Wednesday, October 01, 2008

Dear Muselings

I got ALS this weekend. I know, I know. I was diagnosed on December 26th, 2007. It has been confirmed and reconfirmed. I have used up many words discussing it but I didn’t know how good I had it. I am starting to get an inkling of what this disease is now and it’s a whole new ball game.

Now we (me and my super squad of elite action heroes that could make a Navy Seal cry from their disapproving glance) are looking for an aid.

Now we are trying to find a way to pay for an aid (Kathy estimates 11,000 per month).

Now people are over almost all the time tending to the most personal and intimate needs.

Now I’m afraid to walk a few steps on my own.

Now the Vietnamese girls at the nail shop cry and hug me when they see me wheel by.

Now I am shrinking and shrinking so I feel like a character from “Honey, I shrunk the Crip” and expanding and growing so I feel like I am about to have god or Mel Gibson or someone whisper the secret of life into my ear.

I am the Black Knight from Monty Python and the Holy Grail.
I am a float at the Macy’s Parade with a slow leak.
I am a dripping salt water faucet.


I am performing on Friday in Los Angeles. One of my angels, Jeannine Frank has set up the whole thing. I fear it’s the last show. I hope not. If you’re around, come hear it – I won’t be this sad – I know it because I’m never sad when I perform.

I won’t be back until Sunday so no blogs until then.

The show is 8pm at Steinway Hall, 12121 Pico Blvd at Bundy

By the way – you are the Muselings and I love you.

8 comments:

CT said...

Rest assured, if I were doing anything but opening night of Allen Taylor's show, I'd be there to hand you some water.

Lance Roger Axt said...

I've been following this blog for a while since the Chronicle article, and I have to say it won't be the last gig.

And that I absolutely adore you.

Pat Hering said...

I am very proud to be a Museling and, if I didn't have Grandma duty this weekend, would have been in L.A. to watch you perform. I so loved your performance in Berkeley. Next week I am going back to our beloved Canada, will have Thanksgiving at Sharon's (Gladstone) and will see your Mum again on the 15th when we have a mini reunion. You are in my thoughts and prayers daily.

Thank you for loving us, your Muelings, as we all love you.

maggie said...

Carla,
My heart is with you... I am holding your hand and whispering in your ear... I am marveling at your wonderful life, your vibrant soul. A million stars have lit the sky spelling your name... I am humbled by the depths of your soul and I am proud to be a museling...I love you without ever having met you.

peace.

maggie

blob said...

hi Carla,

Months ago I was trying to take my mind off of my mom's struggle with ALS and came across an article in SFGate about one of your upcoming performances. I unfortunately have not seen you perform, but I am a faithful blog reader.

I'm not sure exactly why i'm writing right now, but what you wrote really struck a chord in me as I had just seen my mom go through those things last year. Odd but, you were diagnosed 1 year to the day that my mom was. Talk about a shitty christmas present.

Anyhow to get back to that chord, I will never be able to fully understand what my mom (and you now) went through - I was there to help for just about all of it... but at least for my mom she eventually found a new level of comfort and happiness in knowing that she was surrounded by nothing but true and complete love.

Pls. don't get me wrong, everything about this disease is devastating. It is unfair, and it is bullshit, and most of all it really does seem to happen to the BEST people. The only goodness that it does provoke is bringing people together and the sharing of that love.

I am so sorry you are going through this, and I pray for you and your family of friends often.

I have lots of experience in caregiving a patient with ALS and should you ever need another pair of hands to help out I would like to volunteer. Please contact me at the email address on this posting should you want to take me up on this volunteer offer.

I hope you have a wonderful show this weekend,
-A.

Anonymous said...

love to you

love from me to you

love from all around the world to you

all the love that ever got born from all around the universe for all of time from me to you to lift you up and fill you up and hold you up and dry you up and soak you and bring you joy.

and more love if there's more.

Anonymous said...

Hope all went well for you Friday. Here's something that reminds me of your wit and style

http://www.youtube.com/watch?v=7DIc8jdra0o

Joanna

Anonymous said...

OMG, you are so moving! I feel nothing but love for you in this moment...my thoughts and prayers are with you in this most profound jag in your journey! ALS is so cruel, but thank you for voicing it so clearly as you are such a healer for so many. Merci, Maureen