I spend the day going through every drawer and box in my apartment with my health aide, Mary.
We can't find it. I need a new passport.
I google "passport, photos, New York City" and choose a passport photographer near Central park. I make an appointment for "Access a Ride" (the taxi-van for the elderly and disabled). The van picks me up at four.
We get caught in mind blowing traffic crossing Central Park South.
I sit chained into my seat. The air in the "Access a Ride" van is frigid.
Through the van window, gorgeous New Yorkers roam the edge of the leafy Park, healthy people with sunny futures who have no clue of their sumptuous freedom, their priceless health. I stare. I glower. And then I numb. I try to forget I exist, as if by denying my own existence, the disease (my doom) will fail to exist with it.
I turn my focus inside the van.
I share it with a young (seemingly) able-bodied woman. She is quite fat and and coddles her cellphone, sometimes murmuring into it. I fondle and gape at my phone too (I notice). The two of us are like toddlers with popsicles.
(I feel weird using this van for my own little needs, burning gas, clogging streets, wasting tax money. The only reason I deserve such kindness, I figure, is I am dying and the city is trying to make it up to me (somehow). Now that I can no longer fight, the city has regrets.
My ride ends on the weird upper east side. This part of the city is noisy and colorless, a cousin to midtown. There are lots of shoe stores, and bank after bank after bank. There is a line around the block for a new "Shake Shack".
We pull up to the sidewalk and the driver, unleashes me. The ingenious little elevator is sprung to action. I wheel onto the metal stage and am lowered onto the pavement of east 86th street near Lex. People passing stare but don't pause. I wheel, alone and corageous, to the photo store.
The store has a raised ledge at the entrance. The ledge is too high for my wheelchair. I consider giving up, I'm ready to, (defeat comes easily to me) but I give it one bumpy awkward thrust... and I’m in.
I'm met by an attractive indolent French sales-woman. She leads me to a corner of the store and then beomes quietly annoyed when she discovers she can't use the preset backdrop and stool, because I can't get up out of my wheelchair.
The French woman jerry-rigs a poster board to the back of the wheelchair. She’s roboticly patient but you can tell she’s irked.
We get the shot.
I smile and thank her from my wheelchair but she's still tight-lipped so I win her over by offering cash for the overpriced photos ($36 for four). She seems happier now. She hands me the pictures. "Not bad. Want to take a look?"
I look surprisingly healthy, except for my smile which is lopsided where muscles have atrophied. A visible scarlet letter. One eye looks vacant. It shocks me.
As I pay I notice a display with rolls of kodak film behind the counter.
"Do people still buy film?" I ask, still in her good graces.
This is the kind of random thing I love to ask, and I guess I'm hoping I'll get some kind jaw dropping answer like, "they've stopped making film and this is the last of it! It's very valuable!" or "Film is making a huge comeback! Don't throw away your old SLR cameras!"
But what the French woman offers is mundane and boring so I barely listen. Something about "some buy film, others don't, it depends" etc.
She hands me my photos in a navy blue card that looks just like a passport and runs over to hold the shop-door open like she’s shueing me out.
"Thank you!"
“Merci” I say and I thur-UMP! - over the threshold - and am once again out on noisy 86th street.
I look down the street and see Central park. I decide to go to the Park but worry if my wheel chair battery can sustain the trip. I am viable as long as my batteries are and then it's 911 for me.
As soon as I get inside the leafiness, I notice the weather is perfect. It's the kind of air you would choose for the eternal hereafter. The gentle breeze caresses and cleanses. It's brisk and wholesome like in a State Park.
I wheel along the loop to Cleopatra's Needle (an ancient obelisk) donated to the park from Egypt (in 1886?)
It's very tall and very old, a gazillion years before Christ.
I put my feet up on a bench that faces the obelsik. From where I sit, I can see runners and cyclists below on the loop. They seem so hard on themselves, so striving, to not fall behind, (so self punishing for not owning a floor-through apartment in one of the elegant townhouses they pass).
I pull out my book when a cyclyst rides by me. He dismounts his bike, points to the monument and says,
"That's the oldest thing in New York City. Egypt gave it the United States to win trade relations. There's a twin in London."
I hear a New York accent and I see a thirty-ish man with a short regular body, and a plain unwatched face. He skips introductions and starts talking at me, an ernest panapoly of fact-isms.
"It's from a couple of thousand of years before Christ. Took two hundred horses to drag it here from the Hudson..."
I barely respond, because frankly it’s hard to understand me, my speech is muddled. But it doesn't seem to bother him so I decide to let down my barriers (too high anyway) and listen to him talk about religion, the economy, and the how nano- technology will change the world - "just like the combustible steam engine did".
My park bench friend, I find out, is an out of work real estate broker,
"rentals and retail mostly, notice how many storefronts are boarded up? The banks aren't lending out money... we haven't seen the true fall out yet because it's all been papered over."
And later he tells me, when we get to what's wrong with the world,
"The money system is what has destroyed the planet. There is plenty for everyone but the money system creates the illusion of scarcity. You DO know that the government pays farmers not to grow potatoes. There should be plenty for everyone. We should all be living full lives, contributing to society. People working in Duane Reede are wasting their lives, they should be studying, thinking, traveling, creating. Robots should do all of those jobs. People are afraid of robots but they shouldn't be. "
I'm impressed with with my park-bench friend's ability to elucidate.
He DOES, however, seem a little on the "spectrum".
I use the word "spectrum" because of my friend Car. Car’s son has Asperger’s. When Car refers to the spectrum, she's means the Autism spectrum. According to Car, all us are on the spectrum, each to a different degree.
But even if my park-bench friend is on the "spectrum", I'm still jealous. If I sat down and talked a blue streak to a stranger on a park bench, I wouldn't have anything to say. I'd have to talk about entertainment gossip.
But I stay on topic and try to add a point about the world economy by using my "Paperback Swap Book Club" as an example. This is a website where you can swap books for free, rendering the value of all books only worth the price of postage. The internet is playing witht the value of things.
This not exactly where my friend was going but still, he's encouraged and we move onto other topics.
"Soon, everyone in the world will carry around the entire world's knowledge on their own personal laptop."
"We will develop a universal language that will leave little room for interpretation. English is too flexible."
"Last year all fifty states had snow but the humidity this summer is the worst it has been in years. And while we are suffering in the heat, South America is having an unusually bitter winter. You eat cereal? Russia is having a terrible time growing wheat! Every day, there are long and skinny dust storms stretching from the North to the South Pole on the surface of the moon."
I ask him how he knows all this stuff and he tells me he reads a lot of it on the web.
"When I was a kid it was encyclopedias."
And then he asks me if I hurt my back.
I tell him I am sick.
Unfazed, he asks with what.
I mumble I have motor neuron disease.
(I can't bring myself to say ALS. When I say ALS, I feel like I invite a dialog of sadness and apology).
I tell him my body is breaking down. Last summer, I was riding a bike, this summer I can't walk. This summer, I have trouble talking and eating.
He doesn't flinch.
"You need to invest in your mind. I bet you've been doing a lot of deep thinking. Most people are wasting their lives thinking about trivial things. Keep your spirits up. Explore the mind. I bet you take a lot of medicine."
"There is no medicine for this disease."
"Oh."
And then he smiles, happy to relate some information he has never spoken of before,
"Have you heard about Tong Ren?! Really amazing guy who works with one of those little dolls and pins, you know what I mean, to heal people. He has a website. Does it all over the internet. I mean, since there is no medicine, what have you got to lose? Right? Do you have a pen? Write this down."
I dutifully find a pen (too easily -like the whole thing was staged) and I write down " Tong Ren" and then I try to talk to him about Christian Science.
I say "Christian Scientists believe that G-d and Christ are the true source of healing..."
And it occurs to me as I talk that I'm really only bringing it up as a talking point. I have no faith. I am simply making friendly chatter.
“Mary Baker Eddy teaches that illness is human error. We are all born children of G-d whole and perfect. As children of G-d, it is our right...”
As I talk, my inner-mind makes quiet judgements about my final departure. I know humanity is just a blip in the earth’s long history but where does that leave me? My time is an insignificant blip in a blip. And what about the times I have lived in? The present time always seems the most relevant, but who knows. I look at the column and think about the Egyptians who created it. Normally, when I look at ancient relics and consider ancient cultures, I feel a little sorry for them - I feel a little superior to them, because I'm alive, I'm alive in modern times, and you people from long ago, are clearly dead, and even when you were alive you didn't really have a clue. But as I talk to my park-bench friend, I feel less and less smug.
I begin to see my own existence, a world with modern disease (a culture of staring into TV and computer screens) is certainly NOT superior to the ancient Egyptians, who who memorized the stars in the sky.
I begin to see my own existence, a world with modern disease (a culture of staring into TV and computer screens) is certainly NOT superior to the ancient Egyptians, who who memorized the stars in the sky.
I finish up.
“When you think you're sick, it’s simply an illusion. Human error. See?”
My park bench friend nods uncertainly. There is a lull.
It's clear I need to wind this down.
It's clear I need to wind this down.
So I switch topics and tell my friend that I'm looking forward to the weekend!
I plan on seeing the Picasso at the Met. The Met is open until nine on Friday, I tell him.
I plan on seeing the Picasso at the Met. The Met is open until nine on Friday, I tell him.
My friend looks disappointed and tells me he has to prepare for a small role in a film. He’s playing some sort of science fiction messenger, a futuristic Hermes. He has to wear all one color (or avoid certain colors) because the film is being shot in blue screen. His scene is being shot on Saturday morning. He regrets he'll miss the exhibit.
(I worry he thinks we're friends now, friends in a "I'll call you and we'll make plans" kind of way).
My terrible disease forces intimacy.
But he abruptly looks at his watch, notices the time, and bicylces away.
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