"Your task is not to seek for love, but merely to seek and find all the barriers within yourself that you have built against it. " Rumi
So someone wrote me recently to take me to task about a few things. One concern she had was my use of the word “dying” instead of “living with”. Fair enough. We heard that a lot in the 80s with AIDS. Just one problem. We are all dying. Life is a terminal condition and being in touch with that inevitability has its upside. Just ask Buddhists who meditate on their own deaths. Now I haven’t wasted time on TV since 97, but there were lots of other time sucks in my life. Knowing I have a fatal illness makes me think hard about what I want to do. I think that’s a good thing. Think about it: if you knew your time on this planet was limited would you sit at home watching TV or get the hell out there and live some life? I respect people that don’t want to believe they will die, that don’t want to contemplate any other realm than this one and I get it, believe me I do. I love life. But I also love the truth.
The other thing this person was upset about was the auction of the picture of my ass. Now I bet a lot of readers don’t think that’s the greatest idea either but they realize that we all have our way of traveling through this world and if no one is hurt, why expect people to live just like you do? It would be boring if we all auctioned our ass and I wouldn’t dream of imposing it on other ALS patients. Likewise, I wouldn’t take someone to task if they did a BINGO fundraiser and accuse them of making ALS patients look as dull as dirt. That perspective is mine alone. Likewise, BINGO-oriented people should let me do my thing.
Finally, this well-intentioned lady read the blog and thought I was presenting myself as a “victim.” Say what? I am alive, living fiercely, loving intensely, laughing loud and drinking it all in. I am making music, making whoopee, making blogs and making plans. I am drunk with love for this beautiful, flawed, silly, tragic, hilarious world and I’m damned proud of how I’m coping. I love so many people -even this woman who may be judgmental and a bit of a buzz kill but she has also lived with ALS for a long time and that makes her very courageous and worthy of my love in my book (though I don’t want to meet her as she suggests.)
I’m not here to be the spokesmodel for ALS. I don’t write this blog to inspire the ALS community or anyone for that matter. I write it because I’m an artist and we take the events of our lives and try to make sense of them by turning them into something. I write it because I had some bad luck and I’m struggling to understand it while accepting that I can’t. I write it because I think people need to read about flawed and funny people. Yes, it’s got a lot to do with ALS – it’s only been 9 months – give me time – but more than that, I want to write about, celebrate, sing about, BE IN life. I am Carla - I am NOT ALS.
This lady also asked me to think about my son. I do. Every damned day. And I am setting the best example for him I know how. I am showing him that people can mess up and be loved, can endure hardship and laugh themselves stupid, can lose it all and gain more.
So to those of you who write your encouraging and loving comments – whether you are a friend or a stranger, I love you and please don't write angry blog comments to this lady - she thinks she's doing the right thing. For those of you who don’t like what I have to say or how I’m living up in this bitch, I might still love you but implore you: don’t read the blog then you’ll be happy and I’ll be happy.
As for me, I am going to keep snogging and mooning and telling evil jokes and loving and laughing and one day I’ll get cremated in a tight red dress, pushup bra and fuckme pumps and a mischievous grin on my face.
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19 comments:
Go Carla go! More power to you and your fighting spirit! I think Bob Dylan said it best many years ago when he said, "He not busy being born is busy dying." And from my perspective you ARE BUSY BEING BORN (not Born Again!!) and doing the best possible job at it in your own (artistic) way. My heart goes out to you and my hat off to you as well! And although I agree that you are a VICTIM of ALS, you are doing your best to prevent it from VICTIMIZING you. More power to you!
I wish you much love and support in the fight of your life and wish for a miracle.
ELZ
Good God- please don't change a thing! I love reading your posts, especially the bits that endorse a middle-finger salute approach to terminal illness.
-Autumn
Agreed with the above Carla, just do your thing, and if you can sleep at night, I believe you'll be just fine.
Oh and keep fighting, once we get Bush out of the White House, perhaps we'll see some real progress on Stem Cell research... they already mentioned they're seeing some encouraging results for ALS. (Boston Globe ran a piece on it I think - google it)
Smooches (Remember... Kansas City... English Bloke... snog.)
You ain't nothing but a hound dog, Carla. And what a hound dog....there is no way you are a victim, a whiner or not setting an incredible example of grace in the face of.....should I say it? DEATH. The big word we are all looking at every minute whether we know it, like it or accept it. You have no idea the enormous effect you are having on others. I was afraid to open my heart again after so much pain and NOW...I am opening it....before it's too late. That's because of you. You are the high five, the cream in the coffee, the buds on a peach tree, a minstrel, a poet and a goddamned amazing human being.
Carla, this blog is another example of you being "of much help" to your friends. It's not the rare occurence you say it is. It happens every time you share your wisdom, your humor, yourself. Can't thank you enough,
Kathy
Dear Carla, you are such a free spirit. You say you will enjoy life to it's fullest and make the best of everything while you can. But as I read your blogs it seems to me that you have always embraced life to the fullest. That is such a gift. So many of us hold on to the past and mourn our losses, when we should be remembering all the wonderful experiences we have been a part of because of loved ones, both family and friends. You have touched so many people and are so loved. Someone wrote this, "Friends are angels who lift us to our feet when our wings have trouble remembering how to fly". Ain't it just so.
OMG Carla! it took me almost 3 weeks to get my hands working long enough to send you a fan letter (did you ever get it?) telling you that you are dealing with/accepting your illness in a way that I yearn to be able to do. Please don't stop being you
Carla,
Your spirit makes your readers want to reach for the sky and be the best on earth that we can. What you are giving Maclen is a lesson that few in life are ever privileged to receive. He sees his mother take on this illness and watches her inspire friends and strangers to be better able to face the unknown. How many kids can say that about their mother? The freedom that you give him to be himself is the greatest gift you could ever give. God help us all to have the courage and strength to face the disappointments that life has to offer and to make room in daily living for those who share friendship and love and give us the courage to turn away from those who cause hurt and pain. You only inspire and I, too, wish for a miracle.
Carla, I so look forward to reading your blog! What everyone says here is true. You have no idea how much you inspire people without even trying, by just being YOU. THANK YOU for continuing to share your precious life on these pages. You are deeply appreciated!
Sasha
if anyone would pay money to own a picture of my ass, I would not only send it free of charge but I also would offer to marry them.
You go girl. I love your approach...we all leave this planet one way or another, personally I prefer a rocket ride out of the galaxy.
peace.
Carla,
It is truly astounding that you find yourself in the position to defend the way you are living your life. But more amazing, is your ability to be honest yet with the compassion to allow the other person the space to get the learning...which you present graciously and with humor.
Oh please, The red pumps are on me and fishnets too if you like:--)
I love you Carla.
Thank you Carla for your honesty and your willingness to face death, it is there waiting for all of us. Easy for me to say because it doesn't seem close, but who knows. "Death is not extinguishing the light; it is putting out the lamp because the dawn has come." Rabindranath Tagore Mary (A Gladstone Gal)
The only guarantee in life is death. We all get to go there, how we choose to take the ride is only for us to decide. I am happy you decided not to take the safe (boring, lifeless) route but to live life like the adventure it is. Your love for life flows thru us all with your Blog. Please know you are loved greatly in return!
She didn't think about Mac, she was imposing her beliefs of motherhood on you.
If she read the message to your son, she would know he always called you Carla, never mom - he knew from the beginning he had a special gift in you and didn't believe you were just his mom, you were Carla and a beautiful, talented, firecracker of a person.
He wouldn't know you if you were less full of life than you have always been.
He would wonder where Carla went.
We would too.
I love you just the way you are.
Sometimes I struggle with how to tell you (or if I should) how much I'm going to miss you when you die. But then I try to put myself in your position. I would hope that people, who knew they would be impoverished by my passing (as I will be by yours) would not be so polite as to fail to tell me when I can still hear it.
Knowing that you will die, is a two sided coin. On one side is the pain of knowing that one day I won't ever be able to see you again, on the other side is the joy I get from the freedom I have to tell you that one day I will be in pain when you aren't here anymore.
Grieving a loved one is bad, grieving all the things you wish you'd told that loved one before they died, but didn't is worse.
This blog is a great gift to your son.
I love you.
and another thing...
I think a person should get to decide what kind of dying person they get to be every bit as much as a person gets to decide what kind of parent they are planning to be. And the rest of us should mind our own business.
We frown at meddlesome in-laws and nosy neighbors who tut and scold and wag their fingers as they tell a first-time parent such gems as "when my baby bit me, I bit him back" and "you better lay that baby down or you'll spoil him." It crosses the line.
And unless this lady has already died once and knows for a FACT that your way is a the wrong way, then she should shut her mouth and let you choose your own course.
After all, everybody is a
first-time "dier".
And one more thing...
when I was a young woman and my father died, the best moments were the ones where my father's friends gathered around and told me how great and important and brilliant my father had been and how much they were going to miss him.
This blog is a gift to Mac, he gets to see how important and treasured and how positively sick with an excess of devoted friends his mother is. I think that's pretty fucking fantastic.
Carla, I always look forward to checking your blog to see what pearls of wisdom you've tossed our way. In fact, I'm disappointed when there isn't a new post :-). You'll never know how many lives you're touching and how many of us you're teaching.
Don't change a thing and don't let the comments from the few who give you negative feedback get to you. After all, I think you're pretty much in uncharted territory -- sharing your experiences about dealing with this "bitch" AND getting comments back from people known and unknown to you all along the way.
Your insights, your humor, your spirit, your love of life and your unique Carla perspective come shining through like beams of light for us to catch and hold on to. I, for one, wouldn't want it any other way!
KK
Just read your blog. It fits with the Pacific Sun interview I also read today. Three things:
A few people get that we are all dying. When you get that, then all the other stuff is BS. You get to have "I love you Lisa" written on your ass. And have the photo auctioned off. You get to live the way you want, and while loving other people, never have to live for their fears nor with their standards, just your own. You get to wear purple. You get to enjoy being a nudist. Or riding a motorcycle. Or fantasize a cute guy (or woman, in my case). You get to not give a damn about whether others approve.
Most of us don't get that until we are 60 or 70, if then. I don't approve of you dying but I do admire that you've got it.
Ok. That was one. Another is that I'd like you to look at my website, www.emerging-images.com . If you get what I'm trying to do there, I would really like to photograph you for that project. I would like to try to make photos that capture the spirit in your interview--or whatever else is real for you. And I still don't approve.
And third. Every photo I've seen of you is HOT. And I still don't approve of you dying, but I do approve of your style, spirit and heart.
And your music.
Reinaldo
Reinaldo@emerging-images.com
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