Friday, March 12, 2010

Symptoms

Hi Blue Skies,

Just so you don't get the wrong idea. I'm not riding my bike, just wearing the helmet. Falling and dying from internal head bleeding seems optional.

I COULD still ride my battery operated bike but I will now need help getting on and off.

Here are my symptoms,

My feet are swollen. My voice sounds like grandpa. I have had things stuck in my throat when I couldn't breath, popcorn, almonds. Scary.

I definitely NOW can not walk even two or three steps without a cane or a walker or gripping the wall.

On the upside. I LOOK good. My skin (from eating right) is radiant. TWICE, I've been asked about my vitamin regimen because my skin looks so good.

I swim every day. This takes a lot of heave ho. I sleep superbly. Bowel movements perfect.

I'm in good shape, except for the fact that I can't walk and have a terrible disease.

I just wanted to tell you that in case you thought I was doing so great.

I am good though. I am not worried (right now).

Peace in the middle east,

Charlie_Roberts


SECRET CODE

I'm in my underwear doing dishes and Jackie comes over to soothe the cat.

"You're not going to that place again are you? I don't think you should."

Jackie doesn't like Patient's Medical. She went to my last appointment and she became big eyed and remote. She had that distant look of (covered up) fear and nausea.

I'm due for my third session of chelation today. The last one was draining. Jackie thinks it's a bad idea. She thinks all this medical stuff is "bullshit". She thinks I should stop taking vitamins, eat hamburgers, drink wine, eat a lot of cake and chocolate and play musical comedy records.

"Charlie - you need to sing."

"Jackie I can't sing."

"You sing in church."

"No Jackie. I don't. Not anymore."

"I think you should sing."

"Okay, I'll sing."

"And that building! Do you have to go that building? Only one elevator works in that building... and all that security! I don't want to be stuck in a building they're trying to protect from terrorists! That embassy... and those men in ties with the walkie talkies! And ...it smells funny in there - there was no air. I don't think you should go back to that building Charlie. That building is no good for anyone."

"You don't have to go Jackie. I'll go by myself. I need to talk to the doctor. I have to go over my test results."

"How 'bout - I'll help you get in the cab. Okay? Oh. I'm a bad person. I should go. But Charlie I'm telling you that place is no good!"


__________________


When I meet Jackie in my lobby an hour later, she greets me at the elevator with her coat on.

"I'll go."

"You don't have to go Jackie."

"No, I'll go. It's ridiculous. I'm a baby. An infant! I don't know what's WRONG with me!!"


____________________

Our cab driver is quiet and gracious and fat and wears a beard and a large white turban.
His cab is shiny new.

We drive and I take pictures with my father's camera.








Jackie promises me that she'll be good. She won't say a word to the doctor. "Like Barbra Streisand in Funny Girl. You know?
Nicky Arnstein... when he's playing poker? I'll be Barbra Streisand and you'll be Nicky Arnstien playing poker."

________________________

Patients Medical is packed. We only wait a few minute minutes.
We pick up magazines from nearby tables.

Jackie informs me the National Enquirer has recently won the Noble Peace Prize.

"Jackie" I say "I am quite sure the National Enquirer did NOT win the Nobel Peace Prize."

"Yes, yes they did. For the coverage on Tiger Woods and John Edwards."

"Not the Nobel!"

"Well some sort of prize."

Jackie always makes me feel so straight and erudite.

__________________________

They're ready for me.

The same male nurse (as always) escorts me to a small room to have my vitals checked.
This nurse is Hispanic and short with a nice grin. He seems a little sad to see me with the walker and the helmet. Usually he's kind of flirty and chatty but today he casts his eyes down. His energy dimmed.

I am weighed. Not bad. 136. I've dropped 20 pounds in two years but I've been hovering in the late 130's these past few months. My blood pressure is checked. A little high, but also not bad.

Jackie is already in protest mode.

"I don't think your blood pressure is too high. Everyone is different!"

The male Hispanic nurse says, "Your friend is partly right."

____________________

Dr. Bombay is ready for me.

Before we go in I say to Jackie, "Remember ... NICKY ARNSTEIN."

As we stumble into Bombay's office (a funny and mismatched pair) I catch a quick close up of Dr. Bombay looking sad as she sees my walker.

"How are you? Is this a relative?"

"I'm a neighbor, Jackie"

"Nice to meet you Jackie."

Dr. Bombay is rounder today (later she tells us she's pregnant with her third child) and tall and ethnic and scattered and pretty and definitely has ADD.

What is it about people in the medical world and ADD? They can not hold onto a cohesive conversation.

"So how are you? I must say, you seemed to have fallen back since the last time we met."

"Well, my father died, my mother just had a stroke and I recently fell and knocked out a tooth."

"It's been a rough month" Jackie concedes.

Dr. Bombay (a holistic doctor) begins the kind of banal speech you might expect from a local minister. She offers her philosophy on death and mourning the dead. I let go and enjoy and listen. You never know when you might hear something new, something that might really work for you.

"I for one don't believe that we ever die. It is really the people left behind who suffer, not the one who has died. It is important to mourn. But not for too long. It would be odd and wrong to not to mourn or suffer for a period of time. But it is important to move on. It is important to heal.
I can tell. I understand that you are very close to your parents and this is hard for you."

I nod. I am close to my parents. But her guesswork seems invasive. I've never discussed my parents with her. I want to sort of be the kind of person who goes with the program so I remind myself that Dr. Bombay is working holistically. (On the ride home, Jackie said she felt like she was listening to a gypsy - a gypsy looking into her little crystal ball!)

We move on to my tests.

And the thing is about Dr. Bombay is, she remembers things wrong.

We talk about chelation. I tell her that I felt drained afterwards.

"See, I told you! I told you not to do this."

"No, Dr. Bombay. Ever since I've come in here you've been suggesting chelation. I asked you last week and you gave the order to the nurse."

"Yes. But you were stronger when I was recommending it to you. You are in a weakened state. Once you are stronger we should continue the chelaltion. And we'll do a less invasive chelation."

(But what about last week? We talked last week. I let it go. I get lost her in her endless words - her thick delicate accent that I can't always make out).

I tell her I'm worried about the lead levels on my recent tests. And that the Ayurvedic Oil she recommended and I've used - I googled these Ayurvedic treatments - and there have been reports of high levels of mercury and lead.

"Not from the brand I recommended"

"I ordered a different brand off the web."

"You see? I told you not to order over the web."

No she didn't. I am quite sure she didn't. But I don't pursue this. It is all so scattered.
In any case, as it turns out, the brand I bought is a brand she recommends anyway. And I had emailed the company and they were resolute about their purity and testing.

We talk about other test results. Turns out I have a good gut. I have a particularly good gut she tells me. I am lucky. And no food allergies.

(And I think to myself - I am so blessed with good health - so many good things were given to me- I am extremely healthy in so many ways - except for having this neurological disease.

Back to the tests. How could I have such high levels of lead?

She tells me that this test might be lopsided. That we should do a simple blood test. I've already done a simple blood test. Now she wants another? It's like she can't makes sense of the papers and reports that clutter her desk. And I'm too weak and scattered to make sense of them myself. So she turns her confusion into a beautific smile and suggests more tests and I nod wanly and say, "okay, lets get another test."


Jackie (as promised) has kept her mouth shut but can't resist making sour expressions. Dr. Bombay, I notice, checks in with Jackie (ever so often) and I don't have to look at Jackie - I only have to look to Dr. Bombay - to know that Jackie isn't like what she is hearing. Dr. Bombay looks uneasy whenever she glances over at Jackie, like she's resisting the need to mop her brow.

At one point, Jackie boldly grabs Dr. Bombay's business card from her desk, stuffs it in her purse and then looks vacantly at the nearby wall.

I talk and listen - my ALS energy unwilling to (take on) the angst of Jackie's impudence.

Dr. Bombay and I come up with a plan for IV'S. No more chelation. And then a possible home chelation when I get stronger. (I love this idea that we merely need to wait until I get stronger, like I don't have ALS but some tiresome flu. I think that's why I like seeing Dr. Bombay).

Before we go Jackie says, "Doctor, can I ask you a couple of things."

"Why sure Jackie."

"Is it possible to take too many vitamins, to poison yourself with too many vitamins?''

"Well, yes it is." And Dr. Bombay goes into a explanation about the difference between water and fat soluble vitamins."

"And let me ask you this. What do you eat to build muscle?

"protein".

(Jackie wants me to drop the vegetables and eat meat and cake).

On the way home we get into a fight, or as much of a fight as I can conjure.

The one problem I habitually have is an acidic system.

"I tell you stop Charlie! Stop with all that citrus. No wonder your acidic!"

"No, Jackie, ironically lemon is very alkaline. I know it tastes acidic but it works the opposite way in the body. It's meat and alcohol and refined food -white flour! that causes acidity, not citrus."

"Well that's the first I ever heard that! Then how come my mouth gets all sour and acidy when I taste lemon. Huh?"

"I don't know. I don't know."

And I don't know. I can't figure any of this stuff out. All I do is spew out little factoids that I don't really understand. It's like trying to learn a secret code in which (later) all will be revealed.



Thursday, March 11, 2010

cab


cab
Originally uploaded by Charlie Roberts

cops


cops
Originally uploaded by Charlie Roberts

Taxi


Taxi
Originally uploaded by Charlie Roberts

Beckett Beckett Beckett

Blue Skies -

Hope you're enjoying Brooklyn. I like the sound of a farmers market. I get my food delivered from Urban Organics out of Park Slope. It's pretty good and reasonable.

Very cool about your son and his recording business. Jealous. I love creative enterprise.

I'm okay. I've been doing all these tests (food allergies, gutt, hormone) to see if there is anything wrong with me and unfortunately I am extremely healthy, except for this neurological disease thing.

However, I have lost weight. In October 2008 I weighed 152 and now in March 2010 I weigh 138. I eat. But I haven't been doing the ice cream and the cake every day- kind of stuff. I am pretty thin except for this very unattractive small round stomach. This is sad to me.

I have my appointment with Beth Israel Monday afternoon and I'll talk to them about it. Fourteen pounds isn't terrible. Right? Ugh. Eating makes me tired. My idea of a eating is coffee and wheat thins.

And I've been wearing a bike helmet everywhere because I'm worried about falling over and hitting my head. I look odd but I kind of think its the right thing to do.

* (A woman on PLM died yesterday from hitting her head)

I might go back to Florida next week because my Mom is sick (stroke)- I pray she's okay.

Rains it pours.

But,

This is cool. I signed up for TAP through TDF. Broadway orchestra seats (on the aisle) reserved for the disabled. Tickets around $24 each - you get two!

And I finished Gatsby and starting a Beckett novel. Everyone insists I read Beckett.

Peace in the middle east,

Charlie_Roberts


Tuesday, March 9, 2010

Pedicab Central Park


Pedicab Central Park
Originally uploaded by Charlie Roberts

salad


salad
Originally uploaded by Charlie Roberts

MOONSTRUCK side salad

9th


9th
Originally uploaded by Charlie Roberts

TICKET

MOONSTRUCK

PEDICAB

La Caridad

BASEBALL PLAYER

I climb four simple stone steps and I sweat.
Jay and Guy heave me up, one stone step at a time like I'm wounded royalty. I disappear. They strain.

"Sorry about that" I smile trying to lessen the spectacle,
"sorry for having to lean so heavily on you but lucky for you, I'm skin and bones."

There's no hiding it. I've lost body mass. My progression is naked for all to consider.

"Not at all, not at all, it was easy, it wasn't a problem" offers Jay.

"Really! Actually VERY easy. Don't worry Charlie. No worries" chirps Guy.

And I let the spectacle go. I let it go with ease which is surprising to me because I've always felt rattled watching the disabled lifted.

I let go of my indignity -I made it - and now I make conversation -the recent past gone - pop!

Here I am.

I adjust my stance and see Kate - I see her fear. She snatches it away and replacing it with her charming apple cheeked smile.

"You look great!"

"I take a hundred vitamins. I should loo
k great. My skin has never been rosier."

"You know you should tell Guy what you're taking. He has this thing about his skin. I think it's silly but he'd probably love suggestions, I mean healthy skin suggestions."

____________

We gather in a loft in a tired building on West 26th Street near 7th Avenue.
We lie on the creaky wood floor and move about and sip tea and follow guided writing instructions and yawn and stretch and feel protected in the cave-like loft - unreachable -a delicious escape.

When it's time to read my piece I hand my stapled papers to Guy and ask him to read them because my tongue gets too tired trying to articulate more than a paragraph of words.
I ask Guy because Guy has a lovely British accent. (He's from Bermuda or Jamaica or New Zealand?) I can't remember but it's satisfying to hear his rounded vowels and cutting consonants making their way through my personal rants.

________________________








After lab, Mattie drives me home and I find CAR waiting in my apartment. She sips red wine and listens to NPR. It's Saturday night, I sip wine and watch Car saute and simmer. We make plans.


She's brought paint supplies to paint my bedroom green but I am zonked.
My mother has had a stroke and I am on tender hooks.
My mother is at the hospital now.

We sip wine.

CAR hangs new curtains in my bedroom. They're from her dining room

CAR is funny.

She hangs three of the curtain panels up and without a sigh of angst decides she's lost the fourth panel and will have to send it to me later. But the fourth panel lies clearly in the middle of the living room floor.
I tell her she hasn't left it behind it "there it is" and she picks it up without a second thought and finishes the job.

I appreciate her creative will and I like her taste. Her taste is different than mine. Her taste can be more obtuse yet refined. I enjoy mixing things up.

The curtains look Hollywood-ish and extravagant but functional. I'm an actor - I like my apartment dressed in different ways. So I will enjoy the Hollywood drapes (for a while).

___________________________

The next day we buy an end table from Pottery Barn. I need a table with drawers near my couch and my bed. I have become quite specific about what my needs dictate. And every week I seem to need or crave some very specific prop, a plant, an umbrella-cane stand, a pencil jar.

The Pottery Barn salesman is very young and cute and probably gay asks how many end tables we want... "a hundred?" He thinks this funny and because he so droll and sassy, it kind of it is.

CAR thinks that I look particularly handsome today and that the salesman is interested in me but confused by my walker. This is great news to me but I kind of doubt it.

The price for the table is $160 but there is a $30 delivery fee and delivery is mandatory.
This drives me CRAZY.

"Then the price is $190 not $160!" I rant to the childlike salesman.

CAR has to calm me down at check out like I'm the quick-tempered bread winner of the family.

__________________________

We eat at La Caridad on 78th and Broadway. We have a feast of fried plantains, pork chops, chicken, rice and beans and avocado salad. My neighbor Bruce knocks on the window.

_______________________________

We take a pedicab through the Park. The air is perfect. The driver (from Africa) begins a patter I've heard before. "Old money on the east side, new money on the west side. Only the rocks are indigenous, Ghost Busters was shot there, etc."

Mid-ride, CAR spots a bouncy short man with shiny dark hair walking with a black teen ager. He is cocky and super short- weirdly short.

"I think that's Tom Cruise" I say.

CAR is not convinced. "His body is too weird."

"I know! I think Tom Cruise has a weird body, or, that's what I've heard."

Tom Cruise and I are the same age and I have known this since he did RISKY BUSINESS and I have often insanely compared my career to Tom Cruise's because of our nearness in age. And so today I glumly consider my life versus Tom Cruise's. I am down - way down. And Tom Cruise with his short odd body and terrible movies and money and stardom... hums along.

______________________________

We watch the Oscars at Jackie's. We watch on Jackie's dated color TV in her spotless empty apartment. CAR has carried glasses of Prosecco over but Jackie has prepared coffee and croissants.

I choke on pop corn. I have to spit up. I can't breath. My adrenaline guns.
Jackie and CAR wait it out. I picture dying in Jackie's apartment.

____________________________

The Oscars seems lifeless to me but I get weepy when Sandra Bullock wins.

______________________________

The next day we meet COLE at the Moonstruck diner on 23rd and Ninth. I insist we sit in the middle, not near the window. I have very specific likes and dislikes and CAR allows for this.

We talk, we blab, we gossip. Car says she feels like we're on a TV show and I know exactly what she means.

And then I choke on the salad. I have to spit up. Cole and Car sit in silence. I can't get air down my throat. I imagine an ambulance and sirens surrounding the Moonstruck Diner. It passes. I notice Cole barely touches her food.

________________________________________

I haven't been to the Moonstruck in years. I used to go all the time. They still know me there. A waiter appears from another section to say hello.

"I haven't seen you in a long time? How are you?"

And because I've made this reappearance with my walker it occurs to me that he is saying hello to me - that he is talking to me because of my frailty and my long walk down the middle of the diner must have alarmed him.

"Oh. I'm hanging in there. Doing the best I can."

He kind of blushes. He is genuine. He looks like he's really fond of me - of our history together.
I barely remember him. I instantly reassess my past and consider that the odd New Yorker might have an affection for me - because I've stuck around so long - seemingly lost - I have unknowingly become part the local fabric to some New Yorkers. I feel famous.

The waiter leaves and CAR says, "that was nice. That was REALLY nice"

"Well, I've been around here for years. The odd waiter, the stoop dwellers- they know me."

___________________________________

CAR and COLE and I drive to the plant district to buy some trees for my apartment. I have this idea that If I look at healthy green, I will become healthy green.

Cole pulls up to a store. CAR runs in to see if it's viable. I can't walk around so we have to chose a place wisely. Cole and I wait in the running car while CAR runs up and down the sidewalk. A cop comes from behind and stuffs a ticket through Cole's window for $125. I am so livid that I almost cry.

________________________________________

CAR and I spend the rest of night clearing space in my apartment and she does all my laundry. I haven't done it for weeks. I empirically lie on the sofa and CAR sweats it out picking up dry cleaning, cooking dinner, gathering groceries, wiping down counters, petting the cat.

When we begin decluttering,

CAR wants me to follow the rules she's learned on the website FLY_LADY. When you come upon some thing your supposed to either move it, save it, or toss it, or ... something like that. The rules were too hard to follow. I can't remember the right phrases. We get through it without Fly_Lady.

_________________________________________

After dinner (which was delicious), we sit on the sofa and get into a heated discussion about my attitude - about help - and about my vision of the role I played with this disease.

I tell CAR a story about my father's wake.

_____________________________


An old couple, the Tates (let's call them the Tates because they look like central casting from the New York Ad world circa 1965) the Tates came to the wake. I hadn't seen the Tates in maybe thirty years. They lived in Connecticut but now live year round in Naples. My mother told me Mrs. Tate has agoraphobia. This is why we haven't seen her in her thirty years. So it WAS nice of her to come to the wake. Oddly enough, Mrs. Tate's a psychiatrist.

When Mrs. Tate approaches me she is soft and warm and also odd. She asks me where the years have gone. She can remember me quite clearly thirty or even forty years ago. She tells me that we have to appreciate each day, every moment, be grateful for today. This makes good sense but Mrs. Tate is being so tender and kind and I begin to wonder if she is talking to me or talking about the loss of my father?"

It's too much for me so... I ask,

"Where's Mr. Tate?"

Mr. Tate spins around from nearby grips my hand firmly and smiles, "Charlie! So sorry to hear about the Gherigs!! And you didn't even play baseball!!"

Ugh. (By the way dude, I DID play baseball. Four years in the Bantam league).

I was so angry. I was so angry with my father. The Tate's were my dad's friends not my mother's. My father told them. Funny. My father and I never discussed it.

I tell them "Don't worry about it! I feel great! And you know what? I'm not sure what I have... because there is no accurate way to diagnose these things! So don't worry about it" I said.
I might as well have been bearing my teeth. I was flushed and pushy.

"Good for you! GOOD for you!" say Mr. and Mrs. Tate.

________________________

"Charlie" CAR says. People don't know what to do? They don't know how to act."

"Well people should mind their own business. THAT's the right thing to do. Don't bring it up unless I bring it up."

"How can you be so sure that that's the right thing to do? Some people want to have it brought up, some people want to feel sympathy and empathy. You talk as if it was your fault. That you don't want to be faulted or blamed for the disease.

Is that what you think? Do you think that this is somehow your fault?"

"CAR, people look away when they see me. Because it's too hard to look at."

_____________________________________

The next morning CAR gets up and races around my apartment finishing chores, making last minute adjustments and then she brings me coffee in bed. I'm certain she'll miss her bus at nine thirty but CAR wants to do one more load of laundry. CAR is driven. It's impressive. I don't see how she can swing it.

She manages to get out of the apartment by five (or ten) after nine. It seems doubtful she'll make it. I tell her I'll stand by my phone and look up things on the web and she can call me in case she misses her bus and needs alternative travel plans.

But in about twenty minutes CAR calls and says, "I'm on the bus."

This is incredible to me. But I say, " this is bad because this will reinforce your tendency to do things at the last minute. You'll think you can get away with it."

"Not a chance" she says " I once missed a flight three times on the same day.
But anyway, I made it. I'm on the bus. And the cab driver was really cool. The cab driver told me my fortune on the way over. And he was right!"

"What he did say?"

"I'm sitting on a crowded bus so I can't really talk about it right now but I'll tell you later."

We hang up and I look across the room and see CAR's bag leaning against the toile chair.
I wonder if that's what the cab driver told her.


Monday, March 8, 2010

9th


9th
Originally uploaded by Charlie Roberts

Naples


Naples
Originally uploaded by Charlie Roberts

West 26th NYC


West 26th NYC
Originally uploaded by Charlie Roberts