Burn survivors share laughter, tears at annual World Burn Congress in Anaheim
The City of Anaheim and Anaheim Fire & Rescue hosted 1,000 burn survivors for the annual gathering of members of the Phoenix Society for Burn Survivors
The following article was originally posted on Behind the Badge.
By Greg Hardesty/Behind the Badge
Hope Henkel is enjoying her first visit to California this week, spending time with some old friends – and meeting new ones – in Anaheim.
Some of her friends managed to get away to the beach during a four-day conference at the Anaheim Convention Center.
Hope, 22, of Shawano, Wis., couldn’t join them. The bottoms of her feet are too sensitive for her to walk on the sand.
On March 2, 2013, Hope, who was just about to turn 16, lost most of her family in a fiery crash on a Kentucky highway that killed six.
The SUV the family was in was rear-ended by a semitrailer truck that failed to brake when traffic slowed because of another accident.
Other motorists pulled Hope and her adopted brother, Aidian, then 13, to safety before the SUV burst into flames, killing the parents who were just about to adopt Hope, as well as a 93-year-old family friend and two of Hope’s sisters and a brother who already had been adopted.
Also killed was a girl, 8, who was going to be adopted on the same day as Hope.
Hope suffered a broken spine and burns to 43 percent of her body from the waist down. She almost lost both her feet.
She was among more than 1,000 burn survivors from around the world who assembled Oct. 2-5 for the Phoenix World Burn Congress (WBC), an annual gathering of members of the Phoenix Society for Burn Survivors, a nonprofit organization dedicated to empowering anyone affected by a burn injury.
Last hosted by the City of Anaheim and Anaheim Fire & Rescue in 2014, Phoenix WBC gives burn survivors a chance to meet fellow survivors and attend workshops and listen to speakers to help them in the various stages of their recovery.
The bonds of burn survivors run deep, and the Phoenix WBC is an outpouring of love, fellowship, joy, and tears. Hope attended her first conference, in Indiana, in 2015.
“God took away my family,” says Hope, who is expected to graduate from college next spring and become a veterinarian technician, “but he also gave me another one. There’s no one in the world except us who understand our scars and pain.”
POIGNANT MEMORIAL WALK
On Wednesday, Sept. 2, the first day of the Phoenix World Burn Congress, attendees participated in a short but poignant Walk of Remembrance in the courtyard outside the Anaheim Convention Center.
They walked past the entrance of the Hilton Anaheim and then down a street lined with palm trees and firefighters from AF&R and other O.C. fire agencies.
Several speakers then took to a stage against a towering backdrop of two AF&R trucks with a U.S. flag draped between them.
As she listened to the speakers, Hope held a picture of her late family: father Jim Gollnow, who was 65; mother Barbara Gollnow, 63; sister Sereena, 18; brother Gabriel, 10; brother Aidian, 13 (he survived); and family friend Marion, 93. Not in the picture, taken a year before the deadly crash, was sister Soledad, 8, who also died.
Anaheim Fire & Rescue last hosted the Phoenix WBC in 2014, and will be among three cities to host it moving forward, the others being Grand Rapids, Mich. (headquarters of the Phoenix Society for Burn Survivors) and Providence, R.I.
“We’re here to show support for them and to let them know we will be with them moving forward,” said AF&R Battalion Commander Brett Faulkner. “For many, this is the first time for them to be out in public.“
After the walk, AF&R Chaplain Nathan Zug called for a moment of silence before he delivered an invocation.
“Father in heaven…thank you for every person in this gathering tonight,” Zug said. “We thank you for all those who are burn survivors for their families, for their friends. Thank you for caregivers and for health professionals, for firefighters and those in the fire service — also for those in the military and in the police service. Thank you that we can gather together tonight just simply to be together.
“Thank you that we can draw strength and support from one another,” Zug said. “Thank you that we can journey together. Thank you that we can draw strength as we build a community for transformational healing.”
AF&R Chief Pat Russell, a burn survivor who was seriously injured in a structure fire several years ago, spoke about the important mission of the Phoenix Society World Burn Congress, a mission “that we hold dear in our hearts.”
Added Russell: “In my nearly 35 years of being a firefighter, I have witnessed and treated many burn patients, both citizens and firefighters, and have many times asked myself what quality of life will they return to and how will they ever move past this life-changing event.”
Russell spent several weeks in the burn ward at UCI Medical Center.
“Although my recovery was minor compared to many,” he said, “I can share many of the same thoughts of fear and uncertainty on recovering.
“It was through the efforts and care of so many medical professionals, my fire family, and my own family that we came together to help me heal both physically and emotionally.”
Amy Acton, executive director of the Phoenix Society, told the crowd that every year worldwide, 180,000 people lose their lives to fire, and millions more are injured.
“That’s a big problem,” Acton said. “If we don’t address this issue, who will do it, if not us?”
Acton talked about her own burn injury and how recovering from it first was very difficult.
“I couldn’t quite see (the) future,” Acton said. “I was weighed down with the struggle of it all, and the frustration and all the things we feel in that early part of our struggle, but when I (now) look out at you and I engage with this community, I (see) that there is hope and purpose and meaning and real success when we work together.
“I know some of you right now might be feeling really in your own story and just starting to make a step forward,” Acton continued. “And I hope being here brings you comfort and community and some joy, because you’re not alone anymore.”
Hope, who grew up in foster care after age 10, struggled after losing her family and recovering in a hospital. After that she attended a burn camp, an experience that changed her life.
She recalls the hurt she felt when people made fun of her appearance. One of her burned legs is thinner than the other, and both of her legs are severely scarred.
Hope recalls walking into a Wal-Mart in shorts.
“Somebody asked me if I had AIDS,” Hope says.
She was bullied in high school. Mean kids called her “Chicken Legs.”
Doctors told Hope she never would walk again. She proudly says she now can run a mile.
And she’s hopeful an upcoming surgery will correct her feet so she will be able to walk on the beach barefoot soon.
“It’s so beautiful here,” Hope says. “The sun is shiny and there’s something to do all times of the day, and the people are so friendly.”
Hope’s accident was horrible, “but a lot of good came out of it,” Hope says, referring to the lifelong friends she has met through the Phoenix Society and at the World Burn Congress.
Andrea Moni, an Irvine artist and mother who spoke at Wednesday’s ceremony, echoed Hope’s comment.
“In our woundedness, we can become an inspiration for others,” said Moni, who suffered serious burns to 7 percent of her body a few years ago after an accident involving an ethanol-fueled tabletop fireplace at an outdoor dinner party
“Ethanol works very fast, and it’s very hot,” said Moni, whose burns are what are known as “hidden burns” — ones that can be covered in clothing.
Moni’s husband jumped on her and put out the flames before paramedics arrived. She spent 20 days in ICU and underwent four skin grafts and other surgeries.
“During that time, I thought there’s got to be a purpose, a reason that I’m in this situation,” Moni said. “And during that time, I created a new way of doing art. Now I collaborate with other people that need healing and I create paintings, and I’m traveling around the world talking about how to make a new purpose out of what happens to us.”
Moni’s art, along with works by Yuri Boyko, will be featured at an exhibit May 2-30, 2020 at the Orange County Center for Contemporary Art called “Present: Future of the Past” (occca.org).
“I feel grateful every single day that I’m alive because I know that there’s so many people that are not because of burns and all the people that give their lives to save ours,” said Moni, a volunteer with the Phoenix Society whose mission is to bring make it a law that “flame arresters” must be put on all fuel bottles.
Russell closed the post-walk ceremony with a last alarm bell ceremony, in which a bell is rung five times in three cycles to signify that a comrade has responded to his or her last alarm.
Mary McCubbin, 28, of Michigan, attended the Phoenix WBC in Anaheim, her fourth one. She suffered burns to 90 percent of her body when a candle lit her house on fire when her parents left her alone in her crib when she was 9 months old in her native Brazil.
McCubbin lived in an orphanage for a while before being adopted into a large family of adoptees with special needs.
She said the worst part of her recovery was having to wear a mask on her face for six months after undergoing surgery when she was in the fourth grade.
McCubbin, who now is a caretaker for special-needs adults and an owner of a residential and commercial cleaning company, has been attending burn camps all her life.
She says she enjoys most the group bonding at the Phoenix WBC.
“Everyone has their story, and I like listening to them and how they made it through (recovery),” McCubbin says. “Listening to how they overcome obstacles is just really inspiring to me, and I love meeting new people.”