Akua

The Bed Story

2011-11-19T20:53:00.000-08:00

My Bed was stuck on high.
it was the wee hours of the morning and i couldn't get in.
I spent an hour or so, looking for the manual crank,
moving the piles of tools and project bags around my bed.
Then the dressers and at long last, I found the crank, but weary from all the moving and
rearranging, I was fading.
The buttons didn't respond.
For months, if I held the cord a certain way, I could get it to move
up down, lift my head or legs, now, no longer.

I gave up on trying the crank at the head of the bed, then i tried the foot.
It's a fitted tube that goes over an inset piece...
and it kept popping out. There some positioning but finally I cranked the bed down,
my shoulder ached.

On awakening, just to see I pushed the buttons and they worked!
But that night, Sunday, returning to bed, I had to hand crank
it down again as the down didn't respond,
only the up did.

So what to do?

I was proud that it took me just one minute to find the Invoice
for my bed from 5.5 years ago. I needed it
because after looking on line for information
I needed more than the name of my bed -- I needed a model number and serial number.

There was none on the invoice-- the letters and numbers
on the invoice didn't correspond to anything on the
Invacare site, and I was unable to crawl under the bed to find anything.

But perhaps Invacare could help anyway--- the thing that wasn't working
was called the IVC pendant. It's a part and it seems on some models,
it's removable. When my aide came, I had her look under the bed
and we could see where the pendant entered the motor, but a couple
of cautious tugs did not remove it.

Invacare has a help/ answer site, that charges money -- that varies
with the urgency of your need, for the answer. When i refused to
pay, then a screen popped up, offering me the answer, but in a day.
( Two weeks later, I still haven't heard from them).

I called the firm that got me the bed. They told me that I could get the bed replaced within five years
-- of course this is 5.5 years, right on time, to not be able to get free help.
A lovely person there said that she would contact her supervisor to see if they could
find my patient sheet to get information on the bed model and serial number,
they would have to go through paperfiles-- which they might not have any longer as this information
was not in the computerized records. YEah we'ret alking back in 2006, they hadn't bothered to note
the model number or serial number of the bed.

I called the medical supply arm of my clinic who said they didn't know whether or not they did
that kind of thing, and it took four days for me to find out if it's even the kind
of repair they do.... i hate when i have to ask whether i can ask the question.

So then I had the idea of asking those who have electric beds. I called the
closest hospital who said they do it in-house and named different manufacturers
than mine. Then closest nursing home who said the same thing. The next closest nursing home
told me to call tomorrow to talk to maintenance -- their day was over. Over?
I was talking to them at 3:30. Turns out their day ended at 3 p.m. (YIKES! poor residents,
no wonder the place only had one star out of five in their ratings)

I called an electrician firm from the yellow pages -- I asked if they gave free estimates.
The phone answerer didn't know if they did ( their ad said they did, but my strategy for first contact is
to confirm simple information) and said she would have them call me tomorrow (This
was at 3 or so and they were already gone). BTW, they never called back.

I write this latest sorry saga this as a kind of reminder and rebuke, for all the "you need to advocate for yourself"
blather , to offer up my thanks for still having my mind, but my fervent wish to not have to use it
or my energy in this way, my wish to walk again, so I could work on stopping the tar sands
disruption, stopping the threat to our watershed that frackking poses, writing something
interesting.

I asked everyone local if they knew of any electricians, explaining that my bed wasn't working.
Maybe they still don't understand what paralysis means and how being able to get in and out of bed
without inordinate difficulty would be a nice thing, especially as I live alone.

But only one friend responded within 24 hours.... another lesson for me in who I cannot count on.

The universe heard my silent cries of anguish. When I was finally able to speak to the woman designated as the one who would know if the medical supply firm might even undertake repair
she said maybe but needed the information I had been unable to find or get -- the model and serial number.

She had a truck in the area she said and could be there shortly. Yes -- No -- I was stuck in bed and it would take me a least a half hour to wriggle /slide out and into my chair.

When the truck arrived, I explained to the wonderful woman that it was the pendant that wasn't working not the bed. Turns out she had a pendant on her truck and she crawled under the bed to undo
mine. Turns out it has a cable/phone type clip on the end that was lodged firmly in place...a little
screw driver pressing assistance and it was removed and a new one was placed it.

The model and serial number was on the leg of the bed, so I had that at last for future reference.
So after five days of fear and dead-ends, everything was done within 45 minutes of an answered
phone call.

And about an hour after this the lovely young woman from the distributor called to say they had been unable to find the information I wanted but that it should be on the leg of the bed, reminding me of how
little use my aide is to me, but I remain grateful for small things.

She at least gets most of what is my computer-print out with illustrations shopping list which is
better than five other people the agency uses.

I can't go anywhere or do anything but I can, once again, get in and out of bed with less fear.

Evil Nurse, Bad Help, Despair

2011-03-30T18:19:00.000-07:00

I've been 'buked and I've been scorned as the song goes. And i had to take it. I have no recourse. The letter in progress:

Nurse S. invited me to send a letter to the Board of Directors. As she said this twice during the rancorous and upsetting visit she made to my home.

The nurse insulted, demeaned and threatened me. This after she asked if i had any concerns and i told her how i was left without food at Christmas time. My aid's car broke down, allgedly just before she was to come for me. HHS did not offer me any other aid or any assistance. If i had a private relationship with my aid, then i could have rescheduled or found some other time. As my relationship is with HHS - it was from HHS I sought a replacement. HHS did offered no apology, accommodation, orassistance.

She told me tersely (insultingly) that it is my responsibility to care for myself.
She told me that if I did not like HHS, then perhaps our relationship should be terminated. She said she felt uncomfortable about me using the services. That HHS has 300 clients and there are others who are in wheelchairs (I didn't understand what this was supposed to indicate.)

This conversation took place while my HHS aide was out shopping for me. I've said nothing but praise for my aide, which i reiterated.

Well how could I like my aide yet not like HHS, she asked? I reminded her that she had solicited my concerns, I had not begun the conversation.

I guess it was foolish to answer the trick question. I was invited to express concerns
and then brow beaten, insulted, demeaned and punished for it.

I was told that the reason no accommodation would be sought for me was because
all the other aides were "too stupid". These are not words that I have ever used.
I've expressed frustration that my shopping list for Wegmans, a computer print out with pictures as well as words , indicating amounts and with a running total
could not be followed by several of the substitute people sent.

One woman brought back two bananas when the list said 4 pounds. The total dollar amount
for this was around $2. This signified she understood little of what was explained to her about the list, the money before she went shopping. I described this as "functional illiteracy."

Another aide could not complete the list (about $70 worth of groceries and a mere 15 items) in the two hours allotted -- a task which takes my usual aide about an hour.

I don't understand why there is so much victim blaming in her and your organization's point of view. I use you because I need help. I am paralyzed and in a wheelchair. If I could shop for myself, I would. I used to in Rochester where there was paratransit and here, for the few months that a once-a-week bus was available, but as there is no paratransit in Corning and no grocery delivery services, I cannot. There are things I can't reach, light bulbs that need changing. This is the help I need for which I use HHS.

When I asked about the other aide for whom I had praise -- S -- she told me that S has left HHS.
____________________________________________________________________________

That's where i left the letter, which i will not send until or unless I can find someone else to shop for me or if they dump me.

I thought i was picking my battles. I've never ever ever complained about my aide -- though she's left me up shit's creek without a paddle more than once. But she is the BEST of a crap pile. This woman went off on me because I DARED to say anything was wrong.

Bad Nurse said the problem was that the only day i was available was Monday! I said I've NEVER said that, in fact I hate Mondays, I always lose service because of holidays and three day weekends.

I've only said I can only do afternoons. She said well that's my problem. And i replied - you cant grind me down any smaller than i am, I am already ground small.
I am disabled and can't be dressed and ready any faster than I can empty my bladder, do my bowel routine, change my diapers, and empty my urine bag. If that wasn't the case, then I wouldn't need to use your services.

WHEN I told her she was insulting and demeaning I would no longer speak to her -- and stopped talking. Totally. You think I'm stupid, she said. I said nothing.

She freaked and started apologizing. I told her she had the power and was oppressing me and then she got cute -- i don't have power, she said. I reminded her how she just got through telling me that if I was SO UNHAPPY With them, then perhaps i should go elsewhere.

Then she repeated it, in a babying voice, as if to fix or recast or reframe the threat and insult.

This was horrible and sickening. I stopped talking and started praying and chanting to myself,

I talked to her again the next day -- turns out she was supposed to get my current financial information -- to see if I still qualified for the subsidy that makes their inflated costs bearable, enabling me to pay $25 a week on top of groceries vs. $50 a week on top of groceries.

All this abuse and it's not for free!

So she called from the office to do what her visit was about. And if i'm still with them, I'll see her in 6 months when she comes to watch B in my house-- which is what i thought she was here for yesterday.

No Help Update

2011-02-23T19:17:00.000-08:00

So a week and three snowfalls later, I've yet to get the list of possible providers.
I've made a dozen phone calls based on phone book listings. As I've said before, everybody here must be fully employed, because i can never find any help to hire. No returned phone calls from people who list themselves as snow removal. I would be more surprised, but this is the same agita I went through to find yard help (only to have an able bodied neighbor ask me who I used/ found (!!!)

Today I get an email saying that delivery retries had failed. Though i hit reply in sending the signed form, the agency idiot used an address that won't accept mail, unless I am added to a list. Somehow she sees the second failed message and sends me a message telling me to I need to "simply" reply to be added. This is the same address to which I had sent the signed form. (stupidity, cruel gamesmanship bureaucratic incompetence). More snow is on the way.

NO HELP FROM HELPLINE, NO HELP

2011-02-20T13:06:00.000-08:00

There was an ad on tv for the helpline. National Helpline Day. So I called the Helpline to find help shoveling.

I had previously called Fatih in Action, that, without the great guy who has now retired, is less than helpful. 'We only have people who do rides,' the harried sounding woman said. This wasn't true when Tom was there, because they had arranged for people to come help me before. But Tom is gone.

The Helpline woman asked me about my location, zip code and age. When i said my age, she said i was too young to get help. 'I'm paralyzed and in a wheel chair', i said.
She sputtered and then raised her voice,"Why don't you ask your neighbors"!

This hurt and then infuriated me. If i could ask my neighbors why would i call the helpline? But more to the point, if i had decent neighbors, which i don't, really, I wouldn't have to ask them..
And after having identified myself as paralyzed and in a wheelchair, what more did i need to say?

As I began to say these things to the helpline woman, she hung up on me.

So I wrote a letter to the Institute for Human Services that I sent to three people, the head and a couple of folks in the 211 Helpline Department since they listed only names and not responsibilities.

The reply:
Thank you for contacting 2-1-1 HELPLINE with concerns about how your call last week was handled. It appears that the person who took the call was not familiar with the resource(s) that might have been able to assist you at that time.

I have done further checking into what is available and I have learned that NY Connects does now have a list of people who may be available to do snow shoveling. You may reach them at 607-664-2298 or 866-221-7324.

I realize that snow shoveling may not be as critical as the weather warms but if there is an organization that can provide the human services you need we will do what we can to assist with making a connection.

My apologies for our having missed this referral when you called.

Ms. X

Thanks for your reply.

It wasn't only the lack of resource identification --- it was that blaming-the-victim tone that made the experience so searingly memorable.

If my/our neighbors helped, there would be no need for social services, so to my mind
it was obvious that I wasn't being assisted, which is why I called.

A simple "I don't know" would have gone further than the turning-the-table tact.
I know something is wrong with me. I am paralyzed and in a wheelchair. I need
no further reminders of my disability.

When I called the number you've listed, they identified themselves as Office of the Aging/RSVP. I asked if they could connect me to NY Connects. They did. However, as this was a bit confusing, perhaps you could, in future, give the direct dial for NY Connects, or if there is none, ask the phone answerer to include that name among
those that they say when answering the phone.

Regards,

Anyway, I connected to the designated folks who said they would send me a list of possible people. They e-mailed me a form to sign, which i did the same day and e-mailed back. They said they would send me the list of providers the next day. It is a week later and I STILL don't have the list of possible people. I've emailed them twice and gotten no answer.

I was told about a woman who does things and called her. She was leaving town for the holiday. She gave me the phone number for a college kid, who came on Saturday and did a half ass job of removing the now icy snow from the most critical place -- at the base of my ramp... It cost me $10.

My front is clean and dry and there is still not a clear path at the back for me to get out.

He was nice enough and told me he liked classical music -- I confused him by saying what was playing was opera and that it wasn't the TV but the radio and that it comes on every Saturday afternoon.

So much effort for such a little result. It rebreaks my heart that I thought the lesson, if any, was about asking for help. But I exhaust myself asking, trying to get, then still have to pay and don't get the result I used to be able to get myself, in half the time, with no expense.

Hurry, spring.

Dr. Visit Brings Hope

2010-10-07T12:50:00.000-07:00

This is the first time in 4 years that I have spoken to a medical professional who understood everything, it seemed.

Let's begin with access: his nursed pushed me along the carpet --- carpet is a shoulder buster and most folks just watch me ache, creep along, and struggle.

His office had a table that i could transfer to. First one I've seen in four years.
He ordered tests no one else has suggested:
bone density
pulmonary function
ultrasound of kidneys
because sitting in a char affects all of these

He's WORKING ON GETTING ME AN IN HOME THERAPIST

When i pulled out the STANDER literature he praised me-- yes that was something he envisioned me using to prevent osteo_____ something.

I told him about the Flexiciser, he waited for me to follow him (uber points for that, too, treating me like I am a grown up who can go from point a to b) and showed me something VERY similar, a leg moving machine.

Then show me the heated hydro therapy pool that i could be lowered into--- if i could get transport there, which i can't with regularity SOOOOOOOOO he said our goal is to get me driving and help me transfer into my car....

Why don't all doctors have dentist chair type tables? In that they go low enough for someone from a wheelchair could possibly get on.

He said where we are is backwards and that he had brought that accessible table with him.

I think i love this guy-- who SHOOK MY HAND. which just reminded me how i have not been treated well at all, but maybe this time I can really be on the road to help and healing.

He praised me and celebrated me saying he was delighted to have a patient who was motivated. ME? YES!!!!

He had read my file and knew i was a vegetarian and food conscious and so understood my desire to lose weight was about raising metabolism, NOT telling me about not eating stuff that hasn't touched my lips for 40 years.

I left with 3 appointments already set up for me--- this has NEVER happened before....
my last blood test was at my OWN insistence. I think I've found a REAL DOCTOR.
My bus driver, who I like a lot (but hadn't been getting because his firm declined
medical rides for a time) knew this doctor and also praised him.

All praises for hope and change!

____________________________

A total instance of answered prayers, because I've said the same things to the same human beings,
so frequently, it's like having a stand up routine. But who listened? No one, really.

This is my fifth year of TM and my third year home and only now did my neurologist refer me to a
physiatrist. The PA and GPs could have.

Last time I had PT in 2008 and as devotedly as I went and adhered to it, I was disappointed. I asked the therapist about other devices and other tools ( a stander, leg machine). My work there was mat work. Because that's all they had for me.

It turns out that was the SATELLITE office for this BIG facility. It makes me want to cry.

This therapist was known to the physiatrist. When I was BEGGING, bringing material,
and explaining what I thought I needed, the therapist and facility said this is all they had. Which was NOT true.

You can't ask the question unless you know the question to ask. I did a good job of
guessing, but in a system based on physician referrals, unless you're wealthy
and can purchase in home care and equipment, you are at the mercy of others whims
( or level of attention).

Useless Overseer

2010-09-26T19:35:00.000-07:00

the useless overseer aka nurse comes tomorrow to offer the veneer of aide. i hate it. i will not be nice this time as it wastes the mere two hours of help i get once a week.
this is ridiculously obscene that i am required to spend time while she asks questions about needs she cannot address.

I only get help once a week for two hours. ohter than that i am left to starve or scramble for myself.

i will tell how furious i am about two weeks without help after the day i not only had a light shopping done, but with 45 minutes to spare, the aide told me she was not allowed to go home early and had to call. When i said yes,call... then the workers
decided to leave.

all this had subsided but the annoyance of seeing or dealing with a nonfriend, non help
form pusher is just unbearable administrivia.

deep breathe.

Pain Remains

2010-09-21T13:31:00.000-07:00

hell to be up so early. I was unable to sleep before 4 something am and awoke at 8 to get out of bed at 8:30 am to wash and be dressed by 10 for the bus that came at 10:30 for the 11 am appointment.

Six weeks without meds for the ravaging pain. You don't have to apologize the bus guy said. Yes I do, thanking him for his kindness after the Dr.'s office told him it would only be a half hour and I was there for an hour and twenty minutes.
Purple pen, pad, crochet hook and yarn helped me wait for $500 attention.
She wrote a script for Marinol no Sativex yet in the U.S. and hopefully my naltrexone will arrive in a couple of days from the city--
there's no place reasonable closer. The pharmacy in Canandaigua charges twice as much, the one in PA charges three times as much (60 vs twenty) to grind up one pill to make my many.

I'm disoriented from fatigue.

Too Happy

2010-09-20T15:49:00.000-07:00

I remember the older women who told me I was too happy. A couple of peers told me this too. All I can say to that other Akua is you were right to rejoice. I thank you for your
joy because you knew how good life was for you. I speak to you from a comparative hell.
I applaud your gentleness and compassion, because you had many things I don't have:
health, your mother, your father, your bright dreams and determination to change the world. You could sleep on the floor, walk from Brooklyn to Manhattan, ride your bicycle,
carry your instruments on the bus and subway, eat florentine apple torte and caht with the smart Argentian Italian lady, be warmly greeted and served by the old Italian lady
who rocked slightly as she walked and graced you with a smile. You were right to be happy and show it, because they are all gone now and your only solace is that you loved them all, you loved your shimmering life, the songs you sung as you walked those long city blocks about your loves and your struggles, becuae now you can no longer walk or dance or hang out or play or see any of them ever again.

Pain With No Gain

2010-09-20T15:41:00.000-07:00

For the 4th time my aide forgot to get me plastic bags. since i'm in a wheelchair and can't carry things, as my hands are needed to propel me, I need plastic bags to carry
waste, spent cat litter, garbage, to the garbage can.

This time I sent her back to the store to get them. She shops with a printed list with pictures and location of each item, cost and a running total. PLASTIC BAGS was hand written in caps with exclamation points for the past two weeks at the top and bottom of the list.

Sending her back to the store to get the bags, because I have none, now, because though it is the 4th time she forgot, she was gone for two weeks. I had six weeks worth of backup and struggled for the last five days to withstand the sstench of bags I had to stuff and keep around to use.

So essentially I spent another $50 to get a mere $51 worth of groceries because several things I wanted were not in the store.

If there were another service, I would use them, but these folks are the only game in
town.

Give me strength.

Tomorrow i see the doctor who has left me in pain for six weeks by refusing to renew my script until i see her.

NO HELP FROM DOCTORS I'M CONSIGNED TO PAIN

2010-09-01T14:07:00.000-07:00

I have exhausted civic, legislative and human resources pleas. I am anxious and upset. I want to avoid calling an ambulance and going to emergency just because i can't get to the doctor. I have said all this to my physicians who don't make house calls, won't renew my script and don't care.

My neurologist won't renew my scrip because i haven't been to see her in a year. My GP said she won't authorize the med. Where everyone else takes 4 or 5 meds i take this one that is cheap and has no side effects and helps me manage pain.

My next appointment with the neuro is the 21st. I had one with her last month, but couldn't get transport for the appointment. The office offered me an appointment for 10 am on Thursday but that was undoable-- the only possible times are from 10 to 2 for transport so there's no way i could be at the office at 10 and the office offered me no leeway -- like a 10:30.

Can i live for a month without it? Hoping that when the time comes, that i can indeed get a ride to see the neuro on September 21st. The system has changed so while you dare not ask the same week or next day, knowing a month a head of time doesn't guarrantee that when the time comes, you will be given a ride....

perhaps i should call the hospital and say i'm a nonemergency contemplating coming to emergency because my doctor won't give me the care i require. My pain and anxiety are great.

This is all so frustrating, money wastingly, ridiculous.

For the want of a nail-- if i had a treasurer, i could start the non profit and solicit the tax deductible funds to create paratransit. or my city could provide a taxi
or the local store could deliver food anything could make life better and nothing is budging.

Insulation

2010-08-25T16:13:00.000-07:00

so a message is left. my aide won't be here next Monday. Wish she had told me on Monday so that I might have gotten more groceries. They planned to send someone who I thought was horrific and inefficient. It took her two hours to shop from my list that is printed out with pictures, prices, weights, measures and locations and still she left/forgot
critical things and did strange things with quantities like 2 bananas instead of four pounds.... not forgiveable because they provide me with such sustenance and tummy bulk
so i felt hungry for days without my daily banana

My nutrition will suffer, but if I eat every other day and buy one order of Chinese
take out, I will survive for a week without groceries. I am so glad that I found the
dry goats milk online and ordered it. I will ration the fresh/wet for smoothies. I will ration the cocoa and see if i can find it, too, cheaper online. Then i will have goats
milk and cocoa hot chocolate for the cold nights that have already arrived.

they are still working on the house. This is the second week. it hurts to be up after only 5 hours sleep, but try as i might i can't get myself to sleep any earlier -- here is is, 7 pm and i am more awake than i was at 2 p.m.

Still they are very kind and gentle young men who tell me what they are doing who explain the process and i am grateful for my shell to be insulated, filled, buttressed against the cold.

No Help even with Aid

2010-08-21T15:03:00.000-07:00

I was losing my mind. another week of chirp beeps-- cheeps, shrill birdlike squeals.
I had endured them the week before as the smoke alarm died, out of reach.
My aid comes once a week and so i just held on, stayed up late, played music, radio, TV to cover the sound.

So the first thing I had her do was find the sound's source-- it was the basement-- and then the fun
began. She said there was no battery. There has to be--- it is squeaking-- the sound of battery dying.
So she went downstairs again and said there were electric wires but no battery. So i had her take a picture (o the joy of digital cameras).

She did and when i looked at it I said-- this looks like a case that you can open.....
To shorten the long story I ended up calling the fire department. I only have her for two hours once a week and I needed groceries. She annoyed me as she named
various men I could call. I've never called anyone other than
the plumber for repair, nevermind having to call someone to replace a battery?!!! This is the hell of being wheelchair bound. That I can't do what i once did and am dependent on people who can't do what i once did for myself.

KEEP THE Lovely Firemen

2010-05-19T18:40:00.000-07:00

I'll just post the letter I wrote:

I just heard that the Fire Department is slated to lose 7 people.
This is a travesty.
I have had several emergencies and the ONLY AGENCY that responded was the Corning Fire Department.

The latest scare for me was the loss of electricity on Saturday, May 8, 2010
I called 911 and told them the story and they sent me to the police.
When I spoke to the police they were rude and dismissive, "we're not the utility", the
officer snarled (!!) I told him that 911 told me to call. My bed is electric, and while i finally got out of it, I faced not being able to get back into it.

So I called the utility who told me no one else had called (!!!!!) and perhaps i had done something to make the electricity disappear!! It took hours for other folks to call.

Contrast this hostile and indifferent response to the Fire Department: they have a hot line to the utility, asked if I was okay, assured me that if i needed help i would get it--- as they have so many times before.

When i was able bodied-- they caught frightening bats for me. When the house was new to me, one of the cats knocked over some unnamed liquid in the basement -- a frightening chemical spill. The fire department did the possibly hazardous waste clean up. When I thought my ceiling was falling down, it was the fire department that answered my call. When i thought i was having a heart attack, the fire department beat the ambulance to my house. When a pipe burst and I couldn't reach the shut off, the fire department saved the day-- swiftly, with kindness.

Sad to say, 911 and the Police are not as compassionate, on point or as speedy as the Corning Fire Department. Please join me in telling our representatives and the City Manager that this vital, critical and skilled service needs to remain!

Picking Poor People's Pockets

2010-04-10T14:59:00.000-07:00

I so want to relate the backstory, but I'll restrain myself slightly and start with the current one.

The metal panel that acts as a container/or guard that keeps the flesh from being scrubbed and burnt off the tender part of my thighs is cracked from its thin connector
on one of my arm rests.

Now when my tires were replaced and they rubbed against the armrest/guards I thought to enable my suddenly incredibly difficult mobility by just flipping the arm rest back or removing it. But since i can't feel, it wasn't till the end of a day of this that i felt dampness by the side of my leg and saw bloody tire tracks branded on my right thigh.

When i had asked the tech how much it would cost to replace the part, he told me
$200, not including labor.

After going to the dentist and having to struggle to put the whole assemblage back together, I determined that i was ready to go hungry a bit-- it's warmer, so i can eat less-- to buy this part.

Turns out it's $70 --- multiples less than $200.

Lest you think maybe he thought it required the whole arm rest or some such---
replacing the whole arm rest is $135.

Now back story -- i said the tires rubbed when he put them on, that it felt tight.
When i called the base because it hurt me to wheel around, they were going to
charge me mulitiples of what it cost for him to put the tires on -- I think the estimate was over a 100, just to assess/ determine a solution...

Now i know them as liars and thieves and pray that i need no repairs and if i do, i can effect them myself or find another supplier. (i did find another supplier
in the next city, but they never bothered to return my calls and i've just built up muscle and shred space on the new tires so that i can wheel a bit more freely)

I am awash in relief and hurt and anger.
I would have done this six months ago. It is wearying that every SINGLE thing I am told must be examined, investigated, can't be trusted..... like my finger (another story about avoiding unnecessary surgery).

Shoveling Snow

2009-12-09T17:01:00.000-08:00

It snowed and stuck.
My neighbor used to shovel for me, but since he
flipped on me and no longer mows for me
shoveling, too has stopped.

A distant friend sent me the name of someone
to replace the mowing, who also does snow removal.
I called this man and he wanted $30 to $40. I
told him, honestly, I used to pay $10. I'm on the corner,
but it's a small city lot. I asked him if he would
do it once for $15, no, he said, he'd come by in twenty minutes
and take a look but the best he *might* do is $20.

After twenty minutes the door bell rang.
It wasn't the guy.

Two lovely
young girls of color were at my door.
This is very unusual where I live.

Do you need help
with your snow? the the taller one at the door asked.
Yes thank you I do. I laughed. My heart so light and
happy. This was me, once, trudging around our neighborhood
in Queens, looking to make some money.

How much do you cost?
How much do you want to pay? the second
one, leaning on her shovel, asked
How about ten dollars? I said.
They both smiled and said" fine!"
I asked if they were sisters.
no they laughed.
O I said, then I better go find
two five dollar bills.
I gave them both $6
and they shoveled around my house
and both my ramps, and the access
areas.

About an hour later the guy called
and asked me my address.
I told him and said I expected him
awhile ago.

Well decided to grab a bite to eat.
(I had called him at 2 p.m.)
I drove by and it looked done.

Yes, I said it was.
Don't you think it
was a $10 job, I said

Well, maybe $20 to $25

I'll keep you in mind for next time I said.

I hope Latisha and Cheyenne stop by again.
I thank God for them.

No Help from the Helpers

2009-12-02T20:04:00.000-08:00

I don't know why those designated to help are often the worst humans. It has been so for me. Today I spoke to the owner of the medical supply place, telling her how I had put in an order
two months ago for wheelchair wheels.

She began the twenty questions, so in disbelief she was that
her employees in this city had neglected me.

When I began to remember names and even described
how one employee browbeat me about my equipment-- there's no such thing as solid tires-- well I'm sitting with a wheelchair with solid tires, I had said
and how yes, someone had come to my house to measure and CONFIRM what i had
named and described--- then the owner said 'o so and so is very outspoken'
at which another me would have sucked her teeth. If you KNOW THE WITCH CAN'T COMPORT BUSINESS WITH CIVILITY WHY LET ANSWER THE PHONES?!!!

and there's no record of your
order in our computer system she said and i told her how sadly I was used to impolite behavior, but I found it unfathomable that it was two months later and my new tires and new armrest were not yet here and installed.

Fortunately Everything Medical has a website, which is how I got the message through. That's just today's story of abuse and denial solely because I can't walk.

HELP: followup

2009-09-11T10:44:00.000-07:00

I never heard from the man who browbeat me about my car.

I held my tongue and ire for nothing because I never received the assistance.

Letter to Philips Lifeline

2009-09-11T10:41:00.000-07:00

After spending 3.5 years and thousands of dollars with you, you lost me as a customer for $5.

I found a local service in my area for $20. I was paying Lifeline $35 and asked for a reduction and was persuaded to remain with Lifeline for the comparatively high $30.
I was told that my billing would be reduced $5
It wasn’t.
I called on July 17.

My recent Amex statement that showed me being billed on July 20 with a date of July 17 for $35.

I spoke to Wade on July 17
On August 17 I called and was told that my billing date was the 16th--- though my Amex bills have shown the 17---
No apology was offered, nor was a reimbursement offered. I spoke with two areas—billing and customer service.

I think your behavior is unconscionably wrong and rude.
I am therefore discontinuing my relationship with Lifeline
I don’t understand why my years of regular,automatic payment counted for NOTHING. I will be sure to tell others who are disabled to go elsewhere for service.

गेत्तिंग Help

2009-07-09T21:13:00.000-07:00

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.

June 16

2009-06-22T17:57:00.000-07:00

4 people here to tell me there will be no handicapped parking sign in front of my house. allowing the louse who blocks my concrete landing pad to continue. But I gave a piece of milkweed fluff paper to the City Manager, as he was from papermaking Maine. After talking about our wealth of wondrous weeds, I showed him my Cherub, vat, M&D, press, process. This made a bitter moment sweet. He deemed the paper "really nice" 2 bus companies and
a cold cop . sigh

Later my neighbor told me there was a handicapped parking sign just down the block.

More Denial

2009-06-13T14:09:00.000-07:00

The physical l therapist told me she is closing my case out as there is nothing she can do for me. What she proposed was that i spend a couple hundred dollars to get my (unused) motorized wheelchair adjusted so that i might possibly be able to transfer to it without help. I said i couldn't gamble away money... if had some assurance or preview or trial then i would do it. What about standing, leg manipulation, etc? No answer. Case closed.

I want to stand. I want a stander

SET BACKS & STUPIDITIES

2009-06-09T18:38:00.000-07:00

So after hustling, calling getting annoyed, rehearsing, writing and rewriting a new work, practicing, rehearsing it, creating a "set", getting a friend to bring my drummer back and forth to me --30 mile drives; the drummer himself, borrowing drums, arranging for sound and photography, shopping for clothes for the gig; researching and calling and finally finding very expensive transportation ($75), crafting and sending bios and pix; creating materials to hand out; printing brochures ----

We can't perform, because the Community Arts Center, removed its ramp and did not replace it. How could a Community Arts Center be considered a COMMUNITY anything and remain inaccessible?!!!

ARGHHHHHHH!

After a year of countless phone calls, numerous letters and battling REFUSAL, the City Manager and someone from the police is coming to meet with me to RE-ASSESS why i want a handicapped parking sign in front of my house so that I might possibly have access to the front of my house. I was refused because "there's plenty of parking" in my neighborhood. Exactly I said, so why does some idiot park right in front of my house, blocking the one bit of concrete that breaks the untraversable grassy median, the one bit directly in front of my house and RAMP, when there is plenty of parking everywhere else, when every house has a driveway or alley access. I don't need to park, I need ACCESS.

ARGHHHHHHH!

After a year and half of battling to get my ramps made accessible, to meet ADA standards, after one agency after another said they couldn't do anything. And then finding an agency to help. And then having the bad ramp company refuse to sell their contractor another ramp section to make at least one of my ramps easy to use..... last week, I looked outside my door and there was a hunk of ramp in my driveway. I tried to reach the contractor and the agency. A long 24 hours later i reached the agency person ( my own counselor having retired and his replacement having fallen ill), my third person in 18 months, said o! i didn't expect it so soon. So you knew it was coming ? I just found out about it yesterday. Sigh. Had i known it was coming, I would have asked that it be left in a more protected place, a less visible place.... why is it that the least skilled at communication or kindness are these folks in Social and Human Services?

I got a letter saying that my turn had come up for weatherization and giving me a very tight deadline ---two weeks-- to get it done. I called immediately. They want me to come in to their office in the county's seat--- about 35 miles away. I can't I said, I'm paralyzed and in a wheelchair. Can't someone bring me? I know no one with a lift in their car and there is no transportation. They want bank records and all sorts of personal information. Can't someone bring it in for you? Well why can't I do it over the phone? Because someone has to come in. But if that person isn't me, why can't i do it over the phone and send you all the information. You exist to help me, or people like me... I mean if I could get up and walk, I wouldn't need your help,I would weatherize my home myself, ( as I had in the past!!!)
but I'm paralyzed and in wheelchair in a Corning, NY which has no paratransit and you know there is no paratransit here......

ARGHHHHHHHHHHHHHH!

Insult to Injury, Salt in the /wound

2009-05-24T21:05:00.000-07:00

A year and half of difficulty. One ramp is unnavigable the other barely so. But another agency said it would fix what the first wouldn't. Then to find out that the perfidious supplier, REFUSED to sell the contractor the an additional piece
to fix my ramp..... this is INSANE! and WRONG.

IT took MONTHS to get a THIRD agency to measure and say hey, this doesn't meet ADA standard... which is deep.. it still might have been hard for me and needed adjustment but that it didn't meet GENERAL standards, after months of insults about my inability to do/use it!

Here's the letter I sent. I've lived a year in not enough, not done right. All that is is left is prayer, now... a lottery win, healing... or maybe the better business bureau will help.

Arbor Development selected Pyramid Ramps Inc to install ramps on my home. Neither of the two ramps installed by Pyramid Ramps, Inc. for wheelchair access to my home met ADA standards. This was assessed and confirmed by AIM.

Both were too steep. One was installed half on concrete and half in dirt and began to sink. Both had wood that warped. After months of requests, one ramp was moved to be put on sidewalk, but still was not centered. The other was extended. After months of begging, they were finally bolted/nailed to manage the wild and un-navigable warping that occurred after every rain. Both are still too steep and still don't meet ADA standards.

Another contractor (hired by VESID) attempted to buy a ramp section and install it to make at least one of my two ramps useable. Pyramid Ramps has refused to fill his order and said disparaging things about me.

I have written the Better Business Bureau about this. All I want is easy access to my home. It hurts that it has taken so much energy, time, pain and money to get done what was promised and what should have been done right the first time, nearly two years ago. (Money was spent on eliminating the two-inch step at the terminus of one ramp and evening out the dangerous transition at the other).

Your agency said it could do no more for me. But now through your selection, I am being denied the means to remediate the unhappy situation your supplier selection created.

Corning PARATRANSIT NEEDED!

2009-04-15T18:51:00.000-07:00

I want to start a nonprofit to provide on-demand paratransit in the Corning, NY area.

From Elmira to Corning to Bath, there is no on-demand, wheelchair accessible transportation. I have contacted every agency from United Way to Pathways, from CEATS to AIM. Elmira offers its residents Dial-A-Ride, which enables assisted transportation for medicaid patients only. For
some jurisdictional reason, First Transit/CEATS (Corning Erwin Area Transportation System) does not offer even this limited possibility in Steuben. CEATS buses--- did not have modern tie downs nor seat belts for wheelchair riders. They have written me that they have fixed this, but the twice that I rode fearing for my safety, was two times too many to endure such laxity.

When I was recovering in Rochester, they had Lift Line buses available 20 hours a day 7 days a week requiring only a 24-hour reservation, and costing the user/rider an average of $1.75.

I've used Steuben Coordinated Transportation, when they let me--- and that is now only available for medical visits. They then wrote asking for contributions saying that the cost of each of my
trips by Steuben Area Rides was $27.50! In other words, the only possible service costs $27.50 to take me from Third Street in Corning to Wegmans, or to Guthrie Clinic. These are rides of under 2 miles.

I had several ideas to fix this sad situation:
1. Fund a vehicle with a lift
1a. have it managed by a taxi service, or by Institute for Human Services or AIM-CIL (Center for independent Living)
2. Fund the insurance rider that would enable Founder's Pavilion make their fleet available to residents by reservation
3. Fund an insurance rider that would enable Pathways to make their fleet available to
residents by reservation.
4. Create a nonprofit to provide the service I seek.

I spoke with a transportation planner who suggested that the organizations named above ( as well a Birnie Trasnportation which operates school buses in our area) are not interested in assisting the
public, and even if funded, would probably balk at the additional responsibility.

I've written, county, state and national representatives as well as every organization named.
I've also called officials and representatives.

I've been cautioned that the reason on demand paratransit doesn't exist is because we are a small area. But it's our very size that makes me think that this is easily accomplished. Even one vehicle($15,000) a driver, two cell phones, computer and dispatcher would make a huge difference where there is none.

As no one is addressing this critical issue.

Hence, these next steps to create the access I require.
Can you help?

Thanks in advance for your time and consideration.

That's the letter i wrote vs. killing myself. A year of not going anywhere--- not even as a baby was i ever so
confined, because even then i know there were weekly trips to Manhattan to be with the grandparents.
Only for my first 6 week was i in one place-- in Mama and Daddy Edwin's top dresser drawer while Hope got help/ instruction on my care. LOL! I can't imagine her not knowing, she was just brilliant --but I was their first grandchild. to not be able to travel or shop oooo this is like prison. i look at the sky and the birds and try not to lose my mind.

No Room at GUTHRIE's CLINIC

2009-03-16T20:15:00.000-07:00

There was no accessible room in the whole mulitfloor, multipractice, small hospital-sized clinic
Guthrie should be ashamed!

So I almost went untreated, unexamined!
The doctor YELLED at me, if you can't get on the table, I can't help you!
What i am supposed to do? WHEN I MADE MY APPOINTMENT, I ASKED FOR AN ADJUSTABLE TABLE
I SAID I WAS PARALYZED AND IN A WHEELCHAIR!!!

Three people had to lift me up and put me on the table
and the man held me while the doctor looked at my
butt

is this the 21 century in America after the ADA?!!

I called the local Council on Independent Living, but given their past
lack of support for anything, including transportation, nevermind
my non compliant ramps--- who nkws

Starting Again

2009-03-16T20:11:00.000-07:00

March
a year home and nearly a year since my father died
and six months since Niles, fluffy cat died

And so I begin again to fight

My local neuro tells me he can't do squat for me. Go away
someplace else to that hospital in the city you were stuck in,
that i can't get to.... because I'm paralyzed and in wheelchair
and there's no transport in this town to anywhere, unless you drive
or fly away.

BUT I have been calling and begging for a referral to another neuro
why him vs my PC? Because my PC just up and left, the third one
I've lost in two cities and three years. Good one in that
she prescribed my Naltrexone as I requested and now no
one else at this hospital-sized clinic ( which has no accessible
examination rooms) feels "comfortable" renewing my script which is why
I am trying to get to another neuro......

I refused neurontin back when I was in the torture and abuse home
( no nursing, though it was considered one of the best for rehab).
I remember being derided for my concern about side effects--
well that sealed it for me. Since their actions were cruel and stupid,
and I went hungry for want of fresh anything, I knew to ignore them.

Why have i yet to run into the heroic or even competent doctors we see on TV?!!!!!
I am down to aspirin and naltrexone.
I take a lot of vitamins-- C, B12, folic,calcium, k12
B6, D, bentofiamine, and my pain-- for over a year
3 to 7, has been 0 to 2....

Why would you deny me something for my pain?
Because then i have to come see you and beg for the monstrous
crap... wait no... worse than that.....just uncaring and evil,
because, I'm supposed to go someplace I can't get to.

Aide Gone, Activism

2008-10-27T19:39:00.000-07:00

My aide was taken away, so now i more than intensely dislike the home health care service. This is the same ...
stupidity that i suffered in Rochester. Just when I settle into some routine or expectancy it is snatched away.

So what is the universe trying to tell me? If all is change, then change my paralysis into mobility again.

And this happens AFTER i see her and so I must make do, go hungry and without food until the new person shows up, because of course it is not on the day-- Monday that I usually had support. Another relationship lost, severed.

So I've written several letters to the editor. In September, CEATS came to my house to assess what I was talking about in terms of getting assistance on a bus. THE BUS HAD NO SEAT BELTS AND ANCIENT TIE-DOWNS. So yes, I can get a bus and take 30 minutes to get to the grocery store-- usually 3 minutes away--- which now i won't do
because it's 40 degrees in October and they said i would have to sit for 20 minutes at the transportation center.

Why is there no on demand transport with all these agencies with lift buses?!!! Why is it Rochester can do it and Corning can't?! Corning is 1/6 the size and has 1/10 the problems and it is sheer negligence that there is no
dial a bus, dial a ride. So how much do i keep fighting this situation and for remediation... if i could walk i would not need their
assistance their neglect could go unheeded. United Way, the Steuben County Legislature, the Mayor, the state
senator, the state assemblyman, the office of the aged, the mayor, our congressman, and our US Senators,
I've written them each in turn and all. No one has fixed this.

And i see the fix. Get either Pathways or Founder's Pavilion to respond to calls-- give them money to extend their insurance to do this or sponsor a vehicle with the local cab company..... Surely a Fortune 200 company town can make this happen. Lord, please help me.

So this is the salt in the wound of not having the lady who knew how to shop effeciently so the 2 hours i had her, more
than the week's groceries could be gotten, I could actually get a bit of help in the house.....sob. I can't shop for myself and have lost someone who could.

Small Triumph, Recoup

2008-08-08T12:38:00.000-07:00

Today for the first time since February, I took a shower on my own.

Shame on the idiots that limited my independence with theit incompetence and penny pinching.

The shower cost me more than pride on indepedence, it cost and will continure to cost time.
I've spent about $1,000 on health aide time and $600 on a shower wheelchair.
They spent abou t $600 having the lip on the shower, eradicated,

It took me about 2 hours to do it.... the shower itself was 20 minutes, but the transfer from one wheelchair
to another and back again, plus the cleanup of water.... sigh, argh!!!!

My shower wheelchair barely fits in the shower and so the water pours out the bathroom, down the hall and into the kitchen. This is a good half hour cleanup, though i strategically placed towels in the hall.

While maneuvering wheelchair close and away from the bed is nervewracking, It is much less uncertain than the slide across the shower bench transfer.

I had asked first that they just tile a space and i was told that was too expensive. This too narrow shower is based on someone standing, as it's "inside" is not as wide as the wheel, the wheelchair sits on the what was (prior to amendment) the raised edge of the shower stall.

I will try not to think about this much anymore. This accomplishment frees me from the hostile incompetence
of the Home Health Service. No more being awakened at unexpected timed, nor having to get up earlier than i want to await someone to basically watch me and not clean up. No more paying for that stress and inconsistency.

No if i could only shop, I could free myself from the "homemaking" expense, too. I have hope. I got a letter
that my county legislature is working on it. If there were a car service with a small van of lift fitted SUV,
all would be solved and it would be better than a municiple bus service, but as it now stands, I have nothing....

Lack of Transportation

2008-08-05T17:08:00.000-07:00

As Rochester discusses REDUCING the fares for the disabled, I, in this small city, have no transportation UNLESS
I am going to the the doctor.

How can this be, as busses with lifts rumble past my house nearly daily?

Hopefully where there is a will, there is a way.

Somehow, the local center for the disabled has not seen fit to make this happen. School buses could help in the off hours, the Founders Pavilion buses could help, the Pathways buses could help and the CEATS--- Corning Erwin Area Transportation, could help. But thus far they don't. Why in a place with few sidewalks, they won't help you over the rough terrain, beats me.

In the city of Rochester, where the sidewalks were comparatively smooth, they would help you over the rough patches. Here where such help is needed, that help is not available.

In the city of Rochester where the distances were multiples of the distances here, I could go for a pittance.
Here the "real cost" to go for my 2 mile trips is $27.50!!!! In Rochester this cost $1.75.

I am tired of being BLAMED for what SHOULD exist, what should be available. When the rest of the civilized world
offer some options.

Help me, Lord, Help me.

Girl

2008-08-05T17:05:00.000-07:00

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".

Concerns: That No one Else Suffer

2008-05-19T18:52:00.000-07:00

Monday May 19, 2008

Dear Mr. Eaton

I am paralyzed from the waist down in a wheelchair, unable to walk. I am new to my condition having spent over 52 years as an able-bodied person.

I am grateful for the help and support that SCAP afforded me, enabling me to return to my
home.

However several major things were not attended to and were not installed correctly.
What seemed accessible was not.

I desperately hope that my disheartening and difficult experience will save others in need from the same heartbreak.

My ramps, installed in September of 2007 by Pyramid Ramps, appeared in pictures to be too steep. I expressed this concern and was assured they only "appeared" too steep.
They were. Neither ramp met ADA guidelines, including those for a foot per inch of incline. The boards warped. Some are spaced, frighteningly far apart. The front ramp, inexplicably and sloppily installed half on dirt and half on the sidewalk, began to sink into the spring ground. It is too exhausting to recount the numerous emails, calls and discussions and reassessments in an effort to get them fixed.

As of this date, May 18, there are still issues which i am left to resolve myself. The front and back are both too steep. I cannot go out my front door unaided.I can exit and enter the back, as long as I don't carry anything. Last week, I fell backwards as I returned home from grocery shopping, as too steep slope acted on the bag of groceries. Fortunately the bus driver rushed over to right me.

A 2.5 inch step was left at the front of my house at the end of the ramp. At the rear the too-steep ramp terminated in an un-level, mixed surface walkway such that only three wheels touched the ground.

What was the role of the so-called disability expert in this? How could you install a ramp and leave a 2.5 inch drop, which of course, means no access. How could you install a ramp and leave ground that i could not roll over?

I have spent hundreds of dollars on these fixes-- money I don't have. It would have been nice to have had this considered, discussed and explored by the so-called expert/advisor, so that the funds raised for house amendment could have been raised for this as well. It would have been nice to know that still un-useable front ramp was to be my "emergency ramp." I did not know this at the time of the rehab, and had I, it is something else I would have asked my fundraisers to consider.

My shower was to be a roll in shower. It has a hard lip and slopes downward in TWO directions.

I was once independent in my bathing, now I must engage someone to assist me as I cannot safely access the shower alone. This is what should have been done for my shower http://www.accessibleconstruction.com/services/bathrooms/25.html a collapsible, roll-over barrier.

What was the role of the so-called disability expert in this? I remember her saying that she was on site for much of this work and yet the shower is unevenly installed. It is still the wrong kind of floor....another thing i had asked about -- I had asked for tile-- and was told that this type of shower was a cost effective solution. Not for me as I now must pay hundreds of dollars for a home health care aid.

I had asked that the shower not have a pre installed chair. I had said no to the chair. This chair is emblematic of the failure to listen, consider or even understand. The fold down chair was against the wall of the shower, more than four feet away from shower controls!!!! How could a paralyzed person, were she even able to land on the too-small spot, turn on the shower? When I pointed this out I was told well, just fold it up. As I was told repeatedly that this project strained the budget why was money wasted this way? Insult to injury, when I attempted independent access using a shower wheelchair, the foldup chair got in the way.

The chair took two men hours to cut it off, as they could not remove it and to my horror, they contemplated breaking my new wall to de-install it. Can you imagine my frustration? Ugly
pipe pieces stuffed with silicone now protrude from my wall.

My options are bleak: reconstruction, which would require me leaving my home, which I cannot afford or even figure out how to manage, or to live, only able to shower, when i can hire assistance.

I bought a shower wheelchair in an effort to not have to hire assistance, I had to pay for the removal of the 2.5 inch step and for some paving so i could attempt to exit my house independently and I pay for a home health aide-- something I did not have to do before. Thus far, fixing the fixes has cost me a devastating and unexpected $1500 and the costs
continue to mount.

These costs could have been avoided if someone who understood even a little of what a paraplegic needs, had been employed.

That this was not so, is a travesty. There was a window of opportunity to do it right the first time, while I was not in my home. This has gone.

Again, I hope this helps someone else not suffer from failed expectations or be stuck in a home that doesn't work.

Regards,

Going to the doctor at long last

2008-05-19T18:48:00.000-07:00

I went to the doctor all by myself.
this is what i thought it would be like.
A bus like Liftline came
there was one other person on it.
Getting on a bus at my own house was like heaven.
I am in tears of gratitude relief and joy.

The bus driver was familiar.She used to work at the Radisson,
had a hip replacement. We bonded over
emptying IRAs to help ourselves through our
health crisis, getting help from
grants and friends and NOT getting
medicaid. She see people working the system on her
bus and how she no lives for today because the
hip replacement ordeal opened her eyes.
She tugged me on and off the grass and waited for me to get up the ramp
before pulling off.

and i met one month old
the latest grandchild of L and L had a stroke while i was gone
and suddenly has white hair
he'll mow for $25 as often as it needs it though
he wants to raise his rates to $27 i said cut me a break and please please
don't mow my flowers i know you hate flowers and he said
no i don't, look at all my hostas and laughed
saying L those are mainly about big green leave
and he and his daughter asked me what i had and THEY had heard of
it S a couple of blocks away had it
and his daughter pronounced that i would walk again
and this is how i remembered home
the apple tree in bloom and my flowers
and L will mow and promised promised
that he would not mow down my flowers

I have high blood press 162 over 90 and the doctor wants
me to take pills and i said no what else can i do
and she said workout with 5 pound weights and she commended me for using the
manual

I have a referral for a neuro, a mammogram and a colonoscopy...
which i dread because they give you something to empty out your bowels
and that will mess with my routine... or worse, I'll just be a mess....

The doctor did not have or refer to my records
she was wierd as always though i tried to chat her up

The LPN said they couldn't do a papsmear as they have wheelchair accessible rooms
that is with the low tables.... and this Clinic is the size of a small hospital
and spacious so this to me is a travesty but i had one last year this time
so i won't bug about it till Fall.

I am so happy to have gone out all by myself and have come home
all by myself, my first time and the kitties celebrated with me.

Sad Affirmations

2008-05-19T18:44:00.000-07:00

The SCAP lady returned on Friday with another crew-- Goldstar to screw down the boards on the ramps, as they are warping (visibly rising and curling after every rain)

I took her to task about the ramp guy and Shiela-- how could she approve things that weren't even in spec? Well John the ramp guy approved it That's like having the fox guard the hen house. I exclaimed!!! Well is he had to redo them, then it wasn't to his benefit. Sure it was I said, because according to you, no one else ever complained.

She wondered why. I said only stuff that wasn't even me kept me going, because the process wore me down and was painful. And this was all new to me. Each year gets harder so if i had been used
to being denied, it might be different.

Like her saying how the amendment was because it was "uncomfortable" and come to find out it didn't EVEN meet ADA standards.... so it wasn't about my comfort... it was out of spec!

The guys tried to take the seat that i said i didn't want, out of the shower. I showed them how i couldn't even fit in the shower with my wheelchair, because i had to pop over the lip and back in.

I refused to let them bust a hole in my wall to do it, i said get a saw and just cut the metal
i no longer care if it's not reusable---

and i got to say to the SCAP lady.... i told her ( the idiot sheila who insisted on the useless chair)
that i didn't want it and not to put one in... now we can't get it out....!
She said i know i know.

Anyway the Godlstar guy said that the shower was WRONGGG!!!!!
shit piss and corruption, of course i have a problem entering it, it shouldn't have the lip on it and yes it
down slope down (vs up like the bathtub) so sure i would have trouble getting in it.

I was glad the scap lady was there to hear him say it was the wrong kind of shower. though it has cost me tons of money and more, all my self sufficiency.

Worse Than EVER

2008-05-01T13:20:00.000-07:00

BUT, the great undoer.

I had to be lifted over a 2.5 inch step to enter my house.
My ramps at the front and back were both too steep for me to try alone.
I had been told that it only appeared that way in the pictures.
They both were too step in that NEITHER met ADA standards.

And inside, I could not get off my shower char... the slope downward in the shower
just enough for me to be unable to managage alone.

So back in my accessible home, I have new inaccessibilities and now
require help where I had not had and did not need any for two years....

It's been MONTHS of calls, cajolings, administrivia and the
salt in the wound of woundedness occurred today.

I called to double check on my transport for the doctor's tomorrow,
even though they told me to call the morning of, I hate to leave things until the last moment.

I chatted about the time... the doctor's appointment is for 11:15
and would the van be here at 10:30 later, sooner?

The doctor's office is over the bridge, across from the Museum,
5 minutes away.

They put me on hold then a woman came on and told me
that a mistake had been made, they don't do Dial a Ride in
Corning.

Now this is after a dozen phone calls to find them, call again to get the forms,
send in the forms, ascertain whether the forms where received, check on the progress
of the status of being certified, assuring that I was certified. making the reservation....

I started this process before even making the doctor's appointment and
the doctor's appoint was made the first week in March for May 2.

I had been annoyed that it was 8 dollars each way, regardless of distance,
now there are no door to door options for me.

The idiot apologized but i was apoplectic.

How how how how and then knowing she made this error why couldn't she
just provide me my ride to the doctor?

She could do a route deviation which will cost me $3--- my
barrier is that I still can't get in and out my house alone!!!!!

They are coming tomorrow to bolt down the warping boards but will not
extend the too steep front and won't fix the still hard to get off back ramp.

Anyway a million phone calls later, my aide has switched her time
and will be here to help me on the bus and I pray I'll be able to figure out a way to get back in the
house.
I'm very depressed and tired of arguing, calling and this kind of crass moronic incompetence
and cruelty.

Home 1

2008-05-01T13:15:00.000-07:00

I must start back at the joy, without remembering the joy, I would dismember my soul. Ha! I have already lost the use of limbs, I must cauterize the psychic wound of having to be at the mercy of meanness and idiocy, I enjoyed the mercy and kindness of strangers and must dwell in the grateful place to help me through the incredible pain of present disappointment

Dear Friends and Family,

Getting back home was quite an adventure through a snow storm!
And getting back online was another -- a 4 hour installation, New lines to be strung, holes to be drilled.

But at last I am here again, in my reimagined abode. I am blessed
with light, no matter the brightness of the day. I forgot that my house is pierced and nearly translucent -- 13 windows on this floor and the back door is half window and the front door has a long attenuated oval of clear glass.

This is a clear, energetic space.

My kitchen is a singular delight with a wonderful double sink (missed this!)
gas stove top and tons of counter space. I had forgotten how much storage I had, because having lost most of one wall of it,the remaining cabinets are plentiful and lovely. I glide across the gorgeous
wooden floor with the greatest of ease.I am affirmed in my choices: the slate/stone vinyl in bathroom and kitchen is neutral as I wanted it to be. My funky old mudroom entry at the back is spacious . I smile remembering squeezing by the lawn mower (and chipper and weed eater,etc. LOL!). There is a wide landing at the back.

There are surprises outside: my beloved catalpa that I planted is truly young tree now and larger than the city's maple (planted in 2005). I see thorned canes that suggest a rose against a window - how did it get next to the house? And at the front big window there is an alien woody something - I remember fighting it and now its woody limbs assert themselves, but not for long.

Niles has re-realized his large-pawed big furred-ness. He jumped off the ramp into the snow.
No way for me to chase him anymore, I came inside and locked the door.
Five minutes later I heard a knock at the door. It was him! New behavior, happy exploration. Obi
leaps again in the air, runs and slides. They kept home those lonely months without me and now we are back and together.

I am so grateful to be returned!!!

Thank you THANK YOU THANK YOU for your support in enabling me to survive that hell.
I will write more and individually, as soon as i wade through the
3745 e-mails that accumulated while I waited for reconnection.

Peace, joy and love to you all.

JanuFeb

2008-01-23T18:15:00.000-08:00

Janufeb is what the NPR blatherer said. Cold. dismal. The street for cars cleaner than the sideawlk that the

wheelchair must traverse and the old folks shufffle extra slowly and press the quadcanes down, or lean on their carts, happy for more traction. We can see the fat tub of lard maintenance man sitting in the library, reading the paper as we slip and slide to the bus.

B. is beautiful so handsome that I don't even see him, holding the door for me. And the carts that were stuffed on the lift by my awful neighbors, he yanks off and whisks me on and banters.

Yea America is going to blazes but he is ready for the rapture, so it doesn't matter what happens. When you take God out of it, this is what you get....

I hear him solemnly and hold his words as truth. Unlike the monster bibleclass lady, he carries

himself like a light of god. He endures the old folks with patience. When he removes his

hat, his dark bald head gleams with fiercesome symmetry. He is impeccable in his casual

work clothes, neat layers.

I don't know why today I see how handsome he is. Maybe because I am leaving and know I will not ever see him again. I relish his kindness, as he whisks me through the snowdirty sidewalk

to the ramp, and from the bus into the store, and then, when home, off the bus into the building. A thrill a ride a kindness....

While onlin in the supermarket Y. the incessant gabber says, gee if i ahdnt unpacked my stuff i would let you in front of me..... gee you could still squeeze in, do you want to get in front of me?

She buys tons of stuff as if for four people. How she and the fat man and the three cats fit in a space i alone find too small is not something i contemplate.... i know the benefits of two feet, of verticality...

I tell her " You always get in the wheelchair aisle"

She is stunned as if i smacked her or cursed her.

I did but not with words.

I called her bluff.

She didn't need to offer to let me in front, she just needed to not be in that aisle.

So she spent all her time quizzing the checkout lady about the wheelchair aisle.

When I got to check out I told the checkout lady that the woman was my neighbor and that

if she were any shopper, sure, she could enter the empty aisle, but since she came with me on the same bus and there -- see the bus was here to pick us up, that she

was just wrong to jump in the wheelchair aisle with ten tons of stuff...

the checkout lady didn't quite get it, but I didn't press it.... but the man behind me did and helped her pack my bag on the back of my chair.

I thanked them both.

Y. yakked loudly and nervously asking B. does it distract you to talk when you're driving?

and told stories about peeing in Italy because R. had to get off the bus and go back in the store to pee.

But as I wrote, this will end with B. making my return home, fun, I will get a ride, a thrill, he will almost mow down my slow neighbors and spin me around in front of the elevators

and smile and wait for me to look up into his handsome face and thank him, bless him and wish him godspeed

Because

2008-01-22T18:50:00.000-08:00

Someone tore down my sign explaining that the crochet workshop was to focus on making things for the KwaZulu Natal babies brought home in newspapers. This is the 4th time in 2008. Today is only the 22, Tuesday, the day of the workshop.

I thought in leaving i would be freed from the endless mindnumbing sheaves of forms this idiotic palce makes me fill out. No, i had to fill out another form. On it they ask why are you leaving.

Ha! I don't remember exactly what I wrote something short and cute like death despair disrespect disrepair....

but yesterday as i rolled in backwards to put the tokette in the machine, after waiting for it for hours because it is the only front loader and therefor the only floor on which i can wash i thought of how horrible it was that even doing it this way, the machine ate my tokette, didn't start and so i lost a wash's worth of detergent.

so today io began my because list...

because washing macines are only available from 9 whenever tony feels like opening the rooms to 8 40 pm whenever he feels like locking them up

because we must pay 1:25 per load

because we must buy these stupid plastic things and yet and stil the laundry rooms can't be open 24/7

because the recycle trash room is only open 9 to 5 Monday to Friday and officially only a part of a day on Saturday and this makes no sense whatsoever, because if you work or have any kind of life, you won't get your recycling in the room during the normal business day

what is so special about the trash and recycling room that is must be locked

the alleged safety measure of disabling the possibility of buzzing anyone in after 5 p.m. which is often the hour that medical deliveries arrive for the ill and dsiabled, only means that residents generally let anyone in a uniform who is decent looking into the building to spare their decrepit neighbors the hassle of dresssing and leaving their apratments to let someone in

of course this makes security such as it is, even less

because when the man hit the ground outsidethe office window, the manager didn't look

because the manager said I'm on the phone when the attempt to tell her the man was squashed on the ground outside her office

because the manager left the keys not lost them and so put the whole building in danger

because the tenants were never told this happened

because the good lady who gets free food for the buidling was burglered when she went to church

because when i found out I wrote and called and got my locks changed but the buidling's

locks were not changed for 4 months after the masterkey was lost

because my neighbors put up with this and did not complain but they are very willing to

gossip, get in the way, block my path getting on the bus and be loud

because someone stole my handmade black santa clause

because i had to argue to get plain potatoe chips in the vending machine and then the creep put it in the one slot that doesn't work

because my wheelchair has no camber and only one rail so i can fit through the doorways of this handicapped accessible apartment

because i can't enter the garbage chute room on any floor because is has a step down and

a door that slams shut, and it's as anrrow as the catwalk kitchen, so even if i were to attempt it,

I couldn't turn around and pop myself up over the lip. I can only enter and exit backwards,

because the sink is too high

because the refrigerator requires defrosting, another contortionist, messmaking challenge

for me in a wheelchair

because the liars at HUD never fixed the front door on which i have scraped and bruised my knuckles

Because the front doors are glass and heavy and the easy back doors are a step down

because the tenant's group was told that it can't engage any issues of import

because idiot mincing J locked the door to the community room even though on it was a sign about the Crochet class

Because crazy P had a many curing wildly in the hallway F u Fu Fu Fu the very day she had

harassed me

because the washing machine on my floor is still broken after nearly a year

because there are only two good dryers in the whole building

because the one time I ran out of checks, you wouldn't take credit and told me i had to go out in the cold in my wheelchair and get cash for the rent, though i offered to pay by creditcard

( God rescued me and spared me the fine)

because i have to pay for the tokettes in cash, a check for them is not accepted, which uses up hard to get cash

because none of this makes sense and is burdensome and oppresssive

because my friend was given a hard time for dropping off my mail

because Dorr never got the card i created that people were supposed to sign when they came to the office

because my materials were lost and I had to dig them out again and sign your stupid forms again

because the bible lady brought a baby to the film screening and the baby made noise through the whole thing

because i dropped my knitting needle and no one told me or gave it to me

because when i most needed it, the store would close early

because after they hooked me on some item, they would stop stocking it

because the 101 year old lady hit me 3 times

because my alleged friend hit me on my knees

because my other alleged friend shoved me and hurt my arm

because the alarms were presented as a feature and R told me that she prayed for God to help her off her knees after no one answered her alarm

because one of those who hit me thinks she is a good person and yet, she did not answer

R's alarm

because this is supposed to be a building for the elderly or older disabled and yet there are these stupid burdensome rules

because someone tore down the sign for Caroling 6 times, as well as my many signs for stuff

to be taken to the nursing home. Thank God for computers and printers.

Lord, I am Wounded, I am Blessed

2007-12-18T12:50:00.000-08:00

I am so hurt, so broken, so sad, so beaten up, so abused, so lacking and so in mourning.An idiot neighbor attacked
me, fighting over the laundry room. I stopped her from starting her wash, telling her i had clothes in the dryer, and strapped to my body was my next pile of laundry to dry. I removed the dry, put in the wet and as i began to fold thedry she went off on me. And to tell the truth. I on her, as the rules are only one person to the closet sized
wash room at a time... She was annoyed at me folding, but as washing takes less time than drying--- there was no way for her to finish anything until i wadone anyway. We got into it until i remembered that i was not short, but in a wheel chair. This sudden recognition depressed me and I snatched up the unfolde clothes piling them on my lap
and wheeled into my apartment--- which is right across from the laundry room. Hers. too is on this floor, so yes she could have marked her claim to the washing machine and retreated to let me just fold and fishi in peace, but no.

So I arose early, ate early did my ablution early early so that when the knock on the door to change the locks came, i would not wirthe and roll back and forth, I would not be stressed or rushed, but gusee what--- they won't be doing the locks today as we ere notified they would be, and I don't trust them nor want them owrking on the door locks
when I am not here.

This is not paranoia as the lock change is occasioned by the losss of the master keys and further, the office door
being left unlocked subsequent to that..... and remembering how in the past, they just opened the door on me twice, while i lay in bed undressed... see I thought this was America and that people couldn't just enter you space unannounced....

but no if you are disabbled, not if you are cripple, not if you are handicapped... for me this is no differently abled, this is jacked up, this is pain and humiliation

YET YET YET o Lord, I have been rescued and rescued and rescued for that RESCUE and to my RESCUERS all I
give Thanks and PRAISE for hearing my abject need and responding to it... especailly as it did not come from anyplace expected or even imagined and it has been terrific and kept me from killing myself as I did consider last year as I went hungry and worried and was hurt again and again and abused by the medical establishment o thank you Lord for that part being over... the pharmacy that wouldn't ever set a time for delivery thank you for freeing me from their meds! And the MONSTERS at Visiting Nurse Service at Rochester, that stole money and time from my care that I had to pay for and treated me horribly, o what hell that was, deriding and chiding me for asking for the aid who worked, calling her and having ten minute conversations with her while she was working with and on me... and through all that working and working, puttin in all thos UNPAID hours, trying to move things forward, only to be abused and exploited by my boss.....

and the shock of it all, to enbcounter this monstrousness at this stage in life. to hold the shimmering dream of what I aimed for--multiple careers, family, community and worked for and achieved, to have it all dismantled and
derided and denied....

Lord di I need these lessons? Didn't I work hard, get three dgrees, put in 60 to 80 work weeks, love and marry, and love again, want babies, create a home, devote myself to my art, to organizing, to human rights, to being
good and not turning on my brethren or sistren for the coporate tokens. And maybe yes, this is what has spared me total and abject destruction, maybe that is what has enabled rescue. But still I yearn for what I had-- moblity , the ability to plantm y garden and mail my letters walking up the hill to the post office, to go and see my family... o please let me walk again so i can see my father before he forgets me totally... he only remebers me a little,
I am a reflex, and he tells me everytime we talk "To thine Own Self Be True". I tell him the stories he told me and rhen he remembers protecting the store, selling applesl, how Flrrie was the rough parent, she might take a broom stick to someone. I love my father so much. I am so much his creature and my mothers and I feel in this frailty I fail their great bright dream. And i want to help with him, spell his wife and take care of him because he was such a great and tender caretaker. O god! He was so good with me as a teenager, as I suffered my periods, he understood.
He knew I inherited my shyness from him along with my hayfever and flat feet. He kept my mother and I connected and relating until I fell in love with her again. He didn't mess up at all at all until my divorce, which is probably why it bothered me so much....
Anyway the blessing of his huge love and understanding is another reason I haven't offed myself. HE worked too damn hard for me to toss this away and he survived Korea nad Harlem and th post office to create his blue heaven....

The radio was playing song for my Father, by the way, which i started sining, so i left my stupid lament to at least mourn and yearn for something wonderful, to sit with my Daddy- O again.

Crow Sky

2007-12-09T11:49:00.000-08:00

It was stunning and a bit scary. Though we couldn't hear it, the real time visual seemed to fill the ear with the flapping of wings. They were massing, they were moving and they weren't in the lovely v phalanx of geese. I don't even remember if there were cas. but they came and broke, it seemed, against the edge of the buidling some dashing toward, some near grazing the window.

The cats watched, too....

I read that crows do this for reasons we don't know. They mass on a psot in late fall in late day... I never saw this before and I haven't seen it again...

Letters I wont Send 2/3

2007-11-05T13:57:00.000-08:00

dear new no longer friend,

i so wanted to believe we were friends. You pretended we were.

I hate that I counted past three.

I am sad that you revealed you were the monster that interfered when i was new here and washing, that you then derided me, saying some people
just don't appreciate help, when all you did at the time was frighten
and interrupt me. That you, going blind, think that kind of behavior was and is okay,

Then the time you hit me on the bus and hurt my knees
like it was a ha ha and it wasn't. It hurt through the paralysis and added to my constant pain.
How dare you!

And so slowly i realized that i was just a tissue for you.

This is your homeland and your family is near. I foolishly shared the little i had, the little access, the freebies, the extras.

And slowly it has dawned on me, that you share nothing, really. Not the family you talk about, nor even the opportunity to pick something up when your friends take you shopping.

My lack is mobility, not insight or feeling. I am so sad to realize how jive you are.

Letters I Won't Send 3/3

2007-11-03T15:11:00.000-07:00

I suddenly realized that i should post these here on my blog. The miscreants I write about won't read them, so why not?

This is the latest one:
dear bible study group,

i won't return. i should have left as soon as i realized that it was organized by the same self centered biddy who brought a baby to our thursday matinee and remained, right in front of me, who could not run away, with the screaming, restless, nosy armling throughout the whole movie.

And i should not have stayed after i was left to struggle in the door unassisted --- aid only being offered as i struggled to replace the chair i had to move to get in the door

and i should have left when i suggested the door be left open for bit, in case anyone else was looking for the meeting as neighbors in the other half of the community room were partying and not in the mood to direct anyone next door.

Because no, they did not tell me the meeting was on the other side of the divider and why make finding it hard?

And i won't come back, because no one asked my name nor told me their's
only aksing if i had a bible with me and if I had a piece of paper. And yes, I came with all of that.

And i won't come back because I was not asked what i migh know or want to know

And i won't come back because we actually read next to nothing, instead only glanced at verses while the old man spoke from another place and time

And i won't come back because i dropped my bible as i packed up and in so doing lost my tiny knitting needle.

and no one called me back for it, nor picked it up and so yes it was there the next day, a white arrow on the dark floor, pointing toward the door.
__________________

Learning to Drive Again

2007-10-18T19:45:00.001-07:00

Medicab... o... what money will do...imagine a service where someone holds the door open for you and you are assisted on and off the vehicle.... you are assited into the building....

o god! this brings tears to my eyes! I realize that i didn't imagine that it was hard.... that it is hard... and i was not able to afford these samll but energy saving and fear mitigating niceties. I get to use Medicab for my VESID appointments whic I had forgotten and only remembered in time for these visits..... what a difference it made to not worry about being late.... not that i've ever been, but not to worry to not worry!!!! and thento be able to call the cab because i finished early!!! vs sitting around for the hour... o mi gosh....

but i still ache, quake with fear . it was hard hard hard and i was nevous and firghtened and i feel awful about not being able to drive with my hands and i wrenched myself getting in and out of the chair.... though i see it is possible it is possible... i just don't want to have ot keep going through this hard scary stuff it took me so long tolearn the little i know i dont want to lose it i dont want it lost to me i want to be able to drive my car and this says i wont

i ache

Fish Synchronicity

2007-10-12T16:21:00.000-07:00

There is a special shopping bus on Wednesdays and
my neighbor shared with me the two new fish he purchased
at the pet store next to the supermarket, on our ride home.
I knew it
was synchronicity! Sadly, he didn't know the name of
the fish, and i was newly acquainted with an array of
fish tank fish as I had read about them to carve some
for a rubberstamped fish swap.

Wow. we usuallally don't talk and the beautiful
Brian, the only driver to ever ever assist me
and assist me he does, was not there..

And still there was this twinkle of magic... I could chat about tank conditions and ask about
plants and walter and popualtion and size and just from the reading i did to make
some art.

If i can remain motivated and in the glow I will make him a couple of images
from the stamps..... I've carved a broadbill swordfish, an oscar, silver dollar fish
and angel fish. This carving has connected for me , for this moment and so I've started
a carving blog: Image, Carve, STamp

Criminal Neglect, Criminal Indifference

2007-10-02T10:46:00.000-07:00

Outside the building, the smokers gather. Other times it's the watchers and the gossips. there was a time when I would welcome such community, but generally it is the least attractive, the hideous and the negative energy radiators, squatting and sprawling like bugs and reptiles in the sun. This is perhaps unfair to reptiles and to lovely insects. What irks me is that they make entry and exit a chore; that I must run the gauntlet to get through, that there is a lovely courtyard of trees and tables and benches to sit in, that they choose the small and difficult to traverse front entry to occupy.

Now this crew of gossipers said nothing and did nothing about the criminal negligence of our building management. Even as I write this I know it is wrong to compare or link their gracelessness with dangerous indifference. On Saturday a neighbor called to let me know that N., our building manager lost the master keys to this 22-story apartment building over a month ago and told no one, well, no tenant.

I immediately got on the internet, got on the phone, called the police, the crime line. I also called our weekend emergency number and demanded that my lock be changed. The guy said "O I thought that security situation was resolved a month ago" thereby affirming that what I heard was true! There was a loss, a breach and it was a month ago.... He called me back to tell me that the building had 200 locks on order and that if I replaced the lock myself, I would not be reimbursed.

I wrote HUD, the Democrat and Chronicle, WHEC-TV, the Center for Disability Rights. Monday, my lock was changed.

I learned that there was an attempt to get into someone's apartment and the key broke off in the lock, that another tenant's apartment was ransacked while they were at church.

How hundreds of people's lives and property could be so disrespected is beyond me.
We get a monthly news flyer, which held only banal meaningless announcements:
Halloween party, don't wash on weekends if you are retired.... not a word about the security breach, no warning, even....

And insult to injury, we are facing a rent increase on November 1, and received
letters to this effect. Again no notification.

A week ago, I received a note that there was a package for me. I entered the open door to thee community room and went into the anteroom where packages are kept. As i picked up my package the alternate building manager, S. apppeared and told me " You should ask us to get the package for you. You shouldn't be here"

The door was open, I told her. Well, we're responsible for the packages.
You dear reader, may already understand the insult and inanity of this. How could I take what I did not have access to? Why would I be upbraided for retrieving my own mail?
Let me underscore the insult of this by saying I'm in a wheelchair, moving slowly.....

And, on reflection, this .....person could see fit to berate me for entering an open door to pick up what was mine while she KNEW that access to the ENTIRE
BUILDING was in the hand of person or persons unknown. Midtown Manor is 22 stories--- about 175 apartments..

I cannot think of words harsh enough for this hypocrisy, this crass and criminal indifference, this oppressive, dangerous, nasty arrogance.

If you are of a praying mind, pray for my idiotic, elderly, frightened, weak neighbors. I told a woman with MS about the loss of the keys, she said she knew, was frightened and had discussed it with her psychiatrist.

Why didn't her psychiatrist call HUD, the Housing Council, the police?!!!!
Or advise her to take action?!!!

I am grateful, grateful for my Mac, for my access to the internet, for the ability,
despite my disability, to communicate.

My Poetry Reading

2007-09-12T16:19:00.000-07:00

The REading

Genesee Poetry Reading Series 9/11/07
Intro
PraiseGiving
1. Seneca
2. After 9/11 in the Small Town
3. Above
4. Aint gonna Study War No More
5. Worship
6. Family
7. Daddying
8. Dementia
9. She knits Acrylic hosannas
10. Vegetarian Reflects
11. Bad Movie
12. Health Care
13. No Young People Here
14. Mouse Song
15. For the Tree
16. Continuum

It’s so curious to me --- that, as when I send poems out for anthologies or magazines and they chose my least loved poems, what people chose to mention.

I loved the story the man shared with me about visiting a home he had lived in for 8 or 9 years at which he had planted pine/fir trees . #0 years after there was a forest. So he felt my Tree poem.

I hope my catalpa is still there, still growing.

I squeezed out several poems in getting ready for this reading: Two new daddy poems, Above, a new 9/11 poem, For the tree and I finished Continuum. So 25% of what I read was fresh off the press.

I read with Patricia Roth Schwartz and the work was complimentary-- a delight. I was glad to be able to enjoy the reading... I like going first so I can relax and listen to other poet.

The space was a small lecture room, the new performance space.... the fireplace still there, but half the large room filled with risers and there were lights, so it was reall theatrical....

I bought a yellow, three-hole binder to match my blaring taxicab yelllow crocs. This was a good move.

Marlene remembered and brought a very handsome music stand..... hmmm i have a gorgeous brass stand that Genny, my departed Aunt, gave me, that i have used for readings through the years... I see it in my car trunk, but I'm not sure where it is.....

Thanks to all who have supported my continuance. It was so wonderful to feel good, to be so immersed in the moment that had nothing to do what what I couldn't do, but everything to do with all
I be and am and aspire to be.

Max Roach Ascends

2007-08-17T16:06:00.000-07:00

O! listening to Terence Blanchard on NPR I just heard that Max Roach died!

MELODIC MAGIC Man
socially conscious innovator
creator

I last saw him playing with Toni Morrison reading and Bill T. Jones dancing at Lincoln Center.
It was transcendent.

I first heard him in my mother's womb.
I am so grateful he was here.
I called my Daddy to mourn with him, to celebrate with him.
I told him Max had been sick, in hospice, that he was 83.

My Daddy taught me so much so much he shaped me, gave me ears, playing Max and Clifford Brown and dizzy and Miles and
MJQ and sonny rollins and Ben Webster and neary every name I know he taught me. He was a connoisseur of all things hip which in those days, were deep, spiritual and rigorous. And losing Max feeels like losing family, someone Daddy dug that I dug them too, then and always, because Max went out ( as in music) as I grew up. And I was demonstrating for freedom and agitating and his music affirmed all of that and more.

O Max! Thank you so much so much so much for creating such connection
and making the bright hot cool light of our yearning
and dreaming and striving,
manifest.
Bless you.

Dead Man Falling

2007-08-17T16:00:00.000-07:00

Someone died at 475 East Broad Street Midtown Manor
My neighbor saw his brains splashed on the ground
after we returned from the special shopping run
provided by medical motor services

I had just directed her attention to the courtyard . she's new here and I was telling her what a lovely place it is during the day. How quiet and peaceful.

and she said o i thought i saw a body there
she did see the body and more
and she alerted management to the death just outside their office window.

When she went to tell the manager she was told "I'm on the phone, I'm busy"

this is such a time and place of despair. was it the environment or the person
personal tragedy?

He couldn't have been pushed says the maintenance guy because the balcony rails are 4 feet high.

He didn't live here, he just came here to die.

He may have been shot and pushed someone else said. When they finally turned him over , two
hours later after lying with his brains splattered on the concrete, when they turn him over the coroner
a she, jumped back I was told.
It's not just the brains, it was the stomach or pelvis, gut spill.

the police had said he may have jumped from the balcony on the 12th floor...
is the door always open they asked me after knocking urgently on my door
more often than i like i said
because i have a sign asking that the door be kept closed to keep the bugs out

i digress.... someone either jumped or was pushed today between 1015 and noon.

by the afternoon i learn i was not from my balcony but higher up. The cleaning lady saw his body fall past her as she ate lunch on the 15th floor.

Debbie on the second floor heard him hit, thought it was a gunshot.

Why was it left for Katharyn and i to see, I don't know. Had it happened only moments before? We were the last to enter from the shopping group as I in the wheelchair am the last one unpacked and unloaded and she waited with me... In fact I had even checked my mail first before pausing at the elevators to gesture toward the courtyard.....

this early evening i called Lynne to see how Katharyn fared and we decided to go downstairs to the site-- i with prayers and sea salt for cleansing and she with incense. She had already lit and left a white candle and there was a white rock with a wreath of leaves and her candle, burning, invisible to the eye but visible in the glass and this i saw with discomfort was right in front of the rear entrance.... the wide glass entrance

and people tracked right through his blood and flies still buzzed and i saw the wavy white lin of salt
i had cast as i rolled and prayed.....

we spoke with Dolores a tall long bowlegged woman like a walking sculpture with pink and white nails and a short thick fro an african bracelet on her ankle she was distressed and knew that Sam
the deceased had attended East House, a program not a place and that he lived in Savannah Gardens, the units facing Midtown Manor that framed the courtyard and her plump pretty little girl contributed a small branch to the shrine and then a woman who looked to me to be in pain but who smiled named Sabrina came. She had many tiny teeth and was dressed all in black .

she had placed the stone and had come upon the dead man and had watched the fireman spread his blood with their hoses, sadly she said washed up on the building.

She asked me if I was Wiccan. LOL! and she appreciated how there were three women holding wake
making peace in the space.

I worried about the young mother who had seen him fall. Dolores said these young people treat it like watching a movie, not like you or I. after i had suggested that maybe the young mother might need to see someone after seeing such horror.

I spoke of my godmother, a woman I loved and respected and admired, who losing her sight, wrapped her head up and leapt. She had been a psychiatric nurse and so I guess her brains weren't spalltered to hosed off the sidewalk.

Did the children now thronging the courtyard see. Dolores was concerned that no one had tracked Sam... someone should have been in touch with him, I confessed that I had considered doing the same thing but remained, if only because so many worked so hard for me to be here even in this half life.

Last night i had not slept well. Jacquie told me the same. What good is prescience, if we could not act, send out comfort, put out the fire of despair, discomfort that woke us in the wee hours.

Though Sam lived in Savannah, I head he came to Midtown Manor to say goodbye to a friend on the 18th floor. Who was it?

Sabrina thanked us. We thank her for her good intention. She thought it might have been a friend of hers, she couldn't tell from the bashed up body. But the detectives told her no it wasn't.

She said she wished she had met me earlier. Earlier than what I wondered. I asked her if she was in pain and she said yes, but she was blessed because she could still walk, unlike me.

Too true.

Making Paper in the Small Space

2007-07-14T15:12:00.000-07:00

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

2007-07-08T11:18:00.000-07:00

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.

Justice League, Eagles, Struck, 5 Dead Girls, ArtMaking

2007-06-28T20:46:00.000-07:00

A blow to the body by the Supreme Court.

A night so hot, I arose at 4 a.m. watched TV, made bookmarks, and worked:
moving, organizing, cleaning.
Making pulp.

Surely the Justice League is not for kids.
Black female shape shifter discussed Green Lantern's undies drawer with Hawk Girl, his ex.
I've seen his underwear drawer Hawk Gril reminds his current lady. They just saved each other and the world after being assigned together. Martian Jahn tells Green Lantern that contrary to his opinion, he does not take his love life into consideration when making assignments, but we know better. No better way to bury the hatchet, er, claw or magic mace than into a villain than into each other....

Yeah so not for kids what with partner swapping, and Lex Luthor possessed by Brainiac and a fat Oprah meets Condoleeeza Rice figure whose voice sounds like CCH Pounder, manifesting authoritarian paranoia as the US black ops group (sic)
led by her, clones Supergirl and makes several batches of mindless mutants, for you know, just in case the Justice League goes as rogue as the government, what with their protective floating death ray pointed at the planet.

And pre manifestation of the real devil inside, Lex Luthor strives to use his ill gotten billions to become president.
This all to irk Superman because like those we know too well, he doesn't want to govern, he only wants to rule.
Yes, it comes on too late for kids in school, but it's on the kids channel.....

++++++++++++++++++++++++++++++++

Today is eagle day 198 hacked eagles released into the wilds of New York have set up breeding territories and raised young 1988 meant they had sufficient nesting pairs to stop hacking, no more need to hand rear the young. My cat stares. To see an eagle against a powder blue New York sky is a tingling thing. My thanks to those who worked invisibly so hard to restore a balance undone. We need to take a close and serious look at what the future holds. Have we sufficiently protected wild places? I so wanted to buy a bit of wild. A piece of Steuben hill, a glade with a pond. The amazement of where i lived in that 5 minutes from my small city lot I could be at some critter rich expanse. 5 minutes straight up would land me in Oz. The eagle is safe from extinction for the moment. Good things still get done.

******************************************************************************

Yesterday was a trip. The old woman Mary leans over and says to me, isn't Brian ( the medical motor services driver) quite a specimen. He's so good looking. She pauses. I don't believe in objectifying people I say coldly and deliberately. She irks me to no end, intruding on my quiet with her inaninity that has now veered to an ugly lust.
I didn't objectify him she protests.
You called him a specimen. I don't like that language I say.
She speaks a bit loudly for conversation, but this i put to her eroding sense of hearing. Later, Brian suggests he heard the whole exchange when he comments from the drivers seat, while the bus is in motion, on something else she has just said to me, something about the bus running on July 4th. Ha! I want to laugh aloud. You imp. So you are letting you know you heard. So doubtless he heard.

My neighbor buddy showed her butt . Late again, not there as the bus was ready to leave, this time I insisted forcefully that we not leave her. That last time I was overridden by another passenger who had insisted that she saw J outside and so J got on another bus. But J said she would only ride with Brian and Brian and we were all packed and she was not there.

C, newly returned from time in the country spelling her sister at her sister's bakery volunteered to go inside and get her. Brian emerged with her grocery cart. packed it on the bus and more minutes pass before J returned. I was pleased that i i had made sure we did not leave her this time and annoyed at what seemed to be an emerging pattern of lateness.... after all all these older old farts and decrepitudes including wheelchair bound me, were packed and strapped on the bus....
why was she tardy?

Anyway that was not the butt showing. The but showing was that she hit me so hard on my leg I felt it... a slow yelp.
So more sensation, but not good sensation and then i realized where she hit me--- on my knee.
What the? I complained but decided not to go off, especially as I had to ponder the sensation. Later, however, I became angry.
What was the context? A flurry of negative anticipations... :"you won't like them, you'll say they suck" this all about something I had not seen. And I asked her to to stop it and then she hit my knee or knees... not sure if it was one or both.

What a drag. This of course is a no win. If I like them, then there is disbelief, If I don't then this is pressure to not render a negative opinion, though she doesn't know me.... this is really incentive for me to say " you're right, these are some whack awful ugly things." But the evolved me, would probably not say anything and just be annoyed at being silenced.

So I've decided a couple of things. One is distance. The other is I pass too well for a well person.
Earlier on the bus, hideous Mary had reached toward me and I was alert and said don't touch.
And she said, O I won't.
But I had seen her put her filthy hands on J's ear lobes and finger her earrings and then have the nerve to ask her how often she cleaned her ears.

When they asked me about earring cleaning, I asked her how often did she clean out her belly button.
Everytime I shower she said .
Well that's how often I clean out and around my earrings.

The presumption is that I can be jostled, jollied, nudged---- meanwhile no one knows or understands what's wrong with me, so how can they think striking me is okay?

They don't think about it at all.

While in the supermarket, contemplating the baked muffins--- I sought pistachio walnut and there weren't any. A kind woman offered to place temptation in a bag for me and we joked about it. An old man said too bad you can't taste it before you buy. I didn't quite hear him at first and he repeated himself. Then having my attention he told me that he had just come form the doctor having made himself sick with grief.

Five young girls died in a head on collision with an SUV here. They had all just graduated from high school. He knew one of them and the grief was putting himself in the place of the father of one of the lost, who was a friend. And it rocked him.
I expressed my condolences and he brought me to near tears and satisfied and saddened he had done so, he thanked me, apologized and bid me adieu.

Now oddly enough he walked by just as the bus arrived outside Wegman's and he approached and began the story again, but without the introductory joke or connection, he just began replaying the tape, grabbing his protruding belly saying where the pain lay.
I told him, you told me this already. I am so sorry for your pain.
It hurts he said.
I know ,I said. Feel better.

Gosh! This is so like my New York City youth. Old people just telling me their stories. Which i don';t remember and didn't even always understand. They still do it!!!! But now I know what they are talking about. NOW I KNOW what they mean.
Why do they still choose me? In the chair, I can actually move further, faster away, LOL!
++++++++++++++++++++++++++++++++++++++++++++++++++++++

Clearing out under the sink, mainly to get the vat i knocked against the pipe and it sprang a leak. It was a huge accident waiting to happen. The hole revealed a totally rusted curved. Thing is, the office told me someone would be here immediately. 3 hours, and the need to empty bladder and feed myself later, no one appeared. I called left a message of anger and complaint, not so much the lack of immediacy but the failed expectation..... it's not like any motion away from ready to answer the door can return to ready with any speed... A half hour to pee. An hour to eat.....Solution
put a sign on the door.

Anyway late afternoon the heat finally dissipates. And there is a small bit of homecooked sumptuous made possible by splendid summer. Vine ripened grape tomatoes, tossed in the pan to add sweetness to the fried onion, garlic, basil,garlic salt, pepper, fresh uncut but trimmed lengths of sweet green beans, covered juices of plant succulences. This to moisten the crab fritters, whose batter I made yesterday, but could not bring myself to endure more heat. The tiny hand rolled balls puffed and while delicious, it was not quite the effect I was striving for..... next time add more stuff
to the batter--scallions, red pepper-- yes that's the ticket.

Anyway, this was the sweet redemption of yesterday's trial. Wondrous munchies: wasabi peas, dates,
akmak crackers, hummus, vanilla soymilk for my coffee, an almond croissant for breakfast, ginger beer for dinner and the ability to do a simple saute, even though wheel chair bound.

***************************************************************************************

Another gallery I had work in has closed. Today I got a call from a woman asking me how i would collect my work. It was still the hot hard moment when I was yelling at the cats for being under wheel,too close and cloying.... Anyway I almost cried, another reminder of what I've lost... and more to lose.
She asked me about my job. I told her Iost it as a result of my condition and told her about my condition and also how I didn't even know where to have her send stuff. Home? I'm not there to collect it. Here? Where would I put it...

And she was so so kind to say she would watch it and call me again in August. I did nicely at the gallery, I believe I sold most of what I brought to them and might have sold more, had I been able to replenish the objects....

***************************************************************************************

I so want to go home and make things. I reach for tools that are not here..... my lost to me friend has yet to return the moulds and deckles I lent her, her final act of petulance. She had offered to return the stuff six weeks ago, now. since I had said to leave it in the office, refusing to put myself through another one of her non appointment drama ( she's stood me up 4 times, and is always late or early, never at the agreed upon time) I sadly do not have my best tools at hand. Still, I have
a small M&D and cooked everything I had been saving in the refrigerator and spent hours blendering and rinsing and tomorrow I will venture down to the community room and pull some sheets.

Today, just to play with pulp, I cast some houses, All the little tricks to remember. How wet the pulp should be, how to then layer and extract the water, with screen and sponge..... the thin layer of vaseline on the mould, finger on, swiped of.... ahh.....

And then I remembered how fond i was of methylcellulose for my pulp. and how i don't have any.....
so this will be my first waterleaf in a long time...

may i heal,

Saving Money I Don't Have

2007-05-28T16:32:00.000-07:00

I'm just beginning to feel a bit better. Am reproing TONS of receipts to get my rent reduced.
I got a doctors letter, handed in list and receipts and it wasn't enough proof....
So now i've spent another day and a half, scouring and gathering and reproing....
After working on this about a month in winter.

I was about to throw my hands up on this--- she said my first pass had only yeilded $1930(!!!)
So I've got an immediate $600 with the outrageous cost of the lifeline service and another $600 with home health aides....
(sigh) it's some weird formula of more than 3% of income.

The only upside to this is perhaps being able to use this information on taxes as a deduction ( the tax lady will let me know, but now i have all the categories and receipts organized
_________________________________________________________

I went to VESID vocational and educational services for individuals with disabilities last Thursday,
I got there waaay too early-- i didn't realize it was about 6 blocks away. anyway there as a woman who kept entering my space. After the session, conducted by a woman painful to look at... rivulets of fat broke and pillowed every limb. She kept tugging on her green shirt to pull it down. Her stomach / pubis bulged as if she were naked because of all these lines of fat and yet... as overstuffed as her skin was with fat, she was not a "big" person,,,,, she just sat in front of us and spoke for about an hour.....

Anyway I had moved away from a woman twice.I fled to the building lobby to fill out the forms and await the bus. she came down to lobby and over to where i was sitting and dumped her bag in the chair nearest me and dug around for keys.

Then she said Hi my name is _____.
And i said have a good afternoon
and she said aren't you going to tell me your name.
So I stopped what i was doing, and looked up at her, looked at her for the first time in her face
and said NO
and then turned back to my form filling

and she stuttered o0ooo-kay.
What the?

I told my neighbor this story and how i realized this woman kept trying to crowd me - in the waiting room and then later in the orientation room and my neighbor told me I should watch out (semi joking) and that this VESID served a lot of the AA and exdruggie folks.

They offer a lot--- training, hand holding, house fixing, driver training... told a story about helping a guy learn to make neon signs, paying for license fees....ooo.. what can i think of to get a license doing?
I would love to learn to weld --- arc/ TiG welding, but am not sure it's something i could do sitting
So my thought today was to ask VESID to help me train as a psychotherapist.... and i could specialize in poetry therapy.....
maybe gerontological psychology if there is such a thing?

Always Something

2007-05-28T16:12:00.000-07:00

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 Money

2007-04-29T13:00:00.000-07:00

I need....
to walk again
always be clear , I need help to walk again and then help to make money so I can buy my healing....
there's ways to help me walk again and if I had money, perhaps I could buy the means

Soo what I am doing now?
Just finished taching a workshop at the very institution from which I was fired. See, Universe, I'm grown up, I did not let my piqque or pride stannd in the way of earning a few more sheckles, thought th e effort was frought with--- argh!

I was stuck on the #%$%#$ lift!!!! And then found out my workshop was underpriced and then this week.... thee lift went up and down twice before allowing me to exit! ARGH!!!!!!!

Okay so offering workshops--- like gambling to then do a TON of work..... I wasn't told the workshop would open until
days before, fortunately I have thought long and deeply about the topic and taught it before.
What elsr to do? Make things. But the one place that bought the things I made... has taken oh.... six weeks to pay me the mere $90 worht of good theey purchased!

What else to do? Send work out. Sorry to note that nothing has beeen accepted of late.. o-- yes a pone,but no pay for that
and not in a sufficiently auspicious venue. Why do all these palcees now reqquire you pay to be rejected? Becuase peolpe will pay to be rejected and the venues pocket the cash.

What else to do: enter contests. Here's my latest contest entry:

Delicious dishes make the most messes. The red splatter of tomato sauce, leaping out the pan, the hard fried bits of onion, the scummy slick of olive oil hardened by heat, and the crusty bits of green pepper,left a multicolor mess around the made- from-scratch spaghetti sauce. Bounty was used to gather the bits and rub the first layer off. Then dampened, Bounty was used to scrub the spills all away with scouring powder. Rinsed and wrung out, Bounty finished the job, wiping the white stove top clean again and leaving it pristine.

What else to do:
Cry and pray.

More Trials and Tribulations

2007-04-16T17:12:00.000-07:00

the city - Corning-- will impound my car by wednesday
it has a new reg about cars without license plates.
i *just* turned in my license plates so i wouldn't be wasting money paying for a car I can't drive
so just as i recover from one mess here's another
even though my car is in my own driveway....in my driveway in my yard

arghhhhhhhhhhhhhh

my friends rapped to the police to get a stay of execution--- they were going to impound my car today!
i called the police and they said that they would give me some time but not months
and that staying under a tarp wasn't good enough
and that staying under a tarp in the carport wasn't goood enough either
that it has to bee in a garage

so it seems that i may have to reregister the car--- that is pay again for insurance
or pay for it to be housed in a garage....
i've got to figure out which is cheaper.....

____________________

i've written the city manager:

Dear City Manager,

I was stricken with idiopathic transverse myeltis and spent 2005/2006 in a hospital, a nursing home, rehab, and now in an apartment in Rochester, while I try to get my home rehabbed for wheelchair accessibility.

Just last month I turned in my plates, as I was paying for insurance and not driving my car.
My car is in my driveway at 343 East third Street in Corning. It is a Honda Civic EX 4 door sedan, in great shape--- a 1995 with a mere 51,000 miles on it.

Yesterday my friends who assist me with my home told me that the City had tagged my car and that
I had to either get plates, remove it or suffer a fine and have the car impounded.

This is a difficult time for me. I lost my job because of my paralysis, I'm scraping by on social security disability and making ends meet is more challenging than it has ever been before.

I quite frankly, don't understand this law.
I own a home it has a driveway and a carport but i was told it was
not sufficient to have my car in my driveway
not sufficient to have it in the carport
not sufficient to have it under a tarp either......

The the only solution was to have it in a garage, or with plates..

I am asking for time to try to find a solution.

I spoke to the police and they told me I could have some time, but they couldn't say how long.
Since I am making arrangements and inquiries, this will take me some time.

Could I have until mid May ?

Thanks for attention to this matter.

________________________________________________

My alderman said he will check into this.

Another Grey Hair Day

2007-04-16T17:01:00.000-07:00

My first workshop-- Myth and Transcendence in your life story--- went well. 7 people signed up 5 people were there and the time flew. I arrived at 9:45 and so had time to make the many copies of the 8 or so handouts that I had.

I chatted with Robbi who had brought her adorable 7 month 7 pound poodle, Henrietta. And when the LiftLine bus came, she held the door as I entered the lift.

Where I was stuck. It started and stopped. And the door was unopenable and we both turned things on and off, pushed buttons and levers.

I was afraid I wouldn't get home--- more than the fear of stuck on the lift in the airless shaft, I didn't want LiftLine to leave without me and have me be without a way home.

I asked her to call 911 and within 2 minutes the handsome men of the fire department were there.
Many--- like about 5 guys, LOL!

They finally listened to me (vs. calming me down) and slid a metal thing to open/unlatch the door. then they carried me down the stairs and I got on the bus home.

So now I faced yet another fear--- being stuck on the lift..... the the bad part was I forgot my cell phone today, so if it had to happen ( vs any of the many times I was left alone or arrived alone at W&B) it was good it happened this way.

Health Care Costs

2007-03-25T17:42:00.000-07:00

why does the same level/designation of visit to the doctor's office cost $85 in February when it cost $70 in July?!!!
I asked the billing department this. I was afforded a discount of $22--- because I told them I had no insurance and then was
salpped with a $10 fee for not paying on the spot.

I was not told/ or asked to pay on the psot, I was not informed that by not paying on the spot, I would be slapped with a $10 fee.....

*********************************
but this is just another of the how the #@$$# could I have known, and yet I SUFFER suffer suffer for not knowing.... I am now
heading toward a month of being unable to go anywhere because unbeknownst to me my LiftLine access expired...There is nothing I can do to hurry the process of certification.

Now what the heck might that entail, having obtained certification from my doctor that indeed I am paralyzed?!!! this just breaks my heart again and again this incredibly casual cruelty--- ah yes, they shoudl have notfied me, but their lack of notification does not thing to aid remediation. I can only think that there is some reason for this. I've not been out in the path of something
and so i keep myself contained, quiet.

***************************************

I am irked by the "why can't you's" ( why can't you use thee electric wheelchair? Because I can't get in it!)
but i was so affirmed when my friend in the nursing home asked about my aide. What aide? I haven't had an aide since July!!!!

I would so like to have had help, but i couldn't afford to pay $20 an hour with a two hour minumum for the last chore
I could not do--- laundry and to pay $0 and still not have clothes dry....

So i ride my garbage downstairs in my lap Mon to Saturday to toss out in the garbage room that has now become hazardous
with refrigerators on dollies. Sunday the room is closed and so it is my day of rest.... ahhh the cat sleeps as near the wheelchair as he dare, his tail tucked in but comapanionabley close...

I am not alone in this suffering and I cry for them, this is not the life they signed on for, no yard, no stairs and levels to race,
but they forgive me again and again, but it's spring, they look at me likke cam they look outside.... we would have sniffed the snow melt, we would have ventured out...

i dreamt of being instructed on how to move from one palce to another by an alien. I hope this comes true.

Smacked AGain! LiftLine Denies me a Ride!

2007-03-05T14:00:00.000-08:00

so i call to book a ride to see the social worker on monday
and they tell me i cant book a ride because ive expired
i expired on feb 28
and i need to be recertified as in reapply and it will take 3 weeks and i need to
submit another picture
and no they can't extend a TEMPORArY permit not even to allow me to take one trip on monday and don't i know that the regular bus has a lift just like liftline though they don't know if it stops anywhere near where i am going.....
and i should have known this because it says temporary on my pass....
my pass?
yes the pass you are supposed to present to the driver...
i haven't looked at that pass for a year, because the driver already arrives
with my name and information...

why wouldn't you notify me that my time was up?
to which there was no answer--- i should have known what i could not have known

so once again, i'm up shit's creek without a paddle...

there is the medical motor service which put me on hold and hung up on me, but i think they are
$25 each way... the other service is $65... they rely on medicaid to pay, but sine i don't have medicaid , it would pay twice thee cost of a doctor''s visit to see the doctor!

Lord, give me strength!

V Day at Midtown Manor

2007-02-22T18:45:00.000-08:00

our V Day party. Very sweet with door prizes, cake, cookies and potatoe chips, dip, drinks .....yeah, fun. The crochet group was the talk of the room and I tried to get other people to say they would come and hang out with us--- even to do other needle/fiber work.

I'm going to try to do a play about this place... it is so alien to me... i know i am here, but feeel so disconnected and wierd
with listening to the radio and how peopl in Rochester talk about Midtown like it's on the moon

the lead paint ordinance
trying to get an italian village as a attractor to get people to visit midtown
this alien NET neighborhood empowerment teams
connect the Amtrak and the bus station
Rennaissance Square

my house is hurt

2007-02-16T17:00:00.000-08:00

Last saturday my wonderful neighborfriend saw an alien ice formation on the side of my house while she walked the dog.
Soon she called Karen and Jinm, they had the fire department pump 2 inches of water out of my basement. A pipe burst....
and this despite paying $100s on gas heat each month..... WAHHHHHHH! okay so i called insurance who said call Service Master and the plumber..... the plumber said ahhh the furnace was damaged in the flood and needs fixing....

Wonderful Connie told me:

The CAC guy was no where near as resourceful and knowledgeable and just
plain willing as Jesse. Jesse not only came back, but got the CAC guy to
come back and together they fixed the furnace. (I stood there watching,
feeling like a girl. Sometimes I think I'd like to go on the job with Jesse
for like a month and learn everything I can.) They told me to leave the
heat up very high (around 80 degrees) until Tuesday morning when I will
bring it back to 65 degrees. That's what you had it on, right? This is to
make sure all of the pipes are thawed.

I know that Jesse has two suggestions for your pipes: 1) until you return he
suggests "winterizing" the pipes by putting anti-freeze in them. It may be
a cheap and easy solution for the meantime.
2) He expressed concern over some old cast iron pipes and suggested that now
might be the time to replace them since other repairs will be needed as
well.

As for the rest of the house - Service master gutted the kitchen and pulled
out the wall behind the sink, the sink itself, the cabinets, the ceiling and
the floor. They've also pulled out the ceiling in the dining room and the
living room. I have to double check about the room all the way in the front
of the house. They pulled up the carpet in the dining room but not the rest
of the downstairs.

They have not touched anything on your walls - no photos, no artwork.

The downstairs is very messy. There is plaster dust and some broken glass
on the floor. I will ask them to clean that up.

They did not put equipment up last evening to begin the drying process
because the heat was not on yet. (They left about 3 or 3:30 PM). But, they
said they'd be back this morning to set that up if the heat was on. I
called at 8 AM to inform them, but they haven't called back yet. I've got
to go in a minute but I'll be back in the late morning and will contact them
again.

Well, that's the whole picture. I don't think they've done anything
upstairs which did not get wet. I will double check later this morning.

My heart is with you and your precious and vulnerable house. I am aware of
all the artwork in progress in practically every space I've seen - the
basement, the dining room, the front room, all of it. I'll do my best to
preserve it.
_______________________

Prayers are welcome.

Another Loss, Another Tragedy For Me

2007-02-11T21:02:00.000-08:00

a pipe burst in the wall
my kitchen cieling is on the floor
the fire dept pumped out 2 inches of water from the basement

i am blessed to have wonderful neighbors and friends
maybe this is a blessing in dissguise
i contacted homeowners insurance who said they may have an adjuster out tonight even -- Saturday 2/10

my plumber said he knows what to do and will come out tomorrow to make
sure there is water for heat as i have steam heating

sigh.... i was just chilling out and feeling calm after a day of work....

Sunday

O! I owe my frends so much--- Connie and Louise and Karen and Jim---- called the fire department who pumped water out of my basement. Connie has been a marvel of calm facilitation as I've been in touch with Service Master, to clean up and dry out, the plumber who has restored heat, Corning Applicance to replace a broken something on the furnace, and the insurance.

Jesse though i was being metaphoric when i told him I couldn't be there , that I was [aralyzed... i could tell so I explained how i cannot walk, cannot stand, and so cannot drive home or even, be driven home to oversee....

and this just as the possibility of assistance in rehab, making accessible has been found and this just as i felt a sense of hope and possibilitymy home my sweet home!!! i miss it so, my tools, my yard, my treees and bushes that i planted....
why am i ever exiled, made bereft?

Honeyfood, Candy, Tea

2007-01-30T18:23:00.000-08:00

i dont eat candy i dont eat candy i dont eat candy i don't like candy
i ate the candy i ate the candy i ate the candy and i love it! the
coffee candy yum that my friend sent me....

to be reduced to this, to be raised to this coffee on the tongue
with cream and butter, stuff i can't eat but might entertain
melting slowly on my tongue

i needed honey i wanted honey i asked for honey from the store lady for WEEKS.
the store that comes to this apartment building where the woman charges $1 for 3 bananas where she yes, does help the elderly disabled like me and rips us off with rapacious prices,
when, the last time i could walk, "I bought banana's for 25 cents a pound.... argHHH

Went online to my favorite place in Millerton, PA in a magic glen of a honey place and a wonderful entrepreneur made good story.... and it would cost $5 per pound with
shipping so bought instead honey from this place in Dakota--- that
was $4 per pound including shipping.... they sent it priority so it
was here the next day to have with Earl Grey tea i got on ebay that took
ONE day to get here and YUM YUM this honey is exquisite from North
dakota--- wish i could give them a super rating.
i fell less cold with honey and tea again at last--- after weeks without it...
luscious honey love for my tongue, for my tea

sometimes there can be a sweet moment.

Blue Monday

2007-01-22T17:00:00.000-08:00

Saturday's window. Today's was darker, starker, white. Todya is blue Monday, thee most dpressing day of the year according to a Brit researcher.
I was supposed to have a visitor who didn't call and didn't show. Adn i dismantled my little photo studio to accomodate
her--- it is the brightest spot and the chair had a pyramid of sheet covered boxes. Niles was dismayed as it has becaome his draped boudoir, his hidey place, from which he can see all yet not be seen. I rpobably would not have vacuumed so assidously and definitely would have eaten both sooner and later...

But the led clip light arrived. it cast a wide beam for it's tiny size, but really i still need a floor lamp to have light,

I'm thinking about a play about the place i'm living.
it's been so hard to write.
Going inside takes me inside, to the pain
should i make peace with my condition nonononononon i scream this is not me
but it hasn't gone away yet. i don't spend the day trembling in fear like i did until november, fear of falling out, falling over the incredible daily fear that exhausted me after riding the liftline

and i still fell grief and fatigue most days
maybe because i am out of noni juice and ginseng
i miss my energy which some said was incredible and maybe now i am just knocked down to normal

i seldom did as much as i wanted to , but it was so much more than i can accomplish now

ginseng ginger help me

all i need is 10% i read just 10% will let me walk again

i feel tingling like when your feeet fall asleep i pray this is an awakening

Movie Day

2007-01-18T20:04:00.000-08:00

Today was movie day.
I've only been once or twice before, in large part because
i was just hungry or exhausted after work.

The room is cold and so two people wear outer clothes, everyone has on a hat and at least two layers... there were only 4 of us ... one person per row.... each row is a set of couches
It costs 50 cents for popcorn served to each of us on a decorated paper plate with a napkin on top.

I made it a point to see Little Miss Sunshine, which i heard had been a hit at Sundance last year.

, and one old lady, the one closest to the screen, left at the first barrage of profanity from Alan Arkin, annoying me as she saw fit to lean on my wheelchair as she walked past, like it was part of the furniture---- the touching of my wheelchair really bugs me---

I laughed and cried and got incredibly annoyed at a woman who sat at the back and then shouted forward questions like "who is that?"
It's the father, volunteered the hatted man in front of me.
Whose father?
The husband's father.

thing is she told me she had seeen this movie before!!!!

Then via e-mail another neighbor told me that last week this same miscreant had not allowed anybody to talk.

and still it was an enjoyable experience. I did the body and a leg of a doll to go with the freeform dress that just emerged from my hook yesterday

It is bread day so half the room has those huge tables strewn with bread. the avocadoes were too crushed to consider and the remaining star fruit looked too far gone but i found raisin bagels and raisin scones. Ahh, i hear the water boiling, I'll have tea now.

Making Real the Dream

2007-01-15T13:45:00.000-08:00

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.

Hierarchy of Needs

2007-01-14T18:10:00.000-08:00

To Walk
if i can walk again I can, to paraphrase James Brown Get it myself

I circle round and round what each day must do. I haven't quite found balance as my list lengthens and yes, things get done, I am exhilarated and chastened by my efforts to make something out of yarn--- lees for art, but more for saleable expression. Yet each day of this wonderfully balmy winter, the day rockets by. I started to write flies and then jets, but I am awake til 3 or 4 or last night 5 and i awoke at 9 and as the dressing,cleaning ablution set piece takes two hours more or less--- okay
i comfort myself by saying as an ambulatory person i would have spent this time cooking but still.... i don't have enough day.

How do i help myself walk?
I need help.
So I pray and pray and pray.
I've added exercise.
I need therapy.
This requires money.

A number of people have understood this need for money and responded. But even as I want money,I try to think of it in terms of what I need: I've got sufficient clothing, because I go nowhere.

I need shelter
Money for shelter
Need to have my house made accessible, visitable and most of all inhabitable. I think this will cost
$20 to $30,000 dollars. Again. if someone could do this for me, then the money to do this rehab would not be needed.

Food
It saddens me that unwell, I eat less well than when i was well. I can't juice because I can't get my bulk veggies.

There are things I want, because I think these things will help me make money. I want some new tools-- a headlight, a floor lamp, a wyr knitter, a thing that makes tubes, and more wool, cotton, yarns, color But iremind myself, crying that this yearning, this wanting is a distraction. It makes me feel normal, like i once was, wanting these things, tools and materials, the joy I had making lists
and how i used to not sleep to work out an new idea, a new technique to make objects that used everything i knew like my stoneware covered books inscribed with my drawing of my house with my handmade paper of local plants, on which my poems were enscribed adorned with house figured flameworked glass beads. Remembering this comforts me, but it was not to be a resting place.

I had hoped to make glass covers. I want to make more But what is your need.

I need to improve my mental capacity. I need to figure out ways to make money-- to help me walk and keep me fed housed and clothed

I need to contribute to the wider world as i used to. Teaching the short story writing in tiny Corning was so painful and so wonderful, that children got to meet a me and I got to meet them. How i really felt i empowered and excited young people with papermaking and adults and children with my poetry workshops...
I need to make a giving appointment so the time doesn't fly by without some service beyond myself.
I hate that i am my own baby, requiring so many hours of my attention, I don't enjoy being so self involved, yet on the other hand, I feel that I am not focusing on the right thing

Helping Not Helping

2006-12-29T21:52:00.000-08:00

It's taking me two days to eat the pomegranate I retreived from the trash mash of failed vegetables. It was among the dark bruised avocadoes. I found a mango, too. A small triumph of retrieval and I had hopes for the firmness i felt among the soft alligator pears.

The bread this week disappointed. This excess spread over three six-foot tables, loaf upon sorry loaf of stuff I never ate and would not now eat.

Not eating what i never ate has served me well, so I starved genteely in the nursing home after feasting at the hospital where they made gourmet vegetarian options.

Each week some intrepid citizens get or others bring-- I've seen a large black man haul in the bread--- an array of discards.
One morning this included fruit tarts, cheesecakes, cakes as welll as the standard breads. And these not day old, but day of.... a marvel that often includes the multigrain artisanal loaves, my favorite being mutligrain with currants and sourdough pecan raisin.

Ahhh it would be nice to be able to get food from the supermarket. I have a lead again on someone to hire. And yes neighbors have offered, but one was unable to find raw almonds and it required five minutes of discussion to tell her what I meant and where to find them and still she returned with a tiny bag of slivered almonds for baking. I won't bother relate other failures to get single items, because I am grateful that should my need be dire I can make a request.... but old habits die hard and I so miss being resourced and rescourcefull

Anyway scrounging among the trash sometime yileds somthing and the avocadoes were mostly a waste but five spoonfuls from them was wonderful. And in addition to the alien and delicious pomegranate was a mango.

This saves me at least a meal of two extending the time between chinese food orders. And with a Christmas invitation to a mea, it has been a week and half since my last order. So when the Chinese food man came he questioned me a bit more closely as is to discern why I was three days late on my weekly call. We chatted about the two new years and he played with Obi who let him manipulate his body into silly anthropomorhic poses.

But I'm skipping the earlier part of the day. The crochet part has now spun off to a crochet blog. My tall nieghbor was talking to a short man who she kept insisting had a communication problem. His English was fluent and articulate so I didn't know what she meant. His hearing loss left him unable to hear the higher frequencies-- mainly women's voices. This makesme laugh. He is humorous and warm.

Turns out surgery has left him disabled and out of work and his hearing loss and lack of both money and equipment compunds the problem. All these troubles and challenges since coming from Cuba. Anyway I am moved to try to assist--- seems he's fixed several computers for folks but does not have one that works and has no internet connection to boot. I call the Center for Disability Rights--- why:? given thei utter lack of doing a single useful thing for me-- I don't know. Maybe because I believe his probelm is solvable. but no. They won't help me help him. He needs to call. I could have spit I would have or kicked or punched, because I see see seee the obverse of what happens to me.
their smug insistence in not helping and the way they find to not do anything. I'm trying to help the man get the MEANS
to help hinself. An Amplified telephone a TTY. Have him call theyy say make an appointment.

I remember frantically seeking a way to get connected and help to get connected to the net. And I remember frantically searching for the apartment and calling and calling and these organizations set up to help who? did nothing for me except make ecxcuses. And these are the same folks I called to find help shopping, to find help getting an automatic door put on a building that is HUD and asupposed to be wheelchair accessible and the hlep was never forthcoming, only the wasted time.

But I had to ask. and I did, for him. The Center for Indepent Living, as for me in the past, was ever so much more pleasant and kind. They suggested he stop by. I wrote down the information and left him a note under his door.

He was out conducting his own physical therapy, walking with a walker in need of repair. I hope I can hlep myself and then maybe find a way to help Mr. J.

New Star For Friends

2006-12-22T15:46:00.000-08:00

I woke grateful to awake, grateful to still feel grateful for the moment of peace. And had an insight into the star, an idea for another approach, because a member of FFCrochet (the freeform group) had a problem with with the adjustable ring. So
before I arose, I made two lareger stars using another method, felted them and then while on Liftline, pencil and finger shaped their hangers.

Here they are:

Felted Star Ornament 2

Ch 4 , 9 dc in 4th ch from hook,join, ch1: 10 dc
2sc, sc, around, join, ch1:15 sc
sc,dc,trc,picot:(ch2, sc), trc, dc,sc, skip two sc, repeat: 5 points
sl st to first sc, fasten off.
Using contrasting yarn, pull through center hole sl st, ch1, sl st:
You could just sl st, but adding a ch1between sl st seemed to improve the pattern

(3.5” prefelted using Grand Patons merino wool)

It was sheer pleasure to lunch with my former colleagues and what treats: dim sum of bean cake, vegetable bun, scallion pancakes, unagi sushi( my favorite and boy was it buttery sublime with my mash of wasabi and soy swirled together in the lovely porcelain demibowl. And the sublime dipping sauce. The only sour note was the horrible tasting water, but i was too busy blabbing to remember to ask for tea or something bottled.... and too soon it was time for me to go. In my nervousness I thought that 90 minutes was plenty of time... I should have made it longer, but i did not wnat to sitting there alone waiting. part of it was that everyone arrived late... oh well, rain and the weird liftline bus driver who required 4 parking spaces to pick me up because she deemed two not enough and that would be paralell parking, despite that inanity, i was grateful to get out and actually have a conversation about something other than someone's loss, or mindless chitchat.... OTOH, there was a handsome young man driver who treated me so gently and shared his concern about getting to apply his schoolwork to the work world and I told him about myself and my father--- did we ever get to apply what we learned?

Nope not to work, but to ourselves, to our friends and loved ones, in service to our community only a lucky few get to do what they are trained to do--- truly... I was reviled when I tried to apply any of my newly minted MBA skills at the ad agency in the 70s... maybe they are smarter now, but I told him that work was hell but he seemed old enough to know the truth and he was to get his degree anyway and perhaps design a way for us to be free... howw I knew my faher's job was far far less than his intellect ranged until the end of his career when he traveled around the country advising on computerization and mechanization

Thank you dears for calling me out to play.... makes me remember the girls who cme to get me when I first moved to queens and would have just stayed inside and read, Lord bless them for coming to get me, in that way that kids know there is a kid in need, not the mean kid paradigm, but the other where somehow, the group of souls connect and bond and Leslie Walker, Sharon Brown, and Cynthia Atkinson came and got me and rescued me and helped me grow. Thank you dear ones.

Like meeting Marilyn Beverly as a prefreshman at Williams College that was some magic i grokked her we were both music majors she a violinist-- that was my first instrument and I was a cellist , basoonist and singer and here we were two young black women going offf to this formerly all male cold hostile New England Berkshire barren psycholgical gulag,leaving the Emerald City behind--- what were we thinking? We should've gone off to the Sorbonne or Oxford-- we would've been treated better and come back with exotic connections and had a hell of a lot more fun. oh well....and going to discos in Manhattan wearing those six inch platforms I bought on 8th street and loved so much-- trying to walk with them up that steep Harlem hill on/by Edgecombe Avenue.

My my my . Rescue me rescue me.... Andrea rescued me this year and all praises as did Karen and Jim and Jacqui
and all those who worked on the benefit for me thank you dears and all those poets who sent money that kept me from starving and living in the street. Thank you thank you thank you. Connie and Louise cutting my lawn o! thank you thank you I've never neede so much help ever before... how is my catalpa that i palnted? My new maple? my emotional rescue. my material rescue. Keep those cards and letters coming folks. Keep me in your prayers I want to rise up and walk again and make my way.

I no longer ask to be without pain, I would take the pain to walk again, because it hurts anyway, everyday. Be clear, i say, what do i need? To walk again and then I can get all I need, myself. sigh.

Designing, Discovering

2006-12-21T18:05:00.000-08:00

Felting did not yield quite what I wanted…
For some flowers the densification was a muddying

For the bud and sepals, a caressable object that suggests an organism was formed.

I’ve tormented myself searching for a solution to my flower scarf. I wanted it to be flowers and leaves. Then I thought of oversizing the leaves, then the ever challenging for me question of color.

Especially now when I do not have my stash, my “fiber office” as my second niece, when a baby, so aptly named the room that was the library and yes was filled with books, but whose closet and diaper station turned into yarn shelves, and floor spoke of fiber use.

I see my table top loom there on the floor by the fronT facing window. O lord let me walk again..please!

Back to today’s narrative which is about design and my limitations. I feel it like a craving like a hunger that can’t be sated until it is enumerated, articulated, clearly defined, spelled out.

My next flower pattern set was to be Akua’s Fabulous Furled and Fluffy Flowers which I so thouigth that the wool felting would improve but no… To be fulfilled in felt the design owould have to be amended as the furled petals hardened and were wayward and the fluffy petal, so dependent on stitch construction for their loft, deflated.

I saw two commercial flowers that I dug.

http://www.cardsandcraft.co.uk/embellishments/405-big-crochet-flowers.html/1418.jpg

http://www.meimeicrafts.com/images/flowers

One took more work than my nature-mimic multilayer rose and it is flat, but the spoke rays of it are energetic and while my color pallet is more winter than n summer, the stretch and size of it gave me some new thoughts about the flower scarf.

Then I found this flower and loved loved loved the spiral and was reminded that a simple embelishment of the crochet hook and yarn itself could be used to enhance the flower.
At Gourmet Crochet

This Bolivian scarf showed an oversized direction but it's not integrated....
http://thestripeysheep.co.uk/index.php?itemID=161&jump=navbar#navbar
http://www.rosylittlethings.com/scallop.html-- $68 ?!
http://www.imaybeknittingaranchhouse.com/archives/2006/10/a_free_scarf_mo.html
between this and this

I knew there was an easier way:
http://heidisknittingroom.com/BoleroCrochetMotifs.htm

this suggests joining as you go:

(http://www.oaktrees.org/blog/?page_id=119)

and that's just what I've developed for this very greengold or browngreen--everything else made it look heavy. and the makeflowers sew two together was too much sewing and I did not to be another mere.near doily flower maker. I remember thinking about interlocking rings, so that's what I've designed: interlocking flowers, one open and the sme motif with a densified center, making it slightly larger.... I wonder if I want a their flower, but it's so wonderful that as I complete a flower, it's complete!

Little Spiral Star Tree Ornament

2006-12-21T12:57:00.000-08:00

I need some gift-ettes and thought-- I've got some wool-- I can felt some stars for trees!
This whole process took about 20 minutes--- from crocheting through felting. It's adorable and
feels affectionate.

Little Star Tree Ornament

Make loop( aka magic ring), 5 sc in center, sl st to first sc,
2 sc in each sc, join to first :10 sc
Change yarn, in any sc : *sc, dc, trc, sc, skip sc* repeat: 5 points/petals. sl st to first sc, fasten off.
With contrasting thread up through center hole, sl st in spiral, grabbing vertical threads of sc.
(I'm going to use a spiral sl st in a lot of plain centers --- inspired by this at Gourmet Crochet

After crocheting, I did some tugging to pull the points...if i could, I would have steamed this flat first.
I then "finger felted" it --- ( place Little Star under hot water in sink, a dab of dish washing liquid and rubbing between palms and on scrubby. I then tugged on the points, reshaping it rinsed in cold water and pressed to damp dry.... again if i could, I would speed this drying with an iron).

I don't have any ornament hangers, but I will make one using some brass wire that it have: I'll make a spiral and then a 90 angle,poke it through a point and then make another spiral/curve at the top.
I'll put up a picture as soon as it dries a bit.

By the way-- it works unfelted, too.

Joy in the making,
Akua

Leaves

2006-12-17T20:28:00.000-08:00

For that they shelter yet fall
fall and cover
save from rain
rain they sift down
dry water
becasue they effloresce
as dying flame some
their last days
because their name is
stands for single thing
a page or many and
departure because
so much has left

i miss my catalpa. She leapt large and survived that first year's attacks to produce leaves bigger than my head.
What is she like now i send her my love and my apple tree too....

I've been designing leaves and now have some woold to evolve Aku's furled and fluuffy fflower patterns with to make the
multiflower and leaved scarf....

Gifts for the Givers

2006-12-13T18:07:00.000-08:00

Here by the Grace of God, I am. The flying fickle finger of fate pointed and I am hobbled, cracked in half, rolling rolling rolling along. I am busy busy busy making making gifts for those who kept me alive this year, whose efforts on my behalf kept me alive. and ooooo i ache so again i pray this burning twiching numness means awakening, but I don't know.

I've been making bracelets and flowers and designed an eyeglass case/ Cellphone case for the step mum who reveled that she is a gree person.

How did i miss all these calls to make things to give to the needy babies. My head is so sensitive to heat loss, I have designated one of my hats as my sleep hat. The Save the Children organization is sponsoring a charity knit/crochet project entitled Caps to the Capital. Warm caps to keep babies' heads warm and needed medical supplies and interventions can help lower the death rate among newborns. The caps will be mailed by January 2, 2007 to Save the Children. "In January, Save the Children will deliver caps, along with the notes, to the President in Washington, D.C. to demonstrate that Americans want to do more to save the lives of newborns around the world. All the caps that have been donated will then be delivered to newborns and families in countries where Save the Children works."

Now the All Crafts for Charity folks got me started and It took SEVEN phone calls before I got through to the Golisano Children's Hospital... sure reminds me of why people don't volunteer this was an incredible round of phone tag for the person to tell me to just drop by--- which i cannot do.So finally she gave me the adddress to mail things to: Neo NatalIntensive Care Unit Golisano Children's Hospital at Strong, 601 Elmwood Avenue, Box 619-334 Rochester, NY 14692 She said they need everything: botties, hats, blankets...

Looking, Learning, Designing

2006-12-08T18:19:00.000-08:00

I've been thinking about leaves and scarves and developing a (new for me ) leaf pattern.
It's a maple leaf. I've got a new flower in process, too. I'm working on a leafy, viney scarf
pattern, but I'm tugged toward freeform.

Amazing as I completed objects to be given away, I got a gift... a wonderful box of yarns, hooks, candies and needles and angels from CA in Montreal. Merci mille fois, ma chere! I've been dining on these felt creations
http://www.feltfaction.fi/ENG/hats.php?page_num=1&showimage=yes&img=74

Elina Saari is so compelling--- I want everything I see and the pictures from her workshops are
so exciting. You can tell they worked with souls alighted there, the energy leaps out of the pictures
http://www.feltfaction.fi/ENG/process.php

I've been working on a reindeer and then saw this and was annoyed at my own literality
http://www.feltfaction.fi/ENG/other.php?page_num=1&showimage=yes&img=6
http://www.feltfaction.fi/ENG/other.php?page_num=1&showimage=yes&img=19

Re/Purposing

2006-12-05T18:52:00.001-08:00

I was given a huge white Granny square and its accompanying white yarn. A neighbor's mother saw my sign asking for stuff and brought in her mother's? sister's? hooks and this one square and white yarn. She looked to young to be his mother and I was so touched when he asked if it was me who had posted the sign and introduced me and she explained how this person was no longer able to think/pay attention enough to make anything. So this repuposing is a wonderful arc of giving.

I made the square an envelope/pouch and picoted all around it.

I liked the efficiency of this pattern the best. Seamless:
http://www.bevscountrycottage.com/quick-bootie.html

I read several patterns that suggested using worsted and G hooks even this said I or J!
I think I ended up with the right size using worsted weight and an E. I did all the sc in the back loop because I think someone on the All Crafts for Charity list said that gave the bootie some elasticity.

I amended it a bit more by adding two rows of my favorites picot:( sc,ch2,sc in the same stitch)
http://www.bevscountrycottage.com/tinybooties1.html

I also thought this was a great pattern, too!
Also seamless,it just seemed to work up a bit too big for preemies....

I made a simple white hat that also has this picot edging.
So gee, a set is made!

It occurs tome that this is something that this troubled city might do more of-- maybe there's a way to organize people to make things locally--- and the Red Scarf campaign in January--- red scarves for orphans at college --across the U.S,
sounds wonderful... but it would be cool to teach some young folks to crochet and make things for themselves and make things to give to needful others, the poor preemies, the homeless---but I'm still struggling to find a niche for my work, and a way to again create a way to make money. but oh, I'm not going to let go of this glow just yet,

Meditation and Prayer

2006-11-26T10:34:00.000-08:00

Meditation helps but I can't say how. I've been praying with my crochet. I miss the fire of flameworking and the sweat of mold making in kilncasting, the things that totally absorb and let me be in the lfow. Poetry is so hard for me when life is so hard, because I just write write write about my grief and anger. And my anger is not so much about my predicament but about how people treat me: the doors that are so hard hard hard to open even with uppre body strength I never dreamed to have. Being left to bang my way in the the morning and out in the afternoon.

If I say the right prayer will it all be open sesame and click click clikc like the clicks that i felt as i could not move and tumbled to the floor, will it all click click back in operation? I've got to walk again, so I can see my father before his forgetting erases me from his memory. He was such a wonderful raconteur, the dad other kids wished they had and they were so right to desire him, because i was grateful he was and is my father. I've got to walk again so I can see my nivlings. My aunt and uncles were such a part of me showing me who to be and not to be, how I miss the beautiful young people! I dreamt of Paris and this time there was a neighborhood that tunrd into queens--- new paris with single fmaily homes and down that block was beach and the sea and again golden sand. British columbia was discussed at Thanksgiving and Vancouver with islands and city and sea and green
all put together, a paradise.

Flying Hooks, Healing Heart

2006-11-26T09:42:00.000-08:00

My crochet hooks and yarn are my glass of wine. And they are what they are and they are also stand ins for the many things I got to make so easily, now out of reach. Though today, 65 degreees in November, the apartment just aglow with painterly light, Garrison Keillor's skewed crooning like a familiar friend, like my father and family just singing around the house and not caring how good it sounds, ahhh Garrison, thanks for telling the world to sing just because it makes peace more possible....

I digress, becuase I wanted to write about creating, such as it remains for me. After a long wait, the inexpensive wire cutter arrived... a three-week wait for tools I already own, (bad E-Bay seller!) but no longer can bound up stairs to get,,, my heart calls out to my tools, stay ready for me, wait for me, I want to use you again.

I am vetting my flower pattern. I second guessed myself and realized I had it right the first time, but then created a variation on the flower: 10 petals. this crowds it a bit, but it increases the twirl.

And now I have at last 3 hats to keep my head warm and attractive and it's up to 60 something! No complaints, it's easiest to wheel through sunshine and warmth than it is snow and rain.

All praises for winter not arriving until December 22,

for light filling the shortened day. For the kindness of strangers who included me in their vegan Thanksgiving family gathering which was so so so exquisite and heartful and warm and fun and delicious and o! what joy to be able to and desirous of eating every good and dleicious thing offered!!!It's been over a deccade since I've had ice cream and the soy turtle and vanilla bean with pumpkin pie almst made me sob with gratitude. How I misss being able to cook, I was so good at
plaeasing mine and others' palates and since being stricken, I've starved for decent food, having lost over 50 pounds at last reckoning, because I refused to eat drek in the nursing home. This was food to give thanks for.

My gratitude to those who wrote me about the blue flower, after so much tapdancing on my head, I cherish every kind word and the affrimation that I can add value to the world, despite my limited circumstances. I am amamzed at how limitless I once felt "bigger than my body gives me credit for" (that yummy song by John Mayer) and I guess I still am. Thank you!

Another Blow Another Blessing

2006-11-12T15:58:00.000-08:00

So wham bam I've been fired. Though the terminlogy was "the position will be terminated, blah blah blah" I was struck as to how I've been working for a fraction of what I earned in my past incarnation as a corporate citizen, with resources a fraction of what I had as a corporate maiden, with multiples of the effort as I was always putting out fires or trying to find a match. Yeah wildly mixed metaphors as I know now the extent to which I have been used abused and then er dismissed, my decency and committtment counted on --- or worse yet not even counted on, as this outrageous turn of events occured even as the
invitations to a major event had just arrived and sat at hand.

I was advised kindly to just leave the last lap to be run by those who remain: 2 other part timers and the big guy. And there is that about me that just wanted to wash my hands of it, and my energy has been very low, I'm tired and have to continually
relinquish the thoughts of the future--- next year is today in my endeavor, but I have to curtail the mental self talk about the
stuff I need to respond to and put in palce for the future now--- ad and publication closings are now for the spring in some instances and let it go let it go let it go.

I haven't had a vacation this year, and the only days off have been our holidays-- labor day and independence day so December
I get to catch up? not. I'll have to hustle.

Toward the gentle hustle, I've created more dolls and designed a flower whos pattern i hope to sell er, that i hope someone will buy, as I researched online and couldn't see any that did quite what i wanted with the dimensional rose form.

When i came in to the building and ran into Jim delivering my mail from home, hours away, saw Dorr the flower arranger, who creates beauty in the lobby; and went to visit Donna, the older lady with a beautiful wise faced tabby girl cat who gave me gorgeous cotton yarns, a book with several ideas, big handsome buttons and who liked the flowers i had made for her, by way of thanks for her other gifts...

she offered to a solid soleplate iron, which i craved so much last year, to iron paper.

The next day I got gifts from my wonderful angel friend and dry humor woman, Andrea in Chi-town and a bag of books
I'm saving to open from writer friend Robert and I see this as the universe saying don't cry,dear, here is some beauty and love.

And so yes, yes, thank you thank you o love o love that plays wondrous jazz on the radio and there's Ornette Coleman still creaing and sonny Rollins still creating and yikes! I tol myself I would be playing my tenor with ease by 50 and can I learn to blow sitting down?

Just need to walk again.

Don't metaphor me

2006-11-04T17:50:00.000-08:00

Don’t metaphor me. My condition is not a metaphor, it is . It is dependence, denial, fatigue, extra effort, discomfort. It is insight, determination, overcoming deterrence….yeah all of that. Constraint constraint
pain

How I want to smack the able who want to compare their mental ills and woes to my Situation.. look if I’m depressed up up the proverbial creek without a paddle
If you’re depressed you can at least wlak it off, or get yourself to a phramacy

The day they take their minds in hand, they can jump up off their butts and do whatever they want. I cannopt jump up, I can not run away, /I can’t even rest in this purgatory of perpetual tween ness…. There is no down other than prone. I’mm sitting up until I lie down and the only place I have to be other than my chair is my bed.

I heard a story on NPR about a young man who can’t walk or see…. He said he would prefer to be able to walk to being able to see. He didn’t want to be dependent.

I don’t want to choose or swap, but it underscored for me how dire my situation is and how little people get it…

Okay maybe not people, just a friend who knows she’s bugging me but hasn’t quite figured out how to reign herself in, contain her mess and stop spritzing me with errant psychic mouth spit.

Though I don’t want to make a target of a friend, don’t want to mimic that stupid human habit of knocking those closest, just because they are within arm’s reach.
She thinks she invokes understanding by comparing her
Inability to move on, change, get things done to my inability to move.

I had a fight last week. Some recessive chinned, slack bodied, round spectacled dufus put his clothes in the dryer where my clothes were washed. I caught him on the elevator, departing just as I arrived and yelled did you put clothes in this dryer—as I heard it whirring and saw a cart on the departing elevator.

And it became physical, I threatened to remove his clothes form the dryer and he draped himself over the dryer!!!!! And there was even a sign that says DO NOT use the room if the room is in use….

He hadn’t looked, the washing machine was full of MY black clothes… and long story short, he removed the clothes and called me a b… and I started yelling
Louder and louder, insulting him and not cursing, berating him til he fled…..

Not wise, but satisfying.

When I was a kid we used to philosophize, if we had to lose something, what would it be?

I love music and art so I couldn’t choose between sight and hearing. I never thought about mobility.

I desperately need to find a nondemeaning endeavor a resourced and supported position where the phone works, e-mail works, I can use the bathroom and get something to drink when I need it--- where is this paradise--- ahhh, right here, relatively.

I have reconnected with my fiber muse. I long for my stash of yarns--- I have at home a closet full. And I miss my looms and wools and bags of color sorted yarns, but despite this lack the hooks that I brought here have helped me.

And my small handwriitten sign requesting buttons, fabrics, an L hook and yarn has yielded all.

I made thank you gifts for my first donors. The cleaning lady, responded with yarn and yarn and lovely fabrics for which I made her a snow man. But she wanted a Snow Man and I followed the chubby doll in Creative Crocheted Dolls by Noreen Crone Findlay and he is a hit. She hugged him to her. I felt wonderful to be able to again, make something and see a bit of joy in the world.

A colleague brought me a bag of stuffing so I could stuff the big red doll ( About a foot long) which began as an amigurumi doll and her head said keep going.

Now I am wild about amigurumi, well not wild but it has lead me to make goddesses and I again long for all the things I had at hand for their adornment….

For that colleague I made a mouse, somehow that pattern came and I love how I just dug the hook in the fabric of the body and crocheted the ears in tho the body vs making ears and sewing them on.

Music heard seomthing healing in the singing of bariton Jesse __ wish I knew exactly which pieces move me—one was a poem and then to hear the story of Tscaninin whose death was called for and how he played Barber whose music I bagn to appreciate in 1997, after my mother died and I was at Chautuaqua, and now Thistle and Shamrock where Fionna Ritchie speaks form such a place of clarity and passion and culture and her narrative last week the story od Dierdre
Wjust touched me so… o not the fatedness of it but the love and the man not listening and it reminded me of Firethorn where life is full of knights and blodd and women who do not get to choose, but do anyway.

I am miss Paul Mazursky who is in town with Next Stop Greenwich Village a movie that I adore adore
And it speaks to the life I thought I would have when I came home to New York City after college, but the Village already cost waaay too much. What was still affordable were the brownstones in Brooklyn , but the
Commune of folks fell apart--- and to think we could have had those 4 incredible floors of handsome expansive house for a mere $80,000.

There are so many pasts to remember and I want more of them. The fall light took me back to my apartment on 5th avenue, that ran from fron to back of the building
So I had street and back yard and Russell the photographer reappearing….. ahhhh I want the sweetness of life again

Technology Connects, Creating Heals

2006-10-26T17:07:00.000-07:00

I saw pictures of Anthony, many pictures of this new person, so far from his parents who work here, 6 hours north of New
York City. His father showed me his beautiful big cheeked bouncing baby boy on his phone. The phone's letters were in Chinese.
Amazing, no more wallet photos, but digital, portable and always with him.
Anthony is tended by his father's mother and father. His mother is back, taking my credit card number, transcribing my order.

I weep for them and envy them. So young and with dreams and a plan and working so hard. I celebrate them. I think of how my mother told me she had to bring me to her mother, that I spent the first six weeks of my life in my grandmothers top dresser drawer on 160 West 144th street between Seventh in Lenox in Harlem USA, a few doors down and across the streeet from my grandparents' store that my grandmother ran.

I will never forget their hard work.

My unmet friend--- someone I've yet to meet and yet have spent much time and life changes with over the years--- he too has a brand new son, named Che. Che is in Tanzania while his father is in Tunisia, well London at the moment.

I exalt in the wondeful images of Tunisia, Tanzania and the beautiful brown babay boy and again--- soon lapse into
yearning to be able to move at will.

i pray to craft a way out of this inability, this frailty. I am demeened and exploited, betrayed by the very endeavor I fought so hard to sustain and maintain. I had my acute therapy occur here, so I could be near my work, work now denied me because I cannot walk. Old News, I know but I return to the red faced fury unloaded on me, the exploitative inequity and yearn to
be able to walk away. "I been 'buked and I been scorned. I been talked about, sure as you're born"

I've eased my hunger to create in the way I did last yea, and now cannot, by crocheting. I've completed a snow man for the cleaning lady who
so graciously gave me a jar of buttons, a crochet hook, two yards of fabric and yarn, He follows the snow man in Crocheted Dolls by Noreen Crone Findlay,

( a wonderful woman, because she led me and others to create dolls to raise money for victims of the Tsunami ( among the many other ways in which she gives and shares and heals). That effort demonstrated for me a way in which to give, when I thought I had nothing to give. I created in the face of destruction and yes, sold a doll, made money and was able to send money..)

I had free formed a 3 globe pile of snow kind of object for her, but then I realized she wanted this bi bellied humanoid, She digs him--- I just want to record him before I gift her.

I made a big red buxom female-- my first art doll in a long time, and I've made a small goddess figure that I wanted to
wing,but the gilded and sparked black of her body and her 4 yarns or red hair suggest gold wings vs the pastel yellow acrylic
I had thought at first to apply.

I've made several mice--- my own pattern-- and gave two of them away-- again to people who gave me materials. I've desigend a leaf bracelet, a small heart pin and acquired mother of pearl buttons to create some button necklaces.
I've begun to work on gifts for the holidays for the women who have so generously helped me this terrible. terrible year.

This has done something comforting and healing for me. This and seeing the Georgia O'Keefe exhibit in an accesssbile
and easily maneuvered space, and then writing a poem about the piece I chose-- On the Patio VIII (1950).

There is joy in the making.

Egg Foo Young

2006-10-22T15:44:00.000-07:00

It's a chinese omelette--- I tell my brother---
Remember when Mommy had an epiphany and began to make scrambled eggs with stuff in it and then began to whisk in soy sauce? smacking forehead--- must be where we got it from-- we'd been ordering it for years!

Anyway my favorite egg foo young is now shrimp egg foo young because the folks upstate don't use the any of vegetables that came in my downstate egg foo young-- snow peas, etc. but the Chinese always had fried onions and and peas in their egg foo young.... i don't like the baby corn but love the sprouts and water chestnuts...

i too say hold the gravy, as our father did--- soy sauce or hot sauce is enough for me.

When I was in the hospital one of their vegetarian offerings (the food was unbelievably good and they
called it "room service") anyway there i got into salsa with my omelettes, yum!

My 50 plus pound weight loss was doubtless aided by the dagger-in-my-gut contrast between the incredible menu at the hospital and the worst of cardboard and frozen fakery at the nursing home.....

My friend took me to task about eating-- are you getting fresh food? The only reasonalbe food option for me is Chinese food. No grocery store in this part of the world delivers. And way cheaper than the delivered meals-- I live on $30 plus tip a week of food wheareas the old person frozen meal is $8 a meal.

And yes, one or two neighbors have offered to shop for me. But each failed my test. I asked for things not critical to life and limb--- extra shopping bags, laundry detergent--- and each time it was such an enormous difficult deal, dear readers, when what you ask for does not arrive, unless, alas, you are ordering Chinese food from the menu.

So I continue to pray to find my way out of this sad sad mess. A neighbor has called me 4 times today and knocked on my door twice, but this 3 days after *not* delivering what she both offered and promised, when she said she would.

And the drag is to be ready to recieve, I have to be ready, I must be out of bed and in the wheel chair and dressed and not in the midst of any of the tasks of living that take me an inordinate amount of time to do....

Yes,, yes, people were always flakey. I have to remind myself that though all discomfort is magnifieed by the lack of my previous coping mechanisms: snatch up the task and do it myself, go for a looong walk and walk off the stress, run down to my studio and make something, ... that though it feels worse, it is not necesarily so.

I always have to translate to myself, weigh.... how much time do I have? How much energy do I have? less than before
less than before, less and yes yearning, praying, crying for more

Snips

2006-10-14T19:55:00.000-07:00

“ Stand.
In the end you’ll still be you, on that’s done all the things you set out to do”
----Sly Stone

Thank you my brother for sending this. Stand was part of the liturgy when I preached in the youth service at the Presbyterian Church. How wonderful our youth was!

“ you’re still the same person. You are still you”
----ex exec, hospital tray server and spirit tender

Why does the Medical supply company, sending me an adaptive e device pack it in an oversize box full of Styrofoam bits that require enormous work to corral, contain and dispose?

Why are the lift doors at work nearly impossible to open, causing me to almost yank myself out of my wheelchair to open?

Same for the doors at my aprtment building?
Why do people think it’s okay to touch my wheelchair?
Why have people begun to pat me on the head?
Why would I be invited to a reading where I could not be dropped off at the door to building at which I would enter?

Why do people call and expect me to answer the phone--- this might not be true even if I
Was walking it is less true not that I’m not--- if I’m not sitting right by the land line, it will take at least 30 seconds for me to reach it….

Even as Bonnie Raitt Sings I will not be Broken

2006-10-08T15:30:00.000-07:00

I've written Oprah:

Dear Oprah Winfrey Grand Dame of Dreams and President of Promising Possibilities,

I want to walk again
On November 14, 2005 at 302 am I fell down and could not get up. After many painful tests, I was diagnosed with idiopathic transverse myelitis which means that something they can’t pinpoint has disrupted my spinal cord, nerve function and the signals from my brain don’t reach my legs.

I am single, African American and 53. I had just returned to work after having retired because my investments lost their value; the man I loved and planned to live with, left, and the small town I lived in shrank as the company closed factories and laid off workers. I lost the possible audiences for my workshops and buyers for my art and jewelry.
The three galleries I had work in, closed. My new job as director of marketing and development for a small nonprofit was just two months old when I was stricken. My prognosis is: they don’t know. I am determined to recover. Until then I need help.

I would like to make my house accessible. I reside in a concrete box in Rochester, a barely wheelchair accessible apartment nearly two hours away from my house in Corning, NY. My age makes me ineligible for the senior benefits and supports but I am no longer young and have no familial resources. I emptied my savings and cashed in investments to pay my mortgage and bills while I was in the hospital and then in the nursing home…. I thought I had planned well—I have 3 degrees and acquired some skill in creating things—my first solo show was in Chicago in 2001. I’ve won the National Endowment for the Arts and other awards for my poetry. But I’ve had a series of bad breaks. Nearly everything that could go wrong, has gone wrong. Can you help connect me with those who could retrofit my home, so I could return to it?

Thanks for listening.

Akua Lezli Hope

Mobilization 1

2006-10-02T18:02:00.000-07:00

I'm not immobile. I can't walk.
I do wheelchaior pushups
and thank myself for maintaining
an above average flexibility
making it easy fro me to touch my toes
massage my feet and manipulate my legs.
***********
I read about a quadiplegic in NYC leaving home
buying his $625,000 apartment and renovating it so he can
ride his wheelchair into the shower....

Even with more than 600 hundred grand to spend, he had trouble finding an apartment.

He works from 7:25 a.m. til midnight and has a full day attendant
who sponge bathes him each a.m.......

and guess where he's from? Rochester!
where i dwell in double exile-- not home in my houseand not home in New York City
*******************

Donald Trump wants you please respond
Black Incomes Surpass Whites in Queens
Are your emoticons boring?
Millions of people are doing this
A years worth of diapers

(email subject lines)

Held Hostage

2006-09-25T18:02:00.000-07:00

I was held hostage to incompetence -- then again aren't we all? My particular ride in terror is reported in this letter to the person in charge of LiftLine

***************************************
September 4, 2006

Dear Mr. LeChase,

I find your response woefully inadequate.

Had any other citizens been TRAPPED on a bus for TWO HOURS after an expected 7 Minute ride,
there would have been a great hue and cry
.
Why did it take over a week of repeated communication to get a letter that in essence, EXCUSES
your inadequate procedures and contains 4 one way ride tickets?

This is more than a day late and a dollar short.

I called you while on the bus and in the midst of this horror. I lost my peace of mind, and two hours
of my life not knowing what would happen next, when the expected help continued to not arrive!!!
I expected to have a prompt reply and *at least* a month's worth of tickets.

Why is there such a profound failure of empathy here? I need LiftLine because I am paralyzed -- that your system has no back up plan when it fails, when I, the CUSTOMER am in essence told to take it on the chin --- for two hours-- I find it WRONG WRONG WRONG.

The whole process is out of whack--- why did I need to bring this to your attention through follow up letter when I called you While I was trapped on the bus?!
*******************************************

yeah... the lift didn't work and they sent no mechanic for 2 hours i just rode around while the bus made deliveries.

Bus # 554 and the driver -- i won't mention herSeeing her brought all the trauma back.

Delivery

2006-08-10T17:35:00.000-07:00

The fifth time I repeated my credit card number to the Chinese food guy, I was annoyed. I rifled through the papers on my desk and considered other take out places. It took three tries for him to get the number right and he then put it in twice, getting some message.
“Another card my friend,” he said “try another card.”
“No” I said.
So he did it again, saying it out loud and on the sixth try, inverting the numbers of the expiration date. So then there was the seventh try. I was about to say never mind.
"What does -- he spelled some letters unintelligibly to me.
"I don't know," I said. "It sounds like it's something to do with you."
He calls somewhere. His wife, who makes all this smooth as ice, is not there.
I presume he calls her. I hear him shouting right in my ear in Chinese, clipped and plucked a, language of pizzicato strings.
"Okay okay" he says.
Eight try, ninth try, He spells the letters to me.
"S-e-t -G-l-o-b-e "
"Set Globe. That's definitely something to do with you."
"What is Globe? What is Globe?"
I try to think of other words, earth, round, something you have to fix, a button you have to push.
Then "AH Ah AH" whatever it is, he remembers, finally. He does it. My credit card goes through....
"I'm sorry, " he apologizes, "My wife knows how to do it and she is not here.
She had to go to the hospital."

"What?"
" O she okay" he says, "she is having a baby."

I remember how he was looking for an apartment and how months ago we had talked about my first apartment. He said he went to see it and they said they only wanted someone that was 50. I envision now how lovely it would have been for them-- all those built-ins and the huge kitchen, access to the yard and the clothesline.

When he arrives, he chides me. Where was I Saturday? He had called me, because I did not place my order on Friday or Saturday as I usually do.
"I was worried about you, my friend," he says.
I remind him hot, hot it was.
"I didn't eat everything, I ate very little," and still had most of last week's broccoli in garlic sauce, my favorite hot or cold, in the refrigerator.

I change the topic and ask him the baby's name. He says he doesn't speak English very well and maybe I can help him with a name.
“Well what is he like... “ but then i learn, he isn't here yet.
“She is in New York. She is going to the East side”
“ What you're not with her? She's in New York City? OOO!”
“Well, I had to open the restaurant” he says. This is his second child. He couldn't let the restaurant be closed.
“O the baby isn't here yet! And she is in New York City to have the baby” tears well up in my eyes.

And i am so glad that i didn't blow up or curse him out or say never mind as he fumbled through the part of he business that his wife did. Tears blurr my vision, I start mumbling blessings... I am so overwhelmed with the what's and the why's. I was glad i had said the baby should have a Chinese name not just an English name, and he says “Thank you my friend for caring.” as he backs out the door, waving at the cats.

I feel so overcome by all that i didn't and don’t understand, why i'm in a wheelchair and female and black and feeling the huge lack of what all i once was and had, and here he entrusted me with something precious, this American newer than me.

And i weep and weep when he leaves and i don't quire know why.

It's the worst egg foo young ever and the best broccoli and shrimp fried rice.
I say a prayer for him and his new baby and wife.

Quiet Magic

2006-07-23T09:45:00.000-07:00

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

Thousand cuts

2006-07-18T16:42:00.000-07:00

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

2006-07-18T16:41:00.000-07:00

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.
Yes.
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.

Not Getting It

2006-07-09T10:18:00.000-07:00

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.

Art is Medicine

2006-07-08T17:04:00.000-07:00

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

Longing

2006-06-26T15:18:00.000-07:00

Karen visited, bringing me two bouquets of roses.
The red ones had a peppery scent,
the white ones' fragrance was
nearly peony with rose water. A white wave of citrus
coiling around tea. Reminding me of the rose petal candy
I made as a preteen.
I extended the bouquets to both cats.
Obi, my pointy African cat, sniffed and sniffed.
It slowly dawned on me and shook me shook me shook me
that these were from my yard.
Now as then, my rose bushes would gift me
with blooms in time for my June first birthday.
She also brought me a big bouquet of water mint,
lemon balm and spearmint.
These were from my yard.
The lemon balm a gift from her land, the mint, my parents' mint
that I had worried over and now is rooted all over the space
that was to hold vegetables.

i relish the scented green and mourn that they have had a season to go wild in the yard,
without my yanking, my pruning care.

Saturday/Proud of Me

2006-06-17T20:05:00.000-07:00

I'm proud of me. I am washing my clothes and saving $40 so that i can buy some art materials.
$40 being the 2 hour minimum that I had to pay for the home health care aide.

I am exhausted.

a 90 degree day but here it feels just like the high 70s because there is a great breeze flowing in and around the apartment--- in the bathrrom window and the the bedroom window and the living room window... too bad i can't reach the kitchen window, it would be fab...

I went to the building's rummage sale and bought spoons to make again my mixed media dolls, found a lovely ceramic-framed mirror and a hand-held mirror, a pair of purple pants, a sheer, flocked top, all this for $3.50!

i made two trips to garbage, grateful that after months i found a way to get rid of it myself, though i don't have the advantage of the ambulatory, to use the grabage chute on each floor, i must roll and elevate down to the lobby and roll into the ever wet or obstructed garbage and recycling room, but yes! to keeping the small apartment free of all debris

couldn't reach the token slot for both of the accessible machines down on the 8th floor, the only front loaders in the building...
i even broke a token trying to push the slot in. it popped up as i was pushing and split in two. that left me trembling with fear... as i already had clothes in the machine and baking soda in and had poured the liquid detergent in the detergent slot.... but i got it in the second time

so i had to do one load at a time and remembered from lost time with the home health aides, that the dryer by these accessible washers on the 8th floor, dries slowly, poorly, though the washers are superior.

and so i lucked out.

When one wash was done, i put the other in and brought my clothes back upstairs to dry in the dryer outside the door. Proof of the 12th floor dryer's efficacy-- it dried one big load -- my 5 pairs of black pants and mainly black tops and the things i bought at the rummage sale-- a sheer top and a pair of purple pants-- and partly dried the subsequent load of towels and bedding....

and wow I'm almost done! almost like a good old Saturday, sleep late, clean and destress.

Friday Blood

2006-06-17T20:03:00.000-07:00

I had called the clinic 3 days in a row as it had been weeks since my last blood draw.
And after the last draw, when my IR levels were low , the nurse had said the doctor wanted to re check me the following week--- that was nearly 3 weeks ago.

For the 3 days i didn't get the nurse, i had left messages. One of these days i got a another nurse who said she didn't know how to transfer my voice message and that i should call back again the following day argh!

anyway the nurse for my doctor and suite said well they had tried to do a blood draw but i wasn't there.

When did they come?
did they tell me they were coming?
did you tell me they were coming?
Can i know when they are coming?

The answer was no they could come any time.....

does this sound at all familiar? Just like the stupid apothecary-- i'm supposed to be available whenever they come.

then the nurse berated me about my cell phone number and how i should change it ( because of my out of area area code) She launched into a lecture, which i totally tuned out. Unless she gave me the phone and paid the bill this was just totally out of bounds. This after
saying she found it hard to get in touch with me. I said not if you use my cell phone number as the cell is always with me , but i am not always by the phone.

Anyway we went round and round. they could not tell me when they were coming, they would not call my cell etc. etc. I had missed them when they came on Wednesday, not that i knew they were
coming when they came, t i was in bed cathetering myself when the bell rang and rang. I got up quicker than i ever had but by the time i got to the buzzer, the person was gone.....

She said they had called ahead, I said no they hadn't. and if they had I would have been ready to answer the door.....( and if they had called ahead and gotten no answer, why would they be there ringing the door)

Anyway she went on and on about what is wrong with your door bell...she said this accusingly 3 times.I didn't answer her at all. In fact i zoned out and feel more about it , recounting the insult
than I did in the moment, because ultimately i still need her to work for me, insulting, abrasive idiot that she is.

Anyway in a fit of pique she said here's their number call them yourself!

I did and spoke to a calm nice woman named Dana. I told her my constraints-- I'm paralyzed and in a wheelchair, i try to work a bit each day, etc... Dana resolved it happily in about 3 minutes!
They would do the blood draw in the a.m. at work.

The blood draw woman called me at 10:30!!! to tell me she would be there at around noon! the exclamation points are because wow! someone called me to tell me when they were coming, ( of course this had not happened before at home... ) and so much for getting there in the a.m.

The blood draw lady, One Shot Shirley said i made her day. She made mine...it was a good stick, it was a butterfly and it didn't hurt going in or coming out and the after pain is now gone.... yeah I've had sticks that hurt all day ....

She thanked me for being pleasant. The feeeling was mutual.....

Before me she had seen someone in a "high place" who acted low.
Anyway the nurse called and I lost the call LOL! i was keying something in and on the phone and I fumbled my cell when i went to answer it.....

Reply to Snide Letter from Horrible Highland

2006-06-17T19:59:00.000-07:00

Dear Mr. R.
Thank you for your letter which does indeed clarify a number of things.

Let me also clarify several misconceptions:

1. Your policy of lack of reattempt was not shared with me before this situation of intransigence(!!!)
2. I did not wait til Friday to ask about/for my meds!! Friday was after the
Wednesday call to find out why they weren't delivered Monday Tuesday or Wednesday!

3. I am paralyzed and in pain. I cannot come in and have no one to pick up the drugs for me, so it is grating to read:
"We have always toid people who need deliveries right away and have missed the delivery for that day are more than welcomed (sic) to come in or have someone pick them up"

4. "Please do not be so condescending to my staff, they are here to help you"
I wish they had, as I said I am paralyzed and in pain and must make multiple phone calls and negotiations to get my meds. I was not told there were delays in fulfillment! And the last time I could not get my meds I had to engage PDQ to pick them up for me.

I am grateful that at last, they are here.

Horrible Highland Apothecary

2006-06-17T19:56:00.000-07:00

Your system is hostile to those of us dependent on it for delivery
1. I am not informed when a prescription may be delivered
2. Once attempted, if delivery fails , it will not be re-attempted

In my case I was not informed delivery was attempted.
No card was left.
I was told that the driver was unable to leave notice.
This is ludicrous and crazy.
I live in an apartment building, an edifice that has surfaces on which anything might be affixed, or a note left.

3. So un-notified I could not know that delivery was attempted and request that it be re-attempted.

I called LAST WEEKEND expecting my refill on MONDAY!

Today is Friday and I am out of my drugs.

I was asked if I had someone to pick up my drugs.
I found this just short of insulting.

If I were not PARALYZED and had had someone to pick up my drugs, I would have done so, days ago.

I had to enegage PDQ last month as I was out of wafarin and faced the intansigence of your hostile system.

Will I be reimbursed? -- nope.
Will I ever get my drugs in a timely manner?
How far in advance do I have to ask in order to be able to get them?

Can you fix this?
I want to be able to have my drugs delivered without paying additional emotional and monetary fees.

Happy Birthday

2006-06-01T19:29:00.001-07:00

Gifts from the Universe:

the gebera daisy plant received back in February while at the nursing home, blossomed again today, gifting me with a deeply orange flower

the jazzblues station broke its tired streak: a happening set culminated in a tune whose opening chords were familiar, that sounds like Purple Rain I thought and sped out of the moment thinking someone had appropriated it to segue into something else. Nope. Ahhhh!!!! Etta James delivered Purple Rain and my spirit lifted, and I sang along, finding my voice again

Breathing without assistance

Moving without pain

Life's ever unfolding possibilities

With Love, Light, Healing,and Gratitude

Memorial Day

2006-05-29T22:24:00.000-07:00

Today was lovely!

Warm, low pain,
and ran into a neighbor who said he had hoped to meet "that girl who complained", who says that the front door not being automatic is a disgrace.

He has fought and complained before and will fight and complain some more before he moves out next month when his lease is up. He's lived here on and off for 7 years.

His home home is elsewhere and he has a power wheelchair though he can walk--- he has an artificial leg, he told me and has had several glaucoma-fixing surgeries as well as having battled cancer-- hence the lost leg.

He was adorned with gold but told me he had as many silver bracelets as me. silver was what he wore in summer and gold in the winter when no one could see it to snatch it off his body.

He too has called and written HUD and Told me he would share who else he has spoken to and written to so I could do more of the same,

So i am GREATly comforted and comfortable for the moment-- a rarity.
Especially as I was told that is is more or less my fault, for not being strong enough to open the door and roll myself through.
Or that id I had an electric wheelchiar it would be easy. EVeryone else has an electric wheelchair they opined.

Yet my new comrade in arms affirmed that even with the electrc it was hard, hard. Watch as the guy in the motorized chair
paused at the door... but he had a friend with him.

God told my neighbor who has the name carried by two nephews, brother and father, to circle back around. I was reading the Sunday paper that an old woman said was Monday's.
I had come downstairs to see if the garbage room was open.
It was!

Delighted that no one was at work to let me in or out, so I have a defacto holiday.....

I came back to my apartment to work and saw the time fly past 4, so I repacaked garbage to fit in my lap and rolled
back down to the lobby.

I sped to the garbage room and as I approached the door a guy stepped through it and pulled the door shut behind him
Closed for the day he chortled.

I was stunned.

Behind me, my elevator mate stood with newspapers in his hand. He was coming to use the recycling too.
Why would he do that, I asked?

Well he's a Vietnam Vet, maybe he's got a few screws loose.

I shook the agitation off, it is too precious to have the body feel neutral to waste the moment.

Curtain Falls

2006-05-20T14:00:00.000-07:00

My bathroom curtain fell down... blew off
it is merely a stamped heavy!!! sheet that i used for table covering
when selling my art at fairs

Jean had slung it over the bathroom curtain rod for me
It had started to move earlier during the stormy windy day and I used my reach to pull it1 /3 over the the curtain rod to the back...
Well at 2 :55 am i heard thunk as it slid to the ground
at an angle i can see two windows above me

So i shoo the cats, cover the chair with pad so my naked
legs and butt are not touching on the same surface that my dressed
butt is, powder the sliding board and slide in the TV -it dark on to the wheel chair

This is a small advance as i have never done transferring in dimness
though it is occasioned by not wanting to turn on the light

I grab the reacher i keep in bed with me.
It's about three feet long and sturdy
i pick the curtain sheet up off the floor

it is big and voluminous

and try to lift it up and over the curtain rod......
I can just reach the curtain rod with the reacher but there is no way to slide it over

Think think

ah the ball of string and envelope glue bottle from my friend

i pleat an end of the curtain with string and tie a double bow around it at the other end of the string i tie the envelope glue bottle.

I roll back into the bathroom whose doorway is in the bedroom hence the need for this effort.

With the reacher i lift the envelope glue bottle up and over the curtain rod.
Yay!!! i have something to pull on to pull the curtain over.

I heft the curtain into the window frame-- about 3 feet higher than my lap, to change its weight and lessen the drag

BUT it's stuck

The pleats too stiff bulky to turn over the rod.....
DRat and i had thought to not just bunch and wrap it up
to lessen having a thick wad to go over the curtain rod

Anyway as i then try to use the grabber to give the curtain a tug up or over
i dislodge one side of the rod--- it's the kind that sits on a toothed mount
one side is still in, perhaps i can reposition it

Nope, the end of my grabber is magnetized and so the relift way up in the air
to slide it into place is not quite achievable....
off to fetch my other grabber.....
I'll try but feel it's now daunting and unachievable

It's sadly not so much that i can be seen from the bathroom-- nah the bathroom window faces no one

it's that i fear being seen in bed as the windows i see are above and at an angle
where i can just see them from my bed--- as my bed is at a diagonal across the room in the corner
okay they're darkened and dark

So who can i get to help me?

My bible thumping neighbor from NYC, from Jamaica Queens no less, sweetly sweetly offered to help me anytime but i fear the consequences of having her so intimately involved and i'm not sure she could reach to reinstall the curtain rod and she looks too big to get in the bathroom and stand on the toilet seat or my stepladder

There is a woman -- We had spoken on the phone... and she's left me a couple of notes and her phone #.... she was going to come hear me read last spring and saw me in the lobby and learned i was the same person.. wild eh? anyway her notes were about playing bridge with her mother and her ....

i think i will call her but DRAT! i wanted to shower
and DRAT! i'll have to wait til the light is at a certain angle or something before i catheter myself.

ARGH! reminded of the inconvenience of this all. If my wheelchair fit in the doorway, I could still have a door between the bathroom and the bedroom and not be seen. But I must not wish for the wrong things. If I could walk, this would be nothing, the curtain could fall I would replace it, If I could walk, I would not be in any of this situation. Walk, Walk Heal , Heal. I would not need to beg strangers for assistance. I could be quiet shy and self sufficient me, again. I must walk again,
I must have verticality again.

Seat Cushion

2006-05-17T14:39:00.000-07:00

This morning at about 5 to 9 there is a knock on the door.
I am wheeling around, putting my pile together, stuffing pockets
As I did not get my reservation in time, I made sure I awoke early enough to be dressed and then call at 8 asking for 9:15
for which I had to pay $10 each way.
So not the happiest start to another labor intensive morning.

Anyway it is Audrey the cleaning lady and I freak—
it is too early
o no she says it is something else, knowing it think she is there to tell me the bus has arrived
I open the door and it’s a cushion for the electric wheelchair...

I have no time to consider it and try to get my mind off how they were supposed to deliver it at 2 p.m. and how this throws me off, and how this is before even the office is open and how they just handed something precious to me to some unauthorized stranger.

I start scribbling checks and write the wrong amounts.
As I scribble again, the buzzer sounds...it's still not 9:15 but I know I better go.
I whirl around and pull on my lovely cotton double-sided jacket from Marketplace India. I am grateful for this loveliness and handwork.

It is a comfort on the nearly cold morning, but I forget my flocked black velvet scarf and hope it is not windy...

A new to me guy, Bill, with a cigar stub in the corner of his mouth, is my driver. We talk about tobacco, did he chew? I had two colleagues who did and I remember Craig’s face ruddy with his high and his lower cheek pouched out and that palying softabll got him started. Bill doesn't smoke the cigars, just sucks on them. Interesting how some people manage their oral fix and look tough about such a tender need.

He tells me about fishing off the Florida Keys and how they've changed. He would chew tobackky while a fishing and spit into the forgiving sea. There weren’t fish to mind he laughs. The gay folks made it better and then developers are ruining it with time-shares. I thought about the other wonderful quiet place, Nantucket, Soho, places I could afford before I could afford them and when I made money finally, they were astronomical.

We miss the back, I tell him to turn left but he doesn’t respond soon enough because the front of our building is at the back.

Leaving, it's EJ who is scowling until I come near. He arrived ten minutes early and the scowl may be because today it took me the whole ten minutes to
get downstairs….but maybe not, I was in my apartment well before 2 and for once ate at a time that still might be called lunch…

I almost let myself roll unstopped down the hill of an incline at work, another of these allegedly accessible things that feel frightening and precarious in the access….

but the chair picks up speed and I hurt my hand grabbing the one unadorned wheel.

EJ picks up where we left off, after I tell him how Vern made a scene at work the day before.
That's Vern he laughs
And he recalls, to tease me, how I ascribed his line to Vern.
You've seen the rest, now you have the best and he riffed on it, mentioning again his motorcycles and I affirmed that I remembered, Mr. reservist, world traveler, 19 years here...
And then he began to tease me Vern’s Friend he said and when I reacted he was unrelenting, happy he at last had a burr to irritate me.

And good news!

I can have 4 more sessions with my physical therapist! Approved at last by Insurance, though I tried to tell her this last week.

Anyway when we last spoke and I told her about the cushion she said the one I have in my manual, the Jay Easy was about 2 grand. I looked it up $607. Still more than something I could run out and buy but little enough that it should have been a part of their huge bill to the insurance company.

About 11% of the price of the manual and only 5% of the price of the electric, undoing her point and supporting mine about why didn’t I get a cushion with the chair.

Anyway glorious Kory who is the order taker and not the dour mean deliverer called and said they found something I could use to spare going through the insurance thing and waiting any longer. Kory was away last week getting his new daughter.

I am so so happy for him, he is a man who was radiant with clarity and kindness, I remember his energy from when I was at the Highlands of Brighton and I know that getting the electric chair is much about his effort.

It has a lower profile than the one I sit on so maybe now they will be even and I won’t have to adjust all my equipment and I can transfer from manual to electric on my own..

And I will have Kristen to help me suss it out.

Unfortunately I found out I could have access to her after I made an appointment for my home health care aide tomorrow….

I am trying to be as parsimonious as I can--- keeping their visits—the home aids visits down to once every 5 days to a week so I can stop hemorrhaging money I don’t even have..

Electric Wheeelchair Arrives

2006-05-11T17:30:00.000-07:00

"16 years" he told my health aide.....

16 years experience and my electric wheel chair is delivered without a cushion, and without an extension cord.

So i can't use it , because of course the last place it would be before its requisite daily 3 hour recharge would be at my bedside, the room in which the outlets are underneath the bed.

And the cushion... so take the cushion off your manual wheel chair.... which renders the still needed manual chair useless,

So were i to even seek to plug in the electric wheelchair someplace other than by the bed , i couldn't because i could not be in the other wheelchair and then guide the electric one to an outlet....

I had it all planned. I wisely knew i would need more assistance than the delivery guy would provide and so asked for a home health care aide... this took days but i finally got the person long denied me, Priscilla for 3 to 5p.m. because the chair was to be delivered at 3:30 p.m.

I got home at 1:45 , put on water for coffee and slapped the last frosty egg foo young cake and vegetable mei fun noodles in the skillet.... at 2 05 i hopped in, well slid on, bed to catheter myself at 2:25 the door-com buzzed and i ignored it

... it was an hour early or 40 minutes early and it buzzed again and then my cell phone went off ....

so i rushed through cleaning and redressing myself, hopped on the chair and redialed the unfamiliar number on the cell phone, and spoke to Lisa my new
usual aide... what was she doing there?

only after i had not responded to the ringing did she call in to find out she wasn't supposed to be here....now to make a tedious story short, i had asked that all be confirmed on Tuesday but of course on Thursday, this was not done.....

We chat... i starve,,, then Priscilla arrives, early but only by 5 minutes and then the impatient
wheelchair guy appears...

$10,500 and he presents the chair with his muddy footprints on it--- what are those marks i ask... o i sat in it he says

$10,500 and no cushion.... for those who don't know, there is ever danger of pressure sores, so the last thing a paralyzed butt needs is to sit for hours on an hard, ungiving surface

$10,500 and no extension cord, and the cord it comes with is maybe 18"....

and you can't use your cell phone in it
and you can't be in rain or snow in it

A Quantum 600 with a sadly grey chair top because they didn't offer the reclining chair in black and taupe makes me ill...

made by Pride

The chair is like a rolling throne though, high back like you put an exec chair on top of a motor
and gave it a joystick. It is more narrow, even in its wideness around me, than my manual because wheels are on the bottom, not at the sides...
What i wish for, is to walk again, soon, to be spared the endless inanity of those who are supposed to
know and don't..

Shall i elaborate on how hard it is to not know when someone is coming or to have people arrive
early when you are paralyzed.... you can't dash out from the bathroom, you can't raus to the door, you can't throw something on if you aren't already dressed, you can't leap out of bed.... and wildly it seems to me that in this new life of limitations i must more often go to the door, answer the door, answer the faraway phone all more more more than i ever did while ambulatory.

What i wish for, is to walk again. to walk again, to tromp, to romp to stroll, to sidle to idle to wander
to jaunt to jump, tod dance, to prance, to stride, to move legs up the alley laced hills, pick plants
for paper by waysides, to feel air move around my whole body, to glide, to skip, to walk again

Open Heart

2006-05-08T15:21:00.000-07:00

I was unhappy when I saw this bus driver again. He's the first one to make me get on the lift backwards, citing some equirement that dozens of others had not ever mentioned. He's the one that, on another trip to somewhere i had not requested, would not take me where I was supposed to go until HQ said he could. This made me late for my doctor's appointment which made me nervous and concerned...

He's 38, unmarried and nearly handsome wearing polarized sunglasses that make it impossible to see his eyes. He sounds like a New York City guy, sort of and I found up he grew up on the island. He looks Latin.

I spoke to him anyway, mainly because i wanted to rid my mind of "remember boys Tonka toys are made just for you/There modern trailer trucks and modern something too/ they're all built like a tonka truck/ a truck that boys like so much/ for boys who like real lifelike toys that they can operate too/remember boys tonka toys are made just for you!

This because the driver i thought he would be, an older guy from the Bronx, had exhorted me to remember something else. He had shared going to France for his niece wedding and being from the Bronx during our first ride together. Evoking France and family made me think of my mother and Paris and how I love and miss Paris. I appreciated both and his political point of view-- his critique and apprehension of Rochester politricks.

On our last drive together we strolled down memory lane. He is 60 something 66? and so he remember Howdy Doody ( i didn't watch or like that scary puppet) and the Mickey Mouse Club but was not watching Rin Tin Tin ( and his pal Rusty) Sky King (out of the blue of the western sky comes Sky King)and Here I come to save the day, that means that Mighty Mouse is on the way! Mickey was not the only mouse.

I sang the Schaeffer song and the Rheingold Song to him as I had to the young upstate reservist who had asked me for a song...

My Bronx friend and i wound up the reminiscence with Nathan's and i thought and then he plucked from my mind ORANGE JULIUS as he lowered me in the wheelchair to the ground.

I almost cried with joy! I adored Orange Julius and my mother would cap off trips to the Village with a stop at the Orange Julius shop on 8th street off of 6th Avenue, Avenue of the Americas

This guy said there wasn't anyone from the Bronx that he knew among the drivers and how did I know-- from his accent? No, i said, he has a warm lovely gruff voice. He told me. Sunglassed driver seemed surprised.

Any way this guy remembered Annette growing bigger than her ears-- in reruns and things i couldn't imagine someone his age would remember-- GREEN STAMPS! and getting a toy with the green stamps his mother saved and suddenly he is from uptown, from Spanish Harlem, remembering the loooong walk for blocks and blocks with his mother and brother and he has intact memories from as young as 3.5 and suddenly he is less aparatchik.

And we have bonded a bit and he smiles at his long intact memories. I urge him to write them down for posterity, for the children he is yet to have.