I sent this out as my seasonal letter:
Last year at this time I wrote to you to tell you about my ALS diagnosis which followed on the heels of the dissolution of my 20 year marriage. I told you that like Lou Gehrig I felt like the luckiest person on earth and like Louis Armstrong, “I think to myself, what a wonderful world.”
I write this the day after my sister-in-love ( as my accomplice Mayra calls her) came within minutes of death. I write this as she breathes through a tube and a snow storm threatens to keep her separated from my brother. She has Stage 3 breast cancer and was rushed to the hospital yesterday with an intestinal infection and no white blood cells to fight with.
I write this with a failing right hand ( left one is pretty much useless) from a wheelchair where I permanently reside.
I write this as a former singer, teacher and actor having taught my last class, done my last show and this Thanksgiving at Yoshi’s, sung my last gig.
I choke on food and water, my speech slurs when I’m tired and breathing is now more labored. I need someone to dress and shower me and prepare my food. Sometimes, I don’t know how one person is supposed to take all this.
But guess what? I stand by last year's letter to you. I defy any cocksucker gods to try to get me to stop loving this beautiful fucking world and all of you who have sent me, Maclen and my family emails, blog comments, tasty meals and your prayers. You have buoyed me, sustained me, made me laugh until my larynx spasmed, given great (and shitty) advice, driven me all over the Bay Area, taken me to the hospital in the middle of the night and to the butterfly sanctuary in the middle of the day. Your faces shone out from the audience at gigs, your music propped me up better than any walker.
How could I possibly NOT be grateful when I live in, as Shakespeare wrote, this “brave new world that has such people in it”
Here’s a bit of what I’ve learned this year:
The thing you think is the worst thing imaginable can be endured and occasionally even enjoyed.
Losing things makes you fiercely love what you still have.
Plans don’t always work out perfectly. Big fucking deal.
If you read all the titles of all the self-help books and treat them as a kind of list of rules, you don’t have to waste your time on reading the whole book – Don’t Sweat the Small Stuff – nuff said! Bad Things Happen to Good People – no shit, Sherlock.
Show up to your own life. Disable the auto-pilot and live this bitch.
It’s more fun to write about snogging British men than it is to actually do it.
Even if it hurts to laugh, even if it makes you stop breathing, it is the best thing to do. Laugh every day.
Have as much sex as you can. I am as serious as a heart attack.
When you are facing death you won’t give a shit about the shit you have. You will yearn to hear your kid laugh one more time, for an old lover to hold you and for your friends and family to be near. You’ll remember wet sand between your toes, the smell of fall leaves burning, the feeling of holding a warm cup between your hands and soft lips touching yours.
When you have a fatal, debilitating illness, people will listen to anything you say so you
can pontificate until their eyes all roll into the backs of their heads. It’s awesome.
People always ask me “is there anything I can do for you?” Well, I am very well taken care of but there are two things:
1) Set aside time to live like you are going to die and then love the fuck out of your life and the people in it.
2) When you see someone in a wheelchair, don’t treat us like we just won a medal in the Special Olympics. When you patronize us, we silently judge you.
So there it is. My second annual weird-as-hell form letter. Have a great spending season – remember – the economy is counting on your conspicuous consumption.
As always, I will update regularly on the blog and plan to start vlogging in the New Year as well. I think vlogs will be posted at www.youtube.com/carlitazs.
With love, gratitude and a little crippled attitude
Friday, December 19, 2008
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Carla, I wish you and Mac and all the people around you a glorious season. You speak and we listen with open hearts. May you continue to love and be loved, because that is all we really have.
In the end I don't want to be known for what I have but for what I did.. I want stories to be told, I want people to laugh and toast me. I want Nuns to forgive me (I went to catholic school)I want to smile at you and know. May you forever find joy for the rest of your days.
your faithful museling,
As another faithful museling, I promise I will look at life as the treasure it is and will try to live each day to fullest. I will love more, laugh more, be more grateful for the small stuff, reach out to those who have slipped away and keep close those who are in my life now; all in the name of Carla Zilbersmith.
Thank you for what you bring to us.
Stay happy and feel blessed. So many truly love you. I thought you would appreciate this tale about a little girl with cerebral palsy and the Joffrey Ballet
Oh Carla! Thank you for your beautiful statement. Wiping the tears from my eyes, I know what you say to be true and that I need to hear it again and again. Have a joyous and peaceful holiday season with your loved ones. I feel fortunate to have found your blog!
To me your greatest bravery is your out-loud telling of the absolute truth about secrets and fears most of us keep to ourselves. You have the bravest heart to write down all the scary stuff I would never have the courage to have shared. You light the path that most of us find too dark to speak of. You are a huge shining beacon in this world, and you are doing all this good work for the rest of us while also trucking uphill in your wheelchair. I hold you and your sister-in-love in my heart.
Thinking of you and your world which is OUR world!
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