HAPPY SAD

The temperature is perfect in the City tonight.
I bike to the MOMA to see the french film "La Belle Équipe" by Julien Duvivier.
Made in 1936, the acting is great, the direction and camera-work fresh.
Tonight it shows with two endings, happy and sad.
The happy one is the one that's mostly shown.
But of course, the sad one is much better.

A DEEP, DARK SLEEP

In the morning, I bike straight across 42nd street to Grand Central for my AT&T booking.
The recording studio is in the nearby Gray Bar Building.

I am late.

And I'm in trouble. I have forgotten that I move at the speed of a fragile old man. (I'm always on my bike).
I have planned my travel time with my former legs in mind and I realize I have a long way to walk through the station.

I lean into a marble archway and stare at the unforgiving crowds.
I watch the New Yorkers moving easily and quickly. I feel a cold sweaty depression.

And I observe all the gorgeous legs, their amazing mechanics, the genius of their grace, taken for granted.
Not one commuter striding through the station is aware of the beauty of their locomotion.

I am.

I'm an outsider. (now)

My undiagnosed disease forces me to walk carefully (like a person being held at gunpoint) careful not to make any sudden moves. (I might have had my hands in the air)

And SHIT!!!

I'm late! and there is not a damn thing I can do about it. I can't break into a loping jog! I'm stuck! Helpless!
It's that bad dream ... running and running and getting no where!!!

This is when it's the worst, when I can't escape what has been happening to me.

I think about what that neurologist at NYU told me when I tried to charm him into giving me a happy prognosis.

"I mean, I know there are problems Doctor Kumensksy,

(I said - chuckling- giving him my Richie Cunningham smile, like we both understood the importance of keeping a distanced sense of humor about the drama of one's health)

but I'll be okay... right?"

His measly reply?

"It is...

what it is."

turning my good natured chuckle into an open mouthed sneer.

And so,
there is nothing to do but shuffle slowly to my appointment.

It is, what it is.

When I get to the studio on the 19th floor, I'm twenty minutes late. (We get paid roughly $240 an hour. Being late is no small thing.)

Six guys on the production side of the the booth and two actors inside the booth, wait for me.

I see Joe, the director.

"Joe! I'm late. I'm sorry!"

"You ARE late! What happened?!"

"I got stuck!"

"What'd ya get stuck to?"

(ha ha)

I walk into the studio holding up my hand in a shy wave.

"Sorry I'm late."

"Charlie... Welcome!"

"Charlie is in the house!"

We record for an hour or two. I sit on a stool and do a cartoon voice they often request.
I play a football player named Tiny. We improvise. I laugh.

This production team is the best. They've got their pulse on the New York voice over talent pool. They use the same actors over and over and I am one of them.

And I love to act! Love to play characters. Love to be laughed at. Love to be paid good money for my goofy talent.

Later, I am replaced with another actor. This was planned. They were'nt sure how to cast so they booked both of us. AT&T has deep pockets apparently. I'm not phased. I retreat to the glamorous studio lounge/kitchen. Six different kinds of coffees all ready. Piles of bagels and danishes. Colorful happy sodas! Is that an intern preparing some sort of pasta dish for anyone working at the studio today?

I grab a coffee and run into my friend who is also named Charlie!

This blond handsome younger Charlie is holding his two month old baby in the crook of his arm. We always discuss the fact that we're both named Charlie! We take delight in this shared feature, like we just found out we're second cousins or went to the same elementary school. Hey Charlie! we say to each other suppressing a little grin.

Charlie and I talk about his baby. I always have the impulse to ignore people's babies because talking about their baby is your only option. You can't ignore the baby and say, "Hey! I just got hit by a cab"' you have to say," OH my gosh look at that baby! he's so cute, by the way I just got hit by a cab." And if there is more than one person admiring the baby, there's an unspoken competition to see who can say just the right thing about the baby.

You know?

But after talking about his baby, (who really was cute) we move onto films and film festivals. Charlie has a feature film on the festival circuit (that he wrote). And he's a successful film actor too: Spiderman, the Station Agent, Suburbia.

Like Cindy Sherman, Charlie is blessed. (I think)

I ask him how my own short can get into more festivals.

"Getting in? it's political, people put their friends films in their festivals, or once you get into one important festival, all the other festivals beg you to be in theirs," Charlie says.

Political. Isn't everything?

Charlie can't help but ask me about my walk. I am elusive and say, "I 'm working on a few issues with a PT."

I leave the Gray Bar Building and bike to Madison and 39th to pay my AFTRA dues.

On my way there, I get a call. I answer my iphone surrounded by noisy traffic.

It's Johndon. He wants to know when he can help me put shelves in my closets.
Johndon is a former actor and now a major player-builder in Jersey City.

Hearing his voice forces me to spill a mess of emotional angst...
Being late to the booking because of my slowpoke walk, this other successful Charlie, worrying about my next doctor appointment.

"You don't even have a diagnosis, I thought" Johndon interrupts,

"Yeah, but I'm seeing a specialist for ALS. I mean..."

Poor Johndon got more than he bargained for. He's busy at work, and when I end my rant, he says,
"well the whole thing just sounds bizarre."
I need emotional support but Johndon is in business mode.

At AFTRA, I am so overcome with exhaustion that I audaciously ask the receptionist,

"Might there might be a room I can nap in?"

"NO" is the answer.

So I get permission to nap on the stiff orange couch in the reception area.

(The African American receptionist is talking heatedly on the phone with her girlfriend about this guy she's trying to date. Sometimes she's interrupted by an AFTRA member (where do I pay dues? May I have the key to the ladies room? or her boss will pesters her with an annoying piece of business) These interruptions clearly annoy her. She's on the phone talking about a relationship that could change her life. Relationships can be enormously key to one's survival. This job is messing with her future. Her annoyance makes complete sense to me and her one-sided conversation lulls me into sleep.

A deep, dark sleep.

I sleep a solid half an hour.

When I wake up, I shake off my sleep and greet an actress I know from NYU (also paying her dues).
She just finished working at the Arden Theatre in Philadelphia!

Manhattan can be a small town for me. Everywhere I go, I run into someone I know. I've lived here (mostly) since 1985.

(Next) I bike to the West Village for my Feldenchrist session with Mattie.

I tell her that I feel like giving up. What am I trying to achieve? This undiagnosed disease seems unstoppable. I don't want to spend my life adjusting to it. What kind of life is that? The doctors at Columbia Presbyterian seem so apathetic. I mean, what am I doing, really?

Mattie resists this conversation and reminds me to not to be a statistic. Doctors see patients as part of a group. I am an individual.

We research a more radical neurologist who works in Naples Florida. I'll try to see him when I visit my parents.

I bike to SOHO and eat pizza at "Bens's Pizza" on the corner of Spring and Thompson (their famous square pizza for $3.

I marvel at the rich well dressed young people marching through lower Manhattan. Ten years ago, they would be at the Stamford Mall but here they all are now, in tamed (mall-like) lower Manhattan.

At church, I worry that Christian Science may be too unbending. They are serious about their faith!
I'm afraid to bring up my health issues with the other members since Mary Baker Eddy suggests rejecting them.

(But) they have a chapter at the Gay and Lesbian Center so how unbending can they be?

I will call a practioner. Soon.
God is good. God is perfect. We reflect god. How could anything be imperfect with us if we reflect God?

I am so tired by the end of the service that I leave without saying hello to anyone. I take the bike path along the scenic Hudson River.

During my bike ride, I fantasize about moving to a small, leafy city, where there is plenty of room to create, cook, write and love.

At home, I sleep.

A deep, dark sleep.

BEST

I have managed to intimidate my fake boss, and it feels wrong. I want to take it back.
I realize that my fake boss- who is a good decent guy- is worried about being disliked.
I get this. From directing, it's a horrible when people reject your authority. But he was over the top in his badgering me.

Today he seemed flushed. He kept shaking my hand and saying. we're friends now, right?

I feel bad. And I apologized to him for being so emotional. I explained that I was going through a lot.

I think my instinct is right. Everyone is good. There is no point confronting people because everyone is doing their best.

RANJAN

Hello Mr. Roberts,

The May 29th visit would be a routine clinic follow up visit to see how you are doing and address any new issues that you maybe facing. You will be seen by our ALS team, i.e. the physical therapist, nutritionist, nurse co-coordinator and us (Dr. Mitsumoto and I).

As for the lithium study, this was published in February 2008 and indeed created a lot of excitement in the ALS circles. While the study results were rather dramatic, the study design itself was somewhat unclear. Since then, many patients have gone on Lithium and multiple centers have run small studies to see how patients tolerate the medication. The general feeling (and this is not a controlled study result!) amongst patients and physicians is that Lithium is not an easy medication to take and has not shown any dramatic change in patients who have been on the drug for many months.

There are two major trials ongoing in the US as well as multiple other trials in Europe to attempt to answer the question of whether this drug really is effective in slowing the progression of ALS. None of these trials are completed as yet so we don't know the results.

I hope that answers your question.

Look forward to seeing you in the end of May.

Sincerely,

Ali A Ranhan, MD

CLEAN SPIRIT

Saturday night I stay in and drink half a bottle of wine.
Sunday I am too late and tired to go to church. And it's raining.
So, I go to the Cupcake and read about Christian Science.

Sometimes it's hard for me to follow. But I DO get inspired. I do believe that G-d is the good. CS believes that you connect to the GOOD and reject the bad, talking about your illness is idle gossip. G-d only wants good for you. The disease has nothing to do with GOOD so reject it. Ask G-d for his/her wiil to be done.

We are spirit. This is true. And the body is temporart vessel.

I worked on my apartment all day and night. I haven't cleaned in about 7 months.
Papers and junk stuck all over the place. Dirt and cat hair scrubbed away.

I DO feel better stronger. My legs feel better.

I am taking royal jelly. I need a leg up. I need a platform of strength.