Mayra my accomplice is pulling my pants down so I can use the commode when I collapse on top of her. She is holding me up – barely – and she says “Whoa, don’t fall in love with me.” “Too late” I reply. A minute or two later she is trying to get me back in the wheelchair. I do a wild pivot and land kerplunk in the chair with Mayra on top of me. “Don’t fall in love with me” I warn her. “Too late,” she responds.
My legs are shakier and less dependable all the time it seems. The night time commode trips are precarious. Bed to chair in the morning is an adventure as my knees lock and my legs stiffen like boards and I generally fall backwards onto the bed. The day I pitch forward is going to suck. Good thing my knees hyper extend – harder to fall forward I think. My wrists are losing strength as is my right hand. Eating is hard, tiring and messy. The lady at the Thai restaurant automatically brings me a straw now. Soon I’ll be too embarrassed to eat out. Soon I’ll need help eating.
The elevator in my building was out briefly this morning and I connected with that part of me that feels very vulnerable. I don’t usually think that way. I get up and try to walk to a calendar, I offer to meet friends places rather than get a ride all the time. I forget that I’m now a handicapped person.
Okay so here’s the weird part. I’m in a good mood. On the outside it looks grim – not enough money, no man, very handicapped, lousy living situation, no job, my singing career is coming to an end…. But here’s the thing. I have this amazing kid who entertains me and lets me take him clothes shopping, who tells me if there’s a fire he’ll carry me down the stairs and who laughs and says “don’t worry, I’ve got you” when I call for help because I forgot I can’t walk and I walked to (and landed partway in) my closet. “How do you forget something like that?’ he asks me.
And here’s another thing – my parents fly from Canada to see my gig and understands that I can’t hang out with them until the gig is over. My brother calls to tell me it breaks his heart not to be there, my sister in law calls mid chemo misery and we share a loving half hour together. I’d say something about my friends but I’ll sound like a broken record. I am blessed at every turn.
Do I sound full of shit when I say that? I hope not because it’s really true. ALS has torn my heart wide open and there are unimaginable gifts in this disease. If I read this 2 years ago I would have thought I was a self-deluding, kelp eating weirdo but here it is.
This weekend Jupiter an Venus are closer together than they’ve been in modern times. George Bush has pardoned his last turkey. I get to sing tonight in front of a loving audience with the most supportive and talented band imaginable and I found great red shoes. There is a lot to be thankful for.
In Kindergarten, Mac was watching the older kids do a pageant portraying the mythical meal between Pilgrims and Indians (pre-small pox blankets etc) and at the end the narrator said “And to this day there are Native Americans living among us.” And little Mac yelled out angrily “Not very many!” The next day we still celebrated Thanksgiving despite its sketchy origins. We sat down and ate a great turkey dinner and talked about what we were thankful for. That’s life is it not? Good, evil, joy, grief, tears and laughter – give me all of it.
So this Thanksgiving I am thankful for ALS. No bullshit. (But check back in a few months, no doubt I'll change my tune!)
Hope to see you at Yoshis.