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

COMMON SENSE

John,

I am going to DC. I will bring cameras. Maybe a video camera. I know how to edit video.

At the risk of sounding dense, I simply don't understand CLEARLY what all the issues are.

(In my defense, I live alone and take care of myself (right now). There is little time for me to investigate and research, and when I do, as you know, it's often hard to take).

I understand there is nothing for PALS. I understand the FDA is a lame slow government agency stopping PALS from getting needed experimental medication that has proven to be helpful.

I understand there is no public awareness of what ALS is. One million people contract HIV each year (sadly). People rarely die of AIDS anymore because of awareness and medical breakthroughs.

Just thirty thousand people (a year) get ALS. We have nothing. It is hard to be heard. I get it.

I understand the clinical trial system (as it is), is inappropriate for people with a fast paced lethal disease.

I am UNCLEAR who to be angry with and what steps to take. I hear about how inept ALSA is, but I don't know why. 

I am unclear of what the most important issues are. I suspect I will learn a lot in DC and I bet I will get depressed from what I discover and then enraged by how ineffectual everything is.

I am with you.

I am bothered when health care givers in the ALS world smile meekly at me and tell me to "live in the now! Be grateful for today!" - "Atta boy!" I pay them, and they blithely go off to their happy lives. Nothing is changing. There's something creepy about it. 

From your posts, it appears that you have taken on the research.  It would be helpful if you posted what changes need to be met. An outline of sorts. There needs to be thread about it. 

We need our own version of Thomas Paine's "Common Sense."

-Charlie

CAMERA

THE HUDSON RIVER

park

park
Originally uploaded by Charlie Roberts

LOGAN'S RUN

Jackie (my 72 year old neighbor) pops into my apartment to ask me if I need anything from outside.

I'm sitting on the couch with cushions piled under me so I can stand up again.  I'm reading threads on "Patient's Like Me" my ALS user's site. Jackie stands before me, animated and energized; like she came in to do a monologue. She tells me she had a dream about her father. He winked at her.

"He's trying to tell me something, but WHAT?! I just don't know. And Charlie, he looked so young!"

(pause)

"Do you know that everyone on the other side is thirty."

This I find hysterical. I laugh so hard I cover my mouth so I won't drool.

"WHAT?!!! It's true. Haven't you heard that before? I'm not making this stuff up.
In the next world everyone is thirty!"

"Jackie, what happens if you die at twelve?"

This quiets Jackie, but only for a moment.

"Charlie! I don't know. You'll have to read the book. Sylvia Brown. Have you read her?"

"No."

"You want me to get her book out of the library? I'm going to get you that book Charlie.  Sylvia Brown! She could really be important for you."

LUCY

I sit in the lobby of my apartment building because it's too cold to go outside.
I spread out on a low, round sofa and watch the tenants coming home from work.
I read about Stem Cells.

I find human biology fascinating but as I read, I'm alarmed at how little we know.
(We don't really understand how RNA directs DNA (I guess).

I've never paid attention to medical research.
I'd vaguely heard of the Genome project and Stem Cell treatment.
I assumed we were living in the age of "The Jetsons".

We're not.

There is much to be learned. And what occurred to me after getting through a third "Stem Cells for Dummies" is that in seventy-five years, we'll have it all figured out. People won't die from disease. In a hundred years, people will be appalled that people died from cancer or ALS.  Stem cells and gene therapy will change everything.

(The Bush Administration greatly slowed the progress for stem cell research. People will die because of Bush's religious convictions. I'm not interested in politicizing - but I despise Bush for halting stem cell research because he cozied up to Billy Graham.

* (I just read in "Stem Cells for Dummies" that Billy Graham has Parkinson's, another fatal neurological disease).

* (Bush didn't stop stem cell research. He actually allowed it to begin. But only with existing stem cells.
Most of these stem cells were ineffectual, too sick or too old? He also greatly restricted federal funding for research. Obama, overturned this in March of 2009.
___________________________________

Obama's move overturns an order signed by President Bush in 2001 that barred the National Institutes of Health from funding research on embryonic stem cells beyond using 60 cell lines that existed at that time.

Obama also signed a presidential memorandum establishing greater independence for federal science policies and programs.

"In recent years, when it comes to stem cell research, rather than furthering discovery, our government has forced what I believe is a false choice between sound science and moral values,"Obama said at the White House.

__________________________________


After reading for a couple of hours,  I try to stand up, but I can't. I can't get up from the lobby sofa. I can't find the strength.

Spiro (my doorman) has taken me on as his responsibility. Spiro is a miracle of human energy. (The New York Times should do a profile on him). He stands by the sofa waiting to assist, my walker at the ready, but no matter how hard I try, I cannot stand up.

Spiro places the palm of his hand on my heart and says with his crazy Albanian accent,

"It's okay."

I shake my head in disbelief.

"No, it's good! Take your time. I'm here. No worries from me."

And I can't help but grin. How is it that I can't get up from this sofa, but last week I could?
It's like some kind of gag. I'm Lucy in the freezer.

After much effort, my upper arms throbbing from overuse, I stand up.

BLUE

I wield my walker through the men's locker room hanging onto towel hooks and doors handles to steady myself. I feel plucky. I imagine the guys in the locker room both pity and admire me.

(My slow, solemn movement isn't me. I'm acting a role).

I shower and use the steam room.

I have a couple of friends in the stream room. Tonight I see .... um .... his name is a simple word like "Here" or "Have" or "Then" or "Above." I can't remember it now. Let's say it's "Above".

"Above" is dark and Israeli and kind of good looking. He's walks around nude and is so relaxed about it, it eliminates any lewdness. There is nothing naked about his nudity.

"Above" is kind to me, almost ingratiating: a gigolo looking for his next mark.

"Charlie! Let me get that. Do you need help. Here hold onto me."

"It's okay I got it. Thank you. I'm sorry I forgot your name."

"It's Above. Like the word! It's Israeli. When you think of me, just think he's not below, he's Above!"

(He must have to say this over and over. I could learn a thing or two from Above's patient disposition. I go dead in the eyes when people ask me about my name, which isn't Charlie, which is something almost as trying as "Above".

"Above! Simple enough. I think I can remember that." (I guess it isn't because I can't remember his name for this blog entry).

"Hey, what's wrong with your voice?"

(I haven't seen Above in a couple of months and my voice is getting weird).

"Don't tell me this thing affects your voice?!"

"Yeah."

Above hangs on and waits for more. He's drawn to me. He wants to hash this out.

I let it hang . What else is there to be said?

"Is that an Israeli accent?"

"Yes it is. I was raised in Brooklyn but moved to Israel when I was twelve. I've spent most of my life in Israel. Are you Jewish?"

"No. I often get asked that. I'm christian. I'm mostly English. But one of my great grandfather's immigrated from Whales. Some people say that the Welsh are the lost tribe of Israel. Have you heard that?"

This delights Above.

"No I haven't. I haven't heard that Charlie but I like that. Charlie, can I ask you something about what's going on with you? You don't mind talking to people about it do you?"

"Well Above, let me put it this way. If I were the color blue, people would be questioning me about my color. I 'd have to talk about blue a lot. It gets tedious talking about blue. I just got off the phone talking about blue. I don't always want to talk blue. Let's talk about you. How are YOU, Above?"

"Well, now that you mention it, I'm feeling very angry. My girlfriend, it's not working. We fight.

I can't take it anymore. But it's her apartment. She's in charge. I don't know if I can keep this up. I feel silly talking about problems with my girlfriend sitting next to you."

After my sauna, I plant myself on the one bench and begin the process of dressing myself.

Above pops his head into the changing area and says,

"Charlie, good talking to you. Feel good."

"You too. And best of luck with your love life."

"My love life yes. I will. And Charlie?"

"Yes?"

"Don't be blue."

STEM CELLS

Olivia -

I'm reading Stem cells for Dummies to catch up.

There is a reputable place in Monterrey Mexico associated with John Hopkins that's doing stem cells for ALS. PALS (people with ALS) rave about it, but there haven't been any meaningful results, as far I can make out. It's NOt the one in Monterrey that was on 60 minutes. Did you see that tonight?

I sent forms into to Louisiana and Atlanta for the FDA stem cell trials. I don't know if I should be bothering with more letters or how people get chosen.

According to some scientists it could be decades until they get a cure but they might discover something sooner to slow it down greatly. Like the AIDS cocktail.

Someone recommended I take cinnamon and honey every day. It's supposed to be good for your immune system. Cinnamon from the grocery store isn't really cinnamon, I discovered. And in large quantities could be harmful? (I don't know).

Thanks for going on the walk. I'm going to DC for an ALS Awareness weekend in May. I think I'll meet my New York state representatives. It should be cool. I'll meet a few of the people I've met on PLM.

Hopefully the weather will warm up.

So I can get to the park this week.

Maybe we can meet there.

I take my schedule a day at a time.

It feels like I have no time. I guess because everything takes me so long.

And I sleep nine of ten hours.

Charlie