It was the summer after her high school graduation, and Amy Acton was working at a lakeside marina in her hometown of Ottawa County, Michigan. As she was moving a sailboat on a trailer, the mast hit a powerline. She suffered severe burns across her back. One person died.
It was an injury that was both physically scarring and emotionally devastating. And it led her to pursue a career as a nurse specializing in burn recovery. Later, she’d become the burn-nurse manager at the very same center she had been admitted to all those years before.
Acton knows how isolating it can be as a burn survivor — both in the immediate aftermath of an accident and for years afterward. Many survivors never meet anyone else who has experienced something similar.
Acton was a patient at the burn center for more than two months. “You beg to get out of there, and then you get out and it’s like all of a sudden people are staring at you,” she told NationSwell. Beyond her physical recovery, she also had to make the transition back into society.
“Whether it’s a very visible burn or one that you can hide with your clothes, it tends to have an impact on social interactions.”
As a nurse, she took that experience and shared it with her patients and their families. Now, she brings that same perspective to thousands of burn patients around the world at the Phoenix Society for Burn Survivors, where she’s served as the executive director since 1998.
The Phoenix Society works at every level of the burn community. The organization offers resources for survivors, both immediately and long term, through peer support, programming for children and teens, scholarships for college students, online learning and community forums. They also hold an annual conference, which brings together nearly 1,000 people from around the world, and they advocate for burn prevention through legislative initiatives and safety code adoptions.
Besides working with survivors and their families, the Phoenix Society also provides training and support for professionals in the medical and fire-service fields through in-person and online community networks.
Each year, 486,000 people receive medical treatment for burns in the United States, with 40,000 of them severe enough to require hospitalization.
There are hundreds of reasons why someone might end up in a burn unit — a grease fire, an electrical fire, an accidental combustion. Each person’s story is unique, and their paths to recovery are, too. But for many of these victims, the Phoenix Society for Burn Survivors will be on the journey with them.
“Burn survivors and their families are at the core of everything we do,” said Acton.
The Phoenix Society started in the 1970s out of Alan Breslau’s house in Levittown, Pennsylvania. After suffering major burns in a commercial airliner crash in 1963, Breslau spent five years in the hospital where he underwent 52 surgeries. As he was healing from his injuries, he met a fellow survivor in a burn unit and realized the important role that peer support plays in recovery. In 1977, the society was fully incorporated and has since expanded well beyond Levittown and now connects survivors from around the world. Along with the American Burn Association, the Phoenix Society is the largest support group for burn survivors.
One of those survivors is Christy Montoya. In March 2016, Montoya and her family took a road trip to visit friends in the mountains of Virginia. In the middle of the night, the families woke up to a fire, which quickly engulfed the house in flames. While Montoya and her family made it out alive, the two sons of her friends weren’t as lucky. After being medically airlifted to a hospital in Winston-Salem, North Carolina, Montoya woke up with major burns that covered 20 percent of her body.
But she also woke up to a fellow burn survivor. Survivors Offering Assistance in Recovery, an initiative of the Phoenix Society, had dispatched a trained volunteer to offer support, guidance and, perhaps most crucially, the kind of compassion that only someone who has been there can provide. Currently, SOAR is stationed in 77 burn units across the U.S.
The SOAR volunteer showed Montoya how to prepare for the bigger picture of her long-term recovery and how a community of fellow burn survivors could help her along the way.
“That’s been the big resource and push for me, specifically, through this journey,” Montoya said of her peer supporter. “Their burns are obvious themselves, and as a person sitting with a fresh burn, you’re able to see somebody who’s clearly gone through something difficult and made it out on the other end of it,” she told NationSwell.
The Phoenix Society works with survivors on social skills, too, like how to respond to probing questions and what to do when someone can’t stop staring. Their multi-day program for youth survivors, called Phoenix UBelong, similarly equips kids, teens and young adults with the tools they need for navigating uncomfortable social situations.
“In your regular community, there’s not typically a lot of other people like you,” said Montoya, who has become an avid advocate for fire safety. For her part, she’s learned how to handle the curiosity of strangers in the grocery store or the questions she gets from members at her church.
At the World Burn Congress, considered the world’s largest gathering of the burn community, there’s no staring, and any questions come from a genuine place. The event is a fresh reminder for burn survivors that so many others have shared life experiences.
That’s what keeps Sandra Cramolini coming back year after year. So far she’s attended 15 congresses.
“There are some survivors who have lived with their burn injury for years, sometimes 40 years, and have never talked about it,” Cramolini, a retired nursing director of the regional burn program in Fresno, California, told NationSwell. “Many of them need to feel like they’re in a safe and supportive environment.”
Cramolini stressed that it’s a supportive environment not only for the survivor but for every person who interacts with a burn patient. That’s why she encourages nurses and medical practitioners to attend — it gives them hope to see patients turn into advocates and success stories. Cramolini added that it’s also an opportunity for medical professionals to approach their work with a renewed sense of purpose.
“You walk away like, ‘Wow, this has energized me one more year,’” said Cramolini, who continues to work with survivors as an instructor for SOAR.
“Burn nursing is physically and emotionally challenging,” she added. “And when you attend the World Burn Congress, you see how well the patients can do with the right resources.”
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