In late December 2007 blogger Carl Zilbersmith, actor, singer, director, was diagnosed with ALS, a fatal motor neurone disease. Here’s how she greeted the diagnosis:
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.
The disease has progressed. Here’s what she said a few days ago:
Dear Friends,
I can’t sing. My speech isn’t clear enough to do any kind of reliable performing. I can’t walk across the room or do a Rockette dance kick and my “jazz hands” are a disgrace to performers everywhere. I used to be a performer and now it taxes me to sit in the audience for a whole show. It’s hard as hell to write even this much.
Here is how you can help: Open your arms wide and breathe in the beautiful fucking miracle of your brief existence here alongside the hummingbirds, the butterflies and Johnny Depp. Let your life be the raucous party it wants to be and don’t worry about god calling the cops. I still refuse to believe any god worth a damn is a buzz kill. Stand on your fabulous legs and give your ass a sassy wiggle. Dance, sing, laugh and make-out frequently.
Last Sunday she posted a song she has written “to address the need for an ALS song that was neither uplifting nor encouraging”. I’ve copied the words as best I could:
So this is what it’s like
Just me at the piano
In the middle of the night
So this is what it’s like
Trying to write a happy ending
While I’m waiting for the light
It’s 4am, so quiet
I can hear the blood pulse through my veins
And the sound of distant trains
Calling soft and low
So this is what it’s like
Thought you should know
So this is my goodbye
(???) my big red nose
But I don’t cry
So this is my goodbye
Watching everything I have
Just slip away before my eyes
And you know, life can be so beautiful
Sometimes I have to turn my head
Think of something else instead
Cos I don’t wanna go
So this is my goodbye
Thought you should know
So this is my goodbye
Thought you should know
Tonight I don’t wanna sing a stirring song
With a gospel chorus
And a melody that makes you sing along
And I won’t shine a light
Or offer inspiration
Or spread my arms in jubilation
Once my soul is bare
Tonight I’m all alone and I’m just scared
The things that I can’t do
Like watch my son grow up
Or just spend more time with you
The things that I can’t do
Take the pieces of my broken heart
And mend them with some glue
And I’m scared to sing this
Cos it sounds like such self pity
But let’s face it, this is shitty
So it goes
The things that I can’t do
Thought you should know
The things that I can’t do
Thought you should know
And I don’t wanna sing a stirring song
With a gospel chorus
And a melody that makes you sing along
And I won’t shine a light
And I won’t offer inspiration
Or spread my arms in jubilation
Once my soul is bare
Tonight I’m all alone
And I’m just scared
And I don’t wanna sing a stirring song
With a gospel chorus
And a melody that makes you sing along
And I will shine a light
And I will offer inspiration
Or spread my arms in jubilation
Once my soul is bare
Tonight I’m all alone
And I’m just scared
Here’s the song:
You can find Carla’s wonderful blog here. Thank you, Pam Vetter, for pointing me to it. I hope I have not breached blogger etiquette with all this copying and pasting, all done from the best of motives.
