the end

this is who i used to be, not so long ago, but so long ago

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then one night, i collapsed & i knew then everything had broken.  i couldn’t move or speak for a few hours.  i thought to take a picture of that night.  & how scared i was.  & how i knew something had dramatically changed forever.

14729_10205198524437093_5219526497946458631_nthe truth is, even though i knew i had gone severe with ME, i thought i would recover.  i thought i would walk my dog again.  i thought a lot of things.  i hadn’t expected to continue to decline.  just like i never expected to collapse severe.

i’ve only made it this far because of my doctor.  without her, i would already be gone.  no doctor here would touch me or know what to do with me or prescribe the meds i need just to be able to sleep.

i’ve been in a period of darkness & decline for over a month.  this photo below was taken just before i relapsed.  right after i had started to see real improvements.  lost… quickly… & dropped to lower baseline, where i continue to sink.  struggling to do my basic activities of daily living.  then in rest – with eyes closed or staring out the windows or at the wall.  or holding my dog as i lie there.

12390903_10207105777917238_5913468120144049748_ni had 2 days this month where i had blips of adrenaline. & i did too much & sank myself further.

12510374_10207209689634966_7282279154854751298_n-1 i think it seems fitting to end the blog here.  right after remembering cay & her suffering.  i try hard every day to wake up & face this.  & accept. & be grateful i am somehow still able to feed self.  i am on the edge of not being able to do that.  if i fall off of that edge i am in trouble as there is no caregiver.  & no funds for one.  & the truth is, where i have been this last month, is not a life worth living.  it is a living death.  where almost everything is taken from you.

there was a moment tonight when i let trixie in & it was lightly snowing.  & i softly brushed the snow through her hair as i hugged her.  & then i cried.

12647371_10207360595767525_2029669938456285880_ni did all the things i needed to do.  i let my husband go so he & i could both be free from what our marriage had become.  i gave my dog away because i could no longer care for her.  my friend who took her has been one of my angels.  i will forever be grateful to her.

just as i will forever be grateful for the beautiful friends i have made online.  & i am grateful to the few people who have remained in my life out of obligation & who have helped to provide all of the things i can’t do for myself.  it is hard for them to see what i have become.  i wish to be no burden on anyone.  i yearn to set them free.

& i am sorry to who i have hurt.  who i let into my life at a time of deep illness, thinking i could be something/someone more than i am.  that i could still be capable of things like love. never did i wish to cause pain.  i so pray that with letting go will come healing.

then the last thing i need to do is set myself free.  i pray for courage.  & some measure of dignity.

to those i love & who love me – you are forever in my heart.  always with peace. always with love.
.

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cay bahnmiller 1955-2007 by cary loren

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“Tonight I heard my friend Cay was dead. Its hard to describe how her absence will be felt. She was an artist I admired, loved and wanted to document. She drew the observer into her world and the poetic, literate dreams she wanted to construct.

Cay had a passion for the city of Detroit, and maybe it was the city that partly destroyed her. She might have been more at ease in an artist garret in Europe or South America, but Detroit fed her energy. She loved the crazy cursing parrots of Bird City, the flamboyant trans-sexuals in the trawling bars along Cass Avenue, the burning sulfur and graffiti lined walls of downriver. The broken buildings, industrial bridges and scraps of rubbish in the streets and abandoned junkyards inspired and consumed her.

Detroit was at the center of her mind, and its rusted refuse became the palette for the compacted collages and found sculpture she created. Cay was among the best artists in the Cass corridor, even as she arrived at the end of its glory days. She daily roamed the neighborhoods and streets with a sharpened eye, an ability to see inside the city’s ripped and broken insides. She painted and worked like a soldier in battle. At odds to this workshop intensity was a generous, soft and compassionate spirit. She gave her spirit completely, always supportive to those she loved. Detroit is often ignorant and apathetic to its artistic-supporters. It is a silent, stubborn and rusting Moloch, and does not mourn or return the love of its caretakers.

Her voice and postures could often be harsh, edgy, nearly impossible to deal with. But that was a sickness within Cay talking, a violence and combative nature she lived with and that finally consumed her. She tested people’s loyalty and patience. She was a fascinating, generous, brilliant, witty and energetic person. Her phone conversations and letters were fascinating and highly detailed. She could talk endlessly on art, books, nature, philosophy or illness and loved to gossip. She’d develop ideas in brilliant flashes and sabotage them. Cay seemed to exist in another time, a more meaningful and deeper reality highly connected with past and that was lived out in emotional storms and symbols.

In Cay’s heart she was a romantic poet, foot soldier and artist, fighting poverty, mediocrity and politics -out on the front-lines smashing the state. A unique revolutionary thinker with a defiant and brave morality, she fought for and sympathized with the underdog, the bums outside her door and the soldiers in Iraq. The Russian Odessa poet Akhmatova was her heroine and adopted model. She took on the poetess signature hair cut, shortly bobbed with straight short bangs, her aristocratic bearing and dark mythology. Cay’s fascination with decadence, personal history and self-criticism was mixed with inner feelings of censorship and neglect.

Cay’s death was not surprising. She spoke of death often, inventing various cancers, broken bones and rare blood diseases. Extremity and death hung around her and fed the work, it was something you got used to. These cries for help held a core of truth: that Cay was in real pain. This was pain that shared transference in her mind with the city’s own wounds. Detroit was Cay’s personal Leningrad, Fallujah and Gulag, a city that both inspired creativity and constrained it. Many of her friends could see that pain, and tried to help, but Cay needed a breakthrough to help herself.

I feel the future will be kinder to Cay, as it was to the poet Akhmatova. There was much beauty and insight she had to offer, much that was overlooked, and more we can honor and learn from her life. My sincere condolences to her friends and family. We will miss you and pray that your journey now is safer and less troubled than before. Sweet dreams Cay.”

~cary loren

flesh & bone

“…It ain’t over the day you die
We all live on in the spirit by and by…
…This life is more than flesh and bone
Find out now before you’re gone
When you go your spirit lives on
This life is more than flesh and bone…”

remembering cay bahnmiller

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My Way (1940)

One goes in straightforward ways,
One in a circle roams:
Waits for a girl of his gone days,
Or for returning home.

But I do go — and woe is there —
By a way nor straight, nor broad,
But into never and nowhere,
Like trains — off the railroad.
–Anna Akhmatova
(thanks to cary loren for including this poem in his reflections about cay)

tomorrow will be 9 years since my friend cay died.  she was 53 years old. the age i will be this year.  according to my friend beth, ” the autopsy revealed a lethal dose of a drug used to treat either schizophrenia or bipolar disorder and an excessive amount of alcohol.”

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1475952_10204902628079869_5069454046003625689_n       from an entry in my journal at the time of her death: looking through the many books she had
given me over time, a page fell open in kierkegaard’s diary in which
he (taken from notes) ’ characterized his suffering (illness or
visitation) as a disproportion between his soul & body which made it
impossible for him to be like others, “realize the universal” (human
lot). for a time he was hoping to be cured & consulted a doctor, but
when it was made clear to him that nothing could be done, he conceived
of his “visitation” as “the thorn in the flesh” that crushed his human
happiness, yes, but at the same time gave him unique spiritual tensile
strength, made him an exceptional being. through it God educated him
“privatissime” in order that he might teach others what God had taught
him.’

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i pray she has found the peace that was never possible in her lifetime.

“he keeps seeing the woman’s face
come up under the ice, but he couldn’t get to her, he couldn’t free
her. her face was forever before him.”

http://www.metrotimes.com/detroit/out-from-the-dark/Content?oid=2177312

True Crime

The Stories of Trees

Burglary. Drugs. The Newfoundlanders in Annie Proulx’s The Shipping News shake their heads in dismay. Newcomers, drawn to The Rock by an influx of offshore oil work, are committing crimes that were unheard of before. People accustomed to security have to lock their doors at night. From the way they go on, you’d think crime had been invented last Tuesday. But running through the novel is a story of incest; running through the locals’ talk, casual tales of domestic violence and abuse. Crimes that make your blood run cold are just a way of life. It’s only this new crime, this unexpected crime, that’s a problem. People who thought they were safe feel vulnerable, and they resent it. Clearly the outsiders are to blame.

“Better the devil you know than the devil you don’t.” The adage isn’t quite true. Really, you forget that the devil you know is a devil…

View original post 1,785 more words

silence

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i have been in a serious disease crash for most of the last month, made worse by catching a cold.  just in the last few days i have seen some improvement, but then major cliff falls into the abyss of nothingness/severe symptoms.  i am now at a lower baseline.  sicker than a year ago, sickest since i went severe with ME.   it is causing me to debate whether to even continue blogging.

for now i will continue to recycle old facebook posts & delay the decision for a bit.  but it is clear that my ability to think/read/write/communicate has worsened.  & engaging in those activities sends me into post exertional malaise – a worsening of my symptoms.  if i cannot figure out a way to access or safely communicate, i may have no choice but to retreat into complete silence.

today’s facebook memory:

“You have traveled too fast over false ground.
Now your soul has come to take you back.Take refuge in your senses, open up
To all the small miracles you rushed through.
Become inclined to watch the way of rain
When it falls slow and free.
Imitate the habit of twilight,
Taking time to open the well of color
That fostered the brightness of day.
Draw alongside the silence of stone
Until its calmness can claim you.”

~John O’Donohue

“…waiting until God is heard.”

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“As my prayer become more attentive and inward
I had less and less to say.
I finally became completely silent.
I started to listen
– which is even further removed from speaking.
I first thought that praying entailed speaking.
I then learnt that praying is hearing,
not merely being silent.
This is how it is.
To pray does not mean to listen to oneself speaking,
Prayer involves becoming silent,
And being silent,
And waiting until God is heard.”
–Søren Kierkegaard, quoted by Joachim Berendt in “The Third Ear,”

the unfinished painting

“And now I think the things that matter are unfinished paintings that everyone creates and no one owns. Rather we are created each time we touch the breath of being, and we are connected to everyone who ever lived each time we add a stroke. And sometimes we are briefly aware that we are living parts of the most elemental community of all, the community of life force that moves through everything.” ―Mark Nepo

The Unfinished Painting, by Mark Nepo

the distance to suffering

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They are and suffer; that is all they do;
A bandage hides the place where each is living,
His knowledge of the world restricted to
The treatment that the instruments are giving.
And lie apart like epochs from each other.
—Truth in their sense is how much they can bear;
It is not talk like ours, but groans they smother—
And are remote as plants; we stand elsewhere.
For who when healthy can become a foot?
Even a scratch we can’t recall when cured,
But are boist’rous in a moment and believe
In the common world of the uninjured, and cannot
Imagine isolation. Only happiness is shared,
And anger, and the idea of love.
—W.H. Auden

http://www.onbeing.org/blog/the-distance-to-suffering/7211