(zoom)

The new receptionist (at my alternative medical clinic) notices I'm reading "The 7 Daily Habits of Highly Effective People" and says,

"That's my favorite book!"

Wide awake and gung-ho (like a dark Reese Whitherspoon) she looks me straight in the eye with ramrod self assurance and asks,

"Hey! Do YOU want some water?"

"uh... sure,  I'd love some... water."

She walks with bounce and purpose to the nearby water-cooler as I tell her,
"I read it years ago but I just rediscovered it. It sort of integrates everything I've read in all the self-help, spiritual and religious books I've been reading."

Handing me my styrofoam cup of water... "That's EXACTLY how I feel about that book! That's EXACTLY right!" like we've been friends for years and I nailed it.

The sweet, ironic, black guy who runs the copy machines also joins in.

"I really like that book too."

(I have an uneasy inner moment. This is MY book. This is MY book that will save ME. You're the copy guy and you're the receptionist - you've both read this book (love this book)... but... you're not saved... you're a receptionist and a copy guy).

During my Glutathione IV (which sets my teeth on edge) I sit in a recliner (in a large room filled with recliners and hanging IVs) and call Merrill in Utah. I'm short with her on my cellphone, partly because of the Glutathione and partly because she often lectures me on my singular ways. She wants me to call a woman I barely know and get her to drive me to Trader Joes's. "Why should I when I am perfectly able to do it myself." I argue. "There maybe a time when I actually need to make those calls but not now (and not ever)."

I hang up with Merrill for my B12 shot. A pinch and my male nurse seems worried. My blood pressure seems high to him.  He checks my blood pressure and to distract myself I introduce myself to a woman sitting in an identical recliner across the room. I introduce myself to Nora, a black, older, regal woman I've seen in the clinic plenty of times, a woman who often seems in a grateful haze and always seems to be holding court among the IV users. I thought she might be a famous stage actress but today I'm not sure.

She is talking to a younger black woman.  She talks about her son at HOWARD University. She talks about gulf. She says something like "and I was the first black woman to play at that golf course".

I butt in. This is not like me. I'm defended, passive... but these days the the possibility of being offended or hurt are pretty much nil.

"I'm sorry what's your name?"

"Nora"

"Oh what a beautiful name!"

"And yours?"

"Charlie"

"Charlie. You were here last week... right? I've seen you before."

"Yep, I'm pretty much a regular."

And through her sophisticated dreamy gaze she says,

"I was talking to a friend about you last week. I was telling them how precious and handsome you are."

I turn fever red ... and since I have little couthe or flexability in my responses I say, "Well, not anymore, I don't feel that way anymore... ha, ha." But she keeps her eyes on me as I sweat and flail about like she's Ann Bankroft in "The Graduate."

When I leave Patients Medical. I get back on my bike and I fall on Second Avenue.
A young woman, Jody (short and athletic) stops.

"Do you need help?"

"Um, yeah I do."

An older woman also stops and asks if she can call an ambulance. Whenever I fall, there is often an older woman who wants to call an ambulance. Like it's the one number they've learned on their cell-phones and they want to use it.

"Please don't call an ambulance! I don't need an ambulance."

The older woman looks dubious but lets Jody take over.  I give Jody my usual spiel, weak legs, used to biking, and so on.

She manages to get me on my feet and tells me  "you shouldn't be biking around the city. It's too dangerous". We are face to face as she mounts my front wheel to keep it steady so I can get back on the seat. Jody (I learn) is perky and young and teaches arobics. She has a New York accent. "My brother just got hit by a car on the island. Even I know better than to ride a bike in the city."

"Right... well, this is the only way I can get around... so... thank you so much ... here I go."

(zoom)

I bike to Union Square. The sun is intense today. I find a post near an African outdoor vendor (?) selling glittery belts, jeweled gloves, and IPOD covers. He comes over and helps me lock up my bike. He is serious has a sort of instant integrity about him, like Morgan Freeman. He doesn't look me in the eye, he doesn't need to, he understands me, knows just what to do. We barely speak.  I hand him my bike seat to hold while I shop. We are kindred souls.

I stagger to the Trader Joe's. It's too much for me.  I need a cane now.
I have to paw the buildings to get there. The palms of my hands are black.

I buy $150 worth of fun, organic food and have it delivered.

When I return, my kindred soul sees me trying to cross the sidewalk, he sees me clutching a building ready to cross the sidewalk to get to my bike. The sidewalk is crowded. My kindred soul yells "Get out of the way!  He needs to get through!"

And I stagger across through the temporary parting.

I unlock my bike and my kindred soul takes over without asking and (silently) sets it on the street ready for me to mount.

I climb on, steady myself and say to him, "Can you believe this?"

And he says "that's the way life is."

I bike away.

(zoom)

A STUDY OF MY BIKE

MORE WEEDING

I like Christmas. But when my sister spends the day helping me weed out my stuff, I pare down my decorations down to the size of two small shoe boxes. More CDs are pulled. Polo shirts that I've had for ten years... gone.  Old automatic cameras (cheap give- always from the nineties) these go too.

I pull out boxes of sheet music and silly musical theatre scores. They're expensive but they're not right for me anymore even if I could still sing.

As we're pulling out music, photo albums are un-wedged from the the shelves in the bottom of the 19th Century secretary my parents gave me (from my great grand parents house in Janesville Wisconsin).
From these shelves, I find the album of photos I took the day of 9/11.

My sister takes a break. She sits in a club chair and goes through the album carefully, with the kind of focus one might have for a never seen High School year book. There is grim attraction.

As my sister gently pages through the book of photographs, I rattle on about my IKEA experience.
I'm about to tell her that I think the key to IKEA, the key is... as my friend Olivia suggested, the key is to master the catalogue.  There are no whimsical impulse buys at IKEA. It's all strategy.

My sister is not listening to me. She is deep into the images of the photographs.

"Charlie, this is intense."

"I know... right?"

"My G-d, where were you? Is that town hall? Were you right by Town Hall?"

"Yeah,  I was like blocks away..."

In the photos, everyone is wearing masks. I am not. - (I'll be fine. I don't get health problems. My body is perfect).

"It wasn't like I was in a cloud of smoke. I wasn't... I wasn't coughing. I mean, I think the cloud of dust,  I'm not sure, but I think it was moving a different way."

"Still, it was incredibly toxic down there."

(pause)

I think my sister and my mother have had conversations about the dangerous effects of being around those buildings on 9/11.  And everyone was trying to get away from the tragedy. I walked to it. I walked to it with my camera. There may something contemptible about my taking photos. Something naieve and resolute. My mother asks me again and again if I think I could have become ill from wandering around downtown  taking pictures on 9/11.

"No, I don't think so. No. I do not think that is the case." I tell her.

My sister says "I would have been one of the people who left the city after that. I just was waiting for something like that to happen to New York.  I'd get this panicky feeling being stuck for a half an hour on the D- train."

(I've never had those feelings).

"It was surreal" I offer. "I've never experienced the city like that I don't think it will ever happen again."

"Let's hope not"

"There was no noise, no air traffic. No cars on the west side highway. The population was reduced to just the manhattanites that were stuck on the island. All the bridges closed. There were no TV commercials.  I could smell a metalic smell in my bedroom. It was a surreal in a terrible way" (really- when I think about it).

________

My sister leaves me with a paper shredder, a new mat for my kitchen floor and some homemade stew.
I thank her. I appreciate this.

I bike to Church and see my friend Setterly greeting from outside the chuch.

"Haven't seen you in a while, how you doin'? she asks me as I lock up my bike.

"I'm GREAT!"

I really am.

KNOCK KNOCK KNOCK

Jackie (my sitcom neighbor) comes over with more DVDs from the library. She views them first, and then swings by my apartment to make her recommendations.

I am often shirtless in my boxers (or nothing), unshaven, the sink filled with filthy dishes, clothes strewn about, but there is nothing to be done about it.  I used to make a show of how clean I could keep my apartment. If I knew someone was coming over, even if I only had a minute to prepare, I'd make a mad dash to clean, to shine, to wipe down the counters, throwing things in closets, even pull out the vacuum, and then (like a stale I LOVE LUCY "bit"), I'd lie on the couch with a book and wait for my guest to arrive.

"Come in."

(I LOVE LUCY taught me so much behavior)

But these days, like a different hokey "bit" from I LOVE LUCY", I have suddenly gone from middle class cleanliness to the hillbilly world of "Dog Patch".  My new name for my apartment, DOGPATCH.

When Jackie comes over with new DVDs, she couldn't care less about the mess.

She definitely doesn't want to clean. (I asked).  I suppose she thinks it's fine as long as we get the rhythm of our daily dialogue right. And I am a willing actor in our daily show.

(OFFSTAGE) Knock, Knock, Knock.

CHARLIE  - Come in.

JACKIE - Hello?

JACKIE - Hello???????????????

CHARLIE  - Jackie?

JACKIE - It's me Jackie!

CHARLIE  - Come in Jackie... or.... wait a second.

(Charlie puts some newspapers over the naked lower half of his body)

CHARLIE  - Okay, come on in.

JACKIE - Aroo? Aroooooo? How is Aroo today?

(Meow, meow, MEOW!!!)

CHARLIE  -  Aroo only thinks about himself, Jackie. It's all about him.

JACKIE -  No, Aroo, loves you, he LOVES you!  He really does Charlie. When you're gone.  He sits. He sits in my lap and watches the door waiting for you to come home. He loves you.  Aroo, where's your toy? Where's your brush?

CHARLIE  - I think it's by the tub, I think I kicked the brush into the bathroom. Will you get it? It might be under those papers. And could you put my shoes in the sink?

JACKIE - Shoes? What shoes. Oh these. In the sink? Sure. I put them in the sink. Here it is. Here's his brush.  Aroo? Let me give you a brush. Don't bite. So handsome.

JACKIE -  I'm going back to the library. Did you finish Madame M?

CHARLIE  - M. Butterfly? yeah.

JACKIE - He was delusional, Charlie, it didn't  make any sense! About the baby. How could he think think he was having a baby. The only way he could think that is if he was KAH-ray-zee.

CHARLIE  - Well, no, They did have sex. Butterfly never took his clothes off. So Jeremy Irons just assumed, I guess, that he was having vaginal sex?

JACKIE - I've heard that you can get pregnant rectally. I think I heard that.

CHARLIE  - No...  really? I don't think so. I don't think, or I'm pretty sure you can't get pregnant having anal sex.

JACKIE - I think I heard you could.

CHARLIE-  Butterfly made it up anyway... and that's not what bothered me, what bothered me is that the actor playing Butterfly was too masculine looking. I could tell he was a man... I wanted to shout to  Jeremy Irons... "listen to that voice, look at the razor stubble! Butterfly is a guy and maybe (Jeremy Irons character), maybe, you're attracted to chinese men...

JACKIE - I didn't think so at all. I thought she was so feminine, so beautiful, I really believed it Charlie, I just thought Jeremy Irons was weird and out of his mind for thinking that baby was his...

CHARLIE  - Well, there's something there about the egos and pomposity of western men, I guess, right?

JACKIE - The pomposity of western men, yeah, I see.

CHARLIE  - But Jeremy Irons is so good, isn't he?

JACKIE - Charlie, he's wonderful, have you ever seen him in the one about the brothers. He plays himself and his brother.

CHARLIE  - They're maniacal or evil or something?

JACKIE - He's so good in that.

CHARLIE  - Yeah I really think Jeremy Irons is great.

JACKIE - Today I brought Nixon Frost.

CHARLIE  - Oh! I saw that on Broadway.

JACKIE - and here is this thing by that playwright Mam -may.

CHARLIE  - David Mamet.

JACKIE -  It's awful, so unbelievable, they all sound so phony. Do you want to see it? I think it's bad.

CHARLIE  - Yeah, you sort have to get used to him, yeah sure, thanks Jackie.

JACKIE - Here's your scotch tape, I left your change in the bag.

CHARLIE  - Thanks

JACKIE - So expensive, tape used to be a dollah, that tape from CVS was 4.69

CHARLIE  - I need to tape things to my wall.

JACKIE - Good. GOOD! then. You're getting organized. Good!

JACKIE - Alright, I'm going... It's really nice out and I got get out before the day is over... it's hot in here, you want me to open a window

CHARLIE  - Um, sure, yeah... if you can step over all that stuff.

JACKIE - Which one? This one? Yeah this one.

(JACKIE STRUGGLES WITH THE METAL BLINDS)

CHARLIE  -  Can you believe we have these horrible shades Jackie. I mean, they're HORRIBLE. And some people are paying like Five thousand dollars a month for these apartments and and they have to deal with these HORRIBLE shasdes.

JACKIE - Charlie! Don't get me started. I tell you... If I ever see Silverstein in the lobby/

CHARLIE  /You know I have,  I told you I talked to him in the men's locker room/

JACKIE  - /if I ever run into him the lobby or hallway ... I'm going to say him, "Mister Silverstein, would you live with these shades? Would you let your wife live with these shades? I really would Charlie...

CHARLIE  - They're horrible!

JACKIE  - Here's what I do... I leave the heat on and the window open. That way you're warm but your always getting fresh air.

CHARLIE  -  I guess I need to get going too. I gotta get my bike fixed. It's on the upper east side so I'll bike through Central Park.

JACKIE - Oh Central Park, that will be nice!!!... I think I'll go to Bryant Park.

CHARLIE  - You love that park.

JACKIE - Well, I don't like to get too far from home. I don't like to go too far. I'm funny in the head that way. See? I'm nuts Charlie. Didn't I tell you, haven't I told you before that I grew up in the village and didn't see Times Square 'til I was like...  twenty! Scary. No. I don't like to get too far away from home.

Well, I'll go. I better go. Do you want me to throw this away?

CHARLIE  - No leave it. I'll get it later.

JACKIE - Okay, bye Aroo. Aroo? Aroooooo!  See he loves you. He loves me too. But no more cats for me. No more cats. Okay... okay... bye.

WE HEAR: (Jackie talking to herself, mumbling to herself as she walks down the hallway) No more cats for me. I love them. But no more cats. Right? I am done with cats. No more cats for me...

WEIGHT

Hi Steve, I'm still biking (with a battery) and swimming. My walking feels like I have 20 pound weights on each foot. I eat. And I added a teaspoon of coconut oil with each meal. Tonight I realized I've lost about three pounds.

I feel like all I do is take supplements, cook, eat, etc.

What are you doing about keeping weight on?

Charlie

PS- Why are you on the public registry and what is the point of it?

_______________________________________

Hi Charlie-

I'm still walking and running (a little).  I drink a can of Carnation Very High Calorie Instant Breakfast every day.  You can only get it mail order, not in stores.  Go to: www.mddirectonline.com and order.  About $37.00 for 24 cans.  Great Stuff.  Vanilla only, for now.

Don't know why I'm in the registry, just signed up on somebody's suggestion...

Keep your weight and training up.  I really feel those two things are the secret to waiting out a new treatment.  It's coming soon!!!

Good luck,

Steve

_______________________________

Thanks Steve!

You're the best, I agree. I feel very hopeful. I feel great.

(It's the morning and I'm on my first (or second) cup of coffee, that's why I feel great).

Thanks-

Charlie

BACK TO THE RAT RACE

Hi Charlie,

Would Friday be possible for you? I'm trying to work out some scheduling things. I have to go to Scarsdale on Thursday to work with a little boy and i would rather not have the pressure of having to end our session right at 4:30.

i don't mind coming to our place, but it's your call. It serves two purposes when you come to my place: the kitties get more exposure to people. (I'm still tying to tame them!)

Are you going for your injection on Thursday?

Mattie

_________________________

Hey Mattie, 

I'm going to see a nutritionalist in CT on Friday. So I think I'm booked.

Thursday I will try to get my IV but I can try to do that in the AM?

CR

I've been peddling my bike and swimming. But that's it. 

I feel overwhelmed. Like I have to do much to do. Too much to research. Too many errands. And with cooking and cleaning. Jeeze. I lost thee pounds. Even with the coconut oil. So I will have to eat more meals. I am not a big eater.

If I could, I would just drink coffee and eat crackers.

Many take these, but I don't yet.

Low Dose Naltrexone (LDN) (naltrexone) (recommended... need a prescription)

N-Acetylcysteine NAC (I think this is over the counter)

I thought they were the same thing until tonight.

MESS UP

CAR-

Hey I haven't been writing much. I opened it (the blog). Thank you for being interested in it.

(I have to say that or I will feel like a creep).

I will get on to more writing but I'm in a complain mode and don't really feel like expressing that.

Saturday, my sister came over and took junk away and then on Sunday I went to IKEA and bought new junk.

I am in a dour mood because,
There was a mess up with some medication (really a supplement that needs a prescription) that I was on. I feel paralyzed when Doctors don't return calls or emails. And I don't want to turn on my ( little machine for chewing on anger and frustration) So I put out the calls and hope for the best.

What happened was, this place (Patients Medical - my alternative doctor) ordered the wrong supplement for me, through an online pharmacy, I needed a prescription to get it and it was sent to me in the mail. I used it for about a week and then decided to research it and realized they had sent me the wrong thing!

I called the doctor. She didn't return my call. And so I when I went to the office for my Glutathine IV, I showed them their mistake. They took me into a private room ( a nurse did) and told me they would give me half price today for my glutathione treatment today and order the correct prescription. Sleep walking my way through this whole thing, I don't dare get indignant or angry. I don't dare play that toxic card.


But Monday the doctor had not called it in. I left a message and an email and at 11 am today there is no response.

I am a disorganized and easy person, and I am also impatient. I exaggerate stories to support my impatience and ire. So I never know when I am justified in my complaints. This where soul searching spirituality is helpful.

I do have to say this. The medical world is not filled with the brightest and most compassionate. I need to wake up and be my own doctor.

CHARLIE

Research News Update from Steve

"Intrathecal Cyclosporin is one of the new protocols being developed for the treatment of ALS that I referred to in our last newsletter. While only in Phase 2 (dosage/efficacy), having succeeded in Phase 1 (safety), the intrathecal usage of Cyclosporin is, in my opinion, one of the leading opportunities to have come to the forefront in the past several years. Whereas Cyclosporin has been considered for ALS since the early 1980's and was trialed by Dr Stanley Appel in 1988 as an oral medication, it is only since its use as an intrathecally-delivered medication (injected into the spinal cord) that its promise seems more relevant. I intend to meet with Maas Biolab in December at their facility in Albuquerque to gain more information, having first become interested in their approach to Cyclosporin A through intrathecal injection (Mitogard) when meeting with them at the MNDA Symposium in Toronto in November 2007."

We hope you find this information useful and that you visit ALS WORLDWIDE frequently.

Barb and Steve Byer
September 7, 2

SATURDAY AND SUNDAY

Saturday, my sister comes over and helps me clear out my apartment.
I send her away with lamps and lampshades, a tennis racket, cds, an electric piano, a tent and sleeping bag, a used bike. We gather a mound of paperwork (I've saved receipts and tax returns for the last 20 years). We build a pile by the couch.  I am to slowly go through it and throw most of it away.

Sunday,  JD takes me to IKEA.

We drive through the Holland Tunnel to a desolate land of off ramps, factories the size of small communities, a cold treeless world and then we're at IKEA.

IKEA chills me to the core.

He pushes me around in a wheelchair.  As I'm rolled around I disappear. I am invisible.

The human need to create a quick homey world. No one has time to gather things to create a home but you can buy the look of a home for very little money if you will spend the day staggering in this windowless convoy with more merchandise than is (right or good) and it's everywhere.

Everything I saw I thought, "I could use that" but I don't dare stop and look at it or even consider buying it because IKEA never ends.

When we got to the check out line with my little sheet (I thought I lost it), I asked JD if he wanted to bag it.

"Wanna just get out of here, pretend we never came here today?"

And I kind of thought JD would quietly say and with some small shame,

"yeah, lets get out of here. I can't stay here another minute."

But he didn't.  JD is a competitor, he enjoys fighting for parking places, he got good grades in engineering school. We are not two peas in a pod. So JD perseveres. He gets us through check out.

I buy a tiny dining table, three sets of shelves, matching storage boxes, and a gimmicky red IKEA wall clock. I almost abandoned the clock at checkout but JD insisted I get it. (It was cheap and you feel like you have to buy things, you've spent the day there).

And we drive through endless broken parking lots with acres of plastic parking barriers to the pick up the loot. JD loads the back of the car and I concentrate on not letting the desolation, the existential angst of spending the day shopping for cheap plastic furniture, get to me. I think I was actually a little shaky.

________________________

My friend CAR left a message on my cell phone objecting to my thoughts on IKEA.
My friend Olivia left this email.

Just wanted to let you know that I USED to feel that way about Ikea. I still hate going there but now that I've started to master the catalogue I have started to appreciate it. It's not a defeat. It's not the same way of decorating as collecting antiques through the years but it still counts towards making your living situation better and cozier.

Me

Gabriel's Office

photo.jpg
Originally uploaded by Charlie Roberts