central park

Social Security

I spend three hours with a case worker at Social Security this morning.

G-d Don't Make No Junk

I bike to 10th church on Wooster on my new, super-cool, electronic bike.
Before church, I have my traditional slice of pizza at Ben's on Spring and Thompson.

Setterly and Jonathan are the greeters at church tonight.
I am happy to see them. I am relieved to see them. I laugh with them. Genuinely.
They are great people.
I will miss them if I leave New York. (I think during the service later)

After Church, it's warm and humid, but it's a wonderful August night.
The expectations of what the summer might be, are gone, we are in it, summer is here.

Setterly and I lean against a parked cab, our feet unsteady on the cobble stones.
Setterly is tall and warm with a good a sense of humor and the voice of a clarinet.
I like her.

"Hey, I met another Charlie today."

"What?"

"Yup, another Charlie"

"That's not right."

"Apparently, there are lots of Charlies out there. Maybe this Charlie was ying, an impostor."

I gently goad Setterly into taking a spin on my new bike.
She's game, having driven a Harley in another life.

I adjust the seat for her and She rides the bike down the block.

She can't get it to work.

"PULL BACK ON THE THROTTLE, THE RIGHT HANDLE BAR!"

"GOT IT! OH MY GOSH, SO COOL!"

There's a movie being shot. A big crew, lights, trailers.
A young beautiful PA begs us to be quiet, in that intense passive aggressive way that cant help but get under your skin (just a little).

Film crews in the city often make me cranky with envy. Through the years, I've surrendered to them. Just another small frustration of city life.

As she makes a sharp turn at the end of the block, my bags falls off the back of the bike. When she returns (breathless and excited) I tell her I should go get my bag. She realizes what has happened, she doesn't miss a beat, and jogs down to the end of the street to retrieve my bag.

"Whatda got in here? an andiron?

- "it's my bike lock, it weighs a ton."

" You lock this thing up just like a regular bike? ... Huh.
So, that was fun, but why, uh, why a motorized bike?"

I reluctantly spell out the sad clues to my terrible disease without actually naming it. Never naming it. And she doesn't ask.
I forlornly explain that my muscles could be weakened if I work them too hard.

Then Setterly adds,

"for now."

And I love her for that.

"Don't be mesmerized by what they tell you. Do not give credence to a disease that doesn't exist.
It is error. As my teacher told me, it's not even about healing, there is nothing to heal,
because there is nothing wrong with you. You are fine.

We are a reflection of G-d.
G-d intended us to joyous exalted beings. We reflect his image."

I tell her its all very confusing, dealing with doctors, coming to church.
I feel doomed when I speak to anyone in the medical world.

I tell her I'd like to work with a practitioner but I'm on medication.
A well known practitioner told me he couldn't work with me if I was on medication.
He was nice about it, I understood.

"You know Charlie, there ARE practitioners that will heal people who are on medication.
That medication can't harm you or your healing because it is mindless material, it is powerless.
I can give you a few names. Do want some names?

You know what, call me.
Call me. Let me give you my card, did I give you my card before?"

(she did, but I took this second card anyway, I love cards for some reason)

"We've got to hang out, you and me, you're going to be my new (go to) friend, my new (hang out) buddy.
Let's hang out, lets go to a movie."

I tell her I will, I'l call her. (and I just might).

She ends our (heart to heart) our (one on one) by suggesting I read the weekly Christian Science lesson.

"I read it every day, it makes such a difference, it really does, even if you just read a paragraph.
And take a look at the 139th psalm. And remember, G-d don't make no junk."

Something my friend Norman used to tell me.
These kind of spiritual slogans were categorically absent from my Connecticut suburban upbringing.

I say goodbye to Setterly, promising to call her, and she walks north toward Broome.

I am alone with the movie crew.

I straddle my bike and check my messages. With my cellphone and mo-ped on the cobble stone street, I feel like I might be Turin or Milan.

Oh no.

My sister has left a message about Mom. She decided to tell Mom about Uncle Winslow's passing tonight (rather than this weekend) and my mother broke down. My mother is in shock. She tells me to please call mom.

I try call her, but the answering machine picks up. So I leave a message saying that I'll call tomorrow bright and early.

I sit on my bike. I am still. My face is plain with just the slightest hint of sadness, of resignation. I solemnly stare at nothing in particular, as if by being still, by being plain and unemotional, I just might realize that all of this, these recent events, is a long and difficult day dream, not my reality, not my future. By underplaying the seriousness, I will be rewarded (somehow).

And my life feels so complex that I can't begin to untie it. If it had been just one thing, I would be crouched on my electronic bike crying, sobbing. But with (so much) at one time, I almost feel,

nothing.

I power up my bike and zoom through lower Manhattan, zig zagging in the tiny charm of the west village, past dog walkers and Wednesday night partiers, through the bacchanal of the meat packing district, and finally throttling at full speed up empty tenth avenue to midtown. And with no traffic, the wind catching my shirt, I am a movie star, I am Brad Pitt racing up Manhattan on my shiny new toy, and I feel awesome.

Psalm 139 (New King James Version)

For the Chief Musician. A Psalm of David.

1 O LORD, You have searched me and known me.
2 You know my sitting down and my rising up;
You understand my thought afar off.
3 You comprehend my path and my lying down,
And are acquainted with all my ways.
4 For there is not a word on my tongue,
But behold, O LORD, You know it altogether.
5 You have hedged me behind and before,
And laid Your hand upon me.
6 Such knowledge is too wonderful for me;
It is high, I cannot attain it.

7 Where can I go from Your Spirit?
Or where can I flee from Your presence?
8 If I ascend into heaven, You are there;
If I make my bed in hell, behold, You are there.
9 If I take the wings of the morning,
And dwell in the uttermost parts of the sea,
10 Even there Your hand shall lead me,
And Your right hand shall hold me.
11 If I say, “Surely the darkness shall fall[a] on me,”
Even the night shall be light about me;
12 Indeed, the darkness shall not hide from You,
But the night shines as the day;
The darkness and the light are both alike to You.

13 For You formed my inward parts;
You covered me in my mother’s womb.
14 I will praise You, for I am fearfully and wonderfully made;[b]
Marvelous are Your works,
And that my soul knows very well.
15 My frame was not hidden from You,
When I was made in secret,
And skillfully wrought in the lowest parts of the earth.
16 Your eyes saw my substance, being yet unformed.
And in Your book they all were written,
The days fashioned for me,
When as yet there were none of them.

17 How precious also are Your thoughts to me, O God!
How great is the sum of them!
18 If I should count them, they would be more in number than the sand;
When I awake, I am still with You.

19 Oh, that You would slay the wicked, O God!
Depart from me, therefore, you bloodthirsty men.
20 For they speak against You wickedly;
Your enemies take Your name in vain.[c]
21 Do I not hate them, O LORD, who hate You?
And do I not loathe those who rise up against You?
22 I hate them with perfect hatred;
I count them my enemies.

23 Search me, O God, and know my heart;
Try me, and know my anxieties;
24 And see if there is any wicked way in me,
And lead me in the way everlasting.

DISCOVER

Yesterday is about bills and paperwork.
I hate it.

I gather mounds of paperwork, bills, stamps, folding files, brochures, my laptop and my kitchen trash can in my bedroom,
to bait myself into paying, placing, filing, and calling. With added insurance bills, folders on health care, booklets on living wills, a care giver's guide (for me)... it's just awful.

I try to to set up bill pay (on line). Con-ed's webpage doesn't believe it is actually me that is signing up. According to them, I have the wrong personal details. I need to print something out and send it to them to prove it is me.

My printer is broken. It won't work with my new operating system, my new laptop, so I give up. I let go of that little dream.

None of these web sign in applications actually work consistently. I have been signing up for disability online.
They give you a code number so that you can return to your application whenever you like.
The code doesn't work when I go back to it. I took a picture of it. They don't recognize it.
It is discouraging. I start over.

I open my Discover card bill.

The Discover card quietly upped my interest to 30% without notifying me ( I notice, my blood racing).

I call them. The representative responds (without missing a beat)

"Oh, no problem, I can reduce that to 20%".

Discover makes a profit from people who don't carefully look at their bills.
This is cynical and un-american.

"No thanks (say I) I will simply pay off the balance, and let my card go dormant.

(FOREVER)

Canceling is a ding on your credit.

"and hey you, you on the phone, I know you need to make a living, somewhere, somehow... but you work for a dishonest company, and you are carrying out their dishonest practices and this may harm you in life (in the greater scheme of things) something to think about to consider, so ... so best of luck to you!"

(I really did say something like that)

I check my bank balance online.
I've ordered a slipcover for my tattered sofa.
Pottery Barn has billed my twice.
I sit on the phone with Pottery Barn and my bank going through last transactions and answering pre-setup questions about myself (mother's maiden name) to prove it is me.

When dealing with this kind of thing, one needs to be carried by the current and not fight, or you will drown.
One needs relax and not react.
According to Kaballah, each time you react, you are closer to death.

I take a break.

I go for a swim. I go at 7 in the evening and there are happy kids in the pool with parents. My building feels communal and nice.

When I get back from my swim, Jackie (my neighbor, my sitcom neighbor) has left me pasta with clam sauce and a refreshing summer salad on my kitchen counter. Jackie is Italian and knows how to cook pasta perfectly. It is delicious. I text her "thnx".

I check messages.

My cousin Winslow called.
My uncle, Winslow senior, has died this morning.

(I just had lunch with him at the Ritz in Naples a year and a half ago)

Old age is a slippery slope. When my aunt died, Uncle Winslow quickly followed.

I call my cousin back.

I sit on my tattered couch in the almost dark and have a formal conversation with Winslow on my iphone.
Winslow (my age) is a highly paid executive and speaks in complete sentences, declamatory sentences, like he's running a conference call. He uses my name in the middle of every sentence.

His approach makes me defended. But he is doing the best he can. This is the way he has learned to communicate. He is a good cousin to me and I am jealous of his restored Arts and Crafts home, two vacation homes, and million dollar salary.

I am sad for uncle, but he was lost without my Aunt.

I didn't know him well. But I'm glad he was my uncle.
He was an admirable man, tall and handsomely American, president of the bank, a regular guy, a direct descendant of the May Flower. When he married my aunt, they discovered that thery were actually very distant cousins. (odd)

There was conflict between my parents and my aunt and uncle.
My aunt had their parents' 1920's large Adirondack style summer home on many acres looking over Lake Michigan, secretly deeded to her (without my father's knowledge). I guess my father was hurt, but my mother was enraged.

it could be argued that it made sense, my father (permanently on the east coast) simply wasn't around.
Still, some discussion was required. I guess they didn't talk much in that family.

I don't know or understand any of that. I'll never know what went on.
But I WILL miss seeing my uncle.

PINOCCHIO

FACEBOOK:

ELLIOTT:
So.. photo of new wheels please
Yesterday at 6:08pm · Comment · Like · See Wall-to-Wall

CHARLIEROBERTS:
complications
Yesterday at 8:56pm · Delete

ELLIOTT:
How so?
3 hours ago · Delete

CHARLIEROBERTS:
The bike shorted out three times after i bought it,
I returned it and he's looking at it.
It is something to do with not knowing when a new battery is fully charged?

I got stuck in the middle of Central Park. Ugh....
He's going to call me today after much testing.
29 minutes ago · Delete


__________________________________________________________________________


Saturday afternoon, I cab to a bike store on the upper east side that specializes in electronic bikes. It is the only store in Manhattan that sells them.

Whenever I push hard with my feet and legs, that is peddle so hard that I use all of my strength, I am weakening my legs.
This has been happening more and more.


So I stopped riding my bike. I've been taking cabs which I really hate. I get no pleasure out of rollicking around in traffic, clogging up the roads, the cab driver's dismal mood, the fishing through the wallet for the appropriate tip.
All of this brings me down.

So I'll buy an electric bike.

These bikes can both be peddled and also have a throttle which allows them to go up to 20 miles an hour.
Their batteries can sustain a ride of twenty miles before having to be recharged.

This is also (apparently) how my OWN muscle power works. I can move about and walk. But I need a day to restore after too much sustained movement. My muscles (like the lithium bicycle battery) need to be recharged.

On Saturday afternoon, I cab to York and east 84th. (cab ride about $17)

I kind of like it over there. The neighborhood feels like Manhattan circa 1985, the hoopla of building and over population hasn't found it's way there (yet). Its tree lined streets with sleepy (kind of fancy) apartment buildings, elegant townhouses, boring delis and dated Chinese restaurants, bring to mind the remote, old family, elite New York. The New York in Woody Allen movies.

This bike store on York and 84th is crowded with gorgeous folding bicycles, electronic bikes, and motorized scooters for budding movie stars.

TOYS!

Everyone should indulge in these adult toys.


I try out 5 bikes.

I zoom around the east-side neighborhood. Because it looks like you're riding a simple bicycle, and because the battery is silent, it feels like your cheating, or you're pulling off an elaborate magic trick for the neighborhood... Or you're an actor in a movie, a movie that requires you to ride a bike, but you're a weak peddler or you have a star-sized ego that dictates you not exhaust your legs peddling all day, so the props department has rigged up a bike for you to make it appear that you are vigoursly biking, but in actuality, your legs are flacidly spinning, allowing you to delight in the sunshine and leafy neighborhood.


On returning from one test drive, I meet two dudes that are electric bike fans.
These are thirty-ish men who carry themselves like nerdy outsiders in junior high.
They both own electric bikes, they have come back to this shop to take advantage of test driving OTHER electric bikes.

These guys are nerds (but are also real guys). I feel the need to be accepted by them and to make sure they don't find out that (although I am a nerd too) I am a fey complicated nerd with no real interest in electric bikes. I am here out of necessity.

I am Pinocchio meeting two odd characters that are going to whisk me off to an adventure that will get me into trouble.
If I hang around with them, try to get on their good side, I will be turned into a donkey.

The last bike I try, one of my new friends insists that I try,
"Dude, you won't be disappointed"
the last one I try, is a hot sexy muscular toy that Brad Pitt might tool around in, on the back lot of Paramount.

__________________________________________

I decide after lengthy cellphone conversations with Elliott to get the big stable (white) more lady like one.

It's called "The Elegant".

______________________________________________


On Monday I go back and buy it. After a little lecture on its workings, after laying out my American Express card, after the salesman Burt, patting me on the back, and sending me on my way with a paper bag full of tools and a bike map of New York City, the "Elegant" breaks down three times within one hour.

Jondon picks me up in his SUV at 97th and Central Park and we return the bike to the shop at east 84th and York.

Bonnie & Clyde

She picks me up at the train station in Baltimore.
We drive (with Kite in the back seat) to John Hopkins Hospital.
We stop at Kentucky Fried on the way for Kite.
I eat a piece. Deeee - licious!

John Hopkins is enormous and clean and (well run) with nice people behind all the (check in) desks.

I get shown into a little room and CAR comes with me.
Kite is led to a special area for kids. I am treated like a respected film director at a prestegious film festival.

After some talk,
I am told I (most certainly) have this fatal disease and when I will die, is any one's guess. Everyone has their own path.

I sweat it out.

All of the therapists and specialists are upbeat, like I've elected to take on this disease, so here's what I should expect,
here's what I might need. Catalogs appear, leg braces, a friendly visit from the muscular dystrophy association.

I (again) try to worm my way out of the diagnosis. But the head nurse prationer is not going for it.

I get a brace for my leg.
Sign a lot of papers.

and then CAR and I decide to go out for a stiff drink.

We don't know where to go (really).

We have competing GPS systems on our phones. These little systems are SO great. So easy to get around with a vibrant map in your palm (a little moving dot) showing where you are - moving as you move. (I ponder) in my exhaustion - what other super cool modern conveniences might I miss out on?

CAR brazenly parks in front of a fire hydrant in front of the restaurant we've chosen. We eat meatballs, and have delicious wine. This is a really great charming Italian restaurant. It is so good (in fact) that I may go back.

CAR gets a parking ticket (we can see through the window) and I elect to miss my train, I decide to take the next one, incurring a $30 fee.

This is the way CAR and I are.

We are having a great time. It feels nice. We've made a Bonnie and Clyde escape from John Hopkins.
Deadly disease? Ha! I'll have the Shiraz (TWO!) and can you bring me some of that crab toast?

Usually (in this kind of escape) you are getting a way with something, and make a plan for how this scrape won't get you.
But this time, for me, I am out of luck. I am only getting a way with something while I sit in this Italian restaurant with Car and Kite. The present becomes very illuminated.

Car drives me to the train. I sit in the bar car. I write. I read. I am exhausted.

Woods Hole Film VIDEO

Woods Hole 1

Hoffman and I drive from Manhattan to Cape Cod Friday night.
We leave in the late evening.

(We learn later that traffic was so bad the following day, it took six hours to drive from Boston to the Bourne. We made the right decision to travel at night).

Waiting for Hoffman, I realize that I am wrecked from laundry, packing, and setting up food and kittylitter for the cat. I feel wiped. I feel flu-ish. I feel ready for bed. (It feels like... you haven't slept in nights, that you might have a sore throat, and that you may have fallen out of a slow moving vehicle (some time last night?) bruising and cutting up your legs, your hips. (Yet there is also this (false) sense that your body will recover)
I mean, this is what the body does... right?

I make a cup of coffee at home, put it in a saved paper cup, and sit in my fancy, shiny, clean lobby.

Hoffman arrives grinnng and gallanlty grabs my bag without asking, and we pile into his vintage, beige '80's volvo sedan.

We are off.

We are off... strutting down the Henry Hudson, hurtling across the Cross Bronx Parkway, humming down the Merrit, finally released to banal I-95.

Along the way, there is the heavy overhang of trees, of lush greenery, with the car windows down and the skyroof open, I am having sweet flashbacks to my suburban Connecticut adolescence, boating down the Merrit in my (just right) convertible safron VW, my headlights alluding to secluded real estate, to the priviledged privacy of tree-laden Connecticut.

Hoffman and I get lost, but there is little traffic so our meandering is without penalty. After Providence, we make an unintended breif visit to Wheaton College which was historic and impressive.

We get to my parent’s condo around one thirty.
Hoffman sleeps upstairs and I down.
I sleep in fits because of my late coffee and the residual buzz of late night driving.

In the morning, I find Mom at the kitchen counter with coffee and paper.

Mom and I are stiff with each other. My climb up the stairs is labored and noisy. Does this frighten her? Who am I? (these days)

(Usually) I am all smiles in the morning, eager for my morning coffee buzz. But now I am in perpetual, rankled, old man mode. What is there to smile about? I mean what the f*ck is this?

Right?

My mother, who often enjoys me and enjoys living through me, enjoys hearing about my career wins and personal stumbles,
(now) seems scared of me.

She takes the blame for all that goes wrong in her children's lives.
And I can't help but allowing a little of this guilt to grow.

Why DID you have me? This is lfe has not been good, too much mess, too much confusion, too much anguish (for me).
Look at you! You’re eighty and perfectly healthy.

We have coffee. I ask her to put on a new pot because the first one has become bitter and muddy.

Hoffman clammers down from his private suite.

My Mother loves company. I forgot this. I have not had my friends around my parents in decades because I always had the idea that my Dad wouldn’t like it. I’m not sure if this is true now. My mother is soaking up Hoffman and I am now reconsidering my decision, the last 25 years.

Hoffman and my mother are both talky people. I don't have to do any heavy lifting.

They discover (on their own ) they both went to University of Wisconsin! they both LOVE the NYT’s crossword! they like math! (all of this through the miralcle of caffeene)

During coffee, I consider how I will shower, have time to nap, and if my mother should come to the screening tonight.

There is a film-makers party at Captain Kid's in Woods Hole for the film makers at ten, my mother can’t stay up past nine.
Maybe its not such a great idea for her to come.

I have the impulse to maker her go, to experience our life, my film, her son’s film in her own community of Woods Hole. But my family has lost interest to our connection to the outside world.

(also) I ‘m worried about raining on Hoffman’s fun.

I suggest (instead) to employ my mother’s g-d given talent, the real estate tour. She is amazing at assembing facts and innuendos of suburban communal life, while weilding her SUV and relenting to her own misgivings at missing out on this or that real estate opportunity. It has the mesmerising effect that this in the only community worth investing in. And if you don't, you have missed a rare opportunity for the good life.

We drive through Ballymeade Country Club and downtown Falmouth in mom’s newish Cadilack SUV.
(In New York JayZ would drive this elegant gas guzzler)

Hoffman is up front and I am in the back. We’re like a gay couple co-broked from Hell’s Kitchen to Falmouth.

We circle Ballymeade Estates; a Cape Cod Disney Village - brandnew mini-mansions - historic rooflines, cedar shingles, plastic doors, vinyl windows.

We drive down main street, bustling and quaint.

“Kathy Bates was born here. Not that one, the one who wrote America the Beautiful”

We drive past horse farms and ponds. We drive through an organic hippy co-op villlage. We drive past Cape Cod after Cape Cod house. We drive home.

Later, we drive to our screening 15 miles away in salty, smart, Woods Hole. Hoffman drops me off at the Land Fall.

The Land Fall is one of those cavernous,nauticle, seafood joints on the water. Preppy looking kids in polos bartend amidst the hopeful glint of continued waspy summers by the sea. Sitting at the bar is like wathching the new kids of broadway, all these lean tanned summer co-eds... ah yes, what a relief, tradtional white upper middle class is (alive and well) in the beer stained fish joints of Cape Cod.

JAKE

Jake, the doorman who helped me stand up when I fell out of a cab in front of my building several weeks ago,
is in the hospital with a brain tumor. And so it goes.

email to my sister

Hi Sister-

Charlie here.

I spoke the nurse praticioner in Ct.
She will call me with an appointment in 10 days.

She used to run Columbia. She told me that there are problems up there and that Mitzumoto is having his own problems and any problem/incident had nothing to do with me.
She told me others left Columbia for Hopkins too.

Dr Belock's office called me and wants me to pay for EKG's he said I had through his office.

This man is out of his mind.
I told the accoutant that this was an outright falsity.

I would remember having a EMG for lord's sake.
She says they have a report.

My goodness.

I told her I will not pay for something that never happened, I won't have my insurance pay it, and it's this craziness on the
doctor's part which led me to see other doctors!

This guy has problems.

How does someone like that stay afloat?

I'm off to the Cape tonight.
I'll see Dad on Sunday and Monday.

I'll go back up again in August.


;- ) Charlie

I speak to ...

a nurse practicioner who specialize with motor neuron disease.
She used to run the clinic at Columbia Presbyterian.

I like her.

What I want her to say, however, is that in some cases the disease ends.
She does not say that. She does say that the disease in some cases hits a plateau.

We'll speak again in two weeks.

BOOK

I ordered a book from Amazon.
I thought I was getting a book concerning (mind over matter).
Turns out, it's about Kabbalah.

The next time you see me I may have a little red string tied around one wrist.

THIS IS NOT AN EXIT

At Tenth Church on Wooster Street tonight:

He that believeth shall never see death.
The only inevitable is eternal life.
Divine love insists that there is no loss.
Refuse disease (error) pray and refuse!


I am friends with the people of 1Oth church now.

I particularly like Setterly, a tall blond woman with good humor and a social bent.
She always compliments other's testimony. She's always grabbing someone (at the end of the service) to grab a bite in SOHO.

She is a good person to have around.

After the service, by the front door on Wooster Street,
Setterly tells me that her mother (a devout Christian Scientist) died a few years ago in her early sixties.
She tells me her friends questioned Setterly about it. How could she die if she was a Christian Scientist?"
Setterly tells me she thinks her mother made the choice to die. She was unhappy in her marriage, a marriage she couldn't escape, so, she chose to leave.

Setterly also tells me that she went to a funeral last year for a good friend.
Adjacent to the coffin, above a door was the sign, "THIS IS NOT AN EXIT".

CAR

Hi CAR,

I'm going to Hopkins this Tuesday the 28th.
Appointment at 1:30 for a three hour clinic.
I'll take the train from Penn Station.

Charlie