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.

RUB DOWN

Today,
I clean the kitchen.
I get a haircut.
I buy groceries.
I feel better. Hopeful.

When I walk in for my haircut today at West 23rd and 10th,
all four of the barbers smile and nod to me. (recognizing my loyal patronage)

This causes me some consternation. I know I should be glad for their kind respect, but i kind of wonder if it's not proof of my unchanging, static life.

I am loyal because I never make any changes.

I wait almost thirty minutes for Max, the same barber I've had for 10 years.

Max is from Moscow but now he lives in a neighborhood in Brooklyn (or Queens?) in a Russian community. He's tall, boyishly handsome and could easily be a model. Today he sports a flawless tan and his hair is cropped just so.

Afters he wraps a smock around me and we follow the ritual of Max asking my preferences (clippers or scissors, straight or natural back, parted on the right, short on the sides?) I ask Max about his kids. He tells me about their recent trip to Disney World. That's why he is so polished and tan today.

Max speaks with a delicate international accent. It could be French, it could be polish, it could be Hungarian.

"It's very cheap to vacation in Florida in May. After spring break, before the summer crowds. We stayed near Sea World and spent most of the time at a water park, close by. It was sunny and 94 degrees every day and ... it was fine with me."

His in-laws had planned a trip to Mexico but had to cancel at the last minute because of the Swine Flu.

"I think the media created the panic, not the flu, you know?"

I'm tempted to tell Max about my friends in Utah who had their school shut down because of multiple cases of the swine flu, but it would be too much work. To tell, to explain, to articulate. And what exactly do I know or want to say about the Swine flu?
Not much, not anything, really.

As Max describes the rides at Universal Studios, I am supine in his chair. I speak and nod and confirm, but my eyes are shut. Glued shut. Deliciously glued shut. Today I began taking my medication twice a day (before bed and now at noon) the pill creates a reckless drowsiness.

I can hear everything clearly in the barbershop but physically, I am neighborhoods away.

Through my haircut coma I ask Max if his kids liked Disney World.

"Did they behave?"

"My youngest boy broke down and cried on our last day and begged me to move the family to Orlando. Can you imagine me, supporting a family in Florida? S' Ridiculous...

This makes me think about how kids are at the mercy of their parent's actions. The beauty and freshness of Florida must be so enthralling to a nine year old. Why would any rational person want to live in the dirty confusion of New York? It must be so clear and obvious to Max's little boy. it's kind of heartbreaking. (in a way)

Max tells me how proud he was that he could give his kids this trip to Disney World.

"Something that they'll never forget. A memory that might inspire them to try a little harder in school " he tells me.

Somewhere in my sleepy consciousness, I'm jealous of Max's fatherly pride.
Being able to provide something memorable for your children. I want that. Wanted to experience that. But my envy is easily subdued by my own drama, by my own disease TV movie of the week.

As he leans in to trim my eyebrows, I think about Max.

I used to feel superior to Max because he's a recent immigrant and a barber. While I? Me? I'm an old timey American with a glamorous creative career or at least pieces of a glamorous creative career.

But when I see Max today, I don't feel superior at all. I feel like an English immigrant who got here sooner than my Russian barber but now my Russian barber is doing really well and I? well, I am down on my English luck.

We are all just part of the ragtime (or ragtag?) American machinery.

At the end of each haircut, you get a hot scented towel wrapped around your face and a short rubdown on the back of your neck.

I live for this hot towel. It alters my chemistry. I feel like I can actually SEE better after the hot scented towel rubdown.

I give Max his customary $5 dollar tip and think about lunch.

I bike to S'nice in the West Village (Hudson and the 13th?) I order coffee and a cheese, tomato, basil sandwich for $10. I call Christian from the cafe and we discuss his staying at my apartment. No need for him to come over (I offer), I'll leave him a key and notes of instruction taped to the kitchen counter!

This inspires me to bike to my obscenely overpriced grocery store on 42nd Street and buy staples. My kitchen is depressingly vacant. I circle the aisles for an hour and fill my cart like I'm planning a party. Why I can't I always shop like this? (I wonder)

I have $175 worth of groceries delivered. Mostly non-perishables, so that when Christian arrives to my apartment, he'll see that I am a responsible, capable, New Yorker with 2 boxes of baking soda, several jars of salsa, a twelve pack of diet coke and a various kinds of bottled water to finish the effect.

Peddling home, I stop at a fruit stand and buy six apples for $3.

I feel better. Hopeful.

email from utah

I also believe that you could recover from this. I just want you to live up to your "I Would" list when possible and not do stuff that is a random time filler. Also, the disability aspect would surely not be an issue with acting--Habib is used to dealing with non-actors. You can qualify to be disabled enough not to be able to get back and forth from work for a $15 dollar an hour job or to accept acting jobs that require major movement, but the odd voice over job would certainly not discredit you. I would love a lawyer to take that one to the Supreme Court! It would win, and it could be a part of your bookblog/photography/docu-philosophical/drama project. You call it the movie of the week, but it is much deeper and more elevated because of your narrative blog voice! Let me know if you have made contact with Christian and it is all worked out.
Love,
N

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.

SPEECHLESS

I sit on my lumpy sofa with a glass Cabernet from Chile and my new laptop.

My body feels beat up with pieces of glass stuck into it.

I have made chicken breasts baked in onion soup with cut up yams, red onions and pieces of garlic in my new Crate & Barrel casserole dish.

I am doing laundry and straightening up! Cleaning up my apartment is huge.

To clean, to move things, to fold, to put away... my body throbs from overuse.

I shouldn't have gone to work today but work can be fun. An escape.

Sally and I talk about Mark Cohen the famed art collector in Greenwich. She's writing an article about him in ART magazine.

"I just read something about him in Details" I tell her.

Sally is great. I learn she is the middle child of nine catholic children.

I tell her, " I know about you big Catholic families. I grew up in Conn. You all stick together, unlike the isolated, depressive, fragile protestants. (my clan)

I catch handsome Jason stealing a look my way.

Dan, my cubicle neighbor, has been out until five this morning drinking vodka at a club in the east fifties, slept at his girlfriend's, got up at eight to help a friend move, took an hour nap and came to work hugely hungover with a poised twentyish smile on his tanned face. Young Dan is superman.

(I sometimes pondered (what it would feel like) to have a cranky aging body because my body has always felt so magically young. Springy and easy)

After lunch,

(however)

there is nonsense at work.

My pretend boss orders me into a conference room to dress me down for staying on the phone while he made an announcement.

(I was talking to my eighty year old mother about my "situation", my mother wants to pretend i have a foot problem. I STRESS to her that it is not JUST a foot problem. I am ruthless. I feel guilty. The conversation is intense and meandering.

My mother loses color in her voice when you pull out the bald facts. Like you're disregarding the rules of manners or you're accusing her of something.

So,

My pretend boss tells me it is disrespectful to talk on the phone when he is talking.

(I didn't hear him) and he's not really my boss.

Never the less, I am so outraged at this silly pomposity, I am speechless.
I can't make a sound with my vocal chords

I open my mouth, my throat closes up.

It might appear that I am having a heart attack.

Pretend Boss is frightened and concerned. Like he is not sure if he's supposed to administer the Heimlich maneuver.

But, I manage to eek out... "NO! I was talking to my mother. Any person in this office would not hang up on their mother to hear some announcement."

(these announcements are continues)

Pretend boss is worried that he looks powerless in front of me. (I think)

He suggests that next time I call from a conference room.

I nod okay and walk out with out saying a word.

I am so angry (and now surprised) at the immediate drama lodged in my throat, I can't concentrate.

I couldn't make words.

Pretend boss (to his credit) is worried about the exchange and (perhaps) ashamed of his posturing, and he stops by my cubicle and apologizes.

Flummoxed, I leave my iPhone at work.