HAIRCUT ON 23RD & 10TH

DISCOVER CARD

I finally emailed Dr. Ranjan yesterday to get the results of my spinal tap.
The spinal tap would reveal if I had certain diseases.
Diseases that are treatable.

I realized that they were not going to contact me, I had to contact them.
Whatever is going with me and this terrible disease, doesn’t live in the same time constraints as the rest of the world, certainly not New York.

I have plenty of time, because my terrible disease really has no treatment!

If they had discovered I had a different disease, a treatable disease, they would have (I suppose) contacted me (right away) to begin the hopeful and happy treatments and medications to stem this horrible but treatable disease and my story could have turned into a tale to be repeated often by friends and office-mates of how one shouldn’t believe what doctors initiallly say, it’s not always as bad at they predict, look what happened to Charlie Roberts, (my fake name for this blog) they misdiagnosed him and he’s alright!

(Good ol' Charlie Roberts)

Instead I get an email back from the Doctor as follows;

Hello,

We should certainly meet. Please give Aisha a call at 212-325-1317 and she will schedule you for a follow up visit with Dr. Mitsumoto.

Ali A Ranjan, MD


Ugh.

So...

I called my sister last night to tell her about the visit.
When I speak to my sister she is cautious, reserved and kind to me.
She is slow and methodical in her responses, like she’s on the witness stand and doesn’t want to give away information that may lead to persecution of the defendant.

She wants to be there for me for this final visit,

“another pair of ears, one’s fight or flight instinct naturally kicks and you simply can’t hear what they are saying”.

My sister has taken care of most of my medical appointments.
During my intitial appointments, when they told me I could be in trouble (serious trouble)
I simply couldn’t take it in at one time. It was information overload.

For me.

If I had been accused of a serious crime (which is kind of what it felt like)it was as if my sister was my top drawer lawyer who was processing the information for me and telling me which court date I needed to show up to.

My sister speaks to me on the phone in a low-vulume, measured voice.
This is not normally how we would talk. My sister is an emotional animal like myself and I imagine is getting coaching from a therapist on how to speak to me. I appreciate this.

She apologizes for having to deliver the harsh factual reality of my situation. (I've done no research myself, and she has done some (a lot?) and I bet this is somewhat pressureful for her.

I tell her " I’m FINE I feel FINE, and those doctors don’t know!"

My sister (using her controlled even voice) has to push back, “that's what terminal cancer patients say”.

There are pauses (long) as we move along the conversation not wanting to say things that will put the idea into my head to hang myself.

“Well, I say, I’ll have to think about all of this” which means the exact opposite, which means (I will put this our of my head forever and make a turkey burger and finish the last thirty pages of Slaughterhouse Five)

The reason I’m reading Slaughterhouse Five is that about twelve years ago I did DISCOVER card commercial with Kurt Vonnegut. I hadn't read one of his books, except the Wand Jane play.

I didn’t have much to do in the commercial, I played a tailor fitting him for a suit.

I put it on youtube.

http://www.youtube.com/watch?v=7XZMq9KtHYg

(You have to cut and paste it in your browser to watch it)

I remember the casting director called me directly for the job. (Usually they call your agent)

I refused to return the casting director's calls because I thought it was a salesrep from the Discover Card offering me a deal.
He kept leaving messages. "I'm calling regarding the Discover Card" at which point I'd hit delete.

The booking was easy, Kurt Vonnegut was nice and I wanted to ask for his autograph but I thought a professional New Yorker doesn’t risk such things.

At one time, part of being a true New Yorker was to be unimpressed in any situation.
I think that’s gone now (that New Yorker attitude) The City is so livable now, it’s invited a whole cast of wholesome and polite types that would have brought CATS CRADLE had him sign it, taken a digital pciture with him, posted it on facebook and so on.

Now that all I do is eat and pick up after myself and read novels I'm catching up to my Kurt Vonnegut experience.
It's a really enjoyable book, Slaughterhouse Five. Took me until page 150 to get into it because of figuring out the rules of the world of the novel.

THE CUPCAKE CAFE

MARY BAKER EDDIE

I talked to my friend Peggy today while I was drinking coffee at my coffee shop in Hell’s kitchen.
I talked to her on my I-phone which has become my security blanket.
I polish it in my hand like a worry stone.

Peggy is an odd bird. I like to talk to her because she is opinionated and philosophical. She’s led a complicated and messy life. Peggy was a famous film actor at one time. Now she’s selling real estate in the Catskills and redoing an old federalist brick house. Something I'd like to do,

We met in an acting class. She was Gertrude to my Hamlet.

Pegy is a Christian Scientist. When I told her about the terrible disease thing, before I could even go on about symptoms or prognosis, she was urging me to serve others and get outside myself.
This irritated me. I’m barely aware of the repercussions of what may become of me and she seemed to be sending me on a path of rote extracurricular activities.

But since I am annoyed by the terrible disease thing, Christian Science and Mary Baker Eddie kind of support my stubborn defiance.

Peggy suggested that...

physical ailments are a perceived thing

you are as healthy and as vulnerable as you decide

ask yourself how your problems serve you

(I have to admit that I’d like to leave New York and change my life)

She also brought up the Buddhist idea that there are no real problems, it's your perceptions of the circumstances that creates the problems.

That’s true. I see that.

Oh and also… be careful of being fearful.

Hmmm…. A lot to chew on and I appreciate it. I think that it takes discipline to have the proper outlook. If you don’t have it, religion, support groups, and education can put on the right path.

My friend John Don just called and interrupted me here at the computer.
He wants me to come to his wife’s sixtieth birthday party on the upper east side this Saturday night. She is in New Zealand right now shooting a commercial.

He asked how I was doing physically (I’d hinted in past conversations that I had some serious issues) and I guess I could have just keep my mouth shut and put him off.
That was my instinct actually.
But then I’m not having a genuine relationship with my friend.
There is some righteous voice telling me to spill. I’m supposed to include people.

The drama of my disease is so big that I kind of get a charge out of telling people.
But after I tell them I feel tainted somehow, like I confessed that I once accidentally killed a small child.

Something about "the reveal" that puts me on the other side of my listener. No matter how strongly they assure you " I’m there for you", they’re really just shocked at what you’ve told them and relieved that they're still standing on firm ground.

All of this is unacknowledged for my sake and their sake but from where I’m standing it just makes me feel further and further away from my friend.

John said he wouldn’t tell anyone (though he’ll have to tell his wife,right?)
And if he felt compelled to say he wouldn’t tell anyone, if it is a thing to be kept secret, should I have told John?

ugh.

John said he HAD a friend with ALS.

Had.

There is no conversation to pursue there.
We talked about his wife’s birthday.
And wrapped up a difficult conversation like we were talking about a lost job or a broken foot. But both of us are changed. The status of our relationship is changed.

I feel far away.

COFFEE SHOP

Sent from my iPhone

PEGGY'S HOUSE IN SAUGERTIES

AT SAG

After eating lunch at S'nice in the west village,

(where I spotted the “verizon guy” eating lunch with a handsome man I went to college with -I hid behind my book- I'm reading Slaugherhouse Five)

I bike to Screen Actors Guild to pay my dues. On the ride there, I topple over on my bike in Times Square because when I lean over with my toes to steady myself (when I am compelled to stop) my weak leg gives way and I neatly drop over like I’ve been shot by an invisible bullet.

This often elicits sympathy from the nearby New York crowd. As I’m being pulled up, I cast my eyes down and feel like a wet cat, vulnerable and ashamed. But there is nothing to do it about it because I walk like a very old, old man because of my terrible disease.

At the Screen Actors Guild, I take an elevator to the twelfth floor with a young actor who I imagine just moved to the city because he is so cordial and nice to me, and the guy at the front desk, and later to the SAG receptionist. He had that (new in town) manner that is polite and respectful to everyone because you never know who might help you on your way up!
I respect this, but having lived in New York for 22 years, it's a hard to keep up.

I pay my dues to a bald black man who sits behind a glass partician (is it bulletproof?) and began my sad tale.
I look sour and tired, and my attitude is ... well here goes nothing.

“Hey um, I know this is odd, but uh, as it turns out I may be disabled. So, um, is there anything SAG can do for me?"

The bald black man has heard it all, so he is all business and points to a hallway where there is a door marked COMMITTEES.
I thank him and he GIVES me a quick once over and adds, “good luck man.”

This makes me think, ah shit! this is really happening to me.

There is a curt woman at committees, she is also black. She’s on the phone, (with a friend I imagine) She has zero time for me. My question about the disabled committee doesn't even induce eye contact. She hands me some xeroxed papers.
I notice they are forms to fill out if I have an interest in working for a committee.

Then I bike to my coffee shop in Hells Kitchen. It is packed with artsy types. They all look like actors on a TV show about New York. I stare.

And as I stare, I understand (for the first time) the energy and focus it requires to talk effusively with a friend.

I watch.

Hands out, heads nodding, eyes connecting, half smiles, thwarted interruptions, confirming, identifying, so many calories being used! It's just beautiful to watch, like a slick Hollywood picture, like Benjamin Button! The music swells and Benjamin and Kate Blanchet talk and laugh and eat and fall in love over dinner in New Orleans or Paris.
But the viewer doesn’t hear what they say, the viewer sees their mouths making shapes, giving into lazy laughter, stealing romantic glimpses as the soundtrack plays out.

That’s what it was like for me at my coffee shop in Hell’s Kitchen. And as I stared, I began to stew and let the creases on my sad face deepen and give into a lost slightly opened mouthed look of amazement.

I was so tired. Tired because of this terrible disease (I think).

TV AUDITION

This morning I bike to an audition for a TV commercial downtown below Houston Street on Varick.
I put on my bankers suit and reading glasses and with my new clipped haircut I look like “a thing”.

I am pleased.

I look like “a thing” to be bought by an ad agency.

“Let’s book the boyish dude with the owl glasses and the brooks brothers suit”.

As I bike there, down the relatively new bicycle path along the west side highway, the sun is clear and sharp. It feels right.

I remind myself to appreciate this beautiful day, because as we all know, you only live once (I guess?) and it’s nice for someone like me to bike down a city bike path on a cool, sunny February day, in a Brooks Brothers tie, to go to a TV audition.
This is a rare experience (right?) and so I try to seize it, observer it, note it.

Before my audition,
I have to buy a cup of coffee at Dunkin Dough Nuts because I’m sleepy and sluggish from this terrible disease I have.

Normally, I'm nervous for auditions which irks me. Now I find that I have lost my nervous side. I shuffle past security and consider that now that I have this terrible disease I will become a rare and relaxed successful actor and then die.

The TV commercial audition is in a skyscraper on Varick Street. The waiting room is crowded with 30- ish men in suits of varying types. We could all be contestants on a certain type of Bachelor show. All the bachelors are hushed and focused like we are all waiting to go into confession. (I’m not catholic, but…I suppose)

I look at the copy and… "shit".

There are lots of lines.

I do better with less lines even before I had this terrible disease.

I study the script and make up little games to help me memorize phrases like, “consumers may realize gains frequently”.

I can tell that my lazy assed tongue won’t be able to say the lines with the needed panache, so I go into the hallway to remind my tongue how to glide from one consonant to another. I remind myself to breath deeply and speak slowly if I need to.

As I stand in the naked hallway, loitering near the Men’s room, I am approached by a red haired man in a green V-neck. He approaches me with irritable, (straining to be generous) purpose. He asks me (though I can sense he already knows since I’ve been mouthing words and holding a script) if I am auditioning for the commercial?
Yes I am, looking guilty,sensing his next sentence.
“Can you practice in the waiting room, we’re not allowed to have actors waiting in this hallway”.

I agree immediately, apologize fast and turn on my heel. Like a hunted bird that has been knocked off by the his first shot, the red haired man’s eyes strain as he realizes his target was too easy and smiles to take some of it back. But my back is already to him.

I sit back down in the quiet wating area and think that what I wanted to say is that “I’ve been an actor my whole life and I’ve just recently suffered symptoms of ALS, and now I find it difficult to speak on cue, so I was merely sounding out the consonants… normally I think rehearsing this dreck is not always worth it… having fun and looking good is the name of the game… but now you see, purposeful red haired man, I’m up against it.”

I nurse my lonely resentment and let it wear off like the sweat and heat from a five minute sprint.

My audition is in a small room with a camera and a pretty blonde woman who acts nice by laughing needlessly. It seems a little pushed but I appreciate her trying to meet me half way.

I lie and tell her I have a cold to cover my bases in case I malfunction saying the lines.
I’m not nervous. I’m just not sure if I can connect the dots or act.

I get through it. My performance lacks spontaneity and professional fluidness but in the end I experience a nice lift for having auditioned. Like Benjamin Button, I like a little adventure.

WRITER'S GROUP

I go to writers group in midtown at 7 pm.
I am in a mean and lonely mood. DESPONDENT. Although I am told this is not a good choice.

I have a new haircut which allows me some confidence.
I see David in the elevator and the chemistry of my body and mind changes because he is so funny and smart.

I’m glad that I made the choice to go.
I'd considered (seriously) lying on my couch and staring into space... in the dark!

But I am in a small theatre office around sunny hopeful writers in skyskraper in midtown. We are crowded in a mini circle, seven of us, as if around a campfire, our toes knock into each other.

I didn’t bring anything to read because I have no sense of how to write. I missed the boat entirely on writing. I have no confidence, no élan. At a certain point I thought, why bother? Let other people write. Now, I have no background, no history, no skinned knees or recovered ego from a maniacal writing teacher. And writing (it seems) may be the only thing that I am able to do. This is why I’m tapping out this nonsense that you are reading.

People pass out scripts and ask people to read. I am asked several times to read various characters. I am a good reader (usually), because when I was younger I was shitty, so I made a practice of doing hundreds of readings this past decade, I may have done a thousand!

But now my voice is weak and my tongue is tied because of my undiganosed disease that started with my feet. I want to apologize to the writer, to the room. But I've learned an actor never apologizes. And what am I supposed to say, "I have a neurological degenerative disease so … bear with me folks"?

Some of this writing is really good. Normally I could have sold it.
Make it sing. But tonight I struggle. I have no sound, the muscles that control my tongue are weak.

My brain, however, doesn’t feel doomed. There is no siganal of despair.
My brain tells my body and self that this is temporary. It feels like I’m shaking a bad cold that has left me tuckered out. With enough rest and orange juice I’ll be whistling as I walk.

I have to remind myself that this might be the best I’ll be... from now on. I have to remind myself that I have a terrible disease.

During the discussion of a short play (about a man who dreams he is in his ex-girl friend's tear drop) I lose focus.
I wonder what I’ll do with myself.
Will people take pity on me and hire me in an office even if I can only whisper and shuffle across the floor?

Back to the discussion.

This writing is good. I never had the talent to write (I think). Shoot.  Now writing is how I will have to create.

There is a super handsome young man who sits across from me. His skin is flawless and his bone structure like the Michaelangelo's David. I feel so far away from him. How could anything possible go wrong for him?

His handsome skin and bone structure will take him far and protect him.

WAITING FOR DIAGNOSIS

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".