I AM YOU

I call Phoebe.

Restaurant week begins Monday. We have reservations at Tocqueville.

http://www.tocquevillerestaurant.com/

Phoebe seems "off" on the phone. I wonder if this dinner is a "poor me" dinner/obligation.

Phoebe explains that they've been slow getting back to me because Adam's dog died.

We'll talk on Monday.

I spend the afternoon with Siska (my old cleaning person) going through paperwork. I'm not dressed. I sit in my boxers and a stained sweater. I haven't washed or combed my hair. I order Siska about.

"Put this with the medicare file, put that with the screen actors guild file, put all these in a pile of doctors who seem to be suing me"

I lose my patience with Siska. When I ask to put a broken watch away in a dresser drawer and she puts in it the secretary, I sit helpless, steaming. I am intolerant of poor listeners even though I'm one myself. I find it maddening I can't stand up and put everything away in a mad rush. I must remain patient. The smallest request requires description and language.

After Siska leaves there is still time to pick up my bike from the repair shop on the upper east side.

I don't want to go. It's getting more and more precarious for me. Just walking around is a big, embarrassing, hassle. It's getting worse; my lower back, my mid-back, my hips.

I have changed. The color of my person has changed. I am not the same color. When I'm out, I resent the attention my gait, my canes, brings. My voice- a nice little finishing effect for unmitigated pity . The hassle. The frustration. A part of myself has disappeared. The public part of myself has disappeared.

I call Mattie to ask her if she thinks it's wise for me to go to the bike store alone.

I go to the Patients Like Me website.

Another PAL (person with ALS) is "with the angels", I read.

This prompts me to pull some pants on and go get my bike.

What's the worse that could happen? I could hurt myself?

I should preserve myself for all the good healthy times ahead?

When I get to the NYCE Wheels, Mark, the guy I deal with there, is alone. It's dark and cold outside but inside the store shimmers with optimism- so many glamourous, gorgeously crafted bicycles. Some of them fold down small enough to be put in the overhead of a train or plane.

I want to own one of these magically folding bikes. I want to fly to a cool city, unfold my stylish bike, and then ride it to my hotel. For this to happen, I will need a cure for my rare disease or my rare disease will have to come to an end.

But my brain, my wants, my outlook, doesn't function... like it used to. I simply don' t think too hard about these things. I let them float by (these images of unfulfilled hopes, unrealized scenarios) I let them glide by with out one, not one catching, snagging onto my working mind.

I only think about the next fifteen minutes. (Did I bring my gloves? Can I walk the bike to the street? Does Mark have any other disabled customers? I'm a little hungry. Have a swig of water).

The ride home is precarious.

I get stuck and fall against a car at Park and 86th. There is a comely couple getting into the car I am pinned against. They see my canes poorly tied to the back of my bike. I am in a position where I can't move. I will have to get off the bike. Getting off the bike will require a lot huffing and puffing. I will have to lean hard against the car and then use my arm to lift each leg out from the bike. It will take patience and skill. And then, once I am done, I will have to walk the bike for some distance until I can mount it again. This is becoming more and more difficult. The danger of being disabled and riding around in this city is becoming clearer. I feel foolish to be on a bike.

The woman of the comely couple asks in a focused, measured, adult, searching, overly polite voice,

"Sir, do you need some assistance?"

"No" I say, but I say it my muffled voice, my tired, unclear, unfocused voice, "no, I don't need assistance."

"Sir" she says again, ignoring my mumblings - maybe she thinks I'm drunk or mentally disabled - "Do you need some assistance?"

The young man walks around to my side of the car with concern and responsibility.

"Can I hold the bike for you sir?"

His measured politeness is insulting.

How do you explain to the frightened pretty couple that I am you. I am you but I have ALS. I have ALS so I use an electric bike. The bike has been broken for a month so I haven't ridden it and each day that I haven't ridden it I have progressed. My legs and feet and lower back have grown weaker. I'm just now trying to figure out if I can ride the bike. You would do this too.

I just got the bike back from the repair shop and I'm having a little trouble staying on the bike. I am you but I have ALS.

But instead I say, "No, I'm fine. I'll be fine. Give me a minute."

They stare, balancing in their polite constraint with the worry I might put a fist through their windshield.

I get away and walk the bike across Park and remount it (with some effort) on the other side.

I ride home through a dark Central Park. The glowing skyscrapers hovering over my ride - always a pleasure - always reminding me to be grateful, thankful to be living in this gorgeous city. And to be grateful that I am blessed to be the kind of person who prefers to bike home on a cold January night, even with ALS.

afternoon apartment

afternoon new york
Originally uploaded by Charlie Roberts

AROO

AROO
Originally uploaded by Charlie Roberts

Curtis

Hey,

I felt energetic swimming tonight!

I feel good tonight! Connected to my legs. My breathing deeper. My head calmer.

Last night, I went to church. Susan came along. I think she was glad to go but a bit suspicious. The testimony was cool but a little scary, she said.

After church, we walked around the corner to the Broome Street Bar.

Broom Street Bar

It was nice to be out... watching people unwinding from work, grind dancing to 80's music.

I spent the afternoon at the Cupcake. I ran into a friend, Curtis (a painter, a wealthy artist). Curtis also likes to spend his free time at the Cup Cake. His studio used to be nearby but he recently moved to the far regions of Brooklyn.

We spoke of a project he's been developing for years.

Cutis's Project

I never got up from my seat. My canes were tucked away. Curtis never discovered my disease of the week.
That was a pretty neat trick.

-Charlie

PENSION

I'm sitting in the Cup Cake writing my blog when my cellphone rings.

It's SAG Pension calling. There are more forms for me to fill out.

I (reflexively) try to make my voice sound more pathetic, closer to death, in case they're not buying this whole fatal disease thing.

(ridiculous)

SEX AND DIRTY LAUNDRY

I meet Phoebe at the Paris Movie House on West 58th to see "A Single Man".

I know the Paris well because years ago I did extra work for a movie called "The Pickle".

"The Pickle" was directed by Paul Mazursky and is noted for being one of the worst grossing movies of all time.

I spent one week alternately playing a bellboy at the Plaza and an alien (yes, from outer space) - you'd have to see the movie.

When I walked around the Plaza in my bellboy costume, people staying in the hotel would try to flag me down and I would ignore them. This delighted me.

When I played the alien, I wore tights and a bathing cap. I remember it was freezing and they used smoke machines. They made a little space craft and trailed it in front of the Plaza. (You know who was also an alien in tights and a bathing cap? That guy from the Daily show, Aasif Mandvi. We were aliens together. I still have his phone number).

Anyway, the holding area for "The Pickle" was in the Paris Movie Theatre.

I get to the Paris first and Phoebe and I text each other.

______________

- Still in transit. If u get there first don't hesitate to go in and grab seats & i'll meet u inside

- Okay. I'm going in. C U in there ;-).

- Do u want drink or food? My treat. I need a snack.

- Pop corn!

- I downstairs. Food?

- Yes.

- Middle.

- Back.

- Audience right.

- no butter?

- K!

- No butter good 4 me.

__________________

Phoebe arrives looking healthy and shiny and (in love). Maybe.

She's wearing a new, tailored, winter, wool coat.

(The new coat! - like the new haircut or the winter tan -always a crowd pleaser).

*Note to Charlie - splurge on a new winter coat! Look good- feel good.

"I like that coat" I say.

"You do? Good. Because I bought five of them over Christmas... three in New York and two in Michigan. I still have to return two of them. You have no idea how stressful the whole thing was. It's really my mother's fault. She's always had this thing about making sure you have the right winter coat. So I got a little out of control. I mean, it's kind of reasonable. You only buy a winter coat every couple of years so it has to be good. Do you really like it? Adam (Phoebe's boy friend) is going to kill me. He thinks the whole coat situation is nuts. He won't even let me mention the coat. We don't talk about the coat."

(I'm with Adam on this. This really must be a crazy girl thing. Still, the craziness paid off. Phoebe looks rich and tailored and radiant).

The movie starts. We eat our popcorn.

"A Single Man" is lush and gorgeously designed. I pined for the table lamps, bow ties, and vintage cars. I'm not sure the director, Tom Ford, fairly represented the book. But Collin Ferguson is compelling. The art direction alone is worth it.

The movie ends and I grab my canes.

"When did you get these canes?" Phoebe hasn't seen me stand up yet. I got here first. As a matter of fact,

I haven't seen her in months. The last time I saw Phoebe I didn't have any canes. I feel caught.

Being able to walk with you fellow human is an unspoken entitlement, a privilege no longer granted to me.

I remember helping my friend Janet when she was sick with cancer. One day I brought her to her hair cutting appointment. She was too weak to walk down the street or get a cab by herself so I raced around and did it for her. I was an eager monkey. I was everywhere. Look at me walk and run and crawl around and grab the cab! I'll help you! Look at me!

I notice people get more of a spring in their step as they assist me through a door or into a cab. Sometimes it's too much. Overly solicitous. I grimace a pale "thank you" but I want to incur "bug off".

Phoebe and I decide to get a drink at the Time Warner Center.

We grab a cab for the short distance to Columbus Circle.

When we get there, I can't (step up) to the sidewalk. It takes effort. This is embarrassing.

This is unexplainable. We don't talk about it. What is there to say?

I cane my way though the grand lobby to an elevator. We ride with two gay men in mid fight, a catty fight. They are performing for Phoebe and me (I think). Maybe my plain convalescent, my canes, induces a release of bitchy camp. I enjoy it.

We go to an animated interactive wine bar called CLO on the fourth floor. I've been here before. It's fun. There are hundreds of wines to choose from.

I pick a red, a 2007 Domin L2 Touriga Nacicnol Blend from Dover-Portgol.

"Bold and Beautiful. Deep and dark with chunky fruit, sweet vanilla, a mouthful. You can tell this wine was crafted by someone who grew up on the purple wines of Port."

I really like it. The glass was only $7. When I later googled it - it came up in an article "Great wines for under $20".

Adam (Phoebe's partner) joins us at CLO. Adam is a major foodie and wine lover. For Christmas, Adam got a gift certificate to Per Se. This kills me.

I think Adam said his favorite wines were in the Grenache family from Italy or France.

He told me he liked his wine "to stink of sex and dirty laundry".

I like that.

LYME DISEASE PATIENT WENT TO INDIA

Hello,

I am the patient from CA who went to India for embryonic stem cells. I never post on these boards but I had heard about this thread and thought I'd share my story.

I am doing amazingly well. I've had chronic Lyme (Babesia and Bartonella) for 7+ years and my complications included neuropathy, arthritis, tremors and twitches, brain lesions, cardiac problems, chronic nausea, etc.

Post stem cells, all of my pain is gone, I am off all narcotic pain killers, all tremor medication, all heart medication, my brain lesions improved greatly (as measured by SPECT scans), my food allergies are gone, and the list goes on. I'm finally able to be off of antibiotics for the first time since my diagnosis.

I believe this is possible because of my previously aggressive antibiotic treatment and the new improvement of my immune system with the stem cells.

Before deciding to go to India, I failed all treatments that I tried (including almost 100 hyperbaric oxygen sessions). I feel that antibiotics did a good job to lessen the bacterial load, but my body was so deteriorated from the disease, something needed to repair it from that perspective. Embryonic stem cells did that for me. It is like I am a new person now.

Since I was the first patient to go through this, we don't know what the future will hold. But, so far, I've had a six month stretch of health and that's six months more than I ever thought I'd have again in my lifetime before I went to India.

The doctor's technology is unique as she is using ONE donated embryo to treat and endless number of patients. She is the only one that I'm aware of in the world using embryonic stem cells in human application (she just filed a patent). Her stem cells are 100% pure (meaning no chemical, animal feeder cells, etc.).

I can't say the treatment is right for everyone but it is thus far, the biggest blessing of my life. I hope this information has helped those who are interested understand it a little better.

It is not a cure for Lyme (stem cells won't kill bacteria) but I believe it will strengthen the immune system to better cope. My personal opinion is that much of a Lyme patient's pain, fatigue, etc. after they have had proper treatment, is not necessarily due to active bacteria but the devastation of what has happened in their bodies over the years (degeneration of nerves, muscle, etc.).

I'm always available for questions if anyone would like to know more. I'm going back to India in July for 3 weeks for a booster series (I was there for two months the first trip). I blog at www.healthcarehacks.com and update often for anyone who would like to follow.

Many blessings,

BIKE (Taliah Lempert)

St. John the Divine

St. John the Divine
Originally uploaded by Charlie Roberts

West Harlem

West Harlem
Originally uploaded by Charlie Roberts

STEM CELL might be effective

POST FROM PLM

When Farmington resident Derek Van Wyk took off for India last year to receive embryonic stem cell treatment for ALS, a progressive neurological disease, he couldn't write, brush his teeth or do most other daily tasks.

Though not quite wheelchair-bound, the 36-year-old father of two had been told it was just a matter of time. When Van Wyk was diagnosed in 2005 with Amyotrophic Lateral Sclerosis, also called Lou Gehrig's Disease, doctors said he had three to five years to live.

This week, just two months after returning from nine weeks of the treatment not available in the United States, Van Wyk said he is stronger, sharper and "can almost keep up" with his kids, Leah, 6 and Ryan, 4.

Van Wyk, who also has Lyme Disease, is by no means cured. But he is "almost fully
independent," he said, and this week was given the green light to resume driving.

He is also offering valuable moral support to Dan Herbert, a contractor from Naples battling ALS.

Herbert, 48, hopes to go to India soon to receive the same treatment at Nu Tech Mediworld, a 20-bed facility run by Dr. Geeta Shroff in New Delhi.

Van Wyk said the treatment involves several days of multiple injections of millions of stem cells. "It pretty much took its toll on me," he said. "I was tired. I regressed. Your body has no idea what to do with these stem cells," he said. "But once you get over that, you feel great."

Herbert first noticed symptoms in 2008 during a family vacation in Florida. Suddenly, he couldn't lift the front part of his foot as he and his wife, Sue, and their kids, Christopher and Sarah, walked to a pool. They later learned the dramatic muscle weakness was tied to ALS, though it took a full year to confirm the disease.

It was 14 months ago when he did his last construction job, said Dan from his home, where doing day-to-day tasks are becoming more difficult. "Ordinary, daily activities - you take those for granted," he said.

Still in the early stage of the disease, Dan can walk up stairs and enjoy simple pleasures with his family, like eating a meal or doing a jigsaw puzzle. He has lost 35 pounds and battles with the mental and physical ramifications of having a terminal disease.

His family and friends keep him going, he said.

After learning of his plight, supporters rallied, forming a page on Facebook called "Friends of Dan Herbert," setting up a donation fund at Five Star Bank and scheduling a fundraiser. The treatment will cost about $40,000, with additional expenses for travel and related needs.

Sue said the family is hopeful. On Sunday, she reached Dr. Shroff by phone.

"She was waiting for my call," Sue said. The doctor's message: "Get here as soon as possible."

TONY IN THE AFTERNOON

I cab across town to Patient's Medical on 42nd and 2nd.

Patient's Medical looks abandoned today. The lonely receptionist sitting in the dark (to reduce energy bills?) guesses I'm here for an IV and tells me to go right in.

The halls are empty. I don't even see a nurse.

When I get to the IV room, Tony (the rock musician from Park Slope) sits alone in the middle of the long room talking on his cellphone. I'm happy to see him. I meekly wave and he smiles back (an impish rock'n roll grin) but continues with his call. I choose a recliner directly across from him. The recliner has a massage option. I turn it in on and listen to Tony talk.

"Well, I was the lead singer for the number one hard-rock band out or Denmark... "

I pull out my Kindle and look for my reading glasses. I've forgotten them. I can't read without my glasses.

This is why I can't get up from the couch (I think). Everything I do requires the management of things: glasses, sun glasses, leg brace, cane 1 and cane 2, iphone (powered up) battery for bike (powered up) cameras, kindle, notebook, pen, vitamins, medication, FOOD, water, wallet, shoes (shoe horn to get them on) which coat, hats, gloves, scarf. It's becomes a disorderly world of misplaced props.

Tony is off the phone.

"How are you, my friend?" he asks like we share a cubicle at work but haven't seen each other in months. I've only met Tony twice.

"I'm good. I'm pretty okay... you know" I say loaded with unspoken hopelessness. "You're getting a drip!"

"Vitamin C " Tony beams back. "Hey, I don't remember you having two canes before."

"This is true. The last time you saw me I wasn't even using one cane. But... that's how it goes sometimes" I say, meaning... meaning nothing really, meaning those are words to put in the place of a sentence with actual content).

"You know the thing is Tony, what I've got is degenerative. It gets worse. So here I am!"

Tony continues to grin, to stare at me. It's his turn to talk, but Tony doesn't say anything because Tony has nothing to say. So I start.

"I heard you mention your band. What band do you sing with?"

"Well, I used to be lead singer for NITRO. They were big in the eighties. Came out of Denmark.

They're still going strong but I left the band and am working on solo albums."

(Later, I googled Tony. He HAS had a pretty big career. NITRO isn't really the name of his band).

"And I just got a deal with Pizza Hut. I'm singing their new jingle. The campaign is supposed to begin in February. I'm really crossing my fingers. The last commercial I sang on, I made 75 thousand dollars."

"That's what I used to do. Commercials!" And as soon as I say that I know it's a mistake. I've set myself up to talk about commercials, eliciting feelings of lost time, regrets, failure for not being more successful.

"Name one or two spots I might know you from."

"Well I did a lot. I've been doing them since I was a kid so there have been a lot of them."

"You know... I feel like I've seen you before. You have a face that recognizable, like I've always known you."

"Maybe it was from Good & Plenty or GE refrigerators, Ponderosa Steak House, or Coca Cola. Over the years, I've plied my face and voice into the collective unconciousness."

Just then, a male nurse, Nabin, sets me up with my Glutathione push. Tony watches from his own recliner, his large bag of vitamin C hanging from a hook. (When Tony goes to the bathroom, he pulls along his bag of vitamin C on wheels like he's getting chemo).

Nabin sticks a needle in my vain, hooks it up to a little hose, and then hovers over me holding a small bag of glutathione which he slowly pushes into my vain. I ignore him, like I'm getting a manicure or a shoe-shine.

"Tony, may I ask you something? Why do you get these drips? You look pretty healthy to me."

"I had cancer, thyroid cancer. Had it removed last year. If you're going to get cancer. It's a pretty good one to get. It's pretty easy to get rid of. I'm okay now, but it got me paranoid. So I'm trying to get as healthy as possible. I really want this to be my healthiest year ever. I'm going for perfect health. No wine, no coffee, I'm going to juice three times a day. Eat right. Perfect health."

I'm so glad Tony put it that way. Perfect health as an attainable goal... like you're going for a six pack or perfect skin or losing exactly fifteen pounds. Perfect health as a simple attainable goal.

"Well you look great."

"Do I?"

"You do."

Maybe he does. He actually he looks like he's been through the ringer, a little. His nose looks weird, broken, or put back on in a clumsy way. He has deep pock marks on his pale, pale skin. In profile, his face sags and has odd parts that don't really come together to make a unified face. But head on, when Tony smiles at you, he emanates youthful rock and roll seduction. The matching animated brown dots he has for eyes convey, "wanna smoke some dope?" His body is so lithe it's barely present. He accentuates this skinniness with bone tight clothing and a big shag hairdo.

"Tony, are you an ex-partier?"

"Oh yes, you could say that. You could definitely say that."

"Me too."

It's just Tony, me and Nabin. There are no doctors around, just two middle aged dudes sitting in an empty room in midtown getting hooked up to our drugs.

The male nurse gives me my B12 shot and I ask about the Chelation.

How much is it? What are the risks? Has anybody died from it? Do you trust the hair testing?

Why do I need a urine test? Should I do this?

Nabin tells me there is already an outstanding order to have my urine checked for heavy metals but this really involves what would be my first session or chelation. I am scared to start the chelation because it strips you of minerals and vitamins, minerals and vitamins that are needed for proper function. Chelation can exhaust you and make your body and head ache.

"It's up to you." says Nabin. "You know everyone is different. Some doctors think the hair test is ineffectual, some swear by the urine test. Every doctor has their own ideas of what they think works. And every patient is different too. What works for me might not work for you.

We have a patient with Parkinsons who signed up for the hyperbolic oxygen therapy. Her doctor told her not to do it. He told her it could hurt her and that it was a big waste of money. She did it anyway and at first she shook so much I had to hold her down. By her eighth session she really started to improve, the shaking went away. The treatment has been very successful for her. Then her doctor changed his mind. Her doctor told her to she should keep doing the oxygen treatment, never mentioning his original opinion, like he had been recommending it all along."

I ask Tony if he's done Chelation.

"No but I'm going to. I started to do it and it made me really week. So I'm flying to California to go to clinic to get my body ready so that removing all the metals won't exhaust my body. I had my amalgams removed. I'm thinking about having my root canals removed. I just got figure out what to put in their place. Being a singer and all, I can't just leave a gaping hole there.

"Go on and try it. It's not going to kill you. Maybe it will make you tired.

I think you should do it!"

I half expect Tony to add "have some fun, live a little, you only live once!".

But I can't start it without mentally preparing. I decide to do more research and maybe go back the next day.

I gather up my things, my coat, my kindle, my phone, my magazine, my canes.

As I pack up Tony asks, "Hey, how's that Glutathione? Is it good? Do you feel anything?"

"It does sort of give you a kick, an edginess. Yeah, I can definitely feel something."

"Hey Nabin, how come I'm not getting the glutathione, how much is it? Can you set me up with a little glutathione after the vitamin C?

I'm on my feet with both my canes. I'm off to make the anxiety inducing payment at the cashier.

I turn to Tony.

"Well Tony, it was great to see you again."

"It was a pleasure to see you as well, my friend. I'm sorry, I feel bad. I can't remember your name."

"Charlie, it's Charlie Roberts. Don't feel bad. I'm terrible with names too. It just so happens that I keep a blog and I mentioned you in an entry, so when I walked in, I saw you and I was like, "Oh there's Tony!"

"Oh, Cool. Well have a great evening Charlie."

"You too Tony."

"Oh and Charlie? Don't mention my real name or the name of my band on your blog.

I don't want anyone to know I was here."

"No problem."

15

(I rewrote this entry and read it in a writer's lab over the weekend)

"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 a long hallway, making a left at the very end into the IV room. The IV room is nearly full, so we sit clumped together at the far end, by the door (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, I learned, is a rock musician from Park Slope and comes to Manhattan for a weekly IVof vitamin C. He looks (to me) like he's recently escaped the dark world of drugs and rock and roll, but today he grins and preaches the good word of vitamin C and an all organic diet.

We sit. I disengage.

I read my book, a book about the power of antioxidants; about glutathione, coque 10, alpha lipoic acid, and vitamins A, C and E. I try to focus, but this guy Max pops his head though the door and starts talking to the blond guy sitting across from me. Max runs the supplement store at the clinic. Max bugs me. Last week, I requested a supplement from Max. I was told by the nurse to speak to him about getting NAC, a form of glutathione before it becomes glutathione.

“Are you Max?”

(lost at his computer)

“Um... What? Max? No... I'm not... wait. What? Yeah, I’m Max.”

Max couldn't find the NAC. The nurse had to go into Max's vitamin store and retrieve 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"Max says (as in the light hang - I think). They talk "DUMBO". They talk "NOLITA". They use the work "dude" (a lot). They knock their knuckles together in fraternal 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've become irate. So I decide to change the situation. Instead of silent rage, I’ll join in! I push my heels into the floor and say,

"Are you guys talking about a show?"

But my voice is too weak so they don’t hear me. d

After Max leaves, after my Glutathione and B12 injection, I try again.

“Hey! Are you guys actors?!”

Blond guy is startled.

“What?! Me? An actor?" His eyes widen. He clears his throat. "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. All that discipline? No, I could never do that.”

He seems flattered to be mistaken for an actor and this humility gives him an air of integrity.

The fist bumping dudeness recedes and a likable candidness replaces it.

“I thought I heard you guys talking about a show and a tech... hanging lights?”

He smiles.

“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, I get it. 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 absolutely flummoxed. He darts (in and out) of uncertain smiles, but keeps his focus on me.

His attention encourages me. I'm now "in" with Tony AND Ellery.

“Hey 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 confessing 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."

Ellery looks remarkable healthy and put together for someone sleeping away his life. He's wearing clean topsiders, pastel geometric socks and an ironic madras preppy shirt. It's not an actual look, it's a comment on a look. He looks great.

Maybe Ellery 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 was stuck 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 the website "Patients Like Me" I offer. "It’s kind of like Facebook, only with diseases. It’s great for research.”

“Thanks. I’ll 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 rather be out there... doing... know what I mean?”

“Yeah, I do, but I’m new to all of this so 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 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 and youngish 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 check my watch. I fiddle with my iphone. 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 myself from asking more questions.

“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 tank. Oxygen rocks" (like he’s talking about mescaline).

Compared to Ellery, I'm feeling like a slacker, so I come up with a list of my own, practical, less expensive, therapies.

“Well, I’m just trying to eat organic and...”

“Organic, yeah, of course! 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.”

“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 of water filled with toxins, letting them seep into your pores... I mean, I guess I think of everything but I have all my water delivered and then, I purify it again, I put some quartz in it to make sure it’s okay.”

This is unbelievable. I thought I was going overboard avoiding wheat. “ Where do you get the quartz?"

"San Francisco. They're years ahead in the world of healthcare. All those hippies."

"It just 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 was younger, I lived in California and here in the lower east side. Both places had areas of heavy construction, in the buildings I lived in, and all around me. The dust from the construction, the metals and poisons ... I really think it did me in.”

“Wow" I nod, my face a mask of regret, "I actually moved into the building I'm lving in now when it was under construction. They hadn’t even finished dry-walling. I was a mess for months.”

“You got to watch out for that stuff" Ellery adds ruefully.

“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 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 to investigate. It’s hard to know if any of them are 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 our discourse in the the sad and hilarious, the - “what is to be done about it”. 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 overwhelming.”

“Overwhelming. Sure. But when I don’t do everything Charlie? When I'm not totally committed? When I'm not giving it two hundred percent I can really feel myself slipping. So there’s my choice."

At this point, I feel like I should abandon the conversation.

Something about it that feels wrong, a compelling free-fall that’s not disciplined or prudent.

And as I pause, as I retreat, a young woman invades our alliance.

“Hey, my name is Abigail. So sorry to interrupt, I couldn’t help listening. 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 doll filled with sand. But when Abigail speaks, she is modern,confident, her irregular body a minor inconvenience.

"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 real soon, and would love to get some names of doctors and clinics?”

This all feels familiar, like I’m at an audition 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 mainstream 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, I introduce myself and we’re all feeling cozy, like we’re handing out business cards at a meet and greet.

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.

This went all wrong (I think). They were supposed to toss it off. We’re in this together. Right? Ellery? Abigail?

But you see, in the remote and cozy community of illness - I'm in, I'm included but only to a point. My disease is fatal. Their diseases? Not so much. I am an outsider. I am in the unenviable position of being the most pitiable. Even in the world of heartbreaking disease, there is hierarchy.

Abigail retreats to her seat across the room 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 theyr'e 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 glutathione IV.

At the check-out desk, Ellery 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 to 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 a future, I will buy any vitamin I can to prolong my life, any antioxidant recommended, so that I might live another fifteen minutes.