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!

On Boogie Boards

For those of you who are faithful readers of this blog you know that almost from day one of my ALS diagnosis I have planned to go boogie boarding. The idea was that of all the things I want to do this one was going to slip out of my grasp sooner than all the others – hence the haste. So while I have many many great Mexico tales to tell, they must wait for future blogs since the question about boogie boarding hangs in the air and must be answered.

First some background. The first time I went boogie boarding was during the last century in Waikiki. I found myself compelled to paddle out to the giant surfer’s waves despite being a mediocre swimmer at best. They were huge, formidable in fact. Not Maverick level but daunting still. I caught the first wave and hung on for dear life as the water propelled me into near flight and threw me rather unceremoniously to the shore. I was hooked.

Now I hate the cold, so most of my water sports are reserved for unseasonably warm days or tropical vacations so there were large spells between each of my boogie board adventures. Still it remained one of my favorite things to do. I tried surfing but even the triumph of standing ( barely) on the board has nothing on the weightlessness and utter surrender of boogie boarding.

So let me set the scene: My board is outfitted with Velcro (thanks Christopher, Wendy and Ali!) and I wear a Velcro glove to hold my bad hand to the board. The weather is stunning, the waves high. It really does look like a movie set – South Pacific with Bloody Mary singing Bali H’ai or the opening credits of Hawaii 5-O. Each day subsequent to boogie board day, the water seems more and more stunning, more vividly turquoise. Was it that beautiful? Did I just not see?

Maclen helps me down the stairs to the beach and I use my cane to get down the slope of sand to the water’s edge. Downhill is tough for me. Now comes the tricky part. We’ve gone from movie musical with Mitzi Gaynor to “plucky underdog film.” Think Bad News Bears but in swimsuits. I need to stand (now without the cane) in the water to get out deep enough to paddle out. Mac is holding me steady but I keep falling over onto him. Or onto my astonishingly white ass. Once I’m deep enough, I don’t have the arm strength to get my arms on either side of the board and Velcro the hand because the waves are still crashing me this way and that. I end up under the board, to the side of the board, on my knees with the fucking board still velcroed to me – everywhere but belly on the board pointed in the right direction. The Velcro works very well but I realize we never figured out a solution for the legs. Duh! Mac is doing his best but it is very new to him to have his mom hurled at him at gale force.

After one particularly undignified attempt a woman comes up and tells me I’m doing this wrong and do I want some tips. I explain that I know what to do, I just can’t. She presses me and I have no choice but to tell her the whole truth to which she replies without skipping a beat “I’m so proud of you.” I admire and envy her. I think I would have been able to express admiration in that situation but not pride – it requires one to be married to the whole human struggle – to take pride in all of us – the whole mess.

Anyway she leaves us alone to tilt at our windmills and I try some more, joking with Mac ( for him or for me? I’m not sure) by doing my best Ben Stiller imitation “they must have ripped the Qs out of my dictionary cuz I don’t know the meaning of the word quit!” But at a certain point a realization washes over Mac and me like a wave: it’s already too late. It’s not going to happen. We have planned for months and flown to a small town in Mexico known for it’s waves so I can boogie board before I end up in a wheelchair and it’s not going to happen.

Here’s where the movie goes from Hollywood blockbuster to Canadian independent film. Without a word passing between us, Mac and I start to laugh. We laugh and laugh until our bellies ache and time stands still and it’s just the two of us, doing what we do best together and damn it, I’m happy. I really am. I’m happy because I’m laughing in warm water in the sun with my beautiful boy. When we come up for air I say “did I say boogie boarding? I meant cockfighting!” And that was that.

We staged a photo (Mission Accomplished?) for all of our loved ones who helped make the trip possible with me riding the surfer’s sloppy second wave at shoreline and then we went about our day. There were no tears – what would be the point? No 11th hour intervention in the form of a taught-bodied stud coming to my rescue– it’s not that kind of movie after all. Just another lesson – we are only guaranteed this one moment and nothing more.

As we are drifting off to sleep that night, Mac says to me: “I wouldn’t be surprised if I come back here on my own some day during Sayulita days.” I hope he does.

And yes – we did go to the cockfights. I’ll leave you in suspense about that little adventure.

Well, ain't that a kick in the pants.

I guess I’m no different from most people. I clutch onto tiny threads of encouragement, like a car salesman or a stalker or a Huckabee supporter might. I try not to admit that to myself because it hurts so much when you find out no one will buy the tru-coat or that Jodi Foster still doesn’t love you or that even John McCain seems more sane than your candidate or ...that you don’t have Lyme disease.

Yes, you guessed it. The results are in and I still have ALS. Bloody hell.

In 1991, I took 4 pregnancy tests before I believed I was pregnant. The Russian proprietor of the pharmacy did everything but hiss “whore!” every time I came in for yet another EPT package. She must have thought I was having a ball every night. I’m stubborn, I guess. I was sure there had been some error that made the stick keep getting pink. this time I knew the results of all the blood work (Lyme, Mercury poisoning, metal toxins, and AIDS – yes I was hoping for AIDS oddly enough) would be negative or I would have gotten a call…..Still I hoped.

On the positive side, I will start lithium in a couple of weeks so I will have a great shot at slowing this fucker down. I still have so much I want to do.

I may not be writing a blog for a few days as I’m off to Mexico for some boogie boarding and fun or as I put it on my message machine “ I’ve gone to a better place.” Nothing like some sun to return one to a sunnier disposition.

Barak Obama, Auntie Carla!

Some Random Thoughts

1) Favorite joke: Researchers are observing two children – an optimist and a pessimist. The pessimist is in a small room packed to the brim with the best toys money can buy but she sits in the middle of her riches crying because she can’t decide which one to play with. The optimist is in a room filled with horse shit and is gleefully flinging it around and about the room. The researchers ask the child why she’s throwing the shit around and she replies: “There’s got to be a pony in here somewhere!”
2) I called it. River is an exceptional album and I didn't need no Grammy award to know that. Hooray for Herbie Hancock.
3) Go see Walkin’ Talkin Bill Hawkins at the African American Cultural Center in SF. It’s a beautiful and moving show. For more info go to www.walkintalkin.com
4) Where the fuck is my pony?
5) My 3 year old niece supports Barak Obama.
6) This is not a useful demographic for him.
7) A lot (not all!) of my friends who are in relationships express discontent about said relationship (not your husband/wife gentle reader – just my other friends’) and a lot….okay almost all of my single friends express discontent about being single. So who’s happy? Rumi says: Longing is the core of mystery. Longing itself brings the cure. The only rule is, Suffer the pain.
8) Ummmm, Pony?
9) Twice this weekend I had people come out to support me – once for a gig I was singing on and once for a fundraiser organized by Allen Taylor and orchestrated by Kaila Flexer. It’s hard to know what to do with so much kindness. I’m ridiculously blessed to know so many fantastic people.
10) I hope I have more steam on future gigs. It’s hard to keep up the energy. Impossible to know if it’s cold related or ALS related, permanent or passing. I live inside a giant question mark.
11) You are my pony. You all know who you are.

A plug and a poem

First the plug:
This Friday I'm singing at Anna's Jazz Island at 2120 Allston way in Berkeley at 8pm. Please come! No pity party allowed, just some great musicians backing me while I sing some great songs. Should be lots of fun.

Now the poem, a beauty by Barbara Crooker

"All That Is Glorious Around Us" by Barbara Crooker

It is not, for me, these grand vistas, sublime peaks, mist-filled
overlooks, towering clouds, but doing errands on a day
of driving rain, staying dry inside the silver skin of the car,
160,000 miles, still running just fine. Or later,
sitting in a café warmed by the steam
from white chicken chili, two cups of dark coffee,
watching the red and gold leaves race down the street,
confetti from autumn's bright parade. And I think
of how my mother struggles to breathe, how few good days
she has now, how we never think about the glories
of breath, oxygen cascading down our throats to the lungs,
simple as the journey of water over a rock. It is the nature
of stone / to be satisfied / writes Mary Oliver, It is the nature
of water / to want to be somewhere else, rushing down
a rocky tor or high escarpment, the panoramic landscape
boundless behind it. But everything glorious is around
us already: black and blue graffiti shining in the rain's
bright glaze, the small rainbows of oil on the pavement,
where the last car to park has left its mark on the glistening
street, this radiant world.

HOPE

There is a new clinical trial based on a double-blind study in Italy. Apparently lithium might significantly slow down the progression of ALS. In Italy, 16 test subjects took lithium and 22 controls took a placebo ( some of them along with their Rilutek – a drug I am taking now). 4 of the lithium patients were bulbar onset ( meaning the disease first presented in speech, swallowing or breathing which means shorter life expectancy) and 7 of the 22 controls were bulbar. All of the lithium-taking participants survived and stayed relatively stable over a period of 15 months, while there was definite decline in health in the control group, and 30% died (it’s not indicated how many of those who died were bulbar onset – that might be really important to know.)

Lithium was able to cause an increase in what are called Renshaw cells in the spinal cord thought to be involved in the disease process of ALS. Lithium also helps motor neurons get rid of “structures” within the neuron that cause damage and promotes a number of other processes that keeps motor neurons from dying.

The only drawback to the study is the small number of participants. That’s where I hope to come in. Clinical trials will begin all over the US in the next month or so and I’m an ideal candidate – limb onset as opposed to bulbar, young, in good shape before I got sick, etc etc.

The doctor I spoke to yesterday said they’re hoping to extend people’s lives long enough for stem cell research to provide a real cure My interpretation? This is not going to save your life, just lengthen it and keep you walking and independent longer. Fair enough. I'm in.

A little hope is enough. Meanwhile, outside the world has bigger fish to fry than my little drama. We are down to four in the presidential campaign - all minorities of a sort. Who would have thought it would come down to a choice between a woman, a black man and two mentally-challenged people. The world is changing faster than we can keep up. As Obama would say "Yes we can."

I am turning into a walking cliche but hey, at least I'm walking.

Yesterday I dreamt that I could no longer move my arms or legs but instead I had grown wings like a fairy’s or a butterfly’s. They were mighty and strong and I controlled them from my back muscles. I flew up above everything and felt the air on my face and chest and it was transcendent.

Not once did I worry about what to do about my arms and legs once I landed. I was just riding on a current of wind, looking down, amazed at all the beauty.

If you believe in Fairies, clap your hands.

Kathy, Edith and Mac are heroes. They sat through four hours at the ALS clinic with me (plus blood tests and 2 hours of driving ). A full day! My dear friends took meticulous notes, wrote down everyone’s names while Mac and I endeavored to supply the much-needed jokes.

Upshot: Dr. Miller, who has seen over 1000 ALS patients believes “in his heart of hearts” that the other neurologists are correct and I do have ALS. He is still running me through a battery of tests – lyme etc – which I’ve had twice before but these tests are apparently more involved. I’ll get those results back in 3 weeks or less and still hold out some hope.

The meeting was overall very positive – I’m the ideal patient – young ( no really!), positive ( no really!) huge support network, limb onset rather than symptoms affecting breathing, speaking and swallowing and also early diagnosis which means earlier ingestion of the Rilutek which could buy me as much as 20 months. And my lung capacity is at 108% of normal people! Big ups to singing and yoga!

I will be assessed for orthotics to help me walk and it’s recommended that I start using a walking stick ( I want one like Gandalf but it’d be a hassle to schlep around). I’m also being assessed to see if I can drive again with hand controls instead of foot pedals. This poses a difficult ( for me) question about my Miata: do I spend a ton of money to convert a car that I may have to chuck shortly if the disease progresses rapidly and I am in a wheelchair sooner rather than later? Is it worth the money or do I get a practical car now and adapt it.

Now before I get started on practical cars (cough cough), let me just say that with rare exceptions, the minivan drivers I have met are awesome, inspiring women who are generous and nurturing to a fault – like Wendy Darling from Peter Pan was with the Lost Boys. Taking care of everyone and cheerfully departing from Never-never Land to face the real world. I want to be as thoughtful and wise as them if I grow up.

But I am not Wendy Darling. I am Tinkerbell – a fiercely loyal, sometimes misbehaving brat who needs a small car and room to fly. I like Never-never land because we drive sporty convertibles there and not minivans. Hell, my last apartment was the size of a minivan!

Isn’t it funny how the little things – the car you drive, the shoes you wear – eclipse the gigantic things – like when it’s time to leave the real world for Never-never Land or destinations unknown. I guess it’s because we don’t get to pick when we get there or how we get there, but damn it, if I’m walking there I want it to be in cute shoes and if I’m driving there I want it to be in a sexy convertible.

One thing I do know is that I know how to find Never-never Land. Second star to the right, and straight on until morning. ...

Dirty Little Secret

So today is the long ass appointment at the ALS clinic and I'm back to that creeping hope of misdiagnosis. I grew up thinking that asking for what you want was a character flaw - something shameful - but I've worked hard to move beyond that and a big step is to proclaim loudly in a public forum: I want to be one of the 15% misdiagnosed. I want this all to be a wild and crazy dream and if it is, I promise to remember everything I've learned.

Brian's Song

I missed my Monday yoga class so I went on Thursday instead and I had the privilege of partnering – perhaps by sheer coincidence or perhaps by the divine intervention of our divine yoga teacher, Barbara –with a woman whose husband is dying in hospice after a 4 year battle with ALS. I have seen this woman, Mary, in class so many times and never had a clue she was contending with something so huge. She was just a pleasant looking woman my age. Everyone carries with them this backpack of stories. Each of us has a story that will break hearts, a story that will delight, a story that will not allow people to look at you the same way ever again. I wish I had taken the time to hear people’s stories before I came to conclusions about them. I think I was just arrogant enough to believe that the stories I made up in my head for them were more interesting than the real ones. That’s my new resolution. Hear more stories.

I personally don’t believe that prayer can save a life or cure a disease but I DO think prayer can heal and healing is a very different journey than curing. It is in that spirit that I urge you - if you’re the praying type - to include Mary and her husband Brian in your prayers. I am sending my intention to Brian that he feel wrapped in the arms of peace, light and love in these final days.

Whatever You Love, You Are

Tonight I saw Ann Randolph do her wonderful solo show Squeezebox at the Marsh as part of the “Marsh Rising” series. She was vintage Ann: bawdy, brave, vulnerable, smart, wickedly funny and insightful. It felt so good to be watching someone I like and admire pour their heart into their work. A little sad I must admit since it was not that long ago that I was doing a “Marsh Rising” myself and had hopes of a run. I had fallen just before the show ( no doubt from the ALS) and was performing severely injured. It was the last full evening of the show. My swan song.

I will keep working, keep creating and I will always know that I had a great show that should have had a longer life and that will be enough for me, just to know it for myself. (Who am I kidding? It's not enough.)

In the meantime, Mac had a terrifying experience at his school yesterday – a man with a gun on campus – the whole school in “lockdown” – lights out, doors locked and students huddled in the corner. He told me he was probably more concerned because the other kids haven’t realized yet that “bad things don’t just happen to other people.” Amazing how the theme of the fragility of life keeps getting hammered into my head. I get it, okay, I get it. We sat on the sofa that night, he and I, two war vets, silently commiserating as we watched a video.

So I was reading this Rumi poem and it ended with the line you see on the fancy greeting cards “Whatever you love, you are.” I've read it before but this time for some reason it hit me with this enormous force – a sawed off shotgun blast to the chest, ripping a round gaping hole right into the center of my heart. I started to weep. But then golden light started to enter the hole and with it incredible joy, which didn’t push the pain out, but just spread itself around and through the pain and I looked at Rumi’s words again. Whatever you love you are.

I am a solo play. I am a song. I am laughter. I am a practical joke. I am all of you. I am Maclen.

I am a poem.

all you need is love

Okay, so if this is over the top, let me just say that I get to do that now.

Attention loved ones: I know you are tuning into this blog and I want you to pay close attention to these instructions. They are inspired by waking up this morning and reading Alison’s blog and also from reading a note my Dad wrote to her about a previous blog which she kindly forwarded to me. It all got me to thinking about how my Dad has been reminding me lately of the guy he was when he was my age. I was Mac’s age then and we shared an apartment. It was an amazing shift in our relationship as his heart was cracked wide open – probably from his marriage ending – and we would talk about anything and everything. I felt like I knew him to his core then and I feel like I’m getting that guy back lately. Bittersweet.

I’ve had that experience a lot lately with different people. I get to see them in a deep, rich and intense way that I hadn’t before and it’s like they reveal the beautiful child/soul in them. Ali writes so eloquently about the heart-opening that she is experiencing. (reminder – she’s linked to my blog).

But I digress. Here are your “instructions”:

Those of you who love me have made it clear to me that we are in this thing together. If that is the case I ask this favor of you (those reading in Canada, I ask this favour of you) - don’t let the sad part of this take over your relationship with me. We can be sad together for sure, but let the hurt and pain of this crack your heart wide open like a walnut and let in all the love that you can – love from me, from your children, your partners, your friends. Accept it even if it is scary to be loved so much and to love so much. Don’t waste your time with reading the whole self-help book but read the jacket blurbs closely and take all the titles to heart. Be grateful all the time. Carry your favorite poem in your wallet. If you don’t have one get one. Be kind to yourself. Acknowledge wonderful experiences quietly to yourself or in your “out loud” voice – sand between your toes, a baby’s rolls of fat, a yummy muffin eaten in the morning sun - and mentally bookmark those experiences for when you need them.

This would be a big favor (favour) to me. I need to spin this ALS thing positively. I read about the health challenges in store for me and I don’t want them. They scare me shitless. I want to run away but I can’t. All I can do is put one foot in front of the other, open my arms and move forward into this experience even though my stomach tightens from the fear of it. There has to be some meaning to all of this and knowing the people I cherish in my life can lead a richer, more beautiful life – a happy and fulfilled life – will give me that meaning and so that courage to take this walk towards the unknown.

A sax player I barely know sent this response to my Rumi blog which seems appropriate to pass on. I think it’s the next part of the poem I quoted but I could be wrong.

AND SO IT IS THAT IN THE MOMENT YOU PLEDGE YOUR HIGHEST LOVE, YOU GREET YOUR GREATEST FEAR. WHEN THE HEART WEEPS FOR WHAT IT HAS LOST, THE SPIRIT LAUGHS FOR WHAT IT HAS FOUND. YOU ARE A NOTHING SURROUNDED BY GOD, AND FILLED WITH GOD, IF YOU SO DESIRE.

My Magnum Opus

I was talking to my friend Alison about the Woody Allen film CRIMES AND MISDEMEANORS yesterday– one of my favorite films. In particular we talked about the final image of the recently blinded rabbi, played by Sam Waterston dancing with his daughter at her wedding. The essence of bittersweet – the overarching pain that he can’t behold her in her wedding dress - the delight to be there with her for this important moment - our sense as audience members that life isn’t fair – the good are punished and the wicked lead the life of Reilly. And yet. And yet. There is dancing and life goes on.

Later in the evening I received an email attachment from a friend who has been sending me Ray Charles tunes. I call them my “Ray of the Day” and they are indeed a ray of light. They all tell a different story and seem to fit the mood I’m in when I get them.

Alison and I talked about how artists give us these moments – the rabbi at the wedding, Ray Charles singing Blues in the Night at an impossibly slow tempo, the lines of some of the poems I’ve quoted on this blog – and for a brief moment those works of art lasso that vast, unknowable grief and joy that is life and pull it into this one crystalline moment. We watch a film and we weep, we listen to a beautiful violin piece and the hairs on our arm stand on end, we feast on a writer’s words and in doing so that vastness of this world, this life – as well as it’s insignificance and brevity is right there if just for a moment.

A new friend told me that he never really understood the concept of “bittersweet” until my concert and it made me think. I had hoped someday to make the kind of art that could reveal something so painful and beautiful at the same time that the audience and I could share a knowing, that crystalline moment. Now I feel like I’m living inside one of those moments and how I choose to accept this bittersweet truth will be my art.

big day with rumi

I have this book of Rumi poems called "A Year With Rumi" and just for fun today I decided to look up December 26th which is the day I was diagnosed with ALS. Here is the poem for that day:

Your True Life

As you start to walk out on the way,
the way appears.

As you cease to be,
true life begins.

As you grow smaller,
this world cannot contain you.

You will be shown a being
that has no you in it.

On Orange Carpets and Little Deaths

My friend Lisa arranged for someone to come by yesterday and help with my living will. I don’t know if the woman – I’ll call her P – would want her name mentioned or not so I’ll just stick with P. She is a remarkably intuitive person with a wealth of information and experience. As a healthcare professional herself she was also able to talk about things like when to get an attendant, a new wheelchair-friendly apartment, etc. One amazing moment occurred when she pointed to my wonderful orange shag rug and said ‘sooner rather than later you’re going to have to get rid of this and it will be harder to do that than it will be to die. That’s the richness in all of this.”

I understood her completely. An illness like this is a series of “little deaths” as she called them. I have experienced very minor ones like decrease in energy because of my medication or divesting myself of sexy shoes but the deaths will get bigger, deeper, harder ( did that just sound like a caption for a porn sequel?) and I’m going to have to be ready.

Sometimes I walk down the street and I say out loud “It’s a beautiful day and I’m walking.” It’s hard to imagine from this vantage point saying “it’s a beautiful day and my wheelchair is faster than that stroller – in your face, stroller!” but maybe I will.

In the meantime, I try to balance the little deaths with births and resurrections – old friends I lost touch with blessing me with their presence, working on getting clearance to drive my beloved Miata again, and awaiting the visit of Annabel, Atticus, Allison and my dear baby brother Jason.

snowing in baghdad

It snowed today in Baghdad. It was not an impressive snow – it melted as it hit the ground but in my imagination it covered the war-torn city in a blanket of white making it, for a short time, clean and reflecting the sun’s light and illuminating the evening with something other than mortar fire. Do you remember snowy nights? (if you’re not from California). It would be so white and quiet which is probably where the idea for Silent Night came from. The only sound you would hear would be your own boots crunch-crunching through the snow. And the light. I would walk along the middle of the road in Vancouver at some late hour and feel illuminated and alive beyond description. I want this for Baghdad.
Until today they'd seen snow only in movies unless they had traveled. "I rushed quickly to the balcony to see a very beautiful scene," said a 19 year old college student, "I tried to film it with my cell phone camera. This scene has really brought me joy. I called my other friends and the morning turned to be a very happy one in my life."
Doesn’t that make you want to cry? We can find joy in the darkest times.
An Iraqi who works for The Associated Press said he woke his wife and children shortly after 7 a.m. to "have a look at this strange thing." He then called his brother and sister and found them awake, also watching the "cotton-like snow drops covering the trees."
I want Baghdad to gaze out at the cotton drops and stick their tongues out to catch them and then look across the sea and marvel that a black man with the middle name Hussein is a likely candidate for president of the country that has caused them such cruelty.
I want them to make snow angels over the spots where their loved ones fell.

Fuck ALS

People have told me lately that I’m brave and I feel like such a fraud. I don’t feel brave at all. I feel like me – only on some sort of spiritual isometric machine. I have wondered how honest to get on this blog. I hear friends talk disparagingly about the solipsism of tell-all blogs but I think it might be good to be truthful –even if some of what I say is painful to my dear ones. I mean there are manuals on how to live with ALS but how do people find out how to die from it if we aren’t all really honest?

Truth is I’m scared and I don’t want this. I get through the days, sometimes I have an awesome day. I laugh and try to engage with the world. But I really feel like I was born to perform for people, to make them laugh and cry, to charm the pants off of them (sometimes literally) to be forever “young for my age” to be the most fun grandmother ever, to travel and have adventures and tell stories, oh stories – I don’t have enough yet and I don’t have all the ones I’ve lived recorded and I don’t even know how to start. I have an “abstract/random” data base in my brain that pulls these things up as they are needed. I don’t know if I’ll have enough time to remember all the stories I don’t want to die with me.

I’m scared. So maybe that does make me brave since I have to acknowledge every day that the world continues to spin even though I am dealing with the only thing I said I couldn’t handle. Sometimes the pain of this literally takes my breath away and it’s hard not to fall right to the floor with it.

Okay here’s a weird confession. Almost as bad as dying, I fear losing my body. I’m vain you see. I can take getting older, getting gray eventually, I already have wrinkles – but I can’t bear the idea of being marginalized by waiters, passers by etc. Being seen only as someone in a chair. I still love yoga but I mourn the poses that are no longer available and wish to hell I’d appreciated them then as much as I do now. In the last few years I have reveled in my beautiful middle-aged self. I have felt vibrant, alive, sexy and full of purpose. I don’t want to let go of all of that.

That’s where the isometrics come in – I feel brave and scared, accepting and devastated, surrounded by love and early in the morning – all alone. It’s so much to hold, so much to wrap my mind around, so hard to find a way to describe it so people will get it.

I’ve thought maybe I should leave only inspirational stuff behind for Mac, but he’s never been one for bullshit and I think I want him to know that I am a complex human being in on an un-navigated course. I want him to know that life is indeed really hard and unfair and that all we can do is love what we got while we got it.

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

I’m sorry if it is tough to read this. I just don’t want to turn away from this experience. I want to live it because it’s what I got.

Are we getting tired of reading about ALS yet?

My friend Leslie told me to write down my dreams. I’d been keeping track of them to share with my brother who is the dream expert but I got derailed. I think it was one dream in particular which kind of told me what was in store. In the dream, my cell phone goes off and I answer it and it’s a crank call and for some reason I know that the call if from god and I say to him “look, I know it’s you. Cut it out.” It’s one of those corny gag crank calls. ( I know, no one crank calls anymore – too old school. ) Well, this is one hellofa crank call, ain’t it?

By the way, I caught the typos in the last few blogs but I ain't fixin' them.

Ali sent me a site – 100 things to do before you die. People make lists and blog about their experiences. They aren’t dying, they’re just trying to make their awareness of that inevitability catapult them into DOING. Thinking of things they want and making them happen.

What I want to do before I die is see Maclen graduate from college, get married, have kids, find a career he likes, etc. Probably not happening. What I can do though is make sure that before I die, Maclen has all the kinds of stories written down that parents tell their kids and their grandkids about when the kids were little. That way when he is sad that his kids don’t have a grandma, he can read them the stories…or just read them to himself. I’m trying to assemble my thoughts so I can write to him but whenever I start…well it’s just too hard. I thought I would start by listing things I want to tell him, even if he already knows. I can expand them to stories later.

1) he didn’t really kick much. He did tai chi in utero. He liked to lay down sideways so my belly would look extra wide. Sometimes I would see his foot.
2) He wasn’t planned (oh shit, the stick is pink) but his dad and I knew we had to have him because he would be exceptional.
3) His apgar score was a remarkable 10 which is shocking considering I didn’t know I was pregnant for most of the first trimester. I would drink HUGE espressos and night times were for beer.
4) I knew him when I first laid eyes on him. He was like an old friend.
5) He had jaundice in the first few days.
6) The first night in the hospital he cried nonstop and his eyes were so wide and filled with tears and he seemed to be looking right at me imploring me to help him.
7) He had colic and would scream non-stop late afternoon to early evening every night for months. The rest of the day and night he was a complete doll.
8) He spoke at 6 months. He said “hi doggy” By one year he was singing songs and talking in complete sentences. At two he could recognize the word “open” on any store that had the sign and could spell the word “cartoon” backwards and by heart.
9) At two he stopped calling me “Mommy” and started calling me “Carla”I tried to convince him that he was the only person in the world who was in the position to call me mommy and he said (I think rather patronizingly) “ I know you’re my mommy, Carla”
10) He weaned himself at 14 months. He walked then too.
11) He once pulled up the top of another mom and tried to nurse with her.
12) He went to bed with music every night.
13) He had an imaginary friend named Rainer who would do all the bad things in our house like scribble blue crayon all over the wall.
14) He liked poems from an early age and wrote his first poem at 5. The first two lines went “trying to measure last days on earth. In inches, in miles, in Stevie Wonder.”

How will I measure last days on earth? Stevie Wonder is as good a place to start as any. I meant to write a blog about things I want to do before I die, but it all pales in comparison to hanging out with this extraordinary kid.

friends

Last night a group of my friends from different parts of my life met together as part of Driving Miss Craisy. I wasn't there but it sounded like an amazing event. I have a startlingly powerful group of friends with talents wide ranging and diverse and within a three hour span they had come up with all kinds of ideas of how to make this diagnosis a little easier on me and on those I love. Among the things that came out of the night was a website. If I am no longer able to type this blog or if I want to focus on the feeling zone rather than the practical day-to-day news then people can tune into www.quiltmamas.com/dmc
Yes, it's already up. That's how amazing these women are. ANother place to go is Alison's blog which is linked to this one.

The morning started with Gary coming over to help me break the news to Alicia my housecleaner who speaks very little English. It was a wrenching event which he handled with such compassion. Lynda and Gary have been in my life since our boys were two and it was brought home to me today how very dear they are to me. They have two wonderfully smart, funny and quirky kids, the older of the two I love like he was my own son. Wendy and Barry came by and did all kinds of handy work for me from fixing futon frames to hemming pants ( no more high heels for me, sadly) and Lisa led me thru some yoga with a gentle and loving hand.

THere is so much more to say but truthfully I'm too tired to say it. Maybe it's the drugs or maybe it's just the whirlwind of the last week-and-a-bit but I am bone tired. I will keep you all posted.

THINK, think about it

FInally - someone who cares about the important issues:

Jenny

Flight of the Conchords provide us with the smile of the day:

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

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

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

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

Vote for a candidate that believes in national health care.

Normal

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

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

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

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

Mary Oliver says:

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

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

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

She goes on to say:

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

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

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

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

Yes, yes, yes Mary Oliver.

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

Stages of Grief are All A-jumble

Day Two:

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

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

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

This excerpt from Naomi Shihab Nye:

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

the long goodbye

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

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

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

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

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

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

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

Birthday BLog

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

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

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