Program That Helped Thousands Began with One Survivor

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Program That Has Helped Thousands Began With One Survivor's Need to Get Back to Living

By Barbara Kammerer Quayle, MA

My life in southern California up until then had been so easy breezy. But in 1977 after surviving a rear–end car collision in which I sustained second- and third-degree burns on my face, head, back, arms and hands, my life turned upside down.

Never knowing anyone with a burn injury, I truly imagined my face would heal like after a sunburn and I would look like Barbara again.

Reconstructive surgeries and rehabilitation consumed my life for the first year after discharge. I wore pressure garments from head to toe, as well as a white plastic face mask.

Along with the physical changes and challenges, the social challenges quickly followed. No longer could I walk into a store, restaurant, or public place unnoticed. It seemed that all eyes were on me. The discomfort of such unwanted attention became overwhelming. I had no clue how to handle the stares, startled glances, whispers, intrusive and disturbing questions, obvious avoidance, and sometimes laughter.

Advice of a Friend Plants a Seed

Luckily, a dear friend guided me early on with the following advice: Walk in that restaurant with your head held high and stand up straight!

I heeded that directive and used it everywhere. It was a start. I may have been a burn victim but I did not want to act like a victim.

Every public social challenge brought me a new opportunity to figure out the best plan of action and response. I vowed not to let people I didn’t even know and may never see again ruin my day. That realization
alone was a life changer. I made a choice that I, not strangers, would control my life.

Taking the First Steps

I began projecting an image of confidence and being socially comfortable with the help of a “tool” I had developed to help me to do so. Five simple letters, S-T-E-P-S, reminded me that Self-talk, Tone of voice, Eye contact, Posture, and a Smile could help me appear confident and comfortable with myself even when I was scared. Over the years, I have shared those STEPS with hundreds of survivors.

The next tool I needed was one to respond to intrusive questions that would often strike suddenly and surprise me. In those cases, I became embarrassed, was tonguetied, and behaved awkwardly. How could I be in social control in these situations?

The Rehearse Your Response (RYR) tool was just what I needed. I created 3 short sentences that I memorized and used whenever a stranger asked a question. First, I would briefly explain how or when I was burned. Second, I would describe how I am doing now. Finally, I would politely end the conversation. For example: “I was burned in a car crash. I’m doing better with my recovery. Thanks for your concern.” (or “Thanks for asking.”)

I also realized that I could put a stop to continued questioning with boundary-setting sentences, such as “That’s all I care to discuss today.” or “I’m sure you understand.” Then I would smile and walk on. Utilizing both the RYR and STEPS tools, I finally found myself in social control.

Mixed in with all of my feelings was a touch of empathy for those who saw me and were shocked. If I had been that person, I definitely would have looked and maybe stared, too. Strangers are human beings doing the best they can…some just do it with more grace than others.

That inspired me to create what I called the staring tool. Burn survivors react in many ways when people stare. A glance out of curiosity may be a normal reaction, but a stare makes most of us feel like an object. Some of us ignore it and see the inside, others boldly stare back, and a few become aggressive and confrontational. These reactions can make you angry or upset inside for hours or leave you feeling like socializing just isn’t worth it. One day I decided that I would no longer be a victim when people stared. I decided to take social control. I found that when faced with a stare, I could use the STEPS I had developed, look the person directly in the eye, and say something like, “How are you doing?” or “How is your day going?” or “Isn’t this a beautiful day?” More often than not, people responded with conversation.  That conversation allowed them to relate to me as a person and not see me as an object.

Sharing Techniques With Others

Through the next few years, my awareness and purpose focused on developing simple and effective methods that could be used by all burn survivors to easily manage questions and stares, and to project an image of social confidence anytime and anywhere.

What started as simple set of “tools” that helped me reenter my community has become a social skills training program that has been offered to survivors, families, and burn care professionals at burn centers, regional conferences, burn camps, American Burn Association meetings, and at the annual Phoenix World Burn Congress. In addition, many burn care professionals now teach these skills to survivors and their families across the country.

Rebekah Reishus Allely, a burn rehab therapist, uses these tools to help her patients. “I am thankful for the education and training from the Phoenix Society’s Beyond Surviving Tools For Thriving for social skills, image enhancement, and reintegration,” says Rebekah. “I am thankful that I now know to have these conversations and to offer this instruction.”

Social worker Mona Krueger, who incurred a severe facial burn 33 years ago as a teenager, had to learn on her own how to navigate staring and comments out in the public eye, just as I had, often with mixed success. She believes the survival skills training now available through Phoenix Society would have benefited her greatly.

Beyond Surviving Tools for Thriving tools are key to community reintegration,” says Mona, “which is why our Phoenix SOAR program at the Legacy Emanuel Burn Center in Portland, Oregon, utilizes them whenever possible.”

Phoenix Society now offers Beyond Surviving: Tools for Thriving After a Burn Injury, as well as Image Enhancement: Creative Make-up Techniques for Burn Survivors through its Online Learning Community. The Journey Back, a unique program designed specifically to help youngsters re-enter the school community after a burn injury, is another valuable resource that can be accessed on the Phoenix Society website.

Remember, social skills can help you thrive. It may mean taking a risk and learning a new way of behaving. It may mean feeling uncomfortable at first. But, believe me, the benefits for an easier transition back to the community and getting back to life outweigh any fear or reluctance.
 

Barbara Kammerer Quayle, MA, developed the BEST (Behavioral & Enhancement Skills Training) program, now called Beyond Surviving: Tools for Thriving After a Burn Injury to facilitate community reentry for burn survivors. In addition to leading social skills workshops for fellow burn survivors, Barbara has written numerous articles and chapters on living successfully with a facial or body difference, as well as THE BOOK of Image Enhancement for Burn Survivors, a Common Sense Approach to Creating Your BEST Image, and has participated in and produced videos for burn survivors. She helped develop, is on the national advisory committee of, and is a trainer for Phoenix Society’s SOAR (Survivors Offering Assistance in Recovery) program. She has served on the Phoenix Society board of directors and is chair of the Society’s Professional Advisory Committee and PEG (Phoenix Education Grant) Scholarship Committee.

This story is an excerpt from The Phoenix Society’s® Burn Support Magazine, Issue 2, 2015. Burn Support Magazine is a tri-annual publication that contains articles on the emotional, psychological, and social aspects of burn recovery.  All Rights Reserved.

The Phoenix Society, Inc.® • 1835 R W Berends Dr. SW • Grand Rapids, MI 49519-4955 • 800.888.BURN • http://www.phoenix-society.org