JOHN MCCAIN (PART 2)

It's Memorial Day weekend and I'm alone. No plans. But I can sense that delicious weekend opener to Summer. 42nd Street is packed with patriotic revelers on their family ways to the "Intrepid" and it's adjunct attractions: spy planes, helicopters, a submarine, outside beer joints, bicycle rentals.

The Friday morning before Memorial Day, I text Jackie (my 72 year old neighbor) and ask her to look under the bed at Aroo.

"He hasn't left his little nest all week."

"He's not coming out? Usually he comes out when he hears my voice."

"Well, pull him out Jackie. Drag him out ! I want to see what he looks like."

Jackie gets down on hands and knees with vigor and strength. I  marvel at her sprightliness.

She pulls him out by the nape of his neck, "the way the mother cat does it" she explains.

Aroo emerges blinking and inert.

He looks out of it.

Jackie brushes him with his favored pink brush and I standby with his cat-dancer.

I bob it in front of him, flaccidly. It entices one or two looks but nothing like his usual obsession.
Aroo looks baffled and wasted, like he's coming off a long, jagged binge.

Jackie and I deflate.

"This cat!" Jackie proclaims, "This cat has been tortured and cornered with strangers shoving things down his mouth. This cat has been forced into a cage and dragged to strange and cold places. The examining room at that vet in Chelsea is in a basement! A basement! No windows and no telling what other caged dying animals were down there." 

Jackie is really getting on her high horse and when she does there is nothing to do but let her go and look down with shame.

"But Jackie-"

"No Charlie, He's had enough! No mo-ah treatments! No MO-AH! He wants to be left alone. He's tired of being tortured. YES! TORTURED! Charlie don't let them torture Aroo anymore. He's had enough. He's been through the worst kind of tortures. He and John McCain. Both of them caged and tortured. It's terrible. Really terrible. John McCain and Aroo."

This is too much for me. Jackie (once again) shatters my solemn groove.

"Did you just group Aroo with John McCain?"

"Yes I did! You're laughing Charlie. But think about it, it's true. It is!"

I'm covering my mouth from laughing too hard.

"Well, at least I made you laugh. But Charlie, I'm telling you, no mo-ah treatments for that cat. He's done. 

DONE!!!"

AROO, A NEW ARC (PART 1)

My sister says,

 "when a cat purrs, it's not only an expression of contentment, but a method for self-healing".

Aroo, the cat (plucked from the streets of New York), 

Aroo, my charge (the only pet I've had as an adult), 

Aroo, my roommate (the darling of all who enter apartment 916), lies beneath my bed, dying.

Sometimes he purrs, a few times he moans, 

(moans I've never heard him make before, moans apparently reserved for just these final moments) 

but mostly Aroo is stoic, silent. 

I sit on my scooter, stuck at the entrance to my bedroom, helpless and cutoff from the cat. I can't get down to him and he won't come up for me. 

"Aroo" I call emphatically

. "A- ROO!"

But he won't be lured. It's like he's in heat and doesn't want to be bothered.

"Cats die not unlike the way they give birth, it's private and exclusive...  dictated by a mysterious calling privy only to them" my sister (also) later tells me.

And so I stare at the black under the bed, trying to comprehend my cat giving birth to his death.
The cat, seemingly preprogrammed for his death, is simply following preset orders, orders that don't include me. Stuck on my scooter, lonely and abandoned, I'm a little mad. 

blocked

blocked
Originally uploaded by Charlie Roberts

Tragedy

Tragedy
Originally uploaded by Charlie Roberts

Cupcake Cafe

Cupcake Cafe
Originally uploaded by Charlie Roberts

PEP

Blue Skies-

Hope it's okay to give you my pep talk.

I have my doctors appointment next week. I HATE them. It takes me a week to get back to feeling okay.


I am progressing too. I'm trying to fight it. But I have slush mouth, my breathing is weird, I have a hard time swallowing, my arms ache from doing all the work.


I'm doing most of my own cooking. I force feed myself. I look at the kitchen clock and say, "now I will eat for the next 25 minutes".  No joy, all work. I carry around sunflower seeds and nuts to keep from ever having an empty stomach. 


My big sin is the morning, coffee time. I sip coffee for an hour or so on an empty stomach. It's not a good idea but I live for it.


My weight (I think) is around the same. I hope.


I went to see a naturopath. He gave me a protocol. I'll try it for a couple of weeks. He told me I had a weak lung, a bad liver and spleen and other stuff, from looking at my tongue and taking my pulse. (He was right, I had a tiny part of one lung collapse from an infection about four years ago- perhaps this was the beginning).


And for tonight? Maybe I can have an optimistic outlook. (just tonight)


Blue Skies, when you're feeling scared or down, remember - there are a lot of things going on right now with drug trials. One of them will prove effective in the next year. 


Something good will happen with stem cells. It IS going to happen.


We'll be part of a group of people that survives this. When you're feeling down or weird. Picture being on 60 Minutes talking about the miracles that saved your life. Do what you have to do, to get to that 60 Minutes or New York Times interview. The mind informs the body. Inform your body that you will be strolling around the Louvre in ten years.


-CR

Jackie

Jackie
Originally uploaded by Charlie Roberts

Cupcake Cafe

Cupcake Cafe
Originally uploaded by Charlie Roberts

BROTHER

HALFWIT

I finally meet  John or "Clipped Wings" in DC.  A former airline pilot, John had just finished building his own house (with it's own landing strip) when he was struck down by ALS.

I've often written to John because he is the most articulate on "Patients Like Me" and he has done and continues to do, gobs of research.  He's the most vocal, righteous voice on "Patients Like Me".

When I was first diagnosed, I would send him links to articles I discovered on the web, articles that I thought might have something to do with a cure.

Most of these links were stupid. These were articles about how to rebuild muscle or possible cures for MS or Parkinson's. But John was pretty nice about answering each one of my suggestions.

On his personal page on "Patients Like Me" - instead of using it for personal information (I have stuff about being an actor) John wrote this...

__________________

Instead of blah,blah,blah about me, this space is better utilized to tell you how I am fighting ALS.

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.

___________________________

I was (and still am) inspired by John's plain-speaking autodidactic approach.

I knew he would be in DC. He wrote on a posting that he would have big signs taped to his wheel chair,  with slogans like "Don't let my Daddy Die!" and other signs having to do with being a young father. 

And when I spotted his wheelchair in the enormous Marriott lobby, I got a few butterflies. I figured we might engage in defiant rhetoric. "How you likin' that ALSA?" he'd ask snidely.

I pictured him lecturing me about not giving into their hot air and then giving me a hard handshake with a "go gettum" smile. 

John's chair (I could see) had the signs as promised  (along with some attention getting wind whirly-gigs) - we need attention not a tea service buffet - he's right!

I spotted him in a group with fellow Virginians preparing to attack the hill.

I scooted up and brazenly interrupted the meeting.

"Are you Clipped Wings?" 


(I felt giddy, like we were pen pals meeting for the first time, or I was meeting a favorite writer).

I couldn't see his face, his back was to me, but his young and very pretty, blonde wife, answered for him.

"Yeah, that's John. He's clipped wings." (She seemed tired, a little bitter).

"John, you have a visitor."

John turned around and... like EVERY f-cking thing with this disease, my heart sank,  another crushing disappointment....  and, at this point, there's no place to put the lost hope, no drawer to chuck it in.

John is very thin (wasted). He cannot speak. He cannot raise his hands from the sides of his wheel chair. He's terribly weak. He reminded me of men I'd seen in the final stages of HIV.

"Oh! John! It's me! Charlie Roberts! I just wanted to say hello." 

"Well thanks for stopping by Charlie" his wife says for him.

... and then I must back out of the little meeting because there is nothing else to say. John can not speak.

"We write to each other on "Patients Like Me" - I over explain, I smile weakly,
 " and... I just wanted to say hello... so ... hello!"

I scoot away and John cannot even turn his head to say good bye. 


The caregivers are like tired parents, the people with ALS, their undeveloped troubled children. And each of us with ALS, have our own individual developmental problems. Our meetings and interactions are off and unsatisfying. Our caregivers, like anxious parents, have to make it all okay.


And...

The weird thing about ALS is.... and I have experienced this in small ways,  John's body looked withered and weak but his mind is perfectly sharp. If he had had AIDS or cancer, his mind might have been exhausted and weakened too. But with ALS, you have this feeble body with an untouched brain. People react to you -speak to you, like you're addled, but you're not. Your imprisoned in a rotting body with a perfectly stable clear mind.

As I was backing away from the group, I heard the same patronizing tone in MY OWN voice that so many others have used with me.


"Just wanted to say hello!" I say to the healthy wife, implicit that I'm still in her world, not his.

You see a feeble person, you can't help but speak to them like they're a halfwit. 

Times Square

Times Square
Originally uploaded by Charlie Roberts

MARCHING THE HILL

Tuesday morning, I shave, and put on a blue tie and a white Brooks Brothers shirt.
I make sure my cameras are fully charged.

We gather in the hotel lobby and then board a bus waiting outside the hotel. Temporary ramps have been put up around the hotel for wheelchair access.

I will be visiting the two senators from New York, and about six representatives from the House. I'll travel in a group of twelve other New Yorkers. We've been instructed to stay on topic, to simply tell our stories. We're not asking for much, "a drop in the bucket" I'm told.

We want ten million dollars to complete an online registry. This is imperative for researchers to put the clues together. (One of the frightening things about ALS research, I've learned, is that none of the disparate groups communicate). An online registry will help unify research.

We also want 15 million for research. This money will be given to the DOD, or the Department of Defense. It's already in the budget.  The money simply needs to be allocated to ALS research. Why the DOD? Because an alarming percentage of the military will end up with ALS. Nobody seems to know why.

We are told to emphasize that these are program requests, not earmarks.

For the meetings with Senator Gillibrand (she replaced Hillary Clinton) and Senator Schumer, there are  two other men with ALS. But for the rest of the meetings, I am the sole person with ALS.

This was surreal.

I was treated like a prized celebrity. I was the star. I immediately adapted to that personality I keep in reserve - the one where I'm the principal actor on the set or studio. I'm special. I keep hearing, as we go from office to office, "Where's Charlie? Make sure Charlie's in front. How's Charlie? Is Charlie okay?"
It was like I was the best, the most experienced, the most effective speaker of the bunch. But I'm only the most effective because my story is the most current and visceral.

What's more, I have to listen (over and over) to the other's stories about how their own lives were torn apart by the disease. I heard stories about their mothers, husband's, or son's horrific ending. I listened again and again to how their families have never fully recovered from their experience with ALS.

Still, I was good at telling my story. And I changed it each time - adding new details to keep it fresh.

In one office, I began by talking about living in Washington twenty years ago, singing and dancing in a Tony Award winning musical at the Kennedy Center.  I described how I biked to work every day from Georgetown. And then I brought it back to the present. I am back in DC, unable to walk, slowly losing my ability to speak, much less sing.

Or,

in another office, I would talk about casually going to my first neurologist's appointment.  At the time. I assumed I was being way overly cautious. I described being asked to (simply) walk a straight line in the examining room, dumfounded that I couldn't, and then being told I was in "serious trouble" and asked "was there anyone who could take care of me?"

In representative's King's office, I tried a new approach.

As we walked into that office, I glimpsed at Washington through a nearby window and felt this welling of patriotism. I mean, here I am in Washington, scootering through the hallowed halls of congress!

And my mind wandered to this...

I remember staring at cut out silhouettes of George Washington and Abraham Lincoln from the desk of my first grade classroom in New Canaan, Connecticut. I remember being told by my teacher, Miss Richards, that ANYONE could be president of the Untied States and I believed it. For a while (at least through third grade) I harbored a secret ambition to become president of the United States.

Also, I thought about what was great about this country - our far reaching ambitions, our American desire to win, to place, to get the first man on the moon.

Surely the United States would not lackadaisically allow solid Americans to die, year after year.
Surely, not giving all the money needed to break barriers and win (to help fellow Americans) goes against everything that makes our country great.

So in King's office, about three lines into my story, I said,

"I love my country, and I know my country would never let me down..."

and,

I lost it.

I cried silently, my shoulders shaking up and down. Someone came over and rubbed my shoulders. Someone else stepped in and told their story.

I lost it, not because I had ALS, or because I was exhausted from getting up at seven in the morning and filing in and out of congressional offices all day.  I lost it because I understood - I was awakened to the undertanding that my great county, the country that had inspired me as a seven year old - a country where anything is possible, where we take care to be the very best... my country (or my vision of our county) had officially dried up. It crushed me to have to plead for help.

___________

Still, the day was fun. We started out in the Russle building which is lovely and old with polished marble floors and mahogany wood doors with those little windows on the top to help ventilate the subtropical Washington weather.

Then onto the Hart building, which is new. The Hart building has an enormous Calder sculpture in the middle of it's vast central atrium.

The young people that roam the hallways look like the best and the brightest; the men with short haircuts and billowing button down shirts, the women, impossibly capable and intelligent. All TV sexy.

The ALS Research Lecture

The morning lecture consists of four speakers.

Petra Kaufamann, MD, MSc, Director of the Office of Clinical Reseach (OCR) at the National Institute of Neurological  Disorders and  Strokes, which is part of the National Institute of Health.

Kevin Horoton, DrPH, MSPH, Cheif of the Surveillance and Registries Branch, with the Division of Health Studies, at the agency for Toxic Substances and Disease Registry (ATSDR) in Atlanta, GA.

Dr. William (Bill) Mathew is the Director of the Office of Translational Reseach at the National Institute of Neurological  Disorders and Stoke (NINDS) which is part of the National Institute of Health.

Lee Rubin, PHD is Director of the Translational Medicine and the Harvard  Stem  Cell Institute and a member of the Department of Stem Cell & Regenerative Biology.

The stem cell lecture was the best.

There was someone else after him, a woman from Columbia University, who talked about a program where scientists are taking cues from ALS patients, listening in on their homegrown treatments (so to speak) on the web, and then doing their mini clinical trials based on these hearsay treatments.

This startled me. I realized, when I heard this, that you cannot count out a single possible treatment because research is so still so nascent. The program is called something like,

 "Tweets and Twitters, ALS Untangled"

This woman also talked about the importance of clinical trials.
 Treatments without controlled trials is lost time.

All of the lectures were good. Still, the phlegmatic approach to the lectures made me angry.
This country wasn't founded by cool and collected revolutionaries enjoying lavish dinners and lovely table settings. AIDS wasn't controlled by the calm and collected. After listening to one of the speakers I had this impulse to yell ... "FIRE! There's a f-cking fire going on and your cooly talking about setting up programs to discuss the best fire escape protocol." It's hard to swallow.

As one patient said, through a computerized voice, "it feels like Ground's Hog Day. Every year we hear promises of great break throughs but nothing ever changes. You talk about the importance of Advocacy. Where are the PSAs for ALS?"

ALSA's website, proclaiming amazing things about to happen, was written twenty years ago. It hasn't been changed, nothing has changed. Maybe, better wheelchairs and more money for Vets?

__________

I asked CAR to send me her notes on Rubin.
Here is what she emailed back.

I will write from memory for 15 minutes before I pack the lunches -- and meanwhile here is a link to an article about Lee Rubin.

 http://www.hsci.harvard.edu/newsroom/foundations-support-hscis-search-potential-motor-neuron-diseases-therapies 

He said that they have been able to create motor neurons from stem cells and do experimemts with those new motor neurons to find out what kills and what helps build them. They've discovered three compounds which affect motorneurons (1) receptor inhibitors, 2) ___________, 3) ________________)) and are trying to discover which environmental chemicals contain those compounds, and they are also working with pharmaceutical companies to develop medicines which, for now, might help defend the remaining motorneurons and slow or stop the disease. Hopefully then in the future they can also find ways to rebuild motor neurons -- I think that's what he said.

Also good was the Columbia U researcher who explained why studies are important, and that rumors and blogged and tweeted treatments of things that MIGHT work can create confusion and not knowledge. Examples of things that turned out to be ineffective: the medicine for bipolar, and something else. She said that now scientists are trying to capture the "buzz" from the internet on what works and they are trying to test them in small Phase I and Phase II trials to see if any potential effectiveness is suspected before moving on to the more time-consuming Phase III trials.

Okay -- more later.....