Wednesday, May 12, 2010

“I’m Singing”

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

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

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

There’s a knock on the door.

Carla wants to see you.

What time is it?

Six AM.

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

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

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

“What was that?” A friend inquires.

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

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.”

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:

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 -

Saturday, May 01, 2010

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

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

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

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

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

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

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

Dropping Keys

The small man

Builds cages for everyone



While the sage,

Who has to duck his head

When the moon is low,

Keeps dropping keys all night long

For the




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?