New Yorker

New Yorker
Originally uploaded by Charlie Roberts

“On the threshold of love we are bashful,” Proust noted. “There has to be someone who will say to us, ‘Here is what you may love: love it.’ ”

Flea Market 39th Street NYC

Flee Market 39th Street NYC
Originally uploaded by Charlie Roberts

flea market

flea market
Originally uploaded by Charlie Roberts

WEST OF TENTH

My sister and I say goodbye to my brother at the ferry dock on the Hudson River and West 40th Street.


When my family says goodbye, we stare at our shoes and watches. Someone might snap a picture (of a bird or a train, never a group shot). We kill time and linger (by the car or train or bus) in somber silence. 

When it's time to go, there's the awkward embrace, the required "I'll see you at Christmas or in the Spring". Often, the one leaving will sound their car horn - a jolly, disowning "honk! honk!" But after that (after they are really gone) the remaining family will glare at the empty void where the car or train had been and wallow in the melancholy maw - restraining (just enough) to repress feelings of abandonment and loneliness.

This ritual came about by my father's taciturn ambivalence toward his children. He wanted us to go, but when the time came, it was too painful for him to have us actually leave. And so he would simply give in to the dismal walk to the car, the quiet sadness would begin; all nasty remarks and rebukes forgotten, and my father's pained look was solid evidence that although he was made irate by our politics, he couldn't bear to be without us.

But when Car leaves my apartment on Monday morning, she slips out like she'll be back in fifteen with milk for coffee. This is a relief (to me) but also kind of a cheat.

We've spent the past 36 hours, mostly in my apartment, at the very far end of West 42nd Street (not exactly Hell Kitchen, not exactly Clinton - what is it? West of Tenth, WOT). We have wandered at twilight down the Hudson River Park and had dinner at Chelsea Piers.
The next morning we had coffee and cupcakes at the Cupcake Cafe on Ninth Avenue for my birthday. 

At the Cupcake, Car reads through early blog entries trying to help me visualize  another form for the blog. A book? A memoir? A very long letter?

She jots this down on a computer post-it note,


________

different beginning -- ease into it -- can you go back in time a little? Dont' write it yet -- I want to read through the whole thing to get a feel for how it should open 

________________

I tell Car, "Maybe I could find some old emails!"

"That's a great idea!"

I do a search of my yahoo  emails from two years ago and find these.

_______________

I did a reading yesterday and the head of the theater (who I did not know) came up to me and started introducing me to the audience saying ,,, isn't he wonderful? Felt good.

I've been down to the wire on a few big spots.
But, I've had a terrible cold all week. AND there could be something seriously wrong with me and I do not say this lightly. BUT. I had blood tests and nothing showed up. I've been having problems with my walking, the "gait" of my walk feels weird. I cramp everywhere. My feet and legs feel like I ran a marathon, yesterday. I'm unsteady and I have fallen over a lot!
I have little tiny muscle spasms all over my body ... like little ripples on calm water. My toes move on their own. IT is WEIRD. I made an appointment to see the DR again. My hip joints ache. I have NO flexibility below the waist. I WAS tested for arthritis. Nothing showed up.
 It seems manageable now. It could be just aging big time in a big chunk ... punishment for my marathons and bad shoes.

But. I have a little fire in me right now. So all is swell.

See you later-

Charlie

________________________

and this

______________________

Guess what.

It IS serious.
I'm having more blood tests and emg's Wednesday.

I took a train out to my sister's to get some comfort.

The doctor was grave. 
He told me more than once that this is very serious.

The fact that it is bilateral is bad news.
He was going to list a bunch of diseases but I told him that I couldn't take it all in.

So I'm back to square one.


Charlie

__________________

After the Cupcake we buy a large yellow vintage distressed (way too distressed I realize when we get it home) chest of drawers at the 39th Street Flea Market.  


After dinner, we go to a movie in the village, "Life During Wartime" which Car hated and I disliked. 


Before she leaves the next morning, we rig a rope to the end of my bed because I'm finding it harder and harder to sit up. Car goes to a hardware store and comes back with an array of fixings; rope, a metal loop, bungee chords, gaffers tape.  Car looks for sailor's knots online. Do I know any? she asks. I should. I'm supposed to be a sailor but nothing remains in my head.

Car leaves. Forty minutes later, my brother arrives.

the cupcake

the cupake
Originally uploaded by Charlie Roberts

DELIVERY

It's the day before my birthday.

It's three in the afternoon and I sit naked in my wheel chair. (When I'm alone, it takes hours to complete the morning rituals).

I have eaten brunch, taken an army of anti-oxidants, and read the paper. Here I sit, all wiry flesh, in my bathroom, hovering over the sink. (The day must begin at five).

I attempt to floss. (I can't floss everywhere because fingers on my right hand can no longer hold the floss tight).

I shampoo. (I pour cups of water over my head and lather up).

I brush my teeth. (I scrub away, my elbows resting on the sink counter).

I wash. (I use a  hand towel and soapy water to clean my body and vaguely recall Pedro Almovodar's "Talk to Her" - the methodical, almost religious ritual of washing the beautiful woman in the coma, her  torso, a gorgeous sleepy stone sculpture. (This is how I choose to picture my owninert limbs. I will take care of them until they wake up).

Scrub. Wipe. The cloth returns into the soapy water. I lean over - no longer able to sit up.

I wash in the dark.

"Hello!?"

There is a stranger in the apartment. My front door is ajar, as always. I'm not alarmed. My nervous system normally susceptible to creeping adrenaline, is spent. There is no more. So I continue.

"Who is it?" I manage in low volume.

"Charlie Roberts?"

"Yes."

"I have flowers for you."

I grab a towel and cover my exposed lap.

"Come in. I'm in the bathroom."

My life is a pale farce. Attendants enter (stage; up center) to deliver, clean, massage, heal, feed. All the little scenes seem the same. All follow the same easy script, ernest introductions, simple instructions, followed by my tired, flat, response. (You're here to help. I'm a pampered movie star. Do what you must).

"I'm in the bathroom. It's okay. I'm covered. You can put the flowers down in the kitchen."

The delivery person ducks her head in.

"Oh. Sorry!"

"It's okay. Put them anywhere."

I go back to my Pedro Almodovar scene and hear the sound of cellophane in the next room.

"Is it your birthday?"

"Yes."

"I can see. There's a balloon!"

(Must be from my mother, still clinging to paper table-cloths, snoopy sheets, mylar balloons).

I wait for the delivery person to leave. I wait for the sound of the door catching on the little hinge it keeps  ajar.

I wait in silence.  (Are they robbing me?)

"Hello?"

"Yes, I just need you to sign."

"Oh. Come back in. I'm covered. Come in."

A healthy woman, cropped hair, middle aged. Good energy. Intelligent. She picked this job on some career dare. "I love flowers. I love walking the city. I love  people. I'll quit my job in corporate accounting and deliver flowers."

"I need you to sign here."

I grasp the clipboard and begin the challenge of creating a signature, something that gets harder and harder.

"May I turn on the light for you?"

"Sure."

The light clicks on and we are side by side in my intimate bathroom, me mostly nude. We're strangers facing my bathroom mirror in the bright light.

IN THE MORNING

I wake up, alone.

Because it's (less and less) clear to me if I'm capable of taking care of myself (if it's prudent) - there ARE unseen dangers; using the bathroom, boiling water, pulling up my pants... swallowing water. Everything I do requires focus and patience. I put up signs around the apartment that say, "CHARLIE, TAKE AS MUCH TIME AS YOU NEED".

So today, after days with my mom at sea, and a week with with my aide, Mary, I wake up alone feeling vaguely exhilarated.

(I guess I'm a loner).

I'm in the living room in the new hospital bed (stiff, homely with noisy motor) -my old bed, (antique, capacious and untouched in the next room).

I wheel into the bedroom to dress and stop to stare at the bed. The bed is a prize. High and wooden with clean deco lines, I covered it in a white, chenille, Martha Washington bedspread I bought from Bates Bed Spreads of Maine, on Ebay.

I have new respect for the bed.  The bed seems smug and confident. The bed seems to say, I'm fine, I'm better off without you. The bed has moved on.

But this morning, I wake up in the practical, hard, hospital bed in the living room. I wake up chilled because I can't get under the covers. It's physically impossible (for me).

When I get into the bed at night, my sheet and blanket are folded up at the top of the bed by my pillow.
I use the remote to make the bed sit me up and then unfurl the sheet and blanket toward my feet. I can never get it to cover my legs. But I have a talent for sleep so even though I'm cold and lie awkwardly constricted  with my arms wrapped around the metals side gates of the bed (it's a single, I'm used to a double), I'm able to sleep, deeply.

When I wake up, I find the remote. push a button and the top of the bed lifts me up.
I push my useless legs over the side. I grab the arm of the wheelchair. I sit up.
My upper body is unstable (like I'm being tossed around in the back of a truck).
But once I am right and still, I find the sliding board and put one end under my butt and the other end on the wheel chair and slowly glide into the chair.

As I slide into the wheelchair, I hear morning traffic on 42nd Street. The gentle morning roar comforts me. I know who and where I am.

I hear a dog yelping. I hear the exhaustive gunning and breaking of the M42 at the bus stop on the corner.  I hear the Falun Gong protesting the Chinese Embassy across the street. There is one last square of morning sunlight in the corner of the room, the last of the summer sun.

Looking out my window, I can see the color of the the city is changing; more black, more contrast, more saturation. The cool air warns, "Be industrious, Embrace ambition, Make a list".

And so I do.

Brooklyn

Brooklyn
Originally uploaded by Charlie Roberts

PILGRIM

The boat is monster huge.

As we pull up to Pier 12 in Brooklyn in the "Access A Ride" van,  my mother points up to our cabin like she's pointing to a constellation in the sky.

"We're on deck eight, all the way past the life boats on the right side, unobstructed view. There! That's our room. See? We have our own little balcony!"

I look up high, as high as a city building, past cargo rigging, past rescue boats, past swimming pools and try to make out the area my mother indicates. I scrutinize the white ship but can make no mental picture of the innards in which I am about to be swallowed up. (Like when my parents pointed to my first college dorm from our brown Volvo station wagon, I stare cluelessly, my ability to visualize beyond the aloof facade is wholly absent.

I didn't look at the brochure or website. I haven't mentally prepared for this voyage. My sister recently asked if I was excited to go and I told her I really hadn't thought about it.  My doctor encouraged me to go. I was told it would be good to travel, NOW. "I took that same exact cruise last summer" he told me during my last clinic visit. "You'll have a wonderful time. Never slept so well in my life... the gentle rocking of the boat."

So the cruise seems like a done deal, a ritual required of my clan, an end of life obligation.

(I have photographs (black and white and shiny) of my grandparents posing on decks for cruises to Hawaii and London. They look austere and real in the photographs. They've made it onto the happy boat but they're old and tired.

And it seems having your picture taken is a cruise ship requirement, like sipping champaign as you disembark. As we approache the gang plank, my mother and I both in tired, heedless mode, slip past the ship's photographer.  Mom, however, takes a step back and asks if we HAVE to have our portraits taken - like a responsible kid on a field trip.

"Mo -THER! Let's GO! - he doesn't care!"

And I wheel away from her, irritable and old man-ish.

This characterizes my behavior for most of the trip.

Because I've done none of the planning, because I've no concept of what to expect, and because I have less and less control of my limbs, my ability to speak, to eat, I am short tempered and humorless.

Once settled in our fancy stateroom, it dawns on me - (not in words or thoughts, but through an innate sense of survival) I will need to stay keenly aware of my every move or something terrible could happen to me.  It's that feeling I had as a young teenager, when I went off in a car, to a house, with a group of kids I knew I shouldn't be with, out of my safety zone, there is no turning back -nothing to do but doff a tight smile.

I decline the complimentary champaign left on our single coffee table - if I topple off my chair, how will my eighty-one year old mother ever get me off the floor? Why did I not think of this!!

My mother mixing her required vodka and ice, is impervious to my stints of fear, anger or trenchant instruction; something I both loathe and adore about her.

I hang onto the arms of the chair. My mother sips her vodka. The boat sways.

New Canaan 1960's

Indian Guides
Originally uploaded by Charlie Roberts

Indian Guides

CLINIC (1)

I have my ALS clinic visit today.

Every three months I go to Beth Israel Hospital (in the past it's been Columbia Presbyterian and John Hopkins) and check in for a half day visit to be probed and inspected by a team of medical pundits. (None of these experts can save me).

"We just want you to be as comfortable as possible for the end."

(This is what the assertive, young, male, Asian, physical therapist explained to me today).

And so this morning, I prepare for the quarterly event with a big breakfast cooked by Mary; eggs, turkey bacon, toast, steamed kale, fresh squeezed orange juice, and freshly juiced celery, carrots, and spinach.
Mary takes my food requests like an enthusiastic short order cook: she relishes a demanding customer.

After breakfast I dress.

I choose a loud crayon red checkered button down. Preppy. My father's. County gentleman chic. Very "go to hell".  Mary has to get it from the top hanger for me. When she  asks what pants I'll be wearing - I'm ready for my driver to appear with top coat and gloves.

I'm ready. It's time to go.

My sister arrives energetic and lithe (in that family body I once shared) and I give final instructions to Mary like I'm the landed gentry of Litchfield.

"Mary. They're coming for the scooter, sign for me (please) and get the receipt. Bring my shirts to the cleaners downstairs. Prepare the casserole  for tonight, make the bed, and if you have time, could you bake that non-gluten banana bread?  I'll be gone the whole day, so just shut the door behind you. And keep a record of your hours."

My sister and I clamor onto the cold and hallow "Access A Ride" van downstairs on West 42nd Street. My sister takes a seat beside me as I'm locked into the floor with my chair. I stare ahead during the chaining; lost, pensive, removed. A dog unaware it's being crated.

We ramble through the sunny city and pick up other frail types. An old man on West 48th, a small Hispanic lady on East 52nd.

In the noisy cold of the tin van, my sister and I watch the revamped city glide by.

"There's my first apartment on 19th Street!"

"There's where I had my first apprenticeship through NYU!"

"And there's the Cinema Cafe! Did you ever go there with me? The Cinema Cafe?"

This usually evolves into a despairing conversation about lost real estate opportunities, a favorite topic of ours. My sister is forlorn over getting back to Brooklyn. Brooklyn is where she felt she could be her true self.

I tell her to sell her house in Connecticut and look around all the boroughs. Surely Park Slope (her home of ten years way back in the early eighties) is not the only place in Brooklyn she could live. She says she is considering many places around the city but adds woefully she misses Park Slope and pulls out the book,

"Life Would Be Perfect If I Lived in that House".

"That's a good book" I say. "And it really puts into perspective the insanity of house lust."

We finally make it to Union Square by way of the FDR, East Houston and Bowery.
It's taken us an hour and a half.

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.

West Side Highway

West Side Highway
Originally uploaded by Charlie Roberts

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.