Longing

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

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

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

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

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

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

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

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

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

"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

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.

Loss, Grief Unshared, Nursing Home

I begin by evoking the communal loss of Octavia Butler. My grief is compounded by having no one in the nursing home with whom to share the sense of startled bereavment. I remember reading "BloodChild" and calling my father with whom I shared a lifelong love of SF. It was he who bought me a subscription to John W. Campbell's Analog for my 12 or 13th birthday-- maybe both committing me for life to genre. I would later return the favor, subscribing for him and then moving to Asimov's mag where yes, I met, found Octavia butler and followed her ever since ( http://explorers.whyte.com/sf/bch.htm).

From Octavia Butler, I learned the subtle lesson about pernicious hierarchy in humans, and reexamined power. She wrenched and inspired, tittilated and thrilled from Clay's Ark to Wild Seed to Dawn, all the body swapping, mutating, mind changing,wolrd leaping, consciousness twirling unfurling possibility on possibility.

To lose such a pole star and pathfinder as my own reach is shortened, hurts. And it's drag to be in a place like this when such loss occurs.