Showing posts with label death. Show all posts
Showing posts with label death. Show all posts

Wednesday, March 10, 2021

The Hospital: Life, Death, and Dollars in a Small American Town by Brian Alexander

American healthcare was an absurdist game of Jenga. 
~From The Hospital by Brian Alexander

The Hospital: Life, Death and Dollars in a Small American Town by Brian Alexander is the portrait of a Byran, Ohio hospital between 2018 and 2020. Alexander followed management, staff, and patients, investigating the complexities of healthcare in America in one small town. The news headlines we have all seen is presented in a personalized narrative that is deeply affecting; you want to rant, or cry. Likely both.

What America did have was a jumble of ill-fitting building blocks: the doctoring industry, the hospital industry, the insurance industry, the drug industry, the device industry. ~from The Hospital by Brian Alexander

Alexander follows the Bryan hospital's struggles to keep in the black when other small hospitals were being consolidated or put out of business by larger hospitals. And he shows how medical care has become a profit-making business. 

I was surprised to learn that deductibles were not always a part of health insurance. The rationale was that people would not abuse insurance if they had to pay a portion out of pocket. Affordable insurance comes with a high deductible, and people think twice before using it. Consequently, people go without preventative care and medications and treatment for illnesses. 

It could have been my family when we had to forward paid bills to the health care provider for reimbursement--after we met the deductible. Our baby suffered from continual ear and sinus infections and we often met the deductible by the end of January, which meant a huge decrease in available income for other bills and necessities at the start of every year.

The patients in the book exemplify the danger of skipping care. Those who can't afford medications pay a higher personal and economic cost when disease or illness progresses. Some pay with their lives, some become disabled and permanently lose jobs and income, and many are hopelessly mired in debt. 

Alexander writes that America has struggled with the crisis in medical care costs for a hundred years. Citizens resisted health insurance  a hundred years ago the way they resisted the Affordable Care Act later. Health insurance was, an is, considered unAmerican and socialist by some--even those who benefit from Medicare and other governmental programs.  

"Health...is a commodity which can be purchased," Alexander quotes the president of a utility company, and major employer, in 1929. "The difficulty now is its cost is beyond the reach of a great majority of people." 

Almost a hundred years later, it remains true.

In 1963, my dad sold the business his father had built in Tonawanda, NY, and came to Detroit to look for work in the auto industry. Mom had an autoimmune disease. They needed health insurance. My folks were very lucky. They went from struggling to a nice home, two cars, health insurance to treat mom's crippling rheumatoid arthritis and, later, dad's non-Hodgkins lymphoma, plus my folks paid for my first two years of college.

Today, my son has to purchase his own health insurance. He has to invest his own money in a retirement account. Of course, he has school loans, too. 

We have gone backwards. 

Alexander touched on Michigan hospitals, like William Beaumont Hospital, the Royal Oak, Michigan based hospital where my parents and grandparents were treated. A few years back they tore down an the aging shopping center of my youth and built a new one. It did seem strange to me that a hospital was in real estate. When Covid-19 hit and Michigan went into lockdown, hospitals lost elective surgery patients. Like my husband, who was considering shoulder replacement surgery a year ago. Beaumont laid off thousands and eliminated 450 jobs. During a pandemic. 

The book brought back a lot of memories of our seven years living along the Michigan-Ohio border. I had been to the towns Brian Alexander writes about.  

After fifteen years living in Philadelphia, we moved back to Michigan so our son could grow up knowing his extended family. Neither of us had lived in a small town before. There were under 9,000 people in Hillsdale, and about 40,000 in the entire county. There was a turnover of doctors; our first family doctor, one of the few who delivered babies, left family practice, demoralized after lawsuits. We did have a small hospital at the end of our street. When our son was three, he came down with pneumonia and we were glad the hospital was so close. 

Small town life was an adjustment. We left a racially eclectic city neighborhood for a county with five African Americans; one was my ob/gyn, one his nurse wife, and one his daughter who was in my son's class in grade school. I was surprised by rural poverty. Our son told us that half his kindergarten class did not have a phone and most had no books in their homes. We took took day trips antiquing in small Ohio towns like Pioneer and I took my Bernina sewing machine for cleaning in Bryan, OH. 

I am pleased that the publisher offered me a free egalley in exchange for a fair review. I found this to be an immersive, thought-provoking book.

read an excerpt at https://us.macmillan.com/books/9781250237354

The Hospital: Life, Death, and Dollars in a Small American Town
by Brian Alexander
St. Martin's Press
Pub Date March 9, 2021 
ISBN: 9781250237354
hardcover $28.99 (USD)

from the publisher

An intimate, heart wrenching portrait of one small hospital that reveals the magnitude of America’s health care crises.

“With his signature gut-punching prose, Alexander breaks our hearts as he opens our eyes to America’s deep-rooted sickness and despair by immersing us in the lives of a small town hospital and the people it serves. “ —Beth Macy, bestselling author of Dopesick

By following the struggle for survival of one small-town hospital, and the patients who walk, or are carried, through its doors, The Hospital takes readers into the world of the American medical industry in a way no book has done before. Americans are dying sooner, and living in poorer health. Alexander argues that no plan will solve America’s health crisis until the deeper causes of that crisis are addressed.

Bryan, Ohio's hospital, is losing money, making it vulnerable to big health systems seeking domination and Phil Ennen, CEO, has been fighting to preserve its independence. Meanwhile, Bryan, a town of 8,500 people in Ohio’s northwest corner, is still trying to recover from the Great Recession. As local leaders struggle to address the town’s problems, and the hospital fights for its life amid a rapidly consolidating medical and hospital industry, a 39-year-old diabetic literally fights for his limbs, and a 55-year-old contractor lies dying in the emergency room. With these and other stories, Alexander strips away the wonkiness of policy to reveal Americans’ struggle for health against a powerful system that’s stacked against them, but yet so fragile it blows apart when the pandemic hits. Culminating with COVID-19, this book offers a blueprint for how we created the crisis we're in.


Tuesday, June 9, 2020

Night.Sleep.Death.The Stars. by Joyce Carol Oates

An 800 page book doesn't scare me. Some of my favorite books are whoppers.

The number of pages are irrelevant when one becomes immersed in detailed characters, propelled by foreshadowing through their actions and weaknesses, touched by universal truths of human nature.

Oates latest novel explores the impact of death on a family.
I was sucked into the story, eagerly looking forward to reading and learning more about these characters. To discover if I was right about what would come.

Night. Sleep. Death. The Stars. begins with the sudden death of a family patriarch. Whitey stopped to investigate what appeared, and was, a case of police profiling and brutality. He was their next victim. He did not survive.

Whitey was 67---my age. He was his wife Jessalyn's reason for existence, her lodestone; he defined her. In deep shock, she plummets into a private despair hidden behind her self-effacing thoughtfulness for others.

The children, as children do, decide what must be done, how their mother should 'be', and when her actions do not conform with expectations, they reel off into obsessions and fears and anger.

The family balance is thrown off. The children carry their individual burdens. Some believed they were 'favorite' sons or daughters, while others strove to gain their father's approval. One had given up trying.

After many months, a man enters Jessalyn's life who takes her under his care. She rejects his attentions in horror, but allows him to slowly change her, alter her, and bring her back into the land of the living.

The children are incensed, complain to each other, demand someone do something. Mom has been acting incorrectly. Mom has chosen the wrong man. Mom has a feral cat in the house.

Oh, I have seen this! The children who resent the second spouse. I myself scared off a woman who had set her sights on my newly widowed father! Yes, I did!

I was increasingly horrified as the novel got darker and darker, delving into the black hearts of these children. They are murderers and self-abusers and suicidal misfits and long-suffering, angry wives.

Each sibling must find their way out of their despair and illness. I expected Jessalyn to change into a 'modern heroine', evolving into her own woman. To leave passivity behind. She finds happiness, but not growth.

This story disturbed my sleep. It was an emotional journey.

I received a free ebook from the publisher through NetGalley. My review is fair and unbiased.

Night. Sleep. Death. The Stars.
by Joyce Carol Oates
HarperCollins Publishers/ Ecco
Publication Date June, 9 2020 
ISBN: 9780062797582
hardcover $35.00 (USD)
from the publisher: 
The bonds of family are tested in the wake of a profound tragedy, providing a look at the darker side of our society by one of our most enduringly popular and important writers.
Night Sleep Death The Stars is a gripping examination of contemporary America through the prism of a family tragedy: when a powerful parent dies, each of his adult children reacts in startling and unexpected ways, and his grieving widow in the most surprising way of all. 
Stark and penetrating, Joyce Carol Oates’s latest novel is a vivid exploration of race, psychological trauma, class warfare, grief, and eventual healing, as well as an intimate family novel in the tradition of the author’s bestselling We Were the Mulvaneys.

Sunday, August 12, 2018

The Dark Interval: Letters on Loss, Grief and Transformation by Rainer Maria Rilke


Gleaned from Rainer Maria Rilke's voluminous, never-before-translated correspondence, this book collects the poet's best writings on grief and loss in one place for the first time. The result is a profound vision of the mourning process and a meditation on death's place in our lives, as well as a compilation of sensitive and moving expressions of consolation and condolence. from the publisher

Rainer Maria Rilke wrote over 14,000 letters before his tragic death from leukemia at age fifty-one, we are informed in the Preface to The Dark Interval. This volume consists of two dozen of Rilke's condolence letters, newly translated and gathered into one volume. Also included is a letter Rilke wrote to his Polish translator in which he discusses the themes communicated in his poetry.

The letters convey Rilke's philosophy of accepting death as part of existence, embracing the pain, and ensuring that we never truly lose loved ones, they are always with us and their work becomes our work.

I was in my late 20s when I picked up Rilke's slim volume Letters to a Young Poet. I kept the book close, often rereading it, and I gave copies to friends. I added Rilke's poetry to my shelves. I will never forget sitting on the cliffs of Mt. Desert Island, under blue skies with gulls circling overhead, the rushing sea and lobster boats below, and opening for the first time Duino Elegies to read,

Who, if I cried out, would hear me among the Angelic
Orders? And even if one were to suddenly
take me to its heart, I would vanish into its
stronger existence. For beauty is nothing but
the beginning of terror, that we are still able to bear,
and we revere it so, because it calmly disdains
to destroy us.

Forty years later I still return to Rilke again and again, struggling to understand the letters and poems that have moved me so. I had no idea that The Dark Interval would offer so many answers.

I read a letter at a time, for Rilke's original ideas take concentration and thought. These are letters I will read and reread.

On the death of Countess Alexandrine Schwerin's father Rilke wrote, "...have faith in what is most horrible, instead of fighting it off--it reveals itself for those who can trust it," for "death is only a relentless way of making us familiar and even intimate with the side of our existence that is turned away from us."

To Nanny Wunderly-Volkart he wrote, "We have to get used to the fact that we rest in the pause between two of God's breaths: for that means: to be in time...The brief time of our existence is probably precisely the period when we lose all connection to him and, drifting apart from him, become enmeshed in the creation which he leaves alone."

To Countess Margot Sizzo-Noris-Crouy on the death of her mother, Rilke wrote, "...we should make it our deep and searing curiosity to explore such loss completely and to experience the particular and singular nature of this loss and its impact within our life." He again mentions death as the side of life "permanently turned away from us, and which is not its opposite but its complement to attain perfection, consummation, and the truly complete and round sphere and orb of being." Death is a friend, he consoles, the true yes-sayer. In another letter to the Countess he writes about life's horrors and the unity of bliss and horror as "two faces of the same divinity" as the meaning of his Sonnets to Orpheus.

Rilke's letter to Witold Hulewiz, who translated Rilke's writing into Polish, he addresses the central theme of "the affirmation of life-and-death," death being the "side of life turned away from us."

"Transience everywhere plunges unto a deep being," he wrote Hulewiz. The angel of the Elegies "is that being which vouches for the recognition of the invisible at a higher order of reality." 

Rilke states that his angels are not biblical but is "that creature in whom the transformation of the visible into the invisible...appears already consummated." And that is what terrifies we mortals so for we cling to the visible world.

As Letters to a Young Poet can help us learn how to live, The Dark Interval can show us how to accept the mystery of the future which we cannot see or know.

The title The Dark Interval comes from a poem in Rilke's Book of Hours which ends,

I am the rest between two notes
That harmonize only reluctantly:
For death wants to become the loudest tone--

But in the dark interval they reconcile
Tremblingly, and get along.
And the beauty of the song goes on.

I received a free ebook from the publisher through NetGalley in exchange for a fair and unbiased review.

The Dark Interval: Letters on Loss, Grief, and Transformation
by Rainer Maria Rilke
translated by Ulrich Baer
Random House Modern Library
Pub Date 14 Aug 2018 
ISBN 9780525509844
PRICE $22.00 (USD)

I have previously written about Rilke at

The Rilke of Ruth Speirs: New Poems, Duino Elegies, Sonnets to Orpheus & Others
https://theliteratequilter.blogspot.com/2015/10/the-rilke-of-ruth-speirs-new-poems.html

Roots of Understanding: Letters to a Young Poet
https://theliteratequilter.blogspot.com/2014/04/roots-of-understanding-letters-to-young.html

Review of You Must Change Your Life: the Friendship of Auguste Rodin and Ranier Maria Rilke
https://theliteratequilter.blogspot.com/2016/09/the-friendship-of-auguste-rodin-and.html

Saturday, August 19, 2017

Nancy and the Terrible, Horrible, Very Bad Year


Chris loved his sand box
On the day we moved out of our Philly home I took Chris and P.J. to a hotel while Gary supervised the movers. The next day we drove to my parent's house in Michigan, a twelve-hour drive across Pennsylvania and Ohio. The next day we left Chris with my folks and then drove to our new parsonage in Hillsdale. That night we stayed with parishioners who lived two doors down from the parsonage.

the parsonage back yard
May 22, 1989, was a beautiful day. All went pretty well until the movers brought the piano up the front sidewalk. The experienced man was instructing the young man on how to move a piano when suddenly it began to tip! Gary rushed in to support it, throwing out his back.

We drove back to my folk's house to pick up Chris, P.J., our computer, and good china. On the way back, we stopped at an ice cream stand in Jonesville. The car parking brake wasn't working well and the parking lot was on a hill. Gary and I got out to buy us drinks. The car started rolling towards the road! Gary had locked his car door, but mine was not locked and I managed to reach in and pull the parking break up to stop the car from rolling. We could have lost our son and our dog in a car crash!

Chris was excited by the new house, especially his new big bedroom filled with the toys and books he had not seen for weeks. And when he saw the huge yard he was doubly excited.

That night it rained. It was a deluge. The water was flowing under the garage door and across the floor--where Gary's entire professional library and clergy supplies were stored, waiting until he could move them into the church office! Even with his bad back, we had to move every box to safety.

The basement also flooded. All of our books and my papers and much of the household items were still in boxes there. The neighbor who had hosted us came with his wet vac and worked on the water, returning all day long, so I could care for Chris, unpack some, and so Gary could get settled in his office. It turned out that the basement had been flooding for years! The basement flooded several times a year every year we lived there.

Over the years I joked that all these near-miss catastrophes either meant God was protecting us--or was warning us to get out now!

The view from the house
All summer long Chris woke up at 5:30 am, eager to go outside and explore. He would start running and I had to run and catch him before he got to the road going into town.

Before we moved in Mom and Dad had arranged to deliver furniture that my grandparents had sold us, and they installed a swing on the pine tree. I had to push Chris in the swing for an hour every morning while P.J. snooped around, following the exotic smells of rabbit and groundhog and deer.

Hillsdale UMC 
In our meet-and-greet, we had been grilled about several concerns, including what I as a minister's wife was going to 'do'. The last one, I was told, didn't 'do' anything. The District Superintendent [D.S.] turned the discussion but he should have said, "You are hiring the pastor, not the wife." I was eager to do something. I missed teaching youth class and singing in a choir, but our son was not even two years old and being a full-time mother and wife were my first jobs.

The D.S. had suggested someone take me around to show me the area. A woman took me with her to the local farmers market outside of town. When I tried driving myself there I panicked. There were no road signs, just farm fields and dirt roads! I had driven in the inner city in bad neighborhoods, and on busy expressways, but the countryside unnerved me! It took a while before I ventured out again to find that market.

I was in culture shock. In those days Hillsdale's population was about 9,000 and the entire county was about 40,000. I went to a conference gathering and was surprised to see only one African American pastor. There were several chain stores, some mom and pop stores, but to buy Chris a winter coat I had to drive to Jackson or Adrian, or visit my folks and go to the Oakland Mall.

At a church social gathering, I put my foot in my mouth. The host worked in downtown Detroit in the new Renaissance Center. I commented on how bad Detroit looked, all the empty houses, compared to Philly. He was offended. When Gary used his UMCOR experiences in his sermons, or talked about personal experiences, he was criticized. I was corrected when I called Hillsdale a 'small town,' and told it was a 'city.'

Not a very good beginning.

We lived on a cul-de-sac on the last road at the edge of town, with no sidewalk for several blocks and so no safe way to walk into town. I felt isolated and so we broke down and bought a second car, a Lumina mini-van. It was so new people stared at its strange shape.

Gary was asked to return to New York City to train his successor and I went along on the trip. We left Chris with Gary's folks. We stayed in Greenwich Village. While Gary was at UMCOR I went shopping at Macy's, saw the Guggenheim Museum, and enjoyed my day. I ended up walking all the way to 475 Riverside Drive! I was exhausted!

My mother was thrilled to have her only grandchild a two-hour drive away. She made plans for mother-daughter shopping trips, and for Chris to stay with her on summer vacations.
Chris in the back yard
For Chris's second birthday three generations of family, Gochenour, and Bekofske, gathered. It was wonderful. Chris received his first Matchbox cars. We soon bought a sand box with a cover. I could sit on the screened porch reading while Chris created cities and played out stories.

My mom was staying with us when our neighbors told us to use their hot tub while they were away. After dinner, we went over and enjoyed a long soak. It was a turning point. We were not mother and daughter, we were equals, two women, without imposed ideals of who the other should be, without shame of our imperfect bodies. I was comforted to know we had reached a new level in our relationship.

The Importance of Appearances

I remember when your beauty was overwhelming.
I thought I could never achieve it.
In your perfection, your hair glowed
still blonde and long, pulled behind at your neck
in a ponytail that swung above me
as we ascended the steep stairway home.
And later, when I went out into the world,
I was amazed--the other mothers were so old,
hair gray and skin sallow, eyes dark-circled.
And I pitied the children, for my mother
was always the youngest, the gayest, the prettiest of all.

Years passed and when I had grown old enough
to talk of such things, you asked me
"Where you ever ashamed of me,
by my disease?"
Startled, I told you the truth as I knew it.
Where you had seen disease only,
I had seen only your beauty,
and felt blessed and proud.

Since moving to the country I was suffering from allergies. There was no air conditioning in the house. I was up all night, unable to breathe. Chris was sick, too, his nose streaming. We discovered the toilet off the master bedroom had been leaking. The entire subfloor had to be torn up, the wood rotten and black with mold.
Mom reading to Chris
Autumn came and mom was changing the curtains in her bedroom when she fell off the ladder and broke her knee. She spent months bedridden. Chris would crawl into bed with her as she read him books. Mom let him play with her costume jewelry, which he strung about his neck, or used as 'pirate treasure'.

We enrolled Chris in the day care center so he had other children in his life, and so I had mornings to myself. He loved being there.
Halloween. Chris as a TMNT at day care.
That winter Chris was constantly ill with upper respiratory congestion, sore throat, and ear infections. He was frequently on antibiotics. The doctor kept him on a low dose for the rest of the winter. We had to pay 100% of the medical expenses up front and send in the bills for reimbursement. Our yearly deductible was met by the end of January. We were very broke until that check came in from the health insurance. But, thank God we had insurance.

January came and Mom was to begin walking again. She was in debilitating pain. Months went by. The doctors gave her pain meds, but she complained this was not pain from being inactive, it was something more, a deep pain in her back.

My family managed a spring visit. We did not know it would be our last photo with the entire family.

Me, P.J., Tom, Mom and Dad, Chris
Finally, in late March, Mom convinced her doctors to order a scan.

There was cancer throughout Mom's body, in her pancreas and lungs and bones and brain. Mom had her first chemo treatment before she left the hospital.

 White Flowers

The doctor has told
that your body is a vase
full of small flowers
white, and greedy.
They multiply, like lilies,
grow stately, and bloom.

And it is our duty to kill them,
using the strongest poison bearable,
killing the flowers and the grass,
the trees and the ladybugs alike,
laying you bare and stripped
to the few essentials
 you could not live without.

What will be left are these:
A tenuous will to live for others.
The memory of trees.
The sound of a child's laugh.
A few fragile friendships.
And a great desire
to see tomorrow's evening
blush in the western sky.

The doctor asked if she had ever been exposed to toxins in the environment. She grew up in the Sheridan Park Project next to a creek contaminated by waste from a nearby factory involved with the Manhatten Project. The local Tonawanda dump was also used for the waste. Just a few miles away was Love Canal. Mom had also smoked from the time she was sixteen, only stopping when I was pregnant. I no longer allowed smoking in the house and Mom did not want her grandchild to see her smoking.

The cancer was slow growing and likely had been growing for ten years. The doctor gave her six months or less.

Prognosis

You have finally broken through to death, Mother.
It waits for you like the vast and dark night sky,
open, still, pierced with the living light
of memories reaching into its depths.
The living will always call back their dead this way:
reaching far into death's quiet places,
disturbing the peace of those whose suffering has ended,
those who labored long to achieve eternal rest.
And on this, the anniversary of your Baptism,
when you first tasted death's sweet wine,
you dress in white again, sleep in a white room
attended on by white beings softly working
and you look back to your old self,
a sinner grown attached to her way of life,
now an unwilling heir to God's grace.

It is not your place to think of us.
We must learn our way by ourselves
alone, as we always have done,
although you did not admit it,
you, who always hovered close
calling and guiding us
even when we stopped up our ears
and did not listen.

Yours is to look beyond,
to places we cannot even dream of yet,
to your final achievement of death.
Yours the labor of dying.
Ours the labor of life.
It is the hardest work ever given you
and longer than that which pushed me
into this world, and more painful.

There is no anesthesia for living;
to be alive is to be in pain
of one sort or another.
As well you know,  mother.
For in you was perfected
a physical and spiritual
epitome of pain.

Because of her psoriatic arthritis and psoriasis Mom always said she did not want to live into old age and be dependent on someone for her personal care. She said she kept smoking because she would rather die of cancer young. It always upset me when she said that.

Mom and Dad at a family Christmas gathring
But her last years had been better. Methotrexate had allowed her a normal life. She and dad were able to make trips around the state because she did not need the continual care for her skin to keep it plaque free. They had an active social life, enjoying a card group. And Mom was painting, taking private lessons with a professional artist.

Death Wish

Mother, how I dreaded hearing again
your annual announcement
voiced at some friendly moment
over coffee at a sunlit table
or while folding the laundry,
the litany of duties to fall upon me
once you had achieved your desired death.

Smoking cigarette after cigarette,
the air full of your gray curlicues,
the windows filmed yellow
you spoke, distant as Andromeda,
heaping burning ashes
into the small pan of my heart.

Mine was to be the burden of heirship,
the responsibility of the only daughter
of a woman who created a daughter
to be the sun and center of her world.
For ten years, not wanting to hear,
until I had memorized your will
more clearly than my own son's face.

"Don't bury my rings
The diamond's not worth much, but keep it.
Keep whatever depression glass you want,
but check the value if you decide to sell.
Keep my jewelry; these beads are good.
Take the oil paints and brushes.
Maybe Chris will be the artist in the family."

Year after year
calm as death
placid as a coma
you talked of not wanting to be a burden
and planned for your early death.
Your death wish was a stone in my throat always
resented, but no operation could remove it.

I went to stay with Mom for a few days. She calmly called everyone she knew, telling them she had cancer. Mom was only sad for her family. She was okay with dying. She worried that Dad would not do well. At least over the last months, Dad had learned about the bills and budget. She asked if she thought Chris would remember her, and if I remembered my Grandfather Gochenour who had died when I was three. I should have lied, but I said I did not remember him.

 Trial Run

I remember the first time I feared you'd left me forever.
I woke in the morning in my tree-guarded room
where the sun had to sneak through willow leaves
and was told daddy had taken you to the hospital.
Ignorant of birth and the small death of miscarriage
I wept privately. I did not even understand
that you would return to me.
I only knew absence where you had always been
every morning in my girlhood's long dream.
In my fear and loneliness, I ached to hold
some symbol dear, and fixated on the unattainable:
a plastic, pink, Little Bo Peep, crook in hand,
sheep-surrounded, hung high on the wall.
My ideal of womanhood.
I could not reach her, and wept bitterly,
believing myself helpless and alone.

You were returned, no longer pregnant,
another brother or sister lost.
After that, I recall the games,
forcing myself to imagine a just punishment
to childhood's anger, "What if mom and dad
were killed in a car accident..."
bringing myself to tears, the helplessness
of childhood's need to be sheltered splitting my heart.

All children must face it some day,
that walking into the world utterly alone
and untethered, free.
Without the luxury of knowing home
in a place we can always come back to.
But we never believe it will be so soon,
desperately hoping this is just
another trial run.

I would not spare you one moment's agony and doubt
if it meant keeping you by me one minute longer.
I am that selfish, mother, and do so
resent your lucky fate to be the one leaving.

I would visit Mom and keep up a cheerful demeanor and listen to her tell me what to do after she died. Then I spent nights up late writing poetry about watching a parent die.
One of Mom's paintings
Mom was fifty-seven years old and Dad fifty-eight. I was thirty-eight, my brother thirty-one, and Christwo years and eight months old. We could not believe we were going to lose her.

Chris and I had been tested for allergies. Chris had severe pollen allergies--as had my Grandfather Gochenour, and my brother also had allergies. I had multiple allergies as well. The doctor ordered a blood test for Chris that showed low antibodies, which is why he contracted so many infections. We were told Chris would grow out of it. The doctor scheduled a removal of his tonsils and adenoids and the insertion of ear plugs.
One of Mom's paintings
When She Has Died

When she has died
I will tell them
that life has its horrors
but death is gentle and kind.

When she has died
I will lecture on her art
full of winter's blast
and barren trees,
symbols we chose to ignore.

When she has died
I will speak of suffering ended,
the accumulated petty pains
which built into a Niagara
of deafening abundance
burying hope and joy.

When she has died
her life will be viewed
as a hymn to disease
with all its cynicism and boredom
and we will be sorrowful
and will forget that she ever knew joy.

After her second chemo treatment, Mom ended up in the hospital. A reoccurring infection had set in and she was dehydrated and in pain. Her nurse was a friend. Mom did not want to suffer and asked for morphine. You won't wake up if you take it, the nurse warned. Mom did not care. She had suffered enough over her lifetime.

Dad called from the hospital, clearly upset. He did not tell me Mom was dying but said Mom would not be able to talk to me. I insisted he put the phone to her ear and I told her about the doctor visit and that Chris would be alright and not to worry about him.

I made plans to drive to my folks in the next morning. Dad arranged for me to leave Chris with Jean McNab, our neighbor from Houstonia. By the time I arrived at the hospital it was too late. My grandmother and aunt, dad and brother, were in the hallway in tears. Mom had just passed. I kissed her cheek, already growing cold, and told her I loved her. Mom passed on April 4, 1990.

Gary joined us. The funeral arrangements were complicated because my folks had grave sites in Tonawanda. Mom had asked Gary to preside over her funeral services. Gary said yes. It would be the hardest thing he had ever done. He was very close to my mother, and he was not able to grieve as a family member at the services.

Mom's funeral was held in Clawson on April 5. Gary's parents came to the funeral and were to bring back Chris and P.J. to their house while we traveled to Tonawanda. During the funeral Chris was walking around, sitting under the raised casket, unaware of what was happening.

The next day we drove across Ontario to Tonawanda. At the visitation, I saw cousins and aunts and uncles and family friends I had not seen in many years. The second funeral was held on April 8. It was both a time of grieving and a time to reconnect. I called my childhood friend Nancy Ensminger. She was married with children, was still writing, and had finally bought a horse.
Dad with his sisters Alice Gochenour Ennis and Mary Gochenour Guenther
 and their mother Emma Becker Gochenour
My cousin David Ennis was living in Pittsburgh. He knew I had just moved back to Michigan to be near my mom just months before she was gone. He decided he did not want that to happen to him and he did move back near his folks.
Me with my cousins Bev and David Ennis
On April 9, Mom was buried in Elmlawn Cemetery, where many of my Gochenour and Becker relatives are.

 Given For You

The first night of the first day of funeral homes
I slept one hour and woke suddenly.
You were calling me.
I arose and going to the dresser
put on your clothes.
I could feel your arms in their embrace.
They smelled clean,
Like springtime, or rain.
I imagined your pleasure in them,
your deliberation in choosing them,
the luxury of your wearing them.
I wanted to keep them all,
a treasure beyond price.
Could I but shrink the inches
to your petite hunched frame
and, like the Barbie doll you always
wanted me to be, dress up for you,
wearing the silky blouses, the vivid
knit tops, the open-toed shoes.
 I wondered at the smallness
of a mother who had borne so much.
Now, in death, I feel you here,
watching, blessing, and so I go
through the paces again, taking what is yours,
as if it were August, school beginning
you on the bed, I trying article after article
to check fit and wear,
you planning a shopping spree.
There is no privacy in death.
I do not want known
your accumulation of finery
bought to cover a diseased body,
the extravagance of your need for beauty.
I want to embrace every article
and hide it in a daughter's love.

Life did not 'go on'. Everything had changed.

My brother was living on his own and considered if he should move back home with Dad. Dad had never believed Mom would die first. He had turned in his request for retirement, planning to be home during Mom's last months. He had no job to keep his mind off his grief. Chris acted out, sensing the anxiety and despair and disorder around him.

When Mother's Day came, every card and commercial cleaved me to the heart.  I was encouraged to go to the Mother-Daughter church banquet. The speaker talked of the importance of grandparents to children and I broke out in tears and rushed to Gary's office, crying. After many minutes a lady came to check on me, but had no idea what to do and left again.

 A Mother's Love

I had thought, once, that death
would finally free me.
No more hand- me-downs, no more
the worried call to see if I was home safe,
no more being a child.
I was wrong.
For in your dying, mother,
I am imprisoned more deeply than ever,
a chattel whose debt is beyond calculation.
I am made, finally and again,
completely thine, like the baby
you loved beyond all understanding.

Your continual habit of giving
made me want to shake free.
It is the discomfort of those loved
too dearly to bear.
It is the knowledge of never being
good enough to deserve it.
It is like being
confronted by God.

And so I discover I am not freed,
but bound more tightly in the cord
of your love.

Shortly after mom's passing, I was at Dad's house and we watched Field of Dreams. After the movie, Dad told me that I owed it to Mom to lose weight, that I had broken her heart all her life by being overweight since I was a child. He thought being fat was a moral failing, the symptom of an addictive personality. I felt blindsided, wounded, and distressed. I had gained 20 pounds with the pregnancy, lost several dress sizes in the exercise class, but since the move, I had put back on weight. The only exercise in town was Jazzercise and I couldn't follow the steps and gave up. But I knew that Mom had accepted me as I was, just as she had finally accepted her own body's imperfections.

When Dad visited us for Chris's third birthday party, Dad was withdrawn and depressed. Chris could not get his attention and grew upset and acted out, and Dad became angry. No, nothing was the same. We could not explain to a three-year-old why his beloved Pops was ignoring him.

Dad's boss at Chrysler contacted him and said that he had never submitted Dad's request to retire. Dad could return to work and regain some normalcy. But it was hard coming home to an empty house. An operation for a stomach ulcer years previous had not gone well, and he was left with an inoperable bleeding ulcer in his colon. The wrong diet would make it act up and keep him homebound. Dad didn't cook and eating out brought a weight gain.

To help him grieve, we gave Chris a book by Tomie DePaola titled Nana Upstairs, Nana Downstairs. Mom had asked for Chris to call her Nana. It is the story of a great-grandmother who becomes ill and dies. The grandson is told that a shooting star was his grandmother sending him love. When the August meteor shower came, I took Chris outside and we watched the night sky until he saw a shooting star. And he knew his grandmother loved him still.
P.J. in his last days
P.J. had been suffering from declining health. He was on Synthroid and also had adrenal issues. We had been putting off the inevitable. P.J. had become confused and blind, unable to find the door or the water bowl. One morning I woke up and he was laying on the carpet, looking up at me and wagging his tail, but unable or unwilling to rise up. I knew it was time. And so we lost our doggie, too, which was very sad for Chris.

 Aftermath

After the sickness
after the dying
after the leaving
after the hundreds of dollars spent

after battling depression
after the money problems and housing problems
after the replacement of rabbit nibbled pansies

after the meeting with families
after the care-taking and hand-patting
after the third-year birthday party
after the allergy shots and antibiotics
after the solitude of empty rooms
where somebody had reclined, dying

and after the questioning
and doubts and tears
one can merely decide
live or die
knowing which, inevitably,
would be the easier,
knowing the courage necessitated by the harder,
knowing, as in a book,
it is the mystery of the end of the story
that lures us to go on---

This year was about family. It was about change and learning to live in a changed world. It was about learning to live with a broken heart and finding some solace in memories.

It took time for Dad to overcome his depression but he and Chris became best buddies again. Tom spent most of his weekends with Dad, traveling around Michigan.

When Dad did actually retire he reconnected with Houstonia neighbors who got him into breakfast and lunch groups, and he took up golf. He would ride his bicycle around Clawson. He rescued trash to repair and repurposed items which he sold cheaply in garage sales. He found an interest in pinball machines and had several in the house, which Chris loved to play. And he repaired old boat motors.

After a few years, Dad bought a cabin 'Up North' on Lake St. Helen. Dad had wanted a cabin for a long time. Dad, Tom, and Chris, made many wonderful memories at the cabin.

Dad and Chris raking leaves in Clawson
Jitterbug Queen
"Remember Nana playing Hooked on Swing?" I asked as we watched Disney's classic cartoon Woodland Cafe. “She used to Jitterbug like that.” And, remembering, Chris danced, the way she had taught him.

Dancin' fool
   ain't she cool
      hooked on swing
          the Jitterbug Queen
              danced all day
                  danced all night
                      boys flocked 'round
                          when the sun went down
                               to dance all night
                                   till broad daylight
                                       with the Jitterbug Queen.

Twirlin' skirt
    and daddy's shirt
        scuffed saddle shoes
           dancing two by twos
               bobby socks
                   at the hops
                       hooked on swing
                          she's the Jitterbug Queen

She's got rhythm
   I ain't lyin'
      heart pulse soars
             she goes flyin'
                 stops for pop
                   then back she hops
                              she don't tire
                                she just flies higher


Ponytail swayin'
    girlfriends yeahing
       hands clapping
          feet a-tappin'
             there's music in
                her feet and soul
                    way long after
                         her joints go
                           in her mind
                              she still sees
                                  the swingin' scene
                                      of the Jitterbug Queen.
Mom as a teenager at a Project dance

Thursday, December 1, 2016

When Breath Becomes Air: Finding Purpose While Dying

Patient: one who endures hardship without complaint.
I know about cancer. My parents died of it.

Mom had psoriatic arthritis and psoriasis that had been controlled by Methotrexate, allowing her a better quality of life during her last years. But she always feared an dependent old age, unable to take care of herself.
She had been a lifelong smoker until the birth of my son when she decided to give it up. It turned out to be easier than she ever imagined.

She was fifty-seven, recovering from a broken knee, when she convinced her doctor that her excruciating back pain was not normal. A CAT scan revealed cancer spread through her body, in her lungs, pancreas, brain, and bones. She had weeks or months.

After her first chemo she came home and called all her friends and relatives, calming chatting and telling them the news. She instructed me on the value of her Depression glass collection and what jewelry was 'good'.

She wondered if I remembered my grandparents who had died before I was three, hoping that our two-and-a-half-year-old son would remember his doting grandmother. It was her only regret, for she had given up hope of ever having a grandchild and had found joy as a grandmother.

Two weeks later she was in the hospital, choosing morphine over pain, leaving behind a weeping family and devastated husband.

Fast forward sixteen years. My father had found a girlfriend and was enjoying life when his Non-Hodgkins lymphoma came out of remission. Whereas Mom accepted the news, Dad was determined to fight the cancer. I stayed at the hospital with him during the day, and my brother came after work. He held on for ten weeks before the oncologists allowed his removal to Hospice. Dad was 78. My brother and I were now all that was left.

I have uncles and a grandfather who died in their early fifties. It is hard to lose someone 'before their time'. I feel for my cousins whose dads passed when they were young adults. What is harder to accept is when death comes to people under forty, or thirty, or even as children.
*****

"I was driven less by achievement than by trying to understand, in earnest: What makes human life meaningful?"

Paul Kalanithi was driven to understand the most basic question of life: What makes life meaningful? What kind of life is worth living? Can a life cut short, on the cusp of reaching its potential, still hold meaning? He studied medicine, biology, philosophy, literature, and poetry searching for understanding. He attended Medical school to "bear witness to the twinned mysteries of death, its experiential and biological manifestations: at once deeply personal and utterly impersonal." He realized that physicians must understand their craft intellectually but also morally.

Had I been more religious in my youth, I might have become a pastor, for it was the pastoral role I'd sought.

At age 36, soon to graduate and begin his career as a neurosurgeon and planning to start a family, Paul was diagnosed with terminal cancer.

        "And with that, the future I had imagined, the one just about to be realized, the culmination of             decades of striving, evaporated."

The cancer could be managed, held off, for an uncertain length of time. As a doctor Paul understood his case, the options and the probability of their effects. He was also now a patient, needing to make sense of his options and potential, finding what would give meaning to his time left on earth.

I began to view the world through two perspectives; I was starting to see death as both doctor and patient.

His love for language, writing, literature, and deep medical and scientific knowledge allowed Paul to express and probe his experience as a dying cancer patient, leaving behind this memoir.

Paul tells us about his patients and what they taught him, and about being a patient and what he learned. We hear about the rigorous and crushing work of residency and how a slight touch with a scalpel can be irrevocable. As a cancer patient, he had to decide how to live--oriented towards life or death--and whether to have a child he won't live to see grow up.

...even if I'm dying, until I actually die, I am still living.
Paul did not live to finish his memoir. The moving epilogue is written by his wife. The Forward by Abraham Verghese warns us, "Be ready. Be seated. See what courage sounds like. See how brave it is to reveal yourself in this way. But above all, see what it is to still live, to profoundly influence the lives of others after you are gone, by your words...Listen to Paul. In the silences between his words, listen to what you have to say back. Therein lies the message."


When Breath Becomes Air
Paul Kalanithi
Random House
Published January 2016
$25 hard cover
ISBN: 9780812988406

Thursday, August 4, 2016

It's a Dark Night Inside: The Language of Dying by Sarah Pinborough

Caring for a dying parent is a universal and timeless experience. Some children hover, an administering angel, while others stay in distant denial; some vent their anger at the gods or fate that they are being left, or being left to care, while others eagerly await the freedom that parental death can sometimes bring to a child. It is a time when we face the past and the future, forgive or hold on to resentment, become the child our parent always wished for, or being cut loose can finally become ourself.
The Language of Dying is an honest and moving journey into the soul and heart of a daughter caring for her father's last days. Her dysfunctional family, which has "so much colour that the brightness is damaging", comes together briefly to the family home.

There is the older sister Penny, a 'glowing' woman who hides behind a 'Gucci persona', full of excuses why she did not take on their father's care.

Older brother Paul is a dominating and charming man addicted to excesses. and who disappears for months at a time.

The twin boys are the youngest, beset with demons. Davey, dually addicted, tenuously holding onto sanity and sobriety, and lost Simon whose self-destructive dive began when abused by a trusted older man.

And our heroine, victim of an abusive marriage, struggling to repair her life, who cares for her dying father day and night.

Their shared past is their parent's alcoholism and break-up, but our heroine alone sees the wild, red eyed creature, wonderful and waiting for her.

"Love is hard to kill," she thinks, like life, and the family bounds hold tenuously.

Pingborough's insightful writing captures the emotional life of her narrator. It is also beautiful and memorable writing.

My father died of non-Hodgkins lymphoma and spent over two months in the hospital and one day in the hospital Hospice. Every day I went to the hospital at 9 am and left when my brother arrived at 5 pm. My brother and I were with dad his last days. The language of dying, the special lingo of death, the practices of caring for the terminally ill and the strange rituals that become everyday is captured in this moving novel.

But there is another level to the story, the wild creature that comes in the night to lure our heroine to another world.
"Well, now that we have seen each other', said the Unicorn,/'If you'll believe in me, I'll believe in you.' Lewis Carroll, Through the Looking Glass, and What Alice Found There
She first saw the vision the night her mother left the family. It haunts her at pivotal moments in her life, a summons to come away. Call it fantasy, magic, or projection, in this novella the unicorn represents a place of belonging and the freedom of new life. "This creature and I belong together. I know it and so does he," she thinks. He is nothing like the archetypal unicorn, he is black not white, his horn is twisted and deformed. He brings her "joy, pure and bright" before disappearing into the night. She knows it waits for her. When will she be ready to follow?

I received a free ebook from the publisher through NetGalley in exchange for a fair and unbiased review.

The Language of Dying
Sarah Pinborough
Quercus
Publication August 2, 2016
$9.99 ebook
ISBN: 9781681444345



Sunday, May 8, 2016

Last Things: Zero K by Don DiLillio

The Market abhors a vacuum; where there is a need and money it will create a product to fill it. In Don DeLillo's new novel Zero K, with money one can buy out of the cycle of life, opting for a cryogenic stasis that is neither death nor the ego-driven awareness of life. You can buy a future in rebirth.

Ross Lockhart's wealthy father has summoned him to the death of his second wife, Artis, and to witness her transformation and installation into a womb-like pod that will hold her until, at some undefined future time, she is returned to life. Artis longs for this non-death, and Ross's father does as well. They have financially and spiritually bought into this eschatology of a secular age.

Ross arrives at the Convergence facility in a remote part of the Ukraine. The hallways are filled with nameless closed doors. Everything about the place is unnamed, unexplained, locked away. He is allowed only glimpses into what happens there. There are screens showing war and armies, death and self-immolation, supposedly in the greater world, images of 'last things', end days, death. A dark world bent on apocalypse.

The father's sunglasses brings "the night indoors;" the opening chapters are rife with the stark words of night, blind, empty, nothing, nowhere, abandoned, and especially dark which DiLillo uses eight times in two pages.

Ross's father and Artis are ardent believers in this new technology, a post-death cryogenic suspension which brings disconnection to the chaotic world and the demands of the self, exchanged for a Nirvana state of bliss until future technology reawakens the living dead, mind and body restored. A resurrection. It is a faith-based technology, promising life after death. Between death and rebirth is offered a 'virgin solitude" in an idealized, rebuilt body, waiting in a womb-like pod.

Ross has an obsession with facts, details, math, and especially naming. He learns that his father assumed the last name Lockhart. And his father did lock his heart away from his son, abandoning him and his mother when Ross was a boy. When his father admits he wants to chose to undergo the process with Artis at her death, Ross talks him out of it even while Artis whispers for Ross to 'join them.'

A Convergence worker preaches that apocalypse is "inherent" in the physical world, the world will end, that humanity's insanity of war and destruction of the earth is part of a self-willed apocalypse.

What is death, what comes after, and whether death should be a choice are considered by all the characters. In a dismal and meaningless life caught in a world of technology that brings distance, can wonder still be found?

I received a free ebook though NetGalley in exchange for a fair and unbiased review.
DeLillo infuses the drama with metaphysical riddles: What of ourselves can actually be preserved? What will resurrection pilgrims experience in their cold limbo? With immortality reserved for the elite, what will become of the rest of humanity on our pillaged, bloodied, extinction-plagued planet? In this magnificently edge and profoundly inquisitive tale, DeLillo reflects on what we remember and forget, what we treasure and destroy, and what we fail to do for each other and for life itself. Booklist
Zero K
Don DeLillo
Scribner
Publication May 3, 2016
$26 hard cover
ISBN:9781501135392

Thursday, April 7, 2016

The Poetry of Anne Sexton

The Complete Poems of Anne Sexton is now available in ebook from Open Road Integrated Media. The book includes the complete poems and posthumously published work. It is a substantial volume of work. Sexton plumbed her own life as a woman, mother, daughter, wife and lover, addressed her struggle with depression, institutionalization, and suicide attempts.

The Publisher's Note explains how the poems were adapted to the ebook form. And How It Was: Maxine Kumin on Anne Sexton,  a revealing essay about Kumin's professional and personal relationship with Sexton.  Kumin writes that an elderly priest told Sexton that "God is your typewriter"; those words kept Sexton going for another year as she wrote her last book of poetry, The Awful Rowing Toward God.

I found The Awful Rowing Toward God by Anne Sexton shortly after it's publication in paperback. I did not have much money in those days, and buying a book was a thoughtful decision. I did not know Sexton. I did not know about 'confessional' poetry or about Sexton's demons and suicide. The title caught my attention and I brought it home.

Sexton was a revelation. Her imagery was so novel and individualistic, unlike anything I had ever read before. Her voice was clear and honest. I fell in love with these poems. She impacted my own poetry more than I care to admit, but I was young and trying new things.

The volume begins with Rowing with its imagery of God as an island the poet endeavors to reach, an imperfect island but where

"there will be a door
and I will open it
and I will get rid of the rat inside of me
the gnawing pestilential rat.
God will take it with his two hands/and embrace it."

She tells us she is on a quest.

In the poem Courage she writes about what courage means in life, "it is in the small things we see it./The child's first step,/as awesome as an earthquake," to the courage of enduring despair, and the courage of old age when "at the last moment/when death opens the back door/you'll put on your carpet slippers and stride out."

At times the poems reflected me back to other poets. For instance, in The Poet of Ignorance Sexton writes,

"I try to forget it, go about my business,
cook the broccoli, open and shut books,
brush my teeth and tie my shoes."

And I recalled Emily Dickinson's poem about performing the mundane as a way of carrying on:

"I tie my hat--I crease my shawl--
Life's little duties do--precisely--
...
Therefore--we do life's labor--
Though Life's Reward--be done--
With scrupulous exactness--
To hold our senses on--"

Sexton refers to an animal, a crab clutching fast to her heart; Dickinson to a Bomb held to her bosom.

The last poems were my favorites.

Not So. Not So.,  beginning "I cannot walk an inch/without trying to walk to God" and ending "You have a thousand prayers/but God has one."

In The Rowing Endeth, the poet has arrived "at the dock of the island called God" and plays a game of poker with the deity. God wins and laughs, "the laughter rolling like a hoop out of His mouth/and into mine,/and such laughter that He doubles right over me/laughing a Rejoice-Chorus at our two triumphs." And as the whole universe laughs, she ends, "Dearest dealer/I with my royal straight flush/love you for your wild card/that untamable, eternal, gut-driven ha-ha/and lucky love."

The Christian faith is a comedy: God always wins for out of death comes the joy of resurrection. Death brought Sexton death respite from her demons. I  pray that she found peace.

I received a free ebook through NetGalley in exchange for a fair and unbiased review.

"[Her poems] will be understood in time--not as 'women's poetry' or 'confessional poetry'--but as myths that expand the human consciousness." Erica Jong

The Complete Poems of Anne Sexton
Open Road Integrated Media
Publication Date: April 5, 2016
ISBN: 9781504034364
$9.99 ebook