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.

LETTER

Hello Dr. Ranjan,
I am well. I hope you are too.

My next appointment is May 29th. Since I haven't had any new tests, I was wondering what to expect from this appointment.

Also, I was wondering about your thoughts about this...

Best,

Mr. Roberts

Number 153 of Nov 23, 2007.
>
> “Lithium "to slow down, with a certainty in excess of 95%, the progression of ALS". These exceptional results came out from an Italian study on 48 ALS patients, 32 treated with standard therapy of riluzol, 16 treated with riluzol and lithium. These results have already been submitted to a well-known international journal that is now verifying the data and may publish the report shortly. "15 months after the start of the study, 30% of the patients treated only with riluzol died. In the second group there were no deaths, even though half of the patients in the group had the most aggressive form of ALS, that is bulbar". This is what one of the Italian researchers, experimenting with the use of lithium against ALS, Francesco Fornai, associate professor of the department of Human Morphology and applied biology at the University of Pisa, stated. Furthermore, utilizing parameters from the neurological scale to measure progression, there was no significant
> deterioration of the ALSFRS-R, while the decline was evident within 3 months in the other group. At the end of the study the decline was measured at 50%. A preview of this study was given on Nov 8, 2007 during the ***IV LIMPE Congress, the Italian league in the fight against Parkinson's disease.”
>
>

CRACKER BARREL

I meet Dustin at 7:30 in the morning in the dirty (in between) at Port Authority.

We sit and smile on the bus to the airport.
We have fragmented hopeful tidbits of conversation like two kids excited to go back to camp.

We pick up a rental car at Newark and drive ten hours to Athens Ohio by way of New Jersey, Pennsylvania, Maryland, West Virginia and finally Ohio.

The drive there is fun and tiresome. But the landscape on the way there is decorated with trees in various stages of bloom. There are tons of different shades of colors for he emerging Spring buds. We talk about a recurring purple tree that we never did find out, the name of.

Whenever I drive out of the city I am reminded that the land outside of the city is quiet and more open and easy and also somewhat boring.

New York is the emerald city.

Dustin and I have dinner at a Cracker Barrel. Cracker Barrel is an amusement park style restaurant. The wait staff is cast as county folk and it has a large gift shop selling the myth that Maryland is really just like "Hee Haw".

Our 82 year old hostess Zoey is tiny and humped over with large teased up blue hair and war paint on her sunken face.
Zoey has clearly suffered a stroke.

I ask if she'll be our waitress, and she replies with worldly self knowledge, humility and kindness,

"Oh no, Oh, I'm too awkward to be your waitress."

(She understands these out of towners might be laughing at her, egging her on for a good show and Zoey is game.