Friday, February 27, 2009

Dying as a Work of Art

I am a performer who doesn’t perform. A singer and actor who can no longer sing or act. I have spent a lifetime using the happiness and heartache that has come my way as artistic fodder. I shamelessly poached from my own life and put it on the stage to the point that in the midst of a mugging at gun point or while being asked to fellate a creepy driver as I walked along a lone New Jersey highway or while walking 6 blocks to the hospital after my water broke because my baby daddy was too cheap to pay for hospital parking, I would console myself by thinking: this will make a great story if I survive!

So now I have this great material and truthfully, I don’t know any way to deal with it but publicly. I share with all of you because I don’t know another way. I am actor and spectator – watching in fascination at the comic and macabre tricks my body is playing on me, then reporting it all back to you with gusto and (I like to think) flair. I’m not blogging to help anyone feel better about their life or to offer a catharsis service – I do it because I don’t have a better idea. I was talking to my brother about this very thing and I was so grateful he got it, even though he is an immensely private person himself.

It’s becoming harder and harder to type and talking aloud is tiring and finding time when no one is around so I can talk aloud freely is hard. I hate to think that eventually even this blog will be taken away from me.

My right hand is very weak and will soon be as useless as the left one. With that hand will go the last of my once-treasured independence. It all becomes kind of ordinary - these little losses cut up into tiny digestible pieces –like god is playing Kathy Sprague! (Inside joke alert: Kathy always cuts my food for me –even the stuff I could maul apart crudely).

I hold onto the present moment like it’s a tree in a tornado. If I look back at my gorgeous life too wistfully I’ll crumble, if I look ahead to a time when I will be a prisoner in my body, I won’t want to go on. This is it, I tell myself. So you can’t sing? Then love how your bird sings along to all kinds of music. Dance in your wheelchair. Laugh with your son. Keep a brisk pace because if you slow down, despair will come nipping at your heels. Love, love, love then love some more.

And write about it all as long as you can.


Anonymous said...

We've never met...but GOD I hate the day I won't be able to hear from you.


Anonymous said...

Some people only get unconditional love from their family. You dear one get unconditional love from a lot of people that have never met you.

I certainly understand the potential pain of looking back. I have a hard time thinking about what things I once did, the joys they brought me.

Seems that no matter how bumpy our roads are...they all have bumps and we need to figure out how to deal with them...better shock absorbers or tighter asses. You have what sound like WONDERFUL external shock absorbers in your friends and family. The roughest ride is the ride inside your head and heart.

Your perspectives resonate with many of us. Whether you were acting, improvising, singing or teaching, they are all forms of the gifts of your expressions. Your words continue that tradition. If you get to a point where that is nearly impossible I hope one of your muses will continue to tell your story. Thankfully part of you has been captured on tape, text and music. Many of us should be so lucky.

I LOVE the fact you have a talking bird to keep you company :-). I love that you continue to reach out...for yourself and not necessarily for us strangers.

It is because of you I met Sarah Ezekiel and follow her story too. It is because of you I am more aware of this horrible disease. These are consequences you never asked for or perhaps care about. In the big picture, awareness is important to bringing humanity closer.

Do you know about "the butterfly effect"? A butterfly flaps it's wings in the Amazon and the effect eventually affects something halfway around the globe. Your gift of being who you are now and tomorrow IS being a butterfly, a beautiful warm feeling expressive butterfly.

I continually send you, your family and your muses love. -anon

Anonymous said...

I know exactly what you mean about only feeling the story has been told once it's been heard by a formal audience. It's the same for me. And when I'm not siphoning off stories at a steady enough pace I swell (and not in a good way).

Now that you can't perform any longer, I hope you will consider gathering your stories for a book. I will help you type them if you need a loaner finger (I hunt and peck, so you'll only get the one finger).

I think you are taking care of yourself in exactly the right way. Please, continue to resist the pressure you must feel ( when you make your musings public here) to put on a saintly cloak and be a spokesperson for how to die. You can only be true to one person's journey. That's your job. I stand behind your choices. You know best.

I love you so tremendously, and I hope I will see you again before you put the kibosh on entertaining groupies.

Keep on keeping on.

Kim Porter

Anonymous said...

it goes round and round
now and forever
we are with you on this path to everywhere

dear one, wise one
you are
with riches of honesty, humility
humorous beauty and straight up thunderous thoughts of reality

Anonymous said...

Dear Carla, I also love the perspectives I read from others. You may not have intended on your stories being a gift to humanity, BUT THEY ARE.

You dear Carla with or without an intention you are one of the reasons that eventually there will be treatment and cures for NMDs. You have attracted people that care for you and for all others affected with NMD.

There are many of us too that may not have money to help but would do anything else we can to help your world and by extension our world.

WHO YOU ARE is timeless. Our bodies may come and go but how we live, who we touch lives so far beyond us in time and space. Even if one can't speak other CAN FEEL.

YOU DO WHAT you can...know that you are loved and supported as much as can be. If you put a note in your blog for all of us to JUMP at a particular time or think of you at a particular know damn well everyone of us would and we would ask other to too.

Thank you for your gifts.


Anonymous said...

ok - we just have to find another way.
Maybe you can recycle old things you've written - plays, songs, poems.
Post audio of songs from your concerts and CD's.
Isn't amazing how much of you there is to share? You are showing us, (another damn lesson from Carla!) how the heart can extend out to infinity!
love, Susan P.

Anonymous said...

Carla is a diamond
Polished, unpolished,
Blue, yellow, pink, white.
Cherishing her brilliant hues,
We know she will not be here forever
But we know she will survive
In a time/place/manner
No one can predict.
She sparkles, is praised,
Loved, unknowable and
A diamond in a
Platinum pendant
Dangling among her sisters,
The Stars.

Anonymous said...

Italians find ALS gene

'First piece of jigsaw, ' researcher says

Anonymous said...

I had to reread it because I thought you said you weren't offering catheter services, and I thought "too bad" that could come in handy on a long drive.

Glad to be able to hear from you here. Saw Danna and Gary the other day and they remembered me because of you.


Anonymous said...

Carla, I saw you in your one woman show The Wedding Singer (is that the right name?) and having lived in New Jersey LAUGHED MY ASS OFF!!! I can vouch for your flair in telling your stories and also for the truthfulness of them.
I am honoured that you have chosen to share your flair with this part of your life too.
Love to you from all corners of the world!!!!

Anonymous said...

Hi Sweet Girl,

I refuse to believe the day will come when you won't be there for us. What would we do without you?? It just can't happen. You are what keeps us (your muselings) going when tough times touch our lives. You give us the courage to go on and face the challenges of everyday. You are so loved.


Anonymous said...

World Builder

This is so touching...wanted to share it with everyone. Something beautiful we wish we could do for one another. -anon

Fritz said...

I can't remember ever reading anything quite so heart-breakingly beautiful. I have to hurry up and finish this so before somebody catches me crying at work.