Heroically Sportless Aromatic

So two more events are coming up. One is a fundraiser at BATS (Bay Area Theater Sports) on June 12 and the other a gig with my band at The Jazz School on June 14. (The answer is yes, I’ll be very tired. I also have recording and lithium trial business that week.) To find out about BATS’ fundraiser go to http://www.quiltmamas.com/dmc/ways_to_help.html. To buy tickets email the amazing Laura Derry at: batsfriendsofcarla@yahoo.com or call
(415) 759-1304. This is going to be a very funny and entertaining evening with some of the best improvisers around – period. Even if it weren’t a fundraiser I’d recommend it.

A brief digression from plugging: if you only know me from this blog you don’t know that I am bringing the hilarity to ALS – a sorely needed commodity. I’m pretty sure that if you held a summit with Stephen Hawking, Lou Gehrig, Shostokovich, Charles Mingus and David Niven, all of them together couldn’t come up with one ALS joke as funny as my friends and associates and I do on a regular basis. You can spell the word “laugh” out of the letters in amyotrophic lateral sclerosis (or Lou Gherig’s disease) and in fact if you mix up and use all the letters up you get “laugh or hoot my ass sillee - crises are topical, girl…. dss” or something even better than that if you’re smart.
If you just do " amyotrophic lateral sclerosis" you get “heroically sportless aromatic” which is fitting and just "Lou Gehrig’s disease" gets you “She is a sludgier ego.” Okay…

When I digress, I really digress. This is all by way of saying June 12 promises to be highly entertaining and big ups to Laura, Rebecca and Lisa for the legwork, the caring and the vision.


June 14 is a show at the Jazz School to launch the new cd. Info about that show can be found at:

http://www.jazzschool.com/html/events_concerts.html
http://www.quiltmamas.com/dmc/carlas_performances.html

Every singing gig has become sacred to me since I don’t know how quickly the voice, the energy, etc will go and how many gigs are left. Since I was 11 I had a ‘thing” for audiences but now the crush has blown up into an all out love affair. We’ll be doing songs from the cd as well as a new one ( or two if I can get it finished) that I wrote plus one or two from the upcoming cd which I’ll be working on all week prior to the gig. The amazing Kai Eckhardt will be stepping in for Jon Evans on bass and the rest of the band are the usual suspects – Mike Zilber on sax, John R. Burr on piano and David Rokeach on drums. All three of these guys are among the best on their instruments so it’s an honor to get to play with them.

If you’re in town I hope you can make one or both of these or tell your friends about the events.

In other news I checked off another bucket list adventure and I’m running out of things on the list. I still need to take something from a hotel minibar ( there was no minibar at the Vancouver Holiday Inn), Pacific Grove and the butterflies ( oct) Disneyland ( this summer) drive my miata in an abandoned area
(next week) and be reckless about love ( easier said than done). I also need to add to the list just incase there’s some unwritten cosmic law that once you’ve completed your list you die.

So here it is: 1) wheelchair athletics: skiing, whitewater rafting –something adrenaline inducing 2) go to the red light district in Amsterdam 3) go down a snowy slope on a toboggan 4) sleep under the stars out in the world not just on my deck 5) write a book or a screenplay or both 6) go to Vegas as someone else and stay in character the whole time – I want to go as a woman who wears skin tight purple pants and has decals on her really long finger nails. Her name is Dee and she’s from a suburb in Chicago since I like that accent. She likes roulette.

The Four Bullshit Truths

I began my drug trial on May15 and tomorrow I go in to get my blood levels for lithium tested. It’s anybody’s guess to know how long before we know if the drug is helping slow down the progression of the illness. The hands keep weakening, the neck cramps every day. I don’t believe I will beat ALS. I’ve never had that kind of fighter instinct. At Sports Day in Kindergarten I came in dead last, slowing myself down even more because I was yelling to my best friend at the time “Good luck, Jonathan, I hope you win!” I never pushed my career because of that same lack of killer instinct …or maybe it’s a lack of entitlement. It makes no sense to me that I could beat an incurable disease. And yet, I’m an optimist. Is that weird or what?

My career and relationship dreams never came true. The end of my marriage did not break my heart but events since then most certainly have. My body is betraying me and even when I do what I’m told and move into a wheelchair early, I still get injured, I’m still sore and still shaky from my launch the other day. (By the way, it’s not the flying that’s dangerous, just the landing). I adore my son and face the reality of leaving him and wondering will he allow others to nurture his tender heart when I’m gone? How can I bear to leave him? And yet, I’m an optimist. Go figure.

All the things I mention are true. They are unavoidable. The first noble truth is that suffering is inevitable and on bad days I want the Buddha to have called them the Four Bullshit Truths. But mostly I notice how blue the sky is, how delicious laughter sounds, how great it feels to hold a warm cup of tea in my hands. Mostly, I grab people and hug them and tell them I love them when I have the impulse to do so. Mostly, I see miracles everywhere – in my son’s blogs and jokes, in the earnest joy of little kids, in the beautiful melodrama of teens and college students, in my dad’s tears, in my amazing friends and their support and in loving someone and being loved back.

I had a dream the other night. I was walking down the street with a dear friend and I was walking completely normally. I felt completely normal and healthy. It was a glorious sunny day. I turned to my friend and said “ I don’t know if I’m happy because it’s sunny or it’s sunny because I’m happy.” And my friend said “it’s the latter.” I woke up in the warm glow of love and contentment.

How do I have time to fight ALS when all around me the world invites me to joy?

You Were Expecting Maybe Randy Pausch?

This is the speech I gave at the year end banquet at my school. It was also my last banquet period. It's kinda raunchy at times but hey, that's me. I think the underlying message is still good.

vancouver

I sat next to my father-in-law (he’ll always be my father-in-law) with my head rested in the crook of his arm, our arms around each other. What a funny pair – he slowly losing his amazing mind to Alzheimer’s, me quickly losing my young-for-my-age body to ALS. He came in and out of focus, sometimes making perfect sense, sometimes speaking some divine confused poetry. “I want to take you with me” he told me. To the afterlife, I wondered? We’re in a macabre race he and I, and that day I felt like I was winning. “I better let you go so you can eat” I said. “ I just did” he replied. “The food of love.”

I am still shaky from my first solo flight on the wheelchair – and I do mean flight. I was alone when it happened. The wheelchair hit a bump at warp speed and I flew 6 or so feet, landing on my knees. There was nothing to hold onto so I couldn’t get back up and had to wait for a construction worker to lift me. I was so shaken I didn’t even track if he was cute. I hurt – arms and legs both - but nothing is broken. I am however completely unable to use the left hand right now even for gross motor stuff. The fingers are jitterbugging and completely out of my control even with my brace on.

I worry about writing about this since just the other day I had to convince my dad that I needed to be independent. He and some of you other concerned citizens might read this and think “she shouldn’t be out on her own.” She should. She will. I would fall again for the chance to go find a restaurant, a card shop or a beach – as I tried to do in Robert’s Creek. No sidewalks there so I took the wheelchair along the side main drag of on my own. My father white knuckled it and apparently tried to get others to check on me, but ultimately let me go even if it meant me getting into trouble ( what did he think I’d do, take a flying leap out of the wheelchair? Oh wait….) I couldn’t make it to the beach
( too steep) but sometimes the reward is in the trying.

3 year old Annabel and 1.5 year old Atticus, my adored niece and nephew are the smart ones. They refused a ride on the chair – lap or no lap - but insisting on pushing me in it! I laughed until it hurt. It was so hilarious and a little heartbreaking to have these beauties behind me guiding my chair. The ultimate test in accepting help.

Don’t get me wrong. I accept help every day. I see the day when I need help all the time getting closer and closer. When someone does for me – from grabbing my arm to opening a door- I take in the care behind the gesture and I recognize that it’s a loving act to accept the kindness as well. I just cherish the things I can do on my own and I don’t want to let them go. If I fall down then okay, I fall down. We all fall down.

Still it is other people that matter in the end run and I’m grateful to have them around. I look back at images from my visit and I want to press them between wax paper to preserve them. Even still there were friends and relatives I wasn’t able to see ( such limited energy, have I) and wish they could have been part of my trip.

Here’s some moments from the folks I did see:

Annabel saying “Bravo boundaries Auntie Carla” or looking at a flower bed and saying “Look at this, I LOVE it!”

Snuggling on the sofa in between my brother and sister-in-law after crying because I can’t draw for Annabel anymore.

Weird man in the park remarking that you don’t often see a “hot redhead in a wheelchair.”

My brother walking up to me and putting his head on my shoulder.

My other brother telling us about his volunteer work for people in wheelchairs which entails, as far as I can tell, taking a quadriplegic to a strip club. I’m not kidding. That same brother crying in my arms in the White Spot parking lot.

Atticus throwing his ice cream down on the ground the way football players throw the ball after a touchdown or field goal or whatever it is they do, then grinning proudly or him intently singing “you” at the end of each phrase of Happy Birthday.

My parents leaving me alone to fall even though it goes against all their instincts. This is an act of love.

A dear friend calling from home to put me in touch with a friend of his who is going through his own health crucible. Listening to the message and thinking I might be able to help someone after all the help I’ve received.

Wheeling along the sea wall with my mother, looking out at the blue blue mountains and the sailboats in their slips and the Burrard St. Bridge. Remembering without regret that I used to ride this route on my bike every day to work. I’m still on wheels. Still traveling the same gorgeous path.

My friend Gordon referring to himself as a “tiling savant.”

My mom saying she’s proud of me.

Some lengthier scrapbook items:

My sister-in-law who has undergone that transformation that many women do when they have children. They become mother to the world. She was always a lover of people but now she is such a remarkable mother (they’re both great parents) and their children are so damned happy. She is much taller than me (I’m 5’8” to put that into perspective) so when she holds me, my head is against her chest and I feel very safe. “How am I supposed to get through this?” I ask rather rhetorically since of course there’s no choice. She coos in my ear “You’ll get through by being weak, you’ll get through by being strong. You’ll get through in love and you’ll get through all alone.” Then she kisses my forehead and says “wow, you smell the same” referring to my brother and I. It makes me happy to know I smell like him. Like me he is also funny but if I’m Edward G Robinson with a machine gun spraying jokes like so many wild bullets, he is an elite Israeli sniper, only taking the shot when he is assured of deadly precision. In other words he kills me every time.

My mother and I down at Granville Market. We walk by a theater where I had planned to try to do Wedding Singer Blues. I was about to get wistful when I see the marquee – fucking Tuesdays With Morrie!!! Based on the book about an old teacher with…you guessed it…ALS. That’s some funny shit. My mother suggested she take my picture underneath the poster, which is of course the only thing to be done on such an occasion. If I can figure out how to add the pic, it’ll follow this paragraph even though I don’t look like a “hot redhead in a wheelchair.”



Reunion. In my late teens I loved my best friend so much and she me, that we bemoaned the fact that we were attracted to men. We were madly in love except for the sex part and would consistently close down a restaurant, a bar, you name it. We had a heart-wrenching falling out 14 or 15 years ago but this trip we picked up where we left off – closing a restaurant, spending the day and night walking, wheeling and talking about the real stuff, crying and loving each other. She helped me take my first wheelchair bus adventure and my first wheelchair cab ride. It’s a miracle. After well over a decade of not being friends, I sat across from her and observed how the love gushed out from me and thought “She must immediately meet the DMC girls.” She quizzed me on them – asking for a profile of each of them. She looks the same as she did in the 80s – a couple of crow’s feet that only deepen her great beauty. I am so very very grateful to have her back in my life.

Talking for an hour and a half with Mac on the phone about Robert Byrd, the large number of left-handed presidents and Ted Kennedy’s brain tumor. Missing him. Annabel told her parents at the airport “We’re back to our 4 family now.” I am anxious to return to my 2 family. We have a lot of catching up to do.

I read what I’ve already written and it really feels like unfiltered journal material rather than blog material, but here’s the thing – these snapshots are the important moments. When I have a bad physical day or trauma like the wheelchair launch, I feel very close to the notion of my own mortality and I love this world and its’ inhabitants with a teeth clenching zeal that I see in my niece. I want to hold tight, fiercely to all of it. To all of you. These are, to be sure, just moments that bring great meaning to me and those who were there, but you all have your own moments like that too. I hope you can love and honor them now, even the ones that hurt.

That’s the perk of this disease – I get to be preachy.

Partici-blog 3 - because your comments matter!

Here’s the latest idea for a partici-blog ( though not to late to write comments on the first two. Just hit comments at the bottom of this blog and write your list.

Things I never took for granted

1) the northern view of Vancouver on a sunny day – the way the sky and mountains were impossibly blue. For 45 years it’s taken my breath away.
2) Maclen Jacob Zilber – enough said
3) Singing – I loved it even when it was hard
4) The honor of performing in front of an audience
5) Dark chocolate
6) Candlelight – sitting alone or with someone listening to music or dancing
7) The beach on a warm night
8) Peets
9) Kindness of friends (whether I told them or not)
10) My Dad being there whenever I needed him, no questions asked
11) Aretha Franklin, Gladys Knight, James Taylor, Joni Mitchell
12) The BC Ferry – standing on the deck looking at the blanket of evergreens
13) Practical jokes
14) Ocean kayaking at Robert’s Creek
15) Breast feeding
16) Walking on the street in New York City

Things I did take for granted but wished I hadn’t

1) using my body – moving, walking, dancing, yoga
2) simple activities - turning keys, lighting matches, cooking food
3) red hair
4) alcohol
5) attracting the opposite sex
6) down time
7) having the time and funds to travel
8) writing, typing, communicating in any way
9) breathing
10) eating
11) walking dogs
12) dawn breaking

Okay, now you.

love- the renewable resource

Remember hot summer nights when your parents would let you sleep outside? Pitching a tent was cool but oh so much better with nothing between you and the canopy of stars
(that was before light pollution). Why do we stop doing that except on camping trips? As an adult, I remember one night on a Brooklyn rooftop but that’s it.

I slept on my deck during our last little hot spell. I looked out at the Berkeley Hills and without my contact lenses I could imagine the lights were stars. It was a challenge to be sure to get up and down from the ground to go the bathroom but oh, so worth it. If I had had more than one loaner fan I probably wouldn’t have done it and I would have missed out.

It reminded me of a scene from my friend Kim’s play – I think it was Tattle Tale. All the other girls at the slumber party are running around in their pjs on the street but Kim doesn’t want to get in trouble so she sits in the tent listening to the sounds of the others’ joyful laughter. I’ve been inside that tent too much in my life. Now I want to run wild on the street and damn the consequences. I’m not saying sleeping on the deck is running wild but it’s a start.

We had our annual Drama Banquet on Friday night. My last. The kids tied pieces of muslin around my waist fanning out like the points on a clock. They held me up so I could dance and when I would almost fall they’d pull the muslin the other direction. Mac picked my all time favorite dancing tune and I danced. Magic! You have no idea what a joy it is to dance with abandon when you thought you’d already said goodbye to that part of your life. Later, I got to slow dance with not one cute guy ( a la my bucket list) but a line up of cute guys and one hot blond girl. Each dance had it’s own particular flavor of love and I basked in it all. I don’t even know if they knew they were making my dreams come true. Mac and I stayed up that night to the wee hours talking – tough topics but necessary and rich.

I would rather lose sleep in a painful conversation with him than have 8 uninterrupted hours when he’s out of the house.

Later Mac was too sick to go to his Model UN Conference so my friends rallied to take care of him so I wouldn’t miss my plane to Canada. They also went looking at apartments for me in case my other housing options fall through, emailing me a slide show of the apt and the surrounding coffee shops, raw juice bars, etc. Many of the pics include Edith or Kris waving into Wendy’s camera, looking enthused. Wow. If you read this blog regularly, I needn’t tell you that my friends are an elite squad of super heroes that make the Justice League look like pussies.

I’m both prodded into adventures and covered in a blanket of protection – all on account of love. I feel useful when I can give love and gratefully vulnerable when love is offered to me

Love shape shifts. It blindsides. It comes at you from different angles. You think it’s one thing, then it turns up as something else. It’s tenacious. It’s unpredictable and there appears to be an endless source of it.

Love is bamboo.

captain oh my captain

“Don’t it always seem to go, that you don’t know what you’ve got til it’s gone?”
Joni Mitchell

How many times did I think “if only I didn’t have this job, I would have more time for my work?” or “this job is going to kill me” or “it’s impossible to draw boundaries with this job”? I was right on all three counts probably. This semester I co-wrote a full-length musical, wrote several poems and songs, did several gigs ( okay some of them were benefits) and started a screenplay. Plus the blogs. I imagine that’s only going to get easier now that I’ve taught my final class.

I’ve taught my final class. Why can’t I type that without crying? Class ends at 6. Nobody left. “Go away now” I said. “I don’t want to cry.” “But we want to watch you ride off into the sunset on the wheelchair with your red hair flowing” said one of the girls – a poetic nymph who wrote to me that the galaxy had decided to throw a big party and make me the piñata. “I will cry when I pick up the loot” she continued, “ only because the stardust inside is so beautifully, blindingly, brilliant.”

All of their words and smiles are little treasures that expand like sea monkeys when my tears fall on them. Later that night I would come home to check my myspace and another student, a young man, had written a full-length poem which I will immediately put up on the wall with some of my favorites. The line he chose for the book the kids gave me was “loving you is simple, taking in your smile like a child gazing through the night at a mountain, never bothering to wonder what lies beyond.”

They humble me, surprise me, entertain me and occasionally shock me. I always used to accuse them of sucking all my chi but now I realize I was the vampire feasting on their youth and joy to stay eternally young.

We all sat there a little longer, casually chatting. Outside the sun was shining, dinner was waiting, some of them had an improv show to attend or to work on but we just sat. One burgeoning talent played with my hair as she did on the last night of the show. Several of them followed me out to the car and helped Lisa load up the wheelchair ( which fits in the back of a 2 door Honda Civic!!! ) It was unremarkable, quiet and sweet. No tears, just the sunshine and smiles and long luxurious hugs.

Then I drove away from 14 years of my life.

The Wendy Lady

It’s not the web savvy, the inventive updates on the DMC site ( linked here as Driving Miss Craisy) or the fact that she buys the voice recognition software and offers to install it plus more RAM on my computer. It’s not the delicious wheat-free, dairy-free baked goods that keep appearing – green, not green – all scrumptious. It’s not all the sewing – making clasps into magnets, rendering un-wearable clothes easy to navigate. It’s not the rides, so many rides, that often come with a snack or the fact that she’s accompanying me to Greece.

It’s the way she sings and dances her heart out to Earth, Wind and Fire, Ohio Players and Prince. It’s her inner “music yenta” that makes her call and insist I buy tickets to Stevie Wonder, Flight of the Conchords, Herbie Hancock, James Taylor. It’s the way she cried before I had a clue I was really sick and pleaded with me to go to the doctor. Then called again the next AM to nag. It’s how she looks like a hobbit bride when she stands at the front door at Mt. Herman and how she’s raised these two amazing girls I love. How her kindness and unforced generosity has leaked into them so that her daughter offers to move into her sister’s room so I can move in. How that daughter phones her mom who is tending to my broken heart and says “I’m making dinner – tell Carla there’s enough for her to join us.” She’s 13 by the way.

It’s how she holds my secrets, urges me on to write ( always has), comes up with solutions to problems I didn’t even know I had. It’s watching her run through a sprinkler in a polka dot bubble dress, offer to bake me special brownies, and it’s her urging me to be more cautious, use the wheelchair more. “I just want to wrap you in bubble wrap and protect you” she says, then after hanging up the phone realizing I’m too stubborn to pay her mind, it’s how her solution is to sew a bubble wrap dress with purple trim. It’s how I know she’s teary right now as she reads this.

But mostly I think, it’s her dancing.

mother's day

It’s Mother’s Day, 6:27 pm. I have just gone back and forth – do I blog or watch a stupid movie? I blog. The week has been overwhelming – it occurs to me it has been like a play that only I would write: big fun, belly laughs, boundary crossing, deep unbearable sadness and music – all of it coming at too quick of intervals to process it properly.

Last night Mac told me there would be no Mother’s Day this year. He can’t handle my reaction and keep it together to do what he needs to do. I am so proud to have raised a son that can tell me that. We stayed up until 1am talking about all the things that hurt and haunt him. Oddly enough, that was present enough for me. He is the most beautiful tender soul. When I listened to one of the songs I wrote for him today I had to leave the theater so as not to distract the cast with my crying. I love him so much it hurts.

I watched our show one last time and they knocked it out of the park. I was proud of all of us and more than a little sad that I won’t be doing this anymore. I’m really good at it. At the end of the show the kids brought me up for thanks and gave me gifts – not unusual for a play but under the circumstances very huge for me. Lots of tears – mine and my students – some of us sobbing in each others’ arms. I was moved beyond words. They gave me a spa gift certificate ( yay!!) a framed, signed poster of the show and a little book of inscriptions. The inscriptions were beautiful, heartfelt and profound and the comments on the frame were vile and unrepeatable. That is why I adore them. They are an alarming mishmash of angel and devil, irreverent, sacrilegious and holy.

Well, I’ve run out of things to say – probably stupid movie was a better plan.

So this week – final improv class, lithium baseline appointment and the year end Drama Banquet. Then it’s on to Vancouver and my inevitable collapse once I get to my Dad’s place.

What a lovely ride.

yoshi's

At the Yoshi’s benefit, I was approached by J., a beautiful young woman who had studied with me last year. At that time she was undergoing radiation treatment for cancer. So anyway, on Tuesday, she brought me a journal, which she had inscribed along with a heartfelt poem she had written. I was preparing to go up on stage in 10 minutes when she hit me with the news: the cancer has spread all over her body. I looked at this gorgeous black-eyed beauty, so quietly determined, hardworking and subtly funny and the waterworks started. When I watched the movie Young at Heart I was struck by how sad I felt when one of the octogenarians would die . Natural order of things my ass. The loss of a bright soul is hard no matter the age. Then this. It DOES smart worse when it’s someone so young and full of promise and possibility. I don’t know how I got on stage at all. All I could do was cry and stroke her hair.

I had a thought in the middle of the night, which was “I’m going to phone J. and see if we can’t think of a bucket list adventure we have in common and go do it pronto.” I think I’ll do that and report back here.

So the night at Yoshi’s was a complicated mix. On stage I had a ball. If I could live on stage I think I’d be happy almost all of the time. I have the most awesome band and my dear friend Andy did a couple of duets with me that rocked. Mac as usual brought the house down with his singular wit and rapping. It was his birthday, which had to suck for him. All the attention on me once again.

Off stage in the audience it was a delight – watching the embarrassing wealth of talent up on stage, laughing, grooving, drinking it all in. Talking to some of the musicians, especially the guys in my band was awesome and my amazing friend Kaila was a radiant light on stage and the rock of Gibralter off stage. I don’t know how she makes that transition so seamlessly.

The day before had been rough – 4 hours at the ALS clinic dealing with heavy stuff, worrying about where the hell I’m going to live which has become a more urgent concern with the recent health developments and just dealing with the general fatigue and challenges of this disease. I thought at about 6pm that I’d have to not go on but somehow it happened and I pulled it off. Talking with Stephanie (treasured friend and wife of the aforementioned Andy) I came to the conclusion I pulled it off because I was bathed in the beams of love light from the audience which included the Driving Miss Craisy crew, College of Marin and Los Medanos College students and faculty, Albany school people, yoga people, theater friends, musician friends and even a large contingent of the folks from the Forbes Norris ALS clinic!!

My ex organized all the musicians and ran the event and Christina, Edith and Kaila among others did an amazing publicity effort. Thanks to all of them and the participating musicians we netted almost 6000 bucks not to mention cd sales for another 500 bucks! Stephanie and Andy are going to help me get the cd on Itunes and it will be available on the website in a week or so by the way.

SO the performers: David Allen Moss, actor, friend and funny man presided over the event and Mike Zilber ( my ex) pulled together a first class big band for me to sing with. There are too many of them to mention in this blog but they were something else. My dear band from the new cd and the upcoming cd were there being their brilliant supportive selves ( Jon evans, John R. Burr and David Rokeach) Roy Zimmerman – greatest living folk political satirist was there bringing down the house (check him out on youtube and at royzimmerman.com), Kaila Flexer and Gari Hegedus, aka Teslim played a couple of magical and haunting numbers from their brand new remarkable cd, (kailaflexer.com) Mike (michaelzilber.com) brought two bands to the stage – his tribute to wayne shorter band and his Billy Collins Project which has mighty writing in it plus the vocal gifts of Andy Kirshner (andykirshner.com). One of the songs made me ball my eyes out during sound check and made Andy cry on stage during the show was a musical rendition of On Turning Ten by Billy Collins. The musical accompaniment for the song is perfect and Andy interprets it beautifully. It’s a poem which made Mac cry when I first read it to him when he was ten and he said “that’s how I feel sometimes.” It goes like this:

The whole idea of it makes me feel
like I'm coming down with something,
something worse than any stomach ache
or the headaches I get from reading in bad light--
a kind of measles of the spirit,
a mumps of the psyche,
a disfiguring chicken pox of the soul.

You tell me it is too early to be looking back,
but that is because you have forgotten
the perfect simplicity of being one
and the beautiful complexity introduced by two.
But I can lie on my bed and remember every digit.
At four I was an Arabian wizard.
I could make myself invisible
by drinking a glass of milk a certain way.
At seven I was a soldier, at nine a prince.

But now I am mostly at the window
watching the late afternoon light.
Back then it never fell so solemnly
against the side of my tree house,
and my bicycle never leaned against the garage
as it does today,
all the dark blue speed drained out of it.

This is the beginning of sadness, I say to myself,
as I walk through the universe in my sneakers.
It is time to say good-bye to my imaginary friends,
time to turn the first big number.

It seems only yesterday I used to believe
there was nothing under my skin but light.
If you cut me I could shine.
But now when I fall upon the sidewalks of life,
I skin my knees. I bleed.

I love a funny poem with a lethal sucker punch.

Our life is so fragile and so brief and we really are only sustained, held up, buoyed, etc by one another. I have felt that so acutely lately. Yesterday Wendy presented me with a dress she’d made for me out of bubble wrap – a gesture to indicate her desire to protect me from all of the falling down. It’s a divine dress (which makes me feel like a POP star!) but in reality, it is all of you – from the nurse I’ve never met who commented on the blog, to my parent’s high school friends, to former colleagues writing in, to my intimate circle, to my family and all of the aforementioned groups who supported me at Yoshi’s – all of you are bubble wrap for me and for each other.

Here’s how it works: I can’t possibly thank you all in a way that does justice to your efforts – I already hear the Academy Awards band playing me off the stage now. Just know how much I love and appreciate all of you – including those I have yet to meet.

zzzzzz

I'm way too wiped to write both a Yoshi's blog and a limo night blog. My right hand fatigues easily and from what I understand it's best not to push it. I have been one-hand typing 50% of the time but now I'm doing 2 fingers on each hand until I train my voice-activated software. In other bullshit, my falling risk has increased because of the weakness in both my hip flexors and ankles and my OT wants me out of my apt and into a more suitable housing situation asap. This is easier said than done.

On the brighter side, lithium trial screening is this friday and the limo night and Yoshi's were amazing. To learn more about limo night go to:
http://seehowwealmostfly.blogspot.com/2008/05/ten-women-of-certain-age-lets-say-long.html
and read alison's account of the evening. She does it much more justice that I ever could....But play some Bachman Turner Overdrive in the background as you read it.

Balloon Liberation

My Mom sent me a bouquet of balloons in between opening weekend of War and PeaceMeal – The Musical and the Yoshi’s benefit on May 6. Now nothing makes me sadder than watching a bunch of helium balloons slowly die, the air sucked out of them until they sag. They are never as beautiful as they are the day of their inflation. They should always either be inhaled or liberated shortly after that. Mac and I did the latter though I wish we’d saved one for inhaling so we could sing a falsetto goodbye to them as they began their ascent. They were remarkably beautiful flying up into infinity….or the Berkeley campus…. becoming brilliant colorful dots against the blue backdrop of the sky. We attached a note to the last one in case it landed somewhere. A mystery for someone to discover. I would love to find a note like that. How much more beautiful things are when we let them go instead of clutching on to something that used to be.

It made me think again about what a mismatch this disease is for me. Not for me the slow, defeated deflation. I want to be popped so I whir in a wild zigzag jig through the sky like a Looney Tunes character, leaving only freckled skin and red hair in a perfect sheath once all the air as been let out of me, I want to have my strings cut like the happy face mylar balloon we watched cheerfully bounce it’s way into oblivion it’s grin intact. I want to be inhaled, absorbed, devoured, to spontaneously combust, to go super nova. Anything but this slow goodbye to my old life.

My right hand is starting to weaken now. I had two dramatic falls – one a full-on face plant. I’m not ready to give up yet but I can see how it’s going to get harder and harder to have fun. If it gets too sad down the road, I hope people will understand if I prefer to cut the strings and fly.

Tonight a few stalwart supporters and I are dressing in 1970s prom dresses, blaring Foreigner and Bachman Turner Overdrive and driving around in a stretch limo. I will report on the results and I will dance even if I take a tooth out falling down.

Clown Under a Truck

Old habits die hard. In the midst of directing the play I’m currently involved with I was also desperately trying to finish my cd in time for the May 6 benefit and also flying down to LA for a couple of benefits organized by the patron saint of off-beat performers, Jeannine Frank. Now this may not seem like a ridiculous amount to do but don’t forget that fatal illnesses are – among other things – huge time sucks. I returned from LA spent and wondering if I could continue directing the show.

But I’m getting ahead of myself. The benefits were amazing. It featured artists that most people have never heard of but who have racked up impressive bona fides over the years and who I’d go see over famous people any day. As I belly-laughed over the musings of people like Bob Duvak, Betsy Salkind and Ray Jessel or marveled over the beautiful voice of Marie Cain or the brilliant mind of Kres Mersky and all the other wonderful artists I couldn’t help but think what a miracle it is to create works of art. I completely forgot why I was there and just thoroughly enjoyed myself. I feel the same way in rehearsal sometimes. Life will not be ignored. It goes on in all it’s clumsiness, hilarity and absurdity despite our little tragedies and that’s a marvelous thing.

I was trying to explain comic tragedy to my students. We have a new recruit in our play ( in the war movies they always call them “Cherry”) who wears a giant cherry costume with a stem coming from his pith helmet ( or pit helmet – get it?) and who explodes in his foxhole leaving only a bunch of cherry pulp. Another recruit tastes it and says “Fuckin’ Cherry.” It was hard to explain to them that tightrope that we dance on between absurdity and tragedy. I likened it to running over a clown. It’s horrifying and unbearable to have killed the clown and yet …peering over the hood of your car all you see are giant shoes. The paramedic tries CPR and is squirted with a flower. Or maybe a horn honks. Unfortunately as I tried to explain this I went into an uncontrollable laughing fit until tears flowed. I feel like that clown sometimes because this shit is so funny and so tragic.

But back to the benefit. So many beautiful people were there to offer support and love. Jeannine put together two great shows and Danna Hyams ( who is mentioned in 2006 blogs on this site) hosted the second night and made it her 50th birthday party! What a cheery birthday event – an ALS fundraiser. Only Danna is loveable enough to have people show up for a party theme that makes Mary Tyler Moore’s parties look like a laugh riot. I was so deeply moved and had such a great time. The highlight for me was Betsy Salkind doing a joke by a fellow comic that may have horrified other audience members but had me in stitches. It went something like this: Can you imagine how surprised Lou Gherig was when the doctors told him what he had?

That’s funny. I’m going to adapt it and steal it for Yoshis.

It was tremendously difficult to perform the second night – maybe fatigue, maybe being back at a theater in which I’d performed, who knows? Yet despite my challenges, the whole evening was funny and beautiful and deeply moving – Chuckles under the wheels of a hybrid suv – his tiny little bicycle crushed. Jeannine was amazing, loving and indefatigable in her mission to create this wonderful event. It shouldn’t surprise me that she would be like that – this is a woman who works tirelessly for wonderful and talented artists who are unlikely to ever make her any money – Broadway Danny Rose with more discerning tastes or as she puts it “ a cross between Mel and Murray in Flight of the Conchords”. You all love her now too, don’t you?

The work of entertaining has become so difficult for me and yet I’m still good at it. I can still make people laugh and cry – in the same set! I can still come up with arresting visual images and hilarious/horrifying sight gags ( Osama in an I love NY t-shirt). I can still occasionally sing the hell out of a song. It’s work that I believe is valuable and where I believe I can contribute to the world. It’s work that fulfills me. It’s hard work and it’s getting harder and harder. Time to pull out the giant shoes and the squirting flower.

Why I haven't been blogging...

The show I'm directing opens tomorrow night. It's called War and PeaceMeal - The Musical. It's at College of Marin April 25, 26, May 2,3, 9 and 10 at 8pm and May 4 and 11 at 2pm in case you want to laugh your ass off. Also I'm singing on a benefit ( for moi) at Yoshis on May 6 ( also Mac's 16th birthday). More info on that at www.quiltmamas.com/dmc or at www.yoshis.com. My cd will finally be done and on sale at that gig. I hope to be back to blogging this weekend - in the meantime, be well!

Sing With the Voice You Have

I don't actually write poems but I wrote this poem anyway after a brief but inspiring discussion last night with a colleague. Thanks Bill for your support and inspiration.

Sing With the Voice You Have

“Sing with the voice you have,” he told me.
Sing even though it makes you feel like a grounded plane some days.
Disregard the cracks in your voice because they are really the cracks in your soul
And slivers of silver light escape and dance for us.
He quoted the passage “the forest would be a quiet place if only the best birds sang”
And I thought of the 86 year old man on an oxygen machine singing Fix You by Coldplay.
Sometimes the only thing we have to offer is our pain.
Sometimes it is our sweetest song.

Partici-blog Two - the final frontier

I wrote about a wonderful woman in the blog entitled Orange Carpets and Little Deaths…or something like that. She came over again last week and we finalized the Advanced Medical Directive and living will. I was proud to have created a Living will that made her laugh out loud. P is a woman who has helped shepherd many terminally ill people to the end of this life and she has a remarkably poetic and mystical and at the same time brass tacks way of approaching it.

The day began with Kathy bringing my week’s supply of food over, lovingly cooked by Cecilia and very delicious. I had another fall – my first with someone besides Mac around to witness. For some reason it was very hard to have someone around for that. You’d think the opposite. That fall and then ensuing pain which crept in throughout the day plus the meeting with P resulted in one of “those” days.

I sit perched between two worlds. One foot is in the world I have always inhabited. In that world I have been so happy and fulfilled making shows, making music, making love, making jokes. It’s an action-packed universe where I am this energetic force barreling my way from adventure to adventure, making people laugh, connecting, doing. I have always loved this world and I don’t think I’ve squandered too much of my time here. Okay, there was that brief addiction to General Hospital and maybe a little too much time in Target, but beyond that, I’ve lived, I think. I’ve lived.

My other foot beckons the rest of me to join it. The pull to this other, quieter place is seductive. In this world I can read the same poem all night, sit and gaze at the Berkeley Hills for hours, and feel myself drawn to a place where my inner universe completely overshadows the world of the other foot. It is the most amazing journey – vast and infinite and impossible to describe. It’s only mine you see and the closest I can come to a definition is Ps who described it as being akin to a medium – a foot in both worlds.

Trouble is my weight is centered between these worlds. I’m in limbo and its painful sometimes. Letting go of the trappings of the first world, clinging to the things I’ve loved so dearly. Observing my body betray me or maybe not. Maybe it’s leading me to this deeper knowing.

There are times when I’m so excited for this adventure. There are times when I think I will turn into pure love. The other times, the times I long for what is lost, are almost…but not quite…unbearable.

The trick to a happy ending is this: don’t decide the ending ahead of time – leaves too much room for disappointment.

I’ve been thinking about bucket lists lately ( a la the Jack Nicholson/Morgan Freeman movie). When I first wrote about my list it was unrealistic. It included being around for events over which I have no control. My updated bucket list is reassuring because besides the cliché of traveling to places I’ve never been, the rest are very simple. Many involve things I’ve done many many times and enjoyed thoroughly.

The list includes using a hotel minibar in flagrant disregard of the financial ramifications, sitting in front of a roaring fire with a snifter of brandy and driving in a limo with 70s music blaring, sticking my head out of the roof window and yelling woohoo. It also includes driving my convertible one last time, singing in front of a big band and being reckless about love.

If dying well is a lesson in living well, this is what I glean from the list:
1) minibar: don’t let money be your guiding principle. It’s fine to be prudent but if your financial choices stand in the way of your happiness or the well-being of someone you love, spend the damned money.
2) Brandy: make the quiet, peaceful moments as big of a priority as the daily checklist. Trust me – when you know you’re going to die the checklist doesn’t mean jack shit and it sure as hell doesn’t make the bucket list.
3) Limo: have fun.. Duh.
4) Driving: it’s a gift to be able to drive. You don’t know that until you can’t anymore but take my word for it. Enjoy every little thing you do.
5) Singing: well that’s just me.
6) Be reckless about love: why not? Tell someone you love them even if you don’t know if they reciprocate. Give your love freely and without expectation. Love begets love though not necessarily from the place you expected. Also don’t be afraid to write Hallmark-esqe blogs. Corny is also true and if you’re sharing corny shit because you love your readers then who cares if one person out of a hundred thinks you are too precious.


Also on my list – go to Pacific Grove and get up at dawn to watch the butterflies open their wings, slow dance with a cute guy ( this one is time sensitive so help me out fellas!), go to Disneyland with Mac ( no really!) and love, love, love all of you.

OKAY – so here’s the homework: Hit comments and leave your bucket list. Then make plans to do something on the list and report back with a comment. By the way folks, the comments are the best part of this blog. Check them out and be prepared to be amazed!

Rolf

I went to a memorial today for Rolf. He worked in the box office at my college for 10 years. I was already in tears before the service began, looking at the slide show his son had compiled. Here's the little boy in Hamburg who walked 200 miles home after the war, ducking American and Russian soldiers as well as artillery planes. Here's the young bride and groom delirious, hopeful, in love, the entire family on the beach - him lying on his side, her head resting on his ribs, a look of sheer content on his face, the children all nearby. When I looked at the photo I could almost feel the sun on his face and the quiet glow inside him as the woman he loved reclined on him and I wondered if in that moment he had ever so briefly stopped to survey his life and felt satisfied. There was one slide that really got me - he and his wife intently playing chinese checkers not even noticing the camera. The little moments, so important.

Later in the afternoon the daughters and son would recall the man who would drive all day for them, who would carry them on his shoulders, who loved listening to music, who taught his son the value of work and of just showing up and once again it hit me like a thunderbolt that all this running and searching and chasing we do, all our accomplishments, all our acquisitions are nothing compared to those moments - walking home, lying next to someone you love, showing up for people, driving them - these are the things that we remember about someone who passed - these are the real accomplishments.

There is so much I wanted to accomplish in my life that I didn't. I feel like my performing career was just taking off when I got this diagnosis. Now I can no longer do my show at all and yet all those little seemingly insignificant moments in my life are still there regardless and I can call them up whenever I need them. My son telling me the latest current events, a friend I haven't spoken to for awhile on the other end of the phone, walking to the bus stop to meet my dad after a long day of work. Pure gold.

The play my students and I are creating is based on a play by Aristophanes in which a man goes up to the heavens to persuade the gods to rescue Peace who has been buried by War. He succeeds. In our play, however, Peace is not buried. She is right there where everyone can see her. They just don't see her. And in the end, our heroine goes to great lengths to find Peace and is literally leaning against Peace....but doesn't notice. Life is like that I think.

This n' that

I made it through the night. Sounds like a song by Neil Diamond or someone like that. It’s a wonderful thing to sleep 8 uninterrupted hours. Besides the stomach issues which are better but still annoying, one thing that wakes me is the macabre dance of the fingers on my left hand. They jerk around like William Dafoe dying on the battlefield in Platoon only in this case there’s no Barber’s Adagio for Strings to accompany their poignant jitterbug. They seem to keep a schedule so never more than one finger is going nuts per day. I don’t know if this is a good thing or a bad thing. The thumb is particularly vexing since it jerks out sideways as if to defect from my hand. My attempts to stop the twitching are right out of a Charlie Chaplin film only in the middle of the night, I ain’t laughing.

Around six am comes the leg cramps, which go away as soon as I stand on them but some days it takes longer to get out of bed than others. The other morning I needed Kaila’s help (she kindly slept over a couple of nights) since I rely on stomach muscles to vault myself into a seated position at the edge of the bed and my stomach wasn’t having any of that.

I read last night that even positive stress is bad for ALS and weakens the body. I have no doubt that directing this show is taking its’ toll but what is my alternative? Give up all creative expression except for this blog? Too too sad. No thanks.

I love the process we are undertaking. It is going to be a great show – guaranteed to have several huffy Marin patrons walk out mid performance. My delightful students suggested I park my scooter at the exit door and look sad with a sign saying “Don’t leave, I have ALS.” They also suggested that I pop out of a coffin at the end of the very funny opening number saying “What? Too soon?” They get through the tremendous challenge of having a woman with a fatal illness falling over as she tries to demonstrate a jazz square, or not having enough air to finish a sentence or inexplicably bursting into tears ( an ALS symptom) by testing the boundaries of humor. Just what kind of joke IS okay? I welcome all of them if they’re from people I love.

Yesterday I went back to my therapist after 2 years away. She is treating me for free which is astonishing to me. I think what we will work on is how hard it is to take in all of the kindness I am receiving and not be able to reciprocate except with this blog. I think the blog works best for me when you all write in a la the Partici-blog and share something that is going on for you. The lady whose son joined the Marines blew me away. Hearing the little things that light your day or present a challenge and knowing that so many other people are reading your comments is nourishing. We are weaving together this community through this instrument of the internet which can be such a source of alienation. Write a comment about anything you want. It can stay anonymous. Keep writing about what makes life worth living ( have you checked lately? The list keeps growing) and I’ll think of a new partici-blog and post soon.

IN other news, I’ve mentioned this before but we’re drawing close to the actual dates: if you know people in LA, please tell them about the fundraisers happening on my behalf. The performers are all really funny and I’m going to get up there and sing a bit and try to make people laugh.

For info on all the fundraising efforts you can send people to www.quiltmamas.com/dmc - a website started up by Wendy ( one of my angels) and the other details are here.

Just the Facts: A CARLA-BRATION for Carla Zilbersmith: A Special Variety Night to celebrate & support a friend and artist in need!
When: Saturday, April 12 at 8pm
Where: Steinway Hall @ Fields Pianos * 12121 W. Pico Bl. (one door w. of Bundy * Level P2 under the store) * Park free in lot!
Price: $25 suggested donation
Reservations & Info: Jeannine@FrankEntertainment.com or (310) 471-3979

When: Monday, April 14 at 8pm
Where: The Hayworth Theatre * 2509 Wilshire * Los Angeles 90057 (between Rampart and Alvarado)
Price: $25 suggested contribution
Reservations & Info: www.thehayworth.com or (800)838-3006

Here I sit, broken hearted….

It’s 3 o’clock in the morning. It’s quiet except for beeping noises down the hospital corridor, the occasional nurse calling out a question to the one on-call doctor. Most of the rooms are empty. Edith and I sit quietly, occasionally launching into the kind of conversation you can only have in the pre-dawn hours. Quiet. Slow. True. We talk a little about the emergency room at Children’s Hospital where she spent her share of time when her son had leukemia. We don’t talk about it often. It seems to me like another lifetime. I have that luxury since it wasn’t my kid who was sick. Now he shaves and writes research projects on octopi.

Edith looks unjustly attractive and well put together. Way too nice for someone whose friend has called them up at 1am and said “ I need to go to the hospital now” to look. She wears her usual unflappable look (though I’ve seen lots of flapping in the last few months – an honor) and as Kris says she exudes calm. She knows how to hold the silence and when to break it to make an always useful suggestion or ask the perfect question.

“Please go” I implore her several times but I’m met with a look that is both loving and condescending. As if to say “if you think I’m leaving you’re insane.” Sometimes no look at all, just a quiet grin or chuckle. She’s like that. I try a few strategies until finally success – she’ll call Lisa at 5 and go home, rest then catch a nasty cold from staying up all night. I know Lisa will say aye and I will take her word – but Lisa is another profile for another day. Today I will tell you about Edith.

I'll tell you about a port in a storm, a blanket of calm over a scary and profound evening, full of tremendous, childbirth-level pain and sweet moments of connection and the utter hilarity of scab nurses. I think of myself as pretty stoic but it was a tough tough night made tougher by the indignity of the circumstances. All this fuss for a little constipation. That’s right. Tried to shit but only farted. ( now you understand the title of this blog, don't you?) No appendix, kidney stones, pancreatitis – just a rilutek/als side effect – a new fun thing to watch for.

But back to Edith. No vibe about waking her up, leaving her kids alone. She just says “I’ll be right there”. And she is. Edith deals with financial issues for me, drives me and Mac around fixes my jewelry, frames my pictures, calls social workers and healthcare professionals, makes my thank you cards, shops for me and most importantly just sits with me if I need to cry. One day while at the bank setting up a fund for my medical needs she says to me “ I thought of something I can do for you…” “Well it’s about time you chipped in” I quipped. I mean really – when do these women stop giving?

Edith is the glamour puss of my group of friends. She always looks perfect. Perfectly accessorized, perfect color combos – a walking work of art. She doesn’t die her gorgeous black hair so it is streaked with silver and looks glorious. She never wears contact lenses. She looks the same with or without makeup ( I found out that little tidbit at 1am….the bitch!) and she calmly dispatches her self-imposed duties with the élan of Grace Kelly. She also has a wicked sense of humor and is not afraid to deliberately run a red light when her friend is in pain. She runs red lights in a very dispassionate way (“oh this is silly.” Then Vroom!) Very independent movie.

Edith was there the day of the diagnosis and told me she and Kathy were there with me all the way. I knew they weren't just words. I love how Edith smiles impishly about her kids even when she's reporting that they are doing something less than adorable. I love how her husband has just stood in my general vicinity of late and I've felt his support even though we haven't exchanged many words. I love that her parents and sibs have supported me even though her sister is the only one I really know that well and all I really know about her is her penchant for cuddly kitten T-shirts and 85 year old lovers.

I like that Edith finds the same people insufferable that I do. Just before administering the morphine, the scab nurse at the hospital said “Praise the Lord, Jesus and Mary “ or something to that effect with this smile that made her look like she was a cartoon character that had just been hit in the face by a two-by-four. I looked over at Edith who seemed as alarmed as I was. I don’t want someone religious putting drugs in my arm…..unless she knows I’m still a sinner and I’ll be going straight to hell if she isn’t very careful….but I’d hate to think some chick thought she was doing me a favor to send me to Jesus. I could tell Edith was on my side on this one and understood the mantra I repeated over and over :“most hospital deaths are a result of medical error. most hospital deaths are a result of medical error. most hospital deaths are a result of medical error.”

Speaking of Jesus, I had this image of him reading The Secret up in heaven and all the other gods making fun of him and him saying “Hey, if it’s good enough for Oprah, it’s good enough for me.” I’m going to put it in the play.

There are other magic moments to this bizarre evening: Lisa lovingly massaging my feet and hands, brushing my hair, putting sweet smelling lotion on me and later me wiping a tear from her cheek, Kathy sweeping in with such purpose and strength that the X Ray tech said admiringly “Man, she’s on it!”, Natasha the nurse hitching her pants down and shirt up so I could see her “Made in Canada” tramp stamp ( that’s a tattoo on the low back for you older folks), the homeless man leaving robe untied in back with the IV still in his arm shouting “Ya’ll be hearin’ from ma’attorney!”, Kris offering to be the go-to gal in the ever-daunting 4 am hours, Kaila overcome, crying “Oh my god, your dad wrote a blog comment” and giving me her amazing and haunting CD dedicated to me ( and someone named K. Mell which sounds suspiciously like a rapper name) and finally, lying in Alison’s lap while she stroked my hair and cooed to me softly.

Kathy and the Post-it Vandal

I got yet another email remarking on how amazing my friends are. This one from an old friend whose emails have been a new light in my life the past few days. It gave me an idea to profile different members of the Driving Miss Craisy group since they are such amazing women. We begin with Kathy because she was very silly yesterday and made me laugh til I pulled a muscle.

Let me try to explain Kathy S. if I can. Remember how the soldiers in the Nam were cautioned that “Charlie” was everywhere and to be afraid of the harmless old lady, the sweet little kid? Kathy has that level of stealth. She appears to be a normal suburban mom. She has two beautiful, polite and good natured children, a charming and handsome businessman husband who chuckles benevolently at my offensive jokes, a gorgeous and immaculate home and a hybrid SUV. Her hair is perfectly in place and tastefully styled, she’s slender, beautiful and well-dressed – achieving that balance of youthful but not trying too hard to be youthful. She plays bunko.

Don’t be fooled.

Kathy is in reality an irreverent, wickedly funny weirdo. This is a woman who (along with her henchwoman who I’ll write about another day) bought me an inflatable redheaded doll to give to my then-husband so as to free up my time. ( the doll ended up usurping me in the holiday greeting card the following year…we clothed her don’t worry) Kathy is forever plotting little practical jokes all of which amuse me to no end but yesterday’s was delicious.

Kathy had driven Mac and me to our rehearsal 2 days ago where she had witnessed me stopping Mac from putting graffiti on a sign. Now Mac and I were the ones who thought of crucifying a giant easter bunny on the huge illuminated cross that sits on public land near our home ( a protest bunny – like whatever happened to separation of church and state? ) I have no problem with public protest but somehow I am jarred by graffiti. Kathy suggested post-it notes, which made us laugh out loud at its sheer lameness as an act of civil disobedience. The post-it vandal.

Well the next day, she shows up with a bag of large, extra-sticky post its, a thick black marker and a mask…made from a giant post-it with two eyeholes cut out. Mac donned the mask, rolled on the ground a few times to his target looked stealthily in both directions and placed his protest post-it on the offending sign while we cracked up. The post-it vandal concept is actually quite ingenious. All over campus I saw silly post-it messages signed “the post-it vandal.” Add that to the life-worth-living list.

I love the way Kathy’s eyes twinkle when she or someone else has made a wicked joke or practical joke. Her whole face is illuminated. I love the way she swoops in and puts her arm into the arm of a homeless man and gently, lovingly guides him from a club where he’s unwittingly become the center of a mounting scene. I love how she takes a project on ( now mac and me) like a mission and how indefatigable she is to that end. Or the way she devours a book. Or plans a public pillow fight. Or clips articles about brutal dictators for my son instead of being horrified that he’s interested in them.

We are none of us what we seem. We are an astonishing and often irritating mix of contradictions, surprises and revelations that take one’s breath away.

I want to put a post-it somewhere – maybe the pedestrian overpass by University Ave, maybe the boys bathroom at Bentley, maybe outside a Bunko game she’s attending that says I >heart< Kathy! Signed, the Post-it Vandal.

Stay tuned for more Dmc profiles in the future.

Kim's Essay

My friend Kim is a wonderful writer and actress and mom. She and I have collaborated on a few projects and it's always been a great learning experience for me as she's quite brilliant. Anyhoo, she wrote the essay below and I have her permission to share it here. You may notice a few differences between her account of boogie boarding etc and mine but that's one of the things I love about stories - once you tell them they don't belong to you anymore - they become part of something we all share and remember the way it serves us. I love Kim's take on all of this craziness - she is fearless and never backs away from the real shit. Anyway - here's her piece:

Life is Short by Kim Porter

If ever I’m in a cemetery I seek out the children’s graves. They’re easy to spot from a distance as their silhouettes are often softened with heaps of sun-bleached stuffed animals, whirling pin-wheels or holiday decorations. I like to stand in front of the headstone and try to absorb the details. “Candace Bell March 15, 1987- July 14, 1992. In our hearts forever.” Counting on my fingers I work out her age. She was only 5. Someone has left a tiny porcelain bell here. I ring it. I bring her first to life in my mind’s eye and then to death. I calculate how long she’s been gone. 16 years. That’s sad. Stale grief is lonelier; fewer companions remain to carry the torch. Somewhere out there, Candace Bell’s mother and father alone, still long for the weight of that 5 year old in their arms. Or perhaps their marriage dissolved under the burden, and now they must walk their lives with a lump in the throat that can never be spit-out nor swallowed. I cry freely now, and move on to the next head stone, and, after that one, another. If permitted I will gorge myself on other people’s grief until my face is fiery and swollen and I have to breathe through my mouth. I’ll weep until I’m punchy or until my companion’s tolerance for this spectacle wears out.
Surprisingly, some people don’t find vicarious grief as rewarding as I do. My husband for one.
My husband thinks I’m out of my mind. He can’t appreciate the curative effect I experience from dwelling on the macabre.
“What if one of our children died?” I often ask him. “How would you feel?”
“I don’t know. How would I feel? Awful, I guess.”
“But, would you be devastated?” I probe. “I’d be devastated.”
“I don’t want to think about this.” He sneers, irritated.
But, I do. I got hooked on the wake-up call of tragedy when my estranged father died suddenly when I was 29. I instantly knew so many things I’d never thought I needed to know. For instance: anger isn’t the opposite of love, life is too short to tolerate the tantrums of self-absorbed co-workers no matter how statuesque they are, and you can never get back the years squandered waiting for life to commence. I woke up. I was still alive. Sure, the grief was crushing, but the gift was brilliant. I was grateful, actively grateful, finally grateful to be alive.

Life is short.
But, so, apparently is my attention span. Because, before I was aware, I was standing in the kitchen bitching that nobody’d started the coffee yet, and who left these legos for me to tread upon and, why can’t I just get a break from the children’s persistent chatter? Here I was again, taking my life for granted.
So, I’ve learned to look at the post-cards of missing children delivered in the mail with the Safeway circular and imagine if it was one of mine. I read news articles about the tragic and untimely deaths of innocent people. Oprah is a good source for pathos, as are AP photos, tornados, school shootings, car jackings, drunk drivers, and attacks by roaming bands of pit-bulls.
Maintaining a state of gratitude for more than a few moments at a time is hard work. My husband doesn’t understand that I don’t enjoy, not entirely anyway, having to conjure virtual grief by imagining the unimaginable, but somebody’s got to keep us loving life.
A few weeks ago my friend took her teenaged son to Mexico to go boogie boarding one last time before it was too late. The way she described it, her board and her gloved left hand were out-fitted in Velcro. She hobbled out into the surf, her boy bolstering her against the battering waves. For more than an hour they inched into the ocean. When she was finally deep enough to paddle she discovered she could no longer paddle. And so, amid tears and laughter, she had to acknowledge it was already too late to boogie board one last time. So, they went to a cock-fight instead.
My friend was diagnosed with ALS shortly after Halloween when she went to the doctor with a stiff thumb. By St. Patrick’s Day she’d said goodbye to walking without braces, driving, the use of her left hand, swimming, zipping her favorite pants, closet doors, and hitting the high notes. In the near future, as futures go, she will say goodbye to sitting unassisted, chewing and swallowing, communicating with her voice and ultimately, breathing. And then, my friend will say goodbye to life.
My friend is no longer burdened by the petty struggle to appreciate life.
I wish she were.

The Trouble with Alsi

A lot of the ALS handbooks tell you to get an electric wheelchair before you need one. My occupational therapist also suggested this and I of course resisted. I am a youngish, good looking, dynamic person and my self-image collides with the image of myself in a wheelchair. It’s tiring to direct a show however, and so I have surrendered once again to this disease which is meaner and more spiteful than a middle school girl. I think I’ll call her Alsi. Bitch.

So the reason you need to get a wheelchair before you need one is learning curve. The scooter I’ve borrowed can be set to turtle or rabbit. I of course prefer rabbit but there’s the problem of head on collisions with elevator walls, chiding sons and furniture, which refuses to get the hell out of my way. Day one I left a path of debris in my wake. My students cheered when I entered which made Mac feel bad. “They should have just made a joke at your expense,” he said “ I know you hate that ‘go wheelchair girl’ stuff.”

Here’s what I know for sure: 1) wheelchairs are preferable to scooters. Scooters are for old ladies and they are harder to parallel park – it’s an SUV compared to my dear Miata. Ain’t no way to pass a scooter off as a Harley – or even a Harley compatible 2) rabbit is more fun than turtle even if you crash 3) the horn on these things is useless. I use it to make the beep beep sound when people back up a truck but it won’t get anyone out of my way. I need to rig the wheelchair I will soon own with something louder – a bike horn or a recorded voice saying “I’m sorry Hal, I can’t do that” or something like that. 4) maybe a bumper sticker that says “if you patronize me, I will haunt you.” This is my latest and I think most effective and all purpose threat.

In other news I had trouble getting down to sit on the toilet at 4 am the other morning and I blamed Alsi only to discover that somebody had left the toilet seat up. Since Mac was at his dad’s that night I had to conclude that either someone had snuck in just to lift the seat because I don’t have enough to complain about or I had left my own seat up. I think it was the latter which means I am so lonely for the company of a man that I’m leaving my own damn toilet seat up! That’s funny.

In other news, saying goodbye to stylish deck chairs I can no longer get in and out of, resolved to wear my cell around my neck because I can’t bear the “I’ve fallen and I can’t get up” necklace and getting back on the horse as it were to try singing again next week. Also going to do the improv freeze at the SF Ferry Terminal. That should be fun.
Oh yeah, and I’m going to spread mean rumors about Alsi to all the other girls. That’ll show her.

more on partici-blog

Okay, so the thing is I’m greedy. I hungrily open the email for your blog comments and thrill each time a list of “life worth livings” comes in. I want more, more, more! I love to hear about the tiny moments in your lives that are too enormous to comprehend fully. I love picturing you taking a moment to think of these things, maybe hugging your kid afterwards and when I read them, I’m in the desert or reading that novel or crawling into bed with your boyfriend ( Hey, any port in a storm!) Keep on writing those lists please! They keep me going and fill me with deep joy. Scroll down to the next blog and hit comments. Just do it!! Also if you haven't read the comments, they're out of this world! Everyone who reads this blog apparently is a poet.

I leave you with this from OUR TOWN by Thornton Wilder who puts it as well as anyone, methinks. Emily has come back to earth in this scene. She's already dead. Her mother can't hear her.

Emily: …but, just for a moment now we're all together. Mama, just for a moment we're happy. Let's really look at one another!...I can't. I can't go on.It goes so fast. We don't have time to look at one another. I didn't realize. So all that was going on and we never noticed. Take me back -- up the hill -- to my grave. But first: Wait! One more look. Good-bye , Good-bye world. Good-bye, Grover's Corners....Mama and Papa. Good-bye to clocks ticking....and Mama's sunflowers. And food and coffee. And new ironed dresses and hot baths....and sleeping and waking up. Oh, earth,you are too wonderful for anybody to realize you. Do any human beings ever realize life while they live it--every,every minute?

Stage Manager: No. (pause) The saints and poets, maybe they do some.

Emily: I'm ready to go back.

partici-blog

I have a cool idea, which is for everyone who reads this blog to write a comment with one or more things that make life worth living for them. It can be something as simple as your morning walk, key lime pie or an episode of the Sopranos. I don’t know what to do with them beyond recording them and putting them all together, but I think it would be fun.

My list is infinite and grows every day. Maclen, soy chai lattes, moments turned into snapshots because they’ve yanked me into now, little kids, immature people who behave like kids, stupid stuff on youtube, my ever expanding circle of beloveds, music, tears, being silly, being really silly, my deck, the color orange, being loved, making something, Maclen’s singing, yoga, walking, singing, Gina selling her bra on the golden gate bridge, listening to great singers, AWOL – past and present, the LK travel agency, the magic that happens when a group of women get together to help someone, the magic that happens when a man and a woman get together with no benevolent purpose in mind, run and gun basketball, some of the magic moments of Bird, Magic, Kareem in their heyday and recent heartbreakers with folks like Nash and Amare, poems, emails from my dad, El Ninjo Tarantula, Maclen’s laugh, funny people, the moment you get an idea, sleepovers, fat babies, Annabel saying “Auntie Cawla”, shufflin’ the IPOD, lavender oil, middle-aged women who aren’t afraid to play dress-up, singing improvised tavern songs in a tavern, a clear warm night, John R’s quips, green wheat-free, dairy-free baked goods, typing, Jason singing a Sinatra song, creating stuff, gerber daisies, Shakespeare in Love, foot rubs and saying a joke at the same moment Maclen makes the same joke and so much much more.

Okay, now you.

The Audacity of Hope.

I have to admit, he grew on me. It took a long time too. First off, there was the other guy: assertive, direct, with a movie star smile. The other guy was almost too good looking but his mind – wow! He could best every guy in the room with his youthful grin and intellectual prowess. How could I possibly give my heart to the tall skinny guy who seemed almost too conciliatory, too nice. I have always been suspicious of the motives of nice men. I can’t bring myself to believe they aren’t just tricking me.

I took me a long time to face that it was over with the man I had originally chosen. I ignored all the signs and kept hoping that it would work out. It didn’t. It was time to settle. I turned my attention to the skinny guy. I reluctantly acknowledged his funny lines, his quick responses, his sincerity, though I still wasn’t quite sure about him. Someone would compliment him and I would say “yah, but…”

I remember the moment when it started to turn for me: it was when I saw him dancing, oddly enough. He was totally in his body. He was sexy, self-assured but not too full of himself either. He was one with the music and I totally believed him. “Okay,” I thought “time to get to know this guy better.”

Truth be told, I was scared. I have been let down so many times before by so-called nice guys – a promise of something real dangled in front of me only to be snatched away by a moment of dishonesty, compromise or cowardice. At least with the bad boys you know what you‘re getting. Guaranteed heartbreak – no surprises. Bad boys are seductive. They’re primitive and overly macho but absolutely certain about who they are.

Then a couple of days ago came the speech and folks, I was hooked. When he speaks sometimes, that skinny guy grows bigger than this whole wide world. He eloquently addressed the race issue in this country in a way that no presidential candidate has ever done before. He condemned the words of his minister while acknowledging his affection and ties to the pastor and pointing out the complexity that is in all of us. He was honest, direct and real and it showed in every gesture, every eye movement, every beat of his speech. If he were an actor I would have said it was a perfect performance but that’s the thing about him. He’s not an actor. He’s a man. He’s a real, flesh and blood human being. He’s the kind of person you hope will run for President but never does. He’s brilliant but he has a heart. He refuses to use the Democratic playbook and that may be why he’ll pull this off.

I don’t know if he will win but he’s won my heart, which has been broken every four years since I worked for the second McGovern campaign, which has calcified out of fear that my giving my heart to a candidate guarantees that he’ll lose, which still longs to believe in a political figure just one more time.

This is why finally, happily, and with cautious optimism, I am supporting Barack Obama for President.

War and PeaceMeal - The Musical

I start rehearsals for my last College of Marin show tonight. We had our first production meeting yesterday and I was in the zone – laughing, joking coming up with utterly scandalous and inappropriate ideas ( my favorite kind) for costumes, plot, staging etc. I was on. Then something shifted and I was scared. I could feel my muscles fatiguing, my breathing getting more labored and I thought – can I do this? I mean I could barely do this when I was healthy!

I don’t know how to downshift and I need to learn fast. But in truth I’d rather not learn. I love the adrenaline rush you get from creating something from nothing, from herding unruly cats and creating something magic through sheer force of will. It’s a rewarding thing and like all rewarding things, it’s hard as hell.

Last night I likened it to having a kid – 34 hours of pain and nausea and great discomfort, years without 8 hours uninterrupted sleep, all-nighters with the croup and for what? For this walking miracle whose mere presence makes life worth living, that’s what. I would go through all of it again for just one more day with my boy. Everything worth having seems to require a certain amount of pain and discomfort. It makes the simple times so very very sweet, the hard fought accomplishments such treasures. I want to experience that again.

I want to make an audience laugh from their bellies until they leak. I want to give them a moment that takes their breath away. I want them to find themselves discreetly wiping away a tear. “You see I want a lot" said Rilke "perhaps I want everything:the darkness that comes with every infinite fall and the shivering blaze of every step up” and why not?

In the meantime, everywhere I go there is love – in places both expected and totally unexpected.

You

Since there were so many comments on the last blog I decided to write a blog in response.

1) Your blog comments, phone calls and emails were overwhelming. I will have these words ( and all the others you have written) to cherish for the rest of my life and then Mac will have them and he will know that I was surrounded by love and I was so damned lucky. Receiving all of these responses made me smile and weep, sometimes at the same time. Nobody really knows how big of an impact they have on someone’s life but rest assured you all have had a HUGE impact on mine. I’m humbled in the face of such compassion.
2) The gigs coming up are: April 12, 8pm Steinway Hall, LA ( it’s a benefit organized by my agent and called “A Carlabration”. I’ll be doing 15 minutes at the end); May 6 – a benefit at Yoshi’s in Oakland organized by Mike Zilber, my “babydaddy” – again I’ll be doing a few numbers and June 14 at the Jazzschool in Berkeley – that one is all mine with my fabulous band from the cd that I mentioned in the last blog. My son and my students and I are also collaborating on a piece that will open at College of Marin on April 25 and run for 3 weekends. It's a musical comedy about the Iraq War and other stupid things. This will be my last show.
3) I had the same vocal problems in the studio today but I didn’t let it get to me. Some days you break down like Bob Dylan’s little girl and some days you just say, “okay you cocksucker gods, bring it on.”

I am feeling all your hugs and I’m drinking in all this love.

A truly depressing blog only for the strong of heart

I’m in the studio this week recording songs for a new record. Not the record that is coming out any time now, a record to stay in the cans for a year or so and to be released at a later date. The idea is I don’t know how long I’ll be singing so I need to get this stuff done now. I have had more than one moment during the session where I haven’t been able to make my voice do what it is supposed to do. It may be that it’s harder to control my diaphragm or it may be that I’m just weak and tired. Either way it is a peek into the distance of an impending goodbye and it cut deep. How will I live if I can’t sing?

So much of the time in the studio has been magical. The quips of the piano player, the inspired brilliance of the musicians, the support of these dear guys who are such wonderful human beings. I love the moment when a group of musicians happen on an idea all at the same time. There’s nothing like it, except maybe a first kiss when you’re not sure who initiated it. Pure magic. The toll of course is that it’s taking every bit of me just to do this.

Today I told Jon Evans, the producer/bass player that I didn’t know how to be professional in the studio and have ALS. The day had begun with me trying to wrestle with my new leg braces. It took a half an hour to get them on and a lot of tears. Plus they’re ugly as sin and don’t accommodate a lot of my clothes and shoes. I will say that they make me walk MUCH better so there’s that. Later at the studio a car salesman came by to show me a wheelchair accessible PT Cruiser convertible. I thought it would cheer me up to see it but then he told me he had driven it down here for a man with ALS but in between the ordering of the car and the delivery the guy died. So did my good mood. I went back to the studio and tried to sing but the notes just don’t come out how I want and one song was so hard to do energetically that I had to stop. I can’t even get through this song that I’ve sung so many times. It’s times like this that I don’t know if I have the emotional strength to get through this bitch.

Jon was sweet and encouraging. He explained that this was hard for him too but being from New England it doesn’t show. He also pointed out that while I can’t do what I want to with my voice I can still do more than a lot of other singers can. It’s just a matter of shifting perspective. He put on the next song and told me he knew I could do it. I went up to the mic and put on the headphones and there’s his lyrical bass lines and David Rokeach’s sensitive drums having a conversation with me and John R. Burr’s breathtaking piano and these lyrics:

When this old world starts a getting me down
And people are just too much for me to face
I’m gonna climb way up to the top of the stairs
And all my cares they drift right into space
Oh on the roof it’s peaceful as can be
And there the world below it don’t bother me
So when I come home feeling tired and beat
I got to go up where the air is fresh and sweet
I get far away from the hustle and crowd
And all that rat race noise out on the street
On the roof it’s the only place I know
Where you just have to wish to make it so
Let’s go up on my roof.

This is the part where I always tell you about how I felt some sort of light or redemption – a moment of clarity, of being fully awake. And I did. And there was. I try to write these moments poetically so we can all find some beauty in this shitbag. But I don’t feel like writing about that today. Today I want to write about being scared and sad.

I wonder sometimes about spilling my guts on this blog. How is it for my family whose grief is as big as mine? For my friends who give and give with no hope of repayment? Is it easier to envision me the plucky fighter with the wicked wit who doesn’t have these days? Are my tales from Lake Woe –is-Me getting old? I wonder these things and while I try (and usually succeed) every day to laugh and have genuine fun, here on this blog I think it’s right that you know that I’m struggling just like everyone who loves me is to make sense of all of this. I haven’t even begun the tough part of this disease and it’s already so much to hold. Most days I laugh a lot and don’t cry at all. Most days I am filled with awe and gratitude. But today I feel very small and I just want someone to hold me.

I've got a girlfriend that's better than that....

I’m an open wound today. I said goodbye to my two oldest friends, Janet and Moira who traveled from Powell River, B.C. and Seattle respectively for a surprise reunion. There is no one quite like your childhood friends. I see that with Mac and the kids from the Mom’s Cult. You can be whoever you are with your childhood friends, not talk for years, have nothing in common – you name it – and they are still your friends.

Moira and Janet are polar opposites but the love between them is too strong for that to be a hindrance. I was the bridge between nature walks and pedicures and loved my role. So picture if you will, 3 misfits who through some miracle find one another and instead of retreating into their lonely imaginary worlds, collaborate on a collective imaginary world full of dancing, plays, imaginary worlds of people made out of cotton from pill bottles and glue on eyes, formal (19th century) tea parties and lots of Beatles music. These girls saved my life. At a time when I didn’t want to be alive at all, they were there even though we’d separated to three different high schools. And here they are again at a critical juncture in my life making me laugh and cry. They’ve both turned into amazing women with wonderful and rewarding lives but I can still see those two little girls who for reasons no one can remember called me “Carla Fay.”

Thursday was a banner day. My friends for a mere 15 years met my friends of 35 years and they all set about to organizing my closet so that the clothes that are easy to put on are easily accessible. I mentioned that the closet doors are getting hard for me to open and close and boom – off they came. Janet and Kathy jumped right to it. You can’t imagine the determination and industry in that room. It was almost terrifying. Edith has this uncanny sense of color and style, Kris has great organizing skills and can make a closet look like a work of art, Kathy has a sense of purpose and ability to get things done that would shame most 4 star generals and Wendy….the ultimate multi-talent – updated the website and took home a ton of clothes to adapt AND brought me cute clothes and wheat-free baked goods. I think she wants to fatten me up so she can eat me. I loved watching how Moi and Janet just jumped into the fray, sewing, ironing, making snacks and how my other amazing friends just welcomed them into the fold.

I always admire writers who find the poetry in these scenes. Scenes of women just simply being there for one another, showing up without expectation of payback or acknowledgment. Of women who accept one another and love the flaws, the contradictions, the baffling aspects and quirks of personality. I look back on my account of the closet party and think “How could I tell this in a way that conveys the well-choreographed dance that took place in my bedroom that day? How could I write the inexpressible beauty of the moment when I cried to say goodbye to a pair of pants and didn’t have to fear judgment or explain such silliness? How could I find a way to tell you, dear reader, how utterly beautiful these 6 women are inside and out?”

I have resigned myself to the fact that odds are I will probably never have another long term relationship with a man but I have to say there has never been so much love in my bedroom as there was Thursday morning and I wouldn’t trade that for Johnny Depp.
( Johnny if you’re reading this, I’m sure we can work out some sort of arrangement, I was just being rhetorical.)

There is no way I can ever pay any of these women back. Nothing I could possibly do would suffice. All I can do is try to find a way to write them into your hearts.

Pelea de Gallo - Chapter 3 of the Sayulita Chronicles

The hand written sign in the center of town reads “Pelea de Gallo 12:00 Domingo. Traiga su Propio Gallo” or in English: Cockfight, noon on Sunday. Bring your own rooster. No indication of where said cockfight will occur.
“Let’s go” I say.
“Are you nuts?” laughs Mac. He knows the answer, later confirmed by his best friend who asks his Mom " Has Carla lost her mind?"
“Okay, let’s do it.” Maclen shakes his head in bewilderment and laughs. I point to a man in a ten gallon hat, stringy moustache and a row of gold filled teeth – not rapper teeth mind you – just gold fillings with white tooth surrounding each one. He could be one of the dead guys or soon to be dead guys in No Country for Old Men. “He is surrounded by apparent extras from that movie.
“Go ask him where the cockfight is” I say.
“NO WAY”
“Okay then tell me what to say”
Mac fixes me with a look. He’s wondering how I will offend them if I ask. After all, I have been saying goodbye to everyone we meet by using one word – “enough!” I thought I was saying “later” as in "later, dude!"
“Fine, I’ll go” he says
Mac asks Gold Incisor “Donde la pelea de Gallo”
“Asi”
Everything in Sayulita is “that way”.
“Ask him to be more specific”
“Ju are luking for dee cokefight, Amiga?” Gold Incisor is joined by Jeri Curl man who wears a Corona muscle shirt and speaks a little English.
“Si!”
“That way.”
“I know, but exactly what does that mean?”
“To the freeWAY. Take a right. It’s on dee left. “
These directions, by the way are completely false.
We ask people along the way for slightly more specific instructions. NO one seems to know. Alvarro, the hotel owner says “ I don’t like cockfights.”
“I know, neither do we. It’s just sort of an anthropological excursion.”
“ I preefair dee bool fight.”
“Oh.”
We ask the proprietors of the burger joint whose voices suddenly get much louder.
“Coke fight? Ju wan to go to dee coke fight?”
“Si!”
They raise an eyebrow and then: “That way.”

Maclen is getting a little nervous about the whole this-is –an-insane-and-potentially-dangerous-idea- thing. I point out to him that at no point has anyone said “Please Senora, do not go to the cockfight, it is too dangerous for your lily white ass.” Which I take as a good sign.
Alvaro has an idea where we should go and he drives us to the Pelea de Gallo when our cab never arrives – this happens frequently in Sayulita.
“I ask dem why they don come and they say the drivers, he is at they houses.” Apparently this is a compelling reason for not picking up a fare.
When we arrive, Alvarro goes and talks to the “proprietors” in Spanish. They explain that the “qualified cocks” haven’t arrived yet. I can relate. The fights will start “maybe one thirty.” An hour and a half late – what kind of cockfight are they running here!
Alvaro drops us back in town and we find a taxi later that day and show him how to get to the ring. We tell him to return for us in half an hour – plenty of time to indulge in the whole cockfight experience. We pay our money and get seats ringside. This is not recommended for those of you planning on running out to a cockfight after reading this blog. I could live the rest of my life quite content to NEVER have the dusty feathers of a nearly dead rooster fly into my face. A crusty older lady comes by and demands vente pesos. I explain that we paid already and she says louder VENTE PESOS. So I pay her. Courtside seats, I suppose. She returns with two beers and I explain that we don’t want beers and that Maclen is a “ninjo.” She says something quickly in spanish and huffs off with the beers. Apparently, according to Mac, she said “Fine, if he’s going to be a little girl about it.” Or something to that effect. We don't get the vente pesos back.
The weighing in of the roosters is a complicated process, which seems to involve a lot of discussion and standing around. One of the cocks is very aggressive and attacks when put on the scale. Who says chickens are dumb? They put a sack over his head to protect the officials and Maclen says “Oh my god, it’s a rooster Abu Graib!” Meanwhile, bets are being collected and it’s unclear how you know which cock you’re betting on. The inside of the ring has advertisements for local strip clubs and other ads with scantily clad women in extremely degrading poses. It’s a very macho scene and I know I’m officially old and crippled because no one is giving me the eye. Quite frankly it’s insulting.
Finally the fight begins. The cock to the right attacks. The cock on the left is on his back, feet straight up in the air. Feathers fly…into my face. I sputter. The man on the left looks at his rooster and puts him back on his feet for round two.
“You can do it Rock!”
“I can’t Mick, you gotta cut me.”
Okay they didn’t actually say this.
I know Amy Sedaris and Bob Barker are hating me at this point, but PETA aside, this is rather fascinating. I don’t eat chicken or turkey – I’m kind to animals - but this is really interesting, I’m sorry, okay?
Round two lasts about 5 seconds. Cock on the left continues to be cock on the right’s bitch. Cock on the left lies there feet in the air. His “manager” opens his beak and administers the breath of life.
Oh yes he does!!! I never thought I would live to see a man blow life into his cock to get it upright again.
Sorry, had to go there.
It’s the final round. Cock on the right doesn’t really give a shit anymore. This is insulting. He is meant for nobler fights than this. I think I speak for the superior rooster when I say I suspect cock on the left was taking a dive. Cock on the left just lies there. He seems to be saying “Hey guys, I ‘m like dead now so let’s just call it a day, okay?” He’s not dead but I wouldn’t be buying any roadside chickens tonight.
“Ain’t gonna be no rematch.”
“Don’t want one.”
“ADRIENNE!”
The fight is over rather anti-climatically. No one even holds up a victory claw. Our cab driver reappears and informs us that he is more than happy to wait an hour or so and watch with us, no charge. It takes a bit of convincing to let him know that we’re done and ready to go home after one fight.
We return to town and to our hotel to our guardian angel, Alvarro.
“Did ju see dee cokefight?”
“Yes, we certainly did.”
“You don like?”
“no, we don’t like it much.
“I don like either. I preefair dee bools.”
Yes, you mentioned…..
I can’t explain this to Alvarro but truth be told, I went to the fights for one reason and one reason only. In case Maclen ever decides to be a writer I thought the perfect first line to a short story would be “The year my Mom got diagnosed with ALS, we went to a cockfight in Mexico.”

EL NINJO TARANTULA!

My friend Lisa should be a travel agent. Her Maui was unlike the Maui I had previously experienced – all tree houses and yerts and bamboo rainforests – and her Mexico is definitely off the beaten track. At her recommendation we went to Sayulita where the waves are ideal for boogie boarding….if you read the last blog entry you know how that story ends….

Sayulita is an ideal town for someone who can’t drive since the town is tiny and everything is compressed into a 20 minute walk from everything else. It’s not so ideal for someone who has trouble walking however since the road surfaces resemble the moon with some craters so deep that a small car wouldn’t make it over them. Amazingly enough I didn’t step in any poo while I was there which is shocking since wild dogs roam the streets (and restaurants!) and men trot by on horses all day.

Everything takes 5 minutes in Sayulita – though Sayulita minutes are much much longer than US minutes apparently. Everything is 5 minutes away, every meal will take 5 minutes, it will be 5 minutes before your table is ready. A half an hour later you’re seated.

All the directions are exactly the same. Everything is that way. It doesn’t matter how many turns you need to take or how many blocks you need to go. It actually makes sense since there are NO road signs (and that includes stop signs).

The people are unbelievably nice and the language barrier is somewhat bridged by good intentions. The food is wonderful, the atmosphere of the restaurants is perfect, the views are to die for (no pun intended).

We went on a boat with Solin who took us within 30 feet of a mother whale and her baby. It was incredible. The exact opposite of the Demitri Martin line: “I went on a whale watching trip once. It was just like watching a bunch of people on a boat looking disappointed.” At one point Solin said to us “look the mother is pushing the baby” and I cried it was just too poignant.

We also swam with dolphins. Another tear jerker. They are amazing creatures. My dear friend Leslie told me I should talk to them and ask them to heal me because they have healing powers. I did ask them….in dolphin….to help me out but when I said I had ALS they just said back to me ……in dolphin…..”ALS? Bummer. Good luck with that.” I didn’t realize until we were “swimming” with dolphins that I no longer swim. I can just feebly kick one leg and flail my arms about – I’m not even special Olympics caliber anymore. Mac pulled me when I couldn’t make it and the dolphins pushed me at warp speed, which was awesome. We also went on one of those giant water slides, which was another thing I probably shouldn’t do. Don’t get me wrong, I can be hurled around in an inner tube at dizzying speeds with no way to control myself as well as the next guy – it’s the disembark that isn’t actually possible. An awkward ballet ensued where Maclen had to endure what he generally calls a “Running with Scissors moment” extracting me from my inner tube. Comical and very inconvenient.

Perhaps my favorite thing about the trip was the fact that we accidentally arrived in the middle of “Sayulita Days” a fair, which attracts 10,000 extra people to the town. From our anecdotal experience attending the fair virtually ALL of those 10,000 people are Mexican. My favorite attractions were – in reverse order – the game where you knock over the pyramid of bottles…. only the bottles in this case were recycled from the drinking customers so they would shatter on contact with the ball, shards of glass flying everywhere; the dart/balloon game which boasted the grand prize of a lamentable painting of Jesus Christ bleeding from his crown of thorns, looking plaintively up to the heavens saying (in Spanish) “Forgive them”; and the piece de resistance: EL NINJO TARANTULA – a young boy whose head poked up from a disguised refrigerator box. He had furry legs attached to the side of his head and a furry tarantula body connected to the back of his head and a look on his face that clearly read “ I hate my life …and my Abuelo.” Abuelo colleted the money while a recorded voice touted the amazing wonders of the world’s only spider boy. It cost 2 pesos and was worth much much more. We savored being ever so briefly trapped in a Steve Buscemi movie. It was rich.

Speaking of loud speakers, they start at 6:30 imploring people to buy cilantro, petrol, bottled water you name it. It’s easy to see why a siesta is necessary since the battle of the bands went on until 3AM. I saw more tubas on this trip than I have seen in my entire life….and I went to a music conservatory! Every corner boasted a band and they went on and on all night long.

Mac and I are well-matched travelers. I’m sure he experienced more anxiety than he let on but he was game for going on all kinds of adventures with a non-spanish-speaking-cane-carrying-falling-down-mom who would inadvertently leave people by saying “ENOUGH!” instead of “later!” and who had no qualms about walking up to men with all gold teeth and asking how to find the cock fights.

I’m gonna make you wait for it. Tune in for further adventures of Crippled Gringa and her trusty sidekick Underage Boy as they travel through the seamy underworld of Los Gallos!