UNDER WATER

The Spring air wafts through the taxi's windows and I think about the paradise that New York will soon become. I wonder if I'll crumble.

My mom and I get out of the cab in front of a nondescript building at east 38th and Second Avenue. We take an elevator to the basement to a (brace and prosthetics) supply company.

The office is windowless, the carpeting foul.

I see chalk white hallways leading to a dozen identical examining rooms. The place looks abandoned except for one bored receptionist. I hear talk radio in the distance. I smell dry erase board - the place stinks of magic marker.

I stink too.

My mother tells me I need I need to bathe. "Honey, you need to bathe, you stink!"

"Mo - ther! I have a fatal disease. Leave it alone!"

The receptionist leads us to a tired examining room. We sit. I notice the ceiling is falling down.

The brace salesman enters. He approaches my eighty year old mother.

"Good afternoon, I just need you to fill out some forms before we begin."

"Whoops! Wrong person. You're looking for me. I'll be filling out the forms."

The salesman seems slightly surprised and hands me the forms.

The salesman looks like an old John Travolta.

He's tall and slim with thick dark hair, sad blue eyes -tired polyester clothes.

He removes my shoes to measure my leg. I'm not wearing socks. I can't get them on anymore. The salesman begins to lecture me on the perils of athlete's foot (and even with my sloppy tired ALS voice) I out talk him, like certain black women do - I over-speak him.

"Yup! I'm well aware of the dangers of Athletes foot. I've had terrible athlete's foot a couple of times in my life. Yes, I should wear socks. But you see, athlete's foot is pretty low on my worry list right now. It's difficult for me to dress as it is and nearly impossible to get socks on my feet and this appointment at one in the afternoon? (believe it or not) this is really early for me. I'm just happy to be here on time. So, think we can move on?"

"Sure... I just had to say something." He half smiles. He got it.

"Yup, and so did I. Let's get me a brace."

I often find myself receiving lectures.

I want to say, GREAT! Come on over, put my socks on for me (or) order that walker with the breaks (or) find me organic cinnamon? Send it on over - here's my address - (or) massage?... hmm.... massage! Hadn't thought of that!!! (or) the Chinese MD who told me that I could possibly live five years because I'm showing such gumption. She grinned at me- like this was good new! And yes, (apartment neighbor) -I know Jesus loves me.

So when a prosthetics salesman begins a lecture on athletes foot, I've got to make an offensive move. I got to cut it off.

__________

We choose the appropriate brace. The (John Travolta look-alike) tells us he'll have to go to a warehouse, a few blocks away, to retrieve it.

While he's gone, I play a game on my iphone and my mother reads an article on her Kindle about Shakespeare's true identity.

She asks me, "Do you think Shakespeare really wrote all those plays? Because this guy, he says that it could have been Christopher Marlowe or even Queen Elizabeth. What do you think? Do you think he could have written all those plays?"

I answer vaguely that I have read something about how Shakespeare didn't own books or educate his daughters... that it could have been someone else, but I'm uncommitted because I'm really focused on my iphone game. I'm really trying to make strides with "Doodle Jump".

The salesman returns, I'm fitted with the leg brace and my mother asks him if he thinks Shakespeare wrote all those plays.

My mother enjoys collapsing the walls of formal discourse with strangers. She speaks with random intimacy to ticket-takers, cab-drivers, receptionists, like they were longtime neighbors or friendly cousins. (It's disarming). And I'm not sure why she does it. Maybe it's to make the big world feel small town.

My mother's question changes the salesman's demeanor and expression.

His voice relaxes and he drops his professional distance.

My mother's tactic (if she has one) works.

The salesman risks some personal information.

He tells us his grandfather was an immigrant from Russia with no real education. His grandfather was brilliant. He could barely read, spoke little English, but he was a genius at creating fake legs and arms. He was the very best in his field.

"I don't think you need an education to create great works of art. Some people, like Shakespeare, or my grandfather say, were born for great things."

I think... how odd, this salesman's life in prosthetics and braces was predestined by his grandfather.

_____________

Somehow the dinginess of the place compels me to speak freely. The place makes me feel bad. They should know it.

As I pay for the leg brace, I tell my mother (loudly, so the salesman and receptionist can hear)

"these kind of places, medical offices and examining rooms, these kind of places should be in beautiful places, like parks. They should be in the woods or in a rose garden."

But the salesman isn't offended. He responds with enthusiasm that he just read an article about this Japanese architect.

"Where did I see that article? Oh yeah, that free paper they hand out on the subway. This Japanese architect is building an office park halfway underwater. It's gonna be all glass. So when you're filing or doing data entry say, you'll be able to look at the fish swimming by!"

__________________

After I pay, I ask the salesman how to exit to the street but the he doesn't really answer me. He continues to go on about this Japanese underwater office building.

I really got him started.

And it occurs to me he missed his calling. He should have been an environmental architect, not a fake leg salesman.

Arpegio @ Lincoln Center

Arpegio @ Lincoln Center
Originally uploaded by Charlie Roberts

KEEP IT SIMPLE

My feet are cold and swollen and blue.

I sit at my desk (a mass of papers, stamps, mess) and ignore them.

JD appears in my apartment. My front door is open. JD comes to force pills down the cat's throat. It's his third day medicating the cat. The cat spots JD and he quietly slips beneath the bed - a delinquent losing a cop.

"Aro0 -oooo!" JD grins. "I'm here!" JD is channeling Jack Nicholson in "The Shining" and

it's pretty funny to watch the poor cat slink away vulnerable and scared.

JD corners the cat in the living-room. I remain at my desk in my bedroom. I hear the muffled noises of an easy mugging. It's quiet and creepy. (What we creatures must go through! Animal and human! Fear and medicine forced on us by the stronger and dominant). This is life.

JD is done - two pills and some liquid medicine - now he is back for me.

"I don't like the way your feet look. How long have they looked like that?"

"I don't know. I don't look at them any more."

"Let's get them up above your head."

"I did that today! For a half hour!"

"Well, lets do it again."

JD instructs on the proper method and I am compliant. I lie on the bed and put my feet flat on the headboard. I stare at the Manhattan skyline as JD swivels the desk chair next to the bed and sits.

I am tumbling. My life has become formless days. People arrive to deliver instructions and machines and things and I have given into it.

I lie and let go.

"How are you?" I ask JD.

"Well, it's funny you should ask. I'm having quite a day. I feel funny complaining to you with your blue cold feet but I was in the dentist chair having my front tooth worked on (JD - oddly enough, broke his front tooth around the same time I did) when I got a call from my tax guy. The dentist was taking a break so I took the call. He said, 'Are you sitting down?' And then he told me that I owe many thousands this year."

"Who wants it?"

"Federal and I don't have it. We only have a little in checking. Ross took her pension early this year and she also made a lot on a few commercial spots. I made some, but it all goes back into the company (JD owns a design and construction company) and we got taxed at 25%. I'm sixty two years old and I've never paid attention to taxes because we never owed much. I just handed it to my tax guy and didn't pay attention. And now I'm learning. The hard way. I don't know Charlie. I really think I want out of this business."

"Finance and money and real estate is so stressful!" I lament.

"You're telling me. We've been riding a wave. We've had a lot of success. We're the best in our area. But with the economy tanking ... this is the second time I've been in the building business. I think I might go back to acting and teaching yoga full time. I want to live in Costa Rica for a while. I'm stressed. But then I look at you and your blue swollen feet and it puts things in perspective."

And I resent JD for using me as a way to calm his own anxiety. I understand it. I'd do the same thing - 'I think I've got it bad - look at Charlie!' - but this kind of thing is exactly why I stay so remote. I've no desire to be a lesson for the rest of the world. Call me if you want to hang out. Don't call me out of pity or because I'm on your list, or to gain perspective. I think JD truly cares about me but it's hard to be the one in the worst place. Always.

JD's cell phone rings.

"I got to take this, this is the guy who owns the bank. This is the guy I owe millions to."

I lie on my fluffy high bed and stare at the brand new neighboring high-rises. I consider sitting up to make dinner or grab a glass of red wine. (It's almost seven). But I stay, seemingly paralyzed, and listen to JD's call as if it were a radio play.

JD is in full focus and form. He treats the banker like they are best buddies.

They won a prize together for restoring an historic ice house.

I listen.

JD's is to sincere and appreciative and overly confessional.

The phone call is taught and dramatic. JD comes off as a guy talking to the mob - trying to make everything family and comfortable - a last attempt before he gets whacked.

JD has several ambitious real estate projects but the economy has turned. There is no money. JD reveals too much to the banker (I think) like he's the loser in a Mamet play. He talks for a half hour.

When he gets off the phone I say, "Well I'm disappointed"

"So am I."

My mind calculates trying to access the best way to approach life and money. Renting a plain jane apartment in a full service building seems to make sense to me all of a sudden. The tables have turned. I use JD to count my own blessings. No banks breathing down my back.

I can see that living humbly without distractions is the better way to go. Men (and women) are drawn to get the golden apple. But in terms of daily life satisfaction all you get is bragging rights. There is little pleasure in owning things or taking on projects or entangling yourself with people who cause happiness -threatening- stress.

I have a list of things I want JD to do

But a doorman from the lobby knocks on the door to tell JD to move his car.

"Will you be back?"

"There's no where to move it."

"JD."

"Yes."

"You need to get in a calm place. Don't react. My tendency is to react to problems that are presented to me, with - 'well if that's the case, then I'm going to do this or that'. I clutch and grab for things. Don't do that. Reacting is bad for you. It's a basic principal of kabalah. Remain calm and focused. Listen. Don't react."

JD listens hard.

He nods.

"Thanks. Thanks for that," and he leaves.

TONY JUDT

As many of you know, I am afflicted with amyotrophic lateral sclerosis (ALS)-better known as Lou Gehrig's disease. For the past year now I have been wheelchair-bound and dependent on a breathing apparatus. This has not prevented me from working, but the disease is progressive and deadly-and there is no known cure.

ALS is a degenerative neuromuscular disorder of the motor neurons: it is related to Parkinson's and Alzheimer's, as well as lesser-known neurological disorders. A cure for it will almost certainly come from research in the field of cell genetics-whether via stem cell research or molecular biology. But the science is complicated and expensive. In order to attract funding we need to draw the widest possible attention to this deadly disease and its impact.

I am writing to you today about Move for ALS. My former student and young friend Saul Goldberg is planning to cycle with Augustin Quancard from Seattle to New York City to draw attention to ALS and to raise money for Project A.L.S ., which supports scientific research seeking a cure to this disease. I am very enthusiastic about Move for ALS, both because I keenly second its objectives and because I am hugely impressed by the professionalism and seriousness of the two young men involved. They have established a substantial campaign Web site (www.moveforals.com) that has already attracted the attention and backing of Web and print media, as well as the support of professional medical organizations.

I am fully supporting this venture and urge you to join me. If you access the Web site you will see how easy it is to make a donation to the cause, with attractive gifts on offer to substantial donors. Or you could simply send a check with clear reference to Move for ALS to: Project A.L.S ., 3960 Broadway, Suite 420, New York, NY 10032, USA. I would be grateful and take it as a sign of support if you would be good enough to forward this letter to any interested parties. If you have direct access to media or Web outlets (e.g., blogs) where you could give further publicity to our campaign, this would be especially helpful to us. Saul is making a huge personal contribution to the challenge posed by this catastrophic disease: please do anything you can to support him.

Tony Judt
New York City

OFFICE for leg braces east 38th and 2nd

OFFICE
Originally uploaded by Charlie Roberts

EASTER SUNDAY

It's Easter. My mother and I miss church so we cab to Columbus Circle and sit on a park bench.

I use my walker to reach the bench. It takes 15 minutes to walk 200 feet.

I'm careful not to fall because if I fall I can't get back up.

I let sweating, panting, muscular New Yorkers pass me and I stay focused on the bench.

The bench is a short walk, a tiny jog away. But for me, it takes mental preparation to reach it.

As I move toward the bench, I try to recall my former self - jogging haughtily through the park entrance. Could my former self imagine this would happen to me?

No.

My mother and I stare (vacantly) at passing New Yorkers - sharing the same lost expression exposing our related genes.

I unbutton my shirt exposing a vee of skin. My skin looks rosy and healthy (to me). Shouldn't it change ?- To make my transformation complete?

The speckled sun feels fantastic. It's 81 degrees. Competing jazz bands play dissonant music. New York City (it seems to me) is the most popular plac

e on the globe. (It bugs me). I try to picture the rest of the world on this perfect Easter day. Is Toledo Ohio (or some city in Nevada) this crowded today... this popular?

I remain on the bench and order my mother to investigate different areas around the plaza and report back.

We stare at tourists. They chain smoke. They look terrible. Why do people mess with their health?

We sit on the bench for three hours and taxi home. I'm reluctant to leave. It feels so hopeful.

________________

When we get to my floor in my high rise apartment building, my mother runs ahead and yells back that ... "You left the door open!" and walks into a stranger's apartment.

I have to shout (as best as I can) "Get out of that apartment. That's not my apartment!"

My mother (who had a stroke recently) deflects my potential taunting by admitting "I'm nuts" - before I can start in on her.

_______________

I start dinner (potatoes in the oven) and mom is off to get us Easter wine.

The wine store is a block away, but still, I'm nervous. I tell her to bring her cell phone.

She calls me from the store and tells me she forgot her wallet. She has $10 on her. She buys an a mini bottle, the kind you get on an airplane.

__________________

Before dinner we notice the cat. The cat is oddly mute. The cat is sick. The cat has a fever, dry nose, and yellow eyes. We stare at the cat and incant the cat's name, over and over, like the cat is drugged up or drunk.

"Aroo." we state.

"Aroo!! " we implore.

"AROOOOOOOO!!!" (snap out of it).

We emphatically announce the cat's name but the cat won't move.

We decide to take him to the doctor tomorrow.

(Turned out - the cat is very sick - and like me, will have to stay in the cat hospital for b12 shots and IV's).

____________________

My mother and I sit down to lamb, potatoes, zuccini, and sauteed mushrooms. My mother has vodka in a wine glass and I sip the mini bottle wine.

We light a candle. We say the family prayer and hold hands.

"The eyes of all wait upon Thee, O Lord, and Thou givest them their meat in due season: Thou openest Thine hand and fillest all things living with plentiessness. Amen."

We eat.

My mother tells me she doesn't want to go to a retirement community.

"Do you want me to start acting like a little old person? Your sister wants to put me away - she won't stop talking about it- that place in Redding. I don't want to go there. All those people talking about what prep school they went to, who their families were! It's awful. Like Sally Bettram. Let me tell you something about Sally Bettram. Sally Betram came over on a boat from England eighty years ago. My family has been here for two hundred fifty years but Sally Betram looks her nose down on me. Her husband was a letch. A child molesting letch. Still Sally Betram couldn't be bothered to say hello to me at the grocery store. I do NOT want to spend the rest of my life with Sally Betram and those people. You know I visited that place in Redding. It's on a cliff. It's not near anything! I drove in there one day to look at it and there was a swimming pool. Not a single person was in that pool. I do NOT want to go to a place like that and be the only one in the pool. I don't want to do it."

My mother is looking at me forlornly, like I have some power over the situation, like I have some political connections that might put her right.

"Mom, you can do whatever you want to do. Tell Sister you don't like that place and let that be the end of it. She's just worried about your safety."

"Well, it's too soon anyway. Maybe I'll look in Florida. I just don't want to be in the middle of nowhere with those kind of people. What about you? Where are you going to go?"

"Oh, don't even think about me. With me, it's a month at a time. That's all I can do. It's pretty likely you'll outlive me. Unless they come up with a cure, or slow it down or something."

"Do they have anything?"

"Not really."

______________

After dinner, my mother reads "Alice in Wonderland" on her kindle. I watch the documentary "No Impact Man" on my laptop, another film glamorizing New York (of the past ten years).

Before bed, I check messages with my ALS Yahoo users group.

There is a posting from a caretaker, a daughter. Her father has had ALS for two years, she writes. Last year they went to Israel to gather stem cells. He's going back soon to have them implanted. "It's our last and only hope. Anyone else going to Israel?"

Stem Cells. I need stem cells.

I need a caring daughter. I am f-cked.

home chelation kit

home chelation kit
Originally uploaded by Charlie Roberts

New York Times Building

New York Times
Originally uploaded by Charlie Roberts

NO MORE PAPER

I lie supine on my fold out chair (my Lafuma) as Susan washes vegetables in the kitchen.

I lie in retreat - like a protected child (or) the blind, being read to.

(Ah yes, scrubbing vegetables, cleaning the floor! I can feel that... remember that).

I tap away on an addictive game on my i-phone.

Susan and I audaciously discuss which nationalities we dislike and prefer. We are both lefty liberals. This makes it okay. Its tongue in cheek.

The Chinese are liars. The Italians sexy and dumb. The English funny cross dressers.

The Dutch seem cool but where did they go? The Danes are having a good time.

The Africans. Too hard to talk about.

We discuss the atrocity of slavery in this country and then worldwide.

If African Americans are angry and defiant - so they should be.

As we talk, I distract myself with my iphone game. I insist Susan try the game.

She kneels by my Lafuma chair and capitulates to my request. She's easy to push around. Whatever I want, I get.

I only have so much time.

Susan's game is interrupted. My sister texts. My mother can't speak and is back in ER in CT.

I go back to the game. I am exhausted from trying to process.

I have to assume my mother will be okay because it is all I have room for. If she isn't alright, I will have to punch out more room. I will have to expand.

I change clothes as Susan tidies the kitchen.

We'll go to a movie!

The Paris (on 58th) is easy for me - there are no cavernous hallways to walk through.

As we taxi there, we pass the (new) New York Times building.

"I love that building, I almost considered applying for temp work there because I thought it would be so great to work in that building."

"I still get a subscription to the New York Times" Susan says.

"Me too!"

"It's a luxury I really can't afford."

"I know but, the paper newspaper is on its way out. So while it's still here, it's fun to get. It will disappear soon enough. Digital, it will be all digital."

"I feel sorry for the Times."

"But then they'll have these foldable plastic sheets. Everyone will carry them around, like water bottles. And the news will just show up digitally on these plastic sheets."

"I love that."

_____________

The Paris is lovely (I've decided). The Paris is the antidote the cineplex. The Paris is my favorite New York Movie Theater (now). The Paris is the hard copy newspaper.

I glide down the aisle with my walker. The slight slant downwards propels me.

The movie-screen is big, the theater - old fashioned. We are two of six or seven.

When the movie starts, I fall in love with the glamour of the big screen. The intoxicating soundtrack.

Susan and I both "ooooh" "ahhhhh" at the expansive beauty like we've never been to the movies before.

"I don't go to the movies much " she concedes. "The last time I went, was with you - (Nine - I was on canes then).

"The Last Station" begins and it's just wanted I wanted to see, old fashioned story telling with sweeping scenery, a rising orchestral soundtrack, excellent actors hard at work in period costumes.

I was fascinated by the diaries. Helen Mirren (Mrs. Tolstoy) screamed at people to put their little notebooks away.

Tolstoy was a Luddite. The movie gently compares today's struggle with technology to Tolstoy's time. The phonograph, the silent films, the reporters (paparazzi). New technology destroying the peace.

And I think about our desire and sentiment for the simplicity of the past.

Susan points out all the surfs in the background throughout the movie. The past may have been beautiful, but only for the rich, for the rest, it was probably dismal.

____________________

We taxi home. I spot (one of those) terrible mini grocery-stores -delis with steam tables and tables and chairs in front.

"See that? That is where I have eaten most of my adult life. And you know what? Sometimes I wonder if that is why I am -where I am - right now."

"What?! You don't think you got ALS from a poor diet? "

"No, but eating at places like that couldn't have helped. All I'm saying, and I'm speaking like Jacob Marley to Ebenezer- take care of yourself, eat right, relax. When you live alone, and you're living under stress, there were days or stretches of time when I simply wasn't taking care of myself. So, take care of yourself."

"I'll have to move in with you.... and torture you."

______________________________

When I get to the lobby of my apartment building there are two large flat screen TVs on either side of the lobby desk.

"What are those for?" I ask Petroff.

"We're doing away with paperwork. No more leaving notes on tenants mailboxes. Every note will be posted electronically. And all work orders from tenants will be done with emails. No more paper work. No more paper."

KITCHEN SHELVES

KITCHEN SHELVES
Originally uploaded by Charlie Roberts

DATE WITH A TUNA MELT

I don't get my full coffee time. My escape into the New York Times is cut short by JD.

JD zooms into my apartment after a morning of yoga in the village.

I'm at the kitchen counter swallowing food.

JD slides his backside down a closet door and sits on his heels. JD, flushed and grinning, is full of young heedlessness.

"I want to see the expression you made when you saw your bed."

(JD made my bed last weekend. He made it taught. I slept on top of the covers. I couldn't get under them. JD wants me to recreate my expression of grateful awe).

"I looked like this" and I make a nonsensical expression of confusion and disgust.

"Sheets and blankets aren't working for me. I need to get a light goose down quilt. Something that I can maneuver easily. Once my legs are under the covers, I'm stuck. I barely move."

"Ikea!" JD says. "They have feather quilts at Ikea! You should talk to Ross (his wife). She's all into the goose-down quilt thing. Ross will point you in the right direction."

The moments of my life leap from the funny to the depressing. You have to have your (face on) when your with me.

________

"Now that I'm here, tell me what to do" JD says.

"Well, I haven't put away the laundry from last week."

_____________________

The day runs away.

There is nothing to be done but accept the help when it's offered. I've become a cheesy opportunist.

"Before you go, can you pick that up? Can you take out the trash? Collect the mugs, the newspapers, the dirty laundry, clean the kitchen, make the bed, pat the cat." - (the cat needs attention).

I sit, tired and achy, and direct JD with the laundry and think...

JD is 15 years older than me. I've counted on that. He looks great. So will I.

I have always had more time than he did. He's been good for advice. Now, I don't know who or where I am (in life) when I am with JD.

This is true also with my friend Nat. Nat and I did summer stock together.

Nat is ten years older than me. Nat until recently had a nasty smoking habit.

I've often thought, "poor Nat and his terrible smoking, what will become of him."

Earlier in the morning I called him.

The bowels of the Sunday Times fell apart all over my front hallway. I didn't want to slip on them.

"I need you for five minutes".

Nat arrives moments later and we chat. Me- unshaven, greasy hair - skinny and bare on my new Ikea bar stool. Nat thick and vibrant and full of small news.

The plays he will see this week. The auditions coming up. News about the Playhouse where we both worked.

_______________

My apartment complex is my whole world.

The familiar voice of Bruce across the hall -(producing his first Broadway play).

Young Lisa (who told me she was nearly diagnosed with MS - "they had it wrong, thank go-d" -and her miniature dog Pogie.

The South American couple next door. (They do cancer research and told me they would look into research for my disease - we never spoke about it again - sadly, there is nothing substantial to report and they don't want to tell me what I already know). They have a new baby!

And of course Spiro my doorman, who always thanks ME when I hand him my walker or ask for help.

The life guard Lewis, handsome, kind and dim. He lives with his grandmother in East Harlem. Lewis helps me out of the pool.

My world is this building.

___________________

I sit with Nat and my coffee. We speak like actors on our fifteen minute break.

Nat tells me he saw the Miller play last night, "A View from the Bridge".

"Oh, I want to see that!!"

"Leiv Schreiber is great... and Scarlet Johanson was very good!"

I tell Nat my Scarlett Johanson story.

"I call Scarlett Johanson, "Date With A Tuna-melt" because, years ago, I waited to see her speak at a talk-back for "Girl with a Pearl Earring". The theatre was packed waiting for her arrival. We all waited a half hour. She got to the mic, spoke for five minutes and then she said,

'Sorry, gotta go, I've got a date with a tuna melt." So I call her, Date with a Tuna-melt".

Nat finds this hilarious. He says he'll have to tell this one to his wife.

He leaves. I sip my coffee for a minute, and then JD arrives. I don't get my full coffee time.

LISTS

Mattie

I did the home kit chelation foot bath tonight. Half a cup for 20 minutes. I guess I can do every day?

I'm eating, eating, eating. ------ I'm still frustrated with my supplement plan. I realized I should be taking creatine away from fruit juice. And I'm taking 800 mgs. Most people are taking 5 GRAMS! So... it hasn't been doing me any good. _____________ I need to start letter writing to get on lists for stem cell. There is so much to do. If I am going to fight. - Charlie