I AM YOU

I call Phoebe.

Restaurant week begins Monday. We have reservations at Tocqueville.

http://www.tocquevillerestaurant.com/

Phoebe seems "off" on the phone. I wonder if this dinner is a "poor me" dinner/obligation.

Phoebe explains that they've been slow getting back to me because Adam's dog died.

We'll talk on Monday.

I spend the afternoon with Siska (my old cleaning person) going through paperwork. I'm not dressed. I sit in my boxers and a stained sweater. I haven't washed or combed my hair. I order Siska about.

"Put this with the medicare file, put that with the screen actors guild file, put all these in a pile of doctors who seem to be suing me"

I lose my patience with Siska. When I ask to put a broken watch away in a dresser drawer and she puts in it the secretary, I sit helpless, steaming. I am intolerant of poor listeners even though I'm one myself. I find it maddening I can't stand up and put everything away in a mad rush. I must remain patient. The smallest request requires description and language.

After Siska leaves there is still time to pick up my bike from the repair shop on the upper east side.

I don't want to go. It's getting more and more precarious for me. Just walking around is a big, embarrassing, hassle. It's getting worse; my lower back, my mid-back, my hips.

I have changed. The color of my person has changed. I am not the same color. When I'm out, I resent the attention my gait, my canes, brings. My voice- a nice little finishing effect for unmitigated pity . The hassle. The frustration. A part of myself has disappeared. The public part of myself has disappeared.

I call Mattie to ask her if she thinks it's wise for me to go to the bike store alone.

I go to the Patients Like Me website.

Another PAL (person with ALS) is "with the angels", I read.

This prompts me to pull some pants on and go get my bike.

What's the worse that could happen? I could hurt myself?

I should preserve myself for all the good healthy times ahead?

When I get to the NYCE Wheels, Mark, the guy I deal with there, is alone. It's dark and cold outside but inside the store shimmers with optimism- so many glamourous, gorgeously crafted bicycles. Some of them fold down small enough to be put in the overhead of a train or plane.

I want to own one of these magically folding bikes. I want to fly to a cool city, unfold my stylish bike, and then ride it to my hotel. For this to happen, I will need a cure for my rare disease or my rare disease will have to come to an end.

But my brain, my wants, my outlook, doesn't function... like it used to. I simply don' t think too hard about these things. I let them float by (these images of unfulfilled hopes, unrealized scenarios) I let them glide by with out one, not one catching, snagging onto my working mind.

I only think about the next fifteen minutes. (Did I bring my gloves? Can I walk the bike to the street? Does Mark have any other disabled customers? I'm a little hungry. Have a swig of water).

The ride home is precarious.

I get stuck and fall against a car at Park and 86th. There is a comely couple getting into the car I am pinned against. They see my canes poorly tied to the back of my bike. I am in a position where I can't move. I will have to get off the bike. Getting off the bike will require a lot huffing and puffing. I will have to lean hard against the car and then use my arm to lift each leg out from the bike. It will take patience and skill. And then, once I am done, I will have to walk the bike for some distance until I can mount it again. This is becoming more and more difficult. The danger of being disabled and riding around in this city is becoming clearer. I feel foolish to be on a bike.

The woman of the comely couple asks in a focused, measured, adult, searching, overly polite voice,

"Sir, do you need some assistance?"

"No" I say, but I say it my muffled voice, my tired, unclear, unfocused voice, "no, I don't need assistance."

"Sir" she says again, ignoring my mumblings - maybe she thinks I'm drunk or mentally disabled - "Do you need some assistance?"

The young man walks around to my side of the car with concern and responsibility.

"Can I hold the bike for you sir?"

His measured politeness is insulting.

How do you explain to the frightened pretty couple that I am you. I am you but I have ALS. I have ALS so I use an electric bike. The bike has been broken for a month so I haven't ridden it and each day that I haven't ridden it I have progressed. My legs and feet and lower back have grown weaker. I'm just now trying to figure out if I can ride the bike. You would do this too.

I just got the bike back from the repair shop and I'm having a little trouble staying on the bike. I am you but I have ALS.

But instead I say, "No, I'm fine. I'll be fine. Give me a minute."

They stare, balancing in their polite constraint with the worry I might put a fist through their windshield.

I get away and walk the bike across Park and remount it (with some effort) on the other side.

I ride home through a dark Central Park. The glowing skyscrapers hovering over my ride - always a pleasure - always reminding me to be grateful, thankful to be living in this gorgeous city. And to be grateful that I am blessed to be the kind of person who prefers to bike home on a cold January night, even with ALS.

afternoon apartment

afternoon new york
Originally uploaded by Charlie Roberts

AROO

AROO
Originally uploaded by Charlie Roberts

Curtis

Hey,

I felt energetic swimming tonight!

I feel good tonight! Connected to my legs. My breathing deeper. My head calmer.

Last night, I went to church. Susan came along. I think she was glad to go but a bit suspicious. The testimony was cool but a little scary, she said.

After church, we walked around the corner to the Broome Street Bar.

Broom Street Bar

It was nice to be out... watching people unwinding from work, grind dancing to 80's music.

I spent the afternoon at the Cupcake. I ran into a friend, Curtis (a painter, a wealthy artist). Curtis also likes to spend his free time at the Cup Cake. His studio used to be nearby but he recently moved to the far regions of Brooklyn.

We spoke of a project he's been developing for years.

Cutis's Project

I never got up from my seat. My canes were tucked away. Curtis never discovered my disease of the week.
That was a pretty neat trick.

-Charlie

PENSION

I'm sitting in the Cup Cake writing my blog when my cellphone rings.

It's SAG Pension calling. There are more forms for me to fill out.

I (reflexively) try to make my voice sound more pathetic, closer to death, in case they're not buying this whole fatal disease thing.

(ridiculous)

SEX AND DIRTY LAUNDRY

I meet Phoebe at the Paris Movie House on West 58th to see "A Single Man".

I know the Paris well because years ago I did extra work for a movie called "The Pickle".

"The Pickle" was directed by Paul Mazursky and is noted for being one of the worst grossing movies of all time.

I spent one week alternately playing a bellboy at the Plaza and an alien (yes, from outer space) - you'd have to see the movie.

When I walked around the Plaza in my bellboy costume, people staying in the hotel would try to flag me down and I would ignore them. This delighted me.

When I played the alien, I wore tights and a bathing cap. I remember it was freezing and they used smoke machines. They made a little space craft and trailed it in front of the Plaza. (You know who was also an alien in tights and a bathing cap? That guy from the Daily show, Aasif Mandvi. We were aliens together. I still have his phone number).

Anyway, the holding area for "The Pickle" was in the Paris Movie Theatre.

I get to the Paris first and Phoebe and I text each other.

______________

- Still in transit. If u get there first don't hesitate to go in and grab seats & i'll meet u inside

- Okay. I'm going in. C U in there ;-).

- Do u want drink or food? My treat. I need a snack.

- Pop corn!

- I downstairs. Food?

- Yes.

- Middle.

- Back.

- Audience right.

- no butter?

- K!

- No butter good 4 me.

__________________

Phoebe arrives looking healthy and shiny and (in love). Maybe.

She's wearing a new, tailored, winter, wool coat.

(The new coat! - like the new haircut or the winter tan -always a crowd pleaser).

*Note to Charlie - splurge on a new winter coat! Look good- feel good.

"I like that coat" I say.

"You do? Good. Because I bought five of them over Christmas... three in New York and two in Michigan. I still have to return two of them. You have no idea how stressful the whole thing was. It's really my mother's fault. She's always had this thing about making sure you have the right winter coat. So I got a little out of control. I mean, it's kind of reasonable. You only buy a winter coat every couple of years so it has to be good. Do you really like it? Adam (Phoebe's boy friend) is going to kill me. He thinks the whole coat situation is nuts. He won't even let me mention the coat. We don't talk about the coat."

(I'm with Adam on this. This really must be a crazy girl thing. Still, the craziness paid off. Phoebe looks rich and tailored and radiant).

The movie starts. We eat our popcorn.

"A Single Man" is lush and gorgeously designed. I pined for the table lamps, bow ties, and vintage cars. I'm not sure the director, Tom Ford, fairly represented the book. But Collin Ferguson is compelling. The art direction alone is worth it.

The movie ends and I grab my canes.

"When did you get these canes?" Phoebe hasn't seen me stand up yet. I got here first. As a matter of fact,

I haven't seen her in months. The last time I saw Phoebe I didn't have any canes. I feel caught.

Being able to walk with you fellow human is an unspoken entitlement, a privilege no longer granted to me.

I remember helping my friend Janet when she was sick with cancer. One day I brought her to her hair cutting appointment. She was too weak to walk down the street or get a cab by herself so I raced around and did it for her. I was an eager monkey. I was everywhere. Look at me walk and run and crawl around and grab the cab! I'll help you! Look at me!

I notice people get more of a spring in their step as they assist me through a door or into a cab. Sometimes it's too much. Overly solicitous. I grimace a pale "thank you" but I want to incur "bug off".

Phoebe and I decide to get a drink at the Time Warner Center.

We grab a cab for the short distance to Columbus Circle.

When we get there, I can't (step up) to the sidewalk. It takes effort. This is embarrassing.

This is unexplainable. We don't talk about it. What is there to say?

I cane my way though the grand lobby to an elevator. We ride with two gay men in mid fight, a catty fight. They are performing for Phoebe and me (I think). Maybe my plain convalescent, my canes, induces a release of bitchy camp. I enjoy it.

We go to an animated interactive wine bar called CLO on the fourth floor. I've been here before. It's fun. There are hundreds of wines to choose from.

I pick a red, a 2007 Domin L2 Touriga Nacicnol Blend from Dover-Portgol.

"Bold and Beautiful. Deep and dark with chunky fruit, sweet vanilla, a mouthful. You can tell this wine was crafted by someone who grew up on the purple wines of Port."

I really like it. The glass was only $7. When I later googled it - it came up in an article "Great wines for under $20".

Adam (Phoebe's partner) joins us at CLO. Adam is a major foodie and wine lover. For Christmas, Adam got a gift certificate to Per Se. This kills me.

I think Adam said his favorite wines were in the Grenache family from Italy or France.

He told me he liked his wine "to stink of sex and dirty laundry".

I like that.