When She Smiles

Mom at the Matterhorn.

When she smiles,

the patch covering the hole
that cancer made where her right eye
used to be,

lifts and I can see the hole
while I am trying to eat dinner,
I am polite and swallow small bies

as I try to flow with her frenetic energy,
her passion for the next event, the next trip,
for the family photos

for the trips to Mexico for some kind of miracle
and to Chicago for chemotherapy,
and for her loved-soaked mother stories.

She has suffered for over forty-five years
with cancer, three or more primary sites,
mixed with lost love and not enough money,

and friends coming out of their walls
to help her, and she, trying to lead
the Yul Brynner Foundation

For Head And Neck Canter, --
that man who said, "When you watch this,
I'll be dead.  Whatever you do, don't smoke."

I say, when she smiles,
the patch over her cancer hole lifts
and I take small bites and listen

and can't even hear my problems--
they have crawled inside her head,
down into her heart

and moved through her body,
out her fingers and toes,
coming back to bless me.

And then she walks me to her truck,
gives me a book of love and laughter and prayers
and says, I never say goodbye, just so long."

Then she smiles so beautifully--
the patch always matched with her dress,
and me, embracing my tiny pain.

William L. Killian
Written for Janet Trever
Wednesday, September 24, 1997
Tucson, AZ

On the Road Again: U-Haul Stories

One thing about the Trever-Millers, we're kinda famous for our moves.  Not dance steps, our many moves around the country.  I like to tell people I went to 14 different schools by the time I graduated high school.  We were military brats for a time, but even after my parent's divorce, I liken my mother's notions of moving to that of Juliette Binoche's character in Chocolate.  She felt the wind blow and knew it was time to go.

In her book she dedicated a paragraph to the week-long drive from Rapid City, South Dakota to Tucson, Arizona:

We again "upped the anti" in the gutsiness department.  This time we were taking our U-Haul of possessions cross country to a place none of us had ever been.  My parents flew out to Rapid City and drove our car, Sarah and Weesnick (the one who supposedly couldn't travel in cars), while Andy and I managed the big truck.  We had to struggle mightily because the local office had given us a lemon to palm off on another state.  It broke down, didn't have the power steering and automatic shift that was promised, the emergency brake didn't work, and was basically a huge gangly truck.  I drove and handled the clutch while 10 year old Andy operated the top gear shifts that I couldn't reach, "Going for fourth." (as I put in the clutch but couldn't look at him) and he would respond "Got it," so that I knew I could let go of the clutch.  It took all four of our hands and arms to turn the steering wheel, and he was the look-out since the outside rear view mirror on my side was broken.  The last night as we were driving along the highway the desert was illuminated by yellow reflector lights ahead of us as far as the eye could see.  Both Andy and I commented that it looked like the yellow brick road that we were following to our next adventure.

Originally I wasn't going to include the U-Haul story in the blog, but I found something today that changed my mind.  A drawn caricature of my mom in a U-Haul, and an account written by SOMEONE ELSE of our move from Tucson to Fort Collins a few years later.

Moving was part of mom and who she was.  That essence of the Yellow Brick Road and that the next adventure was always on the horizon haunted and delighted her.

I have no idea who wrote this, but its a wonderful description of our life on the move, and I love the imagery of mom ferreting around in boxes and the purple eye-patch brigade that saw her off.

(excerpt from "The Move")
THE MOVE

This detailed description is not for the faint-hearted, nor for anyone contemplating a move in the near future.  Consider yourself forewarned!

Part The First----Preparation

     Jan became a box fiend, ferreting out every nook and cranny for a month before the actual event.  The professional movers' estimate of $300 for the supply of boxes alone was enough motivation.  She learned to haunt the campus hallways and staircases, the bookstore ramp, the new Mental Health office finishing its move into the old TKE house.  A dear friend, Anne Price, sponsored a Garage Sale at her house for Jan the week before the move, and the $232 she cleared while lightening up on furniture possessions almost covered the $250 car repairs that week to get the old Bobcat trip safe.

Look Up, Look Way Up

Photo by Arthur Nelson Trever, 1933 Chicago World's Fair.

A Divorce Followed by Breast Cancer

by

Lois Trever

Janet and her husband decided to divorce after their two years in the Philippines; it was a very painful decision.  A short time after Janet and the children returned, she called to say there was some suspicion of breast cancer.  Not long after that, she asked me to come take care of the children during her hospitalization.

There were lists on the side of the refrigerator telling me how to cope.  As always, Janet had built a large army of true friends who were ready to help.  When Janet came home, folks brought food--one big man had, himself, baked two pies.  The refrigerator and cupboards were well stocked.

It was a very pretty house, rented from a minister.  There were swings in the backward, roller skates, swimming lessons on the calendar.  Both children, especially Sarah, were eager to show me a beautiful cemetery just back of the back yard.  We three walked there several times every day.  Sarah, will of the wisp as she was, would dance and skip ahead around a corner and disappear only to be found in a little while, full length on her back on a tombstone, long blond hair draped over the stone.  Andy was more likely to be riding his two wheeler bike off on an intersecting lane.  I don't know if I am imparting the sweet but eerie circumstances as they affected me.

The time for Janet's breast surgery arrived quickly.  The children went off for a day at a friends house.  I drove to the hospital.  When Janet came back from surgery there came her wonderful friends to be sure she could faintly hear spiritual music.  They came in many numbers, each with something comforting to bring and to do.  I found myself at the door of the room and decided to go out and walk a bit in the fresh air.  As I walked tears broke through, quickly becoming an uncontrollable torrent.  I climbed into the car but then came more tears of helplessness and sorrow.  I remembered I was near the office of Janet's favorite friends Meryl Tullis, a motherly figure in Janet's life. 

Meryl came to the door, invited me in and brought coll water and soda crackers.  I felt her concern and understanding.  As the weakening sobs continued she said, "Lois, look up, look way up."  I did so and realized that my uncontrollable tears had stopped.  There is a magic made up of actual knowledge of anatomy that stops the tears and sadness when we look up, "way up," as Meryl said.  I have often used Meryl's magic to help me.

Before I returned home Janet and I had a few happy times together, including times all four of us walked or rode bicycles in the quiet cemetery, visited by no one but us.

Sarah, Janet, Andy during that terrible/wonderful year.

Odd, my own Good Year shot last month over Daytona.  Guess its in my blood.

Strawberry Friday: Tree

Tree

I am no longer afraid of mirrors where I see the sign of the Amazon,

the one who shoots arrows.

There was a fine line across my chest where a knife entered,

but now a branch winds about the scar and travels from arm to heart.

Green leaves cover the branch, grapes hang there and a bird appears.

What grows in me now is vital and does not cause me harm.

I think the bird is singing.

I have relinquished some of the scars.

I have designed my chest with care given to an illuminated manuscript.

I am no longer ashamed to make love.

Love is a battle I can win.

I have a body of a warrior who does not kill or wound.

On the book of my body, I have permanently inscribed a tree.

Mom writes: Someone in AVANTA gave me a great poster picture of a bare breasted woman who had apparently had a mastectomy and then a beautiful vine tattooed all across her scars.  I loved it and hung it in my bedroom.  Sometime, over the years, I would hear my kids explaining my strange collection of art to their friends while they were passing through my room.

[yes, I can confirm the poster was hung prominently and proudly, and took some getting used to]


Photograph by Halla Hammid, words by Deena Metzger, poster design by Shiela Levrant de Bretteville.
Image credit: Deena Metzger, as viewed on http://www.fawi.net/BC/heroines.html
Text viewed at http://www.donnellycolt.com/catalog/humrightposter.html

Strawberry Story: Do not stand at my grave and weep

Do not stand at my grave and weep

I am not there I do not sleep

Do not stand at my grave and mourn

I am not there I have been born

I am the four strong winds that blow

I am the diamond glint on snow

Do not stand at my grave and weep

I am not there I do not sleep

Do not stand at my grave and mourn

I am not there I have been born

I am the sunlight on ripened grain

I am the gentle autumn rain

When you wake in the morning hush

I am the swift uplifting rush

Of quiet birds in circling flight

I am the soft starlight at night

Do not stand at my grave and weep

I am not there I do not sleep

Do not stand at my grave and mourn

I am not there I have been born

I LOVE this poem.  I first learned it as a song in Silver and Burgundy Singers at Blevins Junior High.  I heard it again at Virginia Satir's memorial in Crested Butte in 1988 (photo above is from her balloon releasing in 1987 one year earlier from http://satirtraining.org/training/general_information).  And of course I think of it every time I see a diamond glint on snow or need my own morning uplifting rush.

Authorship of the poem is an interesting divergent story.  Read website of authorship debated for more information.

Strawberry Story: Lyrics to an Unknown Song

If I lie inside the covers
With the darkened warm of breathing-only me
And I curl up like a kitten,
Closing all the blankets very carefully,
Perhaps the goblins will not find me,
Will not touch me, maybe even go away

If I climb onto a tree limb
With the shiny leaves in bunches
Hiding me
And I never move to stir them,
Sitting motionless and waiting quietly,
Perhaps the bullies will not find me,
Will not touch me, maybe even go away.

If I watch a funny movie
With lovely couples all surrounding me,
And I eat the salty popcorn
And the candy
Till I'm laughing painfully,
Perhaps the worries will not find me,
Will not touch me, maybe even go away.

If I only talk politely
To the friends who never fair
Inviting me
And I skim the paper lightly,
Glancing at the news reports just casually,
Perhaps the questions will not find me,
Will not touch me, maybe even go away.

If I tumble in the grasses
With another who pretends he's loving me,
And we exchange the little gesture,
Little phrases of the way
Love ought to be,
Perhaps the loneliness won't find me,
Will not touch me, maybe even go away.

If I lie inside the covers with the darkened warm of breathing-only me,
And I curl up like a kitten,
Closing all the blankets very carefully,
Perhaps my life will jnot find me,
Never touch me, Maybe even go away, go a way.

** This is a song mom heard in South Dakota in the late 1970s.  She didn't know who wrote it, but included it in her book as it represented to her the option of hiding from life, in her words "the choice that is always there and that at painful times often looks the most inviting."  Do you recognize it?  Let me know!

Chapter 5: Lightening



 Lightening by Ramona Handel

"Lightening won't strike in the same place twice.  Janet won't have cancer.  If I think positive, it won't happen."

These were the thoughts repeating through my mind like a mantra as Janet and I waited for her biopsy results.

WRONG!  Cancer can strike twice or more in the same person and positive thinking isn't enough to change the diagnosis.

Janet's Air Force doctor advised a radical mastectomy.  I knew a modified radical mastectomy was just as effective and less disfiguring with fewer medical problems later.  I also believe the military medical system was behind the private medical system in the "latest treatments" available.

Get another consult, outside the military.

The diagnosis was the same, the surgery was modified, and performed by one of the best surgeons available in the community.  It was well known in the private medical community that he had no personal support to offer a patient but instead had great surgeon's hands.

As I visited Janet in the hospital during her recovery from surgery, a tape recorder playing chanting in the background, little did I know I would walk a similar path in the near future.

January 1981 I saw the same doctor for a lump on my breast.  He examined me, my mammogram was negative, so was the diagnosis.  I skipped out of his office into the sunshine of that crisp Dakota day with feelings of joy and gratitude.  I did not follow my own advice and get a second opinion, after all the news was good and what I wanted to hear.  Why would I ask for a different diagnosis?  I was making a mistake.

My focus was elsewhere.  I had been divorced for a year now and still adjusting to such a huge shift in our family.  I was beginning a life long process of coming out as a lesbian and staying sober.  My immune system was weakened from high stress and in retrospect I was a candidate for cancer or any stress related illness.

Eleven months later a needle biopsy of the lump showed cancer.  I had a mastectomy and my recovery was enhanced by the love and support of friends and family.  Two months before I surgery I had met and fallen in love while on a trip to Mexico.  That was a strong healing factor through my surgery, recovery, and life.  Love has a way of making life instantly more previous, as does cancer.

After the surgery and three months of chemotherapy the cancer has stayed in remission.  Not because I have made great efforts to avoid carcinogenic substances.  I eat anything and quit smoking many times each year.  In that sense I am a terrible gambler and most definitely addicted.

Cancer has been a challenge and I have been more challenged by accepting my homosexuality, accepting my parents' nonacceptance of my sexual orientation, and the resulting periods of depression and despair.  I believe I have learned to cope in better ways and the despair is in the past.

My family has come to a form of silent acceptance in sixteen years and although they do not talk about my orientation I occasionally say something about a gay or lesbian friend and there is obvious discomfort and a change in subject.  We have stopped fighting over the issue that should be a non-issue in a healthier system.

My sons are of another generation.  My younger son has come out about his lesbian mother to his friends and has talked about how difficult that is.  My older son talks freely with me about his homophobia and that he can't tell anyone about "it."

I think it is not my faith that has carried me thus far but rather the caring of friends, lovers, and family.

What I am grateful for was best said by Yeats.  "Think where man's glory most begins and ends and say my glory was, I had such friends."

Back to Basics: Camp Gongi

Aunt Gongi: roommate, bridesmaid, duck advocate...

One of the best parts of doing this blog is having mom's past be dynamic- a living, breathing part of my day where humans inter-relate and discuss.  In that spirit, I wanted to share a recent email I received from mom's iconic roommate Pat Graham, aka Gongi.  I always knew her as Aunt Gongi.  She called Loie "Nutsy Mommy," but I'll save that story for another time.


On the eve of mom's yahrzeit Gongi's email serves as a wonderful reminder to the heart of mom's book.  She didn't do it to produce a biography, or to memorialize herself in bright lights.  In a word, advocacy was the theme of her work. 


Deep felt thanks to Gongi for allowing me to post her email, and thanks also for the advocacy reminder/reprise as I move forward with this project.


From Gongi:


I have wondered what had happened to Jan's dream of a book... I also contributed to her call for material for it when she was putting together a rough draft--- but she didn't like what I sent.  She said I had inspired her to leave behind the prosthetic for the patches and that was the story she wanted me to write, but what I sent her was more like a tale of "The Odd Couple"...!!!

But during her last years and months, she emailed me a lot, mostly tracking the frustration with the health care system and other mostly earthly concerns about insurance and money.  After she died, I printed out all of those emails and have them in a three ring binder.  They are stored in a drawer along with pictures and some other items.   Would you like to have the binder of emails to add to your blog?

I have felt guilty that I have not made a story of it-- I've waited for a "call" to take it all out and do that-- but perhaps it would be better in your hands to give you some more insights into the story that is flowing out of you now.  Yes, she was sweet and romantic and spiritual and reached hearts of a wide variety of people.  But she wasn't all poetry and strawberry cream.  She was tough, too--- she had to be tough to survive, to get the system so stacked against her to work for her.  She used her charms and her wits to get what she needed to get through the worst times and to get to the next day...

I have faced a lot of my own health challenges in recent years, forcing my retirement as an economics professor in December 2009, and I have survived using a lot of your Mom's strategies including No. 1: get your health caretakers on your side.  Make sure they know you as a person, a special individual, not just another "patient."  So I have learned to know the janitor's name, the name of the aide that wheels you to X-ray, and especially the names of the CNAs and nurses.  Yes, the doctor is important, too, but those nurses and CNAs are the people who hold your life in their hands.

Your Mom knew she couldn't battle all the demons alone.  So she knew how to "use people" in a good way--- she recognized special gifts in others and knew how to appeal to them so she could learn and absorb new ideas and energy that kept her going.  She was a kind of "wheeler-dealer" in the spiritual world--- appearing to be just a sweet little kid from suburban Illinois who just wanted to be a Christian Education director in the Methodist church. She looked like a real softy, a real pushover, but I'm telling you she had to have real rock hard guts and courage to reach the people and to get to the places she did. 


I'll bet she and Elizabeth Edwards are having a bit of a chat right now!

Chapter 2: Music as Therapy

Growing up, one of the few morning rituals I can remember is mom playing Weston Priory on the record player.  The needle would hit the vinyl and the ancient voices would sing us through the melodic meditations.  The music is a time capsule. 

From their website: One of the Psalms says, "Singing makes you happy!" The community of Benedictine monks at Weston Priory finds that not only does "singing make you happy," but singing also can express a whole way of life and, at the same time, can carry the message of that way of life.

In Chapter 2 mom begins her love affair with music:

Strawberry Story: Yurok Healing Rites

This Friday I thought I wouldn't go as literal with the Strawberry Friday posting.  I wanted to share two cards mom had in her inspiration stash.