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Originally uploaded by Charlie Roberts
Sunday, March 21, 2010
Saturday, March 20, 2010
Friday, March 19, 2010
Thursday, March 18, 2010
Tuesday, March 16, 2010
group
Emmett calls me Saturday morning to ask if he can stay over because he has a meeting in Chelsea tonight.
And... do I want to come?
Emmett studies an (emotion freeing therapy) called (something like) "Physiogenics" or "Transbionics". Followers from various locations will meet tonight for a special meeting called, "Taking Risks."
"It sounds like a lecture."
"I'm not sure how it will go tonight' says Emmett.
"Can I take notes? Will anyone mind?"
"Sure! I don't see why not."
I'm game. I'm searching. And I need to get out of the house.
At 7:15, we cab to NOHO. It's raining, a dark loud rain. I can't tell where we are.
We're dropped in front of an old office building.
The gilt lobby has an old fashioned brass mail chute. The crumbling art deco decor is adorned by a single plastic bush. I take a picture of it.
This lobby feels good (to me). That shabby (old-world) lobbies in B - list office buildings still remain in a city where everything is cut up and rehabbed - is a relief (to me). I've walked in and out of the these tired lobbies for years.
On the elevator, we greet two attendees. Emmett knows one of them from a meeting he went to last month in Nyack. We timidly all say hello to each other like we're going to the same birthday party.
I've forgotten about my disease.
Sometimes I forget about my disease.
I wear the bike helmet and use the walker but it doesn't feel tragic - more like a sports injury.
When we arrive, we're told to remove our shoes but I skip it and find my way to the main room. Elliott stops to sign us in and greet fellow students.
The room is set-up with chairs around the outer edge - and a dozen pillows for kneeling and resting, in the middle. I study the crowd. There are close to fifty people. It's a good house.
The men and women in the room look soft and nerdy; sloppy clothes, fuzzy hair - no sleek types here. Everyone is middle-aged (mostly).
I find my seat without apology. I feel special - like a very pregnant woman- I feel liked and respected for my physical frailty.
"Let me get your coat. Here take my seat."
"That's okay, that one over there will do.... thanks."
I sit. Someone gives up their seat so Emmett and I can sit together.
I stare.
There are two men in front of me.
One, quite handsome and the other, round and maybe Hispanic. The men are in a deep embrace. The handsome man is crying. They hug like lovers (or) as if one of them had just received very terrible news. The hug is so intimate I can't help stare.
"I am staring Emmett. There is a lot of hugging going on around here."
"Well, takes getting used to - but people know each other here pretty well. They've really seen each other's vulnerable sides. I had a hard time at first. But, I hug now too."
When the men break apart, they stare into each other's wet eyes and and nod.
... as if to say, "I get you. I see you. I love you . I know you. All is good."
I feel uncomfortable. I can't look into anyone's eyes and nod and smile. I'm in trouble.
At the end of the room is a table with a replica of an enormous bent erection. It is not phallic. It IS a penis. There is also a large foam cube covered in cloth with a tennis racket and a baseball bat leaning against it.
The first leader (blond and handsome) - begins the meeting. He is missing a hand.
He introduces an older man, the second leader. He is tired and sagacious. Emmett tells me that before he became a teacher and leader of this technique he was a dentist!
The crowd focuses. The room is nervous, like the first day of an acting class. People over-laugh at the weakest joke. I do too. I am grinning. I am nervous.
The older leader speaks.
"This night is called "Take a Risk". It's a little different from what we usually do. And for all those who have travelled in this rain - thank you - your participation and devotion is noted."
The first volunteer is requested.
The handsome man who was crying in the deep embrace bounds to the alter. I'm thinking - "good". Eye candy! Thomas is easy on the eyes AND I'll get to find out why he's crying.
The leader quietly and sagely leads Thomas.
"Thomas, what is your risk? What is it that you want to explore with us tonight?"
Thomas faces the leader and says,
"I'm so scared. I'm so uncomfortable. I can't calm down. I'm so frightened about lack of work and money. I can't calm down!"
(I can't help think - that's it?!! That's all you got?!)
The leader responds, "Well Thomas I know you've been working on this for a while..."
The leader sounds disappointed and reproachful of Thomas. The leader is thinking the same thing I'm thinking, not much of a risk.
Thomas who (by the way is dressed) really well in kind of cool, fitting stretch jeans, jaunty sneakers, a simple crew neck sweat-shirt with a colored tea popping up through.
Thomas looks like he might be French, with thick shiny dark hair, his bony sculptured face and flawless skin. Thomas could be a total dick if he wanted ,Thomas is a hottie, but Thomas stands there quivering like an open wound.
The leader speaks again. "Perhaps, you'd like to offer a prayer for yourself."
Thomas is now breathing heavily, his chest heaving. He's really upset and he's loving it.
"Well, I guess. I want to ask G-d to give me strength to continue to be there for myself, to not duck out, to be present. And I want to ask G-d, to forgive myself."
The leader stops Thomas.
"Thomas. Why do you need forgiveness? You've done nothing wrong. You're struggling. What is there to forgive?"
"Well, I guess, it was just part of my prayer and..."
But Thomas stammers and loses ground and takes back the part about forgiving himself.
The leader gently speaks again. (He's very delicate and quiet, like a guru acting teacher.
"Thomas face the people out there... and everyone in the room, please stand up and face Thomas. If you wish Thomas well, if you support Thomas stand up, but if don't or are ambivalent, don't stand up. It's up to you."
Thomas turns to the room. He bends his knees. He opens his hands (Christ-like). He takes deep breaths, his eyes red from crying. But he's loving this. He's really getting something out of this.
Everyone stands - except for one guy in the corner - and me.
I'd make the effort, but it will be so much effort. So I just try to sit up and look empathetic.
Thomas makes eye contact with everyone in the room. When he looks at me, I nod gently and flare my nostrils a little.
"Thank you" he utters.
The leader steps back in and says "Who wants to give Thomas feedback?" A young woman in sweats speaks out, "Thomas, that was brave. I really care for you. I see your progress. I have fear about the same issues. I'm really moved." A man in the back says, "I love you Thomas. We are here for you." A few more people speak. Thomas sits back down in his chair, hugs a neighbor and continues to cry.
Wow, I think. This is gonna be good.
The evening proceeds.
A woman (married and pretty) is told she is hiding here sexuality. The leader tells her to address the man she is most attracted to in the room. Point to him. Now. As she searches the room I try to recall if I'm sexy. For the brief time she searches the room, I hope I'm not.
Turns out she is attracted to another woman in the room.
The woman is asked to join her. She tells the woman (who is blond and vavoom-ish like an aging TV actress) she would like to suck her nipples.
This took a lot of coaxing. This was a major risk. I have to say, the woman taking the risk looks radiant. This really could work (I think).
A young man with a smart bony face and a calm intelligent energy risks that he wants to belong. But before he can address the room to ask to belong, the leader forces him to admit that he thinks he's smarter and better than everyone else in the room.
This quick assessment from the leader seems presumptuous. But indeed, the young man conceded it's true.
The leader asks him to hit the foam cube with the baseball bat over and over while saying, "I'm better than you, I'm fucking better, I'm fucking smarter than every single person in this room." He hits the cube for five minutes and is reduced to heaving exhaustion. He's heaving from the work out. The leader hugs him, a body to to body embrace.
The young man addresses the room. "I just want you to like me. I just want each and everyone of you to love me"
The young man goes back to his seat and puts his head in the lap of the man next to him who slowly pats his head like he's petting a cat.
And then Emmett gets up.
And I think, dear g-d no.
But this is take a risk night. And he's driven all the way through the rain from Connecticut.
I can't tell you what Emmett's risk was. But it was super honest. It wasn't shocking and it involved me.
When feedback was requested, I knew I should speak but I wasn't familiar with the language and technique of the therapy. I quickly tested what I would say (in my head) but it was super rational and slightly defensive. So I just nodded.
When Emmett sits back down I rub his arm. Hardly an intimate embrace but I have problems with touching.
At the end of the evening, we stand in a circle (I clutch my walker) and listen to a song.
Monday, March 15, 2010
Charlie in Wonderland
Blue Skies,
I just had my clinic appointment at Beth Israel. They were nice. They were good. I'll order a wheel chair now to have in the wings. The doctor was serious but funny too. Irish accent. Pink shirt. Pink tie. Natty. He'd been bowling in my building.
I asked about a few things.
LDN not worth it to him. There is zero on it.
Monterrey unproven. Nothing published. Is that true?
The trial in Atlanta is the only one he mentioned to watch. Losing weight is what will be my end... so gorge (I guess).
Do as many alternative therapies as you like, just don't harm yourself. And, they COULD help. Who knows?
They have a trial going but I can't join because I'm allergic to Peniscillian. (sp?)
He told me I had definitely had ALS which hurt me all over again like I was hearing it for the first time.
It was fine. Although I did discover that I can't properly cough (anymore). Funny, the things you lose with this thing. My upper body strength is still quite strong. My FVC has gone down. A lot.
It occurred to me the for the first time that there isn't really any unity in the medical research world for ALS. It's all fragmented. When the cure comes, it seems like it will come out of the blue and maybe no-one will expect it.
Whenever I leave the doctors, I feel worse, no matter how nice they are. I guess I'm good at denial on a daily basis and then I have about six or seven people talking to me about my life span I get this thud in my stomach, a heaviness all over. There is no escape.
I hate being on the other side of the healthy people. I was on their side, just 24 months ago!!!
Blue Skies, What can we do to get a cure here now? Do you know?
Charlie_Roberts
__________________________________
Dear Charlie,
Here's the cure Charlie, ready?
Live like you dont have als. I really think the twenty year survivors just forgot they had als and als forgot about them.
I think monterrey stem cell might possibly slow down progress. I'm excited about the emory stem cell trials that are just starting. Brainstorm theraputics should come up with something soon. Something will pop.
I get depressed after doctor's appointments too. Important to check in though, once in awhile.
Ice cream, cream in your coffee, full fat yogurt, lots of butter, eggs and bacon, hamburgers; we're upside down.
Sunday, March 14, 2010
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