Help

A man calls to help me. And calls again and again. I can never get
to phone by the time his perfunctory messages have ended.Today he
wakes me at
10--- I had been up until 6 a.m. and says he will come by at 11.I
calculate the amount of time it will take me to get in and out the
chair, on and off the commode, washed and dressed, cover my eyes and
snuggle deeper. The door bell rings at 11. This wakes me
again. He never left a return phone number because, since he is the helper
and I the helpee- I am not allowed to know his phone number. The
Faith in Action coordinator calls and of course we talk because 1.
I am now awake and 2. He left a phone number.

I make an appointment to talk to the man at 3. We speak. He complains about how
hard it is to get a hold of me. I tell him, it isn't hard, you have
to speak long
enough for me to get to the phone-- I am paralyzed and in a
wheelchair. He wonders if the door bells
work. They do I tell him, but I nearly NEVER answer the door unless I
am expecting someone.

He quizzes me-- how do i handle all the folks I must be in touch
with? I should roll around with a cellphone on my lap. I have a cell
I tell him in my wheelchair bag. He asks for my cell phone. I do a
quick calculus of what i need and the road to get it and give him my
cell phone number.
10 minutes after we are finished talking he calls me on my cell to
tell me something I told him was so, was so ( car inspection before
registration).

When he calls it says RESTRICTED. I usually don't answer RESTRICTED
because it costs me money. But I answered because I knew it was him.
I tell him this. He admits that his daughter feels
the same way. And that next time he will call from his cell phone. Thing is
this will now reveal his number to me. However, his secret is safe with me.
I'm the paralyzed woman in the wheelchair in need of help. This is hell.

Girl

The quadriplegic man, newly made the head of Advocacy for the local Center for Independent Living, tells me he will have the girl who took the notes at the last meeting e-mail them to me. 

I've called him five times trying to get information on the recently formed action group, that another of his colleagues had suggested I attend.

I had to ask for minutes of the meeting as he seemed unable to say what they discussed or were working on, other than assuring that curb cuts would be shoveled on Market Street, come winter. 

The girl? i repeat with a question in my voice, is she a teenager interning there? I ask. 

No, he says, i've known her for years.
Then I don't think she's a girl!, i say and sigh, 
and he repeats that he's known her for a long time as if this is either excuse or explanation. 

Embarrassed, he repeats everything he's just told me,
twice,but faster, brighter as if to erase the bad vibe he has left. 

Nevermind his postion, Advocacy, or that his organization just had a week-long retreat where everyone was trained in some sort of sensitivity or client outreach. 
Or, heaven forfend, that his own unique challenges might make him acutely aware of such diminutions. 

No, he was still a male and the female, who could both take notes and transmit the information 
was a "girl". 

Making Paper in the Small Space

My Cherub is with me again! All priases for goood Friends who worked on the lock to open the door to get to the pantry
to get the Cherub which happily chewed the purple linen gifted to me over a year ago.

I wasn't able to make the puprple linen pulp into paper-- it needs formation aid. But there is such joy in seeing this incredible tool, invented and manufactured by the brillian Mark Lander of New Zealand, at work!

and there's my patient, loving pointy cat, Obi, with this ears transmitting light.

Charm Making

Inspired by the Game Piece Necklace.

Too bad I only had one of these blue chips, just two red blocks and no
more bright yellow daisy buttons. Yet that's what makes this assemblage
and artmaking so special--- it's nothing that I could have foreseen and purchased.... thanks to Nervousness.org and Pequad
for providing the occasion! What's most amazing is that my stash is far away and these are just from a couple of jars and containers
gifted by new acquaitances made this spring in this apartment building for the
elderly and disabled. I miss my many tools and materials yet I am so affirmed to be able to discover and make relationships with the comparatively little that is on hand.

Always Something

May 19

Another bad experience, redeemed by moments of grace.
Of course, this happened at the mean-to-me place, wher eI was again,
conducting a writing workshop.
I missed the bus.
It was scheduled to arrive between 1210 and 1230
it arrived at 12:18 and left at 12:22--- allegedly

I came down at 12:20 and wondered aloud where the bus was at 1230
Where upon Olga said-- didn't you hear the page?
No I said and no said the guy chatting me up after class--- and we had the class door open.

I wanted to kill her. No not quite tru. In the moment I knew I had to redirect my energy to saving myself.
I tried not to think of her.

i called and rapped, cajoled and argued and they said they they waited for me and left....

Now..couldn't Olga have asked the bus driver to wait or said I was on my way?
Couldn't the bus driver have come in -- eg announced his departure?
Couldn't the bus driver wait ( he, whoever he was only sat for two minutes and then called it in!)
Couldn't she have come gotten me from the classroom on the second floor?

No. All of these suggestions are too much like grace. It
was my fault for not acting uptight as I usually do, for relaxing my guard.

I was able to get another bus within ten minutes and paid $10 for it.
Then I saw Joe drive up.
you here for Writing Aerobics ?
Yep, I said, it went well.
How many people did you have? he asked,
five I said,
Though only four had signed up and two people not on the list attended....
No how are you doing, how's it going...
Graceless.

I complained to the bus driver about how i made no money today--- $11.75 for transportation pretty much made the whole thing a wash.
Well they paid you more than $10, didn't they?

Yes, I said but after you subtract the time I spent preparing for it and the fact that I'll wait six weeks for my money and it cost me $11.75 ....
Anyway he asked me what i did and I told him i taught writing and he quizzed me closely on it....
lonng story short, mayget a gig....

then he offfered me a sample of Boucheron. I demurred on the box and the man scent sample.
He said see--- that's worth almost $10.
It did take the sting off...
maybe because i was hungry. I just felt so... hurt....

____________________________________________

my dear friend told me her neighbor who's an occupational therapist said 1/2 the complaints she hears from patients aren't about physical things, but about Access-A-Ride--the nyc version off lifttline.
yShe and her mom had to use it and "The driver showed up 1/2 hour
early, had a major attitude and drove about 70 mph on the deegan, then the cross bronx,
weaving in and out of traffic.
it was crazy."
She has a friend who won't tak access-a-ride any more. too many problems, including one
time he begged the driver to drop him off, they insisted on dropping someone else
first, thought it was totally out of the way, he told the driver he had to pee, the driver didn't care
and he peed on himself, a horrible, humiliating experience.
_________________________________________________
and the hurt has lasted for two weeks, a fortnight. Today, Memorial Day, I am just getting over it. I thought I lost ten dollars and was looking for it and the I realized it was the ten dollars I spent on the bus.
Sigh.

God help me. Heal me.

Making Real the Dream

Martin Luther King, jr. I hold you more dear now than I did before your died. I was a child
who wrote

the man, the dam who stayed the flood
is gone
for now, I wash all violence from my mind
for him
but deep deep deep
runs the river of revenge
the wrongs incense me
the dam is gone

not sure about the line breaks but I remember how his death awoke something fierce and sad in me.
an ache i sobbed when the integrated couple on NPR shared thes tory of the nieghbor rining the bell of the house
and when the black woman asnwered, asked for the lady of the house. I don't know why... worse has does happen but i burst into tears remembering how that store in Pawling would not let me rent a video and how Ira argued with me for 4 hours, didn't believe me until he went back to rent a video machine and this is surely surely not the worst, not death, but it's how that casual denial, the casual insult is a kind of bellwether, how easily you can be stopped, spun around, deterred and even if your skin is thick, it's that you have to go through this somethingwithouit reason


an how this disability has quadrupled the going throughness... black female and disabled? how many ways must i be made separate from the world i came to be in?

it's a dark day, winter has come because it is it's season and i struggle to not succumb and pray pray for help with my burdens


the ache for the taste of a childhood forever gone
ache is the word i've thought about today

when you wish upon a star
o my parents made so much beauty and so much hope and love and still i don't fail it
feet feet feet don't fail me now
o lord hold my hand while I run this race
o lord let me stand let me claim my place


Amen.