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.