Meditation and Prayer

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

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

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

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

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

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

“ 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

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

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

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

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

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

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

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

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

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

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.