Sunday, September 13, 2009

patients like me... I guess.

I sit around and read from the website "Patients Like Me".
I look for patients that are my age and sex.
I want to get ideas for supplements and therapies.

I find Drew.
Drew is 36, male and from Stamford Conn.

Oh good.
I go to his profile.

Nice looking guy, a hockey player.

I read,
he's been to China three times for stem cell therapy!
He is charged up.
He writes he's

"HELL BENT ON BEATING ALS AND I'M NOT MARRIED AND I DON'T HAVE ANY KIDS- ALTHOUGH, I WANT THEM! ... I THINK THROUGH HARD WORK AND RESEARCH - WE CAN BEAT ALS."

I like the way this guy thinks. Why was I listening to that doctor at Columbia Presbyterian?
I should be going to China. This guy is on a lithium too.  Something my doctor discouraged.
It could make you worse,  he said.

Drew doesn't care, and neither should I.
It's my life and I want to fight this thing!!

There are photos of Drew swimming. Pictures of him with his PT.
And he has a blog!
(I should write in my blog).

Let me go to his, and see what his blog is like.

And I read;
Our Drew lost his battle with ALS on Tuesday April 7, 2009. His family would like to thank all of the people who made Drew's journey a little more bearable by following his blog, leaving notes of encouragement and comments. He will not be forgetten.
Thank You,

The Schroner Family


Saturday, September 12, 2009

the long walk home

I bike to a doctor's appointment on 42nd and Second Avenue.
It's raining.

When I am done, I get on my bike and realize that because of the heavy rain, my brakes are not working at all.

So I walk the bike home.
I decide to make a day of it.

I will pause and sit and rest along the way.

It takes me eight hours.

 I get home at 10 o'clock.

Thursday, September 10, 2009

BILLY ELLIOT

I get stuck in the apartment because cooking and cleaning and dressing takes so much time.
I want to empty the place.

I did tackle some calls to the doctor for my SAG retirement.
And I opened some bills.

I called my mom because she texted me about her coming visit.
I told her I found friends to take the additional (expensive!) orchestra seats for Billy Elliott and she told ME that my brother was coming after all.

I went through the roof.

I was angry because I emailed him requesting him to visit and join us , but instead of emailing ME back, he calls my mother (I guess?) and says he'll come.

Why can't he email ME?! I just assumed when I didn't hear from him that it was (out of the question), that he's overwhelmed.

Maybe he called my mother to tell her he didn't want to come or couldn't get away and she strong-armed him into coming (since I have this fatal disease) and he simply hadn't gotten around to emailing me back with a "yes". (this is likely the case)

I"ve  given away the tickets.

My rage (on the phone) made me think about how I wasn't acting with love and truth.
It doesn't really matter. The tickets.
I was acting out.
But, I feel sad that my brother can't email correspondence with me.

So...

I swam in the pool.
I made an appointment to get gluthotione intraveniously tomorrow and to see the accupuncturist.
I got on my bike to go grocery shopping and got all the way down to Whole Foods in Chelseas and realized I left my wallet at home.

I biked back through Chelsea by the West Side Highway.
It was packed, (and I mean packed!) with the young art crowd.
It was 7-ish. I was reminded of Halloween at dusk when the neighborhood is over-run with kids.

I came home and sat in the lobby and read a book.
Later, I signed up for an organic food delivery service and made a tepid order with Food Direct for basic groceries. I'm not a food enthusiast. So buying food is a chore. If I could, I would drink coffee and eat corn chips all day.

Falmouth Cape Cod


Falmouth Cape Cod
Originally uploaded by Charlie Roberts

Wednesday, September 9, 2009

Pockets of Perfection




I return the dented car to AVIS in Stamford Connecticut today.
It takes me hours to get out of the apartment this morning.
I didn't sleep well last night because I have been thinking about that doctor who is suing me to pay for tests I never had. I am frightened and enraged.

I pick up the car in my garage and drive toward the George Washington Bridge. I fight with the doctor in court (in my mind). I don't pay attention and end up long into New Jersey.

I pay an $8 toll to get going the right way back on 95 north.

In Connecticut, I stop in Darien and go to the Thrift Shop.
Darien has changed so much. It used to be clapboard gift shops and rickety Vitorians.
They have been ripped down and replaced with a corporate Brooks Brothers mall.

But the Thrift shop is still there (with a new corporate sign)
I buy a kitchen clock for $4.

I return the car in Stamford and tell them about the dent.
"What's to be done with me?" I ask the surly Avis clerk.
The guy writes me off. He does. I have a limp and a weak voice.

"Once I fax the report, they'll contact you."

He answers me without even bothering to look at me, as he walks away, talking to a friend or fellow employee. And he is right. How could I raise a ruckus? How could I be indignant? I can barely speak or walk.

I sit outside of Avis. There is that eerie late summer, early fall, cricket sound.
The sunlight doen't seem quite right.

I don't know when the next train is but there is nothing on my schedule for...

the rest of my life.
So I stand there and lean against a wall in the early autumn light and sob.
I cry for my circumstances. I think, I would like to make plans to get out of here, away from CT away from New York. I am sick of this area. How did I end up stuck here?

And I sob because I can't really leave. I have to stay by people who can help me.
Unless I kill myself. And so I check myself, I scan my inner core to see if that's possible (yet).
Am I capable of it, (yet)?

I wander through the Stamford Train station. I buy coffee at Dunkin Doughnuts.

There is a smart young looking handsome man costumed in a tidy suit. He has a polished haircut and tan, and he would be marked as instantly gay by me because he is too perfect looking, but he wears a wedding ring.

I imagine that I look like a lost, sad, clumsy, tubby man.
I don't even register.

I ride the train and read the New Yorker. E L Doctorow's new book "Homer and Langley" (about those brothers who died in their own trash in New York) critiqued by Joyce Carol Oates.

She uses the word "lurid" a great word. I look it up on my iphone dictionary.

I also read a book by a man who's life was changed through Christian Science.

At Grand Central. I must hold on the side of the dirty train to get myself into the station, off the platform. My hands are black with soot. A conductor walks by and smiles (takes pity on me).

In the station I must use all of my focus to get across the grand room.
When someone makes me stop abruptly, I say aloud (like a crazy person) "Oh no, please no."
Because if I stop too quickly, I fall over without a wall to hang onto.

I get my camera out (my flip video camera) and film my staggering through the station.

I used to work in recording studio nearby. I imagine running into those guys.
What would I say? What could they say?

On 42nd Street, I decide to see if I can get the M42 bus, but it's too hard, so I get in a cab.
The cab driver wants to drop me off a block before my building (traffic is terrible) but I start to protest and he remembers my staggering limp and backs off. Even a New York taxi driver doesn't want to be cursed for betraying a gimp.

I eat fishsticks for dinner and bike to church.

Tonight's service is about not being the victim.

HA!

I listen to testimony. I believe. I feel relief.

I let Arc, a man in his fifties, a former anchor for CNBC, test my bike out on Wooster Street.

I bike home. the battery runs out and I cycle most of the way home. This is a nudge from G-d.

I want to leave NY sometimes. I really do. But where would I go? And the thing is, there are pockets of perfection here.
\


Falmouth Cape Cod


Falmouth Cape Cod
Originally uploaded by Charlie Roberts

old time(y) shutters

Falmouth Cape Cod


Falmouth Cape Cod
Originally uploaded by Charlie Roberts

This house has a corsage.

Falmouth Cape COd


Falmouth Cape COd
Originally uploaded by Charlie Roberts



Tomatoes along the bike path.
25 cents each

dent













I drive home from Cape Cod.
Before I pack the car, my mother backs into my car and dents the front.

On the road, I sit in silence. I have fights with people in my head.

When I get to New York, I'm not so happy to be there.
I put the car in the garage.
I pick up my mail. I get a letter from some county clerk office.I think that a doctor is sue-ing me.

I don't know.

Today I'll drive back to Connecticut with the car.

Monday, September 7, 2009

spontaneous acquiescence

I think this Buddhist wisdom perfectly describes the actor in rehearsal.


The right attitude for studying the way is just complete spontaneous acquiescence. Who cares whether it takes twenty or thirty years; you'll be naturally at peace, without the slightest bit of doubt or confusion. How can there be any obstruction again after spontaneous acquiescence? How can anyone arrive by way of externals?

Sunday, September 6, 2009

feet


feet
Originally uploaded by Charlie Roberts

Saturday, September 5, 2009

Falmouth Cape Cod


Falmouth Cape Cod
Originally uploaded by Charlie Roberts

The excellent bike path in Falmouth Cape Cod.

Friday, September 4, 2009

HE'S JUST THAT NOT INTO YOU







There is a new bike path in Falmouth.
This bike path is gorgeous.

It bgins in East Falmouth and ends in Woods Hole. It winds through cranberry bogs (postcard worthy) - water inlets, and fragrant wooded areas that fill one with the hope and enthusiasm for (the end of the day ritual) of (wine on the deck) and seafood dinners.

I love it.

And having been suspicious of Falmouth (too close to Boston, too suburban, too many standard issue Cape Cod houses) I now (through this excellent bike path) have fallen for this part of the Cape.

This bike path cost 3.5 million dollars, courtesy of Ted Kennedy. Kennedy slipped it into some bill or package? What do you call those things? Those bridges (built for no good reason-that go no where) in the state of Alaska, paid for with Federal money?

Pork barrel!
(is what I think they call it)
This waste of federal money is a huge success! (to me)

"I wonder if Texas or New Mexico realize their tax dollars, their wages, have gone into sprucing up my summer community?" my mother digs.

I let her Federalist leanings hit me like a feather. I dig this bike path.

Thank you Ted Kennedy. (and all other 49 states)

I can bike directly to my father's hospital.
It is right on the path, as is the picturesque Chapaqoit Beach. It backs up to amateur tomato and flower stands. It backs up to a campground with Tee-pees and the smell of cedar-brush wood fires. It has bracing views of the harbor and easy access to main street Falmouth.











At noon I begin my ride.
I bike to Block Buster to return "He's Just Not that Into You" -(terrible)
My mother and I have been watching chick flicks all week. These films are enjoyably formulaic. "The Holiday" (preposterous) has been the best so far.

Next, I bike to Chappaqoit Beach.



It is 74 degrees and scarily sunny. I load my body with sunblock, "glue" as my mother calls it, and lie on a big rock. The ocean is sparkling and warm (I'd wager) but I don't go in. I don't go in because my legs aren't strong enough to walk my body out of the water. This is okay. I've had a policy

(for much of my life) that if I was near the water in swimmable conditions, I must go in.

(this is true)

So today I have no regrets.

I continue to the hospital.
As I pull up to the entrance, I spot my mother in her SUV.

"Mother!"

My mother makes a surprise face.
My mother rolls down all of the car windows at once, finding the driver's side window, last.

"What - are - you - doing?"
"I'm going to get USA TODAY for dad (a guilty pleasure for him) and go for a visit."
but cars have pulled up behind my mother forcing her to drive away without comment.

My dad has been at this hospital for two months. He has lost 20 pounds. He can't walk anymore.
We've never seen his doctors (really).

In order to get attention there, my mother is a shrew.
She is notorious (there). But in her defense, this place is lax and weird.

(Don't get sick in Cape Cod. Fly to New York, train to Boston, shuttle to Florida, but do NOT stay in Cape Cod. This is the lesson we have learned, have been taught)

My father's room is in the center of the hospital, down two long corridors with hand railings on each side. I don't use them. I decide to practice my walking. I remember (from Feldenchrist) the spine naturally twists as you walk. I practice this motion down the two long hallways.

My father's room is empty. I sit on the end of his bed and answer my I-phone.

It's Jackie, Jackie my (sitcom neighbor) from New York.
She is 72. She's lived in New York her whole life.
We see each other every day.

The sun pours in through the closed windows, the air conditioning hums, Chapaqoit Beach seems in a different state.

"Hi Jackie"

"Chawlie did you call me?"

"Yes I did. How are you?

"Chawlie I'm not doin' so good. Aroo (the cat) is good, he's fine, he slept on my lap for forty-five minutes today. But Chawlie, my fellow, that GUY called me again. He called me to tawk about his ex-wife, his ex-wife who wrote the lyrics to "Lollipop Lollipop" She's bein' given some award or somethin. She's getting a (three thousand dollar a month apartment) on 26th and Park! Chawlie! Why does he call me? and tawk about her? He never asks about me! I told him I have an audition for "Who Wants to be a Millionaire" and he didn't even ask me about it. He just kept tawkin about HER!

"Jackie! Why do you take his calls? You've got caller ID, don't you? Simply don't answer his calls.

"Chawlie, I don't seek these calls out. He calls ME. What am I supposed to do? What does it all mean?"

"Jackie, have you ever heard of the movie "He's Just Not That Into you"?

"I read the book Chawlie... I read the book, oh... last year, I think.

"Well I rented the movie last night, and it wasn't very good but..."

"Do you think it'd help Charlie?"

"yeah, I mean, its kind of stupid, but in a way, that stupid movie advice is really kind of true."

"okay Chawlie, I'll rent it. I'll rent the ..."

"Gotta go Jackie, my dad is being wheeled in. I'll call you later."

"okay, bye Chawlie."

My father is wheeled into the room by two strapping young men who talk to my father like he is sweet and ancient and simple. My father allows this.

"Hi Dad"

"Hey Charlie"

"Where were you, PT?"

"Getting new x-rays which was an ordeal. They put me on a stretcher in an ambulance. But when they lie me down for the x-rays, there is some bone, some small bone in my back that protrudes. And when it hits the table, ... JEEZ does it hurt. It hurts like hell. I asked the doctor about it, it really hurt."

"Maybe it's because you lost all that weight, did you think about that? Maybe it's because you lost too much weight and so now your bones are sticking out."

"Well, that's right, that's probably right... I'll have to ask the doctor about it."

(pause)

"I brought you USA TODAY."

I have often (through the years) brought my father the New York Post. That paper smells of New York of the commuter world, of his old working life. (I often read it for Page Six and the theatre columns and Liz Smith) There weren't any Posts in Falmouth today so I brought him USA Today (instead).

"Well, look at that. Thank you... it's really shrunk."

"Yeah, everythings shrunk these days. Look at the New York Times Magazine. It's puny now!"

My dad opens USA Today and I read the Falmouth Enterprise.
We sit in matching vinyl recliners by the bay window.

I read an op-ed piece by a psychiatrist living in the area who urges his fellow Cape Cod citizens to wear helmets when they ride their bikes. This call for safety was prompted by the excellent new bike path. The psychiatrist tells a cautionary tale of (almost) being killed (had it not been for his helmet) "Most people, most ADULTS don't wear helmets, what is to be done about it?" he asks.

I don't use a helmet because as soon as I buy one I loose it, I leave it somewhere. And even when I have one, it never fits right, so that If i was in an accident, it really wouldn't help much.

Still, he convinces me.
It would be bad to have a fatal neurological disease AND brain damage.

My train of thought is interrupted.
My father laughs at something in USA Today. He doesn't share and I don't ask.

A nurse stops in and grins, "Well, I can see the resemblance, you two are identical!" and since my father looks like shit, I stare vacantly back at the nurse in the manner of Pugsley Adams.

Amother nurse, Dave, a male nurse, handsome and pudgy with a clean bald spot on the back of his head, offers ginger ale to both of us. Dave is my age, Irish and agile on his feet (I observe). His motor neurons render him sexy and heroic (to me).

As we sip our ginger ale, I tell my father that "I've been to the beach but I didn't go swimming because my legs are too weak to pull my body out of the water. My legs are not unlike your legs dad, in many ways, you and I are in the same boat."

and I add, I ask, I am compelled to ask because this is MY question, MY life preoccupation, this is my lot,

"but, I still look okay, right?
I still look fine?
I mean I don't look unhealthy?

(pause)

Do I?"

And my dad says,

"Why, I should say not." Like he's Robert F. Buckley or something.

I like that... "I should say not."

I check the wall clock, it's five o'clock.

"I need to go."

"Where you going?" he asks, he reacts. He clearly doesn't want me to go.

Just sitting and reading with your dad, a friend, anyone, is about the nicest thing you can do. (I realize)

"I have to go, I have to get back to Blockbuster.
And I need to buy red wine. So expensive at your local liquor store. Nothing under ten bucks. Really overpriced."

"Well... that's right it is."

It occurs to me later that I might be torturing my father with my talk of wine. He hasn't had a drink in months. He still (cheekily) asks the nurses if they've brought him his cocktail when they deliver his lunch of dinner.

"Well Dad, I'll say good bye."

"But I'll see you tomorrow."

"You'll see me tomorrow."




I zoom down the bike path homeward bound.
At Block Buster, I rent "The Duchess" (overwrought),
and at the over-priced liquor store, I buy some Malbec from Argentina for $13.99.

I go to the gym and work out (using only the ten pound weights).
I shower and blow dry my hair. I flatten it into submission.

It's a cool, sunny September night.

I decide to bike for a bit after my work-out. Not on the excellent bike path but around the Golf country club. I zoom past my parents condo and into mcmansion land. The houses are slightly unreal, like they've been created on a hollywood back-lot. They look like gaudy illustrations from a children's book, too many window-boxes, too many gables, too many roof lines. They look too tarted up (for my taste).

And I get lost.

The roads and houses seem identical.

I get VERY lost.

In the dusky light, I pull my bike off to the side of the road and call my mother.

"Where are you?"

"I'm lost."

"What street are you on?"

"Equestrian Lane?"

I hold my i-Phone to my ear as my mother guides me home, passing house after house, motoring through the eerie development. I pull into the garqage just as the Septenber sun slips away. .






Sunday, August 30, 2009

DRAG










Saturday and Sunday, it rains in Cape Cod.

It's a thick consistent, cold watering, a chilly reminder that Labor day is here.

So I remain inside my parents' condominium, the condominium attached to the country club golf course.

I sit in a tub (a spa-type whirlpool) off the master bedroom. My parent's have never used it.

(it's noisy and feeble)

Sitting in the tub, I try out various vocal and diction exercises to strengthen my withering "old man" voice.

1. The first paragraph of Nabokov's LOLITA
2. "What a to do, to die today
3. "Sally sells seashells..."

In recent years, I'd get up and work on a MOZART aria, every day, sometimes twice a day, trying to deepen my range, polish my neglected talent.

(Now) the plan is, that whenever I take my supplements (3 times a day) I will stop and do five minutes of diction and vocal work.

This is hard.

Because, when I confront my losses, I'm overwhelmed. When I am presented with my immobile right foot (for instance), my mind spins into "wounded animal" mode.

I want to gnaw my way out (out of the disease).

Indeed, this is how some people deal with the end of their life.

They chew their way out.

In my tub, after three minutes of simple diction exercises, my tongue and throat rebel. My vocal chords gag.
I sound like the girl from THE EXORCIST.

(My agent called me a couple of days ago with some cold bookings for PIZZA HUT.
I emailed back,

Bobby-
Charlie here.
So very happy to hear from you.
I am (alas) not in top form.
This means, my voice is crap.
They would find me somewhat limited at the booking.
I am working on it, but I am out of commission for now.
I will call you with more details.

;-) CHARLIE

But I never did call him, instead,

after my tub, I decide to confront the madness of my massive paperwork.
The rain invites me to take it on.

I stumble down to the lower level of the condo. I arrange my insurance statements and bills, my various tests results, my application for my SAG pension, my statements from social security, in piles on a card table by the computer.

It rains. The sliding glass door is open to a brick terrace with an umbrella table and four matching chairs, a view of the golf course beyond. The trees are mint green, the sky is silver.
The air is cool and wet.

The paper work overwhelms me.
The rain drugs me.

I move to the sofa.

I lie there. I am sapped.
I only have "get up and go" during my morning coffee or after my third sip of Shiraz.

I hear my mother padding down the stairs. I turn on my stomach and spoon a pillow.

My mother joins me in the cool, dim room. The room is defined by the rain.
She sits in a nearby overstuffed chair (green with butterflies) and puts a throw pillow over her midsection.

We are at sea.

We could go to the movies,
but all of Cape Cod will be at the cineplex today.

I ask my mother to look though my father's video collection. She calls out a list from a nearby bookcase.
(my father enjoys war-movies and westerns)

My dad's cable system has 5000 channels. I find it difficult to navigate. I can't find any of the real channels.

There are lots of infomercials about clearing up your skin, flattening your hair, or makeup made from minerals grease free and a part of your body's own natural chemistry.

I watch these progams. I watch them like a six year old watching morning cartoons.

I imagine what the lives are like for the people who are IN the infomercials.
(They live in oppressive over decorated homes in the Valley)

I wonder how the people on the shows manage to be so simple and committed, so awestruck by the product... this hair flattening device.
(I suppose these are shot in LA and living in LA renders one shameless)

And I am taken in!
Does being able to flatten your hair (so easily and readily) truly make for the kind of life changing experience they suggest? The women's reactions to the product are so committed, so positive! It's seductive.

I want flat hair too! Forget my ALS medications, R-(+)-pramipexole and rilutek!
If I flatten my hair, it will shine and behave! This is important! THIS is life.

I move on.

I see what's been saved to TIVO.

There's "The Third Man" and "Some Like it Hot"

I push the button for "Some Like it Hot" without consulting my mother.
As the credits begin, my mother says "oh. I love this movie" like it came on by itself.

(My mother who makes puts and calls in the stock market daily, is clueless about the workings of the TV, clapping her hands in amazement when you surf from channel to channel.

I (actually) am ambivalent about watching this movie, mostly because it's on the "top ten list" of the funniest movies of all time.
And while I admire its skill, I've never laughed out loud watching it.

Also, there is something dark and weird about Tony Curtis and Jack Lemon, something frightening about their drag. These are horsey, scary ladies. And the men in the movie are constantly hitting on them. The women seem blithely unaware.

All of this troubles me.

As the movie proceeds, my mother again, tells me that she loves this movie! She's seen it at least twice. (A lot for her)
She saw it in the theatre in 1959 and at least one other time she can't remember.

"Jack Lemon is so good, he's kind of like Jack Nicholson, he plays around in different roles.
Look how pretty Marilyn Monroe is! Poor thing, you know that John and Bobby Kennedy really destroyed her."

Ted Kennedy has died this weekend. I think my mother is the only person in Massachusetts with no regrets.
(There are flashing neon signs along the highway that say " Thank you Ted Kennedy" or something like that)

"A lot of people respect and adore him" I tell her.

"Who?! Just the Catholics in Massachusetts."

"NO! He's respected on a national level! Every living president is sitting at his funeral right now."

(My mother can't forgive him for Mary Jo Kopecky)

I tell my mother "I'm going to find an "I REALLY DISLIKE THE KENNEDY'S - FAN CLUB" on Facebook (for you)."
This suggestion is lost on her.

As Tony Curtis eggs on Marilyn Monroe to kiss him, I look over at my mom. She's laugh-crying, tears running down her cheeks. She holds her index finger to each eye to wipe away her tears.

And through my mother, I see how funny this movie really is. The actors are so committed to the ludicrous setup.
They play it like live theatre.

The writing comes fast and sharp.
The chemistry is magic.
Marilynn Monroe makes the conceit of the drag work because her ethos is so childlike and gullible.

By the end, I'm aware of the character's flaws and worry about the choices they've made.
This is not what the movie intends, this is where my head is (these days).

I think Marilyn Monroe and Tony Curtis will fight when the sex gets boring. Marilyn will become an alcoholic.
As soon Jack Lemon gets away from the resort and on steady ground, he will punch that old guy in the face.

My terrible disease forces me to think more practically about life's decisions.


___________________________________________



The next morning, Sunday, it's still raining.

My mother and I go to the Episcopal Church off the main square in historic lovely downtown Falmouth.
We get there at eleven, an hour late, we get there just as they're beginning communion.

My mother immediately joins the line for communion and (over-shares) with the lady running the line that only SHE will be receiving communion today "as my son (pointing to me) has difficulty walking". I rap on my mother's hand to stop her, "she doesn't need to know that!" I wine, like a gruesome teenager.

After the service, we let everyone file out in front of us.
It's a crowded church. The usual suspects. Mostly white senior citizens, men in madras, navy blue blazers and natty ties. The women in various summer pastels and flower print dresses.

As we wait for the church to clear, I notice an odd looking woman in the pew directly in front of us.
Her hair is thick and lush and out of control, like she put it in curlers a few nights ago and hasn't touched it since.
She wears a white button down cotton sweater over a pastel summer dress. Her lumpy shoulders are rounded over.
Poor thing, she's been trying to hide her size her entire life and now she's all collapsed.

My mother and I stare at the woman. The woman is a man. This man is dressed like a woman. The man-woman talks politely to an older preppy man in a rep tie next to her. We know it is a man but she doesn't care. She is blissful. The older man, the passers-by, the congregation, joins in her fiction, accepts her dominion.

I stare with icky fascination (I am troubled) but after awhile, there is nothing left to do but accept.