I made it through the night. Sounds like a song by Neil Diamond or someone like that. It’s a wonderful thing to sleep 8 uninterrupted hours. Besides the stomach issues which are better but still annoying, one thing that wakes me is the macabre dance of the fingers on my left hand. They jerk around like William Dafoe dying on the battlefield in Platoon only in this case there’s no Barber’s Adagio for Strings to accompany their poignant jitterbug. They seem to keep a schedule so never more than one finger is going nuts per day. I don’t know if this is a good thing or a bad thing. The thumb is particularly vexing since it jerks out sideways as if to defect from my hand. My attempts to stop the twitching are right out of a Charlie Chaplin film only in the middle of the night, I ain’t laughing.
Around six am comes the leg cramps, which go away as soon as I stand on them but some days it takes longer to get out of bed than others. The other morning I needed Kaila’s help (she kindly slept over a couple of nights) since I rely on stomach muscles to vault myself into a seated position at the edge of the bed and my stomach wasn’t having any of that.
I read last night that even positive stress is bad for ALS and weakens the body. I have no doubt that directing this show is taking its’ toll but what is my alternative? Give up all creative expression except for this blog? Too too sad. No thanks.
I love the process we are undertaking. It is going to be a great show – guaranteed to have several huffy Marin patrons walk out mid performance. My delightful students suggested I park my scooter at the exit door and look sad with a sign saying “Don’t leave, I have ALS.” They also suggested that I pop out of a coffin at the end of the very funny opening number saying “What? Too soon?” They get through the tremendous challenge of having a woman with a fatal illness falling over as she tries to demonstrate a jazz square, or not having enough air to finish a sentence or inexplicably bursting into tears ( an ALS symptom) by testing the boundaries of humor. Just what kind of joke IS okay? I welcome all of them if they’re from people I love.
Yesterday I went back to my therapist after 2 years away. She is treating me for free which is astonishing to me. I think what we will work on is how hard it is to take in all of the kindness I am receiving and not be able to reciprocate except with this blog. I think the blog works best for me when you all write in a la the Partici-blog and share something that is going on for you. The lady whose son joined the Marines blew me away. Hearing the little things that light your day or present a challenge and knowing that so many other people are reading your comments is nourishing. We are weaving together this community through this instrument of the internet which can be such a source of alienation. Write a comment about anything you want. It can stay anonymous. Keep writing about what makes life worth living ( have you checked lately? The list keeps growing) and I’ll think of a new partici-blog and post soon.
IN other news, I’ve mentioned this before but we’re drawing close to the actual dates: if you know people in LA, please tell them about the fundraisers happening on my behalf. The performers are all really funny and I’m going to get up there and sing a bit and try to make people laugh.
For info on all the fundraising efforts you can send people to www.quiltmamas.com/dmc - a website started up by Wendy ( one of my angels) and the other details are here.
Just the Facts: A CARLA-BRATION for Carla Zilbersmith: A Special Variety Night to celebrate & support a friend and artist in need!
When: Saturday, April 12 at 8pm
Where: Steinway Hall @ Fields Pianos * 12121 W. Pico Bl. (one door w. of Bundy * Level P2 under the store) * Park free in lot!
Price: $25 suggested donation
Reservations & Info: Jeannine@FrankEntertainment.com or (310) 471-3979
When: Monday, April 14 at 8pm
Where: The Hayworth Theatre * 2509 Wilshire * Los Angeles 90057 (between Rampart and Alvarado)
Price: $25 suggested contribution
Reservations & Info: www.thehayworth.com or (800)838-3006