Wednesday, July 09, 2008

Stay Cool

There is a piece about me in today’s SF Chronicle. To check it out, go to
http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2008/07/09/DDP811L35D.DTL
It's a plug for Friday's gig which you can read about in the blog below.

I’m sitting on my deck, which has been beautifully re-imagined by Kris and Wendy. The wind chimes are chatting to one another and a moppy headed dude just rode by on his bike and waved up to me and said “stay cool” in a most endearing and comical way. It’s starting to cool off and slow down and for the first time in I don’t know how long I’m alone and not sleepy. It feels great. I’m happy.

I love being alone. I love writing this blog, staring out at the hills, listening to music – you name it. I never feel lonely when I’m alone but I often feel lonely at a party. Go figure.

Monday was clinic day. Dr. M has been appointed ( by my heart) the health professional with whom I cry. We talked about breathing machines, more time in wheelchairs and her concern that I’m alone too much. That’s where the crying started. I am not ready to give up my independence, my chance at a love life ( I can’t walk good but I’m real cute!) and my alone time with my son. I know it’s coming but not yet, please, not yet. Dr. M is a tiny slip of a thing with absolutely enormous eyes and blond hair. I found it cute at the last visit when she told me I needed to gain weight because I’ve got about 30 pounds on her. She’s so tiny that if I sat on her she’d look like a cartoon pancake doctor. She’s very thorough and informative and compassionate and I just love how totally different all the various personalities at the clinic are.

I also saw Michelle the pt, who is this tall dark sexy woman who could be the super villain in a spy movie who seduces the otherwise invulnerable hero with her impossibly long legs and sleepy bedroom eyes. (Don’t worry, Michelle, I’m straight) . She’s very laid back but also incredibly thorough, with a good sense of humor and incredibly supportive.

We bumped into Dr. K in the hallway, who never fails to make me laugh. I absolutely adore his lack of decorum, which humanizes this whole crappy deal immensely. I imagine he’s quite brilliant because he doesn’t have a doctor-type demeanor (unless your baseline is Scrubs) and I can’t visualize him kissing ass or eating shit ( thank god – what a thing to visualize!)

Got measured for the permanent wheelchair (the permobile) which will be chili-pepper red with red hubcaps. Alas, no spinning rims. My triumph of the day was making Mike the wheelchair expert (and drummer) blush. That’s my second Forbes Norris blushing victim! I’ve still got it!

I’m usually wiped out for a day or two after the clinic. I expect it now. A routine-ness has set in around this slow losing of everything. It’s hard to describe how unbearable and how banal these milestones are. Life is a chugging train that’s hard to derail just because you happen to be having a bad week. There are still birthdays, gigs, weddings, calls to answer, errands to complete, dishes to wash and so on. I find it comforting and sometimes so frustrating that I want to scream then I realize I am screaming at the top of my lungs but no sound is coming out and when I look in the mirror, I’m actually smiling.

12 comments:

Anonymous said...

smilin' and screamin'
you know it's the same release...

(keep on doin' both, carla!)

Anonymous said...

thought you might enjoy this!

http://youtube.com/watch?v=zcraZNGfwh0

Molly said...

Dearest Carla,

Up late on this hot night...quiet and alone for the first time in ages too. Dad's asleep, Henry home asleep after his first big day of laboring work on a building site in Sausalito. and living large with friends in Stinson afterwards. My alone time with him is pretty nil. I love your writing, it is so beautiful and honest and draws me closer to you, oh wonderful woman.

Molly

corey fischer said...

I don't know if you remember having breakfast at the Half-Day Cafe some years ago talking about COM, me teaching something maybe, blah blah. I just found your blog which so many people have been telling me about and yet I kept stalling which gets easier with every new gadget-widget-gidget somebody throws into the cyperspace. And now I've been reading backwards and am letting the welter of feelings have its way with me. How amazing you are!
I am so deeply grateful that you're choosing to share your experience of what we're all going to go through in our own ways, some sooner, some later. Your words are luminous and numinous and alive as a river. You're out ahead calling back birdsongs and groans and hosannas. I know I'm one of a multitude who feel the same gratitude. This must be why god created blogs.

I will keep reading, backwards and forwards, so keep writing.

May all that you are giving return to you as the pure manna it is, bringing you everything you need on this trip.

Susan said...

I teared up on the way to work when I read the Chronicle article. Could not believe this horrible disease could claim such a spunky victim but somehow it finds the nicest and sometimes spunkiest victims. In my late husband's memory I created a pendant which can be worn as a necklace with leather cord or used as a keychain. It says "Kick ALS" in the shape of an hourglass. I'd like to send you one. You can check it/me out at www.bodiedesignstudio.com. My love and support to you, Carla. Susan Hunter

Chandra-Shekar (Slim) said...

Dear Carla,
I had never heard of you till I read the piece in the Chronicle. I was deeply touched and have read your blog and listened to some of your music. It is wonderful.
I lost my wife to multiple Myeloma three years ago. I am a brand new recording artist and just released a healing CD called "The Magic of Gayatri". It is about the Gayatri Mantra which I chant. May I send it to you please?
Many blessings,
Chandra-Shekar
www.magicofgayatri.com
gayamusic@gmail.com

Anonymous said...

read the chronicle article - you are beautiful. thanks for the humor and inspiration, carla!

Anonymous said...

I am so overwhelmed by my desire to come and smother you with love.


Kim

Liz said...

Hi Carla...
I read your piece in the paper and was moved to laugh and of course then cry. I'm still a blithering idiot from giving birth 9 months ago - who knew! I just wanted to let you know that you and your wonderful spirit touched me. I wish for you that do you get as much of that alone time and time with your son as possible. My heart goes out to you guys.

Anonymous said...

i know a lot about this disease you should know. call me at or email me at riverthenuts@yahoo.com. 510-520-8994. alex

sjg:o)) >^..^<>^..^<>^..^<>^..^ said...

Carla: You were quoted on the "Doonesbury" website:
"For those of you who don't know, I was diagnosed with Lou Gehrig's disease a couple of weeks ago. Which sucks. Because I hate baseball. I'd really much rather have been diagnosed with a basketball disease. Maybe Wilt Chamberlain disease. That's the one where you have sex 20,000 times and then you die."
-- singer Carla Zilbersmith, updating fans at a concert

Brava!

Anonymous said...

From Doonesbury on Slate.com, I found my way to your blog.

How extraordinary you are.