LETTER

Hi Mr. Roberts,

I have the letter ready for you. Where would you like us to mail it?

Ranjan, MD

LISTS

At work, Joe McGregor (a guy I really like) talks to me about the house he has bought 90 minutes into Long Island.
Our talk begins at the water-cooler and ends at the printers.

Joe is round like Santa, but he carries it well. And since he got married, bought the house, and had a baby, Joe looks handsome. (His baby has Down Syndrome) Joe is a grinning proud father. He can’t wait to get take that 90 minute commute back to his wife, daughter and new house. (you can tell)

This is a good man.

On our miniature walk through the office, he tells me about his unruly dog, and a niece that has been crawling out of her crib and almost out the front door.

This baby has wanderlust.

My parents had the same problem with me. I ran away from home (a lot). When I would run away (I think) I even carried a long stick with a bandana sack tied to the end (like a hobo).

I learned this look watching TV. "Petticoat Junction", "The Beverly Hill Billies or "I Love Lucy".

TV taught me everything.

Later, Joe brings over a list to my cubicle. Joe likes to include me in (his part of the office) activities. (His part of the office) has downloaded a list, a top 100 MOVIES list from the web.

"Charlie, we're passing this around because the list is so lame, add your own."

Joe assumes that I’m a movie nut because I’m fey and an actor. But my brain is years and years of training my creative instincts, not honing names and references.

I am at a loss for these kind of things.

What actor motivated you to become an actor? What play changed your life?
Your top five novels.
Three roles in Shakespeare that you gotta play.

All of these (kind of things) allude me.

Without looking at the list, I'm able to come up with a few, but I notice they’re already there.

Annie Hall,
All About Eve
Blow Up

But as I work at my cubicle, I’m able to add to the list (in clean block print).

Bringing Up Baby
Breaking Away
Easter Parade
His Girl Friday
Mildred Pierce
Night of the Hunter (I'm reading about the making of that film)
Philadelphia Story

and...

The Umbrellas of Cherbourg (a film I've never seen, I put it down for effect)

At my professional break time, I stand to return it to Joe's desk and notice that this list has a subtitle.

White print on a black rectangle,

"To See Before You Die"

(as if on a tombstone)

100 Movies
"To See Before You Die"

Now I am more curious about the list. I make a Xerox copy of it and decide to tape it to the inside of my medicine cabinet-door (at home) for easy access.

And I check the official list (more carefully) to see which films are missing from my own history.

And I anxiously ponder, standing by my desk quite still, my mouth ajar, my brow closed (like I’ve forgotten where I left my keys)
Are seeing certain movies so important that watching them can change your life? Can missing a film (that you should see) change the very course of your life? Are these 100 films that I must see before I die?

I consider how films (and TV mostly) have duped me into believing life should go a certain way.
As a kid, certain stories crawled into my head and lay there (quietly).

As my life proceeded these quiet stories interrupted the viewing of my own reality, making me compare my cold, scattershot life to the warm, glowing inclusive stories enacted by Jimmy Stewart (movies) or Florence Henderson (tv).

This morning, I called Medco Insureance about the cost of taking this drug for my terrible disease.
I did a minute of research on the world wide web about the effects of the drug. (liver problems)
The web rattled out to me (carelessly and bluntly - an uncouth loudmouth) that most people (with this disease) have a life expectancy of three to five years.
It gets people in their forties.

It was like being bitten buy a snake. I recoiled from my monitor and keyboard.

I stood up.

I walked away.

I found my breath.

I shook it off.

MY FEET TODAY

FROM RANJAN

Mr. Roberts,

I got your message regarding these issues and apologize for the delay in responding. I will look into the insurance issues and let you know how we can be of help.

Sincerely

Ranjan, MD

PT TO THE STARS

Hi Charlie...

Shmuel's great...unfortunately most people very quickly find them pass
of to other therapists, some of which are good and some not so. IF you
do find yourself handed-off, ask for Valerie....he's great. Tell Shmuel
Mary sent you. Below is a great article about Shmuel from the
NYT...He's moved from Carnegie Hall and is now on West 60th...see the
attached link.

Good luck!
Mary

THE DRUG

Charlie,

The name of the drug that Dr. Mitsumoto prescribed is rizuole AKA rilutek. It extends the life of a person with ALS by a few months, but only if they begin taking upon very early onset. That is why he wants you to start it, just in case.

The phone number to find out about receiving financial assistance with it is 1-800-745-8835.
Check with your insurance to see how much of it they will reimburse.

You should get all your info so that you can make a decision ASAP.

And, by the way, maybe you should give Shmuel a try. What do you think?

xo

sister

HELLO DR. RANJAN

Hello Dr. Ranjan,

Mr. Chalie Roberts here.

I contacted my insurance company about getting therapy for my issues.
Specifically, speech, physical and acupuncture.
My plan only allows 8 to 12 visits total per quarter unless I get a letter from a Doctor
saying that I need more.

Would you or could you write that letter for me?

I hope all is well with you.

Best,

Mr. Roberts

PERFECT COFFEE

Sunday morning, I bike to the Christian Science Church in SOHO on Wooster Street. The streets are (cobble stone?) and (whenever I'm down there on a Sunday morning) I feel like a tourist investigating a unique and untravelled neighborhood.

The church is (temporarily) installed in a glamorous store front right next to the likes of
"Patagonia" and "Leafe" (a monstrously overpriced furniture store).

The service is plain and direct. One reader reads from the bible, the other from Mary Baker Eddy.
The people (around 40 of them) are plain, good looking folk and because we're in SOHO, it feels like
everyone is rich.

I sit in a pew after my tiring cobble stoned bike ride and drink it all in. My eyes shut. My ears open to
any ideas that will correct my situation.

And ideas come forth.

I am told (in brief) that the material world is not real. The only real work is spiritual. Disease is a material idea of man.
Disease does not exist in the spiritual world or in G-d, so it cannot exist with spriitual man. Once you see this, that the only everlasting reality is G-d, and G-ds' love, (which is every where) your disease will cease to exist.

I speak to one or the reader's after the service and to a woman sitting next to me (she lives on Beekman place and looks rich)

They ask me about how I came to be here. Where I live. They talk about the new Church being renovated on Macdougle.

I tell the reader that I'm a little overwhelmed by these ideas and he says to remember that they are very simple.

I feel like I'm rushing a fraternity. I'm not good at joining groups but I often feel that way so I don't let it bother me.

I pick up some literature in the adjacent library. I select the monthly and weekly readers. I read testimonies of how illnesses were reversed, broken arms repaired. None of the illnesses are as intimidating as my undiagnosed terrible disease.

But it is a beautiful, sunny Sunday in SOHO and I parade my bicycle to CAFE CAFE and have coffee and a sour cream muffin and read Michael Musto's column in the Village Voice.

(I learn that the movie "Catch Me if You Can" has been turned into a Broadway musical with Tom Wopat playing the Christopher Walken role.)

The high from the coffee and muffin and the headiness of SOHO on a clear, Sunday morning informs my brain cells, and Mary Baker Eddy catches up with me.

I decide how I am, I am a reflection of G-d . G-d is perfect. I am perfect.

OOPS!

I fall at the office.

PLAY HOUSE

At my day job on 29th and Madison, they ordain one person, one of us, (one of us part timers) to over-see our part-time operations. The over-seer decides specific break times, dress codes, comments on one's handwriting, quotas, allocations, allotments, allowances apportionments and assignments.

I bristle but nod in agreement.

All of these rules are play acting. We're playing house. Or office.
I'll play the boss and you play the worker.

I enjoy tedious work.
In fact, I escape in work. Boring work is good therapy for my troubled mind.
But do you want me to do your mindless work or concentrate on your pointless protocol?

Today, I bring my lunch to work so that I won’t have to hunt and gather during my new professional designated break time. But I get an e-mail from my bank. A check has not cleared. A check has been returned!

I walk to the bank on my professional designted dinner break.

As I walk to the bank, it must appear like I have all the time in the world! I'm so unrushed!
I'm walking so slowly that when I pass a co-worker on the street, I put my phone to my ear (so it appears that I’m talking to someone) to cover my loping dopey walk.

My walk to and from the bank would normally clock in at twenty minutes. Today it takes my entire professional designated break time.

When I get back to work I sit in the office kitchen and eat my dinner and read the New York Post.

I read; A.I.G will have to return their bonuses because the IRS will tax them at 100%..

But am interrupted by,

"Wow! All the four food groups" young handsome dark-skinned Iranian Jason comments.

(We don't talk normally but commenting on other people's food is easy entrée)

And then, my new supervisor enters the kitchen.

I stiffen.

I don’t know what he’s about.
Why HAS he taken this role on?

There is something dark here.

He is from Scotland and stifles his accent. He wears black shirts with floral ties. He is young and bald and his eyes have the steeliness of Sir Ben Kingsley when he plays one of his more demonic characters.

"Ah! Mr. Roberts, I see you eating your dinner, now, don't I?

"Yes, this IS my dinner. I'm just finishing up."

"But the time Mr. Roberts, the time."

"I know it's past six but I'll be done in just a bit"

"Ah Mr. Roberts, we all take our breaks at the same time, that's the way we do things now."

(He's being tongue in cheek, but the badgering, it never stops. It's tiresome.

"I know, I know" I say, " but you see, I had to walk to my bank during my breaktime and I walk at like... 2 miles an hour"

(this IS what I said but it occurs to me NOW that walking 2 miles an hour is actually okay)

"I'm having leg problems, leg issues, and it takes me a long time to walk ANY where, so I used up my entire break walking, This is why I'm late for work some times, because I have to see doctors or go to the hospital for some tests for something to do with my legs. So I can't get done what I need to get done on that new break, not with the way I walk, I just cant' do it."

I'm a defensive teenager and I’ve stood up and began to wrap up the remains of my healthy, dismal dinner which included carrot sticks, baby potatoes, (week old) beans n' rice, half an avocado, and rice crackers.

My supervisor wasn'r ready for this unleashing. He is concerned.

"No, It's okay, it's okay,"

And disposing of any emotion I say, "I'm not trying to make you feel guilty or pull a little surprise gotcha! on you. I'm just telling you the plain fact that I can't get to my my bank and eat my dinner on one fifity minute break because I don't walk fast enough."

"Sit down Mr. Roberts, sit down, I think can make an allowance for you, I think I can let this go. I didn’t know."

"It's okay, I'm done here any way." (I'm playing it very flat here.)

"No, I think what we should do, ( my supervisor says) I think what we should do is that YOU should sit down and finish your dinner and come back to work when you need to. You don't need me all over you right now"

(That was a nice thing to say (I guess) and okay I’ll sit down. Even though I am done. Really.

(I’ll play house... or office)

So, I sit down at the white plastic table, with the matching white chairs stacked in twos and threes, (the kitchen doesn’t get much love) and I think, I don’t want to have conversations about my terrible undiagnosed disease, but I'm afraid and frustrated by what I can't do anymore. This is what I am unleashing (I think). I'm not so angry with my supervisor, I'm angry at the small and developing realization of my (brand-new) IN - abilities.

I haven’t looked at this, can't look at this.

My angy realizations come out in child-sized bites.

COOL KIDS

This morning before work, I bike to West 21st Street for a voice-over audition.
It's for Lowes Hardware.

I'm not really sure if I should go. My ability it articulate words is different each day.
But I was requested by the producers.
Maybe it will be easy, a goofy son buying flowers for his Mother.

Going to these audition studios around the city is always the same.
There are multiple auditions going on.
In the voice over world (if you've been around a while) you know every person in the room even if you don't know their name.

And, you know that your agent has been neglecting you, when one or two actors give you a warm hello! with a look in their eye that says, you must have been out of town on a job? you've been in LA, right?

This happens to me today. Normally I would be buggy about this but these days, I feel like I'm eves dropping in a world that I may not be a part of (soon).

Today, there are auditions for Lowes, for American Express, for AT&T and others.

The audition areas often feel like a cocktail party without alcohol. (Or for theatre graduates?- when you're in rehearsal for a show in school, and during break you come out to have a smoke in the lobby with the other shows that are in rehearsal, the other show folks) -you know?

Everyone feels chummy. It's a sliver of a rare community in New York.
It feels good to be apart of these little parties.

No-one know when they will be, or who will show up.

If there are fifty people in the room, I've done a spot with twenty-five of them.
(I've been in auditioning for commercials in New York since 1975)

I'm not so great at these parties.

I'm a problem reader so I have to spend time staying focused on the copy.
If I work on the copy and then start talking to someone, and my name is called, all my preparation is lost.

But I'm an old timer, an old timer with a worried youngish face.
I'm good once you get me oiled up.

Actors are grinning and guffawing and talking about our unions and recent movies and TV.
These show folk don't talk theatre as much.

They all, have always seemed... so much more successful than me.

When I am there, in the waiting room, this fever comes over me, this need to succeed, to win this job, to win MANY jobs. It's like a gambling addiction or walking into a party and having a beer and knowing immediately that you want six more.

When I'm away from it, I don't care about it. But when I'm there, I want to be in, I want to be with the cool kids.

And I am! for a tiny part of this Voice Over world.

I see Steve B. from college days. We did an episode of "Spencer for Hire" together. Steve was a good looking kid who has aged like he had a bad blood disease. I mean... for years I thought it was alcoholism, but now I don't know why he looks so tired.

Then there is Thom S. who carries himself the same ways he did in college, like he's an S.A.E and doesn't really have to lift a finger to do anything. Just grin and keep it easy. Everything is easy.

There is Tim P. married and full of humor and a little unsure and can't ever remember my name (fine by me) so he calls me the character name I had in a spot we did together years ago. This joke is dull and I get a bored look when I run into Tim.

There is Amanda who I have partnered with for many spots but is the kind of girl that wouldn't be seen with me in High School.

These are the cool kids.

after diagnosis

Sister,

Thank you  or being there for me for a great day,
A  day which illustrates that everything is relative.
Who knew that one day I would be thrilled to have JUST an undiagnosed disease.

To celebrate, I ate 3 pieces of pizza  (and noticed my heart beating in my ears at work later.
So, pizza IS going to make me feel like shit.  And so it goes.)

Thank you for taking this on. I feel uncomfortable and resistant (to you or anyone else doing that)... that's my nature.

I felt elated at work. I know it's temporary. No one said I was fine. Still, it felt good.
I gave Ashley 9my annoying supervisor)  some M & M's,

And thank you again for the cat food and litter. That is a big relief. It's so hard for me to keep stocked. The cat knows when I'm running low and starts to madly run around in circles.
When the apartment is clean and everything is well stocked, the cat calmly presides.


- Charley


Charley,

I am very happy to be there for you.  For me, it is what must be, because my life is nothing if I cannot be there for the ones I truly love.
And for me, you are one of those.

Your friend Penny doesn't sound nuts.  Are you sure she didn't say EEG on her skull?  Maybe that's what she meant.  That is probably what she had done.

I also felt an enormous relief last night.  And today, it was really hard to go to work as I just wanted to hang out, as if it were a break after writing a big paper.

It is definitely true that you cannot live your life by the numbers (statistics).

It is also true that our bodies will provide information to us about what we need to attend to, what we haven't been able see or feel that we cannot look at in our lives, or just what IS in our lives.

An interesting book on this is "The Alchemy of Illness" by Kat Duff.  A very interesting book.

Tibetan Buddhists believe in kharma, and that when you go through trying and hard times, you are working off bad kharma, and this is reason to feel grateful and rejoice.

So, anyway.  I'm really happy about how yesterday went.

When is your next appt with Dr. Mitsumoto?  Do you want me to come in for it?

Talk to you later,

Sister