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

MONDAY

DAVID

I sit on the bench in the men's changing room and dress.

(Dressing takes patience).

My toes curl under when I shove them in my shoes. (This is new). I adjust the tongue so I can slip the shoe on without my toes bending under.  I can get my feet through my pant legs but then it's difficult to stand, pull my pants up, and zip them closed. Once standing, I lean my forehead against a locker so I won't topple over.

As I dress, this guy walks over. I've seen this guy before. This guy has the body I always wanted to have. The same shape and size as mine, but his body is ideal, tough and muscular, like Brando in "Streetcar".

"I'm sorry, I don't want to bother you" he says.  "I hope you don't mind, but may I ask... what happened? Was it an accident? You look too young to have anything wrong with you."

I'm flattered (stupidly). The guy seems sincere.

"Accident. No. It wasn't an accident."

"I'm interested because my dad has terrible arthritis. Debilitating."

"No, it's not arthritis. My problems are neurological."

The guy is focused on me, unblinking. I stifle a blush.

"Is it MS? ...  or ALS? That would be highly unusual because ALS is so rare."

"Yep. ALS. That's it."

He accepts this without reaction. I go back to dressing.

I feel defeated. He got it out of me, now go away. But the dude stays with me. He gapes at me like I might dissapear in the wet steam rolling out from the sauna. He's here to learn; wisdom needs to be mined.

"May I ask, were you on a lot of medications before your first symptoms?" He ticks off a list of

obscure drugs. It's impressive. 

"Nope, I wasn't on any medications."

"Oh. That's unusual. I work up at Columbia Hospital. People have no concept of the toxins perpetrated by the medical world. Doctors are blind to the effects of toxins from drugs. They over-prescribe and make patients worse."

The guy is looming over me shirtless and forlorn. He's hot. I feel weird.

"Yeah you're right. Apparently all people with ALS have compromised immune systems, some say due to toxins. I've tried to reduce environmental toxins. I eat organic. Take a lot of anti-oxidants.

I drink clean water, I guess."

"But even swimming in the pool, the chlorine!"

"I know. It's something I've thought about, the chlorine, but swimming is helpful. A little exercise can really help your body heal."

The shirtless guy knows more about the dangers of toxins than I do. Maybe he's writing a paper. Maybe he's trying to avoid debilitating arthritis. I feel like I'm coming short on answers. The guy is in perfect shape and I'm ancient and sexless in comparison. I'm compelled to tell him I wasn't always like this. I wasn't always so fragile and stooped.

"I mean, NOW I've come to understand that too much exercise is a bad thing.  Just two years ago, I would bike to Central Park, play tennis for two hours, bike home, grab dinner, and then go for a run along the river. This is all new."

The shirtless guy nods, unblinking. He hasn't moved.

"Oxydative stress. It can be lethal. Every time I work out, I ALWAYS take anti-oxidants."

I go on. I have too. He's staring at me. I need to offer something.

"But I think for me, it wasn't medicine or over-exercise that caused my ALS to start, the on - off switch. I think it was stress. I do. I think I just wasn't paying attention.

"Did you work on Wall Street?"

"No, I was an actor. I did voice overs for a living. You get caught up.  Stuck."

"People base their whole lives on their careers and money. New Yorkers are the worst. They over party and over work themselves to death. They have no idea."

"I had no idea."

"Some people get it sooner than others."

"I didn't get it"

 "I'm David, by the way."

"Charlie."

He holds out his hand. Strong grip. He's wearing a choker. I wonder about him.  He looks worried.

"You know Charlie, even if you told people what you've learned they wouldn't pay attention. People think it could never happen to them, illness only happens to the other guy."

"That's what I thought."

We talk for a half hour, exploring the danger of toxins, the price of stress.

"Well, I'm sure I'll see you down here again. It was cool talking to you Charlie."

"You too David."

And David walks into the steam.

I go back to my shoes, mashing the tongue of my shoe back, guiding my foot into the yawning shoe with both hands. (Why did I tell him my diagnosis? Now I feel worse.  Caught. Cheap. I'm not up on my disease, on my life philosophy. My guru wisdom pales to what is expected.

(I'll have moments when I clearly see what's important,

and in a rush I'll think, thank G-d! I get it!

and then just as quickly, regret follows relief. Too late.

And then I think about the things I did right.

I count them).

I realize I've been gone for hours.

My mother waits at the entrance to the gym.  She's taken the elevator down from the ninth floor to the third and is patiently waiting by the glass entrance. 

(I'm ten years old and I've stayed too long at the neighbor's).

"Dinner is ready, honey!" she says. "It's nine o'clock!"

But she's wrong. "No Mother, it's ten o'clock. I've been gone over three hours."

"Well, we've got to get home. It's time for dinner."

I tell her to go ahead. I'll meet her at home. The walk home, down two long hallways and an elevator ride, will take least twenty minutes to a half hour (for me).

On the walk home I think about David. 

SOHO

HAWKING

Stephen Hawking thinks that aliens might be smarter than us: “I suspect there could be life and intelligence out there in forms we can’t conceive. Just as a chimpanzee can’t understand quantum theory, it could be there are aspects of reality that are beyond the capacity of our brains.”

ALSA (ALS Association)

Charlie,

Good letter to john. the only plan of action is to radicalize alsa, which it needs desperately. the national leadership is a very establishment, passive organization from what I can see. if john could offer a list of "demands" it would be helpful. he could even bring to dc a petition that we sign electronically. and really get a national effort behind changing the leadership at ALSA.  

It's great that you are going. my idea was a parade permit for a funeral durge with music, new orleans style - it's great imagery; everyone dressed in black carrying sings, everyone brings drums or a tamborene, and the "parade" is the walk to the cemetary figuratively, but there was zero response on plm. I could have brought 20 people easily (and i'm just one pals). street theater is where the publicity is, and that's why it's great that the manaquins are coming up from florida.

what john is doing is a step in the right direction, it will help for sure.

one correction i think: 30,000 current pals, 5,000 dx a year.

thanks for going charlie, someone needs to do something, quickly!

- Blue