Wednesday, January 06, 2010

Like our blogs are holding hands

I read about Jason's New Year’s resolution on his blog. He resolved "... to turn every moment of my life into a song of praise." He closed the blog with this quote from Hafiz which I'd like to steal and just lie to people and say I wrote it:
“It is all just a love contest. And I never lose.”

On December 26 I marked the 2nd anniversary of my diagnosis of ALS. The night before the diagnosis Mac, my dad and I had gone to my favorite Burmese restaurant in San Francisco. My Dad opened his fortune cookie that night and read out to us the words "You will have very good luck in the near future." He carefully put the fortune into his wallet and said "I'm going to hang onto this one". The following morning Edith, my Dad and I sat in a room while a neurologist told me I had this fatal and incurable disease. I know my Dad said things after the doctor left us alone and I imagine one of them was that he loved me, however the first thing that I remember him saying is " I'm throwing away that fucking fortune."

Call me crazy but that's the restaurant I wanted to go back to on this weird anniversary. So there we were again, Mac regailing us with more information on the health care plan than I could understand in a normal-length lifetime while my dad fed me.

Afterwards, my Dad dropped Mac and me off near Union Square where we braved the rain and the outrageous herd of humanity out looking for a good bargain. At one point we got separated in Macy's. Mac had my cell phone as well as his own. I was the proverbial lost kid. A gentleman helped me out by calling Mac and telling him where to find me and I was really glad for cell phones because it would have been really humiliating to have some loud speaker say "We have a red-headed woman in a wheelchair at the customer service desk. She's wearing a black coat and is looking for her son. If you have a lost parent, please come to customer service to claim her." Plus, if someone gave me a fucking lollipop I wouldn't be able to hold it.

So there we are beating our way through the throngs and the rain has soaked me right through and I can't think of a more opposite anniversary than last year with all my friends in a circle at the beach holding candles. But there I was in the BART with my favorite person on the planet and we're looking through the car and there is this man with his two kids and they are getting on his nerves, I can tell. He's answering them but he's not listening at all. He wants them to shut up. And then there is this couple not speaking to each other staring straight ahead kind of dull-eyed. A young guy is listening to some music and someone else is texting and I say to Mac "look at that guy. He doesn't even know what he has to lose, yet he's one thin hair away from losing it all. Or one moment away from falling in love with his kids all over again. None of these people know that they are balancing on the head of a pin and this might be one of their last best moments." Mac nodded either in agreement or to stop me from lecturing and asked if I needed more morphine, but it was an amazing moment. Soaking wet after an irritating day which marked a huge event in my life and yet.....

being with Mac that day I felt so alive and so real and so true and so lucky that enough bad things have happened to me that I know what I have. I know that a boring BART ride at the end of a crazy day can be miraculous and wonderful.

Sometimes when I read my brother's blog I get the same feeling that I got on that train. It's this feeling that awe and wonder are all around us waiting patiently for us to look up from what we are doing and say "Oh look -- you're here. I didn't see you come in."

Hafiz and Jason are right. It really is all a love contest.

And I never lose.

14 comments:

Anonymous said...

wonderful. :)

Kim

Anonymous said...

I'm a very competitive person. Let the contest begin...

Anony-muse

GretaKoenigin said...

I am VERY lazy, but am willing to give up housework and jogging to participate in the love contest. Excuse me while I turn off the TV that my sweet 5-year-old is watching. THANK YOU.

Anonymous said...

i hear you
loud and clear
you are always loud and clear
and that's a good thing
for those of us who
may forget
what life is REALLY all about

you have it down
all the way
all the way...

we love you, carla

Anonymous said...

Hi Sweet Girl,

So beautiful and so true. How short our time is and how we take it so much for granted. What a blessing you are to make us (your muselings) look at our lives and to make the changes we need to make our lives more complete. To recognize those we love and to appreciate them more, to tell them we love them every day that we have the opportunity and to not waste a minute of the time we have together.

Love,
Pat

Anonymous said...

Now, Thieving Time, take what you must-
Quickness to hear, to move to see;
When dust is drawing near to dust
Such diminuations needs must be.
Yet leave, o leave exempt from plunder
My curiosity, my wonder!

~Mark Antony DeWolf Howe~

Jessica said...

The way you write about your relationship with your son is always touching -- thanks for sharing that love with your readers.

xo

Anonymous said...

We are all so lucky to be alive. I know I am very very grateful for everything, even the annoying, piss me off things that I used to moan about. I am alive experiencing everything as much as I will let myself experience it. What greater gift is there? J

Anonymous said...

I just started to read your brother's blog. EVERYONE! READ THIS BLOG!! You will learn so much, so inspirational, so intelligent. Does a genius blog writing gene exist? Because all three of you have it, you, Jason and Maclen. Perhaps you all inherited it from Jack, who had it all along, before blogging was possible. Brilliant family. Thank you all!

risa said...

Dear Carla,

Have been reading your blog for the last 6 weeks, since my mom was diagnosed with ALS. Your spirit
and love and humor has made some dark news feel a lot lighter. I'm in SF, would love to meet you and Mac sometime. You guys are clearly rocking the love contest, keep it up.

Happy new year!

Risa

Justine Tatarsky said...

Wrote this poem the day after seeing you
and your film at the COM. Supposed to edit it, but we'll ALL be dead before I do, so here it is as is. I am crying for you today. I am laughing for you today. Much love and respect,
Justine Tatarsky

Better Late...

The night I met my husband
I followed him
into the bathroom
at a party
my interest in
seeing his penis
as natural as our
conversation---
as without charge

and then last night
that man who orients me still
left me lost as he rushed off
toward the Men's
at the reception
for the film
about Yyou

about you (Y).

Ten minutes
Almost late!
Where's the Women's?!
gotta pee!
gotta hide!
from the Love
and the Eyes
in the halls
of the film
about Yyou

about Y (you)

So much to touch
discover
could I be uncovered
in the halls of the film
about you

And then You
in your wheelchair
appeared

golden and beautiful
as ever
Redhair

appeared
in your wheelchair
and dying

where before
you had stood
for so much living

Into your resting room I veered
missing all signs
that it was closed
to the love and the eyes
in the halls
of the film
about Yyou

Into your sanctuary veered
where you were hiding
from the love and the Eyes
in the halls
of the film
about Yyou

into the Woman's

and i in lower case of shyness
disoriented by your face
the added silver
to your gold
your body's change
humbled more to be remembered
and searching for
our souls, our eyes
hesitant to hug no time to find
ourselves our minds
somewhere to pee
and late to see
the film of you
hurried through
seeing You
instead
and never said
goodbye

There are many corridors
to sacred and forbidden
rooms of rest, in life and in our heads
I am grateful to have stumbled or been led
to that one

So to the wind with this ridiculous receipt
of the beautiful Gift that is
You--Carla!

rozebudz said...

A lovvvvvvve contest...yeah!

Kinda reminds me of "THe LoVe PaRaDe"-- a lonnng novel written by the college kid in THE WONDER BOYS novel by Chabon and movie with Michael Douglas and Toby McGuire.
A novel of a love a new love of life's parade in me reading you.

Greg said...

Wow, Carla. A-MA-ZING. Pls, stick around so that I could learn from you to live - and I may need years for that.

Lauren Mackackackack said...

Sometimes I forget that we're all actively dying... and that dying is a gift. Thank you for your incredible words.

"Come, my friends,
'Tis not too late to seek a newer world.
Push off, and sitting well in order smite
The sounding furrows; for my purpose holds
To sail beyond the sunset, and the baths
Of all the western stars, until I die.
It may be that the gulfs will wash us down:
It may be we shall touch the Happy Isles,
And see the great Achilles, whom we knew.
Tho' much is taken, much abides; and tho'
We are not now that strength which in old days
Moved earth and heaven; that which we are, we are;
One equal temper of heroic hearts,
Made weak by time and fate, but strong in will
To strive, to seek, to find, and not to yield."
-Ulysses, by Lord Alfred Tennyson