Celebrate weirdness!

Laura blowing bubbles at my wedding in Alaska.

From my surrogate mom, Laura Bernstein:

I add my enthusiastic voice to this blog, saluting Janet on what would have been her 67th earthly birthday. She was an inspiring friend and a beautiful human being. Our relationship enriched my life in more ways than I can enumerate. One huge way is the presence of her daughter Sarah in my life as a "surrogate daughter" after Janet's passing. Thank you, Janet, for all your gifts! Now I would like to share a poem I wrote years ago (part of the original book) that Janet enjoyed so much, entitled "To My Children":

TO MY CHILDREN

Celebrate weirdness!
Wine it and dine it.
Design it to fit the occasion.
Rise to it.
Deny those who try to decry it with scornful remarks and limited vision.

Elevate eccentricity!
Beware the constricting, confining, conventional congress of head shakers, heart breakers, nay sayers, soul slayers.
Dare to be different.
Delight in it.
Heighten it.
Make it your home.

Applaud anomalies!
Anchor your ship in the singular sea of uncertainty.
Savor the strangeness.
Arrange bliss in whimsical patterns-- Irregular, quirky, quite murky to those who are closed to outlandish enchantments.

Cultivate non-conformity!
Be weirdly-wise with each enterprise.
Shrink from stale definitions and pale reflections and pallid convictions.
Relish exotic delicacies of expanded views.
Tempt your palate with spicy spaciousness.

Celebrate weirdness!
Walk the wide path of surprises.
Hope rises above the horizon of those who despise it; who narrowly cut down to size every dream-seeking, scheme-speaking lover of mystery.

--Laura Bernstein

Prosthetic Eyes and Foreheads (wait for it, wait for it!)

A few years ago Eric and I were sorting through stuff in the house when he accidentally shocked himself--not with a live wire, but with a box containing two of my mother's prosthetics.  He gave a nervous laugh and handed the box over to me saying, "Look, you have your mother's eyes."

This photo tells me all I need to know about mom's esteem with the prosthesis.

Mom's long relationship with prosthetics began around age 10 and some highlights from Chapter 2 are below.  I'll scan in the 8 page chapter and post it unabridged this week, but for now this will do.

Fourth grade also marked a transition from the gauze bandage taped on my face to an artificial eye prosthesis.  It required another surgery to line the eye orbit with skin from my stomach....I was so excited about not having to wear the gauze anymore and have questions about who hit me or what happened to me.  Over the years I had asked my mom if she couldn't just paint an eye on the gauze or behind a Halloween mask for me.  I really wanted to blend in.

We started trips to downtown Chicago to get the prostheses started.  The clinician was a wonderful artist and the moon shaped part of the eyeball showing was exactly like my left eye....Sometimes it fell out, sometimes [the glue] burned, sometimes it was okay.  They got me a pair of glasses, not that I needed them, but that they helped to camouflage the seam of the circle of plastic surrounding the eye.

It took me a while to realize that although people who didn't know me didn't ask em as many questions [with the prosthetic], they were now asking my friends and family.  They were too embarrassed to ask me because it looked like I thought everything looked okay, which it didn't.




Mom and I saw TMBG in DC years ago at Wolf Trap.  What a great summer day, prosthetic foreheads and all.  The song spoke doubly to me today, "where was I, I forgot the point that I was making," seems to be the theme of the day!

Chapter 1: Extraordinary Teachers

Like the True Grit entry, this section was seredipitous for me in my own life this week as I met with my daughter's teacher (Ellie is six and in first grade like mom is during this chapter).  Mom's introduction to her first grade teacher is in bold, then Juanita's section follows.

Ellie's art, now age six.

Juanita Conrad was the tutor selected by the school system to come to our house each day and teach me First Grade.  We had wonderful times learning together, and she represented to me the quiet, still, knowing a person can achieve.  I don’t think anything could have upset her.  Her calm manner made learning easy.

One of my early childhood friends recently told me how jealous she was of my tutor and the little classroom that was set up in the den.  It had a desk, a chalk board, pens, pencils, and books right there.  It was amazing tome that this looked so enticing to someone in the regular public school system.

Our Story by Juanita Conrad

In the early 1940s we moved to Arlington Heights from downstate Illinois, when my husband accepted a teaching and coaching position at Arlington High School.  Soon we were members of the Methodist Meeting House on North Dunton Street.

One Sunday in 1946, we met a new family at church who wanted to join: Art, Lois & Janet Trever.  Janet was a bright-eyed preschooler who was eager to be enrolled in our Sunday School.  It seems that Lois, her mother, had enrolled Janet at the Presbyterian Church the week before (it was just one block down the street) before she discovered that she was in the wrong church.  Everyone had a good laugh over that one.   In a short time Lois was invited to become a teacher in the Primary Department and Art soon became active in the church as well.  He was to eventually become Chairman of the Building Committee when we built a new church one mile on the side of town.  That was quite a project.

When the time came for Janet to begin first grade she had difficulty with an eye problem and could not attend the public school.  Since I had been substitute teaching for District #25, Ralph Calbaugh, the Superintendent, asked whether I would “home teach” Janet and another little girl separately.  The district furnished the books and teaching supplies.  We followed the school curriculum, test, etc.  I first went to Janet’s home.  Trevers turned one room of their home into a classroom with a bulletin board, blackboard, etc  It was such fun teaching and we learned to know each other well.  She learned to read, to “print” the alphabet, to do math and other things that first graders do.  I think Janet’s mother was sometimes around the corner “listening in.”  Janet reminded me of little sponges that were ready to soak up any information that was presented to them.

Since then it has been interesting for me to follow Janet’s life through grade school, high school, living overseas, having Andy (born on my birthday) then Sarah.  I have tried to keep track of their activities as they grew up and then in exciting professions.

Ellie's art, now age six.

We have been so impressed to see how bravely Janet is finding her way through her health problems.  She never gives up and many good things came from her determination.  What she has learned will help other with similar problems.  We take our hats off to you, Janet!

Strawberry Story: Classic Vedanta

Vedanta sculpture- yes, I Wikipedia-ed Vedanta.

Once there was a king who was driven out of his kingdom by five enemies that overpowered him and he had to run for his life.  As he was running through the jungle he fell into a well but he got entangled in a vine and was dangling on the side.  As he looked down he saw alligators waiting to eat him.  As he looked up he saw two mice--one black, one white--chewing away at the vine which supported him.

At that moment of despair a drop of honey fell on his lips from a honey comb above the well.  The man tested the honey, closed his eyes and forgot everything except that sweetness.

The five enemies are the five senses which draw us away from our god-like nature into the material world.  The well is our death which waits for us.  The black and white mice are both the days and nights that use up the minutes of our life, and the yin and yang of our existence.  The honey (or strawberry) is joy and bliss which make use forget our fear and sorrow.

from Ann Dobkins Butler

Smiles: Mark Sloniker

Straight from Mom's intro:

I first laid eye(s) on Mark Sloniker as he played the synthesizer and entertained during an outdoor noontime program for Colorado State University.  As a music fan, I was naturally attracted to the sound, noticed he was a red-head getting way too much direct sunlight.  Between numbers I asked if he would like some sunblock and when he nodded with his dripping face, I headed out for the student union for a tube of goop for him.  We have been friends ever since.  This is a "tune" he wrote that was first an instrumental on his album True Nature, and then done as a vocal on another album where his baby son Myles makes his recording debut of giggles and coos in the background.  It is a wonderful song about the love and joys of a father and his son.

http://www.marksloniker.com/
(also check out his books of the month http://www.marksloniker.com/just-for-fun.html)

Smiles by Mark Sloniker

In your rainbow live life's colors
Reds and yellows, greens, and blues
In those colors I see smiles
Pour from deep in the heart of you

I see smiles in your month of May
There are smiles on every rainy day
Breezy smiles blowing through the air
Makes me smile just to know you care

In your rainbow live life's colors
Painting all the things we see
In each heart are fresh paint brushes
So paint a picture that sets you free

You'll find smiles in the skies of blue
There'll be smiles from every point of view
I'm in love with life when you smile at me
We see smiles when that's what we choose to see

In your rainbow live life's colors
Painting all the things we see
In each heart are fresh paint brushes
So paint the picture that sets you free

For a free download of Mark's song, click the album below to go to his website:

Chapter 1: Round One-Neuroblastoma 1949

Loie with her light and life on her shoulders.

Blog's are curious things- I'm not sure how much one is willing to read.  So in this precious space I need to convince you to read Loie's chapter in full.  Here is why:

• Advocacy has come a LONG way  Loie's account provides the historical context of cancer in 1949 from the diagnosis of neuroblastoma, to surgery, radiation and follow up.  For example, Loie is told she can not tell her daughter she lost the eye FOR A WHOLE YEAR!!!!  They also had to promise they would not tell family or friends that it was removed. 
• Doctor-patient relationship  This critical relationship starts for mom at age 5 and is a reoccuring theme until Dr. Sisson in 1999.  House calls aside, Loie recounts visiting Dr. Stephen's at HIS bedside, he near death with blood poisoning.  He observes mom's own surgery in a wheelchair, and his wife is there. 
• Coping  All her life Loie coped with guilt and grieving.  A lot of early stress was due to hospitals as an institution.  For example, parents then were not allowed because, "[t]he nurses could not deal with the children's tears if they said goodbye to the parents each day." 
• Childhood friends  One of her homecoming presents was a double sized bed so she could have sleepovers.  Overnights must have felt a long way off when they brought their fragile child home with a shaved and bandaged head. 
• Radiation treatment in 1949 (just typing it makes me shudder) The chapter ends with mom's radiation treatment.  Loie is allowed to go in the x-ray room with mom, both with lead aprons on.  She read to mom as she lay on the table.
• The "C" word  Loie describes cancer as "a frightening thing from which almost no one at that time recovered."  The family physicians reaction to mom's terminal label offers Loie hope that sustained over 50 years.
• Cost of care  The surgeon's estimates of $10,000 to remove the cancer cells fill Loie's heart with dread.  The bill arrives for only $250.  "If I could I would have kissed his feet."  Loie sent Christmas cards every year to the surgeon, and unbelievably he would always answer with thanks.
• Proverbial when it rains, it pours  Adding to a year of heartache, both of mom's grandfathers die in 1949 after the surgery.  The whole family must have felt stunned.  Sadly I understand; we lost mom and Loie both to cancer in 1999.

All these themes are set up in Loie's text and re-occur throughout mom's book.  (yes, the scan is sideways but just print it or download and rotate it, a thousand pardons).

Gasing Up on Sweet Honey

It's been a long, long work week and I'm needing to dig down deep to plunge back into the book.  I'm drawing inspiration from  Sweet Honey and Rock's "Wanting Memories."  My souls sister Laurie recommended this song for one of mom's memorial services (she had three), and I only wish I could have shared it with mom before she passed. 

I've never heard this Keali'i Reichel version before...just beautiful beautiful.

 Wanting Memories

(from CROSSINGS by Y.M. Barnwell (c)1992)

I am sitting here wanting memories to teach me
to see the beauty in the world through my own eyes.
I am sitting here wanting memories to teach me
To see the beauty in the world through my own eyes.

Strawberry Story: Buddha in a Sutra

Buddha Told a Parable in a Sutra

A man traveling across a field encountered a tiger.  He fled, the tiger after him.  Coming to a precipice, he caught hold of the root of a wild vine and swung himself down over the edge.  The tiger sniffed at him from above.  Trembling, the man looked down to where, far below, another tiger was waiting to eat him.  Only the vine sustained him.

Two mice, one white and one black, little by little started to gnaw away the vine.  The man saw a luscious strawberry near him.  Grasping the vine with one hand, he plucked the strawberry with the other.  How sweet it tasted!

Chapter One: The Tale of Teddy

Mom's teddy bear, modified over time.

The next post will dive into mom's first cancer diagnosis at age 5, but in this post--maybe more for myself--I'm so grateful Loie shared early family stories.  We still have mom's teddy bear and I've tried to explain the story of teddy found legs-sticking-up in a snowbank and never got it right.  Here it is from Loie's own pen.

When you were five months old you were given a sturdy brown teddy bear called "Teddy" whom you came to love devotedly over the years, taking him to college and to your home when you married.  He still lies on your bed or a nearby shelf.

One day long ago we drove to another suburb were I shut the car door with keys and Teddy inside.  You were still small and set up a terrible howl.  You cried and stamped to see him unreachable in the car, and you didn't let up until Daddy drove up in a borrowed car and handed out the keys.  Teddy had another adventure in our new home a year or so later.  Snow had fallen overnight and was pushed up in great piles by the snow plows.  In the days following you could not find Teddy anywhere and were distraught.  Driving down the block we noticed two brown legs sticking up and pulled on the legs and out popped Teddy.  You couldn't have been happier if I was the one who was lost in a snow pile.

Loie's Chapter Unabridged

Chatper 1: Good Morning Merry Sunshine

Good Morning Merry Sunshine

By Lois Trever

I am convinced that I would never have survived without the immeasurable amounts of love (with no strings attached, not expectations or hidden agendas), joy, and comfort that my mother has lavished on me across my entire life. She is a role model that continues to inspire everyone who has ever known her. (mom's preface to Loie's Chapter)



“Good morning, merry sunshine.
What makes you shine so soon?
You shine away the little stars
And shine away the moon.”
-A German Poem

Detail from Measure Once, Cut Twice blog featuring art by children at the DeGrazia Studio.

Dear Janet,
I know you remember hearing that greeting almost every morning of your childhood. When the grandchildren came along, Andrew and Sarah, they loved it too because you continued the tradition. In face this very morning Andrew, now twenty six years old, came bounding up the stairs of the fifty year old house where you grew up, and meeting me just getting up, sang out that very poem, complete to “and shine away the moon.” I was surprised and touched that he remembered it.

DeGrazia Madonna and Child.

However you, the sunshine of our lives, did not shine so soon on the world and us. As you know you were a wanted child. Oh, were you a wanted child. We had wished on first stars and birthday candles and prayed for a child to protect and love. We didn’t know much about teaching or discipline or any of that tough love business that might be needed years from now. We just wanted a darling baby to call our own so we wouldn’t have to listen silently to all those sometimes obnoxious friends who talked incessantly about shoe sizes and allergies and orange juice. That was really boring, but we wanted to have some of that anyway.



The day finally came, a bight end-of-August morning after the absolutely hottest summer on record. I don’t know about records really, but I knew it as the hottest summer ever. We were driving from our tiny apartment in the Irving Park area of Chicago to West Suburban Hospital where I had been born. Folks were standing at the corners waiting for the Irving Park street car to make them work. I was on a high. I wanted to lean out the car window and shout to all those unknowing people, “Look at me! I’m having a baby! We’re going to the hospital right now to have a baby!” I looked out at them eagerly, hoping they would guess. Art would be really embarrassed if I shouted to them because he was often more proper than I. I would soon have to be more proper for my role as a responsible mother.

Loie before Janet's arrival in the 1940s.

You arrived as promised and for more than four years we led an almost idyllic life. We were a little crowded in our one bedroom apartment and on a warm summer night the folks in the apartment across the way would sometimes awaken us swearing and fighting and smashing dishes so close by that in our sleep we often thought it was happening in our own place. We began thinking of a house of our own.

You were the focus of our lives. Oh, Art had his work that absorbed him weekdays and I did a few things other than be a mother, but not much. We lived on a busy street. You never in your four years played outside alone. The park was nearby, and our weekends were interesting, driving to see family and friends or to parks, zoos, or kiddie-land. During those four years you had shown your personality in many ways. You smiled and laughed a lot. Your dad loved to show you off by taking hundreds of pictures of you, almost every one smiling or laughing. The guys at work began to wonder out loud about how we got a kid that smiled all the time.




Note: Okay people, I actually have a full time job and can't just retype the entire book.  As a compromise I will take out selections but post the entire chapters as PDF if you're into reading the entire original. 

Loie's Good Morning Merry Sunshine

Note 2: play along...how many generations were featured in this blog?  Count 'em, THREE BABY!  For my posts I use Veranda without bold.  For mom's original text I use Arial bold.  I tried using colors but it makes my eyes go ga-ga...

Damn You Jewel, You Made Me Cry!

Watching the Emmy's last week I had quite a surprise. I'm not a big Jewel fan, but when she sang the In Memoriam song "The Shape of You" I had that moment when your heart and mind open up to a parallel universe. A direct line to my mourning, my loss, my sadness, and my joy at having had mom in my life.

I wanted to yell, "Damned You Jewel! You Made Me Cry!" But in truth, I'm grateful to her because these moments ten years later are fewer and far between.





Lyrics and Official Jewel Website

Jewel prefaces her performance by saying the song is in honor of a friend who passed away from cancer.

It got me thinking of the other songs that transform me.  Not just the ones mom and I shared, but the ones she never got to hear that I know she would have loved.  Those songs give me something so special, a new dynamic memory of her that proves she lives on through me.  So I take back my "Damn" and replace it with a "Thank."  Words I never thought I'd say...Thank You Jewel.

And back to Chapter 1...

Chippewa Strawberry Story

A Native American strawberry story for today...

When a Chippewa (Objibway) dies, his body is placed in a grave, in a sitting position, facing the West. The soul is supposed to start immediately after the death of the body on a deep beaten path which leads westward. The first object he comes to, in following this path, is the great oka-oka-o-min (heart berry) also known today as the strawberry, which stands on the roadside like a huge rock, from which he takes a handful and eats on his way.

It is said, that if the Iroquois let the last strawberry die out, the Iroquois would be no more.  So we should not let the strawberry die out.

Chapter 1: In the Beginning

That's right, we're going ALL the way back!

I've added some photos, but the intro is just as she wrote it.  Enjoy...

Janet age 5.

I think I would have been a shy child, adolescent, and young adult dreaming of growing up to be a competent and well liked teacher (with inspiration on some days), a loving wife and mother living in a safe middle class community: security and preserving the status quo the major goals for which I’d strive. I think I would have made a good grandmother, a stable member of my community, local school district, and home church. I think my goal in life would have been to do the right thing, to make things look good (especially on the surface), to avoid rocking the boat and getting negative attention, to be considered by all a “nice” person. Since my female relatives generally die in their 90’s in nursing homes, that probably would have been my lot as well.

Jan age 8.

But this was never to be. My bouts with cancer throughout my life have left me at the mercy of any staggering drunk, precocious child, or agitated sojourner who happens to cross my path and loudly comment on my appearance. Life’s timing has often left me without financial resources, questioning life’s fairness and meaning, struggling to get insurance, a roof over the heads of my children, and find a faith that would carry me through such rough times.

Jan on the far right in the back yard of the Dunton house, Arlington Heights, Ill.

At the same time, my brushes with cancer and the visible different in my face have brought into my life experience such extraordinary people who have enriched my life into dimensions I could never have imagined from my idyllic, safe, little world. The places I have been, the things I have done are so far from my original expectations of life. I have to come to recognize it as “stretching” into the new from the old. I am covered with stretch marks!

Jan as a teacher.

So many people have influenced and supported me these 53 years of my existence. At one point in 1992 I put out a call to friends across the country for guided imagery/visualization tapes to help me make it through a brutally rough time after the neutron radiation, and more than 30 tapes arrived in the mail in the next two weeks. I have decided to share some of these people with you as I write, to weave them into the story. I’ll begin with my mother.

Loie, mom's mom, sitting in the foreground.

(note: I can't describe my reaction to these photos.  I never saw my mother with two eyes, so her childhood pictures have always been a bit of an enigma.  In more ways than one, I can't recognize her as my mom until after she lost her eye.)

Brynner's Famous Address

You  know I had to go looking for it...

The first time I myself saw Yul Brynner was probably in his famous American Cancer Society's public service announcement.  Yul died in 1985 so that would make me no less than 12 when I first heard this ad and it's haunting message, "Now that I am gone I tell you, don't smoke.  Just don't smoke."  I remember watching that commercial, startled by the unwell man giving the speech.   





It's funny watching it now, I could have sworn he started the piece off by saying something more along the lines of: "If you're watching this, its because I'm dead."  Just goes to show how well one remembers details over time.

One important note to make is that my mother never smoked.  Well, almost never.  Mom and Loie, her mother, had a story about the first and last time they tried a cigarette.  They were together in the house when my mom found a pack of cigarette's in my grandfather's jacket pocket.  When she asked what they were and what it was like to smoke, Loie put her experimental ed theories to practice.  The two of them sat down and "shared" their first cigarette.  It would be the last cigarette for both of them.


Alright, enough of me...up next is CHAPTER ONE!

A Tale of Two Forwards, Part II

John Wayne in True Grit.

Mom had not one but two forwards.  The first I posted last week from Dr. David P. Wilkinson, fearless leader of the St. Francis of the Foothills community in Tucson in the 80s when we attended.  The second forward is from another doctor altogether, Dr. George Sisson.



Not very often does a head and neck cancer surgeon have the opportunity to write the prologue of a book written by a three time cancer survivor.  To be a long time survivor itself takes "true grit."  A person must have deep inner faith not only in his or herself, but also in mankind.  Spiritual inspiration  must be mentioned, for it is available to anyone who will open their heart and mind.

Dr. Sisson served as mom's surgeon in the 1990s at Northwestern in Chicago.  Besides mom, he had another more famous and eccentric celebrity as a patient, Mr. Yul Brynner.  Mom never met Yul, but was introduced by Dr. Sisson to the Yul Brynner Head and Neck Cancer Foundation, co-founded by Yul and Dr. Sisson in 1981.  From Dr. Sisson's forward he states the mission of the organization was to "financially give support to young investigators whose projects on the cure and treatment of head and neck cancers merit pilot funding."

Wow- I never know where these posts are going to take me, and its always some cosmic full circle.

A minor mention of "true grit" I never noticed before. I knew it was a John Wayne movie, but today the eye patch connection has me all aflutter. Add to that a strawberry moment from my own life, a breakfast with my dad and husband at the True Grit Cafe in Ridgeway, Colorado a few years ago. I even have a shirt from there. Funny the web life weaves.

Anyway, back to the Forward:

With these words may I introduce Janet Trever, a highly educated, worldly and wonderfully kind of human being who has, by facing serious challenges head on, highly motivated other cancer patients to "keep their faith" and thereby somehow, someway, undeniable encouraged healing.  Cancer patients who have been through this experience know full and well the truths expounded by Janet.

Janet has not only given of herself to other cancer patients on a one to one basis, but she has actively participated in programs such as the Yul Brynner Head and Neck Cancer Foundation which was established by Yul and myself in 1981 with the charge to financially give support to young investigators whose project on the cure and treatment of head and neck cancers merit pilot funding.  The results of these studies and investigations are of valuable help to the National Institute of Health when it selects cancer programs worthy of even more intensive funding.

Having practiced my specialty for over 50 years and been the witness of the sorrow and elation of many patients and their families, I am delighted and especially honored to make a brief statement.  I cannot overemphasize the healing power of persistent optimism and faith not only by patients, but by their doctors, other care givers, and their families--and also by the inspirational contributions of patients like Janet Trever.

To read more on the history of the Yul Brynner foundation or on Dr. George Sisson, please visit http://www.ohancaw.com/history/ and http://www.headandneck.org/.

Strawberry Story

It's Friday!!!  TGIF!

Art by family friend Ginny McComb.

To celebrate Fridays I'll be posting one of mom's treasures each week, a strawberry story.  She collected them across different cultures, different religions.  The stories are reminders to live in the present.  As mom's old screen saver used to say: Present Moment, Precious Moment.



"THE STRAWBERRY STORY...A Sufi tale" (as told to Janet Trever in 1969)

Once upon a time a man was walking through the woods and a bear began chasing him.  He ran with all this might, crashing through fallen trees and brambles, but the bear was gaining on him.  He had the misfortune to fall over the edge of a streep precipice; he fell down several times his own height, then stopped and was suspended on a prevarious ledge that immediately began crumbling.

He looked up and saw the hungry bear growling and pawing the ground above him wishing for his next meal.  He looked below him and saw a seemingly bottomless deep chasm that spelled certain death.

Then he looked in fron of him at the crumbling ledge and a cluster of wild vines his ahnds were clinging to.  He focused his attention on the vines and saw a big, red, luscious strawberry right before his eyes.  He picked the strawberry and ate it, savoring it fully.

The last thing he said was, "BEST I EVER TASTED."

A Tale of Two Forwards, Part I

"She almost looked like the song: One-eyed and one-breasted...yet she couldn't fly and she didn't eat people."

Flying Purple People Eater.

When we lived in Tucson we attended the St. Francis in the Foothills church.  I'm not sure if "church" is the right word, more like a community center for open-minded individuals willing and tolerant to most forms of meditation and reflection.  My childhood memories include working on the Man of La Mancha play that was put on during Lent by the St. Francis Players.  My own baptism, officiated by David.  And my one adult memory of attending my mom's last memorial service back in 1999.

My mom attended St. Francis and found it to be a place of healing.  David Wilkinson introduces my mother and her state of mind in the early '80s best in his Forward:


It was the Spring of 1982.  The folks at University Medical Center had "sized her up" and sent her to Saint Francis in the Foothills.  I know what that means..when someone is "sized up" and sent to a Church.  It's like the proverbial: "If all else fails...pray!"  She almost looked like the song: She was one-eyed and one-breasted...yet she couldn't fly and she didn't eat people.  Yet in the fourteen years that I have known Janet Trever she has, in her own metaphorical way, taught me how to foly, and she most assuredly has consumed many of the false impressions I have held toward healing, wholeness and wellness.  Contained within this fragile, cancer-ridden, radiation that burned, chemo-therapized body is a Soul that has manifested all the best of the world's great Faiths.


And another paragraph I wanted to share:

She has often come into my office to pray.  No, it is not the prayer one might expect: not that the cancer might be taken away, that the headaches might stop, that a lasting partner might be found....The prayers weren't even for understanding.  They were just simple little prayers: "Beloved...help me to learn from this most recent challenge."  "Lord, thank you for the gift of one breast...one ye."  The tears would often flow.  Not hers!  Mine!  And those tears were some of the most previous of my ministry.  For in those tears my eyes were opened to what real healing is.

I personally feel that Janet Trever will die.  So will I.  So will all of you reading this Forward.  What I wish to affirm through my years with Janet is that she has lived her life so fully.

To listen to David's unique sermons, check out the St. Francis website with audio and video archives.

DeGrazia's A Beautiful Burden

Some of you may recall the origin of the book's title.  When we lived in Arizona in the '80s, we lived very close to the DeGrazia Studio on Swan Road.  One of Ted DeGrazia's paintings is called "A Beautiful Burden."  Mom felt the picture to be symbolic of her own experience with cancer.  In her own words:

The Yul Brynner Head and Neck Cancer Foundation is focusing on the emotions and thoughts stimulated by this DeGrazia print.  So many head and neck cancer patients deal with facial difference in appearance, function, and adaptation.  They must work daily to transform the painful, unpleasant, or disturbing into the acceptable, and perhaps even the beautiful.  Their ingenuity ranges from designer hair styles to camouflage scarring, striking head turbans and baseball caps to bolster their self-esteem during chemotherapy and hair loss, color-coordinated eye and face patches, painful prosthetic appliances to replace ears, eyes, or nose.  Each of these people, like the lovely young girl, is doing their best for each remaining day of his or her life-- celebrating the beauty that is possible in life amidst pain and seemingly impossible challenges.

Every individual has a beautiful burden, of some sort, in their own life.

It's a beautiful image and doubly symbolic to me as mom and I must have stood in front of this image together at the studio twenty years ago, not knowing where we'd be today.

I also wanted to note that mom intended for any proceeds of the book to go to the Yul Brynner Research Foundation.  Now they have a new name, the Head and Neck Cancer Alliance, but operate in the same spirit as the organization my mom served as Executive Director up until her passing.  They do have a link to donate to the site via paypal if you'd like to contribute to the cause.

Check out the organization's History page under the About Us tab.  I couldn't link to it, but hope they don't mind a teaser ending with the reference to mom:

The Yul Brynner Head and Neck Cancer Foundation The Yul Brynner Head and Neck Cancer Foundation was created by the late actor after an abnormality was found on his vocal chord in the 1980s. With the combined vision of Yul Brynner and the knowledge and experience of Dr. George Sisson, the Yul Brynner Foundation was incorporated in Chicago in 1984 for the purpose of educating the public about the harmful effects of tobacco and its relationship to mouth and throat cancer...
...Janet Trever, who was a three-time cancer victim, began her efforts as Executive Director of the Foundation in the early 1990s and continued her mission until the day she died of this disease in 1999.

from http://www.headandneck.org/psaflash.htm and click on About Us then History tab.


More on Yul in posts to come...

Happy Birthday Jan Jan!

Forgive me mother, for I am lame.

Mom in the Philippines circa 1978.

Over 10 years ago my mother passed away after a 50 year long relationship with cancer.  January 15, 1999 to be precise.  It was her dying wish that her memoir/resource book be published.  Her book was titled A Beautiful Burden: Surviving Cancer Across a Lifetime.  She cared deeply about health and wellness of cancer survivors, as well as advocacy for those with facial differences.
Since her passing, let me be honest, I've done nothing about her book.  Sure, I sent it on to her friends who offered to edit.  I made some copies and converted files from time to time.  But really I've done nothing legitimate to get her book published.  Her book has taken on a meaning of burden all its own for me.  One she likely never intended.

Two of Janet's grandchildren Ellie and Trever with the manuscript
binder and a strawberry basket she used for inspiration while writing.

Today is her birthday, which has me thinking...you know, she never knew what the future would be like for any of us.  If she was around today, I imagine her book would be available in print.  She'd have a Facebook account to keep track of the grand kids and Tweeting with her Denver University friends.  She fancied herself a networker long before the term "Social Network" became what it is today.  Blogging would have come naturally to her.


So in honor of Janet Trever on her 67th birthday, I'd like to officially declare this blog open and welcome to receive any of her old friends, family, and bring her delightful insights, story, and resources for coping with cancer and a facially different lifestyle to a new generation.

So...TO THE BOOK!!!

I leave you with the Dedication she wrote herself:

To Virginia Satir, Lucy Meryl Tullis, and Joyce Fossen.  All three were wonderful teachers and mentors for me and have passed on from this plane of existence.  Also to Yul Brynner; I never met him before his death in 1985, but he has certainly influenced my life experience.  I like to talk to the four of them during the day as their presences watch over me.  Someday I envision they will be welcoming me to the other side...now that will really be something to write about.

Me on the left with my mom at Sun Moon Lake, Taiwan.