IVORY (Part 8)

After the Pad Thai, my mother and I cab to the Paris Theater (near the Plaza) to see the latest Merchant Ivory movie (sans Merchant), "The City of Your Final Destination". We choose the movie because it's at the Paris. It's easy for me to get into the theater.

This movie barely raises a pulse.  We enjoy it however, because it follows my mother's dictum; the movie doesn't have to be good as long as the scenery is exotic. This movie takes place on in old-world mansion in Uruguay. The movie doubles as a travelogue!

After we find our seats, I watch a woman (my mothers age with blown out blond hair and a panicky way of fussing at her shirt collar) greet another woman (inscrutable from plastic surgery).

The blond woman tells the plastic surgery woman that she just had drinks at the Plaza.

"I had to see the Palm Court. I'm dating myself here, but my uncle used to own the Plaza. It's all changed, of course, with this new developer. But they're bringing the ferns back next week, so that's something, I guess. Change. I don't like it. But of course in New York, EVERYTHING has changed. And you know what, that's fine, that's good. You have to let it go. Change is fine."

The blond woman comforts me (somehow). If she can relinquish a world where her uncle owned the Plaza, I can let go of the dark, dirty city I've known.

PAD THAI (part 7)

I hand my mother a recipe for Pad Thai from the New York Times' food section.

The recipe calls for special ingredients, different from your average Pad Thai.
Seasonings and oils will have to be gathered at the Food Emporium down the street.

I decide this will be a fun project for my mother and my mother happily takes it on. When she leaves for the the grocery store however, she doesn't take the recipe.  My mother (an independent contrarian) isn't going to take directions from the The Times.

__________________

Later that evening we have mom's Pad Thai. 

My mother worked hard on it.

When she asks me how it is (I know she flouted the recipe - she made it with olive oil instead of peanut) I can't bring myself to be enthusiastic.

I measure, "Well... it's okay. It doesn't taste like Pad Thai though."

"Really, because I've made it a million times for your father."

"Yeah, but you didn't follow the recipe. That was the whole point! The fun was in trying out this specific recipe. It doesn't taste like Pad Thai."

"How do you know?" she asks. "Have you ever been to Thailand? I have."

"Mother, I've ordered out for Pad Thai, at least one a month since I've lived in New York and this simply doesn't taste like Pad Thai!"

My mother hides her hurt in her drink.

"Well" she sighs, "I'll try again tomorrow."

I feel rotten. 

I make a mental note to apologize to my mother, but I never do.

-------------------------------------------------------------

RECIPE FOR PAD THAI

http://www.nytimes.com/2010/04/22/dining/21minirex.html?scp=1&sq=pad%20thai&st=cse

SMALL INVISIBLE (part 6)

JD comes over to set up my new stationary bike (the bike peddles for you - it's geared for people with MS and Parkinson's). 

Before he leaves, JD corners the cat in the living-room and forces one pill down the cat's throat (an antioxidant). The cat moans. When JD leaves, the cat makes himself small and invisible beneath the air conditioning unit. 

GADFLY (part 5)

The next morning my mother and I get up for coffee and the paper but the New York Times is missing.

"Who would take the G.D paper?" my mother asks, now resigned to her Kindle.

I grit my teeth. "It's Bruce, my neighbor across the hall."

"How do you know?"

"He's producing a Broadway play. There must be a review." (There was).

My neighbor Bruce often pinches my New York Times. He takes them on big news days (or) when there are articles about a show he's working on.

Bruce is a flamboyant, driven, gadfly; an ex-Broadway dancer, I think he did "CATS" for years. 

I admire Bruce, but he sets my teeth on edge.

For instance, he tells his friends when we pass in the hall that I do cartoon voices for Disney. He made this curious leap when I told him that I do voice-overs. I try to correct him but he just keeps talking over me. I can't get a word in.

(or)

I took pictures of the twin towers on 9/11 from the roof of our building. Bruce (who I didn't know at the time) is in many of the shots. Later, I tried to give him some of these photos. I knocked on his door and told him I had pictures of him he might be interested in.

He answered (through the door),

 "NOT the ones kicking around on the web!!"

Apparently there are graphic pictures of Bruce on the Internet. I tried to explain that no, these were different pictures, but Bruce (again) just talked over me. I never gave him the pictures.

(and)

Right after we moved into the building, Bruce would stop me in the hall and ask me if I was gay. This was invasive. I didn't know him at all.  I offered various answers but none of my answers stuck, including - yes, set me up. He'd ask me again,  every few months, completely forgetting our last conversation like he was suffering from the early stages of Alzheimer's.

(so)

I become the level-headed lunk when I'm around Bruce.

I don't mind when he takes my paper. I can read the paper on the Internet. It's his impetuous (can't wait -must have now - ebullience) that makes me retreat when I encounter him in the lobby or hallways. 

They sell the New York Times downstairs. Can't he wait five minutes?

Bruce's show http://www.mytripdownthepinkcarpet.com/

BURIED IN MY PSYCHE (Part 4)

But by evening we notice Aroo's decline.  He won't move. His eyes are filmy. His ears are yellow. 

(I'm reminded of the worst kind of hangover). We decide Mattie will have to come back and offer her opinion.

Mattie, a positivist, has made it part of her daily purpose to save Aroo.  (I'm skeptical). 

I know the cat has kitty leukemia. I've read (and been told) his life would be shortened. 

It bothers me to pay out thousands of dollars to a vet. (Mattie takes Aroo to a pricey veterinarian in West Chelsea. They're excellent but expensive). If Aroo doesn't improve, her next suggestion is an animal homeopath in New Jersey. The homeopath charges $400 for the initial visit, but then it's much cheaper after that, Mattie explains.

"We've already spent thousands! It's too expensive."

"I spent thousands" my mother chimes in.

Mattie looks flushed. I feel a stingy cold connection to my mother as we face off with pure hearted Mattie.  Mattie (an ardent animal advocate) has been vigilant about Aroo's recovery (and my own for that matter). Money is no issue (to her). She spares no expense for the care of her own animals. Animals are one of her passions.

But I read articles (daily on the web) about snake oil being sold to vulnerable ALS patients. 

I read about vast amounts of money wasted on dubious treatments. People take advantage of dying people... (and emotional pet owners too).

If Aroo is dying, let him die in peace (I think). 

(Buried in my psyche, safely hidden from my rotting motor neurons - I'm making unconscious decisions about my own life.

At some point (I'm told) I won't be able to breath on my own. I will be asked if I want life support. This will take financial resources, and what will the quality of my life be?

"We'll watch the cat" I tell Mattie.  "No more pills. Let's leave him alone for a few days and see how he does."

Mohawk (part 3)

The next day, after the cat's check up, the vet tell us Aroo has improved. His ears are pink. His fur is shiny. His energy is back. We all relax.

My mother, working at a crossword, tells me the veterinarian had good hair.

"It's thick and shiny black. Very fashion forward. I think it's what you call a mohawk. He was VERY interesting looking. He might be Oriental."

(I gasp)

"Mo- ther! the term is Asian!"

But my mother, an unapologetic contrarian, won't be corrected.

"Aren't China and Japan part of the Orient? There's nothing wrong with the word Orient. What's wrong with the word Orient? I wish I was from the Orient. I wish I was Oriental."

Inveigle: to persuade someone to to do something by means of deception or flattery (part 2)

The cat WAS fine. When my mother arrived a week ago, the cat was okay.

When I got home from grocery shopping Friday night,

mom was all set up, sipping vodka, reading her kindle, the cat in her lap.

"Mom, Mattie is taking Aroo for his check up tomorrow. Do you want to go with her?"

"Should I?"

"Sure, it will be an adventure for you."

My mother is familiar with the cat's frailty. He was sick during her last visit but he seemed to rebound after a stint at the animal hospital. My mother had no problem paying the tab. She likes the cat.  When my mother sleeps over, the cat sleeps on her head. This won her over. (Aroo is equally curious and affectionate to every human he encounters. He's expert at winning friends and influencing people. The cat (in his small solicitous way) inveigled my mother to pay his exorbitant hospital bill).

SCHUMAN (part 1)

My mother has left after a week long visit.  It's Friday night. I sit on my tattered sofa sipping red wine and listen to Schuman on my laptop.

The apartment is mine again. I look around the room: my new bike painting, the plants - just watered, the cat.

I call out to the cat who sits comatose in a nearby fold out recliner.

"Aroo -oo!"

The cat offers a sodden leer. He's not moving. He can barely blink. (I give up on the cat).

I consider leaving the sofa for the kitchen.  It's time to eat. But my arms ache and my lower back hurts (it's wasting).  My walk will be a drunken spasm to the kitchen (tragic and film noir-ish) - (wine or no wine).
I stay put and focus on Schuman. I faintly smile and swill my wine. I note the absurdity - the theatrical drama of this scene. The cat and I (longtime roommates) are doomed.

BRYANT PARK

PEDICAB 42ND STREET

CAB TO SOHO

LUNCH UPTOWN

PSA

Blue- 

I've been reading the "ALS- Something Different" thread.

Good Lord! I am SO not integrated with the community. 

I am clueless! I'll need to spend most of my time reading and researching to be able to spar on PLM (articulately). I could do it. Selfishly, I have this fear that entrenching myself will make me worse. (This is probably wrong).

______________

DC.

I was thinking of bringing a video camera and shooting a mini doc. This would take a lot of focus and time. But I could do it. I guess I'd have to come up with a list of five questions to ask each person I met. That's a pretty simple approach to a documentary. 

_______________

This weekend I'm going to a recording studio. Before DX, I was working on a cabaret. I have a good voice. I'd been developing it for a few years; getting music transposed, working with a coach - and then BOOM! ALS. My voice is disappearing. I DO have a recording of my last coaching session on tape. It's a bit rough. But I'm going to digitalize it and try to tweak it to make it sound better. It's the only record I have of my efforts.

_______________

I have this scary idea for an ALS PSA. 

We hear the announce,

"This is Charlie's voice two years ago".

 (play snippet)

 - then -

 "This is Charlie's voice after two years of ALS". 

(the same song only with me singing it in my present condition).

It could be frightening. (Maybe).

I could use simple graphics and let it go viral on the web. 

If I did it, who would get mad at me? ALSA?

-Charlie

COMMON SENSE (from John) - To the ALS Association

Ms. Jane Gilbert,

I am writing to you as a 48 year old former airline pilot and victim of ALS, now in my fourth year. The purpose of this communication is to convey my terrible disappointment with the performance of the ALS Association at the national level. In my view, ALSA national is not putting the best interest of the patient community first.

The game of baseball provides an excellent visual model of the awareness, advocacy, and research dynamics. Awareness is first base, advocacy is second base, research is third base, and a TRULY effective treatment resides on home base.

Sadly, although the game has been playing for decades, the patient community has yet to reach first base. We have no unified national voice and no public awareness program. ALSA seems content to send e-mails to the patient community encouraging the purchase of cheap Chinese bracelets and have this serve as a national awareness program, which it clearly is not. The bedrock of an effective national awareness program is a series of public service announcements airing consistently on national networks. Anything less is a waste of time and resources.

Here is what I can see during a typical day of television viewing. See if you can discover a pattern. Quite often on ABC at 6:45pm, I see an excellent PSA from the Alzheimer's Association, nothing from ALSA. I see KFC commercials for the "pink bucket" of chicken to support breast cancer initiatives, nothing from ALSA. I see PSAs for the breast cancer walk in DC on May 9th, nothing from ALSA. I see the PSA for the MS walk,nothing from ALSA. I see a PSA for the Epilepsy walk, nothing from ALSA. Earlier this year I saw yogurt commercials highlighting the "pink cap" for breast cancer, nothing from ALSA. Do you see the clear pattern that quickly emerges, Ms. Gilbert? Is this disservice to the patient community something to be proud of? ALS continues to be one of the best kept secrets in America because our national organization stubbornly refuses to initiate a consistent program of FREE public service announcements. Can you explain why ALSA refuses to place PSAs on national television?

ALS Canada sets a fine example with their public awareness program, that includes an excellent PSA depicting all the phases of ALS in just a few seconds. After their PSA aired for a while, ALS Canada was pleased to notice a large increase in revenue. The PSA system is proven to increase awareness and donations, but it will not work if ALSA refuses to use it at the national level.

Considering the bleak prognosis of the patient group, we need the loudest, most radical national organization to push progressive change. Anything less is a disservice to the ALS community.

Because there is no national awareness program, and we haven't reached first base, advocacy is suffering on second base. An effective advocacy program depends upon an effective public awareness program. The public must know the details of ALS in order to support our cause. Likewise for those who control the federal research funds. A new phrase has been circulating on ALS blogs and forums. Anemic Advocacy. The sole use of this new phrase is to describe the advocacy of ALSA at the national level.

Last year, we went to the Hill with tin cans to beg for only 5 million dollars from the DOD. This year we are asked to again approach the Hill for only 15 million dollars. While other patient groups demand adequate funding, we are encouraged to move in and sweep up the crumbs. Do you realize that even in 2001, HIV research was supported by 4 billion federal dollars? This year, the Alzheimer's Association is demanding 2 billion dollars. ALSA acknowledges that 95% of ALS research projects will go unfunded. This would not be the case if ALSA demanded real money instead of pocket change. This year, I will spend my time at the Missing Parts display. I will not carry the can to beg for table scraps. I will however, be willing to climb the Hill to demand not less than 250 million dollars in federal research funding.

Swift access to investigational new drugs was a listed legislative priority in 2005 and 2006. Now that important priority is gone, and we still cannot access new drugs. When I asked ALSA for help with obtaining Iplex last summer, there was no interest. Why?

I realize that ALSA may not be able to correct the many deficiencies in the research community, so I'll not dwell long on the third base of the model. Increased funding will help, as will increased communication between all research efforts. A major victory would be achieved if the conventional clinical trial structure were overhauled to reflect the reality of a fast moving condition such as ALS. The process must be simplified and streamlined. When patients don't live long enough to complete a trial, something is wrong.

Just a few more concerns left. I know that a letter was sent to ALSA national some weeks ago asking that all organizations involved in the fight against ALS be welcomed to present at Advocacy Days. The request was denied. As a result, other fine organizations are forced to use the lobby or other hotels. Why is ALSA national so hostile to other organizations that just want to help? We need a unified effort, not political turf wars.

What is the issue with signs this year? Last year, my daughter and I carried signs to increase ALS awareness and inform the public of our plight. The signs were very effective and well received at the conference, among the public, and on the Hill. Without signs, you can only bring the message to people next to you, if you still have a voice. You may know that many ALS patients lose their voice, therefor signs are the only means of personal expression and communication. With a sign, I can reach every person within 50' of my chair. I don't appreciate being lied to. ALSA seeks to prohibit free speech citing existing regulations prohibiting signs on the hotel property. Quick communication with the JW Marriott reveals that there is no regulation against signs. The element of trust has been damaged. I will once again bring my signs to communicate with the people. I do not wish to cause a disruption and I ask that ALSA not instigate a confrontation by attempting to take my voice away.

I notice that the schedule is open on Sunday until 2 pm. Why are our veterans not being honored with a wreath this year?

This is a public letter published on ALS forums. I challenge you to take the stage on Monday morning. Many within the ALS patient community will be interested in what you have to say.

Regards,

John Roberts