Friday, January 29, 2010

Things to Do

If you feel like you don't want to live one more day, a good thing to do is write down every moment that you don't feel that way. Every moment that feels like there's no place else you want to be, but right here. Somehow, it's grounding to have a list. Now I can't write anything down anymore, but I have an excellent memory and people who will write or type for me. So, here's a brief list:

Last night, I was reading an eBook. Wendy came up with the idea of trying to Barnes and Noble's eReader and Louel installed it for me and Bingo! I can finally read again without getting frustrated with malfunctioning technology or fingers. It feels great to be able to get lost in a story again. At a certain point during the evening, Mayra told me she wanted to show me something. She wrapped me up in a coat and took me outside where I tilted the wheelchair back to see the full moon. The two of us just stared at the moon without talking and I thought, "Here's a moment for the list."

My niece and nephew were visiting and I'e gotten to the point where not only can I not play with them, but I can't read a whole book without getting winded. Jason had to take over and at a certain point, Annabel whispered to her mom, "Can you start at the beginning? Because we can't understand Aunty Carla." I was stunned at the generosity of these sweet little souls, who were too kind to just tell me flat-out, "Hey dude. We can't understand you." They just feigned interest in the book and dutifully turned the pages. Finally we came up with a game in which I would raise my wheelchair to its full height (which makes me almost my former glorious 5'8") while the two kids stood on either side of the wheelchair fiercely waving the feathers that I'd given them, which had come from my parrot, Ronald. They waved the feathers up and down, as though they were efforting enough to actually lift my 250-pound chair. It was a delicious moment.

My old band came over this afternoon and played music for me. Imagine having three world-class musicians come and serenade you. In between, we laughed and joked as we always do. And then David, the drummer, brought out a chart and he sang "I'm an Old Cowhand." I could barely keep myself from bursting into tears of joy and almost did when Jon Evans joined in on harmony. I can't explain to you how happy it made me to be sitting inside the music again, even if I couldn't participate.

I find that the length of time between list-worthy moments is expanding. It's like I came into the whole ALS thing thinking that it was going to be all shits and giggles when, in fact, there are very few shits--and not very pleasant ones at that--and the giggles almost do me in. I think that the harder it gets to make these lists, the more important it is to make them. The harder it is to get out of bed, to get dressed, to face people, the more important it is to do it.

My son had a rough week and Kathy flew down to San Diego to be with him. I had a rough time on Thursday and my core group of friend-helpers--let's just call them, frielpers... or maybe friere-givers or any other name you can come up with--all showed up throughout the course of the day, some for a half-hour, some for 5 minutes, some bringing food, or a little dog, and some just to give me a hug, Other friends keep in touch by e-mail or phone and I feel that the willingness of everyone in my life--well, not everyone--but the willingness of most people in my life to take a little bit of the weight from me makes it possible for me to get up and re-commit to living for another day.

I watched and listened as my musicians played and I watched as Annabel and Atticus created imaginary worlds with "bad feet" who were the nemesis of the wooden train with which they were playing and "good feet" that would come to the rescue. I looked at the chest of drawers in my caregiver room and saw that the crazy bitches had all given themselves spirit animals to identify their belongings rather than just writing their names down. Jenny didn't make one quick enough so Alexa drew a picture of a goldfish for her with the note, "You snooze, you lose. Now your spirit animal is a sad goldfish in a bowl." I mean, who has caregivers who can come up with that kind of crazy shit? Who has caregivers that are fucking firedancers for God's sake? Who has caregivers that bring gifts, both legal and otherwise, to their employer's house on a regular basis? I watch all this in wonder. I get to be in the center of all this love and creativity.

It's so hard to reconcile the abundance in my life with the equally abundant loss. It's so hard to keep going and yet impossible to imagine missing all this beauty, all these miracles, I am starting to lose something that may be the hardest loss yet. I'm starting to lose the ability to see ALS as a blessing, which has taught me so much and brought me so much. If I lose that ability, I don't know what I'll do. I wish I believed in ghosts because if I were a ghost, I would haunt all of you in a friendly Casper sort of way. I mean, I have enough unresolved issues that are complicated enough that Haley Joel Osmond couldn't figure it out and set me free from my ghost-ness. Fuck you, Bruce Willis. What do you know about suffering? If I were a ghost, I could just stay here forever and sit behind you when you played cards, whispering, "Do you really want to give up that Jack?" or stand next to you at an audition and tell you, "You've as good as gotten this gig already. You're totally gonna nail this." Or I would wrap my arms around you like my sister-in-love did on her visit and whisper, "Oh baby, oh baby, oh baby" until you felt better.

But I don't believe in ghosts or Heaven and mercifully, I don't believe in Hell either, since it would be utterly redundant. I believe in right now. And I need everyone's help to remind me of what needs to go on that list every week.


Anonymous said...

the fact you are so gifted at describing moments and can bring them to life for your readers and the fact that because of your ability to do this regularly we are all paying attention just a little bit more to every moment we each have is something that must go on that list

Anonymous said...

YOU are on the top of that list
your strength
fucking amazing sense of humor
ability to express exquisitely
righeousness understanding of reality

YOU are the top...

Anonymous said...


Anonymous said...

Thank you Carla. Your perspective helps. (This may sound weird, but whenever I see a handicapped restroom I think of you and the blog you wrote about not wanting people to use it who don't need it. Haven't used a handicapped stall since.)

Anonymous said...

Carla you are so beautiful and loveable in your honesty. And even though you are afraid of losing your ability to see ALS as a blessing, I say put your ability to say FUCK YOU ALS on that list!

tracy said...

thank you.
you are profound. what a gift.
thank you.

Hugo said...

Awesome. Thanks Carla. I'd love to see you soon. Can I bring over the album I recorded with my gf and bro and friend? I'd love to have you listen---you gave me my first voice lesson remember?

Right now I'm working at a french bistro that's keeping me busy---and I sing happy birthday in french to whoever informs me it is so. Its fun but kind of queer.

Anyway---keep channeling that spirit and focusing your mind on all the love surrounding you, which I know is alot.

Anonymous said...

Ditto about the restroom. It really impacted me. In fact, I told someone who was about to use it that she shouldn't. I told her about your blog and she listened closely. And she waited for a regular stall. It sounds like a little thing but it is in fact a HUGE thing because it never would have happened, you never would have raised my consciousness if you had not written that blog on that day. So my god what an impact you are making on so many people. You. You are at the top of this list. Of every list. We LOVE you.

Anonymous said...

Dearest Carla,

Your words are beautiful, sublime and always a mighty powerful jolt.

I don't know how to describe how much your writing makes the heart stretch and widen.

I love you dear one,


Anonymous said...

And here is yet another person who is a lot more conscious about handicapped stalls.

Your blog has been a blessing to me since I was introduced to it by the Chronicle article. May you travel well.

Anonymous said...

That moon was awesome wasn't it?


Greta Koenigin said...

Maclen, Maclen, Maclen.

A-friendants or Frimps.

Making fun of things.

Making fun of people.


Sunshine and the sounds of birds.

Those musicians. Can they come back once a week?

Hiring strippers for baby showers.

Writing plays. One more, please? A one-act? Ten minutes even… (All proceeds from performance rights go to ALS research. Just like V-day. How ‘bout an ALS Vagina monologue? Seriously.)

The Ocean.


From Thornton W: Clocks ticking.



Drugs that help you feel more comfortable.




Jessica Shirley-Donnelly said...

YOU go on that list, for every single person that loves you. My dad has ALS and for every single rough, frustrating, unfair, impossible-seeming moment, I know there is a good, laughter-filled, amazing moment waiting around the corner to make it all worth while. I would seriously go through the hardest parts of this forever if it meant I could have him in my life for that much longer, and I bet that your family feels the same way. Thank you for writing about this in the amazing, humorous, sensitive, and insightful way that you do. You are an inspiration.

Cathalynn Labonte-Smith said...

Damn, you're a good writer. Your blog would make a great book. I mean if "Julie and Julia" a pseudo-nonfiction book derived from a blog can be a bestseller, your blog can too. You can even self-publish to Kindle--I put up a couple of my childrens' chapter books last week and it was super easy. Not that you need more projects--ha ha.


Anonymous said...

the fact that you are a guide, a leader, who has taken off across country on this onerous trek, pointing out and explaining the sights along the way to those of us less travelled. That you give of yourself, even when it's not the easiest, nicest thing to do. The number of people who have flocked to your side/site, to gain from your knowledge, and roll around in your humor. Thanks for helping me to remember the important things in life. ~peace be yours, Betts

LeAnne Rumbel said...

Carla, thank you so fucking much for this incredible blog. I am here, cheering you on, as you are cheering my life on. I've met you, as we travel in some of the same Marin circles. I was too shy to come up to you, when I quietly met you at the College of Marin and once at the Ross Valley Players, but I want you to know, that I am here for you. You are a warrior with a message to share and that is, wake up, enjoy your life and get on with it. This world holds no promises except that we are responsible for owning our journey, and making it the very best it can be.