Friday, October 2, 2009

Clinic


Clinic
Originally uploaded by Charlie Roberts

Getting weekly glutathione on Second Avenue and 42nd Street

LITHIUM, results are disappointing (PLM)


There was a conference call today (Oct. 1, 09') with Doctors doing study and subjects and family members. It was an explanation on the study content and findings to reasons for stopping study. And then a qustion asking time for subjects and or family members. They concluded that the subjects taking Lithium actually progressed a little faster that subject taking pilcbo. In early Nov. 09' results from the study will be available and subjects in the study will find out what they were taking. Have to turn over every rock! I was a subject.

Thursday, October 1, 2009

Kevin writes from Sweden

Hi Charlie!

Cool! I say "Hello"! back to you of course! :-)
I think NYC seems exciting and I wish I could go there in the future.
For how long have you had ALS?

Take care!

Kevin
______________________________________

Hi Kevin,

Yeah New York is fun but I've lived here most of my life.

I still bike around the city on a battery bike but I can't really cross the street without falling down.
I feel like I noticed tiny problems three or four years ago.
My body would never feel rested after I worked out.
I did YOGA three times a week and my balance kept getting worse!
When I played tennis I'd need to sleep afterwards.
But officially my foot stopped working and I stopped being able to run about 15 months ago.
I started tripping as I walked to work.

I haven't done much research. I DID change my diet and I take a ton of vitamins.
Just added coconut oil to keep weight on. I like the taste!

Charlie




Wednesday, September 30, 2009

Williamsburg Brooklyn


Williamsburg Brooklyn
Originally uploaded by Charlie Roberts

Williamsburg Brooklyn


Williamsburg Brooklyn
Originally uploaded by Charlie Roberts

Williamsburg Brooklyn


Williamsburg Brooklyn
Originally uploaded by Charlie Roberts

Williamsburg Brooklyn


Williamsburg Brooklyn
Originally uploaded by Charlie Roberts

GRACE














Sunday morning ,

we cab to the Cupping Room in SOHO.
I flirt with the waiter.
The scene is robust handsome New Yorkers, sloppy and tired from Saturday night.
I feel like an outsider (now) I am impressed with the crowd - look how they move! So youngish and urban (catalog ready).

We tip toe ( I hang onto cars, to walls, to my mother) to see my favorite furniture store on Wooster Street, Room and Board.  We stare at furniture.  We sit on sofas. We imagine different pieces for my boxy apartment.

We come home and nap.

We cab to SHREK. I got cheap tickets on the web.
Turns out we're in the very back of the very last balcony.
An usher sees me struggling up the stairs.

"Let me see your tickets... these seats are WAY too far away for you. You'll never make it."

She calls a house manager and they seat us down in the orchestra.

I feel lucky and sad.
Like I'm a kid going to camp because I've got  cancer.

Shrek strains under all those sets and costumes. Too busy. My eyes don't know where to focus.
EVERYTHING is green.  I don't find fairy tale characters funny or compelling.
But, Christopher Sieber is so good. Still I am bitter that I am not up there.

We take a pedicab home for $20.
I ask our biker (this pedicab driver is from Africa and speaks broken english) to take the roof down but he misunderstands and zips up all the plastic windows. It's like riding in a plastic tent.

When we get home, we have a glass of wine and my mother tells me,

"We need to redo your apartment. It's not set up right.  It's my fault (she says) because I dumped all this furniture on you."

It's kind of true she did. And something occurs to me about... sticking up for yourself?  about not agreeing to what you don't want just because you can't get what you really want (or something) In the moment, deicide what you want and have the (sense of self) to wait for it.  Skip the crumbs.

In the morning, we have coffee and read the New York Times.
I mention an article about Barbra Streisand. "Lucky Streisand Fans Were A-listers for a Night".
Barbra Streisand is promoting her new album "Love is the Answer".

The word "Love" is used so freely. It's like a weapon.

(I'm reading Christopher Isherwood's journals. Last night I read a section that struck me.
He's talking about a book an ex-gangster has written called "Love Can Open Prison Doors."
Isherwood writes, " The book is terribly sentimental, and far too breezily written. It recommends "love" as the universal cure-all - without ever properly explaining what "love" is.

And so it is with me.  I read "love" cures! and  G-d is love!  "Love" seems an evasive concept. (duh)

I ask my mom - (continuing with my Barbra Streisand theme - "Everyone talks about "love" being the answer to everything ... but what really IS love anyway?"

My mother (from across the room) says carefully, "well I think about "love" the way I think of you. I love you without conditions... unconditionally."

This frank appraisal is too much for me and I move onto... "well, I think it has something to do with treating your neighbor as you would you treat yourself. That seems to be the cornerstone of all religions,
of all self-help books. Also, in Kaballah, they talk about the greatest kind of love, the most powerful being kindness and generosity that is given without recognition. This is true grace."

(I - of course- do not lead my life with that kind of grace.
But I can read about it.
I can write about it can't I? - (reader) ?)

It's time for my mother to go. She wheels her rolling suitcase behind her and I follow her down the hallway, down the elevator, across the lobby out to the circular drive. She spots a cab and doesn't stop to say goodbye.  She yells "Goodbye!" without looking back and she's gone.


The Beresford


The Beresford is missing its fourth tower because the builder ran out of money, our tour guide Bronco told us.

One: Number 31, 1950 Jackson Pollock


TUESDAYS WITH MORRIE

I remember watching the TV interviews on ABC.
I remember trying to memorize what Morrie said.
Something about love being the answer. Letting go of anger.

Two summers ago I picked up the book at a tag-sale on the Cape.
I read it in a few sittings. The book didn't make much of an impact compared to the TV interviews.
The book is still sitting on a dresser in my parent's house in Cape Cod.

Tonight, I learn, that Morrie died from ALS. Oh.

I didn't remember that. Two summers ago I didn't really ever consider ALS.
I didn't consider what he had.
All diseases seemed the same to me.

Somehow I feel competitive with Morrie (or)  maybe  a little cynical.
All those wonderful thoughts he had, I have had them too (I think).
I'll have to look at the book again.
But, I don't know.

Tuesday, September 29, 2009

Stuart at the Frick


Stuart made good money painting copies of his original painting of Washington.
Frick only collected american painters Whistler and Stuart.
Gilbert Stuart (1755 - 1828)
George Washington, 1795-1796
oil on canvas


The Devil at the FRICK




My mother liked this Duccio painting at the Frick.
Christ is offered all the kingdoms in the world by a very scary looking devil.
The kingdoms look like they are made of sugar.


Duccio di Buoninsegna (c.1255 - c.1319)

Although Duccio was the leading Sienese master of his time, little is known about his life. The earliest record of the artist dates from 1278. In 1285 he received the commission for a painting believed to be the Rucellai Madonna now in the Uffizi. His greatest work, however, is the Maestà, a large altarpiece first mentioned in a document of 1308 and finished by June 9, 1311, when it was carried triumphantly through the city streets to the Duomo of Siena.



Whistler at the FRICK



Whistler is compared to Rothko in this painting.


Commentary: Rosa Corder was a painter and the mistress of Whistler’s unofficial agent, Charles Howell. It is said that Whistler observed her in Chelsea one day wearing a brown dress and passing before a black door and, struck by the color effect, used it as the basis for this portrait. Miss Corder later reported that she had posed for the picture some forty times. An acquaintance  remembered her as a person of “a beautiful stillness.”

Central Park


The San Remo


BUSY DAY - BUSY NIGHT















Whatever I suggest, mom says "sure!" and we're off.
So, we cab to Central Park.

The park is packed. The weather is perfect. It's sweater weather.
We rent a pedicab. (Like a horse and buggy, but instead of a horse, there is a man peddling a bike).

It's competitive for the drivers. As soon as we show an interest, two or three of them hound us, shouting "follow me". We take the one we spoke to first. We say yes without negotiating a price (stupid). We pay $60 for one hour.

I could tell it was the right thing to do. This will be fun.
It feels vintage and smart.
Like you're on a carnival ride tailored to your tastes.

My mother calls my aunt on her iphone, "Guess where I am? I'm on a rickshaw with Charlie riding around Central Park!" The tour guide talks over my mother.

"MOM! Perhaps we can call them AFTER our tour!"

Our driver/tour guide, is twenty-five and kind of cute. His name is Bronco. He has thick calves and an unintelligible accent. Bronco is from Serbia. He studies landscape design.

"How great that you get to work in this beautiful park!" I interject.

This is his third summer on a sort of exchange program?
Later I wonder if he made up his major to win points - (to get a better tip).

As we circle the park, Bronco fills his patter with movie trivia. Apparently the park is mainly of interest because of its use in american movies. He mentions movies like Elf, Night at the Museum, and Home Alone 2. (I was an extra in that movie traipsing around the park for two or three days one cold December. I don't tell Bronco this. I don't want to mess with his rhythm).

* I also shot an NYU film at Poet's Corner. This was around 1992. It recently resurfaced in an in-house film festival for the USA network in the city. A friend who works at USA emailed me).

Bronco tells us many things. Here are a few that I can remember.

1. The land originally used for the park, was swamp land.

2. The east side is old money and the west side is new money. My mother finds this funny.

3. The Dakota and the Plaza share the same architect, Henry Hardenbergh. When the building was completed, most of the upscale apartments stood tens of blocks to the south, so the legend goes that the elite remarked that they could as well have built this residence in the Dakotas. Bronco told us that the Dakota has it's own (never used) subway station in the basement. This seems dubious.

4. The San Remo was the first building with twin towers in the city.

5. The Beresford only has three towers on the the top, it's missing the fourth because the builder ran out of money.

6. The opening shot of the TV Show FRIENDS is supposed to be the Cherry Hill Fountain.

7. The center of the park, by poets corner, is filled with hundreds of gorgeous elm trees. These trees escaped Dutch elm disease (in the sixties?) because of the protection from surrounding sky-scrapers.

8. The center of Central Park (by that angel statue) is actually the center of Manhattan as well. (really?)

9. Daniel Webster gets a statue because he was the first congressman to fight to end slavery. (This elicits the confusing conversation of who Webster of Webster's dictionary is).

10. Bronco tells us there is croquet club (owned by the British) you must wear white, you have to be over sixty-five to join, and it costs us 4 thousand dollars a month to be a member.

I ask Bronco, "is there anything in Serbia like Central Park?"

"Belgrade has a park but it is not nearly as big. I've traveled all over Europe and the most beautiful city I have seen by far is Prague."

"Prague is beautiful" my mother agrees "and Venice!"

"Have you seen any of the US?"

"Only New York and Boston, but next week I visit my sister in Chicago. She studies graphic design there."

"Oh, Charlie went to Northwestern!"

"Mom, Bronco doesn't know about Northwestern. Bronco doesn't care about Northwestern."

As we return to  Columbus Circle he points to a public bathroom. He tells us during the civil war it was a jail. My mother uses it.

Bronco looks like he had a genuine experience with us. He trys to look us in the eye and thank us for our enjoyable tour but my mother and I drop our outgoing personalities. I lamely shake his hand. My mother gives Bronco a $12 tip and Bronco is history. We cab to the Frick.

The Frick feels cold, and lush, and rich, and snobbish.
The museum-goers are preppy and reserved.
The security people don't respond when we say hello.
The paintings which are numerous and important are also recognizable.

And there is the fantasy of living in this mansion in the early 1900's on 5th and 70th.
The Frick brings up socialist stirrings.  Should we congratulate this capitalist by visiting his sumptuous home where he hoarded all this art? Still, the grandeur and elegance appeals to my pretentiousness. And ... if not Frick, than someone else.
(Perhaps in a hundred years, people will be visiting the homes of Bill Gates or Oprah).

(Again) I lean against my mother for the tour.

We see paintings by Whistler, Gainsborough, Stuart, Turner. Whistler is compared to Rothko.  Our two museum visits are connetcted.

Frick was a big industrialist. I find out (through a search on the web) that he was one of the men responsible for the Johnstown Flood. He founded the South Fork Fishing and Hunting Club, along with Andrew Carnegie and Andrew Mellon. That club was responsible for the deaths of 2209 people. I know all about that flood because I used to do summer stock near Johnstown.

My mother and I sit on a bench in the closed garden sanctuary. We sum up.
My mother's favorite painting is a religious one by a dutch painter. It features Christ and the apostles.
He is teaching them the beatitudes and the Lord's prayer. There is a windmill in the background.
(I love that. The dutch painter knew better but couldn't resist).

"The (very rich) used to collect art. Paintings used to be a big deal. What do rich people collect now?"
I wonder aloud.

"Painting and art was a big deal even when I was a child" my mother says. "We all had our portraits painted. It was something you did."

(My mother sat for a portrait when she was a teenager. The painting is rustic. Folk Art -ish.
Later, in the sixties, she commissioned another portrait in New York. This portrait, makes her look like a blowzy movie star. Her hair is puffed up and blond, her cheekbones pastel streaks.

We leave the Frick for the the theatre district.
We grab dinner at Daniella's on 45th and 8th Avenue. We get the veal.
I eat my mother's veal too because I'm afraid of losing weight.
(Imagine wandering around the city with ten pound weights on each foot.
This is the energy I expend to move around).

At ten of eight, we meet Jondon and Ross in the lobby of the Imperial Theater on 45th Street.
Ross was in "Pippin" at this theater, sometime in the '70s.

Jondon and Ross look amazing. Jondon has just had his haircut. He looks cute and craggily. Like Robert Redford on a good day. Ross also looks so good! (Has she had work done?) When I told my mother their age, even she, who won't give into my requests for amazement, paused and exclaimed, "THEY'RE in there SIXTIES?!"

Our seats are excellent but (a little) far back in the orchestra.
The show begins slowly and seems somewhat prosaic, by the book (for me) at first.
But, they have to take their time to set up the story. And like fireworks, the ooh! and wow! numbers arrive.

The plot turns on the plight of the coal workers, 300,000 men out of work.

I get it.
It's sad for them. It will change their lives. Ruin them financially.
But I wonder (quietly) ... is that SO bad? These dramatic songs about a world lost.
How bad is it? Compared to my situation. (I'd gladly switch). Still, I give. I empathize.
At one point, I get a lump in my throat. You can't help but get teary eyed at a good musical.

I know a guy in the ensemble.
I've done voice-overs with him.
This brings up feels of inadequacy which I suppress.
I think... I would love to live a life in the theater. I tried.
It's hard (though). Maybe it's better just to observe and tend to your own life musical.

At the end of the show, the little boy playing Billy Elliott sprains his ankle and is replaced by another little boy for the last three numbers. The replacement is far superior. I worry about how all the little Billy Elliotts compete with each other.

After the show, Jondon drives us home in his SUV. We laugh about the stuff our Serbian tour guide made up. We hug.

At home, the cat meows, " Where the HELL have you been?"
He spends the night playing musical beds, first me, then my mother, back and forth.

Monday, September 28, 2009

THIS IS (like me)


How are some of you all dealing with fatigue? 

I can sleep for 10-12 hrs at a time. When I wake and then get moving around I tire very quickly. I am trying to keep working (I want to keep working) but I take so long to get out of bed & get dressed and I am already tired and I haven't done anything!
I have sent my doctor a message but I thought I would look to see how some of you guys have dealt with this, short of quitting work. Staying home bores the heck out of me.
Thanks,

Friday

THUMB

Today I wake up and it feels like I broke my left thumb. Out of the blue.

HOT AND COLD


I meet my mother at Penn Station on Friday afternoon on my zippy bike. I wait on the sunny corner of 31st and 8th for about 45 minutes as hassled New Yorkers wade their way through the anxious confusion of that seemingly lawless part of the city.

It's like a tragic MGM Gene Kelly musical. People get in and out of cabs in the same way but with various guises and bits. At one point, a woman jumps out of a cab screaming. She has cut her finger drastically on a metal part in the cab.

"Help! I need something! I cut my finger! I put my finger in that thing and it sliced right through!"
The woman runs toward Penn Station followed by her dwarf son. The cab pulls away and the next cab pulls up.

My mother texts, she is on 31st and 7th directly across from the Pennsylvania Hotel. I buzz around the corner and pass a block-long line of tourists waiting for cabs. My mother is not in this line. My mother is a half a block away.

I ring my bicycle bell. "Welcome to New York!" (ring, ring)

"Hello Son. Why are you ringing your bell?"

"I'm welcoming you to New York, Mother. Welcome to New York!" (ring, ring)

There is a thrill in the air of New York today. New York can take on multiple personalities. Today, the city is not a hassled work place, a crowded city of nasty overpriced rentals, today it is a big, exciting cultural, mecca on a tiny island full of hopeful possibilities.

"Mom, the line for the taxis is over there." I point to a crowd of over a hundred people.

"You mean I have to get in THAT line?"

I spot a lonely cab dropping off a passenger twenty feet ahead and grab it for my mother.
We skip the line.

Mom quickly stuffs herself in the back of the cab like she's making a (get away) and then she commands, "1 RIVER PLACE" - like she's saying 30 ROCK or TRUMP TOWER (Jeeves).

(I explain to the cabby that it's the last apartment building on 42nd Street before the river). We both speed away but I get home (on my electric bike) a full ten minutes before they do.

My apartment has been scrubbed clean for my mother.

She sits down and (at once) begins an adversarial relationship with the cat... and the cat gets it. The cat understands. The cat likes it. She scolds the cat for clawing the furniture (like an angry grandmother) and the cat responds with intense love.

I make a lunch of tuna, avocado, walnuts and apple slices. We go to the roof of my building which has an amazing view of the city. I stand by the door and order my mother (who has the legs and stamina of a forty year old - of a woman (literally) half her age) to stroll the entire roof. I take pictures of her taking pictures.











We grab a cab and go to the MOMA on 52nd and Seventh.

I convince my mother that we need people chi. The bike path or park would be lonely. We need to be with the masses. We need to feed off the excitement and expectations of Friday night. And (besides) I love the MOMA, but feel shame for not discovering NEW art. THIS art has been christened acceptable. Still I like going there.

As we cab to the MOMA, my mother says (staring out the cab window into the dusty gloom of midtown) that the city is filled with a rainbow of different people, a real mix of types. I take the opposite view. Manhattan is filled with all the same people. They all look the same (to me).

My mother points to tall black woman, "she's different."

But in fact, I contradict, everything about her is just like all the other women on the street except her skin. She walks the same New York strut, she wears the same black clothes, she's even straightened her hair to mesh with the rest of the population.

We near 52nd Street by Fifth Avenue.
The cab driver having noticed my disability makes sure to drop us off directly in front of the museum.
The MOMA is packed with sexy, young,  international types. We find our way to member services.

We try to get tickets to "Taxi Driver" but I have the wrong day,"Lord of the Rings" is playing instead.

My mother is excited, she wants to see New Zealand. I tell her we could go the other film, it's more of an art film, more MOMA-ish. (In truth, it looks confusing and opaque but it IS sanctioned by the MOMA). My mother says she's never been to an art film and she really goes to movies just to look at the background. All movies are visual travelogs for my mother, plot and character, secondary.

We get our free member tickets and are on to the galleries.

We take three escalators up to the Jackson Pollock rooms.
I might have rented a wheel chair but I lean on my mother instead and she is remarkably strong.

(When I was a kid, my mother used to take me to "go sees" in the city. We were about the same height. But during those years, I began to outgrow her, and as I got taller, I would lean on her shoulder which she didn't like. Thirty-six years later I find myself leaning on my mother (again). And I apologize to her but (this time) she says "don't worry about it.")












We stare at Gorky, Rothko. and Motherwell. We talk about what we see and and what we like. I like the sheer graphic beauty. My mother likes discovering the hidden details. "Look there's a duck! And another eye! They ALL like to paint eyes!"

I think about that, why they painted eyes. I think about how vision is a (really) a poor sense, the one sense we overuse, the one sense we use to judge, but really, it is the most deceptive. I've begun to let go of the physical, as it becomes less and less attainable for me.

Also (I think) one has a relationship with a painting.
You eye the painting and the the painting eyes you.

The huge Pollock seems more wonderful to me than ever. Like he stumbled on G-d. This painting represent the beginning, the end, eternity, and everything in the universe.











My mother spots some video art. "I love these! They sell them in the art museum in Naples."

"That's video art." I say to my mother with caustic condescension. "It's a big deal." I tell her "my friend CAR wrote her dissertation on Video Art."

"Really? ... well, I like it. It reminds me of the ocean. You know? Soothing... the way the clip keeps repeating over and over.

We find our way to the shop. My mother buys Frank Lloyd Wright playing cards for her bridge club.

It's time for our movie.
The MOMA movie theater is always filled with the very young and the very old, both groups looking for a cheap ticket.
My mother go to the ladies room while I find seats. I sit in the third row from the back on the aisle. I chat with some young girls. They tell me the movie is three hours long. (we'll never make it)

A little boy with missing teeth wanders up to me asks what movie I'm about to see. I flush and feel on the spot, like it's a trick question. For a moment, I can't remember the title. And the then it comes to me,

"Lord of the Rings?"

He nods and scampers back to his father sitting three rows down. The father gives me a "thank you" smile. It's clear they were afraid they had ended up in the wrong theater. They were afraid they might be in the "art film" theater.

I hear an unfamiliar voice calling out my name. "CHARLIE?... CHARLIE!!"

I turn around and see a MOMA usher with my mother by the entrance, twenty feet away.

I put up my hand up (half-mast). "Yes, I'm right here." If I whispered, they would have heard me, I was that close.

I see my mother make the silent words "There he is" and thank the usher.

She sits down. We sit in silence. My mother is hoping I'll quickly let it go. But I won't.

"Mom, I'm just curious, where did you think I went?"

"I couldn't see you."

"I was sitting right next to the door."

"I know but I couldn't see you. I looked twice, I couldn't see you."

I shake my head using the "I give up" expression. I'm Oliver Hardy to to my mother's Stan Laurel.

(Did she think I was kidnapped? Did she think I ran away?)

Lord of the Rings begins and it is beautiful and engaging. But it is obviously divided into three acts. We leave after the second act. It's nine o'clock. It's time for dinner.

We go to the Modern next door.
I've always wanted to eat there. The dark, chic dining-room and bar is bustling with the rich and the sleek. (My mother notices that everyone is skinny). The modern is filled with fitted suits and sexy shoes. You're plop in the middle of drinky, privileged Manhattan.

The restaurant is always booked but they do have (first come - first serve) tables by the bar.

I hold onto my mother's shoulders as we navigate our way through the bar to a low candlelit table.

We order wine. Or my mother does. I can't read the menu. My mother can. She had her eyes fixed. I found myself the entire weekend asking my mother, "What does this say? What does that say?"

Our waitress is friendly but all business. She tells us the chef, Gabreil Kreuther won best chef NYC this year.












We order Scottish Salmon with horseradish scallops, and Grilled Diver Scallops with corn, cherry tomatoes and morcilla sausage. The wine glasses arrive oversized (love the drama of the oversized wine glass). The food portions arrive absurdly small. This too is dramatic and would normally suit me except I am losing weight by the minute and need to keep weight on to prolong my life.

We talk about my dad. How one fall in a parking lot has changed their lives.
My mother is worried that HER life will never be the same again.
I mention to my mother that I may have my OWN problems.

So...

I compliment my mother's physical strength, her walk! She's so lucky. I describe for her a recent memory of walking with her, my father, and aunt and uncle, at the Ritz in Naples, Florida. My mother walked like she was two generations younger than the others. I couldn't get over it. My mother attributes this to her years as a dance major, from forming her core strength as a teenager.

After dinner, we walk past St. Thomas Chruch to find a cab. Fresh flowers have been left behind the locked gates for the weekend services. I take a picture of them. It makes New York seem so small and quaint. So "Our Town".















On the elevator ride up to my apartment we run into Karen.

She's an actor I've worked with in summer stock. She watches me struggle into the elevator and can't hide her pity.  She knows. How? I don't know. But instead of saying, " Hey! Wow! Are you okay? Did you hurt your leg?" She pretends nothing is wrong. This is how I know she knows.

I am hot and cold to her.

I'm not sure why.

Sunday, September 27, 2009

soho


Nancy
Originally uploaded by Charlie Roberts

Central Park


Central Park
Originally uploaded by Charlie Roberts