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

WATER WORLD

It's pretty simple to get in the pool.

I wave to the the handsome Hispanic lifeguard, Lewis (kind and dim).

"Hey Lewis, I'm here!"

I push the walker to the shiny chrome ladder. I use my arm strength to grip the chrome bars - I manipulate my legs with my hands, the way some women push a ropey ponytail - and slide down to the edge of the pool.

I fall in the water.

I pull off my bike helmet.

Lewis (usually) hands me some borrowed goggles and a foam swim support.

I dive easily and (I imagine) effortlessly, dolphin-like, to the bottom. I push out with my hands and try to match my legs in a scissors movement. I'm in water world. My body works in water world.

I don't push hard. I'm told I should never have to fight for breath. My heart should never race.

I swim the breast stroke. I do headstands. I walk. I do jumping jacks.

I swim on my back and as I swim on my back I can see myself in the reflective window in the vaulted ceiling above me, and I think ... are these images of my final days?

I could stay in the pool all night but my mother is visiting and dinner is ready.

I cue Lewis - "I'm getting out" and Lewis meets me by the ladder with my walker.

I try to get out (the normal way) using the ladder. But when I swing my foot to the bottom rung and try to push up, my leg simply doesn't have the strength.

(When I see other swimmers pop out of the pool, not using the ladder, but by pushing up on the edge of the pool with the flats of their hands and swinging their feet up, all in one unified wet rubbery movement, they appear (to me) as aliens with special powers (or at the very least) living examples of the grace and miraculousness of G-d).

I try an alternative exit. I go to the edge of the pool and scoot myself backward onto the lip.

I am now sitting on the edge. I push myself backward, my legs following flaccidly, like I'm paralyzed from the waist down. Because my arms are beginning to weaken, it's hard to hold this position.

Lewis carries a lounge chair over to the wall where there is long resting area under the window to sit on. The trouble is, how do I get up to that sitting area.

Lewis and I have the same idea. Scoot over to the chrome ladder and use THAT to right yourself. So, with some effort, I make my way to the ladder. But once I get my feet in place and my arms ready to heave me up, I realize my legs can offer nothing and my arms aren't strong enough to do the job.

Lewis is patient, his mind turning over other escape routes. I feel like a fish flopping around on deck, caught and vulnerable. I've bit off more than I can chew and I've dragged poor Lewis down with me. It feels familiar.

This is what resonates, I think.

My mom was a great mother but had funny ideas. When I was a kid my mother would sign me up for classes or groups I wasn't ready for. She assumed her children were brilliant.

I skied every weekend (starting in sixth grade with the YMCA). I'd skied once or twice on family vacations in Vermont, but I wasn't any good.

For the YMCA ski trips, my mother put me in the advanced group. On the first day, I took the lift to the top of the mountain and when I looked down the side, I put my feet in the snow plow position and inched down the mountain as if at any moment, I might lose control and drop to my ten year old death. The fifteen year old instructor had to gently coach me down the mountain. And because she was a kid herself, it didn't occur to her to move me to a less advanced group.

So I associated my first year of skiing with humiliation and terror.

I was over my head. And so tonight, with Lewis, I feel the same way.

I give up on the ladder and scoot back to the wall and bench.

I try to lift myself up to the lounge chair - I can't do it.

Lewis hovers down next to me and puts his hands under my arm pits and tries brute strength to heave me up, but even he starts to shake midway and puts me back down.

I begin to picture a crowd of people coming in from the neighboring gym. They circle me and talk about me like I'm a wounded pigeon on the cold sidewalk. I can't let this happen.

I heave myself to the lounge chair, but just barely. I can't get my butt all the way up and I can't lift my head. I'm facing the ceiling.

Finally, I'm mostly there. I put a hand in the air signalling Lewis to pull me up. From there, I manage to heave myself to the bench by the window, and from the bench to the walker.

"There. I'm up. Took a little time, but I'm up."

And Lewis says with his slight urban spanglish accent, "so you didn't inherit this? It just started one day?" Lewis for the first time since I've known him, is beginning to grasp the implications of my problems.

"Nope, I didn't inherit it. At least I don' think so."

Lewis has a child-like expression of concern on his face like he should say something more, but what?

And I escape with my walker to the locker room. Busy and determined, my expression and demeanor saying - "that didn't happen. If you saw that, forget it. It didn't happen. I'll be back."

(I think).

UNDER WATER

The Spring air wafts through the taxi's windows and I think about the paradise that New York will soon become. I wonder if I'll crumble.

My mom and I get out of the cab in front of a nondescript building at east 38th and Second Avenue. We take an elevator to the basement to a (brace and prosthetics) supply company.

The office is windowless, the carpeting foul.

I see chalk white hallways leading to a dozen identical examining rooms. The place looks abandoned except for one bored receptionist. I hear talk radio in the distance. I smell dry erase board - the place stinks of magic marker.

I stink too.

My mother tells me I need I need to bathe. "Honey, you need to bathe, you stink!"

"Mo - ther! I have a fatal disease. Leave it alone!"

The receptionist leads us to a tired examining room. We sit. I notice the ceiling is falling down.

The brace salesman enters. He approaches my eighty year old mother.

"Good afternoon, I just need you to fill out some forms before we begin."

"Whoops! Wrong person. You're looking for me. I'll be filling out the forms."

The salesman seems slightly surprised and hands me the forms.

The salesman looks like an old John Travolta.

He's tall and slim with thick dark hair, sad blue eyes -tired polyester clothes.

He removes my shoes to measure my leg. I'm not wearing socks. I can't get them on anymore. The salesman begins to lecture me on the perils of athlete's foot (and even with my sloppy tired ALS voice) I out talk him, like certain black women do - I over-speak him.

"Yup! I'm well aware of the dangers of Athletes foot. I've had terrible athlete's foot a couple of times in my life. Yes, I should wear socks. But you see, athlete's foot is pretty low on my worry list right now. It's difficult for me to dress as it is and nearly impossible to get socks on my feet and this appointment at one in the afternoon? (believe it or not) this is really early for me. I'm just happy to be here on time. So, think we can move on?"

"Sure... I just had to say something." He half smiles. He got it.

"Yup, and so did I. Let's get me a brace."

I often find myself receiving lectures.

I want to say, GREAT! Come on over, put my socks on for me (or) order that walker with the breaks (or) find me organic cinnamon? Send it on over - here's my address - (or) massage?... hmm.... massage! Hadn't thought of that!!! (or) the Chinese MD who told me that I could possibly live five years because I'm showing such gumption. She grinned at me- like this was good new! And yes, (apartment neighbor) -I know Jesus loves me.

So when a prosthetics salesman begins a lecture on athletes foot, I've got to make an offensive move. I got to cut it off.

__________

We choose the appropriate brace. The (John Travolta look-alike) tells us he'll have to go to a warehouse, a few blocks away, to retrieve it.

While he's gone, I play a game on my iphone and my mother reads an article on her Kindle about Shakespeare's true identity.

She asks me, "Do you think Shakespeare really wrote all those plays? Because this guy, he says that it could have been Christopher Marlowe or even Queen Elizabeth. What do you think? Do you think he could have written all those plays?"

I answer vaguely that I have read something about how Shakespeare didn't own books or educate his daughters... that it could have been someone else, but I'm uncommitted because I'm really focused on my iphone game. I'm really trying to make strides with "Doodle Jump".

The salesman returns, I'm fitted with the leg brace and my mother asks him if he thinks Shakespeare wrote all those plays.

My mother enjoys collapsing the walls of formal discourse with strangers. She speaks with random intimacy to ticket-takers, cab-drivers, receptionists, like they were longtime neighbors or friendly cousins. (It's disarming). And I'm not sure why she does it. Maybe it's to make the big world feel small town.

My mother's question changes the salesman's demeanor and expression.

His voice relaxes and he drops his professional distance.

My mother's tactic (if she has one) works.

The salesman risks some personal information.

He tells us his grandfather was an immigrant from Russia with no real education. His grandfather was brilliant. He could barely read, spoke little English, but he was a genius at creating fake legs and arms. He was the very best in his field.

"I don't think you need an education to create great works of art. Some people, like Shakespeare, or my grandfather say, were born for great things."

I think... how odd, this salesman's life in prosthetics and braces was predestined by his grandfather.

_____________

Somehow the dinginess of the place compels me to speak freely. The place makes me feel bad. They should know it.

As I pay for the leg brace, I tell my mother (loudly, so the salesman and receptionist can hear)

"these kind of places, medical offices and examining rooms, these kind of places should be in beautiful places, like parks. They should be in the woods or in a rose garden."

But the salesman isn't offended. He responds with enthusiasm that he just read an article about this Japanese architect.

"Where did I see that article? Oh yeah, that free paper they hand out on the subway. This Japanese architect is building an office park halfway underwater. It's gonna be all glass. So when you're filing or doing data entry say, you'll be able to look at the fish swimming by!"

__________________

After I pay, I ask the salesman how to exit to the street but the he doesn't really answer me. He continues to go on about this Japanese underwater office building.

I really got him started.

And it occurs to me he missed his calling. He should have been an environmental architect, not a fake leg salesman.

Arpegio @ Lincoln Center

Arpegio @ Lincoln Center
Originally uploaded by Charlie Roberts

KEEP IT SIMPLE

My feet are cold and swollen and blue.

I sit at my desk (a mass of papers, stamps, mess) and ignore them.

JD appears in my apartment. My front door is open. JD comes to force pills down the cat's throat. It's his third day medicating the cat. The cat spots JD and he quietly slips beneath the bed - a delinquent losing a cop.

"Aro0 -oooo!" JD grins. "I'm here!" JD is channeling Jack Nicholson in "The Shining" and

it's pretty funny to watch the poor cat slink away vulnerable and scared.

JD corners the cat in the living-room. I remain at my desk in my bedroom. I hear the muffled noises of an easy mugging. It's quiet and creepy. (What we creatures must go through! Animal and human! Fear and medicine forced on us by the stronger and dominant). This is life.

JD is done - two pills and some liquid medicine - now he is back for me.

"I don't like the way your feet look. How long have they looked like that?"

"I don't know. I don't look at them any more."

"Let's get them up above your head."

"I did that today! For a half hour!"

"Well, lets do it again."

JD instructs on the proper method and I am compliant. I lie on the bed and put my feet flat on the headboard. I stare at the Manhattan skyline as JD swivels the desk chair next to the bed and sits.

I am tumbling. My life has become formless days. People arrive to deliver instructions and machines and things and I have given into it.

I lie and let go.

"How are you?" I ask JD.

"Well, it's funny you should ask. I'm having quite a day. I feel funny complaining to you with your blue cold feet but I was in the dentist chair having my front tooth worked on (JD - oddly enough, broke his front tooth around the same time I did) when I got a call from my tax guy. The dentist was taking a break so I took the call. He said, 'Are you sitting down?' And then he told me that I owe many thousands this year."

"Who wants it?"

"Federal and I don't have it. We only have a little in checking. Ross took her pension early this year and she also made a lot on a few commercial spots. I made some, but it all goes back into the company (JD owns a design and construction company) and we got taxed at 25%. I'm sixty two years old and I've never paid attention to taxes because we never owed much. I just handed it to my tax guy and didn't pay attention. And now I'm learning. The hard way. I don't know Charlie. I really think I want out of this business."

"Finance and money and real estate is so stressful!" I lament.

"You're telling me. We've been riding a wave. We've had a lot of success. We're the best in our area. But with the economy tanking ... this is the second time I've been in the building business. I think I might go back to acting and teaching yoga full time. I want to live in Costa Rica for a while. I'm stressed. But then I look at you and your blue swollen feet and it puts things in perspective."

And I resent JD for using me as a way to calm his own anxiety. I understand it. I'd do the same thing - 'I think I've got it bad - look at Charlie!' - but this kind of thing is exactly why I stay so remote. I've no desire to be a lesson for the rest of the world. Call me if you want to hang out. Don't call me out of pity or because I'm on your list, or to gain perspective. I think JD truly cares about me but it's hard to be the one in the worst place. Always.

JD's cell phone rings.

"I got to take this, this is the guy who owns the bank. This is the guy I owe millions to."

I lie on my fluffy high bed and stare at the brand new neighboring high-rises. I consider sitting up to make dinner or grab a glass of red wine. (It's almost seven). But I stay, seemingly paralyzed, and listen to JD's call as if it were a radio play.

JD is in full focus and form. He treats the banker like they are best buddies.

They won a prize together for restoring an historic ice house.

I listen.

JD's is to sincere and appreciative and overly confessional.

The phone call is taught and dramatic. JD comes off as a guy talking to the mob - trying to make everything family and comfortable - a last attempt before he gets whacked.

JD has several ambitious real estate projects but the economy has turned. There is no money. JD reveals too much to the banker (I think) like he's the loser in a Mamet play. He talks for a half hour.

When he gets off the phone I say, "Well I'm disappointed"

"So am I."

My mind calculates trying to access the best way to approach life and money. Renting a plain jane apartment in a full service building seems to make sense to me all of a sudden. The tables have turned. I use JD to count my own blessings. No banks breathing down my back.

I can see that living humbly without distractions is the better way to go. Men (and women) are drawn to get the golden apple. But in terms of daily life satisfaction all you get is bragging rights. There is little pleasure in owning things or taking on projects or entangling yourself with people who cause happiness -threatening- stress.

I have a list of things I want JD to do

But a doorman from the lobby knocks on the door to tell JD to move his car.

"Will you be back?"

"There's no where to move it."

"JD."

"Yes."

"You need to get in a calm place. Don't react. My tendency is to react to problems that are presented to me, with - 'well if that's the case, then I'm going to do this or that'. I clutch and grab for things. Don't do that. Reacting is bad for you. It's a basic principal of kabalah. Remain calm and focused. Listen. Don't react."

JD listens hard.

He nods.

"Thanks. Thanks for that," and he leaves.