Saturday, August 28, 2010

CRANK

My right arm is thinning out. I try to open a can of cranberry sauce but discover (like the shock of realizing you've been robbed in the night) I'm too weak to turn the crank. This is why I find it hard to concentrate: it's hard to hold a concept of who I am.

I'm conditioned to think that I can fix myself, get better, next month is a better me - I have time. But this is no longer true. In fact, the opposite is true for me. (This is unworkable. This is an impossibility).

I read an article about the Belasco Theatre in the Arts Section.  I then google David Belasco, Mary Pickford, Madame Butterfly, and Puccini.  I forget I can no longer turn the crank of a can opener.

Thursday, August 26, 2010

West Side Highway


West Side Highway
Originally uploaded by Charlie Roberts

Monday, August 23, 2010

EAT PRAY LOVE

Francisco, the Brazilian male visiting nurse, returns. This time he's more bossy, less flirty.
I play the role of the feeble old man.

I show him the new cut on my right foot and Francisco grows impatient.
His grin wears thin.

"How did this happen? (checking his paperwork) Where is your sister? Does she live in the building?"

"My sister? No." (I'm laconic)

"Perhaps you should wear some protection on your feet. Yes? Did you remember what I told you?"

"What did you tell me?" (weary)

"The last time I was here."

"Oh. You said... to ..." (catching up)

"I said that I would like you to eat more protein to protect your skin, and you must move around in your chair, change your position every fifteen minutes ... (finish with big smile) and put some foam or a pillow under your feet!"

I nod obliquely, to pacify the Latin nurse, as though English were my second language.

Francisco's requests seem do-able but also (somehow) impossible.
I'm advised to do countless curative chores. The wellspring of health-giving suggestions is so staggering, the day turning into a list of exacting chores - I often do nothing.

(Besides, I've been told by top doctors that nothing can stop the course of the illness besides a news breaking medical break through, or a divine miracle - "we're not G-ds!" they say, so there is nothing left for them to recommend but to encourage me to enjoy my day.

(Your days are numbered. Be happy. RIGHT NOW).
________________________________________

I make plans to get my stupid passport tomorrow.

I scream into my phone to "Access A Ride". The women who take down the information are rude, aggressive and simple. They lack empathy and intelligence. I tell them up front that I have difficulty speaking. This has little impact.

So I yell.

Mary looks out nervously from the kitchen.
________________

After lunch, Mary tells me about her life as an aide.

She loved her first client, a 92 year old man in Staten Isaland who taught her checkers. They played every day for two years.

At some point, she decided to go home to Trinidad, but the old man couldn't live without her so he begged her to come back and paid her expenses to travel back to the states. When he died, he left her everything in his house (which she refused). "I already have too much."

She told me the last woman she worked for (now in a home from arthritis - at only 70!) She had fired all thirty- four  aides before she met Mary.

I feel bad, because Mary makes her money by living with her clients. I only need her a few hours a day and only every other day, and even that feels like luxury. And I have to say, horribly, like my electric bike, delivered groceries, and cleaning person, I wish I had spent the money for an aide when I was healthy. I think it would have been worth it financially. I would have made more money because my life would have been better.
_______________

I take my wheelchair to the movies and see "EAT PRAY LOVE" which was fine -which was good enough. And the movie reminded me to smile with my liver and get back to prayer and spirituality.

It's fun to watch Julia Roberts make expressions. Being in Rome was fantastic. I love that city.

_________________

On the way home the sidewalks are so broken up I get stuck on the corner of 42nd and 8th. I throw up an arm to a young man who rushes over and gets me unstuck. I wheelchair across the pedestrian walk and he continues to  keeps an eye on me from across the street.

As I make my get-away from my hero, I consider how I was a healthy muscular man (like him) just two years ago. People see people in wheelchairs and assume that this has been their life.

I wonder if the young man would be shocked to hear my story, to know that (two years ago) I was hopping on a bike to play tennis in Central Park.

(This is how old people must feel. If you only knew what I was like before).
_____________________________

John, a friend from "Patients Like Me", died today. He was my age, 38, ok .... 47. He had ALS just three years. He had just finished building a home and had a baby girl when he was diagnosed. I used to write to him because he, of anyone on PLM, sounded like he could lick this. It calmed me to write to him.

His departure... I can't process it. I'm kind of numb to fear. I guess I figure, well, I'm still alive ... tonight.

And part of me is jealous that he got it over with.

I know that's messed up. But the pressure to do the right things to keep yourself well, it's like that feeling of being overwhelmed during school and you're just waiting for summer.

In a way, I'm waiting for summer.

Unless someone tells me otherwise.

______________


Below is what John wrote on his profile for PLM. I had it copied and  pasted  to my desktop (for a while).











1. Forget the drivel you received at diagnosis about 2-5 years life expectancy. This is only true if you choose not to fight.


2. Utilize the internet and other ALS patients with a progressive mind to build your knowledge of ALS and potential treatment options. Knowledge is power, and within months you will probably know more about ALS than your neurologist.


3. Antioxidants, the single most important category of supplement for ALS patients. Every pALS has extensive mitochondria damage due to oxidative stress. This gives rise to mutant astrocytes that have a role in the death of our upper/lower motor neurons. Recent studies are showing that our motor neurons can be supported in this hostile environment with mega intake of antioxidants.


4. Exercise. If you can still exercise, it is vital that you continue to do so. Studies are beginning to show the value of light/moderate resistive and aerobic exercise in slowing ALS progression and increasing quality of life. If you do not exercise, you will experience disuse muscle atrophy in addition to the ALS atrophy. Your objective is to maintain your health as long as possible in order to take advantage of stem cell procedures or potential drug therapies.


5. Maintain maximum intake of healthy real food. Much of your antioxidant content can come from real vegetables, organic if possible. Resist the easy temptation of liquid formula nutrition. While the human body can subsist on formula, it cannot be healthy on formula.


6. Don't become depressed by the depressing topics on PLM. Learn to study personal profiles and pay close attention to the pALS who are dying. You will see that those people who are quick to put an extensive plan of survival into action do relatively well, compared to others who quickly die. Remember, you must stay alive to take advantage of upcoming treatments.


7. It is your life. Are you worth fighting for? Use my profile as a reference. I am here to support you in your fight and can be reached via PM. There are no stupid questions.

Friday, August 20, 2010

THE STARS IN THE SKY

I can't find my passport.

I spend the day going through every drawer and box in my apartment with my health aide, Mary.

We can't find it.  I need a new passport.

I google "passport, photos, New York City" and choose a passport photographer near Central park. I make an appointment for "Access a Ride" (the taxi-van for the elderly and disabled). The van picks me up at four.

We get caught in mind blowing traffic crossing Central Park South.
I sit chained into my seat. The air in the "Access a Ride" van is frigid.

Through the van window, gorgeous New Yorkers roam the edge of the leafy Park, healthy people with sunny futures who have no clue of their sumptuous freedom, their priceless health. I stare. I glower. And then I numb.  I try to forget I exist, as if by denying my own existence, the disease (my doom) will fail to exist with it.

I turn my focus inside the van.

I share it with a young (seemingly) able-bodied woman. She is quite fat and and coddles her cellphone, sometimes murmuring into it.  I fondle and gape at my phone too (I notice). The two of us are like toddlers with popsicles.

(I feel weird using this van for my own little needs, burning gas, clogging streets, wasting tax money. The only reason I deserve such kindness, I figure, is I am dying and the city is trying to make it up to me (somehow).  Now that I can no longer fight, the city has regrets.

My ride ends on the weird upper east side. This part of the city is noisy and colorless, a cousin to midtown. There are lots of shoe stores, and bank after bank after bank. There is a line around the block for a new "Shake Shack".

We pull up to the sidewalk and the driver, unleashes me. The ingenious little elevator is sprung to action. I wheel onto the metal stage and am lowered onto the pavement of east 86th street near Lex. People passing stare but don't pause. I wheel, alone and corageous, to the photo store. 

The store has a raised ledge at the entrance. The ledge is too high for my wheelchair.  I consider giving up, I'm ready to, (defeat comes easily to me) but I give it one bumpy awkward thrust... and I’m in.

I'm met by an attractive indolent French sales-woman. She leads me to a corner of the store and then beomes quietly annoyed when she discovers she can't use the preset backdrop and stool, because I can't get up out of my wheelchair.

The French woman  jerry-rigs a poster board to the back of the wheelchair. She’s roboticly patient but you can tell she’s irked.  
We get the shot.

I smile and thank her from my wheelchair but she's still tight-lipped so I win her over by offering cash for the overpriced photos ($36 for four). She seems happier now. She hands me the pictures. "Not bad. Want to take a look?"

I look surprisingly healthy, except for my smile which is   lopsided where muscles have atrophied. A visible scarlet letter. One eye looks vacant. It shocks me.

As I pay I notice a display with rolls of kodak film behind the counter.

"Do people still buy film?" I ask, still in her good graces.

This is the kind of random thing I love to ask, and I guess I'm hoping I'll get some kind jaw dropping answer like, "they've stopped making film and this is the last of it! It's very valuable!" or  "Film is making a huge comeback! Don't throw away your old SLR cameras!"

But what the French woman offers is mundane and boring so I barely listen. Something about "some buy film, others don't, it depends" etc.

She hands me my photos in a navy blue card that looks just like a passport and  runs over to hold the shop-door open like she’s shueing me out.

"Thank you!"

“Merci” I say and I thur-UMP! - over the threshold - and am once again out on noisy 86th street.

I look down the street and see Central park. I decide to go to the Park but worry if my wheel chair battery can sustain the trip. I am viable as long as my batteries are and then it's 911 for me.

As soon as I get inside the leafiness, I notice the weather is perfect. It's the kind of air you would choose for the eternal hereafter. The gentle breeze caresses and cleanses. It's brisk and wholesome like in a  State Park.

I wheel along the loop to Cleopatra's Needle (an ancient obelisk) donated to the park from Egypt (in 1886?)
It's very tall and very old, a gazillion years before Christ.

I put my feet up on a bench that faces the obelsik.  From where I sit, I can see runners and cyclists below on the loop. They seem so hard on themselves, so striving, to not fall behind, (so self punishing for not owning a floor-through apartment in one of the elegant townhouses they pass).

I pull out my book when a cyclyst rides by me. He dismounts his bike, points to the monument and says,

"That's the oldest thing in New York City. Egypt gave it the United States to win trade relations. There's a twin in London."

I hear a New York accent and I see a thirty-ish man with a short regular body, and a plain unwatched face. He skips introductions and starts talking at me, an ernest panapoly of fact-isms.

"It's from a couple of thousand of years before Christ. Took two hundred horses to drag it here from the Hudson..."

I barely respond, because frankly it’s hard to understand me, my speech is  muddled.  But it doesn't seem to bother him so I decide to let down my barriers (too high anyway) and listen to him talk about religion, the economy, and the how nano- technology will change the world - "just like the combustible steam engine did".

My park bench friend, I find out,  is an out of work real estate broker, 

"rentals and retail mostly, notice how many storefronts are boarded up? The banks aren't lending out money... we haven't seen the true fall out yet because it's all been papered over."

And later he tells me, when we get to what's wrong with the world,

"The money system is what has destroyed the planet. There is plenty for everyone but the money system creates the illusion of scarcity. You DO know that the government pays farmers not to grow potatoes. There should be plenty for everyone. We should all be living full lives, contributing to society. People working in Duane Reede are wasting their lives, they should be studying, thinking, traveling, creating. Robots should do all of those jobs.  People are afraid of robots but they shouldn't be. "

I'm impressed with with my park-bench friend's ability to elucidate.

He DOES, however, seem a little on the "spectrum".

I use the word "spectrum" because of my friend Car.  Car’s son has Asperger’s. When Car refers to the spectrum, she's means the Autism spectrum. According to Car, all us are on the spectrum, each to a different degree.

But even if my park-bench friend is on the "spectrum", I'm still jealous. If I sat down and talked a blue streak to a stranger on a park bench, I wouldn't have anything to say. I'd have to talk about entertainment gossip.

But I stay on topic and try to add a point about the world economy by using my "Paperback Swap Book Club" as an example. This is a website where you can swap books for free, rendering the value of all books only worth the price of postage. The internet is playing witht the value of things.

This not exactly where my friend was going but still, he's encouraged and we move onto other topics.

"Soon, everyone in the world will carry around the entire world's knowledge on their own personal laptop."

"We will develop a universal language that will leave little room for interpretation. English is too flexible."

"Last year all fifty states had snow but the humidity this summer is the worst it has been in years. And while we are suffering in the heat, South America is having an unusually bitter winter. You eat cereal? Russia is having a terrible time  growing wheat! Every day, there are long and skinny dust storms stretching from the North  to the South Pole on the surface of the moon."

I ask him how he knows all this stuff and he tells me he reads a lot of it on the web.

"When I was a kid it was encyclopedias."

And then he  asks me if I hurt my back.

I tell him I am sick.

Unfazed, he asks with what.

I mumble I have motor neuron disease.

(I can't bring myself to say ALS. When I say ALS, I feel like I invite a dialog of sadness and apology).

I tell him my body is breaking down.  Last summer, I was riding a bike, this summer I can't walk.  This summer, I have trouble talking and eating.

He doesn't flinch.

"You need to invest in your mind. I bet you've been doing a lot of deep thinking. Most people are wasting their lives thinking about trivial things.  Keep your spirits up.  Explore the mind. I bet you take a lot of medicine."

"There is no medicine for this disease."

"Oh."

And then he smiles, happy to relate some information he has  never spoken of before,

"Have you heard about Tong Ren?!  Really amazing guy who works with one of those little dolls and pins, you know what I mean, to heal people. He has a website.  Does it all over the internet.  I mean, since there is no medicine, what have you got to lose? Right? Do you have a pen?  Write this down."

I dutifully find a pen (too easily -like the whole thing was staged) and I write down " Tong Ren" and then I try to talk to him about Christian Science.

I say "Christian Scientists believe that G-d and Christ are the true source of healing..."

And it occurs to me as I talk that I'm really only bringing it up as a talking point. I have no faith. I am simply making friendly chatter.

“Mary Baker Eddy teaches that illness is human error. We are all born children of G-d whole and perfect.  As children of G-d, it is our right...”

As I talk, my inner-mind makes quiet judgements about my final departure.  I know humanity is just a blip in the earth’s long history but where does that leave me? My time is an insignificant blip in a blip.  And what about the times I have lived in?  The present time always seems the most relevant, but who knows. I look at the column and  think about the Egyptians who created it. Normally, when I look at ancient relics and consider  ancient cultures, I feel a little sorry for them - I feel a little superior to them, because I'm alive,  I'm alive in modern times, and you people from long ago, are clearly dead, and even when you were alive you didn't really have a clue. But as I talk to my park-bench friend, I feel less and less smug. 
I begin to see my own existence, a world with modern disease (a culture of staring into TV and computer screens) is certainly NOT superior to the ancient Egyptians, who  who memorized the stars in the sky.

I finish up. 

“When you think you're sick, it’s simply an illusion. Human error. See?”

My park bench friend nods uncertainly. There is a lull. 
It's clear I need to wind this down. 

So I switch topics and tell my friend that I'm looking forward to the weekend!
I plan on seeing the Picasso at the Met. The Met is open until nine on Friday, I tell him.

My friend looks disappointed and tells me he has to prepare for a small role in a film. He’s playing some sort of science fiction messenger, a futuristic Hermes. He has to wear all one color (or avoid certain colors) because the film is being shot in blue screen. His scene is being shot on Saturday morning. He regrets he'll miss the exhibit. 

(I worry he thinks we're friends now, friends in a "I'll call you and we'll make plans" kind of way).

My terrible disease forces intimacy.

But he abruptly looks at his watch, notices the time, and bicylces away.





Thursday, August 19, 2010

Central Park


Central Park
Originally uploaded by Charlie Roberts

Wednesday, August 18, 2010

Hudson River Park


Hudson River Park
Originally uploaded by Charlie Roberts

union Square NYC


union Square NYC
Originally uploaded by Charlie Roberts

Tuesday, August 17, 2010

UNION SQUARE

I take the van (available for the handicapped and elderly) to Union Square.
There is a little platform elevator that lifts you up into the truck, some moments of attention grabbing vulnerability,  and then the driver locks you down with chains and belts as you remain docile, powerless, accepting. Caged Animal.

It's quite an extravagant feeling because the van ride is only for you.

Tooling around Union Square, I feel somber and gritty.
(I'm back fellow New Yorkers and this is what happened to me!)

Sometimes New York, with its constant vying to be more civilized and trustworthy and grounded, can seem so slipshod.

Monday, August 16, 2010

ROMANTIC TAIL

He enters up center  through my front door (left ajar).
My apartment is feeling (more and more) like a stage set.

"Mister Roberts?"

"I'm over here by the plant!"

I want whoever it it to play out to the house.

He strides past Mary at the door, past the broken scooter, and down to me at the end of the room (near the foot of the stage).

He's been trying to reach me, he says,  he called twice this morning, he says.
"Is this your cell phone number?" he asks.

Oh.

This is today's visiting nurse, it dawns on me, and this going be good because Francisco (his name I later discover) has a thick European accent, bare muscular forearms, an athletic broad-shouldered frame, blue eyes, wide cheek bones, and a Prince Valiant ponytail.

He wears the "visiting nurses association" badge but the rest of him is more relaxed and urban than Miss Bessie was. Which leads me to conclude that Miss Bessie's girl scout uniform was self imposed. (We all like to dress up and play out our roles with costumes and props).

Francisco and I make small talk and grin at each other. I'm still bleary with coffee. The scene feels deliciously absurd - (Who are these strangers in my apartment, stirring oatmeal, shaking thermometers?)

We get down to the business of my bloated feet. In short, Francisco can find nothing wrong and is charmingly baffled as to why is he is here.

He grins, seductively looks me in the eyes and says,

"Pffttt! - there is nothing here. I don't know what they see but I see nothing."

I resist swooning a little mostly because when Francisco beams, his smile says, go ahead, swoon! everybody does, I enjoy it - so swoon!

I call Mary over and ask her to describe to Francisco what Miss Bessie had shown her. Mary and Francisco examine my feet like they're staring down a deep dark hole trying to make out if something's actually down there.

Mary passively points to a few places but looks uncommitted.

I look ahead of me at nothing, as if my feet had little interest to me but if they do for you, I'm willing to let them out.

"I see nothing"  Francisco repeats -  but he says he will return one more time, next week.

Before he goes, I can't help it, I gotta know where he's from.

Francisco releases the grin and says, "Brazil! But many people guess Sweden- the cheekbones. "
He's loving the attention.

Saturday, August 14, 2010

POTTED PALM

I fall out of my new hospital bed and land on the hard parquet floor.
I'm not hurt but I cant' move. It's clear to me that my progression is moving because I can't really even sit up or pull myself along the floor to get to a phone.

I have to get to the bathroom.

I have rolled under a very large potted palm leafed plant in a big fat terra cotta container.

There is my emergency button - hanging around my neck - a sexy pendant , a necklace.
But I don't want to use it because I don't want to experience what I know will be the ensuing drama.

I lie there. It's around eight in the morning. I make various attempt to save myself. I can't move.
I push the button.

Ten minutes later the ER crew is in my apartment, commenting on my nice view, playfully chastising me for not wearing  a seatbelt.

And I openly weep. Because I have no control and there are strangers surrounding me in my apartment at eight in the morning. Thirty minutes earlier I was dreaming about summer stock.

Wednesday, August 11, 2010

MARY

Mary is my new (and my first) health aide, and today was her first day.

Mary works hard and has a meek smile. 

When she listens to my orders, I suppress a grin because I enjoy playing out the role of Lord of the manor. I am so excited to have someone do things for me and ask me what they can do next!I can't believe my good fortune!

Mary's from Trinidad and so I'm looking forward to funky eggs and Trinidad fried rice and macaroni pie. (She suggested these as possibilities).

As we were folding laundry, she told me she prays G-d allows her to follow her purpose -  helping people. She talked about "land marking" which has something to do with connecting to as many people as possible.

"In a positive way, I assume?"

"Of course, yes."

"And what happens if G-d doesn't allow you to fulfill your purpose?"

And Mary's answer is the hub to which all questions like that are sent.

"Only He knows his reasons, only He knows why."

LAKE GEORGE "BLU" (2)

We elevator down to the new restaurant at the bottom of my building.

The restaurant is called "Blu",  that's blue without an "e".
"Blu" is the fourth go for a restaurant in this particular space. But Blu is more upscale than the others. You can tell it's classy because The "B" in Blu (on the sign and menus and matches) is artistic and inky and blotty. It's terrifically artisian and spontaneous. And the waiters at "Blu" have accents and toady about like the place is venerated.

Blu is mostly empty because it's really at the end of nowhere. The whole block at the end of west 42nd Street has been reinvented - with glittering highrises and fancy parks. But the area doesn't lure the kind of New Yorker who want to blow big money on fancy Steak and Formaggio e frutta . People around here are looking for burgers and fries before they ride the Circle Line or tour the Intrepid.

But the owners of "Blu" were smart to put tables outside. I pass these tables every day (in my wheelchair) and I often feel I should divert my path away from the one or two outside diners so that they won't have to take in the sick and disabled as I wheel by).

Tonight, the outside tables are tempting and I suggest them to Car but we forgo them (too noisy and windy) - "the light's no good," and pick a table inside.

Saturday, August 7, 2010

Lake George


Lake George
Originally uploaded by Charlie Roberts

Monday, August 2, 2010

Lake George


Lake George
Originally uploaded by Charlie Roberts