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

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

The Fault in Our Stars by John Green

"The fault, dear Brutus, is not in our stars but in ourselves..."
Julius Caesar by William Shakespeare

Hazel thinks of herself as a grenade, ready to go off at any moment, inevitably hurting those who love her.

Augustus thinks Helen is the love of his life.

The story of teenagers with terminal cancer in love sounds like a real downer, and tears will fall as you read this book, but the story is actually uplifting and strangely comforting.

I have been uninspired by the book I have been reading for some weeks. I am over half way through the 770 pages, but the characters are not nice and I am having trouble finishing it. So I opened up this Kindle book just because of the title, and found it was just what I needed--an engaging book with great characters, insight into the human condition, and an emotional connection to the story.

For awards, praise and  more here is the author's web page:
http://johngreenbooks.com/the-fault-in-our-stars/

For a good plot summery go to http://en.wikipedia.org/wiki/The_Fault_in_Our_Stars.



via: jonhselforever

Cancer took both my parents and an uncle. I was with my dad daily during his last months in the hospital. Hard as it is to lose someone to cancer when they are 52 or 57 or 78 it is even harder when a child developers cancer. Likely environmental issues took the lives of my family members--smoking, exposure to toxins or environmental pollutants.

But the teenagers in this book have rare forms of cancer that are not related to anything external or environmental or to choices they have made. Augustus appears to be in the 80% survival group, while Hazel is buying time with an experimental drug. Facing death before age 20 creates a real existential crisis. But these kids also tell it as it is; tired of the way well people treat them they tell each other the hard facts. They bandy about witticisms and are irreverent to their disease.



"The inexorable truth is this: They might be glad to have me around, but I was the alpha and the omega of my parent's suffering."

"Most parents don't really know their children."

"Nostalgia is a side effect of dying."

This may not be how teenagers you know talk. One criticism of the book is that these kids sound awfully erudite.

"People always get used to beauty, though."

Still, I love the little epigrams and thoughts that appear throughout the story. It makes one think. The dying who know their time is limited see the beauty whereas the rest of us are focused on money or our career or our problems. Is this true? For some I know it is. But I am challenged to become more aware of the beauty of life, now.

"Grief does not change you, Hazel. It reveals you."

Grief comes to all, it is a part of living. We all will face death, the loss of our beloved and the loss of our own lives.

"Really, I'd never been anything but terminal."

That could be said of us all.

This love story is coming to film this year. So it is a good time to read the book.   

My Green Heroes Quilt: Lois Gibbs

After completing my First Ladies quilt "Remember the Ladies"  I decided to make a series of  quilts on American leaders. I did complete "I Will Lift My Voice Like a Trumpet" which portrays women abolitionists and Civil Rights Workers. Life and several moves got in the way, but I finally  finished a quilt top for Ecology Heroes...Only because I found a wonderful website that offers information sheets and line drawn portraits for use in teaching, Better World Heroes (http://www.betterworld.net/heroes/ ).  I wanted to focus on American heroes, so I had to forgo using some favorite leaders, including Jacques Cousteau and Jane Goodall. I added a few that were not included on that website, such as Annie Dillard, whose Pilgrim at Tinker Creek impressed me so much when it was published.

I wanted to try a modern color scheme, and so chose green fabric and black embroidery thread.

I found a leaf print that added colors, including red, and set in a small border of red and green woven plaid. The blocks sat and languished for a year. I hope I get it quilted before another year goes by!

One of my favorite people on this quilt is Lois Gibbs, the Love Canal mom and activist.

Love Canal is not far from where I grew up in Tonawanda, NY. On Sunday afternoons we would drive to Niagara Falls and be back in time for dinner.

This part of New York is an industrial center. When we went to visit my cousins on Grand Island in the Niagara River,  we passed the Ashland Oil refinery which lined the road near the Grand Island Bridges. It smelled! In front of our house was an Ashland gas station which my grandfather had built in the late 1940s. My family sold the house and station in 1963, and several years later they were torn down and an apartment building was built on the site..

We'd go boating on the Niagara River and pass industrial sites of all kinds. The Tonawanda dumps, where my dad used to go as a kid, was full of hazardous waste. Uranium from  the Manhattan Project, the development of the atomic bomb, was dumped there! (We actually own a painting found in the Tonawanda Dump in the early 1970s.  I wonder if we should get it tested for radioactivity!)

The Linde Air Products plant was near the housing project in Sheridan Park where my mom grew up. Known as 'the Projects,' the duplexes housed the influx of workers for the war plants. My grandfather was an engineer at a Chevy plant. A 2001 report by Don Finch of F.A.C.T.S. states that  the Tonawanda problems  is not "as bad as the Love Canal findings of the 1970s" but he sees the entire Western New York area as a chemical wasteland. "If you move here you have a choice. Do you want to live on top of radioactive, toxic, or heavy metal materials?" The area's cancer cases were 10% higher than expected.
 http://factsofwny.org/fundmtls.htm; http://westvalleyfactsofwny.org/chrono.htm



Love Canal began as a scheme to connect the Niagara River with Lake Ontario. Money ran out and water filled the site. In the 1920s, the canal became a City of Niagara dump. In the 1940s, the U.S. Army used the dump, including for waste from the Manhattan Project. Hooker Electrochemical Company also used this site as a dump until 1953. Hooker sold the property to the City of Niagara for $1. In 1955 the City of Niagara built a school on the property, and a second on was built a year later.And in 1957 the Love Canal housing project was built.

In 1976 reporters found toxic chemicals in sump pumps in the area. Birth defects and health problems were reported at higher than normal levels. On August 2, 1978, Lois Gibbs founded the Love Canal Homeowners Associations. The activists fought for four years until President Carter allocated government funds to Love Canal clean up. Nearly 900 families were relocated, and reimbursed for their lost homes. Congress passed the Superfund Act because of Love Canal.

In 1981 Lois created the Center for Health, Environment, and Justice.She proved that through activism, people can change the world.

Hooker Chemical also left behind a polluted area in Montague, MI, where we lived for four years. The site was fenced off, but it had not been cleaned up  Residents there were concerned that in the future people would forget its history, and build there.

My parents both died of cancer. When mom was diagnosed in 1990, at age 57, she was asked if she had been exposed to toxins, and she thought of Love Canal and the polluted corridor of Western New York.

For more information on Lois Gibbs:
http://chej.org/about/our-story/about-lois/
http://www.fredonia.edu/convocation/gibbsbio.asp