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.

La Mujer Salvaje: Sonia Velasquez

Here's another remarkable "Wild Woman" in the media, though I may need a translator.  Sonia Velasquez,  originally from Colombia, refers to herself as a philanthropic journalist and a social activist: "I make a TV segment to create social awareness showing the initiatives that are making a difference in different parts of the world." 

In her own words (Source: Creative Caribbean Network):

I currently produce and present the radio show "Uniendo Mundos" "Bridging Worlds" aired on Caracol Radio Miami 1260 AM every Wednesday at 1:30 PM interviewing people who work to alleviate the pain of others.

In 2010 I produced the lifestyle series 'Dolce Vita a lo latino' TV Show, an adventure with the spirit of the Latin people building their dreams and changing the world. Stories with style and intensity presented with action, surprises and more. 'Dolce Vita a lo latino' was broadcasted in HolaVision, 12.2 digital in Palm Beach, USA.

As a Colombian journalist I am devoted to helping others. I am a peace activist who advocates for a fair world working from social media using video as a tool to express my vision.


While I saw no reference to personal information (such as any damage to her left eye), it's clear she embraces a patch lifestyle.  Seems like an understatement, she OWNS it!

Check out her cute logo:

I did see a testimonial add on the Eye Patch Store website, so if you'd like to order a similar black patch, she claims they're the most comfortable.  

From her website:

From YouTube:

Ellie likes this one because it has horses:

Photo Credit: http://www.soniavelasquez.com/
Video Credit: youtube.com

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

Ribbon Check: What Color Are You?

I had no idea there were so many ribbons to promote cancer awareness....

From the Choose Hope website:



Ribbon colors and meanings from http://www.choosehope.com/

 So mom could have chosen from lavender, pink, gold, burgundy/ivory, and I'm not sure about her neuroblastoma.  At first I thought grey, but thanks to the exhaustive awareness list on the Personalized Cause website, gold should cover it.   Come to think of it, considering the spread by the end I might as well order up the color wheel. 




From http://www.choosehope.com/ 


Reminds me too of all the colored bracelets we wore in school, stacked up our wrists almost to our elbows.  Madonna: early supporter against Melanoma?

More than raising awareness, these kinds of products let people feel like they're doing something, part of something, that can often feel so helpless.  In the spirit of deliberating over this new information of so many causes, pardon as I share some random musings.

1.  Not a fan of the black.  If I had to pick a cause, I'd want it to be bright and beautiful.  Melanoma = black?  Murder?  How bleak! 

2.  Ditto for grey.  Brain cancer = grey.  Seems like grey matter issue, so makes sense.  Grey can also be for lead poisoning, allergies, or diabetes. 

3.  There is a lot going on for orange.  Putting world hunger and feral cats into the same band category doesn't seem like a good idea.  Is there peer review for these colors? 

4.  Pearl, you are a cheater and are gray (lung cancer).  Same goes for you silver.  Interesting that you can combine them for different meanings, ie pearl next to white for non-smoker lung cancer awareness.

5.  When in doubt, wear red.  Seems to cover the most causes.

6.  I did not realize that Native American Repatriation had an awareness band: turqouis.

7.  Indigo seems to be wide open.  If you have a cause, claim it now!

8.  I didn't think about it before, but are these bands international?  There are many national interests represented for some of the colors.  For example, Save Darfur (green), Ukranian Orange Revolution of 2004, and Canadian Cancer Society is yellow.

9.  Brown, I have some issues.  Anti-tobacco causes seem to go for brown.  I get it, but again, if you're against tobacco something brighter might do.

10.  Whatever I think of the color band/ribbon system, it gets points for being open and inclusive.  I like the move towards combination colors.  How about patterns?  Maybe leopard print!

Me?  I'm a plum. 

What color are you?

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."

Fair's Fair

It's not been all rosy, folks.  Some people write and are encouraging--it means the world to me, keep it up!  Others who I thought would appreciate the blog haven't really tuned in to the medium.  And some I thought might take the blog wrong way have and are hurt.  What can I say, dynamics are a bitch.  I took a little break, loaded up some Strawberry Fridays to carry me into the spring, then got back to the work at hand. 

And there it was.

My mother writes in her draft prompting a friend to write her chapter, and I quote my mom here: "A story that probably won't make it into the book unless my gutsy daughter Sarah, a lot like you in fact, is even gutsier than I imagine."

Oh, it's there people.  In my most playful font I imagine you say, "The bitch didn't!"  Oh yes, she did.  What follows?  The story of me and my first menses.  How does this fit in with her book?  It maybe doesn't.  But it entirely fits in with this blog.  I've aired her honest laundry, and fair's fair.

I meet your challenge Janet Trever, and will raise you!  Knowing, trusting that the two of us can go there together.

So here is her version, uncensored and unabridged.  Not the way I'd tell it, but again, fair's fair.

When she left for her summer visitation with her Dad's family just before her 12th birthday, she asked me what would happen if her period began during the 3 months; many of her friends' menses had already begun.  At the airport we planned a code system so that no nosey folks at the other end would know what she was telling me.  The code we came up with: "Molly Brown's Living room."

The story could end there, but doesn't.  On her birthday, June 21st, we talked on the phone a while, I went to be early for exams the next day.  She called late at night, woke me out of a sound sleep, and all I could hear was this person babbling about some living room.  I finally woke up enough to understand.  There were no supplies in the house* for her, she needed me to talk to her Dad and take her out to a store to stock up.  I talked to him (his wife, Sarah's step-mother, was out of town at the time) and they got through the experience as best the could.  That phrase is permanently embedded in our brains to this day.

*My one correction.  WE WERE CAMPING!!!  I WAS IN THE WOODS WITH BOYS AND MEN AND MORE BOYS!!!  I made my dad drive to a phone in the middle of nowhere (in North Dakota already, keep in mind) in the middle of the night to pass the code phrase on to my mom so she could explain to my confused father.  I couldn't tell him what was happening, just that I needed a phone. 

In the end you would not believe my luck.  Hours from home, my dad drove to the nearest convenient store.  Ready for the miracle?  My beloved sister just HAPPENED to be at the same store in the middle of the woods and saved me from a death by humiliation in sparing my dad from the purchase and explanation of the bags contents.  Thanks Charlotte, I still owe you!

The walls people, check out the walls.  Also, check definition of TMI.

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!