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.