What does dying feel like? (4)

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.