“I read your blog” people tell me. And I can see in their eyes that something in it has moved them. I see it in your blog comments. And I get scared that I can’t live up to this thing I’ve created. I’m scared that when the makeup and the clown nose come off, there is nothing there. Nothing to inspire, nothing to laugh at through the tears, nothing but the banal truth that it is getting harder and harder for me to just roll with the punches.
You see I am attached to the “me” that bravely faces this. I am attached to the wisdom I have gained from this experience and I am deeply threatened by the dark clouds that loom – clouds of fear, sadness, bitterness and frustration.
I want my body back. I want my voice to soar the way it used to. I don’t want to have to depend on people for everything. I worry that I will cease to be me – whoever that is.
I’m not writing this so you will all send me nice and loving comments. I’m writing partly to get through this feeling and partly to warn you that I’m not necessarily who I seem to be. My situation is remarkable, but I’m not.
The fierceness and consistency of the love I’ve experienced from friends and family has been humbling, life changing and overpowering. I feel like any self-pity I indulge in is like spitting in the face of this abundance, but those feeling blow over me like a tsunami and I can’t help but be so hurt and angry that I can’t open my change purse or that my son has to button my coat or that this is just the tip of the iceberg.
I want to go back in time and really experience things I didn’t know were a miracle – crazy dancing with my friend Daniel until I sweat buckets, running in a park with Mac and falling down together in the grass, taking a yoga class with a bunch of girlfriends, braiding my own hair, stage fighting, doing Wedding Singer Blues, boogie boarding and feeling the waves crash over me, opening my own jars and bottles and of course seeing an endless road of possibilities reveal itself to me.
I’ll be happy again, just not tonight.
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15 comments:
I love you just the way you are. :) You don't have to be inspirational or touching or deep or inspiring or transcendent. You can be bitchy and petty and bitter and full of rage and I will still love you.
Is this what the death throws of people pleasing looks like. ;)
Let the tyranny of pleasing others end!
Kim
Hey Carla,
I always loved you even when I was pissed off, envious, freaked out, crazy, fucked up or you were. Carla is Carla. Joanna is Joanna. We are all drowning and swimming together. It's also the time of the year. Everyone I know right now is DEPRESSED. It will pass. You and I both know that. I cried all afternoon because my mother is dying and she's 88. And my dog is dying and he is 12. And I am dying and living and struggling just like them and you and everyone else is every single day. I truly believe we all live forever somewhere better. And we're all eating chocolate mousse and deep sea diving simultaneously. And Will finally finishes Hang Time. I really do believe it. Hugs, J
Check out Andrew Cohen and Evolutionary Enlightenment. Most of us, 98% of us, 98% of the time, march through life from the very superficial perspective of ego and act as if our personalities meant something.
What your writing is showing to all of us is that this whole life and death thing is a completely impersonal process. we ALL take it for granted. we ALL want to feel good all the time. NONE of us want to feel pain or look fragile. But that's not the point. The most important point is to keep moving forward despite the fear, the anguish, the loneliness.
What's so beautiful about your writing is that it's from the perspective of the authentic self - the deepest part of ourselves that wants to live and create and laugh! And it doesn't give a f*** what anyone else thinks. MOST of us experience the authentic self on very rare, spontaneous moments. Otherwise we're caught up living lives masked by pretense of who we think we should be.
YOU have the good fortune of living CONSCIOUSLY at the razors edge. And yes, you'll have bad days because you're human. WE have the good fortune of getting a glimpse of what living authentically means.
Don't hide anything.
You're a guru now.
Let it rip!
love,
Susan P.
Amen!
Susan P. really summed it up succinctly...it is really knowing that the end is drawing nearer that the authentic self surfaces and all the facade drops away...your voice is becoming clearer in the everyday chatter, that that is what all of us experiences but are too afraid to say out loud. Thank you for your courage! You articulate so much of my mom's anguish. You are such a healer for me! In gratitude, Maureen
Carla,
You have to have those depressed days. We all have them and most of us aren't facing anything as challenging as you...But we all die. I could kill over with heart attack writing this comment and never finis.........
Seriously, you may have the unique opportunity to know what will take you from this earth, but you may not. Something else could pop up and take you tomorrow. What you've been given is the ability to see the world in a new light; to love harder, to give more, to appreciate everything deeper and more fully.
ALS is not a gift but with it has come many gifts. Still it sucks to see things fade away…One day you could, the next you can’t. And there’s no crystal ball to tell you, “This is the last time you’ll ever do this, so make damn sure you take it all in!” If there was I would have made sure to engage myself in every touch, every sensation the last time I made love. That was in 1999. Long story, won’t bore you except to say it would have been with a different man for damn sure!
You take it all in girl. Everything! Every time! Live thirty years in one, and when something else is taken focus more intently in another area. And be depressed when you need to be. Cry today so you can smile tomorrow, and know that you have given more in a short time than most of us will ever.
Yes, Carla! Let it all be. All those dark feelings are so real and understandable and human. Thank you for trusting your readers to bear witness to them. I hope you will use this blog in whatever way is most beneficial for YOU, and if that means entering the darkness and moving through it, so be it.
With love,
Sasha
I find myself utterly unsure as to whether I should write something serious and reflective, or something good-naturedly flippant and amusing (but hopefully still charming and warm in a slightly melancholy way).
Hey, I think I just did it!
I seem to be at a loss for the right thing to say so consider this message a big hug. See you next week.
Pat H.
Your writing wouldn't be inspiring or funny or any of the other awesome things it is if you were superhuman.
That you're human with fears and frailty is what gives it poignancy, and it's inspiring (to me anyway), because it gives me hope that we regular old humans might be able to rise to the occasion if need be. With humor even, and a minimum of hiding under the bed.
Hi Carla,
We don't personally know each other, but I have been reading you regularly.
I appreciate your blunt honesty of your post...I thought a lot about it, and was reminded of the phrase "valley of the shadow of death" and of how clearly you have voiced it. Great things come in valleys, though. Think of the majesty of the Grand Canyon. The most valuable lessons are forged in the valleys. Thank you for the expression that you are giving it.
On another note, I have been thinking of what you can call your readers. How about "ALS Marcues". Yes, I have invented a word, but why not? Anyway, it is an anagram of "carlamuses"
Love,
Nina
ninabaratiak@msn.com
Enh. You're going to be depressed sometimes. If you weren't, you would be too good to be true and we'd all be thinking, "#*@&ing Mother Teresa, why don't you shut the #*@$! up!" This just shows you're human and flawed like the rest of us which makes the days you're upbeat all the more remarkable and savorable.
Sorry it's sucking right now. It won't always suck.
Carla,
I remember my mom (who had ALS) spelling out to me that when she would dream she dreamt she was albe to walk and talk. she also said she missed eating tacos and drinking beer...simple things and she was not a simple woman.
I read your blog for your true voice... You speak to me on many levels. We all rush through life not stopping to actually live it.
The beauty of the internet is that you were able to create a supportive and loving community, I get to hear others speak and listen to what my sister Maureen writes (you didn't know you had irish sisters in your community?)
No need for superhuman strength unless of course it comes with a really cool outfit and cape... keep talking because we are all listening.
peace.
Maggie
Here is a poem you may like, by Jane Kenyon.
Let Evening Come
Let the light of late afternoon
shine through the chinks in the barn, moving up the bales as the sun moves down.
Let the cricket take up chafing
as a woman takes up her needles
and her yarn. Let evening come.
Let dew collect on the hoe abandon-ed in long grass. Let the stars appear and the moon disclose her silver horn.
Let the fox go back to its sandy den.
Let the wind die down. Let the shed
go black inside. Let evening come.
To the bottle in the ditch, to the scoop in the oats, to the air in the lung let evening come.
Let it come, as it will, and don't be afraid. God does not leave us
comfortless, so let evening come.
--
Jane died at 48, from leukemia. She is one of my favorite poets, and since I noticed we share a love for some poets and musicians (Joni, for instance) I thought you might appreciate a depressing poem in response to your blue mood, which, by the time you read this comment, will surely have passed.
Rock on, woman, and please keep doing what you do so well. You give so much to your readers (I can only imagine how lucky your friends feel to know you in person) please don't be afraid of what we might think if we found out you are not superhuman. You're pretty cool as you are.
Elizabeth
I love hearing your thoughts.
EH
Carla,
I can't speak for others but I would wager that most people writing to you wouldn't mind self-pity on your part. If only collectively we could give you back your lovely body, your runs followed by falls to the grass with your son, and the ability to open your coin purse,faith would be restored in the universe.
Major Hugs of Love, Teresa
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