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"Rewriting the Myths, Redefining the Realities"

 

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Accepting My Body, Mending My Soul: Life After Severe Disfigurement

by Lorra Tamplia

Introduction 

The 9-year-old girl and her mother were on a talk show. Two years earlier, the girl’s ear was burned off in a fire. Her neck and arm were scarred. The neck scars weren’t that noticeable.

Throughout the show, the girl was in a constant state of distress, prone to fits of sobbing, as her mother related the accident to the host. The girl said she felt ugly, all the while hanging her head. Her loving mother always had an arm around her, holding her in close.

Something was dreadfully wrong here. You see, the girl’s fits of sobbing always followed those of her mother’s. The mother herself was in an ongoing state of despair, and this sent her daughter only one message: Child, I love you dearly, but you are now defective. That’s why I keep crying about you. I will always protect you and pity you.

This mother was her child’s pillar of weakness.

And so was a second mother on the show. Her 13-year-old daughter kept saying how ugly she felt, and was unable to smile or hold up her head. All she had was a 2-inch scar on her chin. The accident that caused the scar had occurred 11 years prior, but her mother was teary-eyed and distraught, even though her daughter could run, see, hear, speak and think and had no cancer or brain tumor.

This girl felt like damaged property because her mother had never gotten over the accident. And the teenage boy on the show perhaps thought, I must really look horrible, because his father kept weeping about the accident that scarred the boy’s chest a decade prior.

A child with a disfigurement will rise above the situation, only when the parents do, and when the parents "encourage the child to also do so," says Cindy Rutter of San Diego, having undergone about 100 surgeries by age 18.

A gas leak to the water heater caused a propane explosion when Rutter was 6 years old, producing third-degree burns over 85 percent of her body.

She was not expected to survive. Unable to bear the trauma, her father left the family four days after the accident. Her mother remarried two years later.

"It can be very difficult for a parent to see their child go through this, but as parents, you must lead the way and be strong", says Rutter, whose face, legs and torso/breast where heavily affected. "It is through you, as the parents, that they will see themselves grow and be self-confident. You must believe in your children as no one else can."

This means showing strength and resilience through your actions, not just telling your child she’s beautiful no matter what.

Rutter is now 47 and the assistant nurse manager of the University of California San Diego Regional Burn Unit. "I wanted to work in a burn unit and take care and inspire other patients to believe they could get through this journey. My nursing career has been a great blessing." Rutter is married and has two daughters, ages 16 and 22.

"The fact that my mom was so incredibly strong played a major role in my ultimate outcome. Even though my face was burned, my mom always taught me to hold my head high and to be proud of who I was. My family was never ashamed to be seen with me. My mother gave me the greatest gift in helping me with coping strategies and still treating me as a child, and not as someone who was horribly scarred. My mom never, ever enabled me or felt sorry for me."

This foundation of empowerment paid off during Rutter’s teen years: She dated, and attended prom. "I know that if I believe in my heart, soul and mind that I’m attractive, then that is how other people will perceive me."

Many people with facial deviations avoid social situations, even after acquiring the scars as an adult. Some actually wear masks in public, thereby creating negative attention. From within, they radiate a self-hatred, and as a result, people stay clear of them or ridicule them. A self-fulfilling prophecy is established, reinforcing the individual’s belief that nobody will ever accept him or her!

How do you wish to be remembered by someone who meets you for the first time? As a personable, self-confident individual? Or as a miserable, self-loathing one? An attitude of hopelessness is far more memorable than any facial deformity—and far more disabling!

Some people with facial Disfigurement or scars hand out silver platters to strangers—on

these platters is a giant serving of POWER. You will probably never again see these strangers, yet you have just given them the power to strip you of your joy in living, all because they kept staring at your face or asked "nosy" questions. You have made them more important than yourself, says Barbara Quayle of Seal Beach, CA, who survived a car accident at age 33 and sustained third-degree burns that scarred her face and left her without a hand.

During the first year following the accident, Quayle wished she was never rescued from the flames, often wishing she had died. Prayers, therapy and support from friends helped her heal.

"I have always thought it best to be remembered as a friendly, happy person rather than someone extremely uncomfortable with self," says Quayle, who runs Quayle and Associates, which teaches coping strategies to people with Disfigurement.

"The person who continually looks for something bad to happen, when he’s out in public, will usually experience it," adds Quayle, who believes that a simple smile by the person with a facial disfigurement can create magic.

Eye contact will not scare away other people, though many individuals with facial differences shy away from eye contact. Rutter always uses it: "It shows someone that I am confident and that I am not afraid to look at them, and they should not be afraid to look at me."

Posture, wardrobe, accessories and hairstyle can generate quite an impact, and Quayle teaches clients how to coordinate attire to bring out their best.

Think about it: Who is more likely to be the target of pity, avoidance and insensitive comments? The disfigured woman who’s wearing a stunning outfit and dynamic boots, whose hair is meticulously coiffed, whose lips and eyes are gently painted, whose fingernails are expertly manicured—or—the disfigured woman who’s wearing a drab outfit, sneakers, no jewelry, no cosmetics and whose hair is plain and limp?

Imagine being a passenger in a plane that flies into a tornado during take-off. Alan Breslau, 73, of Pennsylvania was on such a plane in 1963. The crash caused third- and fourth-degree burns over 45 percent of his body. He lost most of his face, including his nose, an eye and an ear.

He founded the Phoenix Society in 1972, an international self-help organization for burn survivors.

If your face deviates from the average, regardless of the cause, remember: YOU have the power. You can give it to strangers, or you can keep it for yourself. This is one circumstance where sharing is discouraged!

"Looking very different has its advantages," says Breslau. "People notice you and remember you. Because I’m so memorable, I have been given more opportunities than when I looked ‘normal.’ Notice how other people try to stand out in the crowd by creating outlandish appearance. They dye and spike their hair, put rings through their body parts, shave their heads. You still outshine them. No matter what they do to be noticed, they pale in comparison next to you. Make the most of it!

Use this opportunity to educate people. "After I explain and they know I’m not contagious, they become more interested in ME!" Kids and teenagers, especially, stare at those who look different. Teach them the dangers of fire or of reckless driving, if these are the causes of your disfigurement.

Otherwise, smile at them. Compliment them on their appearance or strange hairdo. You certainly won’t walk away feeling defeated.

I once saw a woman at my health club who had an apparent congenital facial anomaly: large, purple hairy splotches across her face.

She stepped onto the treadmill and away she went. Her physique was very fit-looking. Certainly, having a resilient cardiovascular and musculoskeletal system was a great source of self-esteem for her. Adhering to an exercise program will empower you, and distract you from your disfigurement.

In a society where physical beauty is prized, keep in mind that high self-esteem and a positive attitude will never fade with time.

Phoenix Society

1-800-888-BURN

Phone: 616-458-2773

Fax: 616-458-2831

email: info@phoenix-Society.org

Web:http//www.phoenix-society.org

Address: 2153 SE Wealthy Street SE - #215

East Grand Rapids, MI 49506

Quayle and Associates 

Phone: 562-431-6276

Fax: 562-431-4926

Address: 12300 Montecito Road, #49

Seal Beach, CA 90740

email: bquayle@hotmail.com

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