Last night my friend’s daughter showed me a butterfly. It had landed on her finger and she and her mom had managed to get it into a shoebox. I peeked into the box and saw this beautiful black and yellow butterfly. Its’ colors were this vivid contrast against the scarf which had been lovingly laid in the box. My voice feels like that butterfly. I did a concert last night and with great effort I can still make it beautiful enough to please the audience but like that butterfly it longs to soar and it can’t. Nothing about this disease is more challenging than the way it has clipped my performing wings. And yet if you could see the intensity and passion of this beautiful little girl as she told how the butterfly came to her. How she watched eagerly for our reactions as we peeked into the box, you would see a fierce beauty in the capture of that butterfly. There is a beauty in this slow, slow dying of everything I thought was me and yet I am still here. It got me giddy on the gig, making stupid jokes and cracking up mid song a couple of times – I think it was giddiness from being able to rise above this huge sadness of knowing there are only a few gigs left.
Friday was my first lithium study check-in. I wish I could say I notice an improvement but the last few days have been nearly impossible. My legs, lower arms and hands shake vigorously, walking is more like careening and it’s hard to operate the scooter because of how weak the thumbs are.
I was hoping I had just pushed it too hard on Sunday when I attempted boogie boarding again. The day was initiated by Jonathan – a very nice person and wonderful playwright – who brought along his friend Ingrid and her friend D’Alary ( great name, huh?) who were joined by patron saint of fun, Lisa. They got me into a wet suit, got me onto a board and pushed it around in the water. The hardest part was going out against the big waves and being pounded by them – harder still for all of them to keep me on the board. The wet suit made the water wonderfully tolerable and it did feel lovely to be out there. Didn’t catch any real waves but I know months from now I’ll look back enviously on the time I could do just that. At one point Ingrid had everyone shift the board around so I could see the view. It looked like an oil painting. I cried as they carried me back to shore because it was all so beautiful.
I thought to myself that if my legs and hands didn’t recover it was probably worth it. My doctor, however thinks these new developments have been creeping up and I just noticed it. The good news about that is I can keep doing things like trying to boogie board. The bad news is that this trouble walking and using my hands is probably not temporary. The other bad news was that while I did well on the vital lung capacity test, I didn’t do well at all on the other breathing test, which indicates what I already knew from my trouble singing. My diaphragm is weakening. At my next visit we’ll discuss measuring me for my permanent wheelchair and nighttime breathing machine. Boo! They also tried to get me to leave with a walker ( more stable than the cane) but I couldn’t do it. I think I’d rather crawl.
I got the gift of the century the other day. Maclen told me I had shown him by the way I’m dealing with this how to deal with a tragedy. We had a long real talk about how it’s okay to have fun, happy days in the midst of a horrible situation, that you don’t have to worry about experiencing the grief – it will blindside you when you least expect it.
That’s how it is. Thursday night was the Bay Area Theater Sports benefit. It was wall to wall laughs. They raised over 1200 and I had a ball. So many amazing people helped out but particularly Laura Derry the instigator and Rebecca Stockley. Patron Saint of Fun Lisa helped out as well as a host of amazing improvisers including my colleague Paul Killam who made me pee almost with this game in which he and another improvisor walk blindfolded through a stage of mousetraps while doing a scene. Hysterical. The only time I had trouble was when I remembered at the end why we were all there. The tears came and went quickly. It was a good day.
Several months ago I told my engineer/producer/bass player that I didn’t know if I wanted to live if I couldn’t sing. I was over-reacting. I see the end of singing coming and I will deal. I will absolutely live. I still have this blog, the people I love and the memory of a beautiful little girl who is still young enough to get what a miracle it is to have a butterfly land on your finger.