
We drive to a medical office park. Inland. Naples.
My mother at the wheel of the car.
We careen to the medical center, I am relaxed. My defenses down. I have spent the morning in the pool reading my novel.
My Graham Greene novel. It's enjoyably cloudy. The whirl of a lawn mower some where? There are no shadows because there is no sunshine. Outdoor light is indoor light. All is comfortable and cool. Dreamlike.
We drive and drive and drive. Past plenty of housing communities built on man made lakes. Imported potted palm trees line the
road embankments. Utility plants on one and fake tropical communities on the other.
My Mother talks to me about what? About traffic? About how some people don't like to go to the ocean. "They don't like salt and sand, they like water but they don't want to get sandy." she explains.
And I sit undefended, assuming that I will control the situation with this Florida TV ready doctor.
I've faxed all of my test results and reconfirmed my appointment with the doctor twice. I have printed directions in hand.
We find the the office park. It is depressing. It is corporate and hidden away from the Florida of sunshine and gulf and malls.
These medical office parks offer... the end of the line.
My mother drops me off, I can't walk very far ... remember?
Inside the building,
I'm nervous. Like I'm going to court. I trip. "You alright buddy?" Yeah, I'm good.
I walk into the wrong facility. A room filled with oxygen tanks? I take the elevator up to the correct office.
This office is well supported by a large smiling white staff.
I fill out paperwork. I am introduced to Joe, a small young man with blond hair and a wedding ring with the edge of a born again christian. He takes me in to be weighed, measured, blood pressure.. It's high.
I am then taken to Dr. Shelmutter's private office in the back. Large rectangular windows look out onto Florida swamp, jungle.
There is toy boat on a shelf.
Joe tells me to chose any of the grey chairs to sit in. There are three. The Doctor obviously gets the larger brown leather chair.
I stare at my iphone. Someone has friended me on face book.
The doctor arrives, smiling white even teeth, short and boyish. Nice looking, a little tired around the eyes but TV ready.
"I guess you must be happy with your name these days"
I have no idea what he is implying.
"I'm sorry, what are you talking about? " i reply bluntly softening it with a half formed smile.
"Draper, Don Draper" Mad Men?
Oh yeah, I think, TV. I don't watch TV. Why? I wonder to myself for a half a moment. I am the type of person who protects his individuality. That's why.
We have a conversation. About?
My history. When it all began.
I start with my falling down playing tennis last April. I'm not sure if this is really the true beginning but it makes a good beginning for my TV MOVIE of the week.
I tell him about feeling depressed and walking two miles to work each day, My feet slapping the pavement. The tripping. The tests, The doctors. All the the tests. I am low energy and slightly detached. I tell my story (I think) with the idea that maybe this guy will offer a whole new spin, a better more positive spin.
He asks questions. I tell him I've made a list of supplements I've been taking.
"Did you bring the actual supplements?"
"No just a list"
He has me walk down the hall.
" I see, it's bilateral"
"yeah, well it's mostly in my right foot." Trying to lessen that whole bilateral thing. The bilateral thing is a key clue which I want to hide, I want it to go away. If it wasn't bilateral, we would be talking about a whole other ball game.
We go back into his office. I take my shirt off. He puts his hands against my back. Watching for things. I do that thing that people do when they are exposed and vulnerable. I disappear from the room. My eyes focus on nothing, My spirt has taken a walk around the building until I can put my shirt back on.
He tells me he needs to dictate a letter right away. His observations? I guess.
I sit back in the gray chair I originated in and look for my list of supplements.
i can hear the doctor vaguely in the next room speaking deliberately into a microphone. It is not a short letter. i can hear bits and pieces, and if I strained of moved, i could probably hear more clearly what he is saying.
I decide to stay where I am, I decide to not to be able to hear the dictation. I chose not to hear.
I wonder about this. What kind of person am I that chooses not to hear. Why do I chose not to hear.
Lately, every choice I make in life, is up for examination.
The doctor comes back. It feels funny. Like, we're in a strange Joe Orton play. Like the doctor went into a closet and did something funny and perverse, but now he is back to resume the conversation.
Ah yes... where were we?
"Well, it seems to ME that you have ALS. I don't know if you know but ALS is diagnosed through a process of elimination. You
have been tested for virtually every possibility and it seems that this is what is left.
The fact that your taking RILUTEK , an extremely serious drug, indicates that that is what your doctors at Columbia think as well.
I tell him, I debate, I try to win back, I try to change his mind, i try to reverse history by saying that the doctor told me that I did not have ALS that this drug was optional, but that if I did get ALS I would be happy for taking the drug.
Dr. Shelmutter is not familiar with my keeping reality at bay.
He pushes on, "look, that drug is a very serious drug, it is not offered lightly."
As the doctor speaks the wall of life close in on me. I feel trapped. Air is heavy. I feel like a gunman is playing eeny miney moe with a crowd of people and stops on me. NO.NO! NOOOOOOOOOOOOOOOO!
Or in a lighter scenario, I am a toddler in kindegarten, stuck inside with the teacher, watching the rest of the kids play outside.
I can't get back outside.
We talk about supplements. "That's whey your here, right?"
He goes out to make a copy of my list.
I jot down some possible questions for him.
If it's not ALS, what could it be?
What about drug case studies?
He returns with a xerox of my list and tells me that he would add a few things and triple my intake of coque ten.
I ask him if New York is a problem.
"I wouldn't stay there. I don't know if you need to stay for the biz. I don't know what your financial situation is but New York is a dirty noisy place. You want to avoid raising your cortisol levels. You need to eat as much organic food as possible."
Our conversation starts to give up the formal back and forth protected doctor patient code of conduct. The extreme and hopelessness of the situations wins over hopeful civil protocol. I become emotional, the doctor I notice looks exhausted.
Like he's dealing with things that his TV ready persona are beyond. His face and demeanor become slack.
I tell him I don't know why I am seeing the best Neurologist In NYC if there is no course of action.
Neurologist are there to diagnose, he tells me.
"Colombia is an excellent facility. My father did graduate work there but they have no interest in untested treatments."
(I have this nervous sense that the doctor is intimidated by New York, by Columbia Presbyterian. More than once he said,
"here you are seeing the best of doctors in New York and you've ended up here in the far reaches of Naples Florida'... a chip on his shoulder. Would he be laughed at in New York for his book, A BETTER BRAIN? Which he gave me free copy of.
"Haven't you read my book?" he asked me disappointed.
The doctor suggests that they are not going to offer me alternative methods at Columbia, They might be only interested in their own case studies. They are only interested in FDA approved drugs.
I tell him that I haven't done a lot of research about the prognosis because it is all so depressing.
Well , he says, I don't mean to sound like an egomaniac. I don't want to sound like I'm trying to impress you, but I have had some success in this area. There are drugs that could possibly help you.
When you go to Columbia Presbyterian next Friday. Bring my letter with you, Ask them, tell them. Not as patient- doctor but as person to person, man to man. Would you doctor take these drugs if you were in my position. If you were in my place?
Call me Monday about this meeting and I'll take your call right away. A priority.
You need to get on this right away, You have lost a lot of mobility, you need to get on this. And I can't promise you anything bit you can hold onto me if you like. He leaves.
His assistant comes in and asks me if I will elect to take three blood tests that the doctor has suggested. A test for metals, antioxidant levels and something else. It's christian JOE and he kneels in front of me with a clipboard like an airline steward taking a cocktail order in business class.
"you live in New YORK?!! We love New York! (like he's talking about an exotic remote south american island) I've been there twice and we need to go back there to really explore it"
I sign some release papers and follow Joe through a maze of rooms and offices and employees.
Dr. Shellmutter has a booming business.
I sit in the blood taking room. and wait for the blood taker. I am an old hand at this now. Doesn't phase me.
I am doomed and emotional in my chair. I watch poople my age and younger walk around with ease and I wonder why you would spend you life inside this medical park when you could be outside or doing or creating or something.
I identify with my barber Max's young boy.
I sit. Spent.
Joni Mitchell's "River" is on the radio.
I wonder if G-d is reaching out to me, trying to comfort me.
It stays pretty green
I'm going to make a lot of money
Then I'm going to quit this crazy scene
I wish I had a river
I could skate away on
I wish I had a river so long
I would teach my feet to fly
Oh I wish I had a river
I could skate away on