Times Square
Originally uploaded by Charlie Roberts
Thursday, May 20, 2010
Monday, May 17, 2010
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!
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.
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.
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.....
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.....
Sunday, May 16, 2010
ROOSTER
CAR stays over Sunday night. Our beds are loaded with pillows and big goose-down covers. When you turn in bed, it sounds like a mass of swoosh-ing taffeta.
We set our cell-phone alarms for seven am. Turns out CAR has a crazy, maniacal rooster crow for an alarm. It's terrible. My alarm, is a soft, percussive, tribal, drum beat, that slowly grows louder and louder.
(This why the iPhone is better. It's more advanced, more civilized).
In any case, it's painfully early (for me). I wash my hair in the bathroom sink (I can't get in and out of a shower anymore without a support bench) - and scooter to the morning's first lecture on ALS research. I'm all cleaned up.
CAR will join me later.
We set our cell-phone alarms for seven am. Turns out CAR has a crazy, maniacal rooster crow for an alarm. It's terrible. My alarm, is a soft, percussive, tribal, drum beat, that slowly grows louder and louder.
(This why the iPhone is better. It's more advanced, more civilized).
In any case, it's painfully early (for me). I wash my hair in the bathroom sink (I can't get in and out of a shower anymore without a support bench) - and scooter to the morning's first lecture on ALS research. I'm all cleaned up.
CAR will join me later.
BUFFET CANDLELIT
Sunday night's big dinner is pretty nice: lavish buffets, cash bars, lovely tables.
My friend CAR (who lives in DC) joins me.
Car tells me she needs a drink right away because of her own (very current) life struggle.
(Her struggle is bad, but not as bad as mine).
As CAR said,
"Charlie, you don't pity anyone anymore, do you?"
"nope."
It's great to see CAR. She gathers food at the buffets for both of us. The buffets are extensive and really good.
CAR orders a double and I get glass of red wine from the cash bar. People at my table argue over who gets to buy my drink. (I'm the belle of the ball).
But my capacity to drink wine is getting less and less.
Somehow it's hard to swallow (or something).
We sit at a round table with the other New Yorkers. We meet a family from upstate New York, the Vinci's. They're father, a war hero from Pearl Harbor, died of ALS. I end up spending much of my time with them.
After we get settled, I try to dig into CAR's crisis (avoiding my own) but she's not having it.
So, I pull out my Flip camera and interview people at the table.
It's a joy to have CAR there. She's so presentable and charming.
After dinner we go to a candlelit vigil in Liberty Park, just outside of the hotel.
People stand at a podium and tell their terrible stories.
A group of high school students from the Duke Ellington High School sing inspirational songs from "Rent" and Whitney Houston ballads. They're really good. I try to show my appreciation by making the "whooo! - WHOO!" sound. My voice can't really do it anymore.
We're handed candles. The capital glows in the background.
I'm not sure what I'm experiencing or how I fit in.
My friend CAR (who lives in DC) joins me.
Car tells me she needs a drink right away because of her own (very current) life struggle.
(Her struggle is bad, but not as bad as mine).
As CAR said,
"Charlie, you don't pity anyone anymore, do you?"
"nope."
It's great to see CAR. She gathers food at the buffets for both of us. The buffets are extensive and really good.
CAR orders a double and I get glass of red wine from the cash bar. People at my table argue over who gets to buy my drink. (I'm the belle of the ball).
But my capacity to drink wine is getting less and less.
Somehow it's hard to swallow (or something).
We sit at a round table with the other New Yorkers. We meet a family from upstate New York, the Vinci's. They're father, a war hero from Pearl Harbor, died of ALS. I end up spending much of my time with them.
After we get settled, I try to dig into CAR's crisis (avoiding my own) but she's not having it.
So, I pull out my Flip camera and interview people at the table.
It's a joy to have CAR there. She's so presentable and charming.
After dinner we go to a candlelit vigil in Liberty Park, just outside of the hotel.
People stand at a podium and tell their terrible stories.
A group of high school students from the Duke Ellington High School sing inspirational songs from "Rent" and Whitney Houston ballads. They're really good. I try to show my appreciation by making the "whooo! - WHOO!" sound. My voice can't really do it anymore.
We're handed candles. The capital glows in the background.
I'm not sure what I'm experiencing or how I fit in.
THE YOUNG AND THE RESTLESS
Roll call begins.
The emcee is Kate Lindner, a soap opera actress from "The Young and the Restless."
"Greater New York" gets Sinatra's "New York, New York" and a Yankee's logo.
Kate plays "roving reporter" on the bus, running round the ball room with a mic and interviewing PALS and caretakers. Kate is tireless and determined but her repartee is a little lacking.
"Now who are you?! Let's you and I, have a one on one!!"
(and)
"We're going to fix this thing!!!"
The emcee is Kate Lindner, a soap opera actress from "The Young and the Restless."
The theme for the opening of the conference is a bus ride through the United States.
There are three large screens across the room with which they project appropriate images for each state.
There are three large screens across the room with which they project appropriate images for each state.
When we get to Tennessee, pictures of Elvis appear and "You Ain't Nothing but a Hound Dog" is piped though the sound system.
"Greater New York" gets Sinatra's "New York, New York" and a Yankee's logo.
Kate plays "roving reporter" on the bus, running round the ball room with a mic and interviewing PALS and caretakers. Kate is tireless and determined but her repartee is a little lacking.
"Now who are you?! Let's you and I, have a one on one!!"
(and)
"We're going to fix this thing!!!"
(and)
"Is this fun or what?!"
Kate has beautiful buttery soap opera hair and is teeny tiny. She wears a creamy white suit with two big white buttons on the back. Her creamy coat swings easily around her wasp waist. She's an expert in high heels! (My mother would be impressed).
People stand at the mic and say,
"Remember the Alamo!"
"The state of Illinois has pledged one million dollars!"
"Attack the hill!"
Kate keeps things moving along. But the whole thing feels like a kid's show. (I should know, I did dozens of them in the nineties). And in all fairness, it's a tough house. A percentage of the audience can't speak or clap their hands. This pushes Kate to try harder. I see flop sweat on her TV ready makeup. But I appreciate her effort. Her brother died of ALS.
And, I observe myself. Always the observer, never the participant. Always a little snarky (my mother's word) never letting go to the moment. (I guess I save that for the stage).
"Is this fun or what?!"
Kate has beautiful buttery soap opera hair and is teeny tiny. She wears a creamy white suit with two big white buttons on the back. Her creamy coat swings easily around her wasp waist. She's an expert in high heels! (My mother would be impressed).
People stand at the mic and say,
"Remember the Alamo!"
"The state of Illinois has pledged one million dollars!"
"Attack the hill!"
Kate keeps things moving along. But the whole thing feels like a kid's show. (I should know, I did dozens of them in the nineties). And in all fairness, it's a tough house. A percentage of the audience can't speak or clap their hands. This pushes Kate to try harder. I see flop sweat on her TV ready makeup. But I appreciate her effort. Her brother died of ALS.
And, I observe myself. Always the observer, never the participant. Always a little snarky (my mother's word) never letting go to the moment. (I guess I save that for the stage).
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