ROAD KILL

I've been reading plays.

After baking chicken and zucchini in a white fluted pyrex casserole dish, I text Jackie and ask her to take it out of the oven for me, and put it on a plate, because that part is the most tiresome.

Jackie comes over, gathers the oven mitts, squints and holds her breath as she opens the oven.
(Jackie never uses her own oven).

I wait in my chair, calling out instructions but Jackie gets lost in a story about going out to dinner to an Italian restaurant in the West Village, Her son-in-law paid for a lavish group dinner.

"Must have cost $400!" Jackie says.

Jackie gets so carried away with the details of the dinner that she loses purpose and I am left, hungry and teased waiting for her to serve it up.

After dinner, I sit in the park outside my building on the very most west end of 42nd Street and read a play by Tracy Letts.

And after reading for some time, I check for an email (on my iPhone) from Blue Skies. She'd emailed earlier to ask how I liked my new doctor at Beth Israel compared to Mitzumoto at Columbia.

Recalling what I wrote to Blue Skies, worrying that I upset her (she works with Mitzumoto and loves him)  and  then recalling that final meeting with the Japanese doctor, I get into a rage all over again.
I wheel-chair back inside (lost in my head to the echos of our final confrontation).

Once inside the cool marbled lobby, I decide to read.

I choose a spot near the mail room.

Tenants come and go. Almost everyone calls out to Spiro, (our tireless doorman).

And then, two young women in summer dresses with lovely hair and makeup, approach.  And as they approach, they beam, in fact, they smile so openly and sweetly, I think, "my gosh, I MUST know them, otherwise their intimate smiles would be impertinent or plain crazy".

So, I lightly nod back at them, hoping they'll enlighten me and say, we met you through Jackie, or we live down the hall, or we know you through theatre - we go to NYU.

But the first one just beams, and the second one cozies up to me and points to my lap.

"I love that!" she chirps. She's in love with herself and her sunny, confidant pluck.

I look down.

"The play?" I mumble.

"Your chair! What you're sitting in! That looks like a lot of fun! I want one of those! "
(She may as well have winked and stuffed a dollar in my hand).

I can't retort. My voice is too weak.

And the ladies bustle off, high on life (no doubt) for taking time to boost the lame and disempowered.

Left for emotional road kill, I think, "Was she drunk?  No,  (I realize) she's clueless.
________________

I met with my cranial sacral therapist this afternoon.
After our session, he said he noticed anger in my body.

hudson

hudson
Originally uploaded by Charlie Roberts

grass
Originally uploaded by Charlie Roberts

BLUE

Hey Blue Skies,

I'm okay. I feel better today because it's cooler and rainy. Air conditioning gets to me.

How am I doing (ALS-wise)?

My speech is getting noticeably worse. My right arm is weaker than my left. I fell asleep on a magazine (a month ago) and I have a sore spot on my back that will not go away. Odd.

It's getting harder to do stuff. Putting pants on (a trial). Getting into bed (many stages to get myself there).

I've been on this big vitamin therapy (self prescribed - guess work), and some suggestions from a naturopath, but lately I've given up on it.

I guess I'm down-ish. Not terrible.

You know, I crawled into a bubble of my own making and I think it keeps me in drowsy denial.

Still, I've been short with people. A little.

______

I like Beth Israel. They are a little more together in terms of therapists and contacting me. The visits are smoother. And its a breeze for me to get there. The clinic is on Union Square. I like the doctor. McGowan. An Irishman in natty clothes. Kind and funny, but dismisses anything alternative. I told him about the naturopath and he had no real interest in the naturopath's suggestions, he simply asked me how much he charged. But I don't think he's up on things. I have this sense that all neurologists have given up.

I told him at my last visit, that ALS clinics need one more person to come through the room. This person would specialize in good news about research. This person would explain the possibilities out there for a break through. And each time you came for your visit, this person would have updates.

___________

I read about RNA in my book "Stem Cells for Dummies". That makes sense to me. I'd have to look at that book. The RNA gives the orders, right?

I want to understand it all. But I still can't bring myself to spend too much time doing research or even following the threads on PLM.

My brain (small and easily tired and distracted) has only so much room for daily focus. These days, I'm cursing myself for not being more well traveled or read. I can't write the way I would like to.

And I think I've been frustrated in life. And now I ruminate daily, trying to figure out how I could have had less frustration and more ecstasy? enlightenment? self acceptance? exploration of my potential?

I may try something serious. Monterrey? A more committed approach to therapies here in the city.

I've had my head in the hole again. Between dressing and eating, the days seem to get away from me.

Right now, I need to redo my apt for wheelchair.
And I'm trying to get away in August. But how? with my new borrowed electric wheel chair? It's too heavy to lift.

Sorry I went on so long.

I have an idea for a PSA. 

Yours,

CHARLIE_ROBERTS

COUCHING BRAD

Brad is my PT or physical therapist (temporarily).

Beth Israel prescribed him to me because a PT often comes with home health aides. If you need a home PT, it's likely you'll need someone to cook and clean for you.

At our first meeting, Brad asked me a series of questions, tapped my answers into a thick, computer notebook (like the kind a FED EX guy would use) and within seconds told me I had been denied a home health aide.

But I still see Brad.

Brad is my age, and looks kind of like me (only slightly heavier). Five foot seven, a hundred seventy pounds, curly brown hair and slightly epicene.

Through our sessions, I've learned that Brad made the move to become a PT in his thirties. (He was in publishing, PR, acting?) Brad maintains a professional taciturn countenance.

Yet it's easy to detect a certain malaise. Brad has a slight exasperated look, (the semi circles around the sides of the eyes, the nervous hesitation) of a man who is not exactly sure what he got himself into. Apparently it takes years to become a PT. Much of what Brad and I do on his forty minute is paper shuffle.

Brad takes my pulse, my blood pressure, my temperature.
He asks me if I'm in pain.  He inputs all of this into the notebook machine.

When I describe to him my former (very physical) life, Brad shakes his head and wallows in my disaster for some time and then says "it's not fair."

He walks me to the bedroom, lifts my legs onto the bed and we run through a series of exercises that would be appalling easy for almost anyone else.  But I huff and puff and (concentrate).

He holds my feet down and I lift my head towards my feet. I turn my head slowly to the right and then to the left.  I attempt to raise my hips in the air.  Brad sits me up and I hold on arm up and then the other. (This is exhausting).

We then go back to the living room to take my blood pressure again and fill out more forms.
I bank these receipts in white boxes I never look at.

I watch Brad pack up. He's slow and sad, like we just had a fight and there's nothing more to say but follow through with the inevitable physical act of leaving.

Brad I imagine, if I think hard about it, is disturbed by my illness. I imagine that I rate a few phone conversations with friends.

"You should see this guy"Brad might say relieved that his own ample body is in marvelous working shape) "it's such a tragedy. And he looks so young, He's getting worse and what am I supposed to do with him? Sometimes this job is too demanding, emotionally."

And because I envision these private conversations, I am distant with him.

But today, before he goes, I ask him if he has ever bought a couch.

Brad pauses and I can tell I've hit something.

"I saved for months" he opens up. " I really wanted something different and I didn't want anything fussy. I bought it from a store on Park and 26th. They're not there anymore. I have a small one bedroom on Westend and 95th. The couch is low and clean and Italian. I've had it for years and I still really like it."

I think about Brad patiently saving his money and choosing the perfect couch. I picture the day it was delivered. Friends coming over to approve of his efforts. Brad being exacting and careful not to spill.
Brad is man who has patiently compromised. You can see it in his face.

And I also wonder what the meaning of the sofa purchase is (beyond the its purpose for resting). Buying a couch is a seminal life event, in the same world as changing careers, or moving. It's declarative and grown up. You're marking yourself.

I've never bought a couch.

elevator

REAR WINDOW

I'm tired.

My legs and feet throb. My breath comes quick. My nostrils are cold. I have a head ache. My right arm is going. It's hard to speak, and when I do, it comes out wrong - fragile, old, dithering. My feet are bloated. I have a spot on my back that feels terribly sun burned but it's not a sunburn. I don't want to eat. I want to lie down  but I can no longer get up from a chair or the sofa. I spit up. I bathe infrequently. I'm having trouble concentrating. Getting in and out of the wheelchair, putting on pants, getting in and out of bed, making coffee, making food, all of these activities tire me. I must sit still and stare and ruminate (often). I avoid the phone, hearing myself speak into the phone, the clarity of what I have lost, (do I dare plan practically for what I will lose? No. I need to get to the next task) - is diminishing.

There are so many things to do! But I gotta get outside. So, I scooter to the Hudson River.
To get to the river, I elevator down to the lobby.

My expression is dour. I lean my face to my lap.
Countless residents attempt cheerful conversation as we lower to the lobby.

"I like your hat", or "cool scooter", or

last week as I attempted backing out of the elevator - banging into its sides - a cheerful stranger offers, "Come on! You can do it! I KNOW you can do it!"

To which I bitterly reply (in my garbled slow, stymied voice)

"Mam! I just got the wheelchair today. I'm figuring it out.  CAN WE RELAX!?"

This silenced her into gazing solemnly. (No sweet, dear handicap here).

I wait behind glass doors for someone to open them so I  that I can then scoot into the main lobby.

Spiro (my staggeringly capable) doorman, races to the front doors to open them for me, often tackling do-gooders away from the door so that he can take his rightful place.

Spiro speaks unskilled English. I am barely understood. Our conversations go like this,

"How you today, my friend, Charlie?"

"good, feels good to be outside"

"Ess too hot for us. Ees no gudt. There are so pared down for us the work. So few of us. In America, they want us to wear this heavy suit and eets no gudt for de warmer seasons."

"They should give you a summer suit. Linen. Or just polo shirts!"

"What? What? Ees no gudt. No. They say no hats. That is all! Feel gudt and have a wonderful day, Charlie."

And at this point, Spiro always pats me on my heart. The stroke to the chest is Spiro's signature.

Outside, I scoot past tourists. A woman (I do not know) yells out from an outdoor cafe, "hey Charlie!"
I don't recognize her. I am either infamous or losing my memory.

I mouth, but don't say, a lame, meek, handicapped, "Hello" and continue on my way.

On the very end of Pier 84, I close my eyes and imagine that I'm sailing the Hudson in my own schooner. I read, "The Leaves of Grass". I attempt notes for a play. I play "Angry Birds" on my i-phone.

____________

At night, after dinner, I again scoot down to the park outside my building.

It's really great. It's very communal (in a cold and distant, city-ish, way). It reminds of Hitchcock's
"Rear Window".  All of the unknowable tenants on display, reading, eating, playing ball, gossiping.

Tonight, I watch "The Fugitive Kind" on my laptop, a film based on Tennessee Williams' play "Orpheus Descending". It stars Marlon Brando and Anna Magnani (was there ever a more unlikely Hollywood movie star than Anna Magnani?)  Brando is so cocksure of himself, so deeply channeled to his odd choices, (and still so very handsome) -  it's jaw dropping to behold,  all most crossing the line to rubber necking- gaping at a crime scene.

As I pack up my laptop to go back up to the ninth floor, I notice three people pointing above me, high up (like at the moon).

And next,  I see a small foreign woman (most of my neighbors are from other countries) - I see a small foreign woman with a summer wrap and bed slippers, complaining to a night door man.

"But thees is terrible! I can't sleep like thees. How do expect me to sleep?"

And she (like the others) points high above.

And, I notice that the enormous new high rise (twin to mine) - this 70 story comlex has spot lights hitting it from my the top of my 50 story building. Gigantic flood lights. Someone hit the wrong switch and this goliath condominium high-rise is bathed in blinding white light.

The scene struck me as so modern.

The small woman in slippers standing in the grass, simply wants her neighbor to turn off their lights so she can get some sleep.

dusk

dusk
Originally uploaded by Charlie Roberts

TOY STORY

A dinner plate with a salmon burger on it,

slides out of the open refrigerator, tumbles to the floor, and shatters into five or six jagged shapes.

I stop and consider the mess.

I am stuck. I can't just roll over it (on my new borrowed wheel chair)...
so I call Jackie.

"Jackie, I've had a SMALL little disaster... I broke something, can you come over?"

(I emphasize "small" to make sure she understands this episode won't be a three hour ordeal - like last week when I fell in the bathroom toilet and Jackie wandered around the building looking for someone strong enough to lift me out of it).

"Alright, I'll be right ovah."

Jackie sounds drowsy and hesitant. "Sixty Minutes" is on in the background. It's dinnertime.

As I wait for Jackie, I stare at the broken pieces, the sludge of salmon, on the dirty tile floor.

Above an oily crescent shard, near the doorway,  I fixate on a dirty string (of something); a rotting remnant of spinach or kale? No. It's a gold chain with a pearl. It's Jackie's. She's been missing it for days.

"It's a sign!" Jackie says. "What does it mean, Charlie? This plate was meant to be broken. Everything happens for a reason."

But I'm not able to join in her mystical enthusiasm. I feel weak. I'm hungry. It's difficult to talk. (I'm losing my strength to talk). Jackie requires answers but all I offer are lopsided smiles and and weak nods.  Jackie is carried away by her own charisma so it doesn't seem to bother her.

After Jackie exits, and after I swallow some food, I decide to go to the movies. "Toy Story 3" has rave reviews. I'll wheelchair to 42nd and Eighth for the ten o'clock showing. I buckle the safety belt and begin my sojourn.

As I wheel away from the Hudson east to Time Square, the city becomes sinister.

There's something not right about 42nd Street. It doesn't know what it's supposed to be (anymore).
I wheel past spectacular brand-new (unlit and empty) skyscrapers (condos!) which meet filthy, savage sidewalks, past shady people and the smells of frying pork, the hum of endless air conditioners.

It occurs to me that that whir at night is synonymous (for me) with summer in the city. And this sound is relatively new. That enormous professional roar didn't begin (I would guess) until the seventies. What was the sound of summer in New York in the sixties or fifties?

Wheeling across forty-second street, I sense hundreds of displaced and unhappy ghosts.

_________________

At the theatre, I wait outside. I wait until someone is kind enough to open the doors. Two sets.
I buy a ticket from a machine. I take an elevator to the fifth floor.

"Toy Story Three" doesn't make me tear up. What got to me was darker.
The toys hold hands as they face certain death in a city dump incinerator.

This scene felt brutal. I guess kids and their parent's understand, they expect, that the toys will be rescued, somehow. And of course, they were. But to me, the conventions for expectations (that everything will be okay) have been quietly altered.

I thought, "well this is it for the toys, it's a terrible way to go, but you got to go sometime". Somehow I forgot that they would (of course) be rescued.

leaves

leaves
Originally uploaded by Charlie Roberts

hudson

hudson
Originally uploaded by Charlie Roberts

PEPPER

Jackie is at the sink doing dishes.

I'm fully naked on my new wheelchair (recently borrowed from the local ALS chapter) - a red throw pillow on my lap. The borrowed wheelchair has a joystick on it's left arm. This reactive devise allows me to race forward and backwards on the bare parquet floors without intention. I am an unfocused boy.
By holding the joystick down to a hard left, I spin elegant and mindless three hundred and sixty degrees.

Jackie is saying,

"I think I upset Pepper." Jackie is working her extreme anguish expressions.  "I told Pepper that my daughter didn't want to be alone with Eddie (Jackie's brother, Pepper's husband) because she's afraid that Eddie will get violent. See Charlie, we know this other man that has Alzheimer's, just like Eddie's, and this other man with Alzheimer's, woke up one morning - this is RECENT Charlie, this other other man woke up one morning and said, 'Who are you?' and beat his wife, Charlie! So now my daughter is afraid to be alone with my brother - because of the Alzheimer's!" And when Jackie says this last phrase, she slows it down and pitches it up, like a polished Dramatic Soprano finishing off a tragic aria.

I spin in my electric chair. I go back and forth on the banal parquet floor. Jackie entertains me. Don't get me wrong, I respect Jackie, but she can often soothe as a TV would, only this TV allows for a dialectic.

"What did she say Jackie, when you told her that?"

"Charlie" she whipers, " I don't think she liked it, because she got real quiet and said she had to get off the phone, and Pepper's not like that, Charlie. And now I feel tear- rib - bull."

I stop my puerile maneuvering and consider Jackie's situation. Jackie focuses on the dishes.

After a six count I say, " Jackie, you need to be generous, and kind, and patient, and very, very brave."

"Charlie, I am kind. I go over there. I sit in that studio apartment on Barrow they've lived in for the past forty years. I go and sometimes Pepper goes out for food. But Charlie it's scary! He jumps back and forth from the present to past. And what if he starts in on me? What if he starts lecturing for my youth. I was different forty years, Charlie, but Eddie forgets that."

"Let him say what he wants Jackie, he can't get to you. You're clearly not that person anymore."

"But why must the past always be drudged up? Why can't I get away from my past? I know I did some bad things, but why must I always be forced to look at it. What is G-d doing? What is G-d up to? I just don't know Charlie, but I can't take it."

Jackie (once again) channels Blanche Dubois. She's in pain, but her love for "Street Car" is coloring her delivery.

"Jackie, if you feel bad about Pepper, call her up. Tell her how much you love and appreciate her taking care of your brother. Tell her how lucky you are to have such a good sister in law."

Jackie takes my counsel like I'm the Dalai Lama or Doctor Phil, all wide eyed and still.
(I feel like a faker - I can dish it out but I can't take it).

_______________

Jackie and I scoot around my apartment making plans for it's new no-nonsense design. I show her pictures on the web of the the ten foot long desk I'll buy. Jackie is big on not owning a thing. She recommends I get rid of the scooter, "you have a wheel chair, do you need both?" and my homely breathing machine, "do you ever use that thing? Get rid of it, you don't need it."

But in the midst of our happy planning, Jackie stops short.

"I gotta go Charlie, I gotta call Pepper."

12th avenue

12th avenue
Originally uploaded by Charlie Roberts

empire

empire
Originally uploaded by Charlie Roberts