CLAUDE DEBUSSY

Friday night I bike to Carnegie Hall.
I want to to listen to the classical pianist Katya Grineva.
I want to experience LIFE LOVE TRUTH.

I sit in the highest balcony for $25.
Section DC1, row/box FF, seat 112.
I notice that the audience is mostly Russian. They are there to support their Russian daughter.

The balcony I sit in is for the noisy types.
Phones go off. Cameras flash.
The ushers (in red costumes) are finger pointing ill-mannered policemen.
They lost patience with us before we arrived.
They know our type. The type that sits in the highest balcony.

I sit (alone) stuffed into my seat.

The pianist enters wearing a beautiful black gown. She has piled up blond hair and lovely arms.
She could be from any era.

After each piece she bows just so, (like a princess).

I listen. Steering my oddball physical complaints toward the perfection of the music.

The pianist is stunning. She is as masterful as any athlete or famous intellectual.
We should all be artists (I think to myself) , masters of our talents.
To share with the world a language that can't be spoken. A language with no words.
To recognize it, we all have to be there for each other, smiling. or grimacing,, sharing in something that we recognize, but words can't describe.

The music is complicated and intricate. It always hits emotionally but sometimes it's confident anti-melody challenges me and I loose my place.

It's troubling to me sometimes.

But it can soar.

At one point during Debussy's "Clair de Lune" the corners of my mouth go up and my head rolls like I am getting a sorely needed back massage.



The concert ends with two encores, the last one by Chopin. Her hands are everywhere at once and my ears cannot make sense of the music. It is a triumph.

I bike home. And as I bike down a carnival-like noisy 9th avenue, I stop at a red-light.
Tommy, an actor I have known for 20 years, calls out my name.

"Charlie!"

"Where's your brain cage?"
(he means my bike helmet)

" oh, I have worse problems." I say nonsensically, I say reflexively.

(Sometimes I speak the thing nearest at hand ( a nervous impulse) because my body/mind can't get it together to (listen- understand - and then respond) My reactive answer often expresses a silly crude simple self apparent idea of my general circumstances)

" You'll have even worse problems if you don't wear a helmet." Tommy persists.

But the light has changed to green for me,

and I bike away without responding to him or wrapping up the conversation in any particular way,

...the music of Debussy still in my head.

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cut and paste

http://www.superopera.com/mp3/debussy/r_clair%20de%20lune%27_44.mp3

OUR TOWN

Hi there,

I went up on the High Line yesterday and I thought of you. There is an elevator at 18th Street. It's very unusual, beautiful and strange.

MW

_____________________________________________________________________________________________________________


New York is unrecognizable to me these days. It's cleaner and more genteel than the suburbs. (I often think)

I saw "Our Town" last night.
I had to be one of the townspeople who asks questions about the town.
And I was talking to Kenny Marx who is a friend of mine from NU.
So funny, I wonder if it was odd for him for a second to be staring at someone he knows.

I liked the production, but felt like the writing strained (sometimes) in the super hip acting style.

I liked it though.

I was the Wally Web at Northwestern during Summerfest.
It ran for (I think) a month of so.

And I never saw the whole play because I was off-stage for most of the show.
So much of the play was new to me!

CR

___________________________________________________________________________________________________________


Did they know that you were an actor? is that why you asked the questions or is that a part of the production to ask regular folks to be a part of it? I haven't seen it yet--I've never seen it.

how was your opening? was that this past week?

MW

___________________________________________________________________________________________________________________


They didn't know me. They push the script in front of your face and point to a line in the script. It was Brechtian.

It's only a tiny part of the play.

You might see it, because this production rests solely on the director David Cromer's revisionists? idea of the play.
The version I was in was strictly Currier and Ives. This one is very 2009.

The film festival in Ct. was ambitious but sleepy. But It's always (fun and good) to see bursts of ambition and inspiration.

CR

KING ME

I bike to my dentist's office on Broadway and West 63rd.
I hate my dentist. (Not true) He is a cheat. (His bills are filled with error and confuse me)
I am too lazy to look for a new one.

One of my gum's has drastically receded.
I think that my gums may not like the Rilutek I've been taking twice a day.
I am worried about infection. I am worried about root canal.

So I suck it up and make an emergency appointment.


The dentist's office is in the same building as Ollie's. And a block away from a hopeful happy Pottery Barn store.
The last time I was at the dentist's (two months ago to get my teeth cleaned) I stopped in at the Pottery Barn to stare at the sofa arrangements and glumly peruse their sale items; chipped frames, faded Christmas ornaments.

That visit, I shopped along side the actor who plays the NBC page on that Tina Fey show 30 Rock. He was with his comely white bread parents kicking lounger chairs and sofa beds. The threesome looked so conservative and sweet. I was jealous that he had parents that went furniture shopping with him. That he was on a hit show. He is simply himself. That he's playing an NBC page and I WAS an NBC page and when I was an NBC page, I had thought about a show that takes place at 30 Rock.

According to Christian Science or Mind Science, there are no original ideas, man doesn't create anything original, its already there, available to everyone.

I like that view. I believe it too.

On the bike ride to the dentist I rehearse what I will say to the dentist. I'll be very neutral and matter of fact.

Today I will not see my regular dentist, I will see a substitute dentist.

My substitute dentist is pretty, poised, a Mediterranean ingenue. The kind of girl that might still use hair spray and wear pantyhose with white shoes.

Something (Marlo Thomas-That Girl) about her.

I present my dry monologue to here.

She nods to my confession with pretty painted on detachment.

She gets up from her chair and looks up my medication on the web to see for herself if it causes "gum hemorrhaging # 1".

She sits back down to examine me. She feels around my mouth and proclaims with the happy definite solvable solution, that I am the victim of a cracked filling.

That is great news for me. I am perfect. No need to panic. G-d is there for me. My mortal mind brews trouble.

I have a problem with this particular filling. This is the third time in five years I replace it. This new replacement will cost me 1 thousand dollars. (Isn't this the dentist's problem? It's only been in 2 years. I buy a tooth guard to wear at night for $300)

She suggest I get a gold filling. "It will last forever."

This is amusing to me. I'll take the regular one, I say.

We go to work right then and there.
I agree to a shot of pain killer in my gums... and thus begins my period of panic.
Because, my tongue and throat are lazy (I reason inside the dome of my head).

What if my tongue is too lazy to get out of the way?
What if I can't breath?

The dentist lady notices me sitting upright uncomfortably, my eyes dilated. The noise of the dentist office in the overwhelms me, complicates my busy mind.

I can hear Dr. Rajan lecturing my sister, " of course If he'd been responsible he would have read that people with a pending ALS diagnosis should never, ever take Novocaine!!!

I want it all to stop.

NOW!

I tell the dentist that I have no fears of dental work.

This is true.

My grandfather was my dentist. I feel safe at the dentist.
But now I am scared that my body (mouth, throat, tongue) won't behave. I tell the dentist lady that I'm worried I'll swallow my tongue.

The pretty dentist lady leans in, wearing a sympathetic smile (wearing professional makeup- I notice) and reassures me that I will be fine. Nothing will go wrong.

I stare at silent mini TV above my head. A game show! The host is the actor who played Peter Brady.

Los Angeles (where the show must be taped) is a vast uncontrolled land to pick up a paycheck... I think.

Later my substitute dentist comes back to me about my pending diagnosis.

'You must be in the early stages. Does it run in the family?" She asks trying not to display any fear.

I give her a mini version of the history of my illness, the tennis game sprain, the tiresome walking to work, the various doctors, the confusion. The lack of a gold standard for a diagnosis.

She puts the tongue compressor back in my mouth when I am done.

I pause.

And then I make her take it out again.

"of course I pray daily that it will change. There have been cases of it stopping and this is what I plan for me."

"Well, I hope so too" she says unsteadily getting back to my mouth.

I feel like the problem pupil in first grade. The teacher loves all her children, wants to love me, but this vulnerability is too much.

(I would prefer to keep my mouth shut. But feel I gotta spill.)

When I leave, I tell the dentist lady,

"Thank you... and thank you for your kindness."

I am a rattled, dainty, genteel Blanche Dubois.

I ponder for a moment, if by being grateful and respectful to her, she'll see to it that I don't get over billed.

Outside, I get lunch at Ollie's. And since I have forgotten my reading glasses, I can't read the menu. So I pick the random # 31 from the endless menu with pages and pages of tiny print.

True.

Ten minutes later, I receive a spicy hot beef and noodle soup in a big plastic tub. As I eat it, the sauce splatters on my new white tshirt. Little brown dots dribbling down (Pollock style. I will look like a moron for the rest of the day.

So I cross the street to the Gap and buy a new tshirt for $6.
It is a strikingly ugly yellow color. This yellow will never sell. It is SO ugly that I imagine it could be really handsome on me.

In my new shirt, I bike down the block to Barnes and Noble and read the play "Exit the King" in the cafe on the top floor. I borrow glasses that are for sale by the register on the main floor. I leave the hard plastic tag on, sticking up by the nose part. I sit in a table crammed in with dozens of people, like we're all waiting for the same flight. I enjoy the closeness, the company. A child at the next table stares at me and my glasses with the tag sticking up, like I might be a good play date. He steals looks at me with curious admiration. Kids are attracted to me.

Sometimes.

I sit at my table and read the play "Exit the King" by Ionesco because I'm seeing it tonight, at the Ethel Barrymore on West 47th.

I've never seen an Ionesco play.
Geoffrey Rush has won the Tony for best actor! This past Sunday night.
It's a hot ticket.

And...

I want to see an absurd play.
My life feels absurd. Like pickles and ice cream to a pregnant woman, I (in my confused state) have no desire to see or read about facts or linear stories but crave lovely confusion, rendered with humor and elegance. (I hope)

As I read, I discover that...
This play is an exploration of death.

I did not know that.

I hadn't really considered the topic of the play, just the French absurd part.
But there it is, the text lying in front of me with my tall green tea and a super sweet over buttery oatmeal cookie.

The play is a King's reaction to being told he will die "by the end of the play" and his various stages of denial and then his guided tour to his last breath.

The play is fantastical and also very real.

Some of the sections jump out at me.

At the theatre, I sat on the aisle and leaned my head into something wrought iron next to me.
I listened more closely than I usually do, noting comparisons and connections as the play went along.

The king is talking to the last surviving servant in his kingdom.
The servant describes how tedious and laborious her life is.

" I live in a windowless room, I have to walk down dark steps in the early morning before I can even see light".

The king in ecstasy replies,

"You get to wake up in the dark, and then take a step down into the light, discovering the light, each morning?!!!"

He is ravenous for the beauty of ordinary life, painful and gorgeous, that he is about to give up.

The beauty of life. The extraordinary beauty of being alive.

Apparently, Ionesco wrote the play when he was sick and near death, in 1962, the year I was born.

It offers no glimpse of ever lasting life. For an absurdest play, Ionesco writes a modern realistic version of what death might be, a journalist's report of the the final fight, the last thoughts, the walk into the white light.

And then nothing.

As I leave the theater, I walk into Sigourney Weaver. We catch eyes for a second.
Does she know me? Does she recognize my greatness?

I time my medication refill wrong.
I will be without it for 3 or 4 days.
The pharmacist can't give me a short supply because it is too expensive.
He has never dispensed this medication before, he tells me.

I lie in bed and decide that my body will recover.

A short film I made gets into The Woods Hole Film Festival midsummer.
It is a small prestigious film festival in a gloriously beautiful cape cod village.

I am available to the good and bad of the great vast voice.

HEADY

I sit at the Cup Cake Cafe.
Back at the Cup Cake Cafe.
Back in New York.

I've been on a nine day pilgrimage to Southwest Florida to find out how I am.

Turns out...

I am tired.

I sat in the pool, and stared in the near distance, creasing my brow, solemn and still, like a melancholy wax figure at Madam Tussaud's.


But, my return to New York feels good. The island feels leafy and young.
And since the weather is nice, I continue my Florida vacation in midtown.

As I sit at the Cup Cake with my paper-cup of coffee, I scan my body.
My left ear is clogged. My hearing goes (in and out ) like a shot speaker.

This is from swimming.

I feel flu-ish. Do I dare admit that conciously.
My legs are numb and hot. And they were dramatically weeker cycling to the Cup Cake.

Uh oh.


At the Cup Cake I read a book called Mental Science by Thomas Troward.
It's an old book. Written a century ago. It's full of proclamations about metaphysics that egg me on.
He actually writes that only intelligent beings get this stuff.

I'm intelligent! I'm game! Let's us do some healing Mr. Troward!

The book dissects the vulnerable fragile flame that is one's essence.

And he describes how mind, spirit, soul effects our physical body.

He breaks down the will! (A lower impatient pushy will vs. a higher loving accepting, inclusive loving instinct.

Troward's road map is heady, leading me down the trippy road to an anxious examination of what "is" is.

After getting freaked out about death and infinite space I concede that I need people and mundane current events to anchor me in a reality or I'll float away into cerebral angst and toxic depression.

(Now I know why endless sunshine and isolation drives people batty in LA)

Troward, like others, declares that we are not our bodies.

There is infinite intelligence and we are all a part of it.
An endless consciousness.
That if we can, if we can tune in with our objective mind and then release to our creative subjective mind, we can follow our own natural higher instinct, an instinct of goodness and love. This path is surely the right one.

We can heal with an idea.

We can ignite an idea in our head. Like the beginning of the universe, a spinning nucleus in our own consciousness created and available through endless mind, through love, through G-d.

Our will, will decide if it will carry out this idea. Always receiving, always perpetual, like a spinning top. New ideas, new ways to experience our truth, our live, our journies.

Ideas inform our body.

It's not a pushy will.

It's easy.

BUT, it takes an awareness and intelligence. Openness.

... following your higher instinct, your truth, your love, your kindness, your gratefulness, your acceptance, your inclusion in this infinite intelligence.

Infinite mind, love, life, truth (is how Mary Baker Eddy describes it)

Truth, is where I get in trouble. (I surmise)

AIRPORT

JOY

What brings you joy?

(I am asked to consider)

RIVER

We drive to a medical office park. Inland. Naples.
My mother at the wheel of the car.

We careen to the medical center, I am relaxed. My defenses down. I have spent the morning in the pool reading my novel.
My Graham Greene novel. It's enjoyably cloudy. The whirl of a lawn mower some where? There are no shadows because there is no sunshine. Outdoor light is indoor light. All is comfortable and cool. Dreamlike.

We drive and drive and drive. Past plenty of housing communities built on man made lakes. Imported potted palm trees line the
road embankments. Utility plants on one and fake tropical communities on the other.
My Mother talks to me about what? About traffic? About how some people don't like to go to the ocean. "They don't like salt and sand, they like water but they don't want to get sandy." she explains.
And I sit undefended, assuming that I will control the situation with this Florida TV ready doctor.
I've faxed all of my test results and reconfirmed my appointment with the doctor twice. I have printed directions in hand.

We find the the office park. It is depressing. It is corporate and hidden away from the Florida of sunshine and gulf and malls.
These medical office parks offer... the end of the line.

My mother drops me off, I can't walk very far ... remember?

Inside the building,
I'm nervous. Like I'm going to court. I trip. "You alright buddy?" Yeah, I'm good.
I walk into the wrong facility. A room filled with oxygen tanks? I take the elevator up to the correct office.

This office is well supported by a large smiling white staff.
I fill out paperwork. I am introduced to Joe, a small young man with blond hair and a wedding ring with the edge of a born again christian. He takes me in to be weighed, measured, blood pressure.. It's high.

I am then taken to Dr. Shelmutter's private office in the back. Large rectangular windows look out onto Florida swamp, jungle.
There is toy boat on a shelf.

Joe tells me to chose any of the grey chairs to sit in. There are three. The Doctor obviously gets the larger brown leather chair.

I stare at my iphone. Someone has friended me on face book.

The doctor arrives, smiling white even teeth, short and boyish. Nice looking, a little tired around the eyes but TV ready.

"I guess you must be happy with your name these days"

I have no idea what he is implying.

"I'm sorry, what are you talking about? " i reply bluntly softening it with a half formed smile.

"Draper, Don Draper" Mad Men?

Oh yeah, I think, TV. I don't watch TV. Why? I wonder to myself for a half a moment. I am the type of person who protects his individuality. That's why.

We have a conversation. About?

My history. When it all began.

I start with my falling down playing tennis last April. I'm not sure if this is really the true beginning but it makes a good beginning for my TV MOVIE of the week.

I tell him about feeling depressed and walking two miles to work each day, My feet slapping the pavement. The tripping. The tests, The doctors. All the the tests. I am low energy and slightly detached. I tell my story (I think) with the idea that maybe this guy will offer a whole new spin, a better more positive spin.

He asks questions. I tell him I've made a list of supplements I've been taking.

"Did you bring the actual supplements?"

"No just a list"

He has me walk down the hall.

" I see, it's bilateral"

"yeah, well it's mostly in my right foot." Trying to lessen that whole bilateral thing. The bilateral thing is a key clue which I want to hide, I want it to go away. If it wasn't bilateral, we would be talking about a whole other ball game.

We go back into his office. I take my shirt off. He puts his hands against my back. Watching for things. I do that thing that people do when they are exposed and vulnerable. I disappear from the room. My eyes focus on nothing, My spirt has taken a walk around the building until I can put my shirt back on.

He tells me he needs to dictate a letter right away. His observations? I guess.
I sit back in the gray chair I originated in and look for my list of supplements.

i can hear the doctor vaguely in the next room speaking deliberately into a microphone. It is not a short letter. i can hear bits and pieces, and if I strained of moved, i could probably hear more clearly what he is saying.

I decide to stay where I am, I decide to not to be able to hear the dictation. I chose not to hear.

I wonder about this. What kind of person am I that chooses not to hear. Why do I chose not to hear.
Lately, every choice I make in life, is up for examination.

The doctor comes back. It feels funny. Like, we're in a strange Joe Orton play. Like the doctor went into a closet and did something funny and perverse, but now he is back to resume the conversation.

Ah yes... where were we?

"Well, it seems to ME that you have ALS. I don't know if you know but ALS is diagnosed through a process of elimination. You
have been tested for virtually every possibility and it seems that this is what is left.

The fact that your taking RILUTEK , an extremely serious drug, indicates that that is what your doctors at Columbia think as well.

I tell him, I debate, I try to win back, I try to change his mind, i try to reverse history by saying that the doctor told me that I did not have ALS that this drug was optional, but that if I did get ALS I would be happy for taking the drug.

Dr. Shelmutter is not familiar with my keeping reality at bay.
He pushes on, "look, that drug is a very serious drug, it is not offered lightly."

As the doctor speaks the wall of life close in on me. I feel trapped. Air is heavy. I feel like a gunman is playing eeny miney moe with a crowd of people and stops on me. NO.NO! NOOOOOOOOOOOOOOOO!

Or in a lighter scenario, I am a toddler in kindegarten, stuck inside with the teacher, watching the rest of the kids play outside.
I can't get back outside.

We talk about supplements. "That's whey your here, right?"
He goes out to make a copy of my list.
I jot down some possible questions for him.
If it's not ALS, what could it be?
What about drug case studies?

He returns with a xerox of my list and tells me that he would add a few things and triple my intake of coque ten.

I ask him if New York is a problem.

"I wouldn't stay there. I don't know if you need to stay for the biz. I don't know what your financial situation is but New York is a dirty noisy place. You want to avoid raising your cortisol levels. You need to eat as much organic food as possible."

Our conversation starts to give up the formal back and forth protected doctor patient code of conduct. The extreme and hopelessness of the situations wins over hopeful civil protocol. I become emotional, the doctor I notice looks exhausted.
Like he's dealing with things that his TV ready persona are beyond. His face and demeanor become slack.

I tell him I don't know why I am seeing the best Neurologist In NYC if there is no course of action.

Neurologist are there to diagnose, he tells me.

"Colombia is an excellent facility. My father did graduate work there but they have no interest in untested treatments."

(I have this nervous sense that the doctor is intimidated by New York, by Columbia Presbyterian. More than once he said,
"here you are seeing the best of doctors in New York and you've ended up here in the far reaches of Naples Florida'... a chip on his shoulder. Would he be laughed at in New York for his book, A BETTER BRAIN? Which he gave me free copy of.
"Haven't you read my book?" he asked me disappointed.

The doctor suggests that they are not going to offer me alternative methods at Columbia, They might be only interested in their own case studies. They are only interested in FDA approved drugs.

I tell him that I haven't done a lot of research about the prognosis because it is all so depressing.

Well , he says, I don't mean to sound like an egomaniac. I don't want to sound like I'm trying to impress you, but I have had some success in this area. There are drugs that could possibly help you.
When you go to Columbia Presbyterian next Friday. Bring my letter with you, Ask them, tell them. Not as patient- doctor but as person to person, man to man. Would you doctor take these drugs if you were in my position. If you were in my place?

Call me Monday about this meeting and I'll take your call right away. A priority.

You need to get on this right away, You have lost a lot of mobility, you need to get on this. And I can't promise you anything bit you can hold onto me if you like. He leaves.

His assistant comes in and asks me if I will elect to take three blood tests that the doctor has suggested. A test for metals, antioxidant levels and something else. It's christian JOE and he kneels in front of me with a clipboard like an airline steward taking a cocktail order in business class.

"you live in New YORK?!! We love New York! (like he's talking about an exotic remote south american island) I've been there twice and we need to go back there to really explore it"

I sign some release papers and follow Joe through a maze of rooms and offices and employees.

Dr. Shellmutter has a booming business.

I sit in the blood taking room. and wait for the blood taker. I am an old hand at this now. Doesn't phase me.
I am doomed and emotional in my chair. I watch poople my age and younger walk around with ease and I wonder why you would spend you life inside this medical park when you could be outside or doing or creating or something.
I identify with my barber Max's young boy.

I sit. Spent.

Joni Mitchell's "River" is on the radio.

I wonder if G-d is reaching out to me, trying to comfort me.

It stays pretty green
I'm going to make a lot of money
Then I'm going to quit this crazy scene
I wish I had a river
I could skate away on
I wish I had a river so long
I would teach my feet to fly
Oh I wish I had a river
I could skate away on

WHAT HE SAID

CAMBRIDGE, Mass. —.



Similarly, researchers at the University of British Columbia studied people who had undergone genetic testing to determine their risk for developing the neurodegenerative disorder known as Huntington’s disease. Those who learned that they had a very high likelihood of developing the condition were happier a year after testing than those who did not learn what their risk was.

Why would we prefer to know the worst than to suspect it? Because when we get bad news we weep for a while, and then get busy making the best of it. We change our behavior, we change our attitudes. We raise our consciousness and lower our standards. We find our bootstraps and tug. But we can’t come to terms with circumstances whose terms we don’t yet know. An uncertain future leaves us stranded in an unhappy present with nothing to do but wait.

Our national gloom is real enough, but it isn’t a matter of insufficient funds. It’s a matter of insufficient certainty. Americans have been perfectly happy with far less wealth than most of us have now, and we could quickly become those Americans again — if only we knew we had to.


Daniel Gilbert is professor of psychology at Harvard University and author of “Stumbling on Happiness.” More of his writing and videos of his appearances can be found at his Web site.

SITZBONES

My pleasure...call anytime.
I was going to send you a recap of our talk but I wasn't able to do it yet.
I hope you have been able to incorporate some of what I was talking about--honoring yourself, listening to yourself: thoughts, feelings, sensations, as a caring friend. Taking time to sit, feel your breath, feel your weight in the ground (or the fact that some part of you--your feet, your sitzbones, your thighs, etc...) are touching, connecting with the ground.
Tuning in to the parts of you that feel good, healthy and getting as many details about these parts as you can.
Finding three things each day that you are grateful for.

Ok, that's all for now...

Mattie

FORT MEYERS AIRPORT

When you re-emerge in the receiving airport, everything feels different.

it's not just the weather, it's the people.

At the exit ramp, I watch a Floridia family greet a grandmother and a young man (a nephew or brother?)

The Florida family is relaxed, untethered, wearing uneven tans and cotton cut-offs.
The arriving grandmother (in wheelchair) and cousin (pudgy with facial hair) appear static and grey in comparison.
The Florida family hold their keys and spotty tans like they spent the day at easy jobs and lazy barbecues.
The grandmother and nephew have left cluttered rooms, clipped coupons, and noisy cold.

Their first words?

TANNED WITH CUT-OFFS-"Hellooooo, I guess, your plane was delayed by nearly an hour?"

PUDGY WITH FACIAL HAIR - "That's 'cause we hid bombs in our bags."

The people of southwest Florida carry the sky and sun with their car keys.
The people arriving are defensive about their pending conversion.

LADY BUS DRIVER

Getting to the airport is an emotional hassle. (for me)
Getting to the airport always requires a speedy, anxious, frenzied muscling around,
no matter how much time you set aside to get there.

There are last minute notes to leave, the kitty litter needs changing, the kitchen sink still has food debris in it. Do I have enough cash? I gotta to get to an ATM. Where is the cap to the bottle for my ALS medication?

It's a drizzling morning. I'll get a cab, but on a wet morning all the cabs are taken by weak New Yorkers afraid of the rain.
Outside my high-rise, I lean on the hood of a car to consider my options.

I have an hour and 45 minutes to get to JFK, check in, print out my ticket and begin my tip-toed hike to the Gate.

I see the M42 bus and go for it.

I begin my (underwater jog) toward the bus. The bus driver sees me and patiently waits for me.

The New York Bus system defies the rules that govern the rest of the city; buses take their time and wait for people.
They are cautious and inclusive. They lumber along like they're driving through San Juan.

I stagger up the stairs of the bus and dip may card in. it's rejected (because it's empty?)

The lady bus driver says, "Don't put it back in! Don't worry about it." She stares straight ahead.

(The lady bus driver watched me struggle to the bus on my handicapped hips.
She knows I am not a cheat. I am an invalid. It would be morally impossible to ask me to get off the bus.)

I sit in the closest seat available, put my head in my hands and cry. A movie moment of self pity.

What has happened to me?

I wonder.

What will happen to me?

And there my thought ends. My brain shuts down.
I am off to JFK.

RUB DOWN

Today,
I clean the kitchen.
I get a haircut.
I buy groceries.
I feel better. Hopeful.

When I walk in for my haircut today at West 23rd and 10th,
all four of the barbers smile and nod to me. (recognizing my loyal patronage)

This causes me some consternation. I know I should be glad for their kind respect, but i kind of wonder if it's not proof of my unchanging, static life.

I am loyal because I never make any changes.

I wait almost thirty minutes for Max, the same barber I've had for 10 years.

Max is from Moscow but now he lives in a neighborhood in Brooklyn (or Queens?) in a Russian community. He's tall, boyishly handsome and could easily be a model. Today he sports a flawless tan and his hair is cropped just so.

Afters he wraps a smock around me and we follow the ritual of Max asking my preferences (clippers or scissors, straight or natural back, parted on the right, short on the sides?) I ask Max about his kids. He tells me about their recent trip to Disney World. That's why he is so polished and tan today.

Max speaks with a delicate international accent. It could be French, it could be polish, it could be Hungarian.

"It's very cheap to vacation in Florida in May. After spring break, before the summer crowds. We stayed near Sea World and spent most of the time at a water park, close by. It was sunny and 94 degrees every day and ... it was fine with me."

His in-laws had planned a trip to Mexico but had to cancel at the last minute because of the Swine Flu.

"I think the media created the panic, not the flu, you know?"

I'm tempted to tell Max about my friends in Utah who had their school shut down because of multiple cases of the swine flu, but it would be too much work. To tell, to explain, to articulate. And what exactly do I know or want to say about the Swine flu?
Not much, not anything, really.

As Max describes the rides at Universal Studios, I am supine in his chair. I speak and nod and confirm, but my eyes are shut. Glued shut. Deliciously glued shut. Today I began taking my medication twice a day (before bed and now at noon) the pill creates a reckless drowsiness.

I can hear everything clearly in the barbershop but physically, I am neighborhoods away.

Through my haircut coma I ask Max if his kids liked Disney World.

"Did they behave?"

"My youngest boy broke down and cried on our last day and begged me to move the family to Orlando. Can you imagine me, supporting a family in Florida? S' Ridiculous...

This makes me think about how kids are at the mercy of their parent's actions. The beauty and freshness of Florida must be so enthralling to a nine year old. Why would any rational person want to live in the dirty confusion of New York? It must be so clear and obvious to Max's little boy. it's kind of heartbreaking. (in a way)

Max tells me how proud he was that he could give his kids this trip to Disney World.

"Something that they'll never forget. A memory that might inspire them to try a little harder in school " he tells me.

Somewhere in my sleepy consciousness, I'm jealous of Max's fatherly pride.
Being able to provide something memorable for your children. I want that. Wanted to experience that. But my envy is easily subdued by my own drama, by my own disease TV movie of the week.

As he leans in to trim my eyebrows, I think about Max.

I used to feel superior to Max because he's a recent immigrant and a barber. While I? Me? I'm an old timey American with a glamorous creative career or at least pieces of a glamorous creative career.

But when I see Max today, I don't feel superior at all. I feel like an English immigrant who got here sooner than my Russian barber but now my Russian barber is doing really well and I? well, I am down on my English luck.

We are all just part of the ragtime (or ragtag?) American machinery.

At the end of each haircut, you get a hot scented towel wrapped around your face and a short rubdown on the back of your neck.

I live for this hot towel. It alters my chemistry. I feel like I can actually SEE better after the hot scented towel rubdown.

I give Max his customary $5 dollar tip and think about lunch.

I bike to S'nice in the West Village (Hudson and the 13th?) I order coffee and a cheese, tomato, basil sandwich for $10. I call Christian from the cafe and we discuss his staying at my apartment. No need for him to come over (I offer), I'll leave him a key and notes of instruction taped to the kitchen counter!

This inspires me to bike to my obscenely overpriced grocery store on 42nd Street and buy staples. My kitchen is depressingly vacant. I circle the aisles for an hour and fill my cart like I'm planning a party. Why I can't I always shop like this? (I wonder)

I have $175 worth of groceries delivered. Mostly non-perishables, so that when Christian arrives to my apartment, he'll see that I am a responsible, capable, New Yorker with 2 boxes of baking soda, several jars of salsa, a twelve pack of diet coke and a various kinds of bottled water to finish the effect.

Peddling home, I stop at a fruit stand and buy six apples for $3.

I feel better. Hopeful.

email from utah

I also believe that you could recover from this. I just want you to live up to your "I Would" list when possible and not do stuff that is a random time filler. Also, the disability aspect would surely not be an issue with acting--Habib is used to dealing with non-actors. You can qualify to be disabled enough not to be able to get back and forth from work for a $15 dollar an hour job or to accept acting jobs that require major movement, but the odd voice over job would certainly not discredit you. I would love a lawyer to take that one to the Supreme Court! It would win, and it could be a part of your bookblog/photography/docu-philosophical/drama project. You call it the movie of the week, but it is much deeper and more elevated because of your narrative blog voice! Let me know if you have made contact with Christian and it is all worked out.
Love,
N