’t think it’s fair to tell someone to make every moment count, because they will fail. A lot of people with ALS are type A over-achievers (except of course for slackers. Yes, I’m talking to you, Stephen Hawking. Come on! You live 40+ years with a disease that has a life expectancy of 2 to 5 years and all you can come up with is A BRIEF History of Time? Hell, if I had that long, I could come up with A Relentless and Tediously Long History of Time. Ooooh snap! Stephen Hawking, you’ve been served!), so if you tell them to make every moment count, they’re going to feel guilty when they sit glassy-eyed in front of the TV watching episode upon episode of MI 5. How about, “Make a shit load of moments count, but leave time for TV, tanning beds and masturbation.” Just a thought.

2) You can say tasteless things. See above.

3) If you say something stupid, try to make it so colossally stupid that the person with ALS gets the indescribable joy of repeating your faux pas to everyone that will listen and, perhaps, even write a blog about what an idiot you are. A fatal illness does not cure one of being judgmental, gossipy, or prone to Schadenfreude. One of my favorite reactions, no make it two of my favorite reactions, to me telling someone I had ALS was a guy who brushed me away with a wave of his hand and said a word that can’t be spelled, though might be spell-able in Yiddish. The word is “Ach!” The context was, 1) wave of hand and brush off gesture, 2) emitting of sound, “Ach!” 3) departing bellowing the words “Stem cells!” The other guy who did this was an actual medical doctor. For more bout him, see my blog titled, “The Worst Doctor Ever.” His response was, “Go stem cells!” in a kind of Inspector Gadget, “Go Go Gadget” way. I must have told a hundred people about these two guys. It brings me great joy to see the look of horror and disbelief on people’s faces when they realize that actual carbon-based life forms would say that to other carbon-based life forms. I also love love love the lady from Shanghai who also dismissed me with a wave of her hand and said, “Dohn worry. Darri Rama say you gohna have anuda rife.” It was oddly comforting in an absurd way.

So let’s review: Don’t be a little bit stupid. Be really REALLY stupid. Don’t worry about what you’re saying because if you’re worrying about what you’re saying, you’re probably getting it wrong. Do make tasteless and inappropriate jokes if the occasion requires. Don’t ask for a diagnosis from anyone other than a licensed professional. Don’t mistake yourself for a military chaplain on the front lines or a guy in a cave on the mountaintop dispensing deep spiritual shit. If I want that, I will find an ADA accessible cave complete with ascetic monk. Empathize with extreme caution. And do your own forgiving. I’ll do mine.

I know I missed out some crucial Do’s an Don’ts. If you have ALS and you have something to add to this missive, please blog comment.

PS: To the person who was offended by my comments about Lou Gehrig’s sex appeal. I’m sorry you were offended. However, I’m pretty sure that there is not a man out there who is bummed out when he hears that somebody in the world would totally do him. As a matter of fact, any man who hates it when he finds out a person thinks he’s hot, please write a blog comment and enlighten us. I don’t think it disgraces his honor to point out that he was a hottie. In fact, I heard - probably in one of his biographies - that he was hung like an Iron Horse. At least I think I got that right.

no time to die

2009-11-11T20:28:00.000-08:00

Every now and then I wonder what possesses me to take on impossible tasks. I do, after all, have a fatal illness, though you wouldn't know it because I am so good lookin' and I have no fucking time to die. If anyone has earned a break it's me. But the truth is my projects are what keep me going. I live for seeing the inate and ridiculous possibility in something and then making it happen. I love the moment when " what if " is transformed into " it's on! " And so it was with the Always Looking Sexy Calendar. I mean it makes utter sense. Lou Gehrig was dead sexy. If I were alive in his day, the only thing that would stop me from having sex with him would be...a bed full of young Willie Mays. (He could " say hey" to me any day.)

ALS folks are often sexy (David Niven, Shostakovich, me ). Often brilliant (Stephen Hawking, Charles Mingus, me). And
often very persuasive (Mao Tse Tung and well...me.) Unless Shostakovich was persuasive, I am claiming exclusive bragging rights on all three.

But back to the ALS calendar. Because I took on this ludicrous project, I have had the rare honor of filling my life with heroes and no, I don't use that word lightly. Jason Picetti, father of 19 month old Emma can barely speak but his voice is stronger than most through his warm intimate and upbeat writing. Likewise expectant father of twins, Scott Lew, whose prolific output of screenplays combined with a quicksilver wit puts most " full -fingered" artists to shame. Scott was describing the humility and courage of Lou Gehrig to me and I didn't want to embarrass him, but I thought " Dude, that 's totally you! " Sarah Ezekiel works tirelessly to promote ALS despite being a single mother relying on technology for all her communication.

Oh, I desperately want you to know these people. I want you to fall in love with beautiful, wickedly funny Megan Mishork and be delighted with sweet and charming Corey Reich -tennis coach and super fund-raiser. Or Dennis Myrick who implausably is still working even though he's on a ventilator. Not to mention the hot and hunky Gary Temoyan, the charming and funny Steve White and a few folks I don't know as well (yet) like Jim Cullie, Dianne Kendall, Augie Nieto and Marilyn Silva-inspiring one and all.

Now I am not trying to suggest that people with ALS are inherently more heroic than anyone else or that we suffer more or that our cause is more cause-worthy than poverty, pancreatic cancer or Derek Zoolander's School for Kids Who Don't Read Good and Want to do Other Things Good Too. I am just sharing. These people and my Forbes Norris care providers (fuck you managed care - you just made me use your euphemism) and my loved ones have taught me more about hero's journeys than Joseph Campbell ever dreamt of.

I am in awe of the bravery I am priviledged to witness in these people. I know they have the same dark days that I do. I imagine those with advanced ALS would have gotten it when I said yesterday to Kris after a day that felt like my caregiver issues were straight out of a plot of a David Fincher film, " Lungs, please fail me now! "

I can only speak for myself, but there are days I feel like I'm impatiently waiting for death to come and free my hands and feet from the railroad ties and that my increasing helplessness is an oncoming train. And then I am rescued by a project or by an elaborate practical joke or a mad scheme and suddenly I am George Peppard in the A-Team, loving it when a plan comes together.

I began the calendar project rather impulsively, justifying it as I went along, convincing myself that it was philanthropic after the fact. I got it wrong. These people feed me. The response to the project buoys me. I keep learning and learning how little I know - how little I have always known. I said when I was diagnosed that I would not become a "spokesmodel for ALS"... on the Internet in front of witnesses no less... and this year I am the fucking poster girl for the International ALS Alliance. I do not shit you. Look it up! (on a side note, I asked Dee Norris to tell the Alliance that I was dying to be a poster girl but she said no. )

I have been on this remarkable journey and though I know the end is near, it ain't over yet. There are still so many things to be wrong about,so many ways to shock and provoke both for cause-worthy and frivolous purposes. I still have time to wheel around Berkeley with a bumper sticker on my wheelchair that reads " Paraplegics are Pussies", and see if I get my ass handed to me,which is quite likely since paraplegics have mighty arms... for pussies. There is time to explore the endless sight gag potential of durable medical equipment and to get thirty more years of dirty jokes and silly stories told in the short time I have left. Finally, there is time to harass and cajole you all into buying an absurd number of calendars. The link to the calendar website is now on this page under links.

After that, I can finally pencil in some time to die on my own calendar and when I'm gone, you can tell your kids and grandkids "Do you hear that bell? They say that every time a bell rings, an angel is making out with Lou Gehrig." Please note how I softened that bit for the kids.

And PS: don't forget the sneak peak of Leave them Laughing on November 20th!

The Little Mermaid

2009-11-09T10:23:00.000-08:00

As you can see from the picture below, I don't have much time before I have to get back into the sea so I'll make this brief: The calendar is coming. The website will be up in a day or two so you can order all of your Christmas and Hanukah presents. If you order 100 or more I'll throw in a bottle of hand lotion. Yeah, I said it.

A Call to Action

2009-11-03T21:42:00.000-08:00

Love is not so much a feeling as a call to action. If you and your partner are healthy and prospering don't think you are off the hook. Love is still a call to action. A call to wake up every morning and really, really see the person you love because isn't that the first spark? To be really seen? Love the person in front of you, not the imaginary one you have decided is somehow superior.

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

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

My brother’s wife lay in the ICU almost one year ago. He didn't know what to do. His wife was hours away and a huge snowstorm was due. If he went to see her, their children could be alone with neither parent should he get stranded in the storm. But his wife might die. How does someone choose? How do you live day after day with such stress and no end in sight? Love, true love, kicks your fucking ass!

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

My dad has moved here to help take care of me. I am often a big, stubborn and cranky project and there's no " World's Greatest Dad " T-shirt waiting after he returns from the third Target Store. He helps because that 's what parents do - without expectation and often without hope of rewards.

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

We are all so blessed and we don't remember that as much as we should but right now I'm Tom Hanks in Saving Private Ryan and the healthy among you are Matt Damon and I am telling you without a trace of irony: " Earn this. "

Guest Post: Maclen Muses

2009-11-01T00:52:00.001-07:00

This Special Guest Post Was Written By Maclen Zilber

Hello Muselings, most of you know me, but for those of you who don't, I'm Carla's son, Maclen. You can all call me Mac (Except for you...yes you, the one reading this on a 2003-era E-machine, wearing those shoes with the shiny plastic that went out of style around the time that your E-Machine broke for the second time...One reader probably just said to him/herself, "Hey, why me?" I'm just messing with you, hypothetical person...but seriously, an E-Machine?).

Carla has asked me to introduce myself to all of you, for three reasons, two with levity, and one that is more sobering.

The first reason is that, as some of you know, I am now attending UC San Diego, meaning that I am no longer helping care for her, and guest-posting in her blog allows me to save her the time of summarizing what is going on in my life. Additionally, it allows me to assure those who don't know her as well that she is very well cared for by friends and caregivers in my stead. If that weren't the case, I would have postponed my education.

The second reason, which goes hand in hand with the first, is that you'll like me. Well, most of you will (except for you, e-machine user), and the rest of you will pretend you do.

The third reason, and the more sobering one, is that, when the time comes that my mother passes away, I will make a series of conclusory posts on this blog to let you all know. None of us want to think about this, but Carla and I both feel that, when it happens, it would be better for you to be informed by somebody you are familiar with (through the blogs and the movie, if nothing else), rather than hearing through a stranger, or through hearsay. However, I don't want readers to think, "Oh my god, this must mean that she has passed on" every time I make a post on here, so I will promise to you that that final post, on that unhappy day, will be titled "Carla Anne Zilber-Smith: In Memoriam." That should save you all a few heart palpitations. Any post I make here without that title is just another run-of-the-mill guest post. (Well, that's assuming that anybody could honestly call a guest post of mine "run-of-the-mill," which would be on par with saying that Usain Bolt with a wind turbine factory on his back isn't run-of-the-mill**.)

Do we have a deal?

Good.

(What was that, E-Machine user? You're not agreeing to the deal? That's awful petty...Okay, what if I let you call me Mac? Now You agree? Good. I like unanimity...though that was a pretty tough concession to make...)

Now that we've gotten past the introductions, and now that my name will be inseparable from mortality in the minds of many of you, I'll end this post on a lighter note: My life in La Jolla

I had a jarring pair of thoughts the other day. You see, the first half of the pair of thoughts was, "wow, I am surrounded by Southern California kids." That was disgruntling enough. Then I had an even stranger thought. "I guess I am a Southern California kid now." You see, about a month and a half ago, I left the Bay Area to begin attending UC San Diego.

The physical environment I'm in is something of a dream come true. To begin with, I'm in pretty much the only city in the country with better weather than the Bay Area. It's never too hot, it's never too cold, and it has a beach so enticing that two recent presidential candidates own vacation houses here. People always warned me that when I moved away from home I'd be unable to deal with weather that wasn't the Bay Area. I hate to say that I hate to say I told you so, because it's simply not true. I love to say I told you so, and I totally did.

The intellectual environment here is also something of a dream come true. It's a little known fact, but UCSD spends more money on research than Harvard, Yale, Stanford, Cal, or MIT. It's known as traditionally just a science school, but its Political Science department, where I'm studying, is an exception to that rule (ranking ahead of MIT, UCLA, Northwestern, and Duke). As an exemplification of the high quality of the department, one of my professors this semester is Sam Popkin, the man who was jailed over the pentagon papers, was a top pollster for 6 presidential campaigns (including three winning presidential campaigns), and has been the head of polling for both CBS and The Economist.

The residential environment I'm in is something like a Patrick McGoohan acid trip come true...in a good way. As a preface, for those of you who don't know, I skipped three grades, which makes me the second youngest transfer in the graduating class of 2011. Luckily, the 1st, 3rd, and 4th youngest transfers in the class of 2011 are my roommates (in other words, we have skipped 10 grades between the four of us). It's a veritable mini-think-tank, probably thrown together by the university as some sort of social experiment. Luckily, there's still enough sophomoric humor in the apartment to make my mother proud.

I'm also fitting in well in terms of extra-curriculars. I'm currently settling in to the position of Director of Policy Initiatives in the school's student government, a position that allows me to help make a difference in a number of different areas. Currently, our work includes establishing a men's football team and a women's LaCrosse team at UCSD, founding an umbrella organization for all of the student governments in San Diego County to lobby in Sacramento on behalf of students, and setting up a speaker's series at UCSD with a number of prominent public officials and politicians.

Up next on my list is to join the improvised theater club on campus. A future guest post will discuss the profound impact that being involved in Carla's improv groups had on myself and so many others.

Thanks for tuning in! I'd like to thank all of you for the support system that you have provided for Carla over this rough period of time. You are truly wonderful people. Even the person with the E-Machine. I'm looking forward to seeing some of you at the upcoming preview of Carla's show at College of Marin on November 20th.

**Question of the day, since I'm in the business of making "run-of-the-mill" puns. Are any readers confident enough in their literary and economic knowhow to know how a "run on the mill" could lead to inflation in a specific one of Mark Twain's novels? And no, the internet won't help you with this one.

2 blog days in a row...

2009-10-31T12:03:00.000-07:00

I was talking to my brother the other day about the anti-bucket list. It’s the list of things that you never did and you’re glad that you didn’t do them. I encourage you to write in to me with your anti-bucket list things and I discourage you from arguing with me about mine. Here are a few:

1) Tyler Perry movies. I’m sorry Tyler Perry had a bad childhood, but that doesn’t give him the right to make bad movies. He’s the Chevy Chase of black people and I can’t include Chevy Chase on my list because, sadly, I’ve endured one of his films.

2) Okay, don’t get all huffy on me, but Cirque Du Soleil. I’ve only seen youtube clips and the pretentiousness of even the clowns made me want to run over them with a tiny clown car.

3) I’m really glad I never had the “full enchilada” waxed. I think that would hurt. A lot.

4) White jeans.

5) I’m really glad that I haven’t been to the Middle East, the Midwest (does Ann Arbor count?), or most of Canada, which is uninhabitable beyond a certain point north.

6) I’m happy I will die without ever eating blowfish.

7) I have never been to a frat party, a sorority party, a scrapbooking party, or a Tupperware party.

8) I am perfectly fine with the fact that I have never tried cocaine, although I did mention to my brother that if I were a heterosexual man, I could see how it might be fun to sniff it off of a prostitute’s belly, since it has a certain iconic resonance. But I imagine even that experience would be highly disappointing.

9) I’m glad I’ve never been saved… I mean, spiritually. I’d love to be saved from ALS.

10) I have no regrets about never having discharged a firearm.

11) There are literally hundreds of men that I’m glad I never went out with and at least 20 that I’m glad that I’ve never went on a second date with.

12) I have never been to a Country Western concert although I would like to go to a Country Western Bar and I would have liked to have fucked a cowboy… Though I haven’t met very many straight ones.

13) To my knowledge, I have never worn a sweatshirt or T-shirt with an adorable puppy or kitten on them. If I can no longer speak or move and Edith puts one on me just to be mean, take it off, then shoot me.

14) I’ve never played stupid online games and posted my results on facebook.

15) I’ve never sent a text, except by proxy.

16) I’ve never used an internet acronym in a non-ironic context.

17) I’ve never told anyone I hated them, except this one guy and I really hate him. In fact, I would like to tell him I hate him again before I die… so we could put that one on the bucket list.

18) I’ve never gotten “Girls Gone Wild” level drunk. Although I was drunk enough to have a fierce battle involving rolling down a flight of pub stairs wrestling a life-size and real-looking Batman. I won.

19) I’ve never shoplifted. Or engaged in any kind of petty theft.

20) I never took a college-level math or science class. This makes me unspeakably happy.

Now don’t get me wrong, I would rather have done some of the things on this list than sit around and not trying new things. Some of the things I’m most proud of are my colossal failures and the moments where I made a complete and utter ass of myself because I had a profound sense of how much I never wanted to do that thing again. Some of the things that I have done that I shouldn’t have done or maybe shouldn’t have done are probably more valuable than the anti-bucket list and as valuable as the bucket list. A lot of them, I can’t repeat. Not because I’m ashamed, but because they involved other people who maybe don’t want to relive a time when I was a complete bitch-slag. I will admit that I have been fired, I have been involved in reckless driving activities, I have broken someone’s heart, I have said really bad things that I regret, I have had falling outs with good people, I’ve dated stupid guys because they were cute, I have committed unforgivable fashion crimes, and I’ve let my friends do the same without intervening, which is tantamount to handing them the keys when they’re drunk off their ass because you know a fashion crime doesn’t just harm the wearer.

Did any one see the movie, Sliding Doors with Gwyneth Paltrow? The premise is there are different roads in life that we can take with different possibilities along the way. If I’m not mistaken though, she ends up with the same guy at the end of the movie regardless of which path she takes. Maybe each choice we make doesn’t have the butterfly effect with the vast consequences that we think it does. Maybe if we retraced our steps, and scrutinized the forks in the road, we would find that ultimately, they led us back to the same spot… Providing, of course, that one of our choices didn’t get us killed or convicted of a crime. Maybe life is just a balancing act where we alternate between taking great care that our emotional footprint doesn’t crush someone else and throwing caution to the wind and boldly daring to make mistakes and bravely learning from them.

Having said that though, I would only want to see Cirque Du Soleil the way Seth Rogan and Paul Rudd saw it in Knocked Up – wasted on magic mushrooms on a weekend getaway to Vegas.

Switched at Death

2009-10-30T13:48:00.000-07:00

I saw the same old man two days in a row. He wore a straw boater with a brilliant red band and matching socks and tie. His royal blue pants rode high to show off his ladies' knee socks and of course he wore red sneakers. He was tall and cartoon strip thin. I could have been old like that. Or like my 87 year old friend Beverley who is only now beginning to slow down. Or like my granny whose crinkly velvet skin and enormous pillowy breasts were just right for cuddling.

I'm wearying. The Shakespearean comedy of mistaken identities that I find myself starring in is getting old. The play is called " Switched at Death " and it is the story of a fiercely independent woman with an unusually quick brain and a zesty sense of adventure who is accidentally assigned the wrong death -slow and irritating and frustratingly helpless. Our heroine is forced to have somebody do everything for her and often with baffling results. Meanwhile a limp and passive devotee of reality TV gets to, through some massive clerical error, die riding a motorbike through a hoop of fire across a large canyon. The bike swerves off course and it's quick and dramatic, this fiery red and orange death.

Where the fuck is my motorbike and my hoop of fire???

Get your reading glasses! Bay Area, Here I Come!

2009-10-23T12:47:00.000-07:00

A Cripple Danced at a Gay Cowboy Wedding

2009-10-19T15:44:00.000-07:00

I got mad at California all over again this weekend. I had the privilege to attend the commitment ceremony of Bobby and David. Now, I have been in love a few times in my life but I have never known a love with a partner like these two men obviously share. So why was I at a commitment ceremony and not at a wedding? All around me were committed same sex couples (you can tell by the matching mustaches) who showed more affection, made more eye contact, and danced together more than I ever see at the weddings of my straight friends. It was one of the most romantic weddings right down to the hanging votive candles strung across the barn like a Fire Marshall’s wet dream. So here I am in a wheelchair with almost no use of either my hands or my legs, sitting at a cowboy wedding in my cowgirl outfit watching all these couples dancing, in particular one big tall strapping (AND STRAIGHT!) cowboy named Kurt who was hands down the best dancer there. When at some point I told him what a great dancer he was he said “Come on, let’s go. I’ll dance with you.” And he picked me up and god damn it we danced!

The wedding also got me thinking about love. We all know the kind of love and devotion that David and Bobby share, but we all find it in different places. I can safely say no man that I’m not biologically related to has ever been as devoted to me as these men are to one another. However, I have friends and family that show up for me in such a fiercely loving way, on a daily basis, that I know what it is to receive that deep unselfish freely offered love.

The other night Wendy, Barry, and Jenny and I went to hear Shawn Colvin and when she sang “Ricochet in Time” I cried from the first guitar phrase to the end of the song, and my tears passed around the table like a game of telephone. I was crying at the words which I receive as a triumph over pain, I was crying about the way that songs can do what poetry and instrumentals can’t – at the way they cut right to the heart of things, tell a story, lift your spirits, and stir something in you. I was crying at how sweet her voice is and how no man has ever broken my heart but not singing is the only experience I’ve had that makes me touch that pain and understand what it truly is to have your heart broken.

On Thursday four other folks with ALS came over to my house to be photographed for my sexy ALS calendar which will be available soon, so your Christmas / Hanukkah / Kwaanza shopping is already done for you. You’re welcome. Corey Reich was Tom Cruise from “Risky Business”. This is the young man who along with his family has already raised a million dollars for ALS. Megan Mishork was a radiant Sally Bowles from Cabaret. Her aunt Marilyn Silva (the family has familial ALS strike every generation) was Sharon Stone in “Basic Instinct” and Jason Picetti who writes the blog, ALS boy, which is linked to this site, was a Don Juan DeMarco type character, surrounded by beautiful women who kissed him a lot! I was Jennifer Beales from “Flash Dance”. I have to tell you that putting this together in my physical state was one of the proudest achievements of my life. It was amazing to me to see the different forms of bravery and optimism that ALS shapes in people. Some of us tirelessly raise money and never give up hope for a cure. Some of us are advocates trying to create change on a political level. Some of us write and try to share our experiences with others, some of us are devoted parents, and some of us are way too young to even think of being parents yet. Some of us will hang on as long as we can with feeding tubes and ventilators, never giving up on the belief that stem cells or some other miracle will end this and we can return to the life that we realize is so precious. Others (like me) will just let nature take its course, have as much fun as possible but don’t want our hearts broken hanging on hope that an incurable disease will become curable just in time for us. I think they’re all perfectly rational and intelligent ways to handle something so very shitty. If you had been there, and got to meet all these people face to face you would not have been depressed. You would have left the photo shoot loving your life even more than you had a few hours earlier. These people rock!

I’ve decided to give my body to science when I die. I figure I owe science something since I was so neglectful all my life. All I can tell you about biology is that Mrs. Ho (who mercifully for her, taught at a time when a hoe was merely a farming implement) had a mole with the longest hairs you have ever seen which would wrap around each other like some kind of puzzle. I would spend the entire class imagining how I could tell her that she might want to consider a trim. That’s the extent of what I remember from science, so it’s pay back time.

The only thing that sucks about giving your body to science is not having a tombstone which gives new meaning to the phrase “Kicking it Old School”. If I had a tombstone it would say one of the following:

• It’s the new alive!

• It’s not the length of the life, it’s the angle,… baby!

• If you died here, you'd be home now. (This tombstone would be shaped like a billboard.)

One of the criticisms I received in the past is that my mentioning of death or referring to it as a foregone conclusion is somehow defeatist or negative. I always reply “We’re all dying, I’m just an over-achiever.” And the truth is, we enter the world and almost immediately begin the inevitable decay. Someone who reads this blog and is perfectly healthy could die before me. I believe that acknowledging not only that we can, but we will die helps us to get out and live.

I get to live and I get to be witness to all of this. A witness to love, to courage, to generosity, and also to miracles.

And speaking of miracles, when a big strong straight man is the best dancer at a gay wedding, I believe anything is possible, maybe even an eleventh hour cure for ALS.

and p.s. to the blogger who asked where to find my new cd: it will be available on cdbaby.com\carlazilbersmith in a couple of days and for digital download on itunes, amazon, etc. by the end of the year. the new cd is called uncovered and another cd entitled songs about love, death and wings will be available on cdbaby in time for the christmas rush.

Partici-blog 3

2009-10-12T09:26:00.000-07:00

Dear Muselings,

Someone who reads this blog will no doubt have an answer to a question that has been plaguing me and that has stymied none other than the esteemed google. Here it is: The other day, the sun was shining and I was in my backyard watching a vine that looks like --but is not -- a clematis... at least I don't think it's a clematis. It looks like a clematis with a hard-on. Anyhow, there were several monarchs making various flight patterns around the vine and in between them were what appeared to be large bumblebees, but at closer glance, I realized they were not bumblebees, but tiny replicas of the monarchs. They even flew in the same formation as the monarchs in a sort of synchronized choreography. The markings were beautiful, but less vivid than the butterfly, though prettier than a moth. Because of my propensity to anthropomorphize, I decided then and there that they were baby butterflies, but upon reflection, I realized this was most likely bullshit. Don't butterflies emerge from the chrysalis fully formed? I mean, I mostly slept through science films, or enjoyed getting my hair combed and braided by whoever won the fight to comb and braid my hair during a boring science film, but I do seem to recall seeing a beautiful adult butterfly metamorphosize all at once.

So what the hell was I looking at?

On September 11th, I got what seemed to me some extremely shitty news. It was the same week that Mac left for college and one of the final weeks of a valiant and hard-fought divorce, which went into triple overtime. I was the Golden State Warriors 'Nuff said. The following week, I went to my clinic to discuss some really really tough stuff. Before I left, I had a yoga session with Claire, who comes twice a week t stretch me. I looked out the window and four monarchs were swooping in figure 8's around a hummingbird that shone iridescent emerald green in the bright sun and I knew at that moment that it didn't matter if the universe was telling me that everything was going to be okay or if I just had decided that's what the universe was telling me and I was really as looney as Joan of Arc. What mattered is that I got sucked back into the present and away from the treacherous world of what if, if only, and why me.

It got me thinking about the little serendipitous moments that often disguise themselves as something entirely different than what they really are, which is a reminder of how delicious our ridiculous little world is. So I propose a third partici-blog. I would like you guys to write in about a moment that was so funny or so silly or so miraculous that you forgot to be upset. Here is your starter kit:

1) Years ago I was having my first facial (not the sexy kind). The woman put all kinds of soothing aromatic masks on me and told me to lay back on my warm bed and relax. As she left, she put on some soothing music... but it was the theme to Schindler's List. I laughed so hard I cracked my face mask at the thought of her wanting me to relax to a Steven Speilberg Holocaust Special.

2) A memory I have of Mac, myself, and my caregiver, playing Rockband... Mac on drums, caregiver on guitar, and me choking out Hungry Like The Wolf.

3) I was on the phone to a lady giving a reference for one of my caregivers. The lady said to me "So, Natta tells me you are a singer" and I answered "Well I used to be a singer but now I have Lou Gehrig's disease and can no longer sing which is why Natta is taking care of me" She responded by saying in a very school teacher tone "Well yes, that is a very unfortunate disease which was made popular by Marilyn Monroe who was dating Joe DiMaggio at the time. Huh?. My friend Kris who is listening in to the conversation was laughing so hard she had to leave the room. I too was laughing but I think she thought it was all part of my "popular" disease.

4) My brother showed up at my house and said "I just said something that I thought I would never say in my life. The kids were fighting in the back seat and I heard myself say 'why don't you tell the unicorn to ask the flashlight to stop doing that?"

5)I went to the same sushi place for about 10 years. The second to last year I used a cane and eventually I wheeled in in my chair and finally the lady behind the counter asked me what happened. I told her the whole story and she gruffly dismissed me with a wave of her hand and said "ach, don't worry. Dali Lama say you gonna have another life. $7.99 -you need chopsticks?"

I swear, I got hundreds of these and so so you.

So that's your assignment. Share something absurd. Something unexpectedly beautiful. Something that defies the delight you take in it.

Love America? Boycott Whole Foods

2009-09-30T09:01:00.000-07:00

Why does the owner of Whole Foods use his money and influence to try and defeat healthcare? Is it because he's.....EVIL? Or is it because he thinks if people can afford his store then Blue Cross is a cakewalk. This video demonstrates how utterly awesome is this generation of young folks. I adore them as much as I loathe Whole Paycheck.

Operation Hey Mackey! - Whole Foods, Oakland from Jamie LeJeune on Vimeo.

Trying a Vlog for a Change --Whaddya Think?

2009-09-26T20:02:00.000-07:00

Will Ferrell stands up for the real health care victims

2009-09-24T18:24:00.001-07:00

Apparently, I'm Awesome

2009-09-23T13:55:00.000-07:00

I'm in bit of a pickle here because I want to promote the documentary that's currently being done about me, but I don't want to look like I'm tooting my own horn. Unfortunately (or fortunately) a lot of the quotes below make it impossible for me to look like I'm not a bloviating narcissist, but I'm going to include them anyway because I think it's gonna be a great film and I want you all to watch it when it comes out. Here goes...

Leave Them Laughing has now been screened by test audiences in Berkeley California, Philadelphia Pennsylvania and Vancouver British Columbia. Here's what those audiences have to say.

"Compelling viewing,very moving"--Peter,65, retired
"Awesome.Why does life need people like Carla to make us realize what we should already know" Tom,50,businessman
"Carla has an amazing sense of humour." Tim,47, mechanic,
"I really enjoyed the whole fucking thing,especially the parts where I cried" Justin,36, carpenter
"Loved the off the wall humour"Chester,55,painter
"An amazing film, one of the best I've ever seen" Sam,21,tradesman
"Awesome, the humor is outstanding given the subject matter" Tom,48,carpenter
"This movie kept me laughing and I will always remember Carla" Susanna,24, hotel supervisor
"Thanks for introducing me to Carla. Her humour in the face of adversity is what I enjoyed most." Jean,53, designer
"Carla is a brave lady to make such a heart rending film, inspiring but sad" Anonymous female, 65,retired
"Thank you for introducing me to Carla who is fucking amazing. She has had a major impact on me" Vickie,36,bartender
""The movie is a true inspiration. I now cherish everything I took for granted an hour ago." Jenny,24, waitress
"It made me laugh and cry." Melody,26,photographer
"I really loved the film. It was powerful and inspiring, funny and highly entertaining." Christina,27,lawyer
"Loved it,a really strong movie and emotional experience," Rami,21,college student
"It seemed like the film would be a difficult balancing act between the seriousness of Carla's illness and her humor but the film was a perfect blend of the two." Mark,24, film editor
"Carla is fucking brilliant" Anonymous female,24, public relations
"Bravo. I really liked that Carla talked about her ALS experiences in a positive way." Lauren,21,student
"I really enjoyed the inspirational parts that remind us to live life to the fullest." Tanya,33, filmmaker
"Very up and down emotionally, you go from sad to glad in seconds." Karl,49, contractor
"A moving movie. I really enjoyed seeing a sense of humor from a person that's dying." Alphonse.56,taxidriver
"Fucking just great" John,57,cabinet maker
"Excellent balance of sad,humor and "tear jerking" episodes" -- Len,73,retired
"Oh my, I cant believe someone can crack jokes while going through this awful disease." -- Lilo,74,retired
"Swearing is not my thing but Carla has made everything she says and does so very compelling." -- Kel,65,Consultant
"I couldn't stop crying. Carla and Maclen are so brave,funny and completey loveable." Lyn, 69,retired
"How is that a film like this changes your view of life so completely. Man, compared to Carla I didn't know anything about how to handle tragedy." -- John 67 teacher-
"This is one very special lady. How can an hour and half change my way of dealing with challenges after doing another way for 70years." -- Brian 71 retired-
"I have a new hero,her name is Carla. Her humour,passion, talent and complete courage are now part of my memory for ever." -- Lael 47 consultant

Eat Shit Sock Monster

2009-09-20T10:29:00.000-07:00

The hardest thing about losing things is the questions.

” Do you remember where you had it last?”

Well of course you don't otherwise upon hearing this question, you would go back to that sink counter in the bathroom of the Peruvian restaurant and there it would be – your favorite hammered silver ring, waiting for you just where you left it.

“Why don't you retrace your steps?”

Sure, just wheel backwards and follow the tire tracks until you roll over that black cashmere sweater - the one that goes with everything. Or…

“Why don't you just pick a designated spot for your keys and keep them there? Then you won't lose them.”

Sigh. Because they’re keys, aren't they . By their very nature they must be moved around or you will be locked out of life. And the questions never make any sense, because when you lose things, you're not going to live backwards in time, calmly and dispassionately, like Mr. Spock. You're going to frantically scurry, like an animal trapped in a cage, pacing from corner to corner, desperately trying to retrieve what you've lost.

But not when you lose the big things. There's an eerie calm that comes over you when you lose the unthinkable. You neither retrace your steps nor think about the last time, because it's too unbearable. The last time you'll ever eat sushi, alone in a restaurant with your son. No matter how many times you think about that last time, it’s still lost. When you lose big things, you understand that. You breathe deeply and you try to find a ballast, something to hold on to so that you can sustain the next loss and the next loss and the next one.

Everybody jokes about where the lost socks go. Did the sock monster take them? Is there a sock island where they all congregate? Is there some cad making black market sock monkeys out of socks they’ve pilfered from people' s dryers? You could swear you put socks in there, in pairs, and you come out with a bunch of single useless fucking socks. Imagine, a pile of all the socks that you lost in your whole life. Then imagine that instead of socks those socks are the things that you find most important to you: walking, eating, talking, breathing. And imagine watching that pile grow bigger and bigger until you can't look anywhere in the room without seeing that accumulation of losses. That's what my bad moments feel like.

I said goodbye to Mac not knowing if we would ever go out alone together to eat again, because I can't really feed myself and I don't want him to have to do that. I said goodbye to him not knowing if I could ever watch a movie alone with him again, because it's too hard to try to shimmy myself onto the toilet without help. I said goodbye to him not knowing if when he comes back at winter break, my voice will be intelligible. It's almost too much to bear. I can't really describe it to you. It's just this primal, animal-like grief and that panicky noise you hear inside your head when you don't remember where you put your keys and you've lost the directions for a job interview or the soccer car pool for which you’re late. Only louder. Much louder. It goes to 11.

The hardest part of losing things is not the realization that you never appreciated what you had. It's the very deep understanding that you always did appreciate it, that you were worthy of it, and you still lost it. And somehow, you have to keep going. And you have to keep losing, and you can't give up until you've lost everything. I'm proud that I always knew it was a gift to sing, to be with my friends, and I'm proud that I loved every goddamn minute with my beautiful son. I don't know if that makes this harder or easier. Or it just is.

Benefit for Me

2009-09-18T15:12:00.000-07:00

If you're in the Bay Area, here's a great way to spend a Sunday afternoon. I'll be there with some of my friends and family. And I can vouch that the music is wonderful.

BENEFIT FOR CARLA ZILBERSMITH: The Jazzschool presents an intimate musical afternoon with Bay Area duo TESLIM featuring violinist Kaila Flexer & multi-instrumentalist Gari Hegedus. Teslim’s repertoire includes Greek, Sephardic, Turkish music and original music inspired by these fertile traditions. Sunday, September 27, 2009 at 4:30 p.m.

This afternoon performance will feature Teslim performing two songs Kaila wrote for her dear friend and a world premier of a third piece for Carla: a work by Flexer that will eventually be expanded for chamber orchestra. On hand to play this work-in-progress will be Evan Fraser, percussion, Katrina Wreede, viola and Benito Cortez, violin.

About Teslim:

Teslim (Tes-LEEM) means both 'commit' and 'surrender' in Turkish and features Bay Area musicians, violinist Kaila Flexer and Gari Hegedus on oud, Turkish saz, Greek lauoto. This potent duo performs Greek, Turkish and Sephardic music. In addition, both Flexer and Hegedus are composers who take inspiration from these fertile traditions. You may know Flexer for her productions of Klezmer Mania! and Pomegranates & Figs: A Feast of Jewish Music. Hegedus plays in Stellamara and the Black Olive Babes. For more information about Teslim and to hear music clips, visit www.kailaflexer.com .

Date: Sunday, September 27, 2009
Time: 4:30 pm
Event: Teslim (Kaila Flexer, Gari Hegedus) plus special guests play an afternoon concert of Greek, Turkish Sephardic & original music. This is a benefit concert for Carla Zilbersmith.
Venue: The Jazzschool
Location: 2087 Addison St. Berkeley, CA 94704
Tickets: $15.
For more info: (510) 845-5373 or www.jazzschool.com

Big Baby

2009-09-07T20:23:00.000-07:00

In 17 years, I can probably count on two hands the number of times my son has been unreasonable and I’d probably still have a couple of curled up, useless fingers to spare.

Those of you who are parents or prospective parents of babies, remember this: it sucks to be a baby. You don’t get to go where you want. You don’t get to defecate in any kind of receptacle – you just have to shit or piss in your pants. You sit stuck in a chair, watching people slowly prepare your food. You don’t get to eat when you’re hungry, you don’t get the amount on your spoon that you want, you don’t get to eat at the tempo you want. If your mom or your babysitter or your dad or whoever the fuck is feeding you is distracted, sometimes the fucking spoon doesn’t even make into your mouth. Now you’ve got food all over your cheeks. And whose fault is that? Not yours.

It sucks to be a baby.

If I were a baby, I would be absolutely insane, because my inner monologue would be, “Hurry the fuck up with that food, bitch. How long does it take to puree some squash?” But babies can’t even talk, so all they have left to their devices is to cry, and then we think they’re being unreasonable. Now compound that with the fact that they are so short that all they can see is everybody’s knees. They have to crane their heads up to look at their captors, except when people decide to get right up in their face and ask them stupid questions and they don’t even wait around for the answer.

If you have a baby that you think is being unreasonable I implore you, give me a call, and I can enlighten you on what it’s like from their perspective.

Which brings me to my topic of the day.

Now that I am in the same helplessness class as a baby, I find myself in an awkward situation. I have boundary setting fatigue and request making fatigue, because it’s hard to get people to take a request you made as some sort of global principle and figure out what needs to be done. So I find myself having to ask, every time the toilet paper roll is low, “Will you change the toilet paper roll?” Or, “Can you not get shampoo in my eyes when you wash my hair?” Or, “I don’t eat wheat or dairy.” To compound matters, while I am quite adorable, I’m not quite as adorable as a little baby so I worry that my bitching will get old quickly.

It’s fatiguing to have to give the same information out over and over again. So I find myself in this situation where there are only a small handful of people with whom I can relax and put my guard down, like my close girlfriends who have shifts that they regularly commit to every week to help me out. My other friends, who I love dearly, can’t keep up, not through any fault of their own, but because this disease is so changing and shifting. If you miss a couple of weeks taking care of someone with ALS, then you really can’t keep up with the program. Likewise, it’s challenging with caregivers because, in all but a rare couple of cases, I find that if people haven’t had kids, then they don’t know how to change along with the disease, because they’ve never had to practice that skill. I remember when Mac was a baby that every time I thought I had his routine down he would change it and I would think he was fucking with me but he wasn’t – He was growing up.

My level of anxiety around caregiver issues is increasing as it gets harder to talk. I know pretty soon, I’m going to be like that baby, unable to make demands and unable to articulate what is driving me crazy at any given moment.

Now let me stop and say this does not reflect a change in my attitude about life in general, about my gratitude towards the people in my life, etc., etc. I’m just letting you know that I have a new and deepened understanding about what it’s like to be that baby – crying because there’s something she wants and she cannot effectively communicate to people what that thing is.

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

Can you imagine having to ask someone to help you out of bed in the morning? To be forced to meet them at their level of cheeriness, even if you’re headachy, sore, and gasping for breath? To communicate with them, “Now I need the shower water a little hotter. Now a little colder,” and to deal with the fact that half of the time the water is not actually hitting your body? Then imagine your breakfast is served on someone else’s time table, and the coffee is not necessarily as weak or as strong as you like it, the eggs are never cooked quite the way you’d have cooked them if you were doing them yourself, the toast might be a little burned or a little bit underdone, and there’s never going to be the right amount of butter. Unless you micromanage, in which case, halfway through the day, you’re too tired to speak because you’ve shot your wad on breakfast. And you feel like you can’t complain because, by the end of the day, the food is going to be making you choke anyway, and there are only a few meals left, so you really have to enjoy the ones that you’ve got.

Now it’s 11 a.m. and you’ve barely begun your day. Someone joins you in the bathroom when you pee, someone puts you to bed to nap, and there’s ALWAYS somebody around, except on rare, rare occasions. That’s when you need something that you can’t get for yourself and you can’t lift your arm high enough to reach the cupboard, or you don’t have the strength to lift a water bottle and pour a little cup of water that somebody forgot to prepare for you before they left.

It is like running a marathon every day, only it’s 26 miles of good attitude, trying to find a way to set boundaries respectfully so as not to offend people, but strongly enough that people actually respond. Sometimes it’s hard to find the humorous thread in someone’s behavior, rather than succumbing to the lump in your throat you have because people can’t see that leaving something in the middle of the hallway makes it impossible to get from room to room in a wheelchair.

But here’s the kicker: the kicker is that there’s nobody to blame, just this stupid, stupid ALS. Because anybody who didn’t have good intentions towards me is not in my life anymore. The people that are here, whether they are able to take care of me or not, are people who genuinely care about me and who have made great efforts on my behalf. I’m under no illusions in that respect. I know how deeply I am loved, and I know how many sacrifices have been made on my behalf. And I know that there is a tiny minority of my friends who set the bar so astronomically high that Mother Teresa would be, like, “Really? You’ve got to be kidding me. I’m sorry, but I’m not Wendy OK? I’m gonna go back to healing lepers.”

Nonetheless, I am fatigued. I am worn out asking for what I want or accepting things that make me uncomfortable. I handle it the only way I know how, which is to try to distract myself with fun. But even that can feel fraught with peril sometimes.

Nonetheless, here is my solution to what ails me:

I am organizing a fundraiser for ALS research. I am getting 12 ALS patients to pose for a cheesecake calendar that can be sold to raise awareness and make a little bit of green and show people that people like us are just like people like you. I already have several people lined up to pose and wonderful friends who have volunteered to take pictures and to do calendar layout.

I am taking the Fuck Truck camping next weekend with a group of my wonderful friends.

I bought a beach wheelchair. Barbara and her husband took me to the beach yesterday, and I am hoping to get there at least once a week. I think that just breathing the ocean air will be a cure for a lot of what ails me. That and watching the kite boarders.

Some of my friends and I are getting together on Friday nights to watch movies in my backyard projected onto a big screen. We watched “Mystery Men” this week. And the night before, Mac and I sat out in the backyard and watched an episode of “ Rome. ” There is almost nothing I like more than hanging out with Mac and watching something gory and violent.

And speaking of Mac, he leaves September 16, and I will officially be living alone without my buddy. Please, please, please. Don’t write me or call me and tell me you know how I feel, because, unless you have a fatal illness and your actual days with your kid are numbered, you don’t. I’m sure it was sad for you when your kid went off to college, but you probably had a reasonably good expectation of being at his wedding and of hanging out with your grandchildren.

Do I sound bitter? Yeah, I probably do sound bitter today. But I have to listen, on a daily basis, to people who respond to my complaints with, “I know, me too.” If I say, I’m tired, please don’t say, “I know, me too.” I don’t believe you. If you hear me scream out loud and then double over in pain, and say, “I have a cramp,” don’t tell me you know how I feel, you have your period. Trust me, I used to have a period and there is no way that anything that has ever happened in the annals of periods could compare to the cramps that I have.

Wow. I sound like some mean old man today. I guess we’re all entitled to those days, and I guess it’s only fair that I share them with you, since so many of you have this moving but misguided idea of me as some kind of Superwoman on Wheels. It’s your Scooby Doo moment. The mask is off, and I could have gotten away with it too, if it weren’t for you pesky kids and your dog.

Oh, that reminds me. The other way that I am battling despair is I’ve commissioned Nata to paint the van. I love the idea—that gigantic monstrosity being even more of a spectacle, with mudflap girl on wheels, courtesy of Jenny, and any other crazy things I decide to paint on it.

It feels really scary to put so much negativity into one of these blogs especially when today I met a lot of amazing people at the MDA Telethon, including Jason Picetti, whose blog I will link to this one. Jason is younger than me, was diagnosed after me, and he has a gorgeous little baby girl. I’m sure he has his dark moments but he was so positive and upbeat and inspiring. You should read his blog but I caution you that the beautiful way he writes about this wife will make you cry your ass off.

Still I’m going to post the blog without purging it of the complaining… otherwise I won’t be posting this week. (This would be a perfect place to type LOL if I were ever able to bring myself to do so in a non-ironic context. If you are the kind of person that likes text language then you can imagine I said LOL and then you can ROTFLMAO) I get concerned about saying things out loud and giving them more power. I don’t want to give these bad feelings more power than they already have. But at the same time, they’re there no matter what I do.

At least, maybe if I share them with you, you’ll be a little more patient with your baby. Or with someone you love who has ALS or who is elderly or who is just acting like a big baby.

Mac and I do the Telethon

2009-09-06T18:27:00.000-07:00

Tomorrow (labor day), Mac and I will be interviewed live on the Jerry Lewis Telethon. If you are in the Bay Area, tune into KTVU-2. We will be on some time between 3:30 and 3:53 PM pacific time. If you're watching from somewhere else in the country, check this list to see if one of your local stations is carrying the telethon - http://www.mda.org/telethon/FindYourStation.pdf.

If you are unable to access television, you may be able to stream the telethon at the following web address:

http://www.mda.org/telethon/2009telethon/TelLive.html

Happy Labor Day!

Vegas, Baby, Vegas!

2009-08-25T16:21:00.000-07:00

How is it that I have never been to Vegas? It's said that Salvador Dali spent some time here, but I have to think he was a city planner, because Vegas is…..well…. Dali-esque. Las Vegas is a wheelchair rider's dream. Instead of weaving through a sea of crotches as I so often do, I was a minor character from "WALL*E," just gliding through the conspicuous consumption with the battalion of wheelchairs around me going every which way. Vegas is a triumph of the imagination over good taste and in terms of fantasy it out-Disneys Disney. There is the Statue of Liberty, thrusting somewhat incongruously out of the concrete and evoking the last scene of Planet of the Apes, a castle with a drawbridge…where you go to see strippers…and of course leopard skin as far as the eye can see. I think I love this crazy town more than Frank and Sammy did.

I went to Vegas with my dear high school friend Renee. I had told her that one of my regrets was never having seen the Grand Canyon, so she booked a helicopter tour and off we went to Vegas and over the amazing Grand Canyon.

But I'm getting ahead of myself. First, we went to see the Thunder from Down Under, an Australian strip show. I've never gone to a strip show before. I did hire a stripper for Wendy's baby shower when she had Tessa. He wore a diaper. It was great. But I haven't actually been to a club before. I had asked a friend…let’s just call him Bob….what I could bring back for him from Vegas, and he asked for a sweaty jockstrap from a male stripper. Now, my friends know that you don't just make that request of me and not expect to receive a sweaty jockstrap from a male stripper. Of course I'm going to do everything in my power to get it. Tragically, these strippers don't show penis. They just strip TO their jockstraps. And they don't sell souvenir jockstraps, which wouldn't be sweaty anyway. So I had to use my considerable charm and persuasive talents to leave the club with a sweaty jockstrap belonging to a beautiful Australian man named Donovan. I even got a lap dance thrown in. So all in all, I would say it was a good night. As far as the details go, what happens in Vegas stays in Vegas. Except of course for the jockstrap, which is now safely in the hands of its new owner.

If that scene didn’t take your breath away, let me tell you about the helicopter ride. If you've watched any episodes of "M*A*S*H," you know that helicopters aren't easy vehicles to get in and out of even when you're able-bodied. When you're in a wheelchair it's sheer insanity to even attempt it. So we did. And somehow Renee was able to get me up (sans army stretcher) in the cockpit (again) and then wheel the wheelchair back to a secure undisclosed location.

So, the Canyon, the Canyon. I don't know if there are poems about the Grand Canyon, but whether there are or not, I know I don't have the words to describe the scope, the magnitude, the awe-inspiring depth of that place. It blew my mind completely. The tour was comprised of Renee, myself and a bunch of Germans, so the narration was all in German with kind of bizarre music choices like "Home on the Range" and Top Gun’s "Highway to the Danger Zone" or, in German, Spitzenpistole mit Gefahrenzone. There's something about the German language that makes everything sound at once very serious and very funny. Likewise the music of Wagner (which was oddly omitted).

But the tour caught me by surprise at the end when during our descent, the corny soundtrack ended with Louis Armstrong singing "What a Wonderful World." It felt like, even in this tacky city with this Teutonic soundtrack, the world was conspiring to remind us all how lucky we are. How lucky I am, to get to have an experience like that, and to have friends like Renee and my friends Gord and Kim who pitched in financially to make the trip possible.

You know, there were so many trips I have taken in my life where I was surrounded by awe-inspiring moments and missed them, because I wanted the experience to be even more magical than it was. And I never got it. It wasn't that I'd picked the wrong spot or come at the wrong time. It was me looking in the wrong place for the wrong thing instead of looking at what was right in front of me. I'm really grateful that Renee would take all this time to fulfill a wish of an old friend. I'm really grateful that Gord and Kim would want to help her make that happen. And I'm also really grateful that I've learned over the years to stop, to rave, to look, to listen, and to see how very beautiful almost everything is.

As a dancer I was never Michael Jackson, but what do you expect? Those white guys can really dance. But what I lacked in precision, I made up for in enthusiasm. Often at an event, I would be the last person on the dance floor. One cast party I pulled a muscle in my neck, I was dancing with such enthusiasm. Now I’m in a wheelchair, and I’m still not Michael Jackson, but I’m pretty sure that I would beat the hell out of Christopher Reeve in a dance competition (especially now).

So last night I went to a fundraising event for ALS TDI, which was organized by the Reich family. I mentioned Corey Reich in the blog, Young Soldiers, from a couple of months back. They’re just the loveliest family you could imagine, and they’re getting close to the $1,000,000 mark for ALS fundraising.

It was a moving night. Corey was there, and a young lady named Megan, who is 25 and has familial ALS. I was just struck by what a grounded, composed, graceful, lovely young woman she was. Her mother had dealt with the death of her husband, and now the imminent death of her daughter. I can’t even imagine what it’s like for women like Linda, or like Wendy Reich, who have to endure this relentless assault on their babies.

As I was beginning to fade, Wendy said, “Come on! Come and dance!” So I said, “OK, but only if you come dance with me.” We danced to Prince singing “Kiss” and to the B-52’s “Love Shack,” and I was kind of thunderstruck. This woman, whose beautiful, beautiful young boy is not much older than my own son, and me, dancing. Life goes on. Joy goes on. Exuberance goes on in the face of the absolute worst thing you can imagine, like losing your child, or like losing every piece of you, bit by bit.

When Renee and I were in Vegas, the airline broke my motorized wheelchair. We made it to the hotel with Renee struggling with both of our bags while trying to push a wheelchair that was not intended to be pushed. We checked in. We stayed calm. Then the bellhop Sam said, “We have motorized wheelchairs here that you can rent.” And I started to cry, because I realized that moving forward in a chair is my last act of independence. I cannot feed myself. I cannot dress myself. I cannot get in and out of bed or onto the toilet by myself. But I can move in a chair, and the relief that that was not going to be taken away from me for the weekend was so great that I couldn’t stop the tears.

Even though I have so little left that I can do for myself, I feel like I need to get out there, put on my high heels and my little black dress, dance, laugh, and joke. I’m not the person with a tireless commitment to raising millions of dollars. I’m not like Mary Harrington, who, after her diagnosis, made several trips to New Orleans on relief missions. I am a joker and an entertainer, and a person that can find fun in almost anything. And it’s really important to me to show people that you can have fun and have this disease. But, it’s kind of humbling to pick joking as your contribution to the world when you’re surrounded by people who humble you with their endless capacity for giving.

I sat there at the table with my two nurses, Dallas and Bob, watched their eyes get moist on several occasions, and heard Bob talk about looking at the video and seeing a bunch of his patients all together outside the clinic and how that felt. And it dawned on me, that they don’t have any objective distance from us. They are risking having those difficult feelings, because they want to be fully engaged in the world, and that can be a painful thing. They are heroes. Not just them, but everybody at my clinic. And also Megan, and Corey, and Johnny, and all the people I’ve met with ALS, and all the family members and caregivers who have endured the loss of someone to this fucking disease. They amaze me.

I think about Warren Schiffer, who stayed by his wife’s side, stretched her for as much as two hours a day, took care of all of her needs, moved into the nursing home with her, took time off work and gave everything, because he wanted to. He wanted to be there with her. I think about his wife, who has since died, and her determination, along with his, to raise money for ALS research. And how someone far more advanced in her illness than me, along with her husband, would create a fundraising arm that would eventually raise almost $8,000,000. And I think about the fact that, after enduring a devastating loss, his impulse is to reach out to help other people. Like me.

If there is anything that I’ve learned from having this disease, it’s that people are capable of enormous good when put to the test. I have met people that blow my mind and only a few people have I encountered through this journey that have been dickwads. When I imagine the hearts of Warren, or the Reichs, or Megan and her mom, or a lot of the other great people I’ve met it’s like flying over the Grand Canyon and being awed by the depth and the scope.

Award-winning Blog

2009-08-20T19:23:00.000-07:00

Please check out my baby brother's award-winning blog at www.beliefnet.com. He has FINALLY given me the green light to share it with you. I will link him to this site soon. He is brilliant!!!

Universal Health Care Is Gonna Kill My Grandma!

2009-08-11T23:28:00.000-07:00

The other day I was trying to get a straw out of one of those take-out cups with the plastic lids - a task for which I no longer have the grip. I struggled and struggled and felt my throat getting tight because I couldn’t do this simple thing. Finally with a big lump in my throat, I said to Mac tersely “would you please get this out for me?” He very deliberately placed his hand over the straw as though gripping the hilt of a sword and in one deft movement pulled it out of the cup and over his head, and thrust it towards the ceiling as he said in a deep booming voice “Excalibur! I claim this straw in the name of the Britons!” Of course I completely forgot how frustrated I had been a few seconds earlier. Every day my boy cracks me up. He keeps me going. He is Wart and King Arthur – a kid who has been given a task that he didn’t ask for and didn’t believe he was up for but clearly he is.

Mac told me a statistic the other day that made my blood boil. Of those who are among the top one percent in patient expenditures (that would be me) fifty percent have their policies canceled. Meanwhile among those patients on whom the company makes a profit, less than one in a thousand get their policy canceled. I have a modest proposal: we allow that top one percent of people with serious illnesses who drain these companies of their massive profits, to man the firing squad and on the wrong side of the guns, we line up all the people who make these sick choices (get it? sick?) that favor profit over a basic human need. Then we allow those very sick, terminally sick, chronically sick people (not including me because my trigger finger isn’t strong enough) to shoot those creeps in the knee caps and then get up in their faces as they writhe in pain say, “Ouch, it’s a good thing you have comprehensive health care coverage, because that’s got to hurt” I recommend the patients wait awhile before calling the ambulance. What – too much?

You know, honestly, although I hate the health care system in this silly country more than pretty much anything I hate in the world, I’m not sure the U.S. is ready for a single payer system. I know that sounds negative, but I have been on Medicare for under a year and if that is the best the government can do, I got to tell ya, we are in big trouble folks. I pay upwards of $800 a month, which includes my drugs, and I’m on the phone with people whose comprehension (with some rare and very friendly exceptions) is marginal at best and who are generally indifferent to the fact that they are talking to someone with a debilitating and incurable fatal illness. I deal with poorly worded letters that Edith and I (who as she puts it are “college educated and then some”) can barely make sense of. It’s staggering. And there is no accountability. There is no supervisor to complain to. You can’t call the same person back because they are part of this massive clearinghouse. So even though I think my Canadian friends and relatives have their heads in the sand when they complain about their own health care system and that every non-impoverished-third -world country has a better health care system than the U.S., I don’t hold out a lot of hope. I know that sounds negative and I know I’m going to get a lot of hopeful blog comments and I will delight in them - I will. I really do hope I am wrong. Every day I hope that we can have a health care system in this country like every other fucking country but I’m not so sure it’s going to happen folks. 46% of healthcare costs in this country are ALREADY paid by taxpayers and Americans don’t want socialized medicine? That is some special kind of stupid. So while Obama holds Town Hall meetings that look like a scene from Deliverance, people like me end up relying on the generosity of others and lucky for me there are a lot of generous people in my life.

On Friday I picked up my new van, which was totally free! I was on a waiting list through the Muscular Dystrophy Association and sure enough my name came up and a lovely lady whose husband had died of ALS, drove this van from Mount Shasta to Sacramento to deliver it to me. It is a 1986 Ford whose prior sole purpose, I am sure was to be a shag-mobile in which some ardent Van Halen could get laid. It has plush red velveteen seats, a fold out bed in the back, wood paneling and a custom-built shellacked cassette holder. I shit you not. It is like walking into a time machine. Of course I’m going to put that mud flap girl onto the handicap guy’s wheel chair and write on it “If this van is a rockin, don’t come a knockin!” This may somewhat diminish my pool of suburban mom drivers, but it will be worth it.

In addition to the van, the Forbes Norris Clinic is loaning me a wheel chair for my shower and Medicare is paying for the rental of a hospital bed. It has become too difficult for me to negotiate my queen size bed and a little precarious for caregivers to move me from wheelchair to shower bench, hence the durable medical loot. That brings this week’s bounty to approximately $25,000 worth of swag!

I count my self as somebody very blessed despite what I have had to deal with. This week Kaila and I went to Bodega Bay. I don’t think that I have spent any blog time telling you about Kaila. She is a wonderful violinist and composer and the wonderful mother of 10 year-old Lucy. Kaila has organized fundraisers for me, done fundraisers for me, shopped for me, rubbed my feet, cooked for me, dressed me, donated money to me…I can’t really list all the ways she has been an amazing friend to me and now an all-paid vacation as well. The highlight of the trip was the beach she found that lent out dune buggy style wheelchairs. And let me tell you something; I got to get me one of those!!! For the first time in over a year I was all the way down at the water’s edge. And just to be near crashing waves was the most miraculous feeling. I can’t even begin to describe it. The ocean was turquoise blue and the sun was glinting off of it. You could hear seagulls on the rocks jutting out from the water. And then came the waves. Wave number one and two were, from my perspective quite benign, though they did get Kaila’s feet very wet. Wave number three, however, picked the wheelchair all the way up and took it in the direction of the sea. I could feel myself tilting backwards a bit and I realized that we were no longer in control. Before things got too dramatic, a couple of guys came running to our aid and helped Kaila pull me away from the waves. It was quite an ordeal for everyone but me—I was just giddy about being in the water and having myself a little adventure.

On the way back from the hijinx with Kaila, we stopped at the Forbes-Norris Clinic where Mac and I got interviewed for the Jerry Lewis telethon. As you may know, I’m one of Jerry’s kids and Mac is therefore one of Jerry’s grandkids. The producer asked me about my hopes and dreams and I told her I didn’t have any - that my life was great just the way it is. I mean I had just come back from two days at the beach with a treasured friend who piled love on me and took me to the water’s edge. Who needs hopes and dreams? I know she wanted me to say I hoped for a cure for ALS but one day there will be a cure - whether I hope for it or not - and hoping for it won’t make it come any faster. Afterwards I wished that I had said that my hopes and dreams are that my son has the same kind of experience with love and friendship that I have had. I hope that he is on both the giving and the receiving end of the kind of love I’ve experienced . Plus, my hope and dream, as I have mentioned before, is that all the douche bags that have heretofore made decisions about health care will have their knee caps blown out and live in pain in a wheelchair. Isn’t that a beautiful thought? Finally, my hopes and dreams are that all the many amazing people in my life (you know who you are) can fully comprehend this great thing they have been a part of. This web of care and love is astonishing to me and I don’t know if my loved ones realize how special they are, not just to me.

I wouldn’t wish this disease on anyone, but it is really wonderful to have learned through this experience how much goodness there is in the world. I received a correspondence from a man who’s son has ALS and he said it is hard for him to see any silver lining in all of this except for the wonderful people that he had met and I heartily concur. And I have a shameful confession to make. When in the past a good friend has been seriously sick, the help I have given them is a minuscule drop in the bucket compared to the oceans of help that has been given to me. I always had good intentions but I did not do for Edith, Moira, Christina or Stephanie what they have done for me. They along with my other friends have taught me so much about the capacity we all have for doing good in the world. And it’s too late for me to help them back in any physical way, but I can at least tell all of you about the wonderful, wonderful humans that I know. We get tested at times, Moira said to me, and we get to reveal ourselves to ourselves. The people that I love have shown themselves to me and who they are is nothing short of staggering.

And then there’s that boy who can pull a sword from a paper cup, who in the biggest test of his life, shows me every day what courage is.

Check it out - 2 Blogs in 1 Week!

2009-07-22T14:10:00.000-07:00

I thought I would be embarrassed the other day. I was wheeling around downtown Berkeley and suddenly and inexplicably I started to cry and I was seriously considering being embarrassed, but Harry Potter’s cloak of invisibility has nothing on a wheelchair. I swear, it’s amazing how nobody notices you if you’re a person alone in a wheelchair. So I just relaxed and let myself cry. It was a nice feeling.

One of the things that makes me luckier than most people is that I have a shitty memory for certain things. Like today, I couldn’t get my jeans button unbuttoned, and I was alone and I didn’t know how I was going to get my pants off, and I was trying to remember if I was ever able to use my left hand to unbutton my jeans, like ever in my life. And I could not visualize unbuttoning my jeans one-handed. I don’t know if that means that people don’t unbutton their jeans left-handed, or if I’ve just forgotten how to do these things so thoroughly. There are all kinds of things that I’ve forgotten, as though I was never able to do them, and I think that’s really a lucky thing. I don’t spend a lot of time bemoaning things that I’ve lost. OK, I spend a little time, but not that much.

On another note: I’m not one to brag, but I can now wipe my own ass. Just saying.

Poor Moira was typing blogs for me. She is so genteel and I am…not. I showed her my business card which I ordered to replace the one that said : Carla Zilbersmith – Good Singer. It made me too sad to give that one out so I got some saying: Carla Zilbersmith - Dying Woman. Moira who is far subtler than I said, “It should say Carla Zilbersmith – Femme Fatale.” Of course it should. That’s better on so many levels.

Moira is from another era. She arrived here in a time machine and I can only imagine that she switched places with some hapless soul born in 1962 who is stuck in the early 1900s, wondering when Twitter will be invented, why no one but Jack the Ripper will fuck her and what people have against the terms “douche bag” and “cock block.” Meanwhile, Moira wanders around the newsroom of her paper, armed only with a parasol, exclaiming “oh my” (and I’m pretty sure I heard a “my word”) while she wonders why her colleagues call her “dainty.”

I went to my friend Alison’s wedding last weekend, and she was a radiant and beautiful bride. Her hair looked great, her dress looked lovely, and I said a silent prayer of thanks to the gods that she heeded my advice and gotten a good bra, because it really made all the difference in the world to the dress. She has some big, beautiful girls and they deserve to be treated right! Her now-husband’s quiet, tender devotion to Alison made me cry. It was really lovely. [If you're reading this blog a second time, I have deleted an amusing story, in deference to a dear friend of mine. I don't regret telling the story, because that's what I do, but my friendship with this lovely woman is more important.]

Unfortunately I wasn’t able to handle staying for the wedding reception. I marvel at the fact that I, former wild woman/extrovert/party animal/big crowd lover, am almost paralyzed with anxiety when I’m in a big crowd. It becomes almost impossible to breathe. I start shaking. It’s crazy. But that’s how it is. And I have not got a bad enough memory to remember being the person that reveled in parties.

I was telling Barbara today that words have defined me -- either the written word or the spoken word -- for my entire life, and words are slowly being taken away from me. First I couldn’t act out words, then I couldn’t sing them. It’s harder and harder to type them, and late in the afternoon, difficult for people to understand me when I speak them. But I can still listen to them. And I’m hoping that I can reshape the way that I’m friends with people, so that they can feel comfortable just offering me their words or reading the words of others to me and not feel weird if I don’t reciprocate. Maybe I’ve talked so much in my lifetime that I used up all my words. (Moira, who is typing this, just said to me, “You don’t talk as much as some people.” Which could be interpreted as “You don’t smell as bad as some people.” OK. I concede that while I don’t hold the land speed record for talking, I love to talk. A whole fucking lot.)

I wonder if the reason I was crying as I wheeled around Berkeley was that I saw all the college students and I saw all the school supplies being sold, and I was reminded that Mac will be leaving soon. I fucking adore him. I know every parent goes through this, or, you know, most parents go through this (some parents probably wish they could go through this when their 40-year-old kids don’t move out, you know who you are, 40 yr old slacker.). But this feels a little more permanent. Mac and I will have our occasional weekends together and maybe a summer together, but not enough.

At least I will have left him lots and lots of words.

Copy That

2009-07-18T23:01:00.000-07:00

My son Mac and I are devotees of the TV show “24.” We don’t have an actual television, so we rent the show on Netflix and we’ve watched it for the last year, one season at a time. Somewhere around the third season, we realized that the show was not, as we had assumed, a guilty pleasure, but a compelling show chock-full of moral nuance and complexity. Occasionally the writing can be a little bit lazy, but the acting is really good, and Jack Bauer, the antihero (who is, I feel compelled to add, played by Canadian actor Keifer Sutherland), reflects the evolving zeitgeist of America for the last eight or nine years. All the questions we’ve asked ourselves after 9/11 about due process, civil liberties, and that delicate balance between protecting our citizens and honoring the law are interesting questions to ask. As a result, Mac and I have been thoroughly hooked.

So last night, we were on the final disk of Season 7. It’s not outside the realm of possibility that I will die before Netflix releases Season 8. And so this is probably our last season of watching the show. Mac had mentioned to me earlier that this was our final season and we both did our best not to cry. So there we were, watching the second to the last episode, and Jack Bauer’s daughter Kim was now a mother and she’d named her first-born daughter Terry, after her dead mother who was killed in Season 1. And Maclen says, “What an idiot. Why’d she name her kid after her mom? She needs to move on, It’s been six seasons already.” I responded in a calm, measured way, as any mother would. I said, “You are totally full of shit. What the fuck are you talking about? That’s a wonderful gesture.” And Mac says, “She needs to move on. She can’t spend her whole life grieving her mother.” And I said, “Naming the kid after the mother is a way for her to move on.” We left it at that, but I could tell he was utterly unconvinced.

Finally, we were about to begin the final episode. Episode 24 of Season 7. Before we began I told Mac to pause the DVD player and I said to him, “Sir, it has been an honor to serve with you these past seven seasons. I’m proud to have watched this show with you.” And Mac responded, “As am I, sir. As am I.” And we smiled at each other and watched our very last “24” episode. I know, I know, it's a FOX show with lots of explosions, but this was a heavy event for me.

Much to my disappointment, despite all promises implied ( SPOILER ALERT. DO NOT CONTINUE READING IF YOU WANT TO BE SURPRISED BY THE ENDING. ALSO DO NOT CONTINUE READING THIS SENTENCE IF YOU DON’T WANT TO KNOW THAT TONY SOPRANO IS DEAD. . . . WHOOPS!) Jack Bauer was not killed off at the very end of the season, even though he had a fatal and incurable illness. At the end of the season, his daughter volunteered her body for an experimental and never-been-proven-successful stem cell procedure. So you know he’s going to come back for the final season. I was really disappointed in this plot cop-out, and Mac said to me, “What do you have against last-minute experimental stem cells saving the day and making the main character survive a fatal and incurable illness?” And I had to admit he had a point.

So as I was getting ready for bed, he was helping me as he always does, pulling the blankets over me, putting my breathing machine on for me and right before I said goodnight to him I looked him in the eye and I said, “Mac, after I’m dead, if you have a daughter, it would mean so much to me if you would call her . . . Terry.” And this big grin and one sort of staccato guffaw burst out of Mac and he leaned over himself and slapped his thigh. His eyes beam when he laughs hard, just like they did when he was 3. And he said, “Wow, that will be a tough one to explain to my wife. We have to call her Terry for my mom…Carla”

As I told Edith later, making Mac laugh is like ringing the bell with a giant hammer at the state fair.

Fundraiser for yours truly

2009-07-14T22:21:00.000-07:00

The following message is from my dear friend and a wonderful performer, W. Allen Taylor:

If you are free on Sunday, 7/19 between 3-6pm, please join me for a special musical fundraiser at Anna's Jazz Island. I'll be singing jazz standards and raising money for my good friend and former colleague, Carla Zilbersmith, who is currently battling Amyotrophic Lateral Sclerosis or ALS (Lou Gehrig's Disease).

The band will feature some of the bay area's finest musicians and if you like your jazz straight-ahead, you won't be disappointed...they will definitely be swinging! The suggested donation for the afternoon is $25 (anything above will be greatly appreciated but no one will be turned away for lack of funds).

Anna's Jazz Island is located in downtown Berkeley at 2120 Allston Way (just east of Shattuck Ave.). The best parking garage is on Allston Way between Shattuck and Milvia Street (next block west), although street parking is available if you have good parking karma.

For more information, check out the website of this premiere venue for jazz at www.annasjazzisland.com. Please feel free to forward this info to anyone who loves this music and/or would love to support Carla.

Hope to see you there.
Peace and love,
Allen

Here's me and Allen in a pre-wheelchair publicity photo. Damn, we're good lookin'!:

Young Soldiers

2009-07-11T11:21:00.000-07:00

If you’ve been following this blog, or if you know me, you know that I never say that ALS is unfair. And you know that I’ve said before that I don’t want to be the person in the position of deciding who gets to live, who gets to die, who suffers, and who has a happy life and I still believe that with respect to me. But on the 4th of July, for the first time, I experienced a profound sense of the unfairness of ALS when I met Corey and Johnny, two absolutely gorgeous young teenage boys, both of whom have ALS. Bobby Abernathy, my favorite cowboy, introduced me first to Johnny’s family. I wasn’t sure which one of them had ALS, except for the very slight shift in the tone of Bobby’s voice when he introduced Johnny. So I asked Johnny, “Are you the one with ALS?” and he responded, “Yeah,” and I said “Well, that’s bullshit!” Bobby quickly said, “You know, Carla uses some colorful language, you’ll have to excuse her.” Johnny and his mom simply said something like, “No, I think bullshit’s a good word.” I spoke briefly to his parents and his dad said, “It’s not fair,” and all of a sudden I realized that my plan of accepting the randomness of ALS had stopped where these 2 boys’ lives began.

Though just as sweet, Corey was a vivid contrast to the quiet Johnny; cheerful, outgoing, willing to stand toe-to-toe with this outrageous middle-aged woman, as he showed me his cane made out of a bull’s penis.

I felt like I was watching young men go off to war.

It has always seemed so stupid to me that we send young, gorgeous people off to die for us when really we should send old people, who’ve already had a chance at life. Also, old people are a lot meaner and crankier in general than young people (yeah, I said it!). Just try to get in front of an old person in the line-up at the grocery store. They will fucking cut you! Those old people can be mean and probably much better at killing the enemy. Plus, they don’t contribute as much to society. They complain all the time about their aches and pains – hell, they could probably kill the enemy just by explaining what’s going on with their joints and I dare you to blog comment without sounding cranky, old people. Simmer down and take your irony supplements.

But I digress as always.

These boys were like beautiful young soldiers and it was all I could do to hold it together. I just tried to do my Tourettes-like joking so I wouldn’t just burst into tears in one of those awkward middle-aged moments that makes teen boys cringe. It made me think of the Archibald MacLeish poem, The Young Dead Soldiers:

“The young dead soldiers do not speak....
They have a silence that speaks for them at night and when the clock counts.
They say: We were young. We have died. Remember us. ….
They say: Our deaths are not ours; they are yours; they will mean what you make them…..
They say: We leave you our deaths. Give them their meaning.
We were young, they say. We have died. Remember us.”

Our deaths are not ours; they are yours. I looked at their parents. I just couldn’t imagine what they were going through and I looked over at my dad and I thought about all those times he wished that he could take the ALS instead of me, and I thought about my son and how easy it would be for me to take a bullet for him or jump in front of a big truck and push him out of the way. I mean really easy – a no-brainer. I wanted to take on some weight for these boys and their families. I wanted to take their ALS from them, but of course I already have it. That may sound like bullshit, but it’s not.

When people talk about their sadness about the death of a young person, they tend to talk about the person they might have become. I don’t. Their loss is sad enough in real time. I don’t need to think about what these two kids might have done, I grieve for who they are right now. There’s nothing to me more beautiful than someone in their teens or early twenties. They were always my favorite age to teach, because they are a journal with mostly blank pages, a walking, talking action adventure, a lesson in sincerity and integrity. That’s what I mourn.

I had a dream the other night about Mac’s wedding. Kathy, Edith, Wendy & Kris were in a circle with him and they were all dancing the mothers- dance-with-grooms dance. When I woke up my face was all wet and my tears were still warm. I don’t really know what is harder: to leave a beautiful boy on his own or to watch him go off to fight a battle that is too many miles away from you. I don’t know how any of this can ever be okay for those 3 young men.

Edith and I went ring shopping yesterday. I’ve never had a really nice piece of jewelry in my life. If I’d had a nice wedding ring, I probably wouldn’t have pitched it into the Bay, I would have just hocked it. But I didn’t. So I got this idea that I really wanted Mac to have a beautiful engagement ring to give to some one, someday and be able to say, “This was my Mom’s.” For some reason, it makes me really happy to think about that. I spent money that I have no business spending and that I should be saving up for the miserable fucking rainy days ahead, but fuck it. If I can’t dance with him at his wedding, at least a part of me will be there.

P.S. If my daughter-in-law is reading this in years to come, it’s okay if you hate the ring and want to get another one.

funny blog by Ezra Fox

2009-07-09T09:15:00.000-07:00

http://ezrafox.blogspot.com/2009/07/jerks-on-america-day.html

Dear Previous Winners of "Survivor": You are all Pussies.

2009-07-02T09:46:00.000-07:00

Do you remember the part in the book, “Tuesdays with Morrie” where Mitch Albom wipes his former teacher’s ass after he takes a poop? You don’t? Me neither. I want my money back, ALS!

I was with Jamie the other night, (my former student/ now caregiver) and thinking to myself how each thing that I’ve had to say goodbye to - walking, singing, acting, feeding myself - each one was devastating in its own way, but afterwards I’d think, ‘look, I’m still standing in the ring after all this.’ But when a former student wipes my ass, I have to say that I’m hanging on the ropes, looking over to Burgess Meredith, and imploring him to throw in the towel. “Come on Mick, give me a break!! “ But the towel does not get thrown in. “Oh, c’mon, people! What’s a girl gotta do to get a towel up in this bitch?”

Wendy thought that I wouldn’t write this in the blog because it’s TMI (too much information). You’d think that after 17 years, she would have figured out that TMI barely exists for me!

So yeah, the last week or two, I had a terrible cold, then my caregiver (I’m not saying which one) stepped on my thumb and now I’m wearing a cast that covers my hand and wrist. As a result I cannot do the last few things that I was able to do, because she had the temerity to step on my good hand rather than my bad one! As I told Kris: everyone tells you about how a tennis serve or a free throw is “all in the wrist” but they never tell you the wrist bend is integral to proper butt maintenance. Well, I’m here to tell you that the same tenet applies to wiping. It’s all in the wrist, baby.

Sometimes I just want so hard to believe in god so I can scream “Really God? Really? Now this shit??? Do I look like fucking Chevy Chase? This is not National Lampoon Vacation 12 – a movie series by the way that seriously calls Your existence into question!” And then god (who is sooo arrogant) would say “Clearly the Vacation movies are too subtle for you, Philistine, now stifle or I’ll really give you something to bitch about.”

So I’m going through a lot of my stuff, because I want to make dividing things less complicated for my friends and family and Mac when I die. I have everything labeled so that there are no questions of claim, because just saying “paintings” in the will is a little too vague.

So when I was talking over all of this with Wendy, she said to me “I don’t want any of that stuff, I just want your glasses…” And the tears rushed to my eyes and she said, “because I want to see the world the way you do.” And of course much crying and hugging ensued. When I related that story to Jamie later that night, she, in her own inimitable way, responded “Tell her it doesn’t work that way, things will just look all blurry”. Leave it to somebody young to put everything into perspective. But it’s funny, when I go through all this stuff, it becomes clearer and clearer to me that none of this is going to matter at all to me when I’m gone. So I’m telling everybody “just pretend to humor me and when I’m dead, do whatever the fuck you want with my shit”.

Somehow there’s some comfort in settling my affairs and organizing everything. Probably I’m thinking about this because I’m about to undergo a major loss. Mac will be going away to UCSD for college. The first major ending in my adult life…oh yeah, not counting my marriage…I keep forgetting about that guy.

But I get comfort in taking pictures of pieces of jewelry that I want to save for Mac or making lists of things that I need to take care of before I die. Kind of like when I used to need to tidy up my apartment before I could sit down to write a play. Maybe getting my affairs in order is the apartment, and the play is whatever journey I have to go on next.

My brother wrote this wonderful piece the other day, which I wish I could share with you, but if I am “TMI” he’s “Don’t Ask Don’t Tell”. Anyway, he talked about his restlessness and his need to go from Palm Pre to computer email to cell phone, and how one is not going to find god on that kind of restless technological bender that we’ve all been on. And in the meantime, maybe god is trying to find us, but we’re too busy running around to be found. And It resonated so much for me, because amidst all these hits I’m taking, while I’m lying against the ropes like Rocky Balboa (played by Chevy Chase), there are still these moments of indescribable happiness; like sitting in the garden today and hearing a summer camp full of kids walk by, and how the din of their excitement and yells drowned out everything- the birds chirping in the trees, the whoosh of the water fountain in the backyard, the plums falling onto the ground, and it was a magical moment, so simple and so wonderful. Or watching Mayra up in the tallest branches of the plum tree, shaking it and wondering if she was going to fall and break her neck, but at the same time, being so delighted by this young woman climbing to the top of this tree. And then the hummingbirds. I never imagined such a miraculous thing as living in a place where hummingbirds visit me everyday. It’s magical, this place, and I’ve been so busy running around all my life, until now, the hummingbirds couldn’t find me. But like my brother says, we can’t be found until we can be still,

So here I am, battered and bruised and still life never ever ceases to amaze me. I’ve been going through this over two years (from the 1st fall in May 07) and I’m just stunned at how things can be so horrible and so wonderful at the same time.

It’s like life is The Rocky Horror Picture Show.

Always Look On The Bright Side of Life

2009-06-30T18:50:00.001-07:00

'nuf said.

Comments

2009-06-27T09:36:00.000-07:00

Someone who reads this blog recently asked me what I think about the blog comments. Now you probably noticed that I don’t comment on comments very often and you probably noticed that on certain blogs there are a large volume of comments. It’s really just too hard for me to comment on them all and although a lot of sites on the internet are intended as a cyber dialogue, this one is really more of a monologue with occasional responses and that’s just how it has to be.

Having said that, I have to tell you that I get really excited every time I see that someone has sent in a comment. And I love getting your comments. I love your kindness and unforced compassion. I love your insights. I love the way you address one another. I love the way you share things about your lives and struggles. In short, the blog comments are an important part of my life, and so you, Muselings, have become part of my wonderful circle of loving friends, whether I know you or not.

A couple of other things about the blog comments -- sometimes people ask me why their comment didn’t get published and I don’t usually feel like I need to answer that because the obvious answer is: it’s my blog, deal with it, but just to let you know, I made a conscious decision to make this blog a place where I don’t back off from talking about the things that scare me or cause me grief but at the same time, I don’t want it to become a negative place. If people want to say bad shit about other people, they can go to yelp.com. I, however, really don’t want that on my blog. Believe me, there are a couple of people in my life –well, at least one…let’s just say there’s not enough band width to go there. So I don’t. This blog is a special place for me and I don’t want to turn it into something ugly.

Another thing about your comments – sometimes people write such complimentary things about me that I get a little scared because I feel like Harold Hill in The Music Man and people are following me as my 76 trombones lead the big parade… of bullshit. Trouble in Blogger City. When people seem to look at me as something bigger than I am, better than I am, I really do feel like a con artist and that Shaggy and Velma and the rest of the Scooby-Doo Gang are going to tear off my mask and reveal me for the average, petty, normal person that I am and I’m going to have to say, “Yeah, and I could’ve gotten away with it, too if it weren’t for you pesky Muselings and your dog.”

Some of this is my insecurity and some of it is because I only reveal one dimension of myself on this blog. You see, this is not an entirely unexpurgated version of my thoughts. I try really hard to be honest but I also leave out the stuff that I think would be hurtful to any individuals (except for Dr. Evan Collier and Julie the receptionist. I’ve made it clear that they’re douche-bags. Or rather, he’s a douche-bag, and she’s a gate-keeping bridge troll,. I’m really proud of that insult.) But other than that, I try as hard as I can to not out the douche-bags in my life, including me because I can be a shit-sack sometimes myself. And if you don’t believe me, just ask my son.

Now I’m rambling. What else do I feel about the blog comments? I feel like I’ve touched a nerve. I’ve hit on a place that I thought was uniquely mine -- my need to find meaning and beauty amidst my suffering, but I realize now that it’s the human condition. We all want to find that. We all want to know that while our time on this earth, may not have a definable purpose, it has moments of grace. And I’m really proud that even though I’m dealing with a lot, I can still offer something to people. So when I say the blog is my lifeline, it’s not even so much about what I write. It’s about knowing that what I write is being heard and that hearing it is helpful to people. I can’t express to you how great a feeling that is.

The internet and cell phones and Facebook and texting and Twitter (the aptly named Twitter, for twits with nothing better to do but boil the complexity of their life into 140 characters – and yes, I know I’ll regret those words when I’m typing with my fucking chin…coming soon!) .All of these things have an alienating quality to me because the more we use them, the more we’re insulated from our own experience with other people. I remember when I was a busy person, feeling a bit of disappointment when I would get an actual person on the phone because I would have to go through the niceties of getting caught up rather than give them “just the facts m’am”. And so we’ve all become this culture of Jack Webb/Joe Fridays, wanting just the facts. What a major Drag...net.

Anyway, I find it amazing that what I think of as alienating has become a public place where we can all meet and connect with each other. It’s just astonishing to me. Even as I draw closer and closer to eschewing electronic forms of communication almost completely and just trying to hug and hold hands and snuggle with people instead; the blog is there and it’s real and it means a lot to me. You mean a lot to me. So for all the times you’ve written and encouraged me, for all the times you’ve boosted me, for all the times you’ve courageously shared something painful that’s happening in your life, I thank you from the bottom of my heart. If you’ve done nothing else, you’ve buoyed me in a difficult time and you’ve left something utterly amazing - in the real sense of the word amazing, - through which my son can remember me. Imagine him looking at your comments or showing them to his children years from now.

Can you think of a greater gift?

And you’ve given that to me.

So I can say without a trace of disingenuousness, I really love you all.

How Do You Spell Love?

2009-06-14T16:12:00.000-07:00

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.

A Poem

2009-06-09T10:15:00.000-07:00

The Farewell
by
Edward Field

They say the ice will hold
so there I go,
forced to believe them by my act of trusting people,
stepping out on it,

and naturally it gaps open
and I, forced to carry on coolly
by my act of being imperturbable,
slide erectly into the water wearing my captain's helmet,
waving to the shore with a sad smile,
"Goodbye my darlings, goodbye dear one,"
as the ice meets again over my head with a click.

This Friday's To-do List

2009-05-31T10:47:00.000-07:00

Things that can't really be described:

My friends dressed in prom dresses, drinking tequila well before the sun is over the yard arm, holding tight to my torso and grunting to keep me vertical so I can stick my head and chest out of a limo skylight and shout "Woohoo!"

Watching them dance and how sexy they suddenly are, the wind blowing their dresses and blowing the years off of them until they are the ages of their sons and daughters.

Holding my Wendy as she cries and says "I'm having trouble with you not being out there with us."

Matt arranging for a Johnny Depp look-alike to come to my house and how I can't walk but I can make a Johnny Depp look-alike blush.

Sofia organizing a group of loved ones to stand in a circle and sing "What a Wonderful World."

A baby watching, wide-eyed, as beautiful young women dance, ignoring gravity while sparks of brilliant orange ignite all around them, then die.

Being put to bed with a kiss.

Damn/Dam

2009-05-28T12:33:00.000-07:00

I'm sitting here alone in my bed, in the dark talking into this dictation machine and trying to decide whether to be happy that I'm still able to be alone or to be scared that I'm all alone. I fell the other morning around six, banged my knees and knocked my face up a little bit . The bruises will fade but not the reality that it's not safe to be alone. After I fell, I couldn't get back up off the floor, which - more than the falling - was really the hard part.

It's a blow. It means the end of independence is coming.

But I'm lucky because I can choose how to handle these things. When I read the blog comment from the person who's written two books with their chin, I thought "Man I am a whiner! I decided to dwell on the obstacles to writing this blog, meanwhile, this person is writing books with their chin....cheerfully!!! There's always somebody that's worse off than you. And you can feel bad if you really want, but face it: there will always be somebody worse off than you."

So probably about 50 percent of the time or more now, it's just such an effort to bring a fork up to my mouth. The food falls off of it and falls on the floor and I wheel over it and squish it or it's a big mess and my pants are covered with food and either way, my arm is so tired from lifting the damned fork, and blabbity blah blah, that I've finally given in and I'm getting people to feed me. As I told Natta, this is both horrible and beautiful. It's horrible to know you're that dependent on people, that defenseless, that you find it really hard to feed yourself. But it's beautiful because every morsel that someone puts in your mouth feels like love.

I had time today with Edith and Wendy and it was so precious. And I thought: a small number of my friends have really fucked it up for everyone else. Those damned do-gooders! Basically, all of my friends do so much for me and they're all so kind and so wonderful, but I can't grade on a curve, because perceptions are bound to be skewed. There are a couple of my friends that just go so far out of their way, spend so much money on me, go so far beyond the extra mile and anticipate things that I never even realized I needed, it feels like other friends who merely display remarkable kindness, generosity and California king-sized hearts don't get lauded in this blog as much as they would/should otherwise. It's true. So I want to go on record right here and now that I'm so grateful to all of you whether you're named on this blog or not!!! A gazillion thanks!

One of my kind friends, Bryan, has taken 1000s of beautiful photos of me over the years and put hours of work into my various cds. He is working on a remarkable project to raise $5000 to rebuild a dam in a small village in Cambodia. He has only 3 weeks left before he returns to the village to oversee the work. For more info see his website, it will break your heart and inspire you to help. i personally vouch for Bryan ( we go back almost 14 years) and hope you can help him with this great work. Visit:
http://web.me.com/bryanjohnhendon/bryan_john_hendon_photography/Cambodia_Dam_Project_2009.html

sneak preview of world's saddest song

2009-05-24T20:32:00.000-07:00

I'm almost finished work on two, yes Muselings, TWO new cds one of which I'll release this summer, the other at the end of the year. Here's a teaser - it's a song I wrote to address the need for an ALS song that was neither uplifting nor encouraging. Someone had to do it. I think Edith took the photo.

The Rottenest Bird

2009-05-19T23:54:00.001-07:00

The following blog is typed by Molly on her 2nd to last day as my accomplice. She will be missed.

Now to the blog, which will be far less poetic now that I'm speaking it instead of writing it. (Thanks for the cool tool, Edith!)

It's very rare for my son to make me cry. Ok that's bullshit, he actually makes me cry all the time. But it's very rare for my son to make me cry telling me something about Dick Cheney, because Dick Cheney to me was one of the more comic-like characters in the world. Earlier today I was likening him to "The Penguin" from Batman. Doesn't he seem, with his sneer and his malevolent voice and his undisclosed locations, to be somebody like a super evil genius from a comic book? Well maybe not super evil genius but a super evil "evil guy". "Great quivering jellyfish, Mr.President!"

Anyway, Mac and I were sequestered in the back room while Lisa was interviewed by John Zaritsky, who's doing a documentary about me right now, and in order not to make any noise, Mac wrote me a note saying that Seymor Hersh has disclosed that Dick Cheney had ordered the assassinations of world leaders including Benazir Bhutto. Now this makes it even more comicbook-y, because there's never been ( well at least until Barack Obama) a leader as hot as Benazir Bhutto. Sorry Pierre Trudeau, you didn't make the cut. I could just imagine evil henchmen surrounding the beautiful Bhutto, who had the temerity to say publicly that Osama bin Laden was dead, so of course she had to go.

Here is footage of Cheney being exposed:

http://www.youtube.com/watch?v=fdQME2YYG44

Now, I'm making light of this and being kind of glib, but it really did made me cry, because Muselings, we lived for 8 years under an administration that makes the TV show, 24, seem plausible and not at all over the top, except we don't have Kiefer Sutherland to kick...er...head butt...some ass. How is it possible that we did nothing when we knew - come on, deep down we knew - these guys were complete unchecked evil? Where was our coup? And here's what I think the problem is: we are the most comfortable nation on earth. We are the bean bag chair of the universe. I don't understand how we've come to be so entitled, but we are.

Case in point: Wendy and I were on our way to Boston and people coming off the previous Jetblue flight were apoplectic about the fact that the TVs hadn't been working. Now, I don't know about you, but I would think that since there are only 2 airlines that even have TV ( not counting Air Force 1 of course) why would you expect a TV to be working, and why would you be asking for your money back because you didn't have a TV? And why would you step in front of a woman in a wheelchair who's trying to gate check her chair and get carried onto the plane to complain about the fact that you didn't get to see "The View"? I consider it great luck that I don't get to see "The View"!

But that's just me.

Louis C.K. does this great bit which you can Youtube, (and by the way, people older than 50, Youtube is a verb, which I will conjugate for you now: I Youtube, you Youtube, we youtubed. Here it is in a sentence: Let's get baked and Youtube the footage of O.J. riding the white Bronco hella slow... ) anyway, he does this bit called "Everything is Amazing and Nobody is Happy." I strongly urge you to Youtube it because the central theme is that we have everything we need for happiness and we are still miserable about stupid shit. So it doesn't surprise me that we would not have a coup in this country during the Bush administration because we are too comfortable, we are too happy with our conspicuous consumption to give a shit about anything besides what's on TV, what stuff we're gonna buy that day, of whether our latte is nonfat or low fat or fat fat. I'm also surprised at people who order nonfat with a fucking doughnut. Are you people high?? For people a nation weaned on nonfat food, we are the fattest people in the world.

But anyway, Mac and I have been busy filming away on this documentary, and although it is the most exhausting thing I've ever done, its really really fun. The team is great; Ed, Luis, David, Montana and of course, John, the director. It's both deeply moving to revisit these - let's face it - pretty heavy moments of my past and also kind of comforting to see how far I've come in accepting semi-trailers of life-dung and to see what an amazing person Mac has turned into over this last year and a half or whatever the hell its been. I lose track of it, which is also a good sign I think.

We'll be filming more over the next couple of weeks and well see what transpires. And I only sort of mean it about trailers of life dung - my friends have helped me out so much they should claim me on their taxes, my dad pays my substantial rent every month and now my mom is buying me a van! Stay tuned in the very near future for stories of adventures of Carla tripped out on Scooby snacks driving around in the Mystery Machine!

Shotgun!

No, seriously - does anyone have a shotgun?

Just kidding.

Dodgeball

2009-05-09T16:30:00.000-07:00

Hello out there! I miss you.

Lately the world has been shrinking and expanding, shrinking and expanding at such alarming speed, I can’t seem to keep up. Change is being hurled at me like some sort of existential dodge ball game and I feel like the fat kid with coke bottle glasses who can’t move quickly enough to avoid the onslaught.

Life has me caught in its’ cross hairs.

My back has been out which made my trip to Boston a challenge. I was taking a slightly watered down version of the Heath Ledger cocktail, which didn’t ease the pain at all, but it made me not give a shit.

I played with my 4 and 2 year old niece and nephew and I’m not sure if I was having booze and drug induced hallucinations or if I really did play tag and hide and go seek with them hiding naked in the sofa, their two adorable bare asses sticking out from the cushions. Must have been the drugs.

In case I don’t write about the trip, I need to say that Wendy took me and she was on duty 24 hours a day, affording me the energy to hang with Jason, Allison and the kids. My friends are the main reason my life has been so good up until now. Without them, I shudder to imagine how much ALS would suck.

We interrupt this blog for a Berkeley story: Mayra and I were at the pool and this women says to her “The truth in me honors your service” Or I think that’s what she said, it might have been “The racist in me sees you are Mexican.” I love Berkeley.

My nephew has the sweetest disposition but he uses the language of an evil mastermind. His sister wanted his new pony toy and he kept appealing to her by saying over and over “But it’s mine all mine!”

I feel like my disability has finally eclipsed my sexiness, which utterly sucks since I’m the most cuteboy-crazy woman I know. Men now look at me with a sad, pitying face and it feels like lemon juice on a paper cut to get that look. Please don’t write encouraging comments to this paragraph about how I’m still pretty. Anything short of a raging hard-on will feel like a patronizing response.

ALS has its’ own rubber bracelet, It’s red and says “Never Give Up” which I hope is targeted to the researchers and not the patients who are perfectly justified in giving up when the time is right. Mac and I ordered our own bracelets. They just say “Give Up.” Mac says when someone asks him about it he’ll say “You know, for ALS.”

I also want to make a bracelet in honor of Iowa, Vermont, Maine, New Hampshire and all the other gay-loving states that says "Suck on this, Rick Warren." I am thrilled to think I might be alive when ALL the United States honor the civil rights of gay people.

Mac is now 17 and finishing his sophomore year of college. He'll be going to UCSD in the fall as a Junior and I will be alone for the first time in 23 years. I’m thrilled for him and terrified for me.

By the way, I finished making ALS Barbie. Stay tuned for her commercial.

Ac-cen-tu-ate the Positive

2009-04-18T19:30:00.000-07:00

Dear Friends,

I can’t sing. My speech isn’t clear enough to do any kind of reliable performing. I can’t walk across the room or do a Rockette dance kick and my “jazz hands” are a disgrace to performers everywhere. I used to be a performer and now it taxes me to sit in the audience for a whole show. It’s hard as hell to write even this much.

Here is how you can help: Open your arms wide and breathe in the beautiful fucking miracle of your brief existence here alongside the hummingbirds, the butterflies and Johnny Depp. Let your life be the raucous party it wants to be and don’t worry about god calling the cops. I still refuse to believe any god worth a damn is a buzz kill. Stand on your fabulous legs and give your ass a sassy wiggle. Dance, sing, laugh and make-out frequently.

I will join you, and as you can see from the video below, I’ll do the best with what I’ve got. This video, by the way, is a gift from me to you with much, much love.

Carla

P.S. Listen carefully to the lyrics, sung by my gal, Aretha.

Happy Birthday Jack Smith

2009-04-15T10:00:00.000-07:00

Today my Dad turns 70 and this is all I can think to give him – a public tribute to a private guy who ALWAYS puts himself before others. The other day, my son had moist eyes as he talked about his “Papa.” He talked about how sad he was that the kindest and most decent man he knew had lost his Mother as a teen and now soon will lose his daughter and watch his grandson repeat history. ”He deserves better,” said Mac.

Yes he does.

My Dad was my hero. I would walk to his bus in the evening for the great joy of being able to hold his hand and tell him about school that day. From him I learned the secret to making your child feel safe you: always and without exception be patient and kind to the best of your ability. Remember that you’re the parent and as such your needs are not supposed to come first – your kids’ needs do. Accept the kid you have and don’t criticize or try to change them into your fantasy child.

I lived with my Dad when my parents split. When it was time for college, my Dad girded his loins and told me I should get a birth control device for the dorm. Months later on a visit when having a quiet moment after being introduced to my new boyfriend, my Dad asked me :”So, are you using that gizmo?” meaning my diaghragm. I adored him at that moment. He was the parent so he met me where I was at, in the best way he knew how. As you can see from the intoxicated picture below, this wasn't always easy.

At age 11, I watched in terror as my dad ran towards a stranger’s rolled car which could have burst into flames at any moment and pulled all the passengers to safety. The other Dad in our party went to a nearby house to call for help but not before telling me “Your Dad is crazy, that thing could blow.” We left the accident once the people were safe but they never forgot him and years later tracked him down to say thanks.

Outside the audition room at New England Conservatory where my dad had brought me, I cried as I listened to the other singers who I deemed far better, thus making our trip a waste of time and money. Dad said to me “ You have a problem. All these schools are going to want you and you’re going to have to pick.” I nailed the audition and got into one of the best music schools in the country.

As a toddler, and later as a child, I would pad into my parents’ room at night after a bad dream, a sore tummy or growing pains and my mother would mutter through closed eyes “Talk to your father.” And he would always get up, never complain, rub my cramped legs or stay with me until I fell asleep. Soon I learned to go directly to him. Some nights I would wake up sobbing from nightmares that he had died – the most unthinkable thing in my young life.

There are too many stories - buying the world’s ugliest sofa at a fundraising auction then upon seeing it saying “ hmmm, I must have been drunker than I thought,” shortcuts on hikes that ended up being all day Bataan death marches, post-its on my pillow reading “Goodnight Sweet Princess,” endless hours on the beach turning rocks over, impersonating Donald Sutherland – I could go on but I am typing this with one loving finger.

My Dad was playing basketball with a grandson when a bear ambled by. “What do we do?” asked the boy. “Nothing” said my Dad. “He’s not interested in us.” Then my Dad’s dog Bailey appeared and my Dad ran over and swooped the dog up into his arms and to safety. When he was understandably questioned about his priorities, my Dad said “Well, I have 10 grandchildren, but I only have one dog.”

I only have one Dad – a man of integrity, kindness and humor. A man who is willing to give anything and everything – even mortgage his house if it comes to that – to help me. A man who would gladly trade places with me. A man who loves me more than anyone else ever has.

Happy Birthday Dad. I’m so damned proud to be your daughter.

Overdue blog about a lot of stuff

2009-04-13T17:56:00.000-07:00

My new strategy with writing this blog is to train the voice recognition software before every attempt to use it. So far, the downside is that it is still only about 50% accurate and by the time I start the blog, I am already out of breath and mushy-tongued.

This blog is my lifeline, and you, dear Muselings, the rescue team holding the rope. I pledge to write at least two blogs, per month while I can, more if I can figure out a way.

I confirmed today that thanks to Wendy, I will see my brother, sister-in-love and the two adorables next month. I leave on the day Mac finds out if he got into Berkeley so pray for good news. That kid is due something good.

I was talking to Edith about anger. I have been finding myself irritated by a lot of seemingly unimportant things, which, if you are in my situation are actually not at all unimportant. For example: if someone puts my breathing machine together incorrectly, it fucks up my nap. If someone puts something away out of my reach, I can’t get it. If someone opens a window and forgets to close it, I am cold. A simple solution might be to have someone here every hour of the day to take care of those things, but I cling to my last bits of solitude and I won't let go of them until this cocksucking disease forces my feeble hand.

Edith wondered aloud if perhaps I was not angry at these things, but at ALS. I thought she might be right for about three days, but the more I think about it the more I feel that anger is not the right word for what I’m feeling. It's grief. I am finally at a point where I can no longer console myself by saying "oh well, I can’t (insert activity here) but I can still (insert activity here). Truthfully, I can’t do shit.

But I’m not angry. I have no need for that. I’m grief-stricken, but not just for me. Now and then, I correspond with other people who have ALS. People dealing with worse financial worries. People with more advanced symptoms. People more accomplished (no really) and who have contributed more in their field. None of us were chosen for this for any particular reason, we just drew the short straw. I grieve the losses we’ve all sustained but free floating anger is not the answer. It can’t be. I’ve sat and sat with this and I believe it. Anger can’t be the answer.

The thing is, I’m alive and I laugh every day. A guy I knew died yesterday of lung cancer. His name was Ron Stallings and he was this radiant, gentle soul who could always make you feel like the only person in the room. He played tenor sax and he played it well. He played it warmly and full of love and when he played I marveled that his horn sounded like an expression of his deep, sweet brown eyes. We didn’t get to play much together since I was, for a long time, married to another tenor player, but when I saw him, or heard him play, I felt good. Although he was ill, he was one of the many lovely musicians who donated their time for one of my benefits. Another musician I know once said of the passing of his mom “ I feel like there’s one less color in the world.” That’s how Ron’s passing feels.

So it’s hard to be angry, you see, because I’m still here. That being said, I want shit done right, get pissed off when it isn’t and get terrified for the future when I can’t speak or type my needs and preferences. And sometimes this all just sucks too hard.

And then other times it’s too much fun and I laugh until I gasp for breath like when Kris came up with the concept for “ALS Barbie.’ Think of all the accessories! I imagine pulling a string on her back and hearing a slurring voice say “ I hope I can poop today!” or “Silly me, I dropped my fork again!” or "Just my luck - Nurse Ken is gay!" The voice could slur worse each time you pulled the string. And I won’t even tell you the lyrics to ALS Barbie’s theme song. Somebody call Mattel!

But back to anger. (What?! You think there’s anger in those jokes???) In the last year or so I’ve had some amazing moments with amazing friends and some of the most intense and real of those moments have been with Edith (or “Central Control” as Linda calls her) performing her emotional angioplasty on my heart. I’m truly grateful that she helps me “go there.”

Words will never convey how much I adore her.

The other half of Central Control is Kathy, whose fierce love knows no (sane) boundaries. Even on her birthday, she is shopping for me and hand-grinding vitamins for fear I might choke on them. Kathy is the modern day Cassandra – who was cursed by Apollo with the gift of dire predictions that no one believed. She can foresee such horrible things, they should give her prognostications their own word like: “Kathastrophy” or “Kathamity.” When Kathy gives a disapproving glance I’m proud of myself for not wetting my pants in fear, though I’m sure many have felt that warm liquid sloshing in their shoes after crossing her. If they are lucky, they’ve also experienced her delicately chopped fruit festively displayed on a tie-died napkin, her willingness to brush someone else’s teeth, her gentle touch as she administers a hand massage or her determination to befriend a one-woman bird.

My son marvels at her with a grin on his face when she shows up with a funny t-shirt and sushi for him right before her birthday. She (and the other generals) are generosity incarnate.

Kathy’s birthday was this past Friday - finally, I understand why they call it Good.

Centraal Station Antwerpen gaat uit zijn dak!

2009-04-04T12:15:00.001-07:00

From my friend Joanna :
This overwhelmed me - watch it all the way- it made me cry just knowing how we all want to be joyful and shed these technology--numbed skins.

Terry Fox ESPN

2009-03-29T19:38:00.001-07:00

I am 46 years old and I still can't speak about Terry Fox without crying. He was only a couple of years older than me but he was a giant in my eyes. I have been through some things since then and now I don't see a giant, I see a precious too-young boy with a giant's heart.

I woke up from my nap full of thoughts of Terry, perhaps because of a visit this morning from fellow and former Vancouverites John Zaritsky and his producer Montana Berg. Terry was also from Vancouver and anyone with a particular lilt in their accent reminds me of him. Zaritsky and Berg by the way are going to do a documentary about me, but more on that later.

A few months before I graduated high school, Terry Fox dipped his remaining foot into the Atlantic Ocean. He had lost a leg to cancer and as a consequence decided to run 26 miles PER DAY across Canada. He was to end in Vancouver and this time dip his feet into the more familiar waters of the Pacific.

Like most Canadians, I tuned in to the TV every night to check his progress ( or in Canadian, "proh-gress"). Like most Canadians I was felled by grief when his Marathon of Hope ended after over 3000 miles. He learned in Thunder Bay that the cancer had metastasized to his lungs and he had to return home for treatment which was ultimately unsuccessful.

I can't quite say why I'm sharing this or what I want to say about him except that today, 28 years after his death, my heart is full for Terry. Here he is:

Pretty Burden

2009-03-25T19:46:00.001-07:00

My voice recognition software thinks I mean to say “burden” instead of bird. While trying to decide if the bird is in fact a burden, I decided to look up the word to refresh my memory. The first definition of burden in the dictionary is "a load being carried" and one of the later definitions is “a chorus of a song”. I wonder if the loads we carry
( our pets, our projects, our pet projects…) and the songs we sing ( our dreams and aspirations) are what makes us want to keep on living and maybe when our body is the only burden left, its time to go. It is sad when someone like Natasha Richardson (who died after a seemingly minor fall on a beginner ski slope) leaves the earth with so many remaining “songs and burdens”. It also sad when someone who has shed all their burdens except for their body is left languishing on earth without relief.

I have been thinking a lot about the death of Natasha Richardson and how she died doing something fun and - judging from the fact that she was on a beginner slope when she fell - something new. She was a year younger than me. Her sons were 3 and 4 years younger than Mac. I’ve also been thinking about my physical life – the life of my body. It is letting me down at unpredictable times – like the other morning when I fell trying to get from the wheelchair to toilet. I am lucky to have gotten away with only minor aches and I’m trying to console myself with the knowledge that although my body is now very uncooperative, it did a lot of wondrous things at one point (thanks for that reminder, Garrick) –perhaps enough for a lifetime.

Here are some things that my body has done:

I t has stood up on a surfboard.

It has fallen off of a surf board and gotten a big black bruise on its’ little white ass.

It has jumped during an improv scene, from a 10 foot ladder and into the buff arms of an unsuspecting fellow actor’s body, warning him only by yelling "Lookout, catch!" And it leapt.

It has gone boogieboarding in 18 foot waves in Waikiki.

It has danced in parking lots, on beaches, alone in the apartment, and on stage.

It has run headlong blindfolded as fast as it could into a line of people.

My body has walked along the third story ledge of a dormitory for the sole purpose of executing a practical joke.

It continued to make snow angels and be buried in the sand long after it matured and would do so with or without children present.

Prior to my illness, it stood upside down (since 2002 that is) on hands or head, almost every day.

It used to run into the arms of men I liked (even just a little) and leap, wrapping legs around waists and arms around necks. It tended to get their attention.

It briefly rode a bicycle for a living….and rode a bicycle in a skirt and high heels…and rode a bicycle under-the-influence.

There are so many fun and silly things this body has done that able-bodied people I know have yet to do and may never do. It was never the healthiest or the strongest or the most flexible of bodies but it was mine and I made the most of it. I will continue to do so, lugging my blessed burdens along with me and croaking out my songs too. Even if on occasion, I have to fall.

And by the way, Matt Dick-taste thinks Natasha is spelled either “net nausea” or “NASCAR.”

Hello, how are you?

2009-03-21T18:22:00.000-07:00

It took me half-an-hour to write two paragraphs of a blog, only to get Mac’s dreaded spinning wheel of death. I had to re-boot Matt Dictate and start all over. Nobody can call me a quitter.... at least not yet.

It’s difficult for me when someone I haven’t seen for awhile asks "How are you?" “Good” I will answer and mean it. "Really?" is often the skeptical response. How can I explain? Life is amazing and terrible, and hilarious and sad. Every day I face new hurdles and every day I laugh out loud.

I am in awe of the magnolia tree outside my window. I love my bird, who just foiled my voice recognition attempts by yelling “fuck ya" when I said "I love my bird," and who is continually messing up the program’s train of thought by shrieking "HI!" The bird forgets that she can’t fly and she falls rather unceremoniously, landing with a crash and squawking "Hello, how are you!" every time. She falls so much I would swear she has ALS. She is so adorable that she helps me remember to be good-natured when I fall.

It is really all a matter of attitude and perception isn't it? My niece hands my nephew some imaginary seeds, which she’s been carefully holding. She plants the imaginary seeds in an imaginary plot and shows her brother where he should plant the rest. He says no. She tells him he must plant them as she has instructed. Again he refuses so she grabs the imaginary seeds from him and walks away. My nephew is bereft . He cries tears only a toddler can cry as he displays his now empty palm to my brother who then has to ask his daughter to give back the non-existent seeds. This manages to placate my nephew. The power of the mind.

When I hear stories about my niece and nephew, I’m great. When I see the look on my brother’s face as he recounts them to me, I’m awesome.

So of course when I say "I'm good" it's true. Annabel and Atticus were playing a game and Annabel threw her hands up in the air and cried "I win!" And Atticus in turn threw his hands up in the air and shouted "I lose!" With equal delight. That’s how I feel – I mean like both of them.

Case in point: this bucking software drives me insane. (Matt Dictate wants me to call it “bucking software.” Sigh. Fine.) It takes forever to write one bucking sentence, then it gets the bucking names Annabel and Atticus correct on the first try.

What the buck?!!?

Okay, but if you look at it another way, how in the hell is it even possible that I am talking into a little microphone and words are instantly being typed? That is totally mind blowing. If I had had this disease even 10 years ago, how much harder would it have sucked?

Case 2: Sure I waited a ridiculous length of time for my wheelchair to be approved by DoucheNet….I mean HealthNet... but it arrives on Tuesday and it is chili pepper red!

I can choose how to look at things. That is the one thing this disease can’t take from me. That and love.

At least that’s what I tell myself as it gets harder and harder to feed myself and impossible to do most other basic tasks. It’s so surreal – I am so handicapped and yet I'm so damned good lookin'. (Please don't come after me for that one, PC disability police -it's a joke.)

But seriously folks....

It's helps me deal with the not so fun aspects of my life knowing how so many of you have shared with me that my illness has brought you in touch with your sense of gratitude. Knowing that so many friends and cyber friends recognize what an awesome gift it is to breathe, to eat, to walk, to type and simply to observe the life around us makes the bullshit go down a little smoother (and no, that is not intended as a mixed metaphor.)

I have to say though, all gratitude aside, I wish Matt Dictate were a person so I could give him a piece of my mind before kicking him in the balls. I bucking hate you Matt Dictate! (I'm feebly attempting to shake my fist. Matt appears un-phased.) By the way my friend, whose name I won't mention in case the ladies in her PTA read this blog, did not blog comment me the following, because she likes to pretend to be demure. As if. She e-mailed me and suggested that since it was MY software it should be called Max Dick taste.

So if you're wondering how I am, I am good. I am terrible. I am in love with so many things and I am so tired and so sad and so scared. Sometimes I want it to all be over soon and sometimes I want to pull the world to me with my hands on either side of it, draw it close and put my lips to it.

I want to stick my tongue in the mouth of the world.

Meet Matt Dictate

2009-03-14T13:22:00.001-07:00

Greetings, Muselings! I’m writing to you with the help of voice recognition software, which calls itself Matt Dictate. You know you’re in trouble when your MacDictate program doesn’t know it’s own bloody name. Matt it is.

The other day I moved a refrigerator with my wheelchair. Now you need to understand that I can’t even comb my own hair, but I can move a frickin’ refrigerator. I think that sums up my life pretty well. It took me almost a week to write a blog about health care. It got accidentally deleted. My hands are aching from the effort several days later and the damned blog has disappeared into the ether. Fuck. It was a great one too. An indictment of the fart joke we call a medical system in this country. Damn it was funny. I don't think I will ever be able to find quite as insulting a description of Julie, the gatekeeping bridge-troll from Dr. Gjeltema’'s office. You see, I was finally approved by the mega-corporation, Health Net (who reached me from their flagship office on the Death Star) for my own wheelchair. Health Net has yanked my chain about this chair for seven months. When they aren't torturing cripples, Health Net likes to take candy from babies (By the way, my voice recognition software thinks I said “can be thrown babies.”)

Now, apart from moving refrigerators, wheelchairs are great for getting cripples from point A to point B. (Yes, I am a cripple. I am not “differently-abled” except perhaps on the moon.) I wonder how they thought I was getting around without a chair? Lucky for me, the Muscular Dystrophy Association lends durable medical equipment to people who are Jerry's Kids like me. Thanks Jerry, I almost forgive you for your homophobic public comments. As I love to tell people, whether they want to hear it or not, Jerry Lewis should not be afraid of gay sex since he can already fit his head up his ass. By the way – at this point, I would like run over Matt Dictate with my newly approved wheelchair. After all it can move refrigerators so it should be able crush Matt Dictate.

Matt Dictate will not let me say “fuck” or “cock sucker” or “head up his ass”. It says “fox” instead of “fuck” and when I let loose with a rant including a series of the aforementioned curse words here is what Mac Dick thinks I said. Read all the way through, trust me:

Cheney a hot pink thought they won't they had up to that good as that look at this as a pp in his head very is not a prayer gay sex than they are in a head to bed did have all cake out in wall they thought a long day and out of the bag as that would at this as a new depicting students at his wings' skull of a fluke or so a little studio soon as a new news and say a for him his own he was asked about in what it calls a and contributed to his for a wife's is and I clitoris for life and also the choice right run it like you should read or choose life for Jews that modeling by the show's life good new rules went off solo wound you believe that abortion is the choice of what and are absolute stuff with the choice of sites noting you don't need the film is from the because you've been designing and conducting fell for that what I can't say when like that I can flit in and from a

I did not make any of this up – how could I?

Along that absurd same vein, I ordered a “blanket cradle” from the medical supply place. It’s for people who can’t move blankets with their feet or legs. Wendy opened the box, which contained the blanket cradle and a flyer for dildos and vibrators!!! Not even special handicap friendly dildos (chin strap-on?) but your garden variety able-bodied sex toys. I’m pretty sure I’m this company’s youngest customer and even I was taken aback so what gives?

Kathy made a wheelchair bird perch for Ronald who enjoys hanging out with me flitting from perch to lap to the big perch. The other day while seated on the perch she set off my life alert alarm with her beak! Fortunately, the operator found it amusing. Perhaps I need to teach Ronnie to say “Help, I’ve fallen and I can’t get up!”

I’m trying to teach her to yell “Freebird!”

So my right hand is almost gone. I tried to give Mayra the “thumbs up” sign the other day to indicate I was fine and my hand cramped up something awful. Just imagine how much it would hurt to high five!

Joni Mitchell said “Laughing and crying, you know it’s the same release.” Or as Matt Dictate would say: “Land less than an and know his name in the release.”

ALS is fucking hilarious. Stay tuned for more "mac-a-propisms."

Dying as a Work of Art

2009-02-27T17:01:00.000-08:00

I am a performer who doesn’t perform. A singer and actor who can no longer sing or act. I have spent a lifetime using the happiness and heartache that has come my way as artistic fodder. I shamelessly poached from my own life and put it on the stage to the point that in the midst of a mugging at gun point or while being asked to fellate a creepy driver as I walked along a lone New Jersey highway or while walking 6 blocks to the hospital after my water broke because my baby daddy was too cheap to pay for hospital parking, I would console myself by thinking: this will make a great story if I survive!

So now I have this great material and truthfully, I don’t know any way to deal with it but publicly. I share with all of you because I don’t know another way. I am actor and spectator – watching in fascination at the comic and macabre tricks my body is playing on me, then reporting it all back to you with gusto and (I like to think) flair. I’m not blogging to help anyone feel better about their life or to offer a catharsis service – I do it because I don’t have a better idea. I was talking to my brother about this very thing and I was so grateful he got it, even though he is an immensely private person himself.

It’s becoming harder and harder to type and talking aloud is tiring and finding time when no one is around so I can talk aloud freely is hard. I hate to think that eventually even this blog will be taken away from me.

My right hand is very weak and will soon be as useless as the left one. With that hand will go the last of my once-treasured independence. It all becomes kind of ordinary - these little losses cut up into tiny digestible pieces –like god is playing Kathy Sprague! (Inside joke alert: Kathy always cuts my food for me –even the stuff I could maul apart crudely).

I hold onto the present moment like it’s a tree in a tornado. If I look back at my gorgeous life too wistfully I’ll crumble, if I look ahead to a time when I will be a prisoner in my body, I won’t want to go on. This is it, I tell myself. So you can’t sing? Then love how your bird sings along to all kinds of music. Dance in your wheelchair. Laugh with your son. Keep a brisk pace because if you slow down, despair will come nipping at your heels. Love, love, love then love some more.

And write about it all as long as you can.

Shake A Tail Feather!

2009-02-22T21:39:00.001-08:00

Your smile for the day. Watch the whole thing!

The Thing with Feathers or the H Word

2009-02-20T22:51:00.001-08:00

I was taking a walk with the walker across the room using the arm splints I got from Michelle (my gorgeous PT) to hold myself up. Natta walked behind me to brace me. It was an exhausting and shaky little walk, but it felt great too. I walked past Ronald’s cage and she freaked out. She forgot that her wings are clipped and she kept trying to fly only to fall rather unceremoniously. I said to Natta “She sees me walking so she thinks – well hell, if she can walk, I must be able to fly. We laughed until I almost lost my balance.

Hope is the thing with feathers.

I’ve been thinking and talking a lot about hope lately. With Kaila and her friends, with my doctor and with Jason. With all due respect to President Obama, I’m not a fan of hope. Hope is a kind of passive emotion. We hear about hopes smashed, hopes thwarted but we never say someone made their hope come true. Hope is vague just as luck is indiscriminate. Hope waits around. Hope gets disappointed.

I hate it when people tell me not to give up hope. Of course I won’t – I never had any to begin with. What I have is belief: belief in the science that says for now ALS is incurable and belief that I can have a good life despite this fact. My outlook may not seem optimistic but I am an optimist. My good attitude is not contingent on the medical cavalry rescuing me at the 11th hour. It is unconditional and un-tethered by heavy hope.

The stakes are high. I don’t have time to dick around with hope or despair. Those twin time suckers hang out together all the time. I have time for laughter and joy and sex and music and work and play and children and birds. I have time for water and movies and family and poems and tears. I have time for girlfriends and butterflies and brandy and practical jokes and the internet. There’s simply no time for hope.

Jason was talking about one interpretation of hope – I think it was Jung’s but I’m often wrong – involving Pandora’s Box. All of the evils of the world are unleashed but the box is slammed shut before hope escapes. “Think about it,” he said. “That means hope was one of the evils.”

Wow.

On another note, my pal Gina is throwing a benefit for me next Friday at The College of Marin. For info call 415-485-9555. Laughs are guaranteed.

On yet another note, I want to be the face for Thick-it ! I fucking love this stuff! It’s a water thickener that makes water nectar consistency but it still tastes JUST like water. When your larynx says “stick it” just try Thick-it. I think I’ll do my own commercial so stay tuned.