OFFICE for leg braces east 38th and 2nd

OFFICE
Originally uploaded by Charlie Roberts

EASTER SUNDAY

It's Easter. My mother and I miss church so we cab to Columbus Circle and sit on a park bench.

I use my walker to reach the bench. It takes 15 minutes to walk 200 feet.

I'm careful not to fall because if I fall I can't get back up.

I let sweating, panting, muscular New Yorkers pass me and I stay focused on the bench.

The bench is a short walk, a tiny jog away. But for me, it takes mental preparation to reach it.

As I move toward the bench, I try to recall my former self - jogging haughtily through the park entrance. Could my former self imagine this would happen to me?

No.

My mother and I stare (vacantly) at passing New Yorkers - sharing the same lost expression exposing our related genes.

I unbutton my shirt exposing a vee of skin. My skin looks rosy and healthy (to me). Shouldn't it change ?- To make my transformation complete?

The speckled sun feels fantastic. It's 81 degrees. Competing jazz bands play dissonant music. New York City (it seems to me) is the most popular plac

e on the globe. (It bugs me). I try to picture the rest of the world on this perfect Easter day. Is Toledo Ohio (or some city in Nevada) this crowded today... this popular?

I remain on the bench and order my mother to investigate different areas around the plaza and report back.

We stare at tourists. They chain smoke. They look terrible. Why do people mess with their health?

We sit on the bench for three hours and taxi home. I'm reluctant to leave. It feels so hopeful.

________________

When we get to my floor in my high rise apartment building, my mother runs ahead and yells back that ... "You left the door open!" and walks into a stranger's apartment.

I have to shout (as best as I can) "Get out of that apartment. That's not my apartment!"

My mother (who had a stroke recently) deflects my potential taunting by admitting "I'm nuts" - before I can start in on her.

_______________

I start dinner (potatoes in the oven) and mom is off to get us Easter wine.

The wine store is a block away, but still, I'm nervous. I tell her to bring her cell phone.

She calls me from the store and tells me she forgot her wallet. She has $10 on her. She buys an a mini bottle, the kind you get on an airplane.

__________________

Before dinner we notice the cat. The cat is oddly mute. The cat is sick. The cat has a fever, dry nose, and yellow eyes. We stare at the cat and incant the cat's name, over and over, like the cat is drugged up or drunk.

"Aroo." we state.

"Aroo!! " we implore.

"AROOOOOOOO!!!" (snap out of it).

We emphatically announce the cat's name but the cat won't move.

We decide to take him to the doctor tomorrow.

(Turned out - the cat is very sick - and like me, will have to stay in the cat hospital for b12 shots and IV's).

____________________

My mother and I sit down to lamb, potatoes, zuccini, and sauteed mushrooms. My mother has vodka in a wine glass and I sip the mini bottle wine.

We light a candle. We say the family prayer and hold hands.

"The eyes of all wait upon Thee, O Lord, and Thou givest them their meat in due season: Thou openest Thine hand and fillest all things living with plentiessness. Amen."

We eat.

My mother tells me she doesn't want to go to a retirement community.

"Do you want me to start acting like a little old person? Your sister wants to put me away - she won't stop talking about it- that place in Redding. I don't want to go there. All those people talking about what prep school they went to, who their families were! It's awful. Like Sally Bettram. Let me tell you something about Sally Bettram. Sally Betram came over on a boat from England eighty years ago. My family has been here for two hundred fifty years but Sally Betram looks her nose down on me. Her husband was a letch. A child molesting letch. Still Sally Betram couldn't be bothered to say hello to me at the grocery store. I do NOT want to spend the rest of my life with Sally Betram and those people. You know I visited that place in Redding. It's on a cliff. It's not near anything! I drove in there one day to look at it and there was a swimming pool. Not a single person was in that pool. I do NOT want to go to a place like that and be the only one in the pool. I don't want to do it."

My mother is looking at me forlornly, like I have some power over the situation, like I have some political connections that might put her right.

"Mom, you can do whatever you want to do. Tell Sister you don't like that place and let that be the end of it. She's just worried about your safety."

"Well, it's too soon anyway. Maybe I'll look in Florida. I just don't want to be in the middle of nowhere with those kind of people. What about you? Where are you going to go?"

"Oh, don't even think about me. With me, it's a month at a time. That's all I can do. It's pretty likely you'll outlive me. Unless they come up with a cure, or slow it down or something."

"Do they have anything?"

"Not really."

______________

After dinner, my mother reads "Alice in Wonderland" on her kindle. I watch the documentary "No Impact Man" on my laptop, another film glamorizing New York (of the past ten years).

Before bed, I check messages with my ALS Yahoo users group.

There is a posting from a caretaker, a daughter. Her father has had ALS for two years, she writes. Last year they went to Israel to gather stem cells. He's going back soon to have them implanted. "It's our last and only hope. Anyone else going to Israel?"

Stem Cells. I need stem cells.

I need a caring daughter. I am f-cked.

home chelation kit

home chelation kit
Originally uploaded by Charlie Roberts

New York Times Building

New York Times
Originally uploaded by Charlie Roberts

NO MORE PAPER

I lie supine on my fold out chair (my Lafuma) as Susan washes vegetables in the kitchen.

I lie in retreat - like a protected child (or) the blind, being read to.

(Ah yes, scrubbing vegetables, cleaning the floor! I can feel that... remember that).

I tap away on an addictive game on my i-phone.

Susan and I audaciously discuss which nationalities we dislike and prefer. We are both lefty liberals. This makes it okay. Its tongue in cheek.

The Chinese are liars. The Italians sexy and dumb. The English funny cross dressers.

The Dutch seem cool but where did they go? The Danes are having a good time.

The Africans. Too hard to talk about.

We discuss the atrocity of slavery in this country and then worldwide.

If African Americans are angry and defiant - so they should be.

As we talk, I distract myself with my iphone game. I insist Susan try the game.

She kneels by my Lafuma chair and capitulates to my request. She's easy to push around. Whatever I want, I get.

I only have so much time.

Susan's game is interrupted. My sister texts. My mother can't speak and is back in ER in CT.

I go back to the game. I am exhausted from trying to process.

I have to assume my mother will be okay because it is all I have room for. If she isn't alright, I will have to punch out more room. I will have to expand.

I change clothes as Susan tidies the kitchen.

We'll go to a movie!

The Paris (on 58th) is easy for me - there are no cavernous hallways to walk through.

As we taxi there, we pass the (new) New York Times building.

"I love that building, I almost considered applying for temp work there because I thought it would be so great to work in that building."

"I still get a subscription to the New York Times" Susan says.

"Me too!"

"It's a luxury I really can't afford."

"I know but, the paper newspaper is on its way out. So while it's still here, it's fun to get. It will disappear soon enough. Digital, it will be all digital."

"I feel sorry for the Times."

"But then they'll have these foldable plastic sheets. Everyone will carry them around, like water bottles. And the news will just show up digitally on these plastic sheets."

"I love that."

_____________

The Paris is lovely (I've decided). The Paris is the antidote the cineplex. The Paris is my favorite New York Movie Theater (now). The Paris is the hard copy newspaper.

I glide down the aisle with my walker. The slight slant downwards propels me.

The movie-screen is big, the theater - old fashioned. We are two of six or seven.

When the movie starts, I fall in love with the glamour of the big screen. The intoxicating soundtrack.

Susan and I both "ooooh" "ahhhhh" at the expansive beauty like we've never been to the movies before.

"I don't go to the movies much " she concedes. "The last time I went, was with you - (Nine - I was on canes then).

"The Last Station" begins and it's just wanted I wanted to see, old fashioned story telling with sweeping scenery, a rising orchestral soundtrack, excellent actors hard at work in period costumes.

I was fascinated by the diaries. Helen Mirren (Mrs. Tolstoy) screamed at people to put their little notebooks away.

Tolstoy was a Luddite. The movie gently compares today's struggle with technology to Tolstoy's time. The phonograph, the silent films, the reporters (paparazzi). New technology destroying the peace.

And I think about our desire and sentiment for the simplicity of the past.

Susan points out all the surfs in the background throughout the movie. The past may have been beautiful, but only for the rich, for the rest, it was probably dismal.

____________________

We taxi home. I spot (one of those) terrible mini grocery-stores -delis with steam tables and tables and chairs in front.

"See that? That is where I have eaten most of my adult life. And you know what? Sometimes I wonder if that is why I am -where I am - right now."

"What?! You don't think you got ALS from a poor diet? "

"No, but eating at places like that couldn't have helped. All I'm saying, and I'm speaking like Jacob Marley to Ebenezer- take care of yourself, eat right, relax. When you live alone, and you're living under stress, there were days or stretches of time when I simply wasn't taking care of myself. So, take care of yourself."

"I'll have to move in with you.... and torture you."

______________________________

When I get to the lobby of my apartment building there are two large flat screen TVs on either side of the lobby desk.

"What are those for?" I ask Petroff.

"We're doing away with paperwork. No more leaving notes on tenants mailboxes. Every note will be posted electronically. And all work orders from tenants will be done with emails. No more paper work. No more paper."

KITCHEN SHELVES

KITCHEN SHELVES
Originally uploaded by Charlie Roberts

DATE WITH A TUNA MELT

I don't get my full coffee time. My escape into the New York Times is cut short by JD.

JD zooms into my apartment after a morning of yoga in the village.

I'm at the kitchen counter swallowing food.

JD slides his backside down a closet door and sits on his heels. JD, flushed and grinning, is full of young heedlessness.

"I want to see the expression you made when you saw your bed."

(JD made my bed last weekend. He made it taught. I slept on top of the covers. I couldn't get under them. JD wants me to recreate my expression of grateful awe).

"I looked like this" and I make a nonsensical expression of confusion and disgust.

"Sheets and blankets aren't working for me. I need to get a light goose down quilt. Something that I can maneuver easily. Once my legs are under the covers, I'm stuck. I barely move."

"Ikea!" JD says. "They have feather quilts at Ikea! You should talk to Ross (his wife). She's all into the goose-down quilt thing. Ross will point you in the right direction."

The moments of my life leap from the funny to the depressing. You have to have your (face on) when your with me.

________

"Now that I'm here, tell me what to do" JD says.

"Well, I haven't put away the laundry from last week."

_____________________

The day runs away.

There is nothing to be done but accept the help when it's offered. I've become a cheesy opportunist.

"Before you go, can you pick that up? Can you take out the trash? Collect the mugs, the newspapers, the dirty laundry, clean the kitchen, make the bed, pat the cat." - (the cat needs attention).

I sit, tired and achy, and direct JD with the laundry and think...

JD is 15 years older than me. I've counted on that. He looks great. So will I.

I have always had more time than he did. He's been good for advice. Now, I don't know who or where I am (in life) when I am with JD.

This is true also with my friend Nat. Nat and I did summer stock together.

Nat is ten years older than me. Nat until recently had a nasty smoking habit.

I've often thought, "poor Nat and his terrible smoking, what will become of him."

Earlier in the morning I called him.

The bowels of the Sunday Times fell apart all over my front hallway. I didn't want to slip on them.

"I need you for five minutes".

Nat arrives moments later and we chat. Me- unshaven, greasy hair - skinny and bare on my new Ikea bar stool. Nat thick and vibrant and full of small news.

The plays he will see this week. The auditions coming up. News about the Playhouse where we both worked.

_______________

My apartment complex is my whole world.

The familiar voice of Bruce across the hall -(producing his first Broadway play).

Young Lisa (who told me she was nearly diagnosed with MS - "they had it wrong, thank go-d" -and her miniature dog Pogie.

The South American couple next door. (They do cancer research and told me they would look into research for my disease - we never spoke about it again - sadly, there is nothing substantial to report and they don't want to tell me what I already know). They have a new baby!

And of course Spiro my doorman, who always thanks ME when I hand him my walker or ask for help.

The life guard Lewis, handsome, kind and dim. He lives with his grandmother in East Harlem. Lewis helps me out of the pool.

My world is this building.

___________________

I sit with Nat and my coffee. We speak like actors on our fifteen minute break.

Nat tells me he saw the Miller play last night, "A View from the Bridge".

"Oh, I want to see that!!"

"Leiv Schreiber is great... and Scarlet Johanson was very good!"

I tell Nat my Scarlett Johanson story.

"I call Scarlett Johanson, "Date With A Tuna-melt" because, years ago, I waited to see her speak at a talk-back for "Girl with a Pearl Earring". The theatre was packed waiting for her arrival. We all waited a half hour. She got to the mic, spoke for five minutes and then she said,

'Sorry, gotta go, I've got a date with a tuna melt." So I call her, Date with a Tuna-melt".

Nat finds this hilarious. He says he'll have to tell this one to his wife.

He leaves. I sip my coffee for a minute, and then JD arrives. I don't get my full coffee time.

LISTS

Mattie

I did the home kit chelation foot bath tonight. Half a cup for 20 minutes. I guess I can do every day?

I'm eating, eating, eating. ------ I'm still frustrated with my supplement plan. I realized I should be taking creatine away from fruit juice. And I'm taking 800 mgs. Most people are taking 5 GRAMS! So... it hasn't been doing me any good. _____________ I need to start letter writing to get on lists for stem cell. There is so much to do. If I am going to fight. - Charlie

Iv

Iv
Originally uploaded by Charlie Roberts

upper broadway

greeen
Originally uploaded by Charlie Roberts

IPLEX on PLM

Fighting to survive is not for everybody. My dad has ALS. And though I have changed my career to work full time to make a promising treatment available for CURRENT sufferers of ALS, I would never begrudge him or other ALS sufferers from trying to focus on more enjoyable things in life right now.

HOWEVER, to those that have been persuaded by their doctors and by ALSA that nothing can save them: You have been misled. There is no patient voice involved in ALS research, because patients don't live long enough to have a lasting voice. Patients and their families become despondent and give up. The therapies that get attention and funding are the ones that bring grant money to the celebrated research institutions. Existing therapies that show tremendous promise for ALS, but are outside of the scientific partnership for sexy new research will be dismissed. It is your job to remain skeptical when told that others are doing the thinking on your behalf.

There has been a mountain of negative misinformation spread about the prospect of Mecasermine Rinfabate (previously trademarked and FDA approved as Iplex). Yet patient advocates and families who have been around this product and have followed its development regard it as showing the most potential efficacy of any to have been used in ALS, and at least meriting broader clinical trial. Furthermore, because it already achieved FDA marketing approval for a different indication in 2005, much of the development work has already been achieved. People are excited about this because it could be in a large Phase 3 trial and expanded access program soon enough to make a difference in our lives. They are also excited about it because the scientific merit for ALS-specific development is solid, despite what some will tell you.

Giving up because you cannot fight any longer is a respectable choice. But getting duped into the belief that there is no hope for current patients is not.

Please check out the facts. Not every yet- "unproven" therapy is a scam. You can start withwww.PCUT.org, a non-profit organization founded by ALS families to restore access to promising therapies.

Jess, son of an ALS sufferer and grandson of a late ALS sufferer.

laundry day

laundry day
Originally uploaded by Charlie Roberts

ENORMOUS RADIO

Hi Charlie,

Here's a good one from John Cheever (instead of apt bldg, think Patients Like Me) -One of his first successful stories, "The Enormous Radio," is about a young wife in New York who listens to a new radio all day that, strangely enough, is tuned in not to broadcasts but to the conversations going on in the adjoining apartments. When her husband comes home one day she's a wreck.

She sobs:

They're all worried about money. Mrs. Hutchinson's mother is dying of cancer in Florida and they don't have enough money to send her to the Mayo Clinic. At least, Mr. Hutchinson says they don't have enough money. And some woman in this building is having an affair with the handyman--with that hideous handyman. It's too disgusting. And Mrs. Melville has heart trouble and Mr. Hendricks is going to lose his job in April and Mrs. Hendricks is horrid about the whole thing and that girl who plays the "Missouri Waltz" is a whore, a common whore, and the elevator man has tuberculosis and Mr. Osborn has been beating Mrs. Osborn.

The consoling husband has the radio removed--other people's stories may be gripping but they can also have such a sad cumulative effect that they make one's own life impossible to live.

-Blue Skies

___________________________________

Blue Skies-

I know that Cheever story well. That's a great comparison to PLM. I get it.

Here is a funny thing about me with PLM.

I've always been a denial person. I got it from my mother. It has helped her through life.

When I used to look at old people, I used to think - not me- they were sloppy and lazy- I'll be strong and look great.

When I first started reading PLM - I felt the same way. Those problems happened to other people, I'll be okay.

But now I see - that's not the way it works. That's not the way old age works either.

I think I'll fight - like Clipped Wings - but I have to forgive myself for the progression. And everyone else too.

Sorry - deep and dark thoughts.

Cleaning lady over. Radio on. Eating. New fattening recipe I'm pushing? Whole fat yogurt, stir in gobs of peanut or almond butter - add coconut oil. Eat between meals.

- Charlie