A friend of mine was asked by her son “when do people die?” She is known for her pithy remarks, which are proudly reported to me by her piano player husband. One of my favorites is when she referred to her son’s accident as an “out of potty experience.” On this occasion however she was particularly deft and answered “People have to live their whole lives before they die.”
I like that.
So I’m up at Harbin (nudie capital of Northern California) living my life and Ali and I came to this startling revelation: I am having a great life right now. Yes, I have this fucking disease but I’m having fun. I don’t work, I have a super kid, I like where I live, I have an embarrassment of wonderful friends and family who would do anything for me, I do crazy antics, fun gigs, write about things I love, get love in all kinds of forms, make lots of music, have nice men who are interested in me – the list goes on. Who wouldn’t love my life?
Since the Chronicle article I have had numerous people write this blog with their suggestions of how to cure me. I am grateful for the concern but wish I could make people understand I’m not interested. I liken it to betting on a sports team. Would you throw your money at the Boston Celtics or the Atlanta Hawks? Boston of course since hell will freeze over before the Hawks win…for now. The Celtics are cancer and the Hawks are ALS. The bet money is my time. I’d waste my time on a cure for cancer because there’s a good shot at success. With ALS the majority of my time is best spent enjoying myself. And who’s to say which cure is the right one? Should I try them all? Pick one out of a hat? Use the I Ching? What if they cancel one another out? Some of the cures propose a diet that I have more or less been on since 2001 – does that mean the diet actually causes ALS?
I don’t mean to sound ungrateful but I need to emphatically state a few things.
First of all, I believe healing and curing are very different. I have been on a healing path for some time now and I’m grateful for it. Second of all, this is my life and it’s shaping up to be too damned short. I get to pick how I do this – no one else. Third of all I want to spend every blessed minute I can in sweet surrender to whatever this life has in store for me. I will take the shit and make shit-ade.
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5 comments:
Carla,
Amen. I couldn't agree more. You write so beautifully, and that was perfectly said.
I lost one of my closest friends to ALS a few years ago. We did what you are doing--had fun and enjoyed every minute we had together.
Hugs to you,
Patricia
You are almost unbelieveable but since I know both your parents I am not surprised at your strength, your wonderful sense of humor, and you gift for making all of us grateful to live each moment of our lives. Carla, I think you have a better chance of beating this disgusting disease than anyone else on the face of the earth. Your blogs are what I look forward to each and every day. You brighten life for all who have the gift of reading you.
A Gladstone very old girl Pat
Bravo boundaries!
carla beautiful carla,
i am grateful beyond words for your writing and your heart.
i loved this dispatch from nude-land, and as always your glorious honesty.
xoxoxo
stephanie
i hope to meet you one of these days. you have changed my life for the better in so many ways. i wish you could only know how many! i wish i could so the same for you!! i don't know of or espouse any miracle cures. what i do know is that i understand more about pure love and the living of life from having read your writing on this blog - such richness of experience.
thanks. again and again and again!
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