Burn Survivors Take Cue From J.R., Advocate on Behalf of Phoenix Society

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By Nathan Caminata

 

EVERYTHING IS ILLUMINATED

Mark Harper (left) and James Bosch (center) share a laugh with Cindy at the Phoenix Society's 2011 World Burn Congress, held in Cincinnati, Ohio.Sitting just a few feet away, Cindy Rutter watched with the rest of the audience in varicolored light as J.R. Martinez quickstepped across the Dancing with the Stars stage. Watching him cartwheel in his gray suit and matching top hat before the adoration of an entire country, she beamed proudly, aware that a quantum shift was occurring in a society that has been consumed by image.

To many viewers, J.R.’s dancing moxie and epic narrative made for an enjoyable Monday night. To Cindy and the burn community, it was so much more.

EVERY STORY HAS TO START SOMEWHERE

Cindy’s life as a burn survivor began when she was 6 years old. After enduring more than 100 surgeries before her 18th birthday, with injuries suffered to her face, arms, torso, legs, and back, she decided to spend her life advocating on behalf of burn survivors.

In 1981, while serving bedside in a nursing support role, a coworker brought Cindy an article about the Phoenix Society for Burn Survivors and its founder, Alan Breslau. She didn’t waste any time getting involved. “I called to become an area coordinator, long before there was any screening of any type to become a volunteer,” she laughed.

Cindy spent her professional career ascending the nursing ladder, becoming a burn nurse and eventually a burn center nurse manager—her work perpetually underscored by advocacy to the patient population to which she had such a palpable, vivid connection.

Beyond clinical obligations, she sought to provide a sense of hope, renewal, and possibility after burn injury to hundreds of patients and their families.

ADVOCACY IN ACTION

To Cindy, advocacy isn’t necessarily lobbying, although she has been a voice for the Phoenix Society and burn community on burn prevention measures, such as the fire sprinkler initiative, which aims to require the inclusion of fire sprinklers in newly built homes.

According to Cindy, advocacy involves anything that can help prevent the occurrence of a burn injury or provide the support that should be available to burn survivors everywhere.

“When people are speaking to an audience and educating people, to me that’s advocacy,” she says. “I really feel like my life experiences both as a survivor and nurse have made me realize that I truly had a responsibility to the burn community to advocate for things that are necessary and will prevent burn injuries or help a survivor move on.

“The individuals that I meet who have sustained burn injuries feed my passion. Their stories help me daily to remember that I need to advocate for prevention, education, access to health care, and research.”

If she isn’t participating in burn camps and retreats in Southern California, Cindy can usually be found on the ground floor of whatever the Phoenix Society is planning next. “My goal,” she explains, “is to focus on the things the Phoenix Society deems worthy of advocacy."

“It is something that’s always on my mind and I try to advocate however and whenever I can. It’s a constant. Whenever there’s that opportunity, I’m out there.”

Central to Cindy’s efforts is the collaboration between burn units and the Phoenix Society to further the education offered to burn-injured patients after discharge. She is on the Phoenix Society’s Aftercare Committee, a joint project with the American Burn Association that aims to establish standards of aftercare in the areas of rehabilitation and reintegration for those who have been affected by burn trauma.

She has also been working with Barbara Kammerer Quayle, a burn survivor and consultant to the Phoenix Society, on communicating the importance of image enhancement.

“We’re helping the burn units restore as much normalcy as possible to someone who doesn’t have eyebrows or lips,” says Cindy. “It is not (just) cosmetic in the burn world.”

Her knowledge and expertise has also been extended to the Society’s Phoenix SOAR (Survivors Offering Assistance in Recovery) peer support program, for which she has led training in both the U.S. and Canada, while also serving on the program’s National Advisory Committee.

During the Phoenix Society’s World Burn Congress in Cincinnati, Ohio, last fall, Cindy’s efforts were officially recognized when she was named as a recipient of the Society’s 2011 Breslau Award. That distinction, which is the highest bestowed by the Society, is presented to an individual who has helped the Society to fulfill its mission of peer support, education, and advocacy. She has also earned the prestigious honor of California Nurse of the Year (2000) and was recognized as a “Remarkable Woman” by Redbook magazine.

“I think anyone who first meets Cindy understands she not only has a passion for what we’re doing, but she has the knowledge and experience to be an invaluable resource to the burn community,” says Amy Acton, Phoenix Society executive director.

Cindy, meanwhile, is just paying it forward.

“Without the Phoenix Society, I think many burn survivors would be lost,” she says. “I am very grateful that I have been given the opportunity to be involved and participate in many of the wonderful programs offered.”

STRENGTH IN STORY, POWER IN NUMBERS

Cindy and J.R. strike a pose at the 2010 World Burn Congress in Galveston, Texas.Even decades into Cindy’s mission, she finds her interactions at various burn camps and with fellow burn survivors result in educational opportunities; whether it’s a story that is shared on a national stage by J.R. Martinez, or in a peer support environment, the learning never ends. It’s common, she says, to encounter burn survivors who share a wonderful story of their journey, but don’t realize how valuable the information actually is.

“I believe there are people that want to do it, but they can’t, because it’s hard for them to put themselves out there,” says Cindy. “It’s a matter of time and growth, and watching other people like J.R. do it and it makes it easier for them.”

In October, Cindy was able to attend an airing of the ABC hit series, Dancing with the Stars. It was there that she realized the full gravity of J.R.’s impact as an advocate for burn survivors. The Iraq War veteran, turned actor and inspirational speaker, garnered national attention as he danced his way into the hearts of television viewers across the country.

“His smile is enough to knock you over, but his spirit is really defined and comes out in anything he does,” she says of Martinez, who also serves as a Phoenix Society board member. “He is an awesome person to have in the media spotlight, as well as a spokesperson for all who have traveled that same road."

But given the viral nature of the Phoenix Society’s message that so many have heard via J.R., now is the time for other burn survivors to “step out there,” she says.

“They need to go out there and talk about it. The Phoenix Society has to be recognized as a national resource organization. When people get out of the burn unit, if they know about the Phoenix Society, they can tap into just about anything.”

Although she isn’t surrounded by cameras or an audience or asked to dance the tango, Cindy Rutter’s tireless efforts are interwoven within the fabric of the Phoenix Society’s mission, gracefully gliding about any stage she can find to advocate.

A lot like J.R., perhaps?

“Now if I could only dance like him,” she laughs. “We would have two things in common.”

 

This story is an excerpt from The Phoenix Society’s® Burn Support News, Issue 1, 2012. Burn Support News is a quarterly 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