Nimbus

Charlie,

I should be mad that it snowed today but the snow in the trees looks so beautiful I can't be. your mother looks so young. she's beautiful. and you have on a cape cod sweatshirt -and goofy, and child like. where did all the years go?


Where do you get your aides from? it seems like ive gone through ten of them. as soon as I get them trained, they leave. is it me -:) yesterday was beautiful. I envisioned you sitting in the park by the water and was jealous. how I wish I lived in manhattan. when the weather gets warmer I'll start going over the Brooklyn bridge again.

- Blue

__________________________

Dear Blue Skies,

I called a strange agency in Brooklyn, last summer. Strange because I think their aides are people who can't get legal employment, illegal immigrants, etc. I never signed anything, they didn't ask me any questions, I gave them my address and Mary showed up. $12 an hour. We've become good friends. She confides in me about her troubled marriage , I gave her an unused iphone. Her nephew just started nights. It's good because as I've lost my speech, she's been here and can understand me better than anyone. When I get Medicaid, I'm hoping to keep her.

After the peg operation, medicare gave me additional aides. And just like with you, they would quit on me. Two men from Ghana (who were great!) A sour black woman who napped and talked on her cell phone (my mother described her as a thug) and two men from Russia. One from Uzbeckistan had such an inscrutable countennance -I texted the agency 'no thank you".

I'm sick of wheeling about my neighborhood but i make sure to get outside every day anyway, even in the cold, cold. Right now, getting outside is my only goal.

I AM WITH YOU ON THE TEDIUM OF THE FEEDINGS!

I can no longer speak words. But, I'm still somewhat idependent. On Thursday, I wheeled to Chelsea and got a haircut at the same barber I've been going to for years.

Oh. My new aide just noticed my haircut and tells me I'm angelic and glowing. Perhaps ALS has given me a nimbus of wholesomeness.

- peace and 60,

Charlie

October Central Park

park
Originally uploaded by Charlie Roberts

goodbye

goodbye
Originally uploaded by Charlie Roberts

My sister at the 40th Street Pier on the Hudson.

LANDS END

My brother walks through the open door of my apartment at the very end of west 42nd Street.

I am at the computer in the bedroom and I do not move to greet my brother. I stay in the bedroom, quiet and spent from by birthday. (It's not because of you Car, if you're reading this) - it's because wheeling about New York often leads to bone aching sleepiness. But once I am again back in my apartment, I rally by reestablishing my healthy denial (my outside voice is torn and weak, the voice in my head remains clarion and chatty - my flaccid legs and feet are simply temporarily indisposed). Alone, I forget all the healthy bodies clogging the city sidewalks reminding me of my terrible disease.

"knock, KNOCK!"

"Come on in," I wheeze. I can't make my voice loud anymore and I put this loss out of mind too. I have put all of my losses out of mind. (My lost muscles, my threadbare voice, are simply friendly, manageable symptoms).

My brother comes into my room and leans down with an awkward half- hug.  Stuck in my chair,  I am brittle and stand-offish (it's my breath! - once clean and sweet, now stinking from vanishing motor neurons, apparently).

"Do you mind if I hang up some things? I need to get some pants out for work. Am I sleeping in here?"

Out come bland, preppy clothes and spotless shoes (with shoe trees).

My whole family (accept for my mother) is crazy for tidy clothes, shiny shoes, the plain discreet watch. My family likes to talk about parkas and walking shoes, water proof gloves and winter boots (Patagonia, Lands End, Coleman) like they're busy travelers, manic outdoor enthusiasts, which they are not. I listen up during these outdoor gear talks. I make mental notes. I kind of get it, but everything I own and wear turns baggy and frayed; new shoes become a loopy mess. I will eventually lose the tasteful watch and the nifty keychain flashlight from Orvis.

I watch my brother unpack.  He is in simple business attire, meticulous and lint free (later in the weekend he will get salad oil on a sleeve and remark that it's time to replace this buttondown - something that would never occur to me, a little stain taking a shirt out of circulation).

"Are you ready for some wild, fun with your lame, disabled, little brother?" I ask.

My brother lets go an open, boyish laugh, and he is as handsome as he was as a teenager. (I tried to copy that laugh growing up).

I don't smile back - ever so withholding - punishing him for his good health.

"Shall we walk out to the river?" I ask.

"Sure!"

But before we make it out the door,  Jackie (my seventy two year old neighbor) walks in.

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