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.

Chapter 4: The heart of the matter

Collage from the Eye Patch Quilt.

The question mom poses throughout Chapter 4 to advocate for those with facial difference is: what's it like having a one-eyed mom?  What do people without facial differences not understand about how differences on the outside translate when behind closed doors?  Read on in her words:

Having been an only child myself, I was happy that Andy and Sarah would now have each other as they experienced the uniqueness that was ours.  I often would run around the house in the early mornings or late evenings without the patch on because the elastic caused pressure on my head.  I can generally wear them 3 to 4 times before the sewing the elastic tighter again so that they don't fall down on my nose.  The warmth of my head and hair oils must do the loosening over spans of hours.  Seldom does one fit just right without being too tight or too loose.  There is very little tolerance there for exact fit.

I have learned that it is not unusual for a physically challenged person to take off a prosthesis or health-aid when they are safely at home.  It creates a dichotomy of what is appropriate for the outside world and what is only okay when no neighbors or friends are over.  The kids got to see me running for the upstairs closet that housed the patches when an early doorbell range or a dog had to be walked in a hurry.  They didn't find my appearance scary, but I knew their friends who might be spending the night would, so I had a double set of dress codes for myself.

Being a teacher, counselor, therapist type, I sometimes would ask them if it bothered them when everyone stared at us as I came to one of their school concerts, friends' birthday parties, or athletic events.  Usually they said "No," but did acknowledge that their school mates kept asking them what was wrong with their Mom and why she wore that funny thing.  I think it really helped to be open and give everyone an opportunity to talk about it.

Is this family photo from the 70s or what?

Don't worry- she tasked me with writing my own chapter on this years ago...

Chapter 4: Ear...eye...nose...patch!

Proud parents with their "babies" in their laps.

In mom's own words:

Over the next few months I saw myself assuming my own mother's role of protector.  The military well-baby checks left much to be desired in those days as you sat with your child a minimum of an hour in a waiting room crowded with many other infant/mother combinations trying to cope as we were, and a few sick kids in the waiting room mixed in.  I flashed back to what it must have been like for my Mom through those gruesome medical days with me.  What strength it took to be the defender.

I began the usual little identification games with Andy as an infant and toddler.  Soon he could sit on my lap, say and point to my "ear...eye...nose...mouth...chin...patch!"  His childhood experience would clearly have some unusual dimensions to it.

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:

From the Archives: The Wounded Healer

Chicago Tribune Northwest Spotlight

Crusader Janet Trever Proudly Bears The Scars Of Cancer Battles That Began Almost 50 Years Ago

August 17, 1997|By Kelly Womer. Special to the Tribune.

Janet Trever calls it her beautiful burden. She wears it prominently on her face, and she faces it nearly every day. Trever has survived three unrelated bouts of cancer that have left her with facial disfigurements, emotional scars and an even stronger will to make the most of each moment.

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).