Monday, December 31, 2007

I have to admit, it's getting better, getting better all the time

It’s getting better all the time. Today I sent out emails to announce a gig. It was nice to worry about whether or not I’d get a good enough crowd….or a bass player…rather than worry about the whole dying thing. I’m playing at the Hillside Club in Berkeley on January 11th (8pm) in case you are local and reading this blog. It should be a very emotionally charged event.

I also added people to the DMC – a group that started up a couple of months ago of friends who agreed to drive me places, help with shopping etc. It’s aptly named Driving Miss Crazy. Most of you who read this blog are probably already members but if you want to help or just want updates, get in touch and I’ll put you in touch with the ringleaders. In that respect, I truly don’t know anyone as lucky as me.

In the meantime, still no authorization from Managed Hell for my drugs or to attend the ALS clinic and the pills are $1000 a month so clearly I need the managed care cocksuckers to pony up. Mike is on the case and I have every reason to believe he will unleash the hounds of hell upon them if it comes to that.

Vote for a candidate that believes in national health care.

Sunday, December 30, 2007


It’s been 5 days since I heard I have ALS and already there is a sense of “back to normal” or “new normal”. I woke up this morning and I wasn’t crying. I almost missed the grief – l guess that the vividness of those feelings is some consolation prize for being sick or something... I can’t explain it. Mac and I had some of the kids from school over last night and we laughed and played Pictionary and ate just like always. Shakespeare nailed it in so many ways, but one of them is how he included clowns and inane situations in his tragedies. He recognized that we couldn’t handle uninterrupted Hamlet or love sick pups like Romeo and Juliet so we have the gravedigger, Rosencrantz and Guildenstern, Lancelot, Gregory and Samson… the list goes on. We couldn’t take it otherwise. We need to return to “normal.” I know my “normals” are going to change over time – right now walking is somewhat normal but not forever. Right now I can (barely) operate the clasp of a necklace but one day Velcro clothes will have to be normal. I guess the grieving will be parceled out on an as-need basis –like James Taylor says in Never Die Young “….cut up our losses into doable doses. Ration our tears and sighs…..”

It’s really beautiful how resilient the human spirit is. Life just elbows its’ way in and shoves self-pity and grief to the side because life doesn’t want to fuck around.

One place I haven’t gone and honestly I’ve never personally heard a dying person go to is: “why me?” Really think about it. Why NOT me? Why anybody? Shit happens, it’s random and you deal with it. Period. I had a student who told me she was angry at god now which made me want to hug her but also made me feel the need to point out to her that god was far to busy helping the New England Patriots to a perfect season and she needed to cut him ( yes him – I’ll explain later) some slack. My poor devastated "baby's daddy" told me that he had prayed for the first time ever that my diagnosis would be good. “Yeah” I replied drolly, “that’s what tipped it.” We had a good laugh, but really what it comes down to is this: All our security, all our comfort, all our efforts to control our destiny -it is all a myth. Just ask the Ancient Greeks. We are walking a tightrope all of us and the only way to deal with that uncertainty is to embrace it, to seek balance, to love the all-powerful life force and to recognize that certainty ain’t so hot either.

Today a walk with Alison, hang time with wonderful Mac and some warm soup. Mac and I are working on an adaptation of Aristophanes play “Peace” (chosen by Mac). That boy is going to be just fine.

Friday, December 28, 2007

Mary Oliver says:

"when death comes
like an iceberg between the shoulder blades,

I want to step through the door full of curiosity, wondering:
what is it going to be like, that cottage of darkness?"

I always loved this poem because like all poems about death it's really about life. Maybe dying is a way of teaching us how to live, if we're lucky enough to die slowly to get the message in time. Maybe as I lose, piece by piece my ability to do the things I have taken for granted I'll see what a miracle it is to run, walk, hold and yes, to breathe.

She goes on to say:

"When it's over, I want to say all my life
I was a bride married to amazement.
I was the bridegroom, taking the world into my arms.

When it's over, I don't want to wonder
if I have made of my life something particular, and real.

I don't want to find myself sighing and frightened,
or full of argument.

I don't want to end up simply having visited this world"

Yes, yes, yes Mary Oliver.

Funny how these themes have been so important to me for the last 2-3 years. I thought I was mourning the death of a long marriage and preparing myself for the birth of a new life but maybe I knew this day was coming and I wanted to be ready for it.

Thursday, December 27, 2007

Stages of Grief are All A-jumble

Day Two:

Isn’t denial the first stage of grief? I feel like I accepted the diagnosis
( Acceptance, Stage 5) a little too rashly. Maybe it’s a mistake. Oh, yeah – there’s the denial. I’m now self-diagnosing myself with Primary Lateral Sclerosis which looks a little better than ALS. I mean after all, I can’t even pronounce or spell the words for ALS and I should have a disease I can spell, right? I guess that’s denial too. Denial mixed with planning, desperate wishes to get some shit done like boogie board again before my left hand is totally useless. Like build a giant safety net for Maclen’s impending freefall. Like getting lots of music recorded and maybe one more video of Wedding Singer Blues. Like just one more fling with a cutie-pie. Isn’t that Bargaining ( Stage 3)? I’m very precocious. Already up to Stage 3. Trust me to over-achieve in the area of grief. Just a little bit of anger (Stage 2) at the doctor’s office and Healthnet for fucking up the referral. I yelled and said “fucking” before every word. Literally. The sneaky devil in the office got me though. She gave me her name and direct line and said “this is so hard for you, I can’t even imagine what you’re going through” and then I bawled like little baby to her, a complete stranger. Georgia, you are a precious diamond ring swallowed up and now lodged in the lump of shit that is the American Medical System. It’s hard to dig through that shit which is smelly, gooshy and smattered with corn but you’re worth it.

My dad left today. I wish I could make this better for him, I really do. Before he left, he told me of a dream he had. They were able to take the ALS out from me and put it into him. I know how he feels because I would happily shoulder all of my son’s grief if I could. That isn’t possible though (Acceptance, Stage 5) and I recognize that he has his own journey to travel in this life. I can help him with equipment but I don’t get to go with him. It’s like his first camping sleep away to Yosemite. I was so scared he’d freeze to death. Or the Jewish camp, which was apparently a re-enactment of the Exodus from Egypt - where he vomited for 3 days, free fell because of a faulty belay (sp?) and was denied bug spray because there was “too much to carry.” He got through that without me and probably endured it thinking “Well, at least I’ll have a story to tell.” He got that defense mechanism from his Mom. But I don’t want to tell my latest story. I’ll give up using my personal experience as stage fodder to see my son get to be my age (Bargaining again – Stage 3.)

Here’s the cool thing though: The world is filled with the most beautiful and amazing human beings. I feel such love and support – Sally Field has nothing on me. I am humbled and moved and grateful and proud of all the awesome people I know. You know who you are. Why isn’t gratitude one of the stages of grieving? Abundance? Lust for life? I could just eat the whole world up and everyone in it. So beautiful.

This excerpt from Naomi Shihab Nye:

….before you know kindness
as the deepest thing inside,
you must know sorrow
as the other deepest thing.
You must wake up with sorrow.
You must speak to it till your voice catches the thread of all sorrows
and you see the size of the cloth.
Then it is only kindness
that makes sense anymore….

the long goodbye

I’m looking out the window of my apartment onto the Berkeley Hills on what is a genuinely fabulous day. This view and the deck from which I enjoy it has given me nothing but pleasure since I moved into this apartment in what can truly be called the weirdest year of my life.

I will cut to the chase. I have been diagnosed with ALS ( Lou Gehrig’s Disease) – an incurable and fatal illness which will take me - maybe in a year, maybe in 10 years. Of course I hold out for what the Flight of the Conchords would call “ a hilarious misunderstanding” but I’m also not in denial.

I'm posting this because I want people to know so I don’t have that awkwardness around the question “ So what’s new with you?” when we bump into each other. I also want people to know that you don’t have to watch what you say around me. There are no verboten topics. If I don’t want to hear about your shamanic healer who uses ingestion of bark and owl urine to cure unthinkable illnesses, I’ll tell you flat out (but in a nice way). But please don’t feel like you need to watch your words. Being present is enough. In fact it’s more than enough. Please don’t be afraid to call or write but don’t be offended if I take a while to answer. I’m not being a Californian, I’m not dissing you, I’m just overwhelmed is what it probably means.

I also want people to know that the words in the Louis Armstrong song What a Wonderful World are actually incisive and NOT at all corny. Who knew? I heard a little baby singing in a stroller today and I looked up at the blue sky and the powder biscuit clouds and I was flooded with an overwhelming sense of awe and gratitude. What an amazing fucking world this is!!!! How awesome it is that I have gotten to have the experiences I’ve had, loved the people I’ve loved and done it all with a fit and functioning (and dare I say hot?) body.

Don’t get me wrong. I think it’s bullshit that I have to go this way. I don’t like it one bit. But that’s the hand I’ve been dealt and all I can do is feverishly, fervently and with great intention live the rest of my life to the best of my ability. I will not become a tireless crusader for a cure for ALS, I will not fight until the bitter end or be anyone’s poster-middle-aged-woman – rather I will do what we were all meant to do – be with people I love doing things that make me happy, trying to make the world a little brighter when I can and giving myself a break when I can’t.

Remember the speech Lou Gherig gave when he called himself the “luckiest man alive?” I totally get it now.

I keep thinking of Mary Oliver’s line “Tell me, what is it you plan to do with your one wild and precious life?” I plan to start with boogie boarding and go from there. I’ll update on this blog.

Friday, December 14, 2007

Birthday BLog

I spent part of my last birthday locked in the bathroom of my old house sobbing. The second part was spent in a cheerier manner, watching The Last King of Scotland with my lovely son Mac. I have always loved downer movies because they made me feel like my life wasn’t so bad and what was I complaining about. Kind of like when your parent hits you in the head to get your mind off of a stubbed toe. Oh, your parent’s didn’t do that? Hmmm. The parallel of watching this movie is interesting because I remember being obsessed with the Entebbe hostage situation and subsequent invasion when I was my son’s age. I thought there was nothing sexier on the planet than Israeli soldiers back then. He became somewhat fascinated with Idi Amin after the movie, but avoided the fatal crush on Israeli men for obvious reasons.

Why is there such a market for movies probing the darkest corners of our collective hearts? Why do we love to see others suffer? After all these years is it just as Aristotle said that drama should arouse pity and fear in its’ audience? What are we looking for and why can’t we find catharsis some other way? Mac told me of a funny Onion article in which a man shot James Gandolfini of Sopranos fame stating that “now that he’s dead, I finally have closure.”

This year there is no one to drive me to the bathroom in a fit of tears but this year my son and I will go to an equally miserable movie on my birthday – In the Country of Old Men. If bad times make us need difficult movies then by god, bring on your worst, Cohn Brothers, I could use the distraction.