Wednesday, July 22, 2009

Check it out - 2 Blogs in 1 Week!

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.

Saturday, July 18, 2009

Copy That

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.

Tuesday, July 14, 2009

Fundraiser for yours truly

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 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,

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

Saturday, July 11, 2009

Young Soldiers

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.

Thursday, July 09, 2009

funny blog by Ezra Fox

Thursday, July 02, 2009

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

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.