Saturday, August 30, 2008

Variations on a Theme: The Sufis and a bit of Ovid thrown in for good measure


I wonder if Hafiz had regrets.
Or did he live like his poems until the very end?
Did he open his arms to the Dear One and passionately embrace his passing?
Or did his lips stiffen and pucker and his eyes fill while he tried to hold back a sob
Bargaining with the Beloved for






“Death’s not so bad”, Rumi told me
Though not exactly in those words
“And this world? Hell, after the first couple of centuries you hardly miss it.”
Easy enough for him –dead now for 735 years
Doesn’t the Beloved get boring after all that time?
I love the Dear One too
But I also want to see other people.


Rumi says “Die and be quiet
Quietness is the surest sign that you have died”
But there are symphonies inside me
Trombones and French horns
And electric guitars
And unruly, bellowing “I love yous” perch on my tongue waiting to fly
to someone whose heart is waiting

Last night my son allowed me to rub his neck and shoulders
My nearly useless hands dug into the hardened places and tried to offer some release
It was a moment to savor
But instead
I longed to grab him up in my arms
I longed to whisk him back to a time when my hands and words and kisses
could heal all his wounds.
I longed to hold his hand and walk forward confidently with him into a bright future
“Didn’t I tell you?” Rumi asked me, shaking his head in mock reprisal
“Longing is the core of mystery. Longing itself brings the cure. The only rule is, Suffer the pain..
Geez, Rumi , I get it. I get it, okay?
Now you see this is why I prefer hanging out with Hafiz.

“The path will follow you if you are true”
Pretty words, Hafiz, but I’m tired of blazing this trail
There are roots and branches and fallen trees in my way
And a temptation to turn around like Orpheus in reverse
When Orpheus returned, broken hearted from his journey to the underworld
I’ll bet the beauty of his music
Was almost too much to bear.
But I travel a different path
And though I sing as I walk along
My voice shakes

Friday, August 29, 2008

President Obama

A black family stood in front of 84,000 people in a stadium last night as the likely next first family. While he understood the historic nature of the event intellectually, my 16 year old, raised in the progressive Bay area and born shortly before Clinton was elected (first black president my ass) doesn’t necessarily understand why I was fighting back the tears for the 40 minutes this amazing man spoke.

He balanced it all – a bit of brilliant number-crunching policy wonk, a bit of stirring orator, a bit of gentlemanly consensus builder and a new trick –fire-breathing populist. He reminded me of the gentle dad who finally blows his lid and everyone stops what they’re doing when he hollered “Enough!” And of course he brought it home in the end with a little MLK action – the elongated vowels, the sing song pitch of the voice the forward propulsion of the speech – an almost necessary homage given it was the anniversary of that famous speech

Obama never acknowledged outright that he was black. I think it was a good move. It’s clear to look at him he’s black but more than that, more than most of us (especially me) he’s American. He’s black and white, a Christian who went briefly to a Muslim school (by the way, Microsoft Word automatically capitalizes Christian but not Muslim) he’s lived in Kansas, Hawaii, Chicago and abroad …this is a nation of people with vastly different experiences from vastly different cultures and who better to represent us than a man who as Whitman would say “contains multitudes.” I listened to him, hoped no crazy man would take a shot at him and felt a little hope start to chip away at my political cynicism.

Back in January my dear friend Lisa and I drove along 80 towards the Bay Bridge and she told me that in one of her bargaining moods she put it out to the universe as a trade: 4 more years of Republicans in exchange for me not having ALS. I know now more than ever I wouldn’t take that trade if it were offered.

It was a damn fine speech.

Wednesday, August 27, 2008

Jimmy "JJ" Walker Danced With Me

One of my bright stars from my teaching days has gone back to school on the East Coast. Another has headed off to rainy Seattle. Another is here on break briefly before returning to study acting at the school she calls “Harvard University in Cambridge, Mass” In case we hadn’t heard of it, I guess.

A pang of envy leavened with maternal pride. Oh to be someplace that has a real fall! To watch the leaves turn and to smell new beginnings in the air. Do you notice how different the air smells at different points of the day? During different seasons? Oh to be signing up for classes, seeing friends you haven’t seen all summer or meeting new ones, moving into new digs ( what an old fogey word!) to be moving into a new crib ( nope, trying too hard) to be squeezing your ratty futon frame through the door of the new apartment (wait – I STILL have a ratty futon frame. I’m so immature.) Oh to see the future as a piece of fruit – ripe with possibility – that you deftly pluck off a low hanging branch.

I love the Bay area but damn I miss fall. All the years of teaching make me think of it as the real new year, the real time for resolutions, recharging and rugelah. I am doing some “resolutin’ “ of my own – adding water walking to my routine (in, not on), trying to finish numerous dangling projects and enjoying time with friends and family. In the meantime I’ll somehow endure 2 more months of glorious hot sun giving way to more slightly cooler glorious sun.

Spoke with the social security office yesterday. Hilarious. Here’s some sample questions , more or less IN ORDER:

Do you own stocks, bonds, other investments?
Do you have a retirement fund?
Do you have a working stove and refrigerator?
Do you have any cash under your mattress?
Do you own a funeral plot or urn? (Carla: not yet)
How many hours a day did you walk, stand, kneel, crawl, stoop?
Did you have anyone working under you (Insert predictable Carla dirty joke here more for Kris’ benefit for having to sit through this than for the intake guy. My answer is immediately followed by:
Do you have mental problems? (Me: Is that a follow up or is that really the order of the questions? Him: that’s just the order. Me: No mental problems.)
Do you take any medications? (Me: lithium. So much for no mental problems sounding credible!)

Yesterday my shuffle was on and up came “Let’s Get it On” by Mr. Marvin Gaye. Now I guess I’ll find out eventually but as it stands now, I don’t know how anyone listens to that song and doesn’t dance. I looked over at my dreaded walker and discovered that I could boogie to the best of my ability within its’ bars. I thought of the elderly neighbor my dad spoke so admiringly of who would pull weeds from her walker and I thought “if Lisa paints this thing leopard print, I could stand and boogie for a song or two.” Then of course I over did it – but at least I know I’ve got one dance in me and I will bust a move as long as my walker ( newly named Jimmy “JJ” Walker) or someone else can hold me up.

Friday, August 22, 2008

Camp Idol

If you can, please tell me your name when you comment and a little bit about yourself because I love what you have to say and want to know you better or maybe I just don’t know that I already know you. I do love all of you though and believe me, pre-ALS Carla would have thrown up into her mouth a little bit to hear ALS Carla say that. People change. Thank goodness.

Meanwhile back in ALS land I had a good clinic appt. Besides the Maximum Inspiratory Pressure or MIP score, which dropped from 52-35 and the tongue problems which Dr. K could clearly see but not hear (big ups to voice training!) I’m holding my own and have a lot of strength in my arms (not hands) and legs. My lithium dose has been reduced and I’m back to an every 3 months visit instead of every 2 months. Jodi, the mama-bear clinic manager and OT lent me a documentary about a comic writer in LA named Scott Lew. Funny cat. I saw a lot of my decline – the way he made use of his hand, the way he walked using his Dad’s shoulder, napping with the annoying bipap machine etc and I also saw myself in the way he laughed through it all until the tears would ambush him. I could really relate to him though I am not looking forward to what clearly lies ahead. If you want to be inspired, I’d check out the DVD which is called “LIVING WITH LEW.”
( I’m not up for watching that kind of documentary in general but in this case I’m glad I did.

I spent the last two days at the Muscular Dystrophy Camp learning from 52 gurus – kids from 6- teens with muscular dystrophy. Some of them had symptoms so mild you would never know they had a disease and one girl had a 24 hour nurse, a tracheotomy and oxygen machine and almost no movement at all. I fell in love with several of them including Angelina – a pretty dark haired girl with streaks of green and yellow in her hair who sized me up with a somewhat inscrutable look then asked “Are you riding that wheelchair for fun or is something wrong with you?” “ I have ALS” I said. “ I can walk but I fall down and get tired.” “Me too” she replied. Once I passed her sniff test, she and her buddies – a couple of live wires themselves – coached me on how to be Paula Abdul for “Camp Idol” where I was to be a celebrity judge. “If you don’t like someone’s singing, just compliment their shoes” she told me.

I also loved Adrian and Callum – both 7 year old rappers. Adrian rocked the mic so hard from his wheelchair I threw my scarf on stage ( it takes wayyyyy to long to get my underwear off nowadays and it might scar him for life anyway). Callum – a round, pugnacious little fellow straight out of Little Rascals did a hilarious wriggle that was meant to be a “hyphy” dance and said things like “All the babes say YA.” My eyes filled with tears of fury when I was told that this little kid asked his doc for a power wheelchair because he wasn’t fast enough to escape his tormentors at school on his wobbly feet. I wanted to go to that school and scare the shit out of each and every one of those little bastards. The angel doctor is getting him the power chair.

I sang at the camp at the request of the director the perhaps ill-advised choice of Kiss by Prince. I’ve now been hooted at and catcalled by kids in wheelchairs with fatal diseases. I can die content. I would sing “I just want your extra time and your…” and they would holler “KISS!” Heaven. I was aware of how much my voice has deteriorated even since the last time I sang it and just when I felt the dark clouds descend, I looked at Hannah who can’t breathe on her own and V who may not make it long enough to be back at camp next year and Daniel who fell down while singing and just laughed and kept going and I got over myself real quick.

If I’m physically able to, I’ll be back to camp next year because I was genuinely sorry to only have 2 days with these awesome kids.

Tuesday, August 19, 2008

Another Retort

"Your task is not to seek for love, but merely to seek and find all the barriers within yourself that you have built against it. " Rumi

So someone wrote me recently to take me to task about a few things. One concern she had was my use of the word “dying” instead of “living with”. Fair enough. We heard that a lot in the 80s with AIDS. Just one problem. We are all dying. Life is a terminal condition and being in touch with that inevitability has its upside. Just ask Buddhists who meditate on their own deaths. Now I haven’t wasted time on TV since 97, but there were lots of other time sucks in my life. Knowing I have a fatal illness makes me think hard about what I want to do. I think that’s a good thing. Think about it: if you knew your time on this planet was limited would you sit at home watching TV or get the hell out there and live some life? I respect people that don’t want to believe they will die, that don’t want to contemplate any other realm than this one and I get it, believe me I do. I love life. But I also love the truth.

The other thing this person was upset about was the auction of the picture of my ass. Now I bet a lot of readers don’t think that’s the greatest idea either but they realize that we all have our way of traveling through this world and if no one is hurt, why expect people to live just like you do? It would be boring if we all auctioned our ass and I wouldn’t dream of imposing it on other ALS patients. Likewise, I wouldn’t take someone to task if they did a BINGO fundraiser and accuse them of making ALS patients look as dull as dirt. That perspective is mine alone. Likewise, BINGO-oriented people should let me do my thing.

Finally, this well-intentioned lady read the blog and thought I was presenting myself as a “victim.” Say what? I am alive, living fiercely, loving intensely, laughing loud and drinking it all in. I am making music, making whoopee, making blogs and making plans. I am drunk with love for this beautiful, flawed, silly, tragic, hilarious world and I’m damned proud of how I’m coping. I love so many people -even this woman who may be judgmental and a bit of a buzz kill but she has also lived with ALS for a long time and that makes her very courageous and worthy of my love in my book (though I don’t want to meet her as she suggests.)

I’m not here to be the spokesmodel for ALS. I don’t write this blog to inspire the ALS community or anyone for that matter. I write it because I’m an artist and we take the events of our lives and try to make sense of them by turning them into something. I write it because I had some bad luck and I’m struggling to understand it while accepting that I can’t. I write it because I think people need to read about flawed and funny people. Yes, it’s got a lot to do with ALS – it’s only been 9 months – give me time – but more than that, I want to write about, celebrate, sing about, BE IN life. I am Carla - I am NOT ALS.

This lady also asked me to think about my son. I do. Every damned day. And I am setting the best example for him I know how. I am showing him that people can mess up and be loved, can endure hardship and laugh themselves stupid, can lose it all and gain more.

So to those of you who write your encouraging and loving comments – whether you are a friend or a stranger, I love you and please don't write angry blog comments to this lady - she thinks she's doing the right thing. For those of you who don’t like what I have to say or how I’m living up in this bitch, I might still love you but implore you: don’t read the blog then you’ll be happy and I’ll be happy.

As for me, I am going to keep snogging and mooning and telling evil jokes and loving and laughing and one day I’ll get cremated in a tight red dress, pushup bra and fuckme pumps and a mischievous grin on my face.

Sunday, August 10, 2008

Advice to My Son

When I look back on my life, it’s clear to me that the single most successful relationship I ever had was with you. With you I was able to give without expectation of getting something back. I was able to give you room to be yourself and to love whoever showed up. I never needed you to show your love in a specific way for me to be sure it existed. I was never afraid of your anger, your grief, you annoyance. Maybe it would have been tougher with a girl but from day one I saw you as an individual and never needed you to think and feel the way I did.

You taught me how to be better in relationships and I use those skills now in my friendships with others.

You never ever called me “mommy”, always “Carla,” no matter how anyone tried to persuade you. After a time, I came to hear “Carla” from you as “mommy” and my heart swelled in the middle of the night when you would scream “Carla!” after a nightmare.

From this I learned – let people be in relationship with you and express their feelings for you the way they are able to. Don’t make assumptions based on how you would do things.

Every time you get angry with me ( which is not often) there is a part of me that is so relieved that you trust me enough to express the scary feelings. I try to see beneath what you’re saying to hear what you’re feeling. I rarely feel defensive and I try ( not always successfully) to never answer you with “Yeah, but you….”

I don’t have such luck in other relationships but I’m working on it. People need room to have their feelings and it’s so hard to give them that room.

Since you were the kid and I was the grownup, I had to learn to be clear with you if something didn’t work for me. Banging pots and pans around in a sullen way hoping you would read my mind was not going to work. Yelling would be abusive. I had to say “When you do _____ it makes me feel______. I would like you to ______.” It always worked – not because I was a childrearing expert (“Do you hear that Ben, he wants to rear your child” – Knocked Up) but because you were and are so utterly reasonable.

I have not been so clear in relationships. I thought that passive aggressive jabs would adequately convey my displeasure and failing that the silent treatment. I could go months not talking to someone and they didn’t even know they were being “punished.” You taught me to tell people what did and didn’t work for me.

You taught me how to just enjoy the present moment with the person I’m with instead of letting future plans or past issues mar our time. I remember watching a ladybug make it’s way down the sidewalk with you once. We watched that bug for a half an hour and it never flew away. You were so fully present with that damned ladybug I finally succumbed and enjoyed the experience. It was delicious. When I can summon that kind of presence with my friends my time with them is so much richer.

Finally, I never ever thought “what can this kid do for me?” It just doesn’t factor in. As a parent all you think about is how you can help your kid move along the path of life – sometimes by helping and sometimes by getting the hell out of the way and sometimes by painfully standing by as they make mistakes, experience hardships and endure injustice and learn for themselves.

I am no longer in a position where I can be of much help to my friends but in those rare times when I can do something for one of them I experience a deep deep joy. It’s actually true that it’s better to give than receive.

You are already such a remarkable person, but I still want to offer this unsolicited advice to you – especially if it helps you avoid some of the rough times I’ve encountered:

1) Let people show up for you the way they can. Don’t set up a friendship litmus test – everyone will fail.
2) Don’t be afraid to let people share their negative feelings – just don’t take them on yourself and don’t let someone emotionally abuse you. But if someone says “it bugs me when you’re late” let them share that.
3) Express your needs, boundaries, and expectations clearly. Don’t expect people to read your mind.
4) Be in the moment. If you’re hanging out with someone, really hang out with that person.
5) Be generous of spirit. Don’t judge all your friendships based on what you want.

There are so many other things I’ve missed but maybe people will blog comment their friendship advice.

You’ve only been gone a day and I miss your jokes, your political updates and just you.

Friday, August 08, 2008

Poets say it better than I can


by Tony Hoagland

This year Marie drives back and forth
from the hospital room of her dying friend
to the office of the adoption agency.

I bet sometimes she doesn't know
What threshold she is waiting at—

the hand of her sick friend, hot with fever;
the theoretical baby just a lot of paperwork so far.

But next year she might be standing by a grave,
wearing black with a splash of
banana vomit on it,

the little girl just starting to say Sesame Street
and Cappuccino latte grand Mommy.
The future ours for a while to hold, with its heaviness—

and hope moving from one location to another
like the holy ghost that it is.

"Migration" by Tony Hoagland from What Narcissism Means To Me © Graywolf Press, 2003.

Tuesday, August 05, 2008

The Worst Days

The worst days are the days when it hits you in the face that you don’t want this. When a series of events just sucker punches you into the realization that this is really happening. When you say out loud to someone ( and surprise yourself that it just occurred to you now) “I don’t want to die.”

The worst days are when you’re mad at your son for getting upset about stupid little things when you are dealing with something so huge, then you realize that he’s getting upset about stupid little things BECAUSE what you’re dealing with is so huge and it is tearing him apart. You are still mad but all you can do is listen and try to understand. He doesn’t miss anything and that’s a blessing and a curse. You are an expert at stuffing anger and finally you can put that skill to good use.

The worst days are the days that you know are going to come closer and closer together. The worst days are the days that you will fondly reminisce about because even though it was hard and you locked yourself in, you were able to get to the bathroom on your own. The worst days have rays of sunshine – your extremely mature brother sending you a filthy song over the internet, your dad writing a deeply moving blog comment, your former students coming over and laughing a lot, a kiss from a very handsome man and of course homemade guacamole.

The worst days come after the best days and if you squint your eyes tight enough, off in the distance you can see another best day in the distance, gradually looming larger and larger.

Sunday, August 03, 2008

Give me excess of it

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