Monday, May 19, 2008

Concerns: That No one Else Suffer

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

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 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.


Going to the doctor at long last

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

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

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.

Thursday, May 01, 2008

Worse Than EVER

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

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
I'm very depressed and tired of arguing, calling and this kind of crass moronic incompetence
and cruelty.

Home 1

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.