Friday, December 29, 2006

Helping Not Helping

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

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

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

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

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

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

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

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

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

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

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

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

Friday, December 22, 2006

New Star For Friends

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

Here they are:

Felted Star Ornament 2

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

(3.5” prefelted using Grand Patons merino wool)

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

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

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

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

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

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

Thursday, December 21, 2006

Designing, Discovering

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

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

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

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

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

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

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

I saw two commercial flowers that I dug.

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

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

This Bolivian scarf showed an oversized direction but it's not integrated.... $68 ?!
between this and this

I knew there was an easier way:

this suggests joining as you go:


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

Little Spiral Star Tree Ornament

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

Little Star Tree Ornament

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

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

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

By the way-- it works unfelted, too.

Joy in the making,

Sunday, December 17, 2006


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

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

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

Wednesday, December 13, 2006

Gifts for the Givers

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

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

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

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

Friday, December 08, 2006

Looking, Learning, Designing

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

Amazing as I completed objects to be given away, I got a gift... a wonderful box of yarns, hooks, candies and needles and angels from CA in Montreal. Merci mille fois, ma chere! I've been dining on these felt creations

Elina Saari is so compelling--- I want everything I see and the pictures from her workshops are
so exciting. You can tell they worked with souls alighted there, the energy leaps out of the pictures

I've been working on a reindeer and then saw this and was annoyed at my own literality

Tuesday, December 05, 2006


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

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

I liked the efficiency of this pattern the best. Seamless:

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

I amended it a bit more by adding two rows of my favorites picot:( sc,ch2,sc in the same stitch)

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

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

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

Sunday, November 26, 2006

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!

Sunday, November 12, 2006

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.

Saturday, November 04, 2006

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

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

Thursday, October 26, 2006

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.

Sunday, October 22, 2006

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

Saturday, October 14, 2006


“ 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….

Sunday, October 08, 2006

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

Monday, October 02, 2006

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)

Monday, September 25, 2006

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.

Thursday, August 10, 2006


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."

" 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.

Sunday, July 23, 2006

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

Tuesday, July 18, 2006

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.
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.

Sunday, July 09, 2006

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.

Saturday, July 08, 2006

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

Monday, June 26, 2006


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, June 17, 2006

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 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.

Thursday, June 01, 2006

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

Monday, May 29, 2006

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.

Saturday, May 20, 2006

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.

Wednesday, May 17, 2006

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'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..

Thursday, May 11, 2006

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 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

Monday, May 08, 2006

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.

Friday, March 03, 2006

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 (

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.