Friday, January 29, 2010

Things to Do

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.

Monday, January 25, 2010

Channel 7 piece

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Tuesday, January 19, 2010

Highs and Lows

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:

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.

Saturday, January 09, 2010

Interesting article by a brilliant man

Wednesday, January 06, 2010

Like our blogs are holding hands

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.