Naples

Naples
Originally uploaded by Charlie Roberts

West 26th NYC

West 26th NYC
Originally uploaded by Charlie Roberts

I AM GLUED

Hey Charlie,

Glad to hear you're back. I'm just picking up your mail now as we've been packing, moving, and unpacking for a little while now. I'm getting used to living by the BQE, the super is in our apt now fixing a few things and cleaning the eight gorgeous huge windows that sold us on the place.

Our new neighborhood is super cool. Near Pratt (art school), not that anyone knows where that is. I would love to hear what your friend thinks of Monterrey stem cell. Monterrey should be publishing the results of their Phase 2 trial this month. I'm sure Hans or John will post it as soon as it comes out. Lots more people from PLM seem to be going. I'm not sure what's motivating them as neither Hans or John reported any benefit although John was staying steady for awhile which we would all kill for (can i say that?). The more pals Monterrey works on the better. Please god deliver a cure!

- Blue Skies

______________________________________

Blue Skies,

Good to hear you are in cool digs.

New York gives life.

I've finished the Salinger and moved on to Fitzgerald. Gatsby is a page turner. I am glued.

Last week, I fell in the lobby of my apartment building and chipped a tooth. Picture the ambulance to Mount Sinai, the cinematic crowded emergency room - me my jagged front tooth being pushed around in a wheel chair through the warren of the noisy jam-packed ER. The next morning - a ride through the slush and snow to my dentist on the upper west-side- my good looking denist glued on a new bottom half -and ... TADA! a new me for $425.

(This disease IS expensive).

I've no pain, no nerve damage - I lucked out. Just took the goose out of my step.

So - I'm fine but wan.

A friend visits this weekend and is painting my bedroom apple green -

(or at least one wall). I also have my writeing lab. The lab is encouraging me to put together 10 to 12 writing samples for what though... publication?

Here is the e-mail from Bill. He is (somehow) involved with stem cell research at the Gladstone Institute in Sanfrancisco. This is what he said (not too much).

______________________

Charlie,

I looked this over, and I honestly can not tell anything from it. The logical seem to make some sense. The reports are not in Journals that I would normally trust. Still it is impossible to discard something without well controlled trials. There seem to be anecdotal evidence, which may be as good as it gets for the moment. I try to keep an open mind to something like this working. I hope that helps.

Bill Croton

Gladstone Institute of Cardiovascular DiseaseMission Bay, UCSF

___________________

Here is my new mantra - "changes are happening and miracles are happening right now".

- Charlie

chelation

chelation
Originally uploaded by Charlie Roberts

On the Way to Patient's Medical

Bryant
Originally uploaded by Charlie Roberts

MUSEUM FOR THE CITY OF NEW YORK

A commercial I made twenty years ago is going to be part of an exhibit at the Museum for the City of New York. It was shot by a British production company. We shot all over the city. There are two shots of the Twin Towers.

The exhibit is called "Cars, Culture, and the City".

http://www.mcny.org/exhibitions/future/Cars-Culture-and-the-City.html

This is the spot.

CHANGES

a patient on "Patients Like Me" posts:

"to my surprise, my toes started moving on my left foot and my fingers are moving again. What is happening?"

BIG BALL IN THE SKY

Jackie is doing the dishes. It's three in the afternoon and I'm still with coffee. I haven't eaten. I'm still undressed.

I'm reluctant to leave my apartment since I broke my tooth. So I sit on the couch and drink cold coffee and read Jackie the headlines from Yahoo News.

"Simon Cowell is getting married."

"Oh she's beautiful Charlie, Simon chose well, she's a very beautiful woman. That's a good match. That Simon - he knows what he's doing."

Jackie finds an empty wine bottle and tosses it into my recycling.

"... a dead solider."

"Says here Chile had an earth quake."

"You know what? We had one in Jersey last weekend. My daughter laughed at me and said it was probably just a low flying plane. Next day it was on the news, earthquake in Jersey!"

"And they're expecting a tsunami in Hawaii?!"

"Charlie, I tell you I don't sleep at night. And you know why? Because we're just a big ball in the sky. Why are there so many disasters? I know it's depressing. But that's what's happening... disasters! Ice burgs floating away, the penguins don't know where to go, big waves washing away islands, and... earthquakes in Jersey!

I'm telling you, we're just a big ball in the sky.

snow

NUMBER EIGHT

On Wednesday I fall in the lobby of my building and break my front tooth.

(# 8)

I put my tooth in my pocket.

An ambulance takes me to Beth Israel.

I have my bottom lip sewn up and go home.

On Thursday I go to my dentist on West 68th and Broadway.

It's snowing and slushy.

Instead of canes, I use the rollator.

The dentist bonds a new tip for the tooth. It takes a half hour.

There is no nerve damage.

It looks amazing. I feel no pain.

I sleep.

BELLA

It's around eleven in the morning and Jackie decides that she'll get me a new printer.

My new printer died yesterday. I've had it three months? I spent a couple of hours with tech support in India. They won't fix it or send me a new one because there is no record of my purchase.

Jackie's not having it. Jackie gets a "don't f-ck with me" thing going - like she's psyching herself up for a gang fight.

I tell Jackie not to worry about it. I'll throw it out and buy a new one (add to the e-waste) or I'll just cab to Staples to make copies. I can't spend my days on the phone with tech support in India.

"Well I can."

Jackie won't be stopped. She gathers pertinent information, date of purchase, model number, credit card used, and leaves without saying goodbye to me or the cat.

Two hours later I'm making lunch - she pops her head in the kitchen and says "I've been on the phone with CBS news. They have a consumer reporter there. I told them about you. They're all over it."

I sigh, "Jackie, I don't want to be on TV."

"Don't YOU worry about it. I'll be on TV!"

She shakes her head and keeps her voice strong and loud -like she's channeling Bella Abzug,

"You think they're gonna get away with this? You think that the CEO of Kodak isn't out for drinks right this very minute with some girl friend? Avoiding calls? You thinks he cares if he's stealing money from people ... daily? No. This has got to stop. I won't let it happen. We'll have CBS over there at their offices on Park Avenue. This is going to be on the news!"

Jackie leaves and I smirk and wonder what have I done.

And then I begin my own tirade. I try to get my medication.

My rage button is pushed when I call my insurance company. I can't help but hate the people I talk to on the phone. I try to remind myself that they're just making a living.

But the system is so sadistic I despise them for working for there.

I am an a--hole on the phone. And, it's justified. I rant. And because of my invective wrath, I get the medication. And for some reason, this time? It's cheaper. (Shouldn't there be a set price?)

I've been without my medication for weeks because they said (again) I lacked proper paper work. I said "I can't possibly understand what more you need. I've been getting it for a year. You have all my paper work. You gave it to me last month. I got you the paper work (again) last month, and now this month, the paper work is no good? Do I need to hire a lawyer to get this medication?

The representative has a script. At the end of the call she asks,

"Mr Roberts. Would you like me to put you in touch with a pharmacist who could explain to you the ramifications of not taking your medication?"

"You have been denying me this medication off and on for months. It is the only medication available to me. I know what will happen when I don't take this medication. I will die sooner. "

When I get off the phone, I feel hungover from rage. I'm spent. I feel seedy for revealing my emotional range to a stranger with a southern accent in an unknown state.

I sit with my head in my hands.

And then Jackie struts into my bedroom office, triumphant and high on life.

"You'll have a new printer and two new ink cartridges in five business days! Now I gotta go have a cigarette."

A YEAR AGO TODAY

So I sit and wait for a call from Doctor Ranjan.
I don’t want the call. I want to continue in the warm bath of ambiguity. If I don’t know, it’s not really happening. Mostly I feel like it’s not really happening.

When I see those doctors (doctors like Dr. Ranjan) there is some private, stubborn, proud part of me, telling me that they are wrong, I am fine, I have been in scrapes before and it’s worked out. I am a loner, a survivor, self reliant even if it hurts me. It feels better (in the end) to be able to be bitter if I choose. No studied gratefullness here.

Dr. Ranjan and the other doctors seem to be almost excited by my symptoms, like I’m a rare species that a graduate student in anthropology has the opportunity to witness... at last! (Or) like I’m a lazy participant on "the Antiques Road Show" with a unique piece of pottery worth thousands, yet it has no interest for me. Kindly take if off my hands and let me get out of here.

When I visit Dr. Ranjan (up at Columbia Presbertian on 168th Street in upper Manhattan) the building is tired and smelly and depressing. There is a support staff of irritable African American New York City girls who take zero pity on me, which I enjoy. The white middle aged doctors that walk by give me a solemn warm closed lip smile that offers, I know why you’re here, I’m sorry you’re here, but… welcome youngish victim.

I think... (I have no interest in your kind politeness).

Like naive criminals on their first day in jail I think, (you don’t know me. You think I’m going to be sticking around here? I live to be unstuck).

My brain. My spirit? My ethos. Whatever is that makes me, believes all of this will go away.

I want to make plans. I'm of course. overwhelmed. If I was confused about my life before, I am now so puzzled all I can think to do is... pick up after myself, read novels, and eat.

I had been drinking wine (nightly) but I realized that it was exhausting me. I always drink too much.
It used to be the hang overs. Now, I just can’t seem to get out of a funk of sleepiness. So wine is not a good choice.


I went to see "The Curious Case of Benjamin Button" last night. It was enjoyably dopey, hollywood clichés and derivative, especially apparent when you look at the original short story (I skimmed it online late last night). But Brad Pitt is gorgeous sometimes. And all those millions of dollars to make pretty pictures. (The old age make-up just kills the purity of the film and story telling).

This is a movie that may find an appreciative audience, years later.

I did relate to the Benjamin Button. I feel like an outsider who is aging the wrong way and is doomed to a sad and lonely ending. (And like the character of Benjamin I like a good adventure). I loved seeing Brad Pitt get better and better looking, and the love scenes on the beaches of Key West were hot. Brad is appealing because he is gorgeous and so available to women. He is a cute, manly, charmer that only a girl could truly appreciate. He represents the best of the fantasy of having (a sexy boyish available boyfriend). He can’t help how well he moves, or how his expression might contain just the right amount of manliness, vulnerability, cool charm and sweet sexiness. He's channeling Paul Newman, Robert Redford AND Steve McQueen.

I think that Brad Pitt is a bit studied in his behavior, if he hadn’t become a movie star, he might have been just a cute, twinkly eyed dad. But maybe ALL those stars are making up that super, cool, handsome behavior.

As I sit in the movie theatre watching Brad (who I met once before he became a big star... he was nice) I have the foolish idea that I could be him with just the right diet, work-out guru, and glamorous circumstances. In a rough hewn cottage in the Keys, my shoulders would widen, my smile would charm, MY FEET would slip over a motor cycle just like Brad's.

I have to remind myself, I have to REPEAT to myself that I have a disease.
And it’s a terrible disease.


I might go to the Keys and act like Brad Pitt, but then (later) my life will be shit.

Maybe that's why the movie was giving me comfort, the idea of seizing adventure and living for the moment because (after all) we ALL end up reduced to diapers. In my case, my aging is speeded up not going backwards like it did for Benjamin Button.

Still, there IS the doom, the feeling of knowing that it will be difficult.


For now, thinking about it doesn't much move me, because I still have to figure out a way to pay the rent, to enjoy my surroundings, to nurse my resentments. To figure out... what?

I guess I could call Dr. Ranjan to make an appointment to see them.
They must have the results from my spinal tap, it’s been over two weeks.
But I want to deny this thing.


I have a problem taking on stressful confrontations because the results seem so finite to me.
And because the results may be stuck in my head (running round and round) for years.

Months?

So I wait for them to call me. As if it is an act of aggression on their part.
And what’s the big idea anyway? There's no treatment so why is there an entire floor devoted to it at Columbia Presbyterian? I guess there are other diseases they work on, but still, who are these people that want to study it?

I wonder if they must be a tad gleeful to get new clients into their empty offices.

When I go to their offices on 168th street, I'm the only patient in the hallways, their shabby examing rooms... for hours. And Dr. Ranjan seems to have this terribly, flexible schedule. These hyper special neurologists seem to have the opposite problems of other doctors, time on their hands.

A friend suggests it's because the disease is so rare.

I am a rare bird.
A rare bird who is "not to get down or despondent".

G-D's FAVORITE

It's sunny. It's 45 degrees. It's two in the afternoon. I decide to see if I can ride my bike.

Spiro (my doorman) greets me in the lobby. Spiro is crazily over attentive to me. He is - to everyone. There has been tragedy in his life. He's from Albania. He has decided something about life. I'm not sure what it is but it translates into unceasing kindness and attention to others that often rubs me the wrong way.

"Spiro! - I'm off on a bike ride. Do you think I'm crazy?"

And then I fall... I feel my back legs give out in a way that they never have before. I fall backwards and lie on the cool marble lobby floor comfortable and cozy like I fell into a snow bank.

Spiro tries to lift me up, but it's not possible (now). So he rolls a luggage cart over to me and I manage to right myself.

"I guess that's not a good sign."

"Well sir, at least you had the warning, yes?"

But this warning doesn't stop me. I go to the bike room and get my bike and bring it outside.

I notice that it is much harder for me to do than the last time. It feels like... it's not you (exactly) but a storm around you. Your mind is convinced you can do what you need to do- but it's such an enormous struggle, a struggle that is outside of you... so you persist, you perspire, you groan, waiting for the winds to die.

Mounting my bike takes all the concentration and energy and hope and strength that I own.

But I do it. And once I am on my bike, my body and mind chemically change. It's worth it.

The wind, the cold, the aggressive runners, the scenery speeding by, gives cues to my body.

It's GOOD for the body to shiver. It's GOOD to feel light and wind. Its' GOOD to face the elements. My brain and nervous system re-jiggers. It is about as healing as it gets.

I bike down to Battery Park. There are people out with babies. Fathers playing lacrosse with their sons. Runners and die hard tennis players.

I turn a corner and notice the Statue of Liberty. There is a clump of six or seven people taking it in. All six stare into electronic devices. It is a windy vigorous sunny day on the Hudson River and all six are enveloped in the digital view of the world. It is more compelling to see the statue of liberty though their cannon kickback or talk about it on their SONY PDA than to simply be there in the moment. (There is fear here). The fear is that the moment isn't enough (or) I don't understand the moment but my electronic device will make sense of the moment for me later.

And maybe they are right.

I bike back up town and pass my building. It's cold. I shiver. But it's sunny and clear.

I get to around 6oth and decide to turn back.

My battery runs out.

I call JD. I wait by fence on 59th and the river. JD picks me up in his big huge car.

When I call JD, my fingers don't work. The cold messes with muscle articulation.

And because I am dehydrated I am frighteningly inarticulate. My tongue doesn't work.

JD drives me home and when we get to my apartment building - Spiro (the doorman) pulls me out of the car and tells JD, " G-D truly loves this one".

Up in my apartment JD cleans for a little bit, changes a light bulb, and advises me on the miracles of Chi-Gong.

After he leaves, I feel good - like I spent the day ski-ing.