Last night I nearly couldn't get in bed.
My right leg is shot. I managed to swing my legs onto the bed by yanking them up with the chord from my emergency help necklace. But they landed on headphones lying randomly at the end of the bed. I slept with my feet on the headphones because I couldn't move the headphones and I cant' move or adjust my legs, anymore.
(And because my disability is so new, my sense of myself hasn't really caught up- like I'm play acting - like I'll wake up to everything being normal).
When I DO wake up in the morning, I feel like hell. I cough and sputter and shake it off- an indecent hangover. I moan (involuntarily). I make coffee.
I spend my days in the wheelchair. The wheelchair is a curse. I can get around with ease now, but my legs get weaker and weaker because of it. My lower back is becoming mush.
Today, like most, I wheelchair to the new pier across from 26th Street on the West Side Highway along the dazzling Hudson River Park - suddenly transformed to a sail boating, pink and green, Eden. Men in flat front shorts (peach) ribbon belts (red) French checkered shirts (blue), topsiders (green), and boyish haircuts (all so dandyish- have they no shame?) Wheeling there with my drastic cranky disability, my days apparently numbered, I stare down the young lovelies, as if I were a jealous ghost -invisible - gone, - still lumbering about the edges of the city. (Where did MY time go- where did MY opportunity go?)
I put my feet up on a long wooden bench that runs the length of the new peninsula.
I bask in cool air from the newly planted greenery and the murky river.
I read about the Beat writers. (Their lives, I suspect, more fabulous than their writing).
"That's not writing, that's typing" said Truman Capote reading "On the Road".
I am envious of their travels, and their artistic support, their sex. I craved that. I wanted to be in a group of creative types that said- "wait- no- you gotta use Charlie, we gotta get Charlie in this".
Suddenly, the iPhone beeps. I pick it up and put down my Beat book.
I hesitate to speak because the wreckage to my voice weighs me down. I expect to hear my vital voice piping out, but at "hello", I struggle with my new withering sound (weak, breathy, high, muddled). This new sound demands a character on his last legs - sad, sweet, ancient, ill. I don't want to hear it, don't want to play that part, but CAR is coming to New York to pick me up to drive me (in a rented handicap van for $100 a day) to Lake George. We picked Lake George arbitrarily. We must talk. I must answer my iPhone.
"I'm going to be late, really late, I'm sorry I always disappoint you."
"Car, I'm sitting outside reading. I couldn't possibly go today. Don't worry about it."
"You sure?"
"Yeah"
"Well, the van is pretty cool. We're going to have stop everywhere to show it off. Get the little remote out - make the ramp shoot in and out - impress random strangers. The only problem with the van, is you have to ride... four feet behind me- like a caged animal. I have to chain you in." Car's voice weakens with laughter at the image and I fall in too. It IS pretty funny.
"Car"
"Yeah"
"You have to get in the right mindset for this trip. I'm not easy. I'm in pretty bad shape. So prepare yourself."
"Don't worry. I'm totally ready..."
Car goes on, but I hang up. I push the off button clumsily. My lousy voice allows for lack of grace with no penalties. I've given up on smooth communication. All the angles of my physical self are battered and I surrender to it. The disease and its silent path, is becoming known to me.
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