Pas a pas the Cameroonian guy told me in Paris in 1983. Pole pole -- not sure what language that is , to mean slowly slowly, more pat as i can no longer take step by step. Hearing L.A.'s deeper, aging FRench accented voice calling me from France on the answering machine, I ache with longing for my old globe trotting self. I so wanted to start that project in Tanzania teaching papermaking, starting a microbusiness, helping. And i sent  crochet hooks to Famn pou Famn a Haitian microenterprise that will teach women to crochet.

While I live in a despair less abject, but profound. y peace is so fragile.

Last night for some reason i looked at my thermostat and it was blnk. i frnatically and foolishly began flicking lights off and on.  I still had electricity. How long would i remain warm without heat?

I pushed buttons and then it came on but something was flashing. I couldn't read it and thought of the sheet magnifier that i had in an Atlas but where was the atlas? And hen i looked in my file of all instructions and warranties and there was no info and then i remembered that in a kitchen drawer was another such file for appliance, so i found the  book, but that didn't tell me what the microprint flashing light said and i calmed myself saying at least this is happening on Sunday and your aide will be here tomorrow and push come to shove, you won't sleep, you will dress and
wait up and be warm.

But watching the flashing i finally figured out that is said replace batteries. ARGH! too high on the wall to be in my face and micro type ? Anyway, i had no batteries, but, good steward of
self that a past me was, i had one spare set of rechargeables (note to self, buy more) eneloops
and i set about charging them and told myself to calm down.

And i had promised myself to be in bed by 3, but didn't make it until 6 a.m.  but so it goes.

I was overjoyed to share info for one of my aide's other clients, an old guy looking for a garbage place...becausee my new garbage guy is less than one half the price of the old nasty place, which only took recycling once monthly and cost me $25/a month. Now i have
a friendly weekly recycling pick up.

And in other meek-inheriting-the-earth/i'm-mad-as-hell-and-not-going-to-take-it-anymore  updates,  I am free of the nasty nurse and the firm recategorized me which has me paying less than half the price for my service.

The Bed Story

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

Help

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

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

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

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