Saturday, March 21, 2009

Hello, how are you?

It took me half-an-hour to write two paragraphs of a blog, only to get Mac’s dreaded spinning wheel of death. I had to re-boot Matt Dictate and start all over. Nobody can call me a quitter.... at least not yet.

It’s difficult for me when someone I haven’t seen for awhile asks "How are you?" “Good” I will answer and mean it. "Really?" is often the skeptical response. How can I explain? Life is amazing and terrible, and hilarious and sad. Every day I face new hurdles and every day I laugh out loud.

I am in awe of the magnolia tree outside my window. I love my bird, who just foiled my voice recognition attempts by yelling “fuck ya" when I said "I love my bird," and who is continually messing up the program’s train of thought by shrieking "HI!" The bird forgets that she can’t fly and she falls rather unceremoniously, landing with a crash and squawking "Hello, how are you!" every time. She falls so much I would swear she has ALS. She is so adorable that she helps me remember to be good-natured when I fall.

It is really all a matter of attitude and perception isn't it? My niece hands my nephew some imaginary seeds, which she’s been carefully holding. She plants the imaginary seeds in an imaginary plot and shows her brother where he should plant the rest. He says no. She tells him he must plant them as she has instructed. Again he refuses so she grabs the imaginary seeds from him and walks away. My nephew is bereft . He cries tears only a toddler can cry as he displays his now empty palm to my brother who then has to ask his daughter to give back the non-existent seeds. This manages to placate my nephew. The power of the mind.

When I hear stories about my niece and nephew, I’m great. When I see the look on my brother’s face as he recounts them to me, I’m awesome.

So of course when I say "I'm good" it's true. Annabel and Atticus were playing a game and Annabel threw her hands up in the air and cried "I win!" And Atticus in turn threw his hands up in the air and shouted "I lose!" With equal delight. That’s how I feel – I mean like both of them.

Case in point: this bucking software drives me insane. (Matt Dictate wants me to call it “bucking software.” Sigh. Fine.) It takes forever to write one bucking sentence, then it gets the bucking names Annabel and Atticus correct on the first try.

What the buck?!!?

Okay, but if you look at it another way, how in the hell is it even possible that I am talking into a little microphone and words are instantly being typed? That is totally mind blowing. If I had had this disease even 10 years ago, how much harder would it have sucked?

Case 2: Sure I waited a ridiculous length of time for my wheelchair to be approved by DoucheNet….I mean HealthNet... but it arrives on Tuesday and it is chili pepper red!

I can choose how to look at things. That is the one thing this disease can’t take from me. That and love.

At least that’s what I tell myself as it gets harder and harder to feed myself and impossible to do most other basic tasks. It’s so surreal – I am so handicapped and yet I'm so damned good lookin'. (Please don't come after me for that one, PC disability police -it's a joke.)

But seriously folks....

It's helps me deal with the not so fun aspects of my life knowing how so many of you have shared with me that my illness has brought you in touch with your sense of gratitude. Knowing that so many friends and cyber friends recognize what an awesome gift it is to breathe, to eat, to walk, to type and simply to observe the life around us makes the bullshit go down a little smoother (and no, that is not intended as a mixed metaphor.)

I have to say though, all gratitude aside, I wish Matt Dictate were a person so I could give him a piece of my mind before kicking him in the balls. I bucking hate you Matt Dictate! (I'm feebly attempting to shake my fist. Matt appears un-phased.) By the way my friend, whose name I won't mention in case the ladies in her PTA read this blog, did not blog comment me the following, because she likes to pretend to be demure. As if. She e-mailed me and suggested that since it was MY software it should be called Max Dick taste.

So if you're wondering how I am, I am good. I am terrible. I am in love with so many things and I am so tired and so sad and so scared. Sometimes I want it to all be over soon and sometimes I want to pull the world to me with my hands on either side of it, draw it close and put my lips to it.

I want to stick my tongue in the mouth of the world.


Anonymous said...

Hi Carla, great posting tonight. I feel the same way most of the time. My partner has a (so far) incurable condition and is having a very difficult time coping. He doesn't read your blog; I wish he did! You are very inspiring. Many Blessings.

Anonymous said...

i was going to have fun with your last sentence about where you want to stick your tongue but at the last moment i chickened out.

everyone one of use reading your blog wants for you what you want, even if your desires change from moment to moment.

you are the epitome of class. this includes a classy sassy side.

we love you and your family, we love you and your muses, we LOVE YOU. i don't even face my meager problems as well as you do your major hurdles...buckin' a!

Anonymous said...

This made my headache worse on account of the hilarity. Love you so darn much!

Anonymous said...

I've been attempting to get the courage to write a comment on the chat group of my infamous acupuncturist. The topic is inspiration.
Instead I read your blog and viola! I'm so bucking inspired!
Lonny, the acupuncturist, is always berating us all to "raise the bar". ok - so you're inspired. But what are you going to DO about it??

"Most people have no authentic relationship to their own souls or spirit beyond the intellectual and are dead to the voice of the conscience. It doesn’t take a lot to blow their minds. The inspiration and excitement that come from initial spiritual experiences are, in the end, irrelevant but for the degree to which a person really changes and gives."

Yes, Carla, you are an inspiration like no other and it's through your ACTIONS that you keep the fires burning. You're not falling, you're diving!
Due to that, in case you're wondering, I won't be running to the computer everyday to get my fix from you, consuming your inspiration...
I am going to raise the bar, face my own small fears and desires and live an extraordinary life of courage and enthusiastic gratitude, and maybe I'll inspire people too.
With so much love,
Susan P.

Anonymous said...

one suck

stick your tongue in the mouth of the world~
go ahead
it will suck and lick you back
go ahead, do it
the sensation is realistic
sticky, sweet, succulent
and statistics prove
that one suck is all it takes

~Thanks to Carla Zilbersmith for poetic inspiration and line 1!

Anonymous said...

Dear Carla,

(Hangs her head in shame for having not visited in so damn long..)

Dear Carla,

I'd ask how you are, but you already answered my question! I hate to re-iterate what everyone has already said here, but you really are amazing and inspirational. I'd be whining and sucking all the air out of the room- well, maybe, I dunno, I've not been in your position before.

Lately, my life has been somewhat tumultuous, a year of surgeries to have chunks of my cervix sliced off, and a year of doing it without the aid of pain meds due to an addiction I'd developed for them, and now I'm healing.. Doing well, thanks to a pelvic exam and an attentive OBGYN who wanted to save me the trouble of cervical cancer. Dysplasia, phase 3, is a step below, and we caught it JUST in time. I feel like a truly dodged a bullet! I kept remembering how resilient you are during all of this, and it made me stronger. It helped me cope.

2 years ago I lost a young friend named Sandra, she had a heart condition due to excessive use of cocaine, (I didn't know her during that phase of her life, I met her later, after she'd cleaned up..), she was 21. To young to go, especially in such a painful way. Now I see you bravely fighting a debilitating illness, and it makes me think that God just bucking sux ass. But you keep a big smile not only on your, but everyone else's faces. I hope you truly are smiling inside, and not just saying it so people won't feel bad or worry.. But knowing you and how blunt and honest you are, I believe you when you say that you have your happy times. It gives me hope for the world, it changes my attitude towards people, it opens my eyes to possibilities..

When I first got to know you, you made me feel special and talented, at a time when I felt really insecure, and like I couldn't accomplish anything and had no talent. You built me up, and it wasn't fake, no pretense or bullshit, so I really took it to heart. I really wouldn't be the person I am today if it weren't for you; I'd prolly be slingin' burgers at Micky D's or something, married to a truck driver and living in a trailer with 20 babies.. With all my teeth missing! (Hope I haven't offended any truck drivers, or those with missing teeth, oops!)

Oh wait, I AM missing teeth, buck!

Oh well, could be worse.. could be A LOT bucking worse.. Thanks for making me remember that, thanks for making me laugh, thanks for making me FEEL and LIVE, and thanks for, well- just everything.
The world needs more people like you, calling out the bullshit, singing the beautiful songs.. Being who you are and unashamed of it. Bless your heart, Carla, muy amor!

lccarson said...

"I want to stick my tongue in the mouth of the world."

And another magical piece of Zilbersmith wordsmithing goes straight into my quote file. Thanks, glamorous stranger.


Anonymous said...