Sunday, July 23, 2006

Quiet Magic

An old lady neighbor who talks to me, tall i think, thin, white, bent but not quite broken over her walker short white hair long face slim in summer colors blue pants white striped top chats, about the heat.

She resembles someone. She ha a slight accent to her speech, as in been here a long time but from some other country. Her mouth moves when she speaks, her teeth white, visible, attractive.

i missed it i said, i've been inside the cool

She felt it outside feeding the birds but

"i don't have an air conditioner" she said, and i thought, that she didn't couldn't afford it,
had to economize on everything: her stockings, not buying clothes to afford it, or was it unaffordable...

i know, i agree about economizing"
She exits before me and chats gently gently
on the other side of the long-open, slow-to-close, elevator door

and i chat back gently and as it at last starts to creak close
i wish her a good evening and she says

i love you

and it is as if she is a medium because it is said without confusion or apology
it is said where i expect only goodnight or goodbye or see you soon
it is offered where i expect nothing of understanding no inkling of the
fizzling sparks that shoot through the legs, my unmet desire to leap up from the
chair that is both vessel and vehicle.

and i think it is a message and i am so startled and so touched and so grateful

and it is so ..strange but really because it didn't feel strange at all

Thank you

Tuesday, July 18, 2006

Thousand cuts

I was going to write about how the hostility of the voice message the nurse left on my cell phone hurt. It felt physical listening to it in the quiet of my night lit
bedroom. "I don’t know if we can keep calling this long distance number. You need to buy an answering machine. "

Anyway , she launches into a confusing message about taking something today uh that should have been yesterday, whenever it was that he told her it was to happen whenever it was that she finally decided to leave the message.

I resist and rail against any and all dictates that require me to expend money when none is offered. I called her in the morning to find out that she was relaying the doctor’s directions for me to take an increased dosage of coumadin. I can guess that I am the cause of decreasing levels as I have been eating broccoli, again.

She says with a voice of gathered fury,
You should buy an answering machine
I am poor and paralyzed, I say.
Well they don’t cost a lot, we just got one.
I don’t know who "we" is.

And as a matter of fact I had just the night before ordered one from eBay, after checking to see if my LifeLine would still work with an answering machine hanging off the same line.

This afternoon about a half hour after I arrived home and as I was cathetering there was a knock on the door – I can’t get to the door right now I yelled, please stop by later. Ten minutes later there was a knock on the door and I said the same thing. I was annoyed.. any/everybody who could knock on the door without having rung the outer door buzzer, lives here and so knows that I am in a wheelchair.

Unless I am in the wheelchair , I can’t get there—wherever that is, either to the phone or the door. I run into all this impatience or lack of understanding. People buzzing and buzzing the door or knocking and knocking. It was Audrey, the housekeeper, there were meds for me in the community room, she said. I gathered up garbage and rolleddown stairs to the community room. No one and nothing was there.

I had to go in the office.

N. was there looking like a peckish female Danny Thomas. Her lipstick was gone. She made me wait in silence as she waited on hold or through messages because she sat in silence for minutes on the phone. S, I wonder if my daughter and I could get a ride tomorrow between 10 and 12.

She hung up and explained my daughter is in town…..ahh I said and you and she go horseback riding? I started to tell her a story and she said cut me short saying she was expecting a conference call.

I reflectedbriefly on the time she wasted by not multitasking before and getting me my meds, which she well could have since she was on her cell phone.

So I said, I’ll cut to the chase. I was told my meds are here. I had thought to share my experience with stables and horse business in Corning and surrounds, just to connect, and decided it was after all, easier to just see her as another mean insect.

It’s easy for me to not to occupy my distress. Sometimes I can forget about the pain and even just be seated someplace vs. being stuck.

And I wonder if I’m cheating. How unhappy should I feel. How hard shouldI try.

I want to veg, to space, but am acutely aware of how precarious it all is, how little time I have…

Thanks for empathy

The short becapped man whose voice is older than his face, regards me and stammers questions.

English does not seem to be his first language and his accent reminds me of home, of New York City, of the old Yiddish speakers who would tell me their life stories when I was a little girl on the subways.

Though maybe he is just aging and words don’t come fast.

He asks how how how gesturing up and down how did this happen how did this happen, what happened.

There are no words other than what it is.
Transverse myellitis, I say.
He stares with incomprehension. I look back. There are no other words.
One day I fell down I say and I could not get up, just like that.
Just like that he asks, repeating.
Ach ! You are so young and beautiful. This is a shame.

By now there are other people and we are on the elevator. It is the most people I’ve ever been on the elevator with, but I have met all of them before except for him and one young man.

He presses buttons, I tell him my floor. I chat with the plump old baby doll of a woman whose orange and grey hair sticks out from her head. She just washed her hair and thinks of pressing it. It looks straightened already. She was waiting for it to dry. When we reach my floor , the old man rifles through his mind and then his pockets.

Candy Candy let me give you some.
No thank you. I give him my sweetest smile.
I don’t eat candy. But thank you.

Yes thank him, for being moved to want to give me something.

Sunday, July 09, 2006

Not Getting It

It still surprises me all the ways people don’t get it. I deleted the comment that told me to ‘ “get a life”, how depressing this blog is and that I complain too much.’

I should have left it. It’s an object lesson in the lack of empathy. Or maybe I’m passing too well. I find myself suddenly and inexplicably paralyzed and in constant pain, without access to my home, far from friends and family. Through this I have found champions, and met many kindnesses. I also meet those willing to pile misery and mayhem on my malady.

I document my resistance.

I remember the doctors standing over me telling me how they couldn’t take it, if they were me, how strong I was and didn’t I want some drugs to help my state of mind? My neurologist at the time was insistent. Finally I formulated what I needed: not anti dpressants, but a laptop. How could they help? Get me a laptop and pray for me to walk.

They did not get me a laptop, nor did my job, that I was frantic to maintain.

All praises to the internet and to a wonderful RENTWAY that rented a Dell,
Delivered it to my hospital room, enabling me to order a laptop. It was unaffordable and it has been my lifeline.

I remember a doctor saying that a laptop would be less expensive than antidepressants--- but it wasn’t something he could write a prescription for….

Anyway, I remain stunned by the singular lack of empathy among so many.
Is it that I can record what happens, that the very nature of the reportage renders it “complaint”? My able body and the previous shape of my life by its very nature spared me all of this casual abuse, doubt and difficulty.

Some of you will say of course. Thanks to those who can hear and feel.

I miss moving through a day, unplotted, to jump up and wash my clothes, to take a quick shower, to not fear falling, to not Require delivery or pick up, to not be subjected to anyone’s lack of understanding, to not need anyone’s help.

Saturday, July 08, 2006

Art is Medicine

Art is Medicine

I long for my kilns, my torch, my plaster, my clay, my fimo, my glass, my wire, my paper, my Cherub and Critter- the papermaking machines, my roundnose pliers, my needlenose pliers, my pliers that make curves, my hole punches in cunning shapes, my already made glass beads awaiting being formed into jewelry, my yarns,
my pulps stored in the fridge that frightened a vistor, who thought i stored wierd foodstuffs, and my yard a bloom that
fills its corner with light. I reach for tools that are not here and weep and weep for the making that filled each day to overflowing.

I signed up for an Art Swap. One year I did too many that did not return my expectations , but for each and every one, I learned something, solved a problem and created work that I enjoyed. So here, tool less and paralyzed, I had to rethink how to create.
And I am delighted to experience for the first time, putting paint ( and other things) on canvas. and maybe my camera
will make its way back to me so I can again document my journey.

I am so grateful to create.
All praises!

Art is Medicine