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.

Connecticut 1974

New Canaan 1974
Originally uploaded by Charlie Roberts

my right foot

my right foot
Originally uploaded by Charlie Roberts

SILLY hopes SILLY love songs

I am stuck.

I am stuck in my hotelish one bedroom apartment. I am caged in my newish air tight high-rise that shadows the aged Hudson River.

I am glued to a bar-stool poking away on my laptop.
I have made the switch from the couch to the kitchen counter.
(Once I fall into the couch, there is very little that will get me up)

I surf the world wide web searching for diversion, but instead, I am made aware (through banner ads like “ Best Summer Vacation Deals for the End of Summer" or the anxiety inducing (back to school ads) I am made to understand that this is the end of summer. This is the week before Labor day.

Ah, yes!

I scan my memory for justification of my last three months.

June, July and August have been about giving into the couch, giving into the rain, and giving into the drama of my terrible disease.

This summer has been about the complications of returning a vacuum cleaner, buying a battery operated bike, signing up for disability.

All the big ideas for my life, all of my nervous and angry ambitions have been reduced to making the kind of small practical decisions a very old person makes.

(I must remember to pick up milk for my morning coffee...Where shall I get it? How shall I get it?)

Poking at my mac, it is clear to me that I must leave the city for the last week of August, if only to be like everyone else.

How to do it?

I often have focus/attention problems, bumping into my own thoughts, my relentless interior dialogue reducing me to the ball of a pinball machine. I'm flipped and propelled in different directions but I never really maintain a clear course.

So I always make a list. I make a list of 20 things to do in the apartment RIGHT NOW.
(I don't rate the tasks in order of importance, thinking, would allow me to spin, to bounce, to ding! ding! ding!

I scrawl a "to do" list and tape it to the kitchen counter. I set the oven timer for one hour.

Go!

Counters are scrubbed, newspapers stacked, dishes tossed in the dish washer, the sink and faucet in the bathroom wiped clean, my bed neatly made, the cat's water replaced.

When the kitchen timer beeps I’m still lost, but enough clutter has been cleared that I'm able to consider my paralysis more objectively.

I need to experience summer.
I need to go to TRURO to visit my YOUTH HOSTEL that I've gone to (by myself) for the past ten years.

It’s in an old farm house on the National Sea Shore! It’s so rundown and shabby chic that (to me) it is sublime elegance.
And the surrounding dunes, the views of that great sea shore, are stunning!

One year George Bush had a campaign party in a house near this hostel.

All of the European types, the budget minded Americans, reading old National Geographics on terrible, wonderful, dated, donated couches in ]this roomy old farmhouse planted by the enormous sea, while an upscale party for the president glows in the dunes nearby... this to me, is perfection.

However,
To get to my hostel, I will need to drive.
I haven't driven a car in a year.
I will need to rent a car that is large enough to stow my over-sized battery operated bike.

Fear rears its ugly head.

I am afraid that when I get in the car, my lame right leg, my STUPID drop foot, will not give me the proper reflexes in bumper to bumper traffic.

I am afraid that I will walk into Avis and the man behind the counter will see me limp to the check-in desk and whisper " we can not allow you to rent this vehicle Mr. Roberts, given your disability".

I will nod and walk away with solemnity, as if the Avis man himself had reaffirmed, made sure that I understood the ramifications of my diagnosis. YOU HAVE ALS, PEOPLE WITH ALS DON'T' DRIVE!

But I KNOW that fear is error. I KNOW this from life experience, and I KNOW this from the teachings of the Christian Science
Chruch.

I know that,

"Where there is a will there is a way".

and I know

" G-d hath not given us the spirit of fear; but of power, and of love, and of a sound mind."

I will seize the day. The day will be about discovering my driving capabilities.
Lets deal with this, shall we?

I make a reservation at Avis in Stamford.

I take a cab to Grand Central. I train to Stamford. I walk to the Avis across from the Stamford train station.
At Avis, there is a Toyota SUV waiting for me, big enough to transport two or three battery operated bikes.
I (in fact) have an "Avis wizard number" so the rental requires zero paper work.

The car is big, high, roomy, and silver. it looks just like what all the other folks are driving these days!

(I will fit in)

It doesn't have a key, more like a key chain you insert in a hole. There is an on off button!

I take my leg brace off, and maneuver my way around the cavernous, dark AVIS garage.

It’s okay.
My feet respond on cue. I am on point. I am still in the game.
I can do this!

My shaky, old man, adrenaline kicks in (this shakiness that I've always had, which I had as a twelve year old) but I am driving fine.

And I am on I-95 with the rest of humanity. F*ck it. I will drive this SUV across the country!

(But instead) I drive into Manhattan. It’s a breeze.

I nap.

I get up from my nap and I set the oven timer for an hour and tape a list to the kitchen. This list is a list of twenty things to do in no particular order.

When I have completed my twenty things, I am back on the Henry Hudson, this time driving North.

My drive includes periods of (bumper to bumper) traffic, of multiple car accidents, and of a down-pour so thick and frightening that I'm forced to pull off the road.

And for much of the trip, I sit in silence. I let my mind go. I think about people. I argue with people.

I decide, I imagine, that this diagnosis, these projections for my illness, rudely forced on me by the web, lectured (with condolence) to me by somber health professionals -

(I told the head nurse at Hopkins that I know it may sound silly, but I still had hope that I would recover from "this" or at least maintain my health, and she said... "if that's what gets you through the day, good for you!")

- these people, these expectations are wrong. They are wrong.

I construct hopeful scenarios, tiny dreams of success and accomplishments. Less than what I (dreamt of) for myself before, but still, larger than what much of the healthy population hopes for.

Near the end of my car ride (after Providence before Fall River) I flip on the radio. I find, I listen to George Gershwin's "Rhapsody in Blue". This is a man with dreams. This music is divine.

And then I come across Paul McCartney's "Silly Love Songs".

This song transports me to station wagons with wind-down windows, to a New York suburbia of unlocked doors, little traffic, and plenty of undeveloped land for dogs to roam freely, to a time (for me) where disease and disappointment happened to OTHER people, people who just had the wrong idea, to a time when the future was unknowable, without ending, and mine for the taking.

http://www.youtube.com/watch?v=AK9QVN0bpa4

west 95th

photo.jpg
Originally uploaded by Charlie Roberts

(and I am up)

Today.
I call two alternative doctors.
I stretch in the shower.
I "bike" to Chelsea.
I get my hair cut at Chelsea Barbers.
I have the door held open for me as I leave by the woman who runs the place, who owns it.
I have two hotdogs at F&B Gudtfood on West 23rd. meh.
I totter across the street to the Chelsea Cinema and the movie is sold out.
I totter back across the street.
I fall.
I lie on the pavement.
I lie there as people pass.
I look around for something to grab onto... nothing.
I think, I think how am I going to stand back up?


"You need help?'
"Yeah, I do."
"Did you hurt yourself? Did you break something?"
"No, I'm fine, can you, can you help me up?
"Sure I can help you up."
"okay, thanks, watch out because I'm kind of heavy."

(and I am up)

"Thank you so much."
"Are you sure you're okay."
"Yeah, I'm fine, you see I have weak legs. I have a neurological disease, so when I fall, I can't get up by myself. I'm actually fine, I'm going to get on that bike over there, believe it or not."
"Well, you take care of yourself, okay, you take good care of yourself."
"I will, thank you, thank you so much."

I bike to CVS and buy ear plugs for swimming and super glue for broken sunglasses.
I walk in, an employee spots me and insists that she look for my merchandise while I stay where I am.

I bike home.
I swim in the pool with my new excellent ear plugs.
I glue my fingers together trying to mend my trendy sunglasses.
I talk to Mattie on the phone about getting an alternative doctor in the city, about the power of nutrition, about falling down on west 23rd Street and being helped up by a kind stranger.

GETTING CRUSHED

After working out and swimming, I'm wiped.
I can't sleep and I'm too tired to read.

So I go for a bike ride.

I'll motor to Riverside Park.

I want to lie in grass and stare up at trees. This is difficult for me because once I lie down, I can't get up without grabbing onto something, or getting help from a stranger.

Mike, my doorman, opens up the bike room for me as Rick and Karen sweep into the lobby.

I've worked with Rick and Karen at a summer stock theatre. I've been in a dozen shows with Rick. I quit working there years ago (for dubious reasons) but Rick continued. Now he is back from that theater, glad-handing all the doormen, happy to be back, triumphant in his return.

I'm in the back of the lobby where Rick can't see me. I recede, I slide anonymously into the bike room. I feel crushed, physically crushed.

And as I mount my bike,

(I lift my leg with with m right hand over the low-bar of the the bike)

I consider if I SHOULD leave New York. This might be too much. Continually comparing myself to others,
continually explaining myself to friends. The awful spectacle.

But in minutes, I'm on my bike, passing other slow poke cyclists. Using the hand throttle, I can quietly pass other bikers going full speed at 20 miles an hour. My legs are moving but I'm not breaking a sweat.

Riverside Park is gorgeous.
There are plenty of lush and peaceful spots. I (however) need to be near something sturdy so I can right myself.

I choose a spot behind a park bench.

I lie by the side of the large paved pathway (french-like in style, I think - more of a pedestrian boulevard than a sidewalk).
I'm two feet from gravel, peering through the slats of the park bench.

Lots of dog walkers in Riverside Park.

I stare at the dogs and their owners. Peeking through the slats of the park bench, I glumly stare at their world. The owner and pet are silent and solemn in their daily ritual. They are of like mind, but somehow the dog has more power.
The human is responsible to the dog.
The dog needs this walk.
The dog knows this is their time. The human (while enjoying the walk to a degree, worries if this is the best way to spend their time. The dog is confident, the dog is resolute that this is the best way to spend their time. This confidence gives the dog power.

This is why I was reluctant to get the cat. The cat knows what it needs. I don't know what I need, but I must comply to the cat's needs.

(damn cat)

After (some amount of time) staring through the slats of the park bench,

(if I hadn't had a bike next to me, I'd be mistaken for a careless drunk ... too lazy to venture further from the path)

I glide down to Battery Park.

I cross through SOHO to the east side.

(SOHO at dusk is the best, one of the nicest places to be in the city at that hour, I'd wager).

I get dinner at Fat Dumplings on east 11th. This is a great place. The food is cheap and tasty.
The owners set you up right. I had six dumplings and a ginger ale.

Diet coke is my usual, but there are WARNINGS about fake sugar.
There are articles, blog entries, theories devoted to suspect fake sugar.
Some conjecture that it may induce ALS.

At home, I turn on the air conditioner and fall asleep in the cold.

I have a dream. I dream that there was a biological disaster. Human beings have deformed into three categories.
Giants, normal sized people, and humans the size of mice. The tiny humans keep getting crushed in their tiny cars.

THE MIND, THE SOUL, THE SPIRIT,

PAINTING ROCKS

Sunday morning, I biked down to church for the eleven o'clock service.
At first, I couldn't get my bike to work. I struggled with the throttle.
I imagined my day, making annoyed calls to the bike store on the upper east side, the cab ride up there with the bike tied down to the back of the taxi.
But before giving into hopelessness, I paused, and let last week's testimony to sink in.

One thing that they teach at the Christian Science Church is G-d's infinite harmony.
Clue into G-d and leg go, harmony is always there.

So, I let go of frustration and by bike eventually worked.
Biking down the west side highway, I was bugged that I would be too late.
But I only was five minutes late and my lateness allowed me to sit on the side sitting sideways facing the pews.
It was so cool and peaceful. I felt utterly relaxed.
I really listened to the readings and as I listened, I meditated and prayed.
I felt more connected and heard more than I usually do.
You see? Harmony prevailed.

I spent the rest of the day buying vitamins at GNC and Whole foods.
Later I tried a Chi Gong DVD and tried to do 10 minutes of vocal work.

I think I feel better.

I biked to the AVIS near me to see if they had a car that would fit my bike. I was sitting on it as I spoke to the guy in the Avis lot so he could clearly see what I needed.
He was so nice! ( so nice that I wonder if I reek of sadness) He took the time to show me what might work, pulling down front seats, opening up the hatch backs. I zoomed away happy.

I love New York City but I crave nature. I need an escape. I want to be sitting under an enormous maple tree, reading biographies, sipping wine, painting rocks.

The whole "Patients like Me" website is kind of a shock to my system, but as I hunt and gather on my electric bike, as I practice pysical and vocal exercises, as I pray and come in touch with an infinite universe created by a loving G-d (this creator, this source has to be loving because love (I would argue) is the basis of our existence, as I review all this, and access this hope I've always held for life, my creative life, my career, my connections to others, I feel like I'll be okay. I am trained in creative hope.

Sometimes I'm filled with rage, sometimes confusion, but not despair. I am made of faith and hope.

SPRAYER

Susan had me over for dinner in her backyard garden on West 95th and Central Park West.

When I got there, she was wrestling with a fountain pump that she bought on Amazon for $50.
She said she bough it because it was German-made.

There was a hole by her backdoor lined with plastic bags and a bunch of nozzles, each nozzle creating a different look, a different spray. After testing different ones, she chose the kind they use for a champagne or punch bowl (a pretty and steady flow, but low. This nozzle was called "Water Bell".

It reminded me of a bidet.

I brought tinned oysters and crackers (so good they must be deadly).
We drank bad red wine (like cooking wine!) and had delicious corn on the cob (cooked on the grill) with chicken.

Like an elderly person, I had to leave by nine.

A few years ago, Susan and I drank so MUCH wine that when she woke up, there was wine on the walls.
We now refer to drinking wine as spraying.

As in, "come on over, got the wine sprayer ready."
_______________________________________________

Josh (charlie)

It was so fun to see you and ride your bike!
Hope you were in bed at a reasonable hour...
Talk to you soon,

Sue


________________________________


Marabec!

Thanks for the vinegary wine.

Reading this in the times today...

http://www.nytimes.com/2009/08/16/fashion/16drunk.html?_r=1&ref=style

Thank you for my outside time.
I love coming to your place.

I wish I could have gotten sauced and splashed more.
But of course, I am unsure of my driving abilities.
Every day, there might be something missing.
(Where did that go?)

I, however, glided home like G-d's favorite.

Straight down West End, and then 11th, all green lights along the way.
i think I was home in ten minutes, sober and ready for my old man tub.

Love your outdoor bidet.
It needs to be on the hill in the back (for more privacy- behind a bush)

I'll be over for a wash.

-CROBERTS

GOOD ADVICE

I see Dr. Wang again this afternoon who tells me that the mind is the most important thing.
He tells me that I must not spend my days chasing after answers, running in a dozen different directions.
I must make a choice, the best choice for me, and stick with that choice.

I get an email from Lee from the "Patients Like Me" website.

I will tell you what has worked for me, does not mean it work for everyone, i do tai chi 3 times a week, peddle for a few minutes, walk around the block every nite rain or shine, take lots of vitamins, say my prayers, CoQ10 is very good for patients with ALS it is a vitamin, do not overdo yourself, never give up, and do not listen to the doctors when they say you only have a couple years, because there are people out there who have had it 10, 20, 30, years. Let me know if you need anything else.

Lee,

I email him back that I love him for sending me that email.

a cup of coffee in the morning

Last night my movie star friend Peggy

(http://www.youtube.com/watch?v=3SETH203X-A)

came over and stayed the night.

She' s in the city visiting a friend from our old acting class, Anita, who is in a hospital in the Bronx with lung cancer.

Peggy enters my apartment carrying a jar of wild flowers from her yard in the Catskills.

"There for Anita"

"Well put them on the coffee table, there mine for tonight"

I open up some brie.
The brie smells like old baby diapers.
Peggy insists that it's Camembert and that's the way it's supposed to smell.

I sit at my permanent corner of the sofa, Peggy sits in one of the small club chairs.

We talk about her life. A friend has made inroads for a meeting with an agent for her. Peggy can't make the call.
She's having difficulty following up with her real estate career. She is at odds and ends.

I sit (deep in the cushions) and listen,
I don't say to this to her, but spoke with my sister today about the purpose of life.
It is so clear to me (now) that the the purpose of life is the enjoy yourself, enjoy who you are, to be happy.
What your circumstances are, what you do, is just something that guides you through your happiness.
I mean, I love a cup of coffee in the morning, Maybe that's enough.

But I DO bring up with Peggy (guru like in my manner) the power of intention.
Make it your intention to put off this agent meeting, make it that, that is what you have decided. You are in power.
Don't let it mess with you.

Intention has come up a lot in healing and religion.

"For instance," I tell Peggy, " food and vitamins, drugs for that matter, can't heal you unless you make the mindful decision, the clear intention, that they will and can heal you."

"I know, I know, I know I'm in power, i just feel sort of (all off) right now."

We talk about her her brother.
They're at war over who (has the right) to their mother's (fancy dining room set).
Her mother left it to her brother but he didn't want it so Peggy took it and has had used it for the last few years.
Now her brother wants it back. Peggy says it's hers now. He's irate.

"hmm..." I offer ambiguously.

"it's not about the furniture, it's about my brother, if he'd at least sit down and talk to me about it."

We talk about MY family.

I talk about my mother, who, this afternoon, became crazed and used offensive language with my father's nurses at the hospital in Cape Cod.

My mother ...

(this is like a bad film gimmick in a movie- you'd think this would never happen - a ridiculous plot device)

My mother called me on her cell phone, forgot she was calling me, began a long and terrible altercation with theses nurses, and the whole argument was left for me as a recording on my i-phone.

I was kind of appalled.

I called my sister.
She suggested I call the nurse and apologize for my mother's language (not her sentiment) just the language, on behalf of my family.

So I did.

The nurse said it was very kind of me to call, and that they are aware that my mother is very angry with them, that they are trying to take care of my father AND my mother.

I felt duplicitous going behind my mother's back, but her choice of words was so shocking. I had to do something.

After discussing all of that with Peggy, I go for a swim in my building.

When I come back,

Peggy sleeps on the convertible sofa in the living room and I go to my own bed (that i have wheeled into a diagonal position in my bedroom) and fall to an intense night of sleep.

In the morning Peggy brings me coffee in bed.

(She's so funny, so oddly decadent. She brings the coffee Urn, the carton of milk and the coffee cup to my bed. She spills a little milk on the floor. It doesn't bother me. She leaves the carton of milk on a stack of papers on my desk.)

She gets a call on her cellphone. While she is on the phone, I ask her to get my camera. I take pictures of her, while I lie in bed with my coffee, as she paces with her cell phone at the end of my bed.

After her call,

we talk about this concept (this concept that is out there in all religions and philosophies) this concept of the need for the dark side. If you feel uncomfortable with an idea or a person, often this is the very thing that is important to us, something we need to be ourselves. Something we need to examine.

"To grow!" I suggest.

"Not even to grow" says Peggy, "to just be who we are."

(I guess I'm thinking of this pamphlet on buddhism I read the other morning.
Things that bother us are clues to (who we are) and (where we might change).
Difficult things are needed in life, to guide us.

We talk about this blog. She wants to read it.

I tell her ...

"I'm ambivalent about people reading it. Like my actor side, I enjoy performing for a large anonymous audience, but when I perform/ write for a few people that I am aware of, I clam up. Plus it's a downer. Julie Powell blogged about cooking. I mean this, this stuff I write about isn't so uplifting. It's more of a car wreck, you can't help but stare."

Peggy (always argumentative, always counter-pointing) says that

"the car wreck thing is all in your head.
People like feeling connected, like feeling connected to you, that's all it is."

And she instructs,

"that maybe your blog shouldn't be so focused on the "issue". It could be a daily blog of whatever. Even it out.
I'm not saying you should avoid it, but it doesn't have to be all about that alone.

"Hmm... makes me think of Christopher Isherwood."

"Yes, a writer's journal."

"I have one of his journals on my shelves."

Peggy wanders over to the bookcase and ogles the binding.

"You know I met him and his boyfriend Don Bacardi in LA.
Don drew sketches of me.
When they picked me up to take me to their studio, Christopher Isherwood lay down on the back seat."

"That's weird."

"Yeah, because, apparently Isherwood couldn't stand how Don drove a car (who was like 30 years younger) so Isherwood's therapist suggested that he just lie down in the back of the car. End of problem."

"What was Isherwood like?"

"I only met them that once."

"Oh."

After more coffee,
Peggy is ready to leave.

"Do you have you wallet, your keys, your cellphone?"

"Yes."

I go back to the paper as she gathers things.

"Can you uh, can you call me with your cellphone?"

I call her and in a few moments her cellphone is located.

"Okay kiddo, great to see you."

I sit in a chair as she leans over wearing her newly ironed shirt, holding the jar of flowers for Anita, her bag and her keys in hand, and we peck a kiss goodbye and she leaves.

A few moments later, there is a knock on my door.
I ascend from my chair and Herman Monster walk to the front door.

Peggy glides back in and grabs her travel mug of coffee from the counter.

"So sorry about that"

"no problem"

"bye."

* Months later I rent the movie "Chris and Don" and  I see Peggy's portrait hanging on  a wall near the end of the documentary.

energy

I go to the movies.
I zoom up to the Chelsea Cinema from the West Village on my new electronic bike.
I spend a lazy Sunday afternoon in anticipation of the movie.

I lock my new bike up right in front of the theatre on 23rd Street.
I am wary to leave it behind. It seems so risky. But this is the new Manhattan.
The safe suburban Manhattan. I join in the faith with the rest of the New York City mall population and just lock it up,
shiny, new, and expensive, and disappear into the Cineplex.

But I worry.

And as I worry, I stagger, I do my palsy walk to the ticket machine.
I buy a small pop corn and small diet coke.
I ask the woman behind the counter (like a crazy person... I am too familiar,
I ask the pop corn attendant if my bike will be safe locked up outside. (Like she would know?)
The young woman is poite and takes pity on me. (Did she see me stumble up to the counter?)

"I think it will be okay, every day I come to work, there are lots of bikes locked up out there and no one steals them."

"Really? I reply, (like this is news, like her answer is so interesting I might just stick around and ask a few more questions.

Which night is the most popular night for the movies?

Do you eat pop corn every day?

Do you see all the movies that come through?

Did you know that I used to work at a movie theatre?

Questions like that.

(Once I land, I am reluctant to move to the next place. This brings out my crazy weird (too familiar) personality)

The woman taking tickets asks me if I need help (or) How am I doing tonight.
Does she also notice my handicapped walk?

My walk brings outs a sort of meekness in me. I have this expression of "don't worry about me!
All is well with me! You go ahead of me, I'm not getting anywhere too fast! HA HA. Doop dee doop dee doo!

I put down my popcorn and coke and stumble back to the entrance to check on my bike.
Still there. Another bike joined mine at the bus stop pole. That's a good sign.

If my bike is stolen, I'll to buy a new one. Tomorrow. (I tell myself)

My theatre in on the third floor.
I take the escalator.

On the third floor, my theatre is far away. It is miles away (for me).
I stumble, I sweat, I am determined, my brow furrowed, my eyes angry.

The theatre is full.
Plenty seats down front, but nothing center or in the back.

There is one empty right near me, second in from the aisle. The last row. This would be perfect.

"Excuse me, is this seat taken?"

The nice looking dude on the aisle looks over to the next people down the row.

"um... yeah, I think it's taken. Some one's sitting here right? -

"Yeah, some one's sitting there, she's in the bathroom."

- "oh. Okay. Thanks."

Sh*t. F*ck.

I have to walk down the long slope of the aisle, to the front of the movie theatre without a rail, holding popcorn and a diet coke in each hand.

(My mind flashes to how I felt about this situation before this terrible disease. I was bold about walking in front of the New York movie crowd. I relished it. A little bit of my essence, my vulnerable soul, being exposed to an audience for a six count.
It's like flashing or streaking!

Now (however) I imagine an episode where I will fall, I coming crashing down, a small crowd gathers. I will be lifted up by two men. I'll explain,

"I have this weakness, I'm so sorry. I'm fine. Sorry about the popcorn. No, I'm alright. Thank you so much, NO, I'm fine!"

So I stare down the aisle and concentrate. If one person brushes against me, it's over.
I will topple over.

I sweat with concentration.

My walk is pathetic, awkward, jumbled. I stare only at my feet. Delliberate, broken, odd.

I make it. I fall into my seat.
My pants are falling down. I have lost so much mass in my lower body that none of my pants fit.

I hike up my pants, plant my soda in the appropriate receptacle and chew down my popcorn. I did it. I got here.

(I eat mindlessly)

The movie is a great little escape. The Chelsea audience is eating it up.
Sometimes I'm uncomfortable because I am reminded of my vulnerable bike outside.

At the end of the movie. I make my way to the escalator. The down side isn't working. I stand there and stare down the three flights of stairs. The crowd passes me as I lean on the railing. I catch snippets of conversations. I stare at groupings of people. I am often alone. Staring at other subsets of people.

People are annoyed that the escalator doesn't work. This surprises me. I never took the escalator. I enjoyed climbing stairs and working my gluts.

But now I see that even for a perfectly healthy person, one needs to save energy.
By saving energy walking down three flights of stairs, one might have more energy to read a book later or put away the dishes.

I take the elevator down with a man with a cane.

Outside, my bike is waiting for me (this is the new New York). I turn the key and motor home.

* I forgot to add the movie I saw was Julie & Julia. My co-actor Miss Piper was in it, as was an old friend's brother, Steve.
Also, I used to do spots with Stanley Tucci for AT&T. He does the announce. I did goofy characters. Once, however, I replaced him on the announce.

All of this is to say, I matter, I am important.

Okay? People?

SEPTEMBER

I spend the day cleaning, doing laundry, and putting away groceries.
Siska (my cleaning partner) arrives at 5 to assist. She vacuums, cleans the floors, the tub.
She cleans the glass on my pictures, like a real cleaning professional.

She rearranges things in my kitchen cabinets.
She puts things back for me.
She picks things off the floor for me.

By 8 o'clock, my apartment is so clean and tidy, it's a joy.

After a dip in the pool (my apartment building has a swimming pool on the third floor)

Perched at my kitchen counter, I steam mussels and watch old TV shows on my laptop.
I spill hot butter on the newly washed floor.
The hot butter will have to wait to be cleaned up until Siska's next visit.

Later I watch a dvd of TO BE OR NOT TO BE.
Mel Brooks, Ann Bancroft.
So refreshing, so funny, I catch a reflection of myself on my laptop, grinning.

I love the film quality and the art direction, seem so wonderfully dated (it was only 1983).
There is a purity and simplicity to his work.
I admire Mel Brooks for his unstoppable vision.

After the movie, I sleep well.

But in the morning my hips and legs throb. They don't work as well as they did yesterday.
I was on my feet too much. When I work my legs too much, I actually cause them damage.

It seems like a big jump from one day to the next. Noticeable.

(Oh. So this is how it goes)

I shower and instead of dressing I fall back into my couch.

I can't get off the couch.
I stare at my laptop.
I read email.

I contacted someone on Craig's List (late last night) about an apartment swap.
Paris for New York, one week in September.
He responds with photos and possible dates.

(I wonder if I'll be able to walk in September)

I will.