Wednesday, November 25, 2009

Thanksgiving Thoughts

Looking at a picture of Mac from Friday night's sneak peek and noticing that he can still smile until his eyes twinkle despite everything he has been through.

Having had my Dad three blocks away these past three months.

Knowing that I'll be spending Thanksgiving with a bunch of my caregivers and family. Knowing that is what I want to be doing on Thanksgiving.

Fire dancing.


The Forbes Norris ALS Clinic. Not because they are going to save my ass, because they won't, but because they are all great at their jobs and wonderful, funny and compassionate human beings.

The faculty and staff at The College of Marin who have not forgotten a colleague and continue to help.

The documentary sneak peek at The College of Marin.

Ronald cooing " I lo-ove you - I'm gonna kiiiiilll you" and then counting to 4.

I'm grateful for the students who have made me laugh for 16 years, who show up a dozen years after having a class with me to let me know they haven't forgotten me and for continuing to be in my life. For making me proud.

I'm grateful that one of my students became my caregiver and is traveling back here all the way from New York for Thanksgiving.

My friends. Always my friends. I'm grateful for them when I wake up in the morning and when I go to bed at night because they could have bailed, but instead they have chosen to take on this painful journey. Lots of people have not been able to hack it but many of my girlfriends show up every week. Thinking about ways to help me occupies time when they aren't with me. I don't even want to think about how much money they have spent on me. Its amazing to know that you can send out an email or make a phone call and whatever you need will be taken care of by the end of the day. About a month ago I sent an email to my brother and to several of my close friends saying that I was having a hard time and I didn't know if I could keep going without losing it. It was about 9 or 9:30am. The first one through the door was Edith at around 11. Kathy, Wendy and Kris showed up shortly after. Kaila came by at 12:30. While they were all there my brother called. Let me emphasize I had not asked anyone to call or come over. It's nothing short of miraculous to me to have people just show up.

My friends. I have friends I don't get to see as much because of their work schedules, young kids, etc. I'm grateful for their phone calls and their emails with youtube links and interesting forwards (well not the forwards that make you send them on to ten strong beautiful women you know and not emails of adorable kittens or puppies in the body of the email. I must admit - even if somebody had sent me a chain email saying "Please send this to 10 of your best friends or you will get ALS" I'm pretty sure I wouldn't have forwarded the email...wait a minute, maybe that's what happened.) Anyway, I'm grateful to those friends for showing up in the way that they can.

Pricks I'm not in relationships with. I'm grateful to all the pricks out there who are not currently in a relationship with me. Thank you from the bottom of my heart for not being my prick boyfriend that I should dump but I don't. I'm not grateful to all the really great guys who are not my boyfriend, unless they are somebody else's boyfriend. Awkward!

Psychos who are no longer my caregiver. Thanks for that.

I'm grateful to my new friends who have ALS. Because I hate acronyms, I won't call you my PALS , but I will pal around with you and even get a tattoo with you. Yes, I'm talking to you Gimp Girl.



I'm grateful that Mac calls me pretty much every day and tells me things I don't understand about politics. I'm grateful for his heavy breathing as he talks on speaker phone while riding his bike across the campus, for the loud music rattling through the cafeteria and distorting his voice and for the interruptions as he orders fettucini or greets roommates, because all of those background noises help me picture what his world looks like now. I am particularly grateful that he is away at school. It would have been great to have him around but its sweeter to know he is thriving and happy and creating a future for himself.

I'm grateful for all the friends and family from out of town who make the time to come and see me. I'm grateful for the extremely magical time with Stephanie who sat through a visit which included me being sick from a medication, exhausted from stress, having the most toxic and volatile parting with a caregiver since James Caan and Kathy Bates in Misery, a sneak peek of the movie where she had to share me with 500 other people and a subsequent day of me being barely able to lift my head from fatigue, nausea and dizziness. The weird part about the visit is that we both had a great time with each other. Not so surprising for me since it's a low bar these days, but for her to have had a good time in those circumstances gives you some idea of what kind of person she is. No, not masochistic, just really good.

I'm grateful for all the young people in my life from Mac and his friends to former students to my unique group of caregivers who run the gamut from artist to dancer to connoisseur of all things weed related to gun toting tattooed sweetie pies.

Unless this Jesus guy is everything he's cracked up to be and his supporters haven't given up praying to him on my behalf then this is my last Thanksgiving. Would you believe that this is the one I'm most grateful for? See that's the trick about gratitude. It doesn't count if you are only grateful on the good days. It's a cumulative thing and it spreads and it grows and it's a fuck of a lot better to be grateful when everything is shitty than to be thinking about how shitty it is.

Everything gets harder, every day more challenging but loving this life and the people it has brought to me paradoxically gets easier and easier. If I had a time machine I would go back to when I was a teenager and I would whisper in my own ear all the things I've learned in my almost two years with ALS and you know what... I probably wouldn't listen to me. Some things you need to learn your own self.

And it's all worth it. And it's a privilege to be here.

Message to god (If that's your name): Yo G! We cool.


Anonymous said...

Your heart, your words, your life is so huge, GI-NORMOUS! Your gratitude is a reflection of a most beautiful spirit. Want to wish you an exquisite Thanksgiving Day. I am so with you about the pricky boyfriends, that's on my gratitude list also. Cheers!

Anonymous said...

And aren't we all grateful to Carla for life, joy, fun, and wisdom.


Some Other Guy said...

Carla, my sister turned me onto your blog and though I don't read it all the time, it's always inspiring. I wish you peace and comfort and love.
Best wishes for a Happy Thanksgiving and beyond!

Anonymous said...

I wish I knew what to say...I've written many things so many times and they all seem so trite, I've erased them. I guess I'll just say, thank you. I love you, Carla. Anyone who has known you does...unless they are absolute shit-for-brains. Oh, and I am sorry I could not make the screening at C.O.M. I'll take any chance I can get to hug a hot red-head (and I'm not even into women!).
Perhaps this is the best way to sum it up (a.k.a.: and now for a really pathetic attempt to make YOU laugh)...You make me laugh, you make my're better than "Cats"! (Hey, I'm not afraid to admit it...I actually loved Cats!)
From someone who was in your first play at the College (and who has never forgotten the necklace you let me wear in "Hair").

paulina said...

i am so fucking happy you are writing again!!! i was worried about you and i hated that you were sick-but i can hear you say- i'm always sick with als-it's just degrees.... i love your movie, i love your son, i loved seeing some of the old com gang-even jim dunn who told me i coudn't audition worth crap! (i guess primus didn't know that cuz they made a music video with me)- i wish i could see you more miss beautiful carla. enjoy your becky massages. i am thankful for you in my life. as for the g-word...where do you think g spot came from???

tracy said...

we've never met, we share a friend, and i suspect we've been at a cast party what? so i feel like i kinda know you due to our common theater work.
i was deeply moved last friday night at the sneak peek and seeing you there with your vibrant funny irreverent self, i was just rendered speechless and kinda couldn't leave the theater even though i had to go relieve the childcarers.
anyway. i know if we'd actually met at that cast party we'd have been fast friends, as we share a lot beyond the theater.
you have changed how i look at life. you have inspired me with your very presence and 'real-ness' (did you ever see that movie about african american drag in the '80's? can't remember the name of it but they coined the 'realness' and 'coolness' categories)
thank you from the bottom of my heart for who you are and continue to be.

Anonymous said...

I'm thankful you must be feeling better or you wouldn't have written such a long post. I'm thankful you were able to experience the film with a live audience of over 500 family and friends -- and if they weren't friends before, I'm sure they feel like they are now.

I'm thankful everyone at COM from all areas and all persuasions pulled together to support the screening in so many ways -- and we both know that's really saying something :-)!

I'm thankful you were up to taking on an amazing 40-minute Q&A and of course carried it off with your unique brand of humor, wit and charm. I'm thankful to have seen and heard the remarkable Maclen Zilber! I'm thankful I'll always have the vision of you and Mac on that stage - glowing, radiant, beautiful.

I'm thankful Matt is driving up from Camp Pendleton as I write this because he probably won't be here next Thanksgiving.

I'm thankful for your blog that has given me so much I can't even put it into words. I'm thankful for the life I have and how you've inspired me to grab hold of it and really live it.

I'm thankful I know you.

With gratitude and love from my heart to yours,


Anonymous said...

Hello Beautiful.

Thanks for always sharing the good and the bad.

Being a big fan of the scandal, I am of course dying to hear the pricks and crazy care-giver stories, but I see you are too evolved (or polite--damn Canadians!) to indulge us.

I am so grateful that I have had the pleasure to know you, and not a little bit remorseful that I didn't make better use of our time when I still lived nearby! :(

You are definitely in the top 5 best/coolest/most fantastic people I've ever known.

I love you,

Anonymous said...

and I am so grateful to have you in my life, sis! every fricken moment of it, ugly or beautiful, you give more than I can ever repay. I love you c.
wen xo

Janice Beley said...

Hi Carla,

I left a note on the Leave Them Laughing Facebook page but I wasn't sure if you had seen it or would get to see it. Lisa and I went to the sneak peek here on Monday night at UBC and it was amazing.
When mom was diagnosed, Kathy Duborg gave us this large 11 x 17 collage of family pictures and right in the middle was a cut-out of a saying that said, "It's important to always keep it amusing". It was our mantra through mom's illness and laughter and joy are a necessity to keep you sane and to face those darker days.
Thank you Carla for being who you are and for sharing your story with us all.
You are one of my heros!
Lots of Love
Janice Beley

Unknown said...

hi carla,

wish we could have all shared thanksgiving together. am glad you were spending it with family and caregivers... you've given me so many things to think about being grateful for...especially knowing you..



Anonymous said...

Hey Carla, I have found you by way of my niece Kim, who was announcing the info about the calendar. And then I found your blog. In my spare time I am a Hospice volunteer and have had the amazing opportunity to have several als patients. And have cried my way through Tuesday with Morrie. But I am ALWAYS amazed at the temperment, tenacity, strength and pure bull headedness of the friends I have made with this disease. Now I have found you and know that those traits must truly be symptoms of ALS. I have always come away knowing so much more about humanity...again,it is the same with you. I feel that Life is not so much those things we planned, when we were younger... but the battles thrown in our path. You've got one hell of a boulder in your path, but it seems to only be a stepping stone. I am honored to have "met" you and intend to hang around for the 'trip' and the knowledge I will gain from you. ~peace be yours, betts

Anonymous said... my heart breaks into a million pieces I know the pieces will re-form and will be stronger thanks largely to you. Knowing you, and witnessing your transformation has touched me deeply. And you, being the center of your immense love for Mac, for life, for fun, for friends and family, are bathed in my/our love for you forever and beyond!


Anonymous said...

You changed my life in innumerable ways both small and large throughout the last 18 years. If it were not for you, I would never have had the courage to start up drama at LMC and get on the stage and pursue my writing and take chances on relationships and end relationships that were harmful to me. I am one small person in your life who wished she had the emotional and physcial capacity to have done more but I did what I could when I could and I know you forgive me for my million failings. The joy of knowing you Carla is the deepest form of wealth. And in so many ways your life MATTERED profoundly, movie or no movie, blog or no blog, son or no son. Because the glorious beauty about you is and always will be your struggle to live as fully as any human being I have ever had the privilege of knowing. Thank you for simply being. Being. Now...and forever. Speaking with you like this is a prayer to what is divine and eternal in every one of us slipshod, scary, silly human beings. Love and glorious journeys into the light, Joanna

Carla said...


Just started reading your blog, and wish you and my mom could have met. She would have truly appreciated your outlook on ALS and all that comes with it. She didn't waste a minute feeling self-pity, and was focused on living every moment fully. Thank you for writing!!!

~Carla K.
Boston, MA

Greg M said...

Hi Carla,
my twin sis Carla (the last comment posted) passed along your blog. She said you and our mom were cut from the same cloth, and that I was the Mac for our mom.
I used to fill my physical absence from my mom with webcams views from my many work/pleasure travels (Japan, Germany, Copenhagan, Vegas etc). Even when her words failed her, she was with me. So even if you lose your voice, it's fantastic that Mac offers you those avenues to live through...

I'll keep following as an interested outsider for as long as I can, because your words keep me connected to the thoughts of my mom.

Thanks for what you do!


Yo Frank said...

I am so very grateful for your presence in my life, oh my mentor-extraordinaire!

Without your acceptance of who I am and without being near your burning spirit, I would never have known what I wanted to do with my life. I mean that for REAL, as real as it could be. ( And what a waste it would have been to not know what you are supposed to do with this gift of life. thank you for saving me from that as well)

I know I have not been around as much as I should be, but I do live close to you now, so just e-mail me if you need anything and I would fly there, on my bike most probably, bringing whatever as soon as I can.

Thank you thank you thank you for YOU :)


Anonymous said...

Sweet Girl,

I was whining to someone who is very important to me about a recent diagnosis on my hip and knee. I admit to feeling somewhat sorry for myself and he brought me up straight by saying, "Think of Carla." How true, your unbelievable courage, your wonderful spirit, your ability to share with your Muselings, your ability to look at your illness with humour, your inner beauty that draws so many to you and so many to love you makes me feel ashamed for complaining. I will "think of Carla."

Love, Pat

Anonymous said...

There's not much more to say here except if any dog has Carla's spirit inside, it is this amazing animal.


Maggie said...

Love you Carla, and I am grateful for your blog which has helped me work through the loss of my mom to ALS. All of us are more because of your heartful sharing. Many blessings.


Warren Schiffer said...

I give thanks for the serendipity that brought you into my life. While physically we are far apart, I hold you close to my heart. It was so wonderful to see the photo of a packed house for the screening, as well as read the constant barrage of wonderful comments on your blog. You have tossed the pebble in the pond. The ripples continue to move outward, touching more and more people. You have also raised awareness so that ALS doesn't get to sneak around unchallenged. We fight on. My best to you & Mac.
Co-founder MDA's Wings Over Wall Street

rosebudz said...

Bliss/Grief poem

No one is
right now

(your film made me think of it)

love the calendar, especially January!

may you continue to be a festival
of light to all within your site,