Bumble & Bumble (meat packing district)

JANET

Wednesday, April 16, 2008

She was in a class with me. We got to be friends.

She was in her mid sixties (I guess). With a collegiate voice, a knock out body, and zero signs of emotional baggage, you quickly forgot about her age.

I first spotted her while performing Richard the Third in an acting class in the Village. When Richard exalts "And yet to win her, all the world to nothing! ( and here I threw my head back with actorly confidence and exhaled,

Ha!

From the fourth row of the crowded classroom, she "Ha!-ed" back at me, like a kid being goosed by her favorite uncle. Even as I continued... "Hath she forgot already that brave prince", I thought, "wow I must be "on" because that girl with the Mia Farrow haircut and designer glasses is watching me like I just woke up the room, I'm VERY talented and (glasses girl) gets it. After class she made a beeline to my
hesitant exit.

"Hey, hi, hey, I really dig your work"

"Thanks, I guess I was into it. I guess I really relate to Richard... unfortunatly ha, ha, ha."

"yeah, yeah, yeah, yeah, yeah, yeah, yeah."

( I later learn that she is from San Francisco, this must be how people from San Francisclo make small talk... sprinkles of "yeah, yeah, yeahs."

We agree to do a scene from Sam Sheperd's "Curse of the Starving Class. I will be young son Wesley to her mother, Ella.

At rehearsal I learn she is divorced, enjoys a stiff drink and since she abhorted her career for three kids and a house in the LA suburbs she has no savings for retirement, a fear that hadn't entered my anxious brain but guessing her age, I realized she could be in a shit load of trouble since, (gee) she might want to be retiring pretty soon.

At Thanksgiving, we went to the Bob Dylan movie "I'm Not There" on Houston Street.
We walked home after the movie to midtown.
It was late and as we got to 45th street (her place), she suggested we go out for a drink.

"Women NEVER want to walk like that," I told my mother poolside in Florida.
"This woman knows how to stay young... and she never once stopped to re-adjust a strappy shoe or beg to cab the rest of the way. It was me who was too tired to stay out. It's like she's twenty-eight. 

I sometimes think she might be "interested" in me... "and she has three grown kids!"

Her youthfulness used to bug me. What's with all the sunny energy and ambitious outlook? Aren't you divorced? You're a legal secretary, right? Didn't you mention you had no savings? I mean, really.

But, I see now that we should have gone out for a drink at two in the morning. Life can be unfairly tricky. A month later, there would be no more opportunities for a drink at two in the morning.

Around Christmas we got together. We read poetry at the Cup Cake in midtown.
Whitman, e. e. cummings, stuff from the New Yorker, and talk about her obsession, Becket.
At the Cup Cake, something is off. She can't move her head.

"Did you sleep wrong?" I ask teetering in with my whipped americano.

"I went to my chiroapracter. When he corrected me I thought I'd throw up. I'll see my Doctor next week. Dr Leeds on 15th Street. Who I love, the whole family sees him. Great just great.

You gottta meet him. Yeah, yeah, yeah, yeah, yeah."
I told her about my own doctor who ( I think) must of had some recent life changing event. The man was losing it.

Dr Johnson was an (eeny, meany miny, mo) through my health insurance plan, He was a tall handsome-ish, black man with a hair tigger laugh that made me snarl my lip and become instantly obdurate.
Turns out Dr Johnson specialized in AIDS medicine. This frightened me. I thought , if one is to believe in the ways of G-D of (forshadowing) this might be an unhappy coincidence.
I often felt that Dr. Johnson was fondling me when he checked me out. Do I have an out-sized ego? Maybe. But on my last office visit for cholesterol testing, I noticed the portrait of his wife and two kids were missing, replaced by a plain middle aged white guy.

In any case, her neck? Turns out it was a tumor. A tumor in her neck. She got a BAD case of cancer. Like colds, some are bad and some are tolerable, hers was terrible.
But it's okay because she has a ton of people who adored her and now I feel honored that
she wanted to get to know ME. My swanky low self esteem suggested that maybe she's a little off, a little light in the noggin if she's so interested in me. Turned out she had a pile of friends and a first rate attitude and singled meout as someone she needed to know and now I wish I had taken advantage of her solid sunniness and bald intelligence.

One of her last "good days" I escorted her to the BUMBLE & BUMBLE hair salon in the Meat Packing District. She neeeded help keeping steady. I'd never been to Bumble and Bumble. Wow.
I photographed the whole thing. I told her I was miserable at my 15 dollar an hour investor relations phone-office job. She said " I'm jealous."

Her daughters kept a blog. I read it every day.
It looked like she was going for good.
But she had her comebacks.


When I saw her I acted like it was no big deal, like it's a stubborn case of the flu.
"Relax", I said as if discussing an unfair charge from the phone company, "I know a lot of people who've had cancer... as a matter of fact MY lungs don't feel so great."
I always play that card, try to trick the person, (the body?) into thinking they're okay and that it's no big
deal.

The minute you say, did I ever tell you how cool you are... it's over.

(THERE'S THAT GUY!)

I go to the gym in my apartment building.
I see Leah sweating in leotards. I haven't seen her in eight months.

We met working for a charity that helps kids with AIDS make their own movie project.

It's called Hollywood Heart.

http://www.hollywoodheart.org

Leah is smart and fun and and rich (I guess).
She never seems to have a job. (The apartments in my building aren't cheap).
She's blonde and athletic and carries herself like she does improv twice a week, like she could do the HAROLD. Her humor (I imagine) covers up gobs of disappointment.
Leah manages that (neat trick) of being both outgoing and remote.

A couple of years ago, Leah and I went to a Writer's Guild screening of "Michael Clayton".
There were about twenty of us in a small projection room in midtown, in one of those towering corporate skyscrapers on the Avenue of the Americas.

After the screening, the writer/director Tony Gilroy (I think he won the oscar) showed up for a talk back. (He'd clearly had a few drinks). This was his first time directing, he said. I remember him talking about directing Sydney Pollack and asking the venerated director for advice on how to direct a scene that Pollack was in. But Pollack resisted and told him to figure it out himself. Pollack was relishing his moment (just being) the actor. I can just picture that moment, I mean, I can relate to Pollack. I love, that as an actor, your only responsibility is to the character and your performance. A good director respects this, encourages it. It's a great feeling.

Tony Gilroy had a lot of confidence. I wanted to be Tony Gilroy.

We took a bus home after the screening and I remember telling Leah I wished I could write like Gilroy. Leah told me she was shopping for a mini cooper.

So I'm at my gym. Leah spots me across the room.
She crosses to me. I stay where I am. I couldn't slip away for the world.

Leah knows about me (through gossip?)

"How you feeling?"

I muster a healthy sounding voice and cheerful expression.

"Oh, I'm hanging in there."

(I feel fine. That's what I SHOULD say)

"Whadya you do this summer?"

(Leah spent the summer on Cape Cod teaching pilates)

"What did I do?" I respond a little too acidly.

I recover.

"Hmm... that's a good question, what DID I do?"

(I sat on the couch and drank coffee)

After a few more exchanges, we make plans to (run into each other) in the building again!

Ha Ha. This lame suggestion is mine. And when Leah turns to go, I slide along the wall hoping she won't turn around in time to see how decrepit I've become.

I swim in the pool, for 15 minutes, never pushing.
And as I swim, I notice a man in the lane next to me.

(There's that guy!)

I noticed this man a few years ago.

This man is an intense swimmer. He creates a lot of splashing. This man is missing a leg.

When he gets out of the pool, this man is able to hop about without the use of his prosthetic leg. (no problem with HIS motor neurons).

I used to feel sorry for him. He was so solemn when he swam.
When I would sit next to him on the only bench in the men's locker room, I'd glance at his detached leg and feel lucky. As he hopped around on one foot (naked) - I felt saved from life's more tragic accidents. And now I feel like I got the short end of the stick.  I'M that guy.  And the one legged man swims away scott free, his problems contained and solvable.

______________________
I get an email from Leah the next day.

Hey Charlie,

Good to see you the other day at the gym. It's been a long time.

I wanted to let you know that I since I have a car and go food shopping up at Fairway on 125th St. on a weekly basis, if you ever wanted to come with, please let me know. In addition, please don't hesitate in calling me (anytime) if you need a ride somewhere. I'm just 9 floors away.

Talk soon.
Leah

SEPTEMBER 20TH 2009 CENTRAL PARK

photo.jpg
Originally uploaded by Charlie Roberts

SUNDAY IN THE PARK

It's Sunday, and the weather is glorious.
I seize the day like a hungry ghost. 

(Or, like a ghost with a day pass?)

I'll bike to Central Park!
(This could be one of my last bike rides in the month of September - I think - or - try NOT to think about). 

I bike to to the Park.

I bike north through Riverside.

The city is swarming with outdoor, sporty types!
Under the west-side highway, below Trump City, there is a (new) volleyball court planted in the center of a sunny expanse of green fields. (It seems) if there is a vacant spot to plant a bush, create a little park, or build a volleyball court... it will be found and transformed. I dreamed of this for the City (in the eighties) but didn't think it possible.

As I bike, I scowl. I am an outsider (now). A year ago, I'd be jogging down the bike path, shirtless. I'd be cycling to a tennis game on my Schwin with a racket strapped on my back.

Now I'm a faker. I pretend-peddle, the battery does all the heavy lifting. I keep my soiled t-shirt on to hide my (lazy upper body).


Instead of a tennis racket, I carry a book of essays by Mary Baker Eddy.

Still, I pull on the throttle.

ZIP!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

(I can go fast!)

Central Park!

I know this.
I know where I am.
I like this. This is me.
Ah... yes!

I loop the park. The park is a kamikaze course of shirtless men, athletic women, parents and their children, and an army of peddle carts.

I ride by the rock outcropping near 110th on the west side. As you pass the rock, it feels like you're instantly dropping into a National Park. I always (make sure) to bike underneath it, certain of its curative power.

I bike 'round Sheep's Meadow, a place to be included, to be seen.

(I remember napping in Sheep's Meadow two or three days after 9/11. A fire truck drove by, its siren blaring. The entire crowd stood up and cheered as it drove by. (the slow clap)

I end my ride at Cherry Hill Fountain. There is a circle of benches. I sit on a bench, take my shirt off, and point my flaccid torso toward the sun. 

I open the paper.
I read (in the New York Times) how prayer is big business (right now), the teaching of prayer and spirituality. The writer (or reporter) is funny and aloof (and annoying). Even when he was near death himself (he writes) he still wondered if he left his front door unlocked. He simply can't pray, doesn't believe. This is gimmicky writing. (He couldn't have been THAT near death).

I move to the grass and collapse to the ground in one, broken motion. My legs have no power to negotiate. I am up... and then I am down.

I pull out the Book Review and read about Paul Rudnick's new "hysterical" book (so MANY funny gay men writing memoirs). I read about the personal essays and stories of Jonathan Ames. I read a book about the history of jigsaw puzzles, the writer wove the history of puzzles into her own memoirs.

Oh! and I saved Thursday's HOME Section. (I love what the HOME Section comes up with). A woman in Texas, a lawyer, collects depression era HOUSES. She buys them cheap and drags them to her big, old, Texas Ranch. She has 25. I love that. I'd love to have 25 old houses in my backyard.

I lie on the grass. I am healing in the open air. The leafy trees, the dirt, the thriving undergrowth create a rambling paradise that cures. It's all apart of me and I'm in it.


"Gosh, it's so beautiful."

It's 5 pm. I exit through 72nd Street, past my friend Slade's apartment building.

Last time I saw him, we played tennis in the park.

SUNDAY IN THE PARK

thnx Mattie

Thanks Mattie,

I did the stretches in bed today.

I took my herbs with my coffee.

Here at 2 things I picked up from PLM

Exercise

Muscles die in ALS, rigorous exercise can make you weaker. Maybe not everyone but for myself and many I have Known. The reason there is still controversy is that medically both sides have their merits and their warnings. I have heard ALS muscles compared to batteries. They can only hold as much energy as nutrician and rest can provide. over use kills the cell and makes recharging more difficult.

Rob

CoQ10 Supplementation Delays Exercise Fatigue in Study

A new study conducted by researchers from Osaka City University Graduate School of Medicine, Soiken Incorporation, Kansai University of Welfare Sciences, and Osaka University of Foreign Study and published in the journal Nutrition investigated the effects of eight days of CoQ10 supplementation at two levels--100 mg per day and 300 mg per day--on exercise performance and perception of fatigue in 17 volunteers. 

All subjects rode stationary bikes to exhaustion at a fixed intensity on three occasions separated by washout periods. One trial was preceded by eight days of CoQ10 supplementation at 100 mg/day. A second trial was preceded by eight days of CoQ10 supplementation at a level of 300 mg/day. And a third trial was preceded by an eight-day placebo treatment. 

Time to exhaustion was found to be significantly greater in the 300 mg trial than in both the 100 mg and placebo trials. There was no significant difference in performance between the 100 mg and placebo trials. Perceptions of fatigue were also reduced by 300 mg of CoQ10 supplementation. The authors of the study speculated that, at adequate doses, CoQ10 might delay exercise fatigue through its role in aerobic energy metabolism and its function as an antioxidant. Previous research on the ergogenic effects of CoQ10 supplementation has produced mixed results 

A BATH

I take a bath.

I take a hot bath because it helps with circulation.

My legs are continually frigid even in the warmest of weather.

This is peculiar to me, as my legs, my body, have always been oven hot.

I soak my cold legs and read "The Power of Now" by Eckart Tolle

(about giving into the moment, about trying to stop thinking - is what it is about so far).

I'm in the tub and my front door is ajar.

Why you ask?

It's how I want to live, I answer.

It's a feeling about (how life should be) that I'm partial to.

The needs of my soul?

Jackie (my sitcom neighbor) pokes her head in the front door.

"hellooooo? Charlie?"

"Come in, I'm in the tub."

The bathroom door is wide open.

Jackie marches straight over to the bathroom and and I put a loofa over my private parts.

"Jackie! Don't come in so far!"

 "Oh why?! You're like a son to me! We don't care about that kind of thing in my family. You're like a son to me!"

And since I have a fatal disease, I release my propriety. I change character on a dime. I  give in to full frontal. I give in, and Jackie (who could care less) ...

Jackie and I have a conversation about the ORSO I have cooking on the stove, her sister, who is a shy nurse visiting from out of town, and the Beales of Grey Gardens.

Jackie lent me the dvd of the documentary the other night.

"So are they crazy or what? I mean there is something wrong there, living in that trash...  I mean who lives like that,  except terribly mentally ill people? Don't you think?"

Jackie shakes her head and stomps her foot to make an impression on me, to make me see how MUCH this disturbs her.

"But you know what? I kind of get it, Jackie. I mean, they weren't raised to pick up after themselves, and they had some rotten stuff happen to them that they just weren't equipped to handle. I mean, I could see just letting go... living in my dilapidated mansion, eating out of take-out cartons, feeding the cats and squirrels.  After awhile, you just give in and embrace the day."

"They could have put up some curtains or something!  They could have called John or Ted Kennedy!

Those were good men, they would have helped!"

Jackie smiles when she says this, like she found the answer, that had SHE been in their shoes, things would have been different.

"Well, I guess I can see why they didn't call the president or leave that place. After  awhile, you're just holding down the fort, trying to hold onto what you got. You just don't want to risk anything." - thinking of myself, thinking of myself in my little world on the ninth floor of River Place, having not left the apartment in three days.

The timer has gone off.

I lie in the warm tub and Jackie checks on my ORSO.

"It's done, but Charlie, I can't turn the buzer off.

See? That's MY mental deficiency. I have no understanding of how these things work."

(Jackie has the same kitchen as mine but doesn't use it much).

"That's okay, leave it. I'll get it later."

And so the buzzer buzzes,  Jackie leaves, and I meditate about this moment.

Leslie

Hello Charly, Welcome to this site. You will find lots of useful info and good friends. It seems you are progressing slow, or at least slower than I. I hope you stay positive. Greetings Leslie

_______________________________________

Hi Leslie,
Thank you for contacting me.
I haven't updated my profile. I need to update my "progress". I just haven't.
I am in denial so I feel pretty okay every day.

I have always been the type who enjoys self improvement.
Now (delusionally) I feel like if I am creative, healthy, gentle, and keep moving and praying, and not let it scare me, something will happen to save me.

When I read too much about it, I feel overwhelmed. That's not me. That can't possibly be me, I think. Like I'm watching someone else's TV movie of their life story.

I do have some speech issues. (I used to do voice overs for TV commercials for a living).
And my walking is crazy.

But I am holding onto hope that I will persevere.
I've decided to eat organic as much as possible.
I've decided to work out (in some capacity) daily.
As for all these medications? I am lost. So much research. And I don't want my life to be only about this issue.

I'm trying home remedies.
Vitamins.
Hot and cold showers for circulation. Heating pads. Lots of water.
Stretching in the tub. Prayer and meditation.

Today I will "dance and move" to music and see how that feels.

When I read about the inevitable, or talk to medical people who tell me to enjoy this moment because that's what is left for me, I reject it. I'm about hope and progress, and that is what enjoying the moment is for me.

Charlie Roberts

__________________________________________

Hello Charlie,

Thank you for your reply. I can understand your attitude. I also am kind of in denial. I am sure I won't die. (but in the meantime I don't make any plans anymore for the future and I am afraid I won't be there at my steph daughters marriage next year).

I think the good new is: you don't have to bother to much about medicine. I think nothing really helps, The speed of your progression is probably more influenced by genetical factors. Working out Though does seem a good idea. I have read the forum thread of you with clipped wings e.a. about working out. I think it might help. On the other hand I think muscles deteriorate because ppl stop working out, but more ppl stop working out, becouse it becomse to hard. For instances I told my doctor I decided to stop walking, because it made me too tired. But actually it is the other way around: I just could not walk anymore. It costed me so much effort that I was exhausted after a few steps. Now two month later I can't walk at all, but I think: that's why I had to stop, because the muscles where too week allready. Dancing for practicing your muscles is of course great. I am playing the clarinet, which is a great way to practice my diaphram.

Good healthy food is of course a good idea, specially with enough fibres. For the rest I really believe that it does not make any difference which medicine you take or leave. A lot of trials have been done into vitamines, Q10, creatine, Everything seemed very promising, but the trial showed: it does not make a difference. On the other hand: if you are so unlucky to have a specific gene mutation you will die very quickly, or whith an other mutation will live very long. That makes really a big difference. So don't worry too much about what you eat and which medicines you take. I am following the forum thread about stem cells, but I don't believe that it will help one bit. But who knows? I am participating in the Lithium trial. A few month ago there was a big hype of people who were certain that would give the cure. Now it is LD Naltrexone (that's the word I think). Tomorrow they will run after something new. I put my hope entirely on good scientifical research. I maybe wrong of course.

In the meantime: you don't have to worry about your disease. Just try to live a life as happy as possible. The future is something for tomorrow and may not even happen.

O this was a long reply. It's was just for me to vent my feelings. Thank you for listening.

Good luck,

Leslie

to Greg

Hi Greg,

Saw your comment regarding acam and gluthotione.

And I read your profile. 

I used working out to keep me sane.

I biked every where. I would go running, workout and play tennis all in one day.

The more tired I felt, the better.

When I came to face this, I sat on the couch. Angry. Lost.

But now I've decided to go to the gym every day anyway.

I used the lowest weights. I do reps of 5 to 10 each. I lie on the mat and stretch.

I swim, but I'm careful not to feel my arm muscles building.

I bop around, kick, swim under water, hold my breath.

This makes me feel better mentally. And I think the body follows the mind.

So I put exercise back in my daily routine.

In the mornings I've been stretching in the tub in warm water.

As to medications and supplements, it is ALL so confusing.

I'm making sure to eat three big meals a day. Drink water.

I'm going organic. I may reduce dairy and wheat.

Tons of vitamins.

A chinese chiropractor told me to use a heating pad at night in bed on my legs to keep my circulation going.

I'm doing glutathione and b12 at a clinic.

But as to all the mediations, I am completely confused.

My doctor in New York (who is well respected but I didn't care for) told me I could cause myself more harm than good by taking lithium and other drugs... 

Anyway I thought I'd share my course of action... beyond just sitting on the sofa.

SURVIVOR

About six years ago, I saw a friend do (stand up) at "Don't Tell Mama" in midtown.

One of the comics that night, was from the show "Survivor".
"Don't Tell Mama's" was packed.
I was the last one to squeeze in.

I had to sit down front.

After I got by bearings, I looked around and realized the entire room was filled with "Survivor" contestants (old and new). I was one, of  handful of people. that wasn't from that reality show.

It was (of course) surreal.

It was the year that  Ethan Zohn won. And there we sat, elbow to elbow at the same table.

Ethan Zohn: 'My Cancer Is Back'

By Mark Dagostino

Originally posted Monday September 14, 2009 07:55 AM EDT

Ethan Zohn

Just last month, for the first time since being diagnosed with a rare form ofHodgkin's disease in April – followed by three months of intense chemotherapy – Ethan Zohn was finally feeling good.

"I was off chemo," he says. "I was running up to seven miles" inpreparation for November's New York City Marathon. "I was happy, I was going out. I went up to Boston to see the family and was feeling great."

WATCH: Ethan Undergoes Final Chemo Session

Then, on Aug. 26, his doctor called with post-chemo test results – and they were not good. "My cancer is back," Zohn, 35, tells PEOPLE. "I have never been so scared in my life, for my life."

"It was a complete punch in the face," says the Survivor: Africa winner, who had been making regular video diaries for PEOPLE.com. (Stay tuned for the latest chapter.) When the bad news hit, Zohn decided to wait until doctors started him on a new course of treatment before sharing the news with family, friends and now the rest of the world.

WATCH: Ethan Thanks Fans for 'Awesome' Support

Family Reaction

"My mom was obviously upset," Zohn says. "My brothers – everyone's upset. They can't believe it's what's happening. But on the flip side, everyone's positive and supportive."

He adds, "You have to think positive. And you have to find the strength, which I will. And you have to rely on other people, which I will."

The chemotherapy Zohn had endured since May left him hairless and plagued by nausea. But it did have some positive effect: The mango-sized tumor in his chest shrunk significantly. "The original mass is pretty well contained," Zohn says.

That's the good news. The bad news showed up on PET and CAT scans: "There was re-growth," Zohn explains. "Two little nodules in a different location … It's quite rare that not only is there re-growth, but that there's re-growth so quickly. I was obviously resistant to the first form of chemotherapy."

Now, doctors have ordered a stem cell transplant aimed, as he puts it, at "hitting the reset button" on his body.

New Treatment

The new treatment – officially called risk-adapted high dose chemoradiotherapy and autologous stem cell transplantation for patients with relapsed and primary Hodgkin's lymphoma – will take place in three stages.

The once-shaggy-haired soccer player just emerged from the first part of stage one: He spent three days in a hospital last week, where he received a combination of chemotherapy drugs referred to as ICE. Since Zohn's immune system was in such a fragile state, his girlfriend, Survivor: The Amazon winner Jenna Morasca, slept in a chair at his bedside each night dressed in a hospital gown, protective mask and rubber gloves.

After three weeks of rest, he'll return to the hospital for a second in-patient ICE treatment that will last four days. Doctors will then harvest healthy stem cells from Zohn's body and freeze them for later use.

"In stage two I will get blasted twice a day for 14 days with a high dose of radiation," Zohn told friends via e-mail last week. "In the final and most difficult stage, I will be admitted to the hospital for 30 days (yes a whole f'ing month), to get my final chemotherapy session to start my stem cell transplant."

Remaining Positive

Zohn says that both his red and white blood cell count will be brought down to zero during the month-long hospital stay – most likely in December – at which time his frozen, healthy stem cells will be reintroduced with the aim of replenishing his body entirely with non-cancerous cells.

"Then I'm cured," he said in his e-mail to friends, showing his usual air of hope and humor. "Easy as 1, 2, 3 … 4, 5, 6, 7, 8, 9 … 1000 … 1,000,000."

As he has since beginning his battle, Zohn is vowing to remain positive. "Whatever things are thrown at you, you've got to battle through with a smile on your face," he says, "and the important people in your life around you."

THIS IS STUPID I KNOW

I  can't walk well.
I am scared to swallow the vitamins I take all day.
I am stuck at home because my bike is broken.
I haven't been outside in three days.
I have no TV.
I stagger too much to pick up after myself.

But...

I feel optimistic.
I feel like... if I do all the right things, I'll be okay.

(This is stupid. I know.
I know there is nothing out there to support this).

But.

I feel like, if I stay relaxed, if I stay creative, if I am sensitive to my body, if I don't panic, if I don't let others interfere with my sense of well being,  interfere with my enthusiasm and hope, I will have an opportunity, an opportunity that will revive me.

Last night, I slept twelve hours. In the late morning, I had my one cup of strong coffee and read the Times. I read an article about Jules Feifer's wife.  She has a new (one woman show) about surviving cancer.

I think... I guess... I wouldn't be able to perform a piece about my disease. It's too dire. No triumphant comeback here. My disease is ugly, not to be looked at. Too cold and glaring. I guess.

(I don't think about it, much. I don't have to distract myself about thinking about it because I have no interest or natural talent to understand it).

(Someone died today (on my "patients like me" website) of pneumonia. Never occurred to me that that would be the end. I mean, everyone dies of pneumonia. I guess that pneumonia is just waiting around  to finish off the job for all the lazy and undisciplined diseases,  like vultures after the body has been ripped apart).

In the article about the play about cancer, the playwright mentions C. Sheer as an inspiration, and (also)
E Handler.  Sheer I know quite well from a two year acting program. And Handler I've been in several readings with. Perhaps I should read their plays for inspiration, or just to copy them.

the cocktail

The good news is I am officially on SSD and medicare.

I'll receive a check starting this month and medicare kicks in this month too.

No more $450 monthly payments to SAG insurance which is good because my last check bounced (I think).

I'll get around $500 a month from my pension unless I take a lump sum.

The bad news is that I'm on social security and medicare at 46 years old.

BUT.

If I stay healthy and can slow or stop progression, there just might be some breakthroughs around the corner.

One fellow ALS person compares it to AIDS and some forms of cancer.

They may not find the cure but perhaps they'll find away to keep people healthy.
A cocktail.

patients like me... I guess.

I sit around and read from the website "Patients Like Me".
I look for patients that are my age and sex.
I want to get ideas for supplements and therapies.

I find Drew.
Drew is 36, male and from Stamford Conn.

Oh good.

I go to his profile.

Nice looking guy, a hockey player.

I read,

he's been to China three times for stem cell therapy!

He is charged up.

He writes he's

"HELL BENT ON BEATING ALS AND I'M NOT MARRIED AND I DON'T HAVE ANY KIDS- ALTHOUGH, I WANT THEM! ... I THINK THROUGH HARD WORK AND RESEARCH - WE CAN BEAT ALS."

I like the way this guy thinks. Why was I listening to that doctor at Columbia Presbyterian?
I should be going to China. This guy is on a lithium too.  Something my doctor discouraged.
It could make you worse,  he said.

Drew doesn't care, and neither should I.
It's my life and I want to fight this thing!!

There are photos of Drew swimming. Pictures of him with his PT.

And he has a blog!

(I should write in my blog).

Let me go to his, and see what his blog is like.

And I read;

Our Drew lost his battle with ALS on Tuesday April 7, 2009. His family would like to thank all of the people who made Drew's journey a little more bearable by following his blog, leaving notes of encouragement and comments. He will not be forgetten.
Thank You,

The Schroner Family