it began with my feet: 5/9/10

Friday, May 14, 2010

THE INNOCENT

The first thing I notice are the booths.

There are vendors handing out give-aways.

This is a cheap lure because the free tubes of sunscreen and waterless hand-wash are attached to booths promoting scary morbid products like respiration machines, throat de-chockers, and food plans. I circle the booths like I'm shopping for appliances. It's weird.

I check in. I get my tag, the very same tag you would get at a film festival. I'm also handed a tote in the shape of a baseball. The baseball theme is always present because of Lou Gherig.

Next to the check in area, are elaborate tables of breakfast foods, coffees, teas and sodas, the sort of enormous food buffet that makes you anxious and grabby. You don't know what to choose, there's so much! And what if it all goes away?

People tap me on the shoulder and introduce themselves. Healthy people (caregivers) with southern accents and solicitous smiles. I'm polite and detached.

I can sense I'm a target for being adorable. I know this sounds conceited but I forget that in a certain light, before I scowl and open my cynical mouth, I'm viewed as an innocent.

I swear I heard someone say as I scooted by ... "ohhhh, he's so cute!"

I scoot to the main room for "roll call".

The main room is huge. There are probably 500 or more seats. The room is set up like a national party convention or a Miss America Pagent. It's divided into states and sometimes into sub-states and cities.
(I'm a part of Greater New York).

I find my seat and am immediately approached by Joan. Joan is sixty-ish and warm and kind. She looks like she might be from the midwest and she might be a part of the red hats.

Joan is here not because she has ALS, or a family member has ALS, she's here because she got to know someone who had ALS. And after they died, she took on ALS as her cause. These people are generous and kind. I'm not sure I would have done that. I knew many people who died of AIDS and cancer. After they died, I tried not to think about it.

It's time to get my mini documentary going.

I pull out my flip camera and ask if she would mind if I film her.
I ask her the four or five questions I thought of on the car trip down.

I can't remember what Joan said (I've got it all on tape) but I do remember what she said before she left.

"Charlie, I have one problem, and it's a serious problem, Charlie."

"What's that?"

"I have to hug people I like and I'm afraid I'm going to have to hug you."

And so it went, all weekend. Healthy people wanting to make up for my bad luck with hugs, free lunches and inane compliments.

Later on in the conference, I talked to caregiver about a person I knew on "Patients Like Me" and finally got to meet in person here at the conference. I told her, in passing, how intelligent and articulate this guy is, to which she offered her own aphorism "Well , all people with ALS are super intelligent!"

GLENGARRY GLEN ROSS

I buy Elliott breakfast at the hotel restaurant.

Elliott has huevos rancheros and I have eggs Benedict.
We read the Washington Post. I drink coffee and forget I'm here for an ALS conference.
There's a review of an Allen Ginsburg exhibit at the National Gallery.
I'm all over it.

Elliott has to drive home, but before he goes, I ask him to go back to my room with me to make sure I can do all the things he was doing for me. Getting in and out of the room seems most important. We come up with an emergency plan if I fall on the floor.

Before he goes, we take a quick ride around the neighborhood. We get a quick lunch at "Ollie's Trolley". I have chicken salad. Elliott orders a burger.

We pass the Christian Science Reading Room. There will be a reader this Tuesday at one. I make a note to make my way back, if I can.

We pass the National Theatre.

The last time I was here, I saw Peter Falk in the national tour of "Glengarry Glen Ross". Whenever I've walked by a theater, in the past, I've felt a pang of angry guilt - there were actors hard at work, I should be hard at work. Today I feel none of that. I've let all of that go.

__________________

We get back to the hotel. I spot a person in a wheel-chair, and then another, and then still another - like the first few snowflakes before the storm. It's time for the conference to begin.

"Shall we head down to the ballroom?" Elliott asks.

But when we get to the elevator bank, I say,

" I think I want to go alone."

Elliott is a good sport. "Okay."

We say goodbye and I feel butterflies as the elevator lowers me down to the conference.

GO GO!

Elliott is on the ball. I am a lose artistic type with a disability.
Elliott thinks ahead. I allow Elliott to take over.

Elliott suggests we ask the porter to bring the scooter to the car.

"No! They're not going to bring it to the car. I'll use my walker. But... go ahead and ask. If you want."

My scooter is at the car in an instant.

It arrives a wrapped gift - a cellophane bag over it. In the basket attached to the handlebars, is an oaktag card with my name on it.

I pull the plastic off and hand it to Ellott. The scooter is toylike. It's maroon. It's called "The Go Go!"

I mount "The Go Go!" and transform (inside). I'm the archetypal misfit mutated to superhero.

I'm Scooter-man.

"Wheeeeeeeeeeeeeee!!!!"

The hotel is perfectly laid out for a scooter (roomy elevators, wide hallways, automatic doors) - actually, so is the entire city.

I don't feel "less" for riding in a scooter. I feel "more". I pass everyone. I'm good with sharp turns.
(Actually) as I ride along, I realize I'm a little annoying on the scooter. I'm too confident, too unapologetic. I can kind of sense it. (I can tell).

___________________

Elliott puts away my clothes, plugs in cameras and computers, and claims a bed. I have a small army of cameras. It's like I'm here to do press, not to attend.

We scoot to Borders. I zip around the store like a nine year old on his first two wheeler.

I forgot my Kindle so I choose a new book. I buy "The Bridge" a well reviewed book about Obama. I'm in Washington and I want to feel a part of it. And I feel like a freshman at his first day of college. I'm buying books! Elliott is my parent. I've diverted myself from the real reason I'm here. I'm enjoying my new dorm room and the surrounding campus.

We scoot to nearby Lafayette Park.

We scoot past a tour of Segways.
Segways are everywhere in DC. It's so cool!

We scoot past the White House.

The White House is white. It's very white. It's pristinely white. Someone suggested (I'm guessing) that if we're going to have a white house, we better make sure it's really white. And it is. Like the healthiest green plant exalts green, the White house extols white.

Across from the White House there's a group of protestors. I read their signs. The signs are addressed to
Barack and Michelle Obama.

"MY HUSBAND COMMITTED ADULTERY WITH MY INFANT SON"

The protestors are a group of women fighting to keep delinquent and sick fathers from obtaining custody of their children.

We circle Lafayette park which is surrounded by beautiful historic townhouses.

I ask Elliott to describe the weather. I'm dogmatic in my creative impulses. It's annoying.

Elliot, however, is accommodating.

"Plain, massive."

Elliott is so creative! But then I figure out he's talking about the White House.

I try again.

"Chilly, breezy, sunny?"

"Come on, you can do better than that."

" Descriptive words are not my forte'."

"Any thing else?"

"It's very pretty" he concludes.

I ask him to walk up the set of stairs to "The White House Historical Association" gift shop.
I can see, from the sidewalk, charming enamel boxes, presidential place mats, and puzzles featuring historic moments. I ask Elliott to "go buy something." I want Elliott to do all the things I would do.

__________________________

By the entrance of the Marriott, I'm approached by a man in his mid sixties. He's blue collar-ish. Full head of grey wispy hair. He smokes a short cigar.

"Are you hear for the ALS conference?"

His voice is raspy from smoking.

"Yeah" I concede, nervously.

"Me too. My name's Michael. Don't need a scooter yet. I was just diagnosed. I have trouble walking. I can only walk for a while before getting tuckered out."

He looks and sounds perfectly normal. I forget that this is the way I appeared one year ago.

___________________________

We have dinner in the hotel restaurant. All of the staff is African American. The service is great. Everyone is nice. The food is delicious. Elliott's stepbrother David joins us and pays for dinner.

David is my age, gay, and works for NASDAQ. He's recently married. He seems kind of sheepish about it. I think it's totally cool.
__________________________

After dinner, David drives us around to view the monuments all lit up at night.
The capital building glows diaphanous from every angle of our tour. It's beautiful.
DC feels so manageable. Living in New York, you get cornered but in DC I rejoice in the open spaces and massive architecture.

Washington is a hub for the world like New York, but unlike New York, it's expansive. There's plenty of room to gather your thoughts.

THE LANGUAGE OF CRANES

Elliott packs up his car with bags and boxes of my cameras, vitamins, and clothing, and drives me to Washington DC for the ALS conference.

Elliott is quiet on the way there.

I ask questions. I have my flip video camera trained on him. This will be part of my documentary.

I ask questions that (really) are unanswerable, like,
"Elliott, you were once very, very sick, and you're okay now. Why do you think you recovered?"

Elliott answers with simple practicality, answers that won't help me probe the mysteries of life.
I'll never win a slot at Sundance with, "well, western medicine was available."

(Elliott later explains, with some small shame, he's not very good at talking and driving).

______________

We drive through that stretch of blight (the toxic industrial mess you invariably pass) which communicates you've left home - you're on a trip! The sulphur smell, terrible and wonderful.

You feel safe in the car, knowing you're just passing through. But the awakening to the dirty, cold infrastructure, shatters your efforts to see your world in some controllable romantic, leafy way.

We pass very tall cranes used to transport resources from one part of the country to the other.