Central Park
Originally uploaded by Charlie Roberts
Saturday, November 7, 2009
Dr. Wang
Dr. Wang can see me right away.
I'm in his tired examining room sitting across from his desk.
He offers a quick hello and studies my files like an actor going over his lines before a big scene.
He asks me how I am doing, what I am doing, and if I've improved.
He asks me how I am doing, what I am doing, and if I've improved.
I tell him, I (now) eat organically, I swim daily (or every other day).
I take lots of vitamins and antioxidants.
I take lots of vitamins and antioxidants.
I attempt to explain the website (Patients Like Me) to him.
"And do other people with your disease see acupuncturists?" he asks.
"Some do, but others have given it up because they see no positive results."
"How does this website make money?"
"I'm not sure."
Dr. Wang is concerned with money. Not in a capitalist Donald Trump way, but in a whole-body integrated, health, kind of way.
"No money... not enough money? Feel bad, bad for the body, bad for the nervous system."
And here Dr. Wang makes a sour expression to illustrate his point as if I was the one having a hard time understanding english.
"How does this website make money?"
"I'm not sure."
Dr. Wang is concerned with money. Not in a capitalist Donald Trump way, but in a whole-body integrated, health, kind of way.
"No money... not enough money? Feel bad, bad for the body, bad for the nervous system."
And here Dr. Wang makes a sour expression to illustrate his point as if I was the one having a hard time understanding english.
Dr. Wang then proceeds with his treatment, a treatment that I have come to know and anticipate.
He talks and then he LISTENS (with great concern) as if I were his son.
He thinks hard. He takes on the burden of figuring out what is best for my disease.
And this is a relief. He seems to be saying, "relax Charlie, I'll figure a way out of this."
He talks and then he LISTENS (with great concern) as if I were his son.
He thinks hard. He takes on the burden of figuring out what is best for my disease.
And this is a relief. He seems to be saying, "relax Charlie, I'll figure a way out of this."
This is the opposite, the VERY opposite response I get from western doctors. Western doctors arrive pokerfaced. Nothing you say, can penetrate their cool, removed equilibrium.
You've got a few minutes. There are a thousand more important things at hand. Time is money.
You've got a few minutes. There are a thousand more important things at hand. Time is money.
Dr. Wang's stern lecture is a good one. It's just what I needed to hear (again).
"You must go to bed at the exact same time every night... because of this disease. You must eat regularly... because of this disease. You must not get upset or think too hard or get too sad ... because of this disease. Drink fresh water, exercise lightly. Go to parties, be happy, but you must go home early and sleep... because of this disease."
He tells me that I should not spend my time researching the disease or conversing with other who have the disease. I should leave that to (one or two) special doctors. Check in from time to time to see if there is anything new that will help, and if there isn't, go home and forget about it.
I won't embrace this view.
I tell Dr. Wang there really are no doctors for this disease. It's rare. There is no cure. There is nothing but alternative methods (so far). There is research, but no proven medicine. So I have no choice but to read, to research, to help myself.
Dr. Wang seems concerned .... "how many people have this disease?"
"I think (and I'm not sure, I can't bear to read statistics about this disease) "I think there are roughly five thousand new cases a year. It's pretty rare."
"Okay Charlie," Dr. Wang says, "I'm just telling you what I would do. I would relax, feel good, and leave the rest to the doctors."
"Well, I just may have to, because it's all so expensive!
I think diet is important. I want to be tested for food allergies but testing is so expensive."
(Last week I left PATIENTS MEDICAL in a controlled rage because they don't take medicare.
(I recently switched to Medicare from SAG. It looks like, I can't afford to see them anymore).
Dr. Wang tells me, "this disease has nothing to do with diet. This disease they can't explain. This disease there are no answers. The best thing to do with this disease is to take care of nervous system and immune system."
I think diet is important. I want to be tested for food allergies but testing is so expensive."
(Last week I left PATIENTS MEDICAL in a controlled rage because they don't take medicare.
(I recently switched to Medicare from SAG. It looks like, I can't afford to see them anymore).
Dr. Wang tells me, "this disease has nothing to do with diet. This disease they can't explain. This disease there are no answers. The best thing to do with this disease is to take care of nervous system and immune system."
"Now Charlie, (getting back to my paperwork) have you improved since the last time I saw you?"
"No, I would have to say I've declined. It's a slow decline." (I put my hand in front of my face and make my hand slant downward to illustrate the idea of decline).
Dr. Wang nods.
He understands but then he seems to take this decline personally, like his protocol, which always works, has sprung a leak.
His anxious concern is a joy to me. It's a relief.
He understands but then he seems to take this decline personally, like his protocol, which always works, has sprung a leak.
His anxious concern is a joy to me. It's a relief.
"Let me see you walk."
I show him my groping, loping, walk.
Dr. Wang gets right down to business and puts his hands all over my legs and butt, like a tailor in a mad hurry.
Dr. Wang gets right down to business and puts his hands all over my legs and butt, like a tailor in a mad hurry.
"Your legs are cold. Feel. Do you feel that?"
"Yes, I know its part of the issue. We all have cold legs."
"This is no good. Your legs are not getting nourishment. The blood is not getting down there and this is no good. You must use a heating pad and keep your legs warm at night. And when you lie in bed in the morning, you must do these exercises."
(He shows me some exercises that vaguely resemble bicycling in the air).
He insists that I eat the royal jelly. I tell him (the last time I tried it) I had a hard time swallowing it.
"Mix it in orange juice. Not soup, not coke, just juice."
He stares at me to make sure I'll follow his directions.
He stares at me to make sure I'll follow his directions.
"Okay, I'll do it." (Everything will be okay. Dr. Wang is so resolute, I can let go).
Dr. Wang brings up Florida. "Didn't you say you had family in Florida?"
I tell him I could go to Florida but I think I'd wilt there. New York (in a way) keeps me brave.
Then Dr. Wang says with quiet intensity,
"You very strong person Charlie, and this is GOOD!"
I nod this away. I negate it.
"No! I think this is true. You very strong person." - (Like he's breaking with code and letting me in on a secret).
"I think you should write a book. I do! I think people will be interested. You bike, you cook, you swim, you work (and he gets this wrong, I don't work, can't work) you meet with different doctors. This is good. It's very good. You very strong person. I think so."
And I feel a well of pride gush from within like someone told me, I got the part.
"You very strong person Charlie, and this is GOOD!"
I nod this away. I negate it.
"No! I think this is true. You very strong person." - (Like he's breaking with code and letting me in on a secret).
And I feel a well of pride gush from within like someone told me, I got the part.
Dr. Wang and I do the needles, and as always, I fall into a deep sleep.
Before I leave, he gives me a brush to spank my legs, to bring the blood flow to my feet and lower calves. I'm to use the brush in the shower.
"I'll see you next week, Charlie," he says like an order rather than a suggestion.
And I feel like I've really impressed Dr. Wang with my strong character and fortitude.
Not wanting to disillusion the doctor, I remain solemn and stone-faced as I leave his office.
Not wanting to disillusion the doctor, I remain solemn and stone-faced as I leave his office.
Friday, November 6, 2009
RUMI
This being human is a guest house.
Every morning a new arrival.
A joy, a depression, a meanness,
some momentary awareness comes
as an unexpected visitor.
Welcome and entertain them all
Even if they're a crowd of sorrows,
who violently sweep your house
empty of its furniture.
Still treat each guest honorably,
He may be clearing you out
for some new delight.
The dark thought, the shame, the malice,
meet them at the door laughing,
and invite them in.
Be grateful for whoever comes,
because each has been sent
as a guide from beyond.
Every morning a new arrival.
A joy, a depression, a meanness,
some momentary awareness comes
as an unexpected visitor.
Welcome and entertain them all
Even if they're a crowd of sorrows,
who violently sweep your house
empty of its furniture.
Still treat each guest honorably,
He may be clearing you out
for some new delight.
The dark thought, the shame, the malice,
meet them at the door laughing,
and invite them in.
Be grateful for whoever comes,
because each has been sent
as a guide from beyond.
Thursday, November 5, 2009
Wednesday, November 4, 2009
Tuesday, November 3, 2009
15
They're ready for me. My name is called along with Tony's and a blond guy I've never seen before. The nurse leads (the three of us) past reception down the long hallway, making a left at the very end of the hall, into the IV room. The IV room is nearly full, so we sit clumped together at the far end, (the less desirable location).
Tony, I already know.
Last week, during our IVs, he recommended a recipe for kale. (Add pan roasted pumpkin seeds and olive oil). I made it - (substituting acorn squash seeds) and it WAS good.
Tony's a rock musician from Park Slope and comes into Manhattan for a weekly IVof vitamin C. He looks (to me) like he recently escaped the dark world of drugs and rock and roll. Today, he grins and preaches the good word of vitamin C and an all organic diet.
We sit, and I disengage.
I read my book about the power of antioxidants; about glutathione, coque 10, alpha lipoic acid, vitamins A, C and E. I try to focus, but Max pops his head into our room and starts talking to the blond guy (who sits directly across from me). I can't concentrate on my book so I listen to their conversation. I have no choice.
I read my book about the power of antioxidants; about glutathione, coque 10, alpha lipoic acid, vitamins A, C and E. I try to focus, but Max pops his head into our room and starts talking to the blond guy (who sits directly across from me). I can't concentrate on my book so I listen to their conversation. I have no choice.
Max runs the supplement store at the clinic.
Max bugs me.
Last week, I requested a particular supplement from Max. (I was told by the nurse to speak to Max about getting NAC, a form of glutathione before it becomes glutathione).
“Are you Max?”
(lost at his computer screen)
“Um... What? Max? No... I'm not... wait. What? Yeah, I’m Max.”
Max couldn't find the NAC. The nurse went into Max's vitamin store and retrieved it for me.
So today I can't look at Max. I can't stand Max.
Max and the blond guy are talking about a show.
"The hang went well" (as in the light hang - I think).
They talk "DUMBO.
They use the work "dude" (a lot).
They knock their knuckles together in solidarity.
This is grating.
"The hang went well" (as in the light hang - I think).
They talk "DUMBO.
They use the work "dude" (a lot).
They knock their knuckles together in solidarity.
This is grating.
I want to focus on my reading. I want to learn why L Carnatine is important to take with Glutathione,
but I can't. I’m in the middle of "dude" conversation.
I'm bugging out, so I decide to change the situation. I’ll join in!
I push my heels into the floor and say,
"Are you guys talking about a show?"
They don’t hear me. (My voice is too weak).
After Max leaves, and after my B12 injection, I again push my heels into the floor and project,
“Hey! Are you guys actors?!”
The blond guy is startled. This is too much for him. His eyes widen. He clears his throat.
“What?! Me? An actor? Oh G-d no. I could never do that. I could never be an actor. I don’t have the strength to be an actor. No, I have friends who are actors and all that discipline and hard work they put into it? No, I could never do that.”
He seems flattered to be taken for an actor, and this humility gives him an air of integrity (to me).
“Oh. I thought I heard you guys talking about a show and a tech... hanging lights?”
“No, we were talking about ART shows. We were talking about hanging PAINTINGS. We’re artists... and I’m also a musician. We’re not actors.”
"Oh. I see... My name is Charlie, by the way."
"Ellery."
Ellery looks like I’ve woken him from a nap.
And because of his blond, callow, handsomeness, and because earlier he had talked loudly and confidently (in front of me) on his cellphone (an intimate call - where he complained about sleeping twelve hours a day "because of the MS" - He ended the call with “I love you” and I thought - GOOD! That’s what I'll do to heal myself! I'll end every one of my phone calls with “I love you") - because of these things, I assumed he'd offer a polite answer and blow me off.
But Ellery doesn't blow me off. In fact, he seems concerned I'm paid my due respect. His germanic complexion is flushed (as if he’d always had a crush on me) and now that I’ve finally spoken to him, he's flummoxed. He darts (in and out) of uncertain smiles, but keeps his focus trained on me, as if following some rules of how to speak to a stranger.
“Hey,” I ask, "are you working mostly with alternative medicine? Or are you basically using mainstream, western stuff?”
“Oh Gosh... I was, I mean, I’ve had this, I’ve had MS... since I was like twenty-one and I’m thirty-four now, so I’ve gone through different strategies, for sure.”
Ellery looks honest but nervous in a bemused way, like he's talking about his gambling addictions, sad but (whacha gonna do?)
“The last medication gave me panic attacks. I’m still not over them. They’re awful. And once you get them, your mind teaches you, you have no control over them, that you’re at their mercy. They’re pretty awful.”
He seems amused at how awful they are.
“Yeah, I’ve had those... (25 years ago) you kind of have to relax, and roll with them, and train your mind not to experience them as scary.”
“Right, exactly, yeah I get that. I know!
But after that, I decided no more western medicine for a while. I’m just so tired. I got to keep working at this. I'm really tired of being tired."
But after that, I decided no more western medicine for a while. I’m just so tired. I got to keep working at this. I'm really tired of being tired."
Ellery looks remarkable healthy and put together for someone sleeping away his life. He's wearing clean topsiders with geometric socks and an ironic madras preppy shirt. It's not an actual look, it's a comment on a look. Maybe he doesn't have MS anymore (I think).
“How did you know that you had MS? How did you first know that something was wrong?”
“Half my body froze in four days. I was paralyzed.”
“Geeze! Did you go blind too? Someone told me that you go blind when you get MS.”
“No, but I had double vision for like, two years. I just lay in bed. My friends would come over and visit me as I lay there with water just falling out of my eyes. I couldn’t control it. It was so weird. No wonder they stopped coming over. It was freaky, man.” Ellery tells me this with a half formed smile on his face, a smile that conveys both amusement and horror.
Maybe I can help Ellery out.
“You know, have you been on PLM? It’s kind of like Facebook, only with diseases. It’s great for research.”
“Thanks. I’ll definitely check it out, but I think I'm done with research. I couldn’t get out of bed for a few years... I just slept and read medical journals. So, I think, at this point, I’d just rather be out there... doing... know what I mean?”
“Yeah, I do, but I’m new (to all of this) so I guess, I can’t really get around reading and research. I don't have what you have... it's in the same world... but it's not really the same thing. I'm kind of guessing at what to do. Today I’m getting a glutathione push and a B12 shot.”
“Oh sure, I used to do B12 shots everyday in San Francisco. Just a quick jab to the leg...
Hey! write this down. Do you have a pen?”
I grab a scrap of paper and a pen from my man-bag.
“Yup, go ahead.”
“L.D.N, you might want to try L.D.N."
“Right!! That’s what... that’s been recommended to me before. I need to get on that! There’s just so much to look into. I’m going crazy. I feel like all I do is take pills and eat, and when I’m not eating, I’m waiting until I have an empty stomach so that I can (again) take the pills I need to take on an empty stomach!”
“Yeah man, welcome to my world. All I do is pop pills. I bet we could have a contest in this very room to see who could get down more pills in the shortest amount of time.”
Tony pipes in,
“Dude, I’d lose that one! I hate swallowing the pills.”
Because Ellery is so handsome, young(ish) and vulnerable, I blush as we lock eyes. Maybe I’m getting my signals wrong. Maybe we’re not talking about disease at all, maybe we’re flirting. So I lower my energy. I dim my wattage. I try to convey to him that we can break the conversation off, whenever we need to, whenever it's convenient, but I can’t help (my own) unrelenting questioning.
“So, you come here for a vitamin C drip?”
“Vitamin C and others.”
“I’m here for glutathione.”
“I love glutathione. That’s my favorite. I’m having some after this. I take it at home. It’s really a favorite of mine, makes me feel... just right... you know?”
“I know! But it’s so expensive.”
“Tell me about it. I come in here once, twice, a week. It adds up.”
“And the hundreds of dollars for supplements every week.”
“This is my life.”
“I mean I’d like to try the oxygen tank, but it costs so much.”
“Hyperbaric Oxygen Therapy. I love it. Really can feel the difference.”
Tony adds, “I dig it too. Love that Oxygen. Really makes you feel great. (like he’s talking about mescaline).
I come up with a list of my own practical, less expensive therapies.
“Well, I’m just trying to eat organic and...”
“Organic, yeah, I mean that’s a given. I wouldn’t touch anything that wasn't organic. No way.”
“And I’m trying to clear toxins from my apartment but I mean... I live on 42nd Street!”
“I’m right there with you. I keep the windows shut and the air purifiers going.”
“ I take long baths to relax.”
“Sure relaxing is good, but how you can trust the city water? You’re lying in a tub filled with water with toxins letting them seep into your pores... I mean, (I guess I think of everything) but I have my water delivered and then, I purify it again. I put some quartz in the water to make sure it’s okay.”
“ Where do you get the quartz?"
"San Francisco. They're years ahead in the world of healthcare. All those hippies."
"That seems like so much.”
“I got to do it. My body is filled, WAS filled with so many toxins. Mercury.
It took me years to get the metals out.”
“How do you think they got there in the first place?”
“When I way younger, I lived in California and the lower east side. Both places I lived in had areas of heavy construction. In the buildings I lived in, and around me. The dust from the construction, the metals and poisons I lived with... I really think it did me in.”
“I actually moved into the building (I live in now) when it was still under construction. They hadn’t even finished dry-walling yet. I was a mess for months.”
“You got to watch out for that stuff.”
“What about everyday things, like the microwave? Do you use the micorwave?”
“I would NEVER use a microwave.”
“I just got rid of all my household cleaners. Now I clean my entire apartment with JOY dish-washing detergent and vinegar.”
“You know, JOY has Sodium Lauryl Sulfate. That’s a carcinogen. I don’t let any of that stuff near me."
“What do you use for shampoo and toothpaste?
(Ellery, I feel, looks particularly well groomed).
“You just have to look for the good stuff. Go to Whole Foods. They've got a lot of good products.”
“There are so many things I could investigate, it’s hard to know if any of them are really working.”
“Right, you have to do what feels right for you. For me, it’s really a control issue. I come in for my glutathine or vitamin IV and I feel like I have it under control. That’s what's at the basis of all of this, these antioxidants, it allows me some control of the disease... which is completely contrary to how I was brought up, a buddhist, which of course encourages you to let everything go. (Ellery doesn’t look like he was raised as a Buddhist, but what do I know).
We continue in the cocoon of the sad and hilarious, the - “what is to be done about it”- mode of conversation. We’re speaking at a pace that doesn’t allow for pauses. We can’t help but top each other, like we're falling in love.
“I just feel like it’s a bit overwhelming.”
“Sure. It is. But when I don’t do everything? I can really feel myself slipping. So there’s my choice."
And at this, I get the sense that I should abandon the conversation. There is something about it that feels wrong, a compelling free-fall that’s not disciplined or prudent.
A young woman, Abigail, breaks our reverie.
“Did I hear you say you lived in San Francisco?”
Abigail is twenty (or thirty?) She has long braids and a round face with a rash. She wears corduroy shorts over black tights. When she moves, she reminds me of a stitched together doll filled with sand. But when Abigail speaks, she is modern and confident, her irregular body is a minor inconvenience.
“Hey guys, so sorry to interrupt, I couldn’t help listening. I so identify with feeling (the fall) when I’m not giving it one hundred percent. And I think I heard you say you were from San Francisco? I’m moving there soon, and would love to get some names of doctors and clinics?”
This all feels familiar. Like I’m at an audition waiting-room and Abigail is asking for the name of a decent headshot photographer.
Ellery scrolls through his (small computer phone device) to retrieve the relevant information as Abigail continues...
“And I know just what you mean by regular medicine. I had to get off it. I’ve had rheumatoid arthritis my whole life. I’ve always had it. It’s always been a part of my life. But things have really turned around since I started seeing this homeopathic doctor on west 49th. He's amazing.”
Abigail asks Ellery if he wants the homeopath's number, Ellery looks uncommitted, so I butt in ... “I want it! I want his number!”
She hands me his number and we introduce ourselves and we’re all feeling cozy, like we’re handing out business cards at a cocktail party.
Then Abigail says (looking at me) “So, you have MS too.”
And,
I decide to risk it. I decide to expose myself. Because after all, we’re ALL sick here. We’re all brothers and sisters on this scary boat ride. Right? We’re all united in our untreatable illness.
So... I show what I’m playing with, I reveal myself and say,
A- L.S.
I have A - L.S.
There is a marked change in our triangle. Ellery (in an instant) reassesses our conversation. Abigail has a look... a look like I’m marked for execution tomorrow.
This went all wrong (I think). They were supposed to toss it off. We’re in this together. Right? Ellery? Abigail?
Abigail retreats to her seat and I try to win Ellery back.
“I mean, it’s just a name. I don’t KNOW that I have this... Mary Baker Eddy says not to identify with the names of diseases. She wrote that people try on the names of diseases like their trying on the latest fashions from Paris.”
“Yeah. I mean, I guess you need the name to get around, to get your insurance and stuff but, you’re right. Naming it can be a problem.”
I can actually feel myself chemically altered by their reaction, and as I step into the next room to pay for my treatment, I vow NEVER to tell anyone the name of my suggested disease again. The look of (fear and sympathy) are tiny drops of arsenic in my IV.
Later, Ellery passes me at the check-out station and genlty squeezes my shoulder, a show of support, like I got my diagnosis an hour ago.
Abigail too seems more interested in me.
As she passes me at the cashier, she asks for my name again, like she didn’t quite realize she was talking with such a real player.
And Ellery and Abigail can step back out onto the street, relieved they are not me. They’ve gained perspective. Ellery will go to an art show opening tonight in DUMBO or NOHO and drink coffee (his drug of choice, he told me). Abigail, achy but mobile, will grab a cab. She’ll taxi home and begin to make plans using the internet: craigslist San Francisco, Man with a Van.
And I will think (only) of the next fifteen minutes.
I will claw my way to my battery operated bike.
I will bike to the vitamin store on 24th and Seventh Avenue.
After I lock up my bike, I will flag down a random stanger to guide me across the sidewalk to a wall so that I can steer myself toward the store. Instead of planning for any future, I will buy any vitamin that I can to prolong my life, any antioxidant so that I might live another fifteen minutes.
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