The worst days are the days when it hits you in the face that you don’t want this. When a series of events just sucker punches you into the realization that this is really happening. When you say out loud to someone ( and surprise yourself that it just occurred to you now) “I don’t want to die.”
The worst days are when you’re mad at your son for getting upset about stupid little things when you are dealing with something so huge, then you realize that he’s getting upset about stupid little things BECAUSE what you’re dealing with is so huge and it is tearing him apart. You are still mad but all you can do is listen and try to understand. He doesn’t miss anything and that’s a blessing and a curse. You are an expert at stuffing anger and finally you can put that skill to good use.
The worst days are the days that you know are going to come closer and closer together. The worst days are the days that you will fondly reminisce about because even though it was hard and you locked yourself in, you were able to get to the bathroom on your own. The worst days have rays of sunshine – your extremely mature brother sending you a filthy song over the internet, your dad writing a deeply moving blog comment, your former students coming over and laughing a lot, a kiss from a very handsome man and of course homemade guacamole.
The worst days come after the best days and if you squint your eyes tight enough, off in the distance you can see another best day in the distance, gradually looming larger and larger.
Tuesday, August 05, 2008
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you are an inspiration, carla. here is a poem i wrote, with all my love and good wishes. it came from a part of me that meshed with a part of you...
the moon shone in a crescent tonight
and Venus was nearby
a typical change for the moon
i asked the sky for little
and hoped for much
a living glow, just a living glow
and a life that sticks with me like solid peace, a little piece left inside
when it was time to squint, i did
and in the distance saw
another moon, looming larger and larger
and it won't let me go, won't let me go...
I think you have an oddball enough sense of humor to appreciate that while I read this I not only condoled with you but thought, "Shit! I forgot to get guacamole when I was at Trader Joe's tonight!"
I love you I love you I love you
I read this blog, though I don't know you.... I read it as if I don't I may lose connection with something that was bigger than me, wrapped in contradiction and love all at the same time. I took care of a loved one with ALS. It was a train wreck and a parade all at once... it was laughter and sadness and I learned how big of a heart we all share... I shake my head at the unrelenting disease. I will never be the same because once a person heads into that dark tunnel of ALS there is only one way out, but how we slide down the tunnel is up to us. Carla, enjoy the day, laugh, hug and sing...
Your courage continues to astound and move me way past words. I have known you for a long time but never really understood the power you were capable of til now. And you are powerful beyond all else...beyond all illness and pain. That is so profoundly clear to me now.
Been keeping up with you via your blog. I saw you at the corner of University and Shattuck yesterday (8/6) afternoon. You looked beautiful and regal in your chair as you waited for the light to change.
i wish i was there to laugh and hold you on the worst days. i want the best day corner to be waiting for you when you wake up this morning. you were with me on a twilight plaza in a light rain of music, dance, beauty, raindrops and love. you were with me when when i snorted at the sign outside the little church store that said 'millagros, santos, popsicles'. i'll see you soon, and that will be a best day for me.
love love love love
Carla: I met a former student of yours on Monday who had taken your acting class. She spoke highly of your teaching and people skills and said she wanted to follow your blog. Of course, you know I feel the same way because...(your the next best thing to sliced bread).
...So I'm pretty sure I've never met you, though it's possible we passed one another on the path at COM, as I spent 5+ years there... during which time I managed to avoid the Drama and Acting parts of the campus almost entirely, even though I have a strong love of live theater, creativity, exuberant expression... and other things that tend to gather in such places. It's funny, looking back on things in life, wondering about the things we didn't do; it reminds me of one of my favorite quotes:
“Twenty years from now you will be more disappointed by the things you
didn't do than by the ones you did do. So throw off the bowlines. Sail
away from the safe harbor. Catch the trade winds in your sails. Explore.
And when I look back at my own life, 20 years ago, more or less... I see that I have not always done this, I see that I have all too often accepted blinders, marching on a narrow and safe path in the midst of all the chaotic glory that is life, walking past amazing people on the path, and not bothering -- daring! -- to look up and meet their eyes.
I found your interview in the Pacific Sun this past week, which led me to this blog and your amazing story, and I have been moved to tears multiple times in the hour I have spent here reading you, and your many friends, and all this love and exuberance and creativity and energy and love that surrounds you.
Why did I not know you? Why did I not take your freaking class!? God, I would have LOVED that, I would (secretly) love to be drawn out, put on a stage, coached into finding and displaying my Muse, my message, my Voice, and share it out there.
And all of this is timely.... a few weeks ago, I lost a client and friend to Cancer. And too, right after, I spent a week saying goodbye my beloved Cat of 21 years, who finally passed earlier this month. My copy of the Tibetan book of Living and Dying is at my bedside even now, waiting for me to get past chapter one, but I never do. Life and death and dying and living and being at peace with it all, is very much on my mind these days.
We're not acquainted, but I find myself drawn to your life spirit, your clarity, your emotional vulnerability and your honest and transparent writing about all this, and I find myself wanting to run to you, to hug you, to kiss you, to be your lover. I want to dive into your pool, to forget about my taming inhibitions and insecurities and abandon my usual reservations and just LIVE, celebrate, and be, to share with you the joys and the sorrows of your life....
...and then I return to my blinders, my usual walls, doubts, my relatively stiff and unexpressive, reserved social mask of bland acceptability, and I automatically start to write all that off as the fantasies of a romantic spirit trapped in a pragmatic, practical, safe and solid persona -- and I look through the window to the outside like a person watching a movie.
Often we humans have wrestled with one version or another of, "what is the purpose of life." And when I buried my cat 3 weeks ago, I made a short extemporaneous speech to those who accompanied me to the side of the hole that I dug to accommodate her final contribution on this plane.... I said that I believe she had fulfilled everything she had set out to do in her life, had accomplished everything she wanted to -- okay, everything except catching a squirrel, I guess -- and therefore her life had been a success. And it felt very simple, and pure, and true. And I find peace in that. It felt like as good an end as could be hoped for.
Carla, I hope that you have accomplished the things that you have most wanted to accomplish in this life. I'm happy that you have been recording, and writing, and performing, and that you are living living living living until you cannot anymore, and then finding ways to live some more even so. I'm happy that you are spending time in closeness and emotional intimacy with your son. These will not be regrets, but cherished memories and celebrations and completions.
For me, I am trying to integrate all of this -- I have the Randy Pausch speech you mentioned on my computer, all ready to sit and watch next. I have my Mark Twain quote, I am blessed with my health, and am likely at the midpoint of my years at 42. My goal is to shed my blinders more and more, to throw off more bowlines, and to plunge into that pool of life with the vigor and enthusiasm and exuberance that I have so long admired in others. The lesson from all this mortality and all this storytelling and all this insight... speaks back to that elusive question about the meaning and purpose of life, it whispers that the mystical answer to that question is right here in front of me, if I just reach out for it and embrace it. Hey, maybe I'll take an acting class, I don't know. It's not too late.
Thank you, Carla, for giving so much of yourself -- for all of your life, it seems, but especially for continuing to do so now. You teach us all an amazing and important lesson.
Thank you, Carla. I hope to meet you at Anna's in September. I would like to see you, and marvel at your dance and song and wit and courageous strength in all of this. Maybe part of your life spirit will rub off on me, take root and grow in me -- in all of your friends and admirers and co-conspirators. How many people you have touched, guided, contributed to, added to. Such a successful life.
And though the dusk may be gathering, it isn't over yet......!
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