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

HALLE BERRY

Today I have my diagnosis meeting with the doctors at Columbia Prsebyterian.

I dress for my diagnosis in a pink Brooks Brothers shirt (the color of health!) like I'm dressing for a dance.

Excited, hopeful, with the buried subtext of death.

Then,

I bicycle to the subway.

It's a beautiful day!

It's the kind of day that invites a margarita after work.
Cold, but sunny and hopeful.

At Port Athority (my subway stop) I confront the long walk to the A-train.

Walking is frustrating.
I want to be done with the walking.
It's that bad dream. You run and run but you can't seem to make any ground.
I can make my walk look normal, but it hurts. I walk at the speed of a distracted six year old.

On the A train, my face is creased. I catch a girl observing my dour expression. I won't change it.
I make various attempts at prayer. I'm not sure what I'm allowed to pray for. I try to recall the teachings of Mary Baker Eddy.
I try to picture myself being able to accept any diagnosis and prognosis. My body is perfect.

The 168th street subway stop!
There is an elevator and a set of stairs.
I can't remember if I'm supposed to take the elevator or the stairs?
(I don’t want to make the mistake of starting a laborious climb up three or four sets of stairs)

I stop a lady in her commute.

"Do I need to take the elevator to exit?"

Without stopping or looking at me the commuter corrects "the elevator goes down."

So, I climb the stairs. I grip the railing like I'm scaling Mount Washington and meet my sister at Starbucks.

Starbucks! The global lost and found.

My sister looks great. (She has cut her hair)
Her skin is pink and well structured.
She is dressed smartly (too many patterns for me) but nice.

My sister and I have the same instinct, dress up! Repel the the scariness of the day with fashion.

" You cut your hair!"

"I got the Halle."

She means "the Halle Berry" and like magic I see Halle Berry's face replace my sister's and my sister is exactly right, she got the Halle.

We smile and feel good like we're going to see a friend's recital or play.

But my sister's cafeened shakiness, and my unwillingness to sit down, betray the life changing appoinment about to happen.

I'm late and I know it will take me a full 15 minutes to walk the three blocks east to the neurology building.

I think of Masterpiece Theatre on our way there.

We might be Kate and Nicholas Nickleby stuggling through Piccadilly Circus.
All the committed extras walking the crowded streets! Hotdog venders blocking the way

In the lobby, we try to get our passes from the young female African American security guard.
This is a different securtity guard than usual (I notice).

"We're here for Habib, Dr. Habib" I say.

The security guard's finger slides over a list of names that are glued to cardboard wrapped in plastic.
The security guard is having trouble finding the name.

"Um, try Mitsimoto." I offer.

Again the nervous finger up and down the card.

My bossy sister takes over. She leans over, cradles the card upside down and finds the name.

"There it is, Mitzimoto, 9th floor!"

I would be annoyed with my sister but I need to stay focused.
The security guard is relieved.

"I don't think she can read" my sister whispers.

We step into a slow poke elevator. The slow poke elevator allows you to contemplate your pending prognosis, and those of the haunted patients around you.

We get off and I check in at reception and my sister goes to the bathroom.

"Down the hall to the left I say (I've learned the lay of the land)

I sit in the reception area and notice that today feels different.

It's clinic day.

There is a hustle and bustle to the place; other patients, therapists, dietitians, visiting fellows and doctors.
Closer to what I would expect for my disease of the week TV movie. "At First You Fall" or "Falls and Whispers"

An older couple sits with me around the water cooler. They sit on separate sides so I'm not positive they're together.

The man is waspy, tall, in his late 50s'. He has a lean jauntiness that makes me think business man, mad about gulf, caring and comunicative husband. He was a catch.
He has money and lives in Larchmont.

A smiling Asian nurse or doctor enters carrying paperwork.

Now the woman speaks.

"Doug walks the long streach from the garage to the street every day, it's something he enjoys but I'm wondering if he should be taking that on?"

The woman is elegant, sweet and pretty (superb casting). Neither seem tramatized by where they are.
They are relaxed and polite, like their asking their ballroom teacher, "just how many sessions will we need before we can dance a decent walz at our daughter's wedding?"

I compare myself to them. My system is nervous, my attitude, rebellious.

Doug (I notice) has drop foot (like me). There is strap holding up his left foot.
Curious that the disease attacks just one foot. His is his left. Mine is my right.
I steal a picture of Doug's foot with my Iphone.

I also notice that when Doug talks, his voice is like mine only worse. Smoky, high, and slightly garbled.

Above Doug's head there's a painting of Lou Gherig.
(The painting is there to remind the staff that this is the man who is supplying us with our income) I think.

Lou Gherig smiles out in muted pastel oils.
I don't know anything about him.

To me the name "Lou Gerhig" instills fear.

Gherig: the legendary all American baseball hero brought down by a vicious disease and then his name becomes synonomous with the disease.

As if Parkinsons was called Michael J Fox's disease.

Doesn't seem right.

And the sound of the word! GheriG. The beginning G and the ending G. Scary. Just saying it will give you the disease.

My name is called and I'm weighed in. I've gained two pounds!

(See? I'm fine. I knew I was in the wrong place)

We sit in white room with florescent lights and an examining table.

"The same table where I got my spinal tap" I tell my sister.
I take a picture of it with my iphone.

The nurse tells us where to sit and informs me the doctor will see me momentarily.

"Will Dr. Ranjan will join Dr. Mitsamoto?" I ask.

Because of the bonding imtimacy of our spinal tap experience, I must feel like it's important that he be here?
(Ranjan never showed up)

My sister and I wait. We talk about things unrelated to the situation. But not too long.

Mitsamoto enters briskly in white lab coat and tie with an attractive European woman also in white lab coat.
The energy in the room changes instantly, like we've been waiting backstage for our favorite movie star.
Mitsimoto sweeps in with his handler and time is precious, so many fans to greet!
And in a way (I suppose) this is true. Mitsimoto IS a celebrated neurologist.

I stand to shake his hand and notice how much taller I am than he is, a tiny opportunity for power.

We all sit.

"Would it be alright if Dr Paris, who is visiting from Spain, observes our meeting? " he asks with his stagey Japanese accent.

"Of course!" I comply.

(This office is truly international. Japan, Pakistan, Ireland and SPAIN! all represented)

We make introductions and I introduce my sister (with the becoming Halle Berry haircut).
We could all be diplomats attending an intimate tribunal.

Mitsamoto begins.
He pulls out my reports and starts to review them.

I am prepared for the worst so I won't go into a spasm of grief and shock.

I am in suspended world. There is nothing before or after the words as he makes them.

He reviews all of the tests I have had since I began my adventure with a neurological disease.
Blood tests, MRIs , EMGS, more EMGS, more blood tests, a spinal tap and still more blood tests.

He tells me they have reviewed all of my blood counts, studied my various emgs. My spinal tap showed nothing.
My blood is normal.

He keeps repeating the word "normal" which to me is sounding bad because I am obviously NOT normal so I figure he's going to pronounce, since nothing ABbnormal showed up, I have two weeks to live.

He says that the weakness is only in my legs, NOT in my arms. ( I am happy with that because the neurologist at NYU suggested that it was)

He stops and looks up at me.

"So, do you have any questions? I don't want to proceed without your permission since the first time I saw you, you didn't want to be told certain things."

(I didn't want to be told what the disease was or why I was there)

WHAT? You're thinking. How could you go see a doctor and not know what kind of Doctor it was?!!!

I knew there was a nerological problem. I was worried that if I took on too much information in a short time that my brain and very soul would short circuit. I needed the diagnosis to come in chewable tablets, child-size mouthfuls.

So I saw a world famous doctor and I had no idea what he specialized in.

I am a queer one.

So, back to Mitsimoto.

"So, do you have any questions?"

I look at my sister and I say something or I ask something. Or she says something or asks something.

Dr. Mitsimoto answers that given these findings, AT THIS TIME, I do NOT have ALS.
I may get ALS, but right now I don't have all the signs that someone with ALS has.

I allow one bubble of giddiness to form below my ribcage near my gut.
My eyes change color.

The Japanese doctor stops and says,

"You look confused"

"I always look confused" (just keep telling me I don't have ALS)

He says that this is good news.
I DO have a neurological disease but of what kind he can't tell me as of yet. I may have ALS, but it is in the very ealy stages.

I see my sister taking notes with the ease of a stenographer.

And I feel like I’m sitting with a fortune teller ordained by G-D. You can't help but feel at the mercy of these doctors.The very language they use can change the chemistry of your body.

The drug.

He talks about this drug.
The drug cost $900 dollars a month.
It is effective with people who have the very, very, very, very, very early stages of ALS.
I might want to take it now.
So that if I do have ALS. I will be glad that I have taken it.

The drug extends your life by two months.

We meet with a PT for a fitting for my right foot with some kind of device.
Now I find my walk has improved substantially.
Two PTS ask me to walk the hallway. I spin on my heel and walk like a glib model.
I not only do not have a problem walking, I'm an exceptional walker.
My sister looks miffed and confused
My sister has looks skeptical.
You should have seen him outside "he was walking like Herman Monster".

I explain that I CAN walk inside but not outside. It's true! I plead.

The PT tells me I look great and I notice a swagger in my demeanor.
I'm liking the attention and now I've found a little of my charisma.

I’ve wearing a prop wedding band on the wrong finger. (from the reading I was in last week)

The PT tells me she noticed the wedding ring was on the wrong finger. She's smitten with me, I think.

We see an Irish nurse who re-explains the only available medication.

We see a dietician who is lovely and blond and sounds like Patricia Clarkson.
She offers the basics although she reiterates what Habib said. Do not lose weight.
Cholesterol takes a back seat to this disease.
She apologizes for not offering much help.

I get a prescription for a speech pathologist and for a PT. I'm feeling like I'm going to lick this thing.

My sister and I reemerge to what's left of the day. The afternoon light is crisp and golden. I feel light and punchy, like I just got away with something.

My sister and I test my outside Herman Monster walk. Turns out I lean forward too much.

We find her car and drive down Broadway looking for an exit for Riverside Drive.
I laugh recklessly and tell my sister,

"I can't believe the life I've led. Really something"

We talk about her hair. Clinique products. I feel a connection to my sister, to my family. Sitting beside my sister driving through the city of New York seems so familiar, like we are just where we're supposed to be. Just like the goofy good looking kid at the reception desk at NYU. My undiagnosed terrible disease seems far away, real, but smaller, manageable.

At my apartment, my sister gives me a three month supply of kitty liter and kibble for the cat.
I give her a shirt from Sundance. Sexy tight and robin's egg blue, waffle knit.

"It will wrap your nice breasts" I say.

"Yeah, what's left of them" says my skinny sister.

When she leaves, she hugs me, and kisses me on the cheek (with self conscious purpose). It's something we don't do in our family. My sister is trying to make small break-throughs.

I tell her, " I feel great, I know it's a little overboard" and she says "hey, ride the wave!"

I get the bus (which comes right away) to my bike and bike to work.

It's 6:30, only two more hours left of work.

I say to my supervisor " I'm sorry I'm late."

" It's Okay Charlie, we’re just happy to have you here." (He really did)

I walk to my cubicle and I notice an email on my Iphone from my friend Merrill in Utah.
The subject line reads "yippee!"

I sit down next to my miserable co-worker Will who has been on a drinking binge in his upper east-side apartment because his actress wife has left him after nine months of marriage.

(Penny Marshall's voice has nothing on Will's)

Every day he asks me how I'm doin' and I say "terrible".
And he says, "I'm with you."

When he asks me tonight I say,

"You know what? I'm pretty good tonight."

Because tonight I understand (like I never have before) the idea of being in the moment.
Because right now? Right now in this moment in my life?
I feel a lightness and a happiness that I haven't felt in six months.

HOME

"And I kept telling everyone, I want to go home, I want to go home."

Like Dorothy in the Wizard of Oz, I think there must be some parable some lesson that I will learn from all of this. I'll wake up say, and you were there and you were there, and you, and you, and you.

At the end of each session, I have with the doctor, the PT, the dietician.
I tell them (in so many words words) I want to go home. I want to go home.

But instead, they offer sensible and thoughtful advice about what I might need in the future.

"This disease is an expensive one so save your money."

"Be nice to your sister you're going to need her."

"Order a leg brace now, you may need it in the future."

I said to the PT, why doesn't anyone say you may not need it but just in case, or, sometimes people need this sometimes they don't.

I just want to go home.

They never offer hope.

THURSDAY MARCH 12 2009

Tomorrow I get a diagnosis.

I simply don't understand what is happening.

I'm not prepared to think about my life in this context.

LUNCH BREAK

I'm sitting at Tasty's between 29th & 30th on Madison. It's a deli with tables in the back.

I have tomato soup and an apple for $4.85.

There are two women eating next to me. It's just the three of us.

These are older, street smart, New York women, who are both intelligent and laughable. If I were a differnt kind of person, I would write them off as pushy older broads. They have New York accents, highlighted hair, and eye-glasses they make gestures with. They talk about aches and pains, about sex, and the about the theatre.

They remind me of the characters Meryl Streep plays so expertly.

Tired, educated, New Yorkish women who make tiny fatigued expressions and talk distactedly about two things at the same time, fishing through their bag (for something). Meryl Streep character behavior.

I'm entranced. A movie at the next table.

One of them picks up her cell phone and mumbles something about being done at the lawyer's office.

They move on to the theatre.
They discover they are both going to the theatre, tonight! And it's a drag, a responsibility.

I think, PLEASE don't talk about that Jane Fonda play but within seconds they are talking about Jane Fonda and 33 Variations and I think, no! NO! NOOO! Don't ruin my little movie, but they do ruin it, they begin to debate it 33 Variations is worth their time and money.

"Jane Fonda is supposed to be great! That review in the times!"

"Who cares? Doesn't she have Lou Gherig's disease? Who wants to go the theater and watch somebody die from Lou Gherig's disease, who wants to see that!"

I leave. I don't want to hear something that will be stuck in my head.

Outside, I let out a sort of a cry and think, Good! I'll have a good cry, a sob session at the entrance to the American Academy of Dramatic Arts.

It goes nowhere.

I'm not relating to this thing. I don't feel connected to it. (I think)

BREAKFAST

20 QUESTIONS

I run into Tom Rajput in the McCormick Partners employee kitchen (at work).

McCormick is on the 17th floor of a 1930's office building on 29th and Madison. The office has just been redone. It's airy and blandly modern with acres of desks and phones, way more than needed.

A year ago, Tom announced at the Christmas Party that he had six month to live.
Pancreatic Cancer. Turns out he was misdiagnosed but they (his team) still don't seem so hopeful for him. He tells me.

Tom is tall and Indian, with big brown eyes and a painted on smile. I'm not really a friend, but I've know Tom from the last time I worked at McCormick, eight years ago.

This past office Christmas party, I cornered him at the bar and told him I TOO was having issues. (At this point I didn't know what my issues were) We talked, but I think he was more interested in the blond that was standing near us.

Today we spoke again.

"Hey, Charlie, have you had any progress with your diagnosis? " he asks routinely.

"Well, (I say) it's just the worst thing you can imagine."

(I feel like I have to confess to people or I'll have no understanding of what is happening to me)

"MS?" he asks, looking for paper cups.

"no" I say, (remembering my sister saying - oh, if only by brother had a simple case of MS)

"no", I say, " I mean its terrible, just TERRIBLE." making him guess like we're playing an obscene game of 20 questions.
I may have even been smiling.

(Long pause)

"Lou Gerig's disease?????????????????"

I nod.

Tom looks stunned. His saucer eyes stay fixed in the distance and he doesn't move like he’s picturing telling this very story of our conversation to his family and friends or therapist and he's saying,

"And I thought I had it bad, but THIS guy! This guy is just standing there in the kitchen at this loser job, and he's telling me he's got Lou Gherig'!!!s"

If his expression wasn't that, it was the perverse joy of finding out that someone is far worse off than you are.

(Even in disease and death, there is a wrangling for who is in the better spot.)

I tell him "I don't have a diagnosis yet". (Trying to win back some of what I've lost)

"Let's just hope you don't have THAT " he concedes.

"I'm not really sure what I'm going to do". (I toss in)

And he smiles "I don't know WHAT I would do"!

And I'm thinking, YOU don't know? Weren't you given six months to live? I mean how far off am I from THAT?

Tom Rajput sighs and laughs (at the same time) at the monstrous complications of it all,
like we've been talking about the IRS and ten years of back taxes.

He makes his exit, unsteady and ghostlike (the man IS ill)

Left alone, I say to no-one in particular,

" I feel like I'm talking about someone else, like it's happening to somebody else."

and go back to my cubicle.

JANE

Jane Fonda opened in a new play called 33 Variations (I think) by Moises Kaufman (last night).
The play involves my undiagnosed terrible disease.

A friend who runs a nonprofit for cancer patients (she has had cancer)
knows of my situation. We friended on FACEBOOK.

She sent a message through FACEBOOK, NOT to see the play. To avoid it.

I messaged back a short - "thanks for the heads up!"

(And feel weird that she knows what's going on with me and she's afraid for me and
is taking steps to protect me)

I've never liked people stepping in,
but in this situation, I can't help it

The play is reviewed in the Times today.

I skim the review, and spot the words terminal, race with time, physical disintigration and rebuff it.
Instead I read one of the countless articles about how people with means aren't spending money, worsening
the recession/depression.

I can' t put away my dishes, shave and dress myself, go to work, figure out my taxes and rent,
get food to my stupid high-rise hanging over the Westside highway and then ignite a
terror about the tragic and predicted ending for people with a terrible disease.

I'm holding onto the idea that we're all individuals.

They don't know.
Moises Kaufman and Jane Fonda don't know.

SAUGERTIES NEW YORK

saugerties Catskills
Originally uploaded by Charlie Roberts

Black Soap

Black Soap
Originally uploaded by Charlie Roberts

There's a men's bathroom on the 7th floor of the Tisch Buiding at NYU. It's a public bathroom. I've always used it for my dressing room when I do plays there. There's always a bar of black soap on the sink. Year in and year out.

WHITE NOISE

I decide to go to Apple on 14th Street to look at laptops.
The bike ride there is difficult because of traffic on the westside along 9th, 10th and 11th Avenues.

I'm infuriated.
It's 5pm on Sunday.
There is public transportation.

(It ignites my growing rage about Americans lazy ass driving habbits; wasting gas, clogging up the roads,
wasting resources, ruining my world! I walk and use public transportation... SO CAN YOU!

(in your dumb-ass BMW SUV'S)

Traffic is so tightly packed, people can't cross the streets.

I learn today (in the Times) that there was a real estate fore-closure auction at the Jacob Javitz Center.
The biggest one to date.

I try to squeeze through cars on my orange vintage Schwinn bicycle.,
but I get stuck between cars, lose my balance, and fall onto the hood of a car.

The young driver puts her hands to her mouth in horror.
I right myself, and mouth silently to her, "I'm okay".
She drops her hands and releases her scrunched shoulders, making it a big gesture, like she's doing it for the camera.

But I'm NOT okay, I feel the familiar pain of a sprained ankle.

I bike down to Apple at 14th street and interview a child about Apple's next generation of computers.
I feel alone and suspect.
Jason Bourne in THE BOURNE IDENTITY.
Like, I'm a menace to the streets because of my terrible secret.

This morning I cancel a VO audition and work.
I lie on my sofa with a grocery bag of ice cubes on my naked ankle and read WHITE NOISE by Don Delillo,
a post modern novel. Funny, but not easy to read. Dense, comic, smart and detached.
It's a great book to read if you were in Manhattan during 9/11. (And thinking about mortality)

As I read, a distracting voice wonders if my ankle can heal.

LAZY TALK

I step aside for New York's mover's and shaker's, continually stop and let people pass.

My inability to get a move-on has led to
lingering conversations with odd-balls.
I find myself having lazy conversations with people I would normally ignore.

Having my bike fixed on 39th and 10th,
leaning over the counter, slack jawed,
I learned that my bike mechanic used to be fat.
He's slim now.

On the elevator my blonde preppy lady neighbor (who I hadn't spoken to in 9 years) confessed she gave up her dogs to a young couple on Riverside Park.
Her daughter left for prep school this year and it was too hard to take care of them by herself.
I nod in solemn agreement.
Loss, change, what is best sometimes hurts. Yes.

And at the MOMA, at the members desk. Talking to an off beat young man (art major I presume).
He looked like Eddie Monster and kind of sexy in a loner unsteady way.
He answered my questions about the film I was planning to see, with shy intensity.
As if most of his life he'd been told to shut up and was only now getting over the humiliation.
He talked a lot about the film. Looking away and down through all of his information giving.
Since I was tired and didn't want to go to my film, (just yet)
I asked him,

(not really caring- I just wanted to see sexy, shy Eddie, articulate information)

"hey uh, ...who picks these films, anyway?"
Maybe he knew what I was up to because all I got was,

"the curatators"

and I walked away nodding but unsatisfied.

On the buses of New York, EVERYONE talks to each other.
Old ladies who are skin and bones and have tall yellow hair living in walks-ups in the east 30s with no dish washer, washing machine or air-conditioner. (I imagine)

6TH AVENUE BUS