Peace, love, and strawberries

When the heart grieves over what it has lost, the spirit rejoices over what it has found.
   – Sufi proverb

To JanJan on her 69th Birthday: peace, love, and strawberries.

Marie Colvin

So sad to learn of the passing of Marie Colvin and in such a brutal manner. She died reporting what others couldn't see. I hope for peace in Syria, however impossible that seems today.

Stawberry Story: Hope for the Flowers

Ellie and I just finished reading this one, a treasure my mom shared with me when I was young.  Such powerful messages at any age.

Hope for the Flowers by Trina Paulus

The book follows the travels and transformation of two caterpillars, Yellow and Stripe.  Stripe is on a mission to figure out the meaning of life when he stumbles upon a pillar of caterpillars.  There must be something at the top, he figures and starts to climb.  Along the way he steps on Yellow and finds sympathy in his heart.  The descend and travel together until the call of the pillar is too strong and they part ways.

They meet...

....they frolic....

...they part...

....caterpillar bliss!

It's much, much more than a love story.  Anytime I'm waiting in a ridiculous line or fighting to get ahead I wonder: am I just in the middle of a catapillar pillar?

The truth behind the pillar is later revealed... (spoiler altert!)

BAAAAHHHH!!!!!  Caterpillar pillars everywhere!

I should post this on my mirror.

PS...If I ever got a tattoo, it would be Yellow and Stripe as caterpillars on one ankle and then them again as butterflies together on the opposite shoulder. 

Visit the authors website: http://www.hopefortheflowers.org/

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

Let's Face It

"To support a person with facial difference, look them in the eyes and smile at them." - Betsy Wilson

Ellie came home last week with a question.  "Mom, is Betsy (our cat) named after Betsy Ross?"

Two hours later Ellie had her answer.

In the summer of 1993 my mom and Loie took a road trip to  and on the way back stopped to visit Betsy Wilson, founder of the "Let's Face It!" organization.  They had a wonderful visit with Betsy, and on the way out of town spotted a pathetic, orange, flea-infested kitted on the side of a busy street.  Loie looked at my mom with puppy dog eyes, and according to legend mom said, "Go for it!"  Loie darted into traffic to collect the cat, and she's been in the family ever since.

If you do the math, Betsy is now 18+ years old.  She could have been a therapy cat- so calm and gentle.  She also has a quirk: being by grandmother's cat she comes when called in an old lady voice.  If I belt a gravely "BETSY!  BETSY!" in the air, she is sure to come.

But back to Betsy Wilson.  She is the founder of an organization with the mission (from the website): To advance knowledge about, by, and for people with facial differences and to promote their full and equal participation in society.  She comes to this work as a veteran of living with a noticable facial difference--she lost part of her face and jaw to cancer in 1972.  With a Masters Degree thesis titled The Child In the Health Care Setting, you can understand why she and my mom got on so well.  

Below is a postscript from a 1997 letter to my mom:

I lost my lower left jaw to cancer 25 years ago when I was 39 and my face is quite disfigured.  I had what they call a radical neck surgery.  At that time, I had a month of radiation, a month in the hospital and a month on an island in Maine with my husband and children.  When we got home we decided for my first evening out in public that we would go to an evening of out door professional tennis.  We had a picnic, the tennis was good and all in all it was a lovely August evening.  The way out of the stadium was hampered by too many people trying to get out of one small gate.  A boys face was about four inches from my face staring at me in horror.  I put my hands up and yelled yahhhh at him.  My friends said, "Good, Betsy is her old crazy self."  But you see I did not give any thought to what I did.  That was my introduction to living with a different face.  I felt that for the first time in my life I had a glimpse of what every one different faces every day.  Years after the surgery I learned that my anonymity is what I had lost and that my experience at the tennis match was called a "brief encounter."

I love the name of the organization by that the English woman, Christine Piff, called Let's Face It.  Christine lost her eye and palate to cancer.  Facing facial disfigurement is, I feel, a fluid ever flowing river of challenges.  My mood is often the most important factor in how I deal with being treated rudely or stared at.  Some days it does not bother me, some days I want to give the finger to the person who is staring etc.  I understand that it is animal instinct to stare at something different but many days it ticks me off and I have to honor that rage.

It took me years to really cry and be sad about losing my face.  It took a great Doctor with insight and patience to help me see that in order to live I had to "face" that sadness and rage.  I think I was so glad not to have died that I just would not let myself be sad.  Numb would describe how I was for many years.  One reason I love this work I am now doing is that once of our major goes is to "market hope."  Meeting you Janet through your tapes, the phone and then in person gives me and so many of us HOPE.

Our board of directors has an annual brainstorming session.  Ten years ago, at our first session, we decided that facial disfigurement is like a pebble in a pond.  The patient is the pebble and family, medical care givers, and the public are the ripples that need continued care and education.  Facial disfigurement is a very private experience and we want all people to know that they are not alone.  It is very exciting to think of how we are going to carry out our goal of "Educating the public to value the person behind every face."  Stay tuned.  Hugs.

For more about Let's Face It check out their website. A really great video of Betsy retelling the above story can be found by following this link.

Betsy, the cat.

Happy Birthday Jan Jan

My present sucks a little less this year (see first post).  I couldn't imagine a better gift this past year than getting to know you better and keeping you a dynamic part of my life. 

I imagine you still up in the ballroom with Yul, and Tullis, and Virginia, and Baba...all dancing while John Denver sings.

Wild Women: Well hello again

I love blogs...just because I haven't been posting doesn't mean that you all haven't been reading.  I've been in a slump, due in part to the issues apparent in mom's book.  Part III was the weaving together of many people, many resources, and many stories.  It departs from the chronological telling of mom's story and instead focuses on advocacy. 

But thanks to blog stats that I find hard to be true (9,000+?), I write renewed in my dedication to the blog.  We can do it!!!

As a thank you, I wanted to post a Wild Woman entry sent to me by my friend Daphne who first met my mom when she came to visit us in Taiwan.  To be clear, Mom would have watched and said, "Blech!" to the violence and revenge theme.  But hey, how often do I have the chance to defy my deceased mother?  Plus the footage comes from a Swedish film, "Thriller: A Cruel Picture"; my mother-in-law is Swedish and would also not approve of violence, so it's like an adolescent two-fer!