JOY

What brings you joy?

(I am asked to consider)

RIVER

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

WHAT HE SAID

CAMBRIDGE, Mass. —.



Similarly, researchers at the University of British Columbia studied people who had undergone genetic testing to determine their risk for developing the neurodegenerative disorder known as Huntington’s disease. Those who learned that they had a very high likelihood of developing the condition were happier a year after testing than those who did not learn what their risk was.

Why would we prefer to know the worst than to suspect it? Because when we get bad news we weep for a while, and then get busy making the best of it. We change our behavior, we change our attitudes. We raise our consciousness and lower our standards. We find our bootstraps and tug. But we can’t come to terms with circumstances whose terms we don’t yet know. An uncertain future leaves us stranded in an unhappy present with nothing to do but wait.

Our national gloom is real enough, but it isn’t a matter of insufficient funds. It’s a matter of insufficient certainty. Americans have been perfectly happy with far less wealth than most of us have now, and we could quickly become those Americans again — if only we knew we had to.


Daniel Gilbert is professor of psychology at Harvard University and author of “Stumbling on Happiness.” More of his writing and videos of his appearances can be found at his Web site.

SITZBONES

My pleasure...call anytime.
I was going to send you a recap of our talk but I wasn't able to do it yet.
I hope you have been able to incorporate some of what I was talking about--honoring yourself, listening to yourself: thoughts, feelings, sensations, as a caring friend. Taking time to sit, feel your breath, feel your weight in the ground (or the fact that some part of you--your feet, your sitzbones, your thighs, etc...) are touching, connecting with the ground.
Tuning in to the parts of you that feel good, healthy and getting as many details about these parts as you can.
Finding three things each day that you are grateful for.

Ok, that's all for now...

Mattie

FORT MEYERS AIRPORT

When you re-emerge in the receiving airport, everything feels different.

it's not just the weather, it's the people.

At the exit ramp, I watch a Floridia family greet a grandmother and a young man (a nephew or brother?)

The Florida family is relaxed, untethered, wearing uneven tans and cotton cut-offs.
The arriving grandmother (in wheelchair) and cousin (pudgy with facial hair) appear static and grey in comparison.
The Florida family hold their keys and spotty tans like they spent the day at easy jobs and lazy barbecues.
The grandmother and nephew have left cluttered rooms, clipped coupons, and noisy cold.

Their first words?

TANNED WITH CUT-OFFS-"Hellooooo, I guess, your plane was delayed by nearly an hour?"

PUDGY WITH FACIAL HAIR - "That's 'cause we hid bombs in our bags."

The people of southwest Florida carry the sky and sun with their car keys.
The people arriving are defensive about their pending conversion.

LADY BUS DRIVER

Getting to the airport is an emotional hassle. (for me)
Getting to the airport always requires a speedy, anxious, frenzied muscling around,
no matter how much time you set aside to get there.

There are last minute notes to leave, the kitty litter needs changing, the kitchen sink still has food debris in it. Do I have enough cash? I gotta to get to an ATM. Where is the cap to the bottle for my ALS medication?

It's a drizzling morning. I'll get a cab, but on a wet morning all the cabs are taken by weak New Yorkers afraid of the rain.
Outside my high-rise, I lean on the hood of a car to consider my options.

I have an hour and 45 minutes to get to JFK, check in, print out my ticket and begin my tip-toed hike to the Gate.

I see the M42 bus and go for it.

I begin my (underwater jog) toward the bus. The bus driver sees me and patiently waits for me.

The New York Bus system defies the rules that govern the rest of the city; buses take their time and wait for people.
They are cautious and inclusive. They lumber along like they're driving through San Juan.

I stagger up the stairs of the bus and dip may card in. it's rejected (because it's empty?)

The lady bus driver says, "Don't put it back in! Don't worry about it." She stares straight ahead.

(The lady bus driver watched me struggle to the bus on my handicapped hips.
She knows I am not a cheat. I am an invalid. It would be morally impossible to ask me to get off the bus.)

I sit in the closest seat available, put my head in my hands and cry. A movie moment of self pity.

What has happened to me?

I wonder.

What will happen to me?

And there my thought ends. My brain shuts down.
I am off to JFK.