Burn survivors and their families gathered in Chapel Hill this month to reflect on what it means to live in the aftermath of a catastrophic burn injury.
By Nancy Wang
An extensive burn can be a devastating physical, emotional and social experience. But burn survivors are more than just the people who were injured, often families can be as traumatized as the victim.
“I was also a burn survivor even though my parents were the ones who actually got burned,” Louise Nayer told an audience gathered last weekend in Chapel Hill at a reunion of burn victims, their family member and caregivers. “It took me a long time, and working through a lot of my own issues, before I realized that.”
Nayer has written a book about being the young child of parents who were severely burned and needed treatment for more than a year. She was the keynote speaker at an event held by the Jaycee Burn Center at UNC Hospital every year to bring together firefighters, doctors, nurses, burn survivors and their loved ones.
Nayer, a former creative writing professor at the City College of San Francisco, is an author who has written several books touching on her experience after her parents were horribly injured when they were in an accidental explosion while on vacation.
“Everybody has a story, and for the families of those who were burned, it’s good to recognize how it has affected you as well because if you don’t, it’s going to run your life.”
Nayer’s presentation, which included reading excerpts from her most recent book, “Burned: A Memoir,” had some members of the audience at the William and Ida Friday Center in tears.
Audience members grabbed their loved ones’ hands, nodded and wiped away tears as Nayer spoke about her experience as the child of a burn survivor. The focus on the loved ones of burn survivors was a new perspective for many of the people there.
One audience member, who asked not to be named, walked up to the open mic to talk about her mother who sustained a burn many years ago. She said she constantly worried about her mother’s safety and felt the need to protect her, but until she heard Nayer read from her book, she had not been aware of how her mother’s burns had deeply affected her.
“There’s an amazing power in a family member owning their own guilt, shame and pain,” said Rick Halpert, an attorney who works extensively representing burn survivors. “As a family member, you were burned too, just not your skin.”
Charlene Pell, a burn survivor, applauded Nayer in sharing her unique point of view and asked her how direct burn survivors could better encourage open conversation with their loved ones.
“[My mother] has horrible back pain and takes a lot of medications in order to get through the day, but she feels like in my presence, she can’t talk about her pain because it’s nothing like what I went through,” Pell said. “How do I get her to open up and to feel comfortable sharing her experience with me?”
Nayer responded Pell could seek help through therapy, saying that sometimes it takes an outside person to give everyone the permission to say what they really want.
Following Nayer’s presentation, old and new attendees were able to mingle and socialize during the lunch hour and attend several different support group meetings in the afternoon. Some attendees were regulars, having attended every reunion in the last decade or more, while others were new to the community.
“I don’t know where I would be without this Jaycee family,” said Sharon Hurley, a burn survivor who was burned in 2010 and was one of the newer attendees. “It’s so hard talking to other people who don’t understand what it’s like to be burned…it makes so many people uncomfortable, but here, everyone understands. I can’t tell you how powerful that is.”
A social death
Shirley Massey, one of the UNC chaplains who works at the Jaycee Burn Center, came up with the idea for the reunion 23 years ago when a burn patient told her about the lack of resources available once the patient was discharged from the hospital.
“She told me that we were sending her out to social death,” said Massey. “It was an incredibly powerful statement that got me thinking about how we could continue to provide some support to our burn patients even after they leave the hospital.”
The annual reunion is one of the ways UNC’s Jaycee Burn Center has worked to create a support network for burn survivors outside of the hospital in the last two decades. The center is the larger of only two burn centers in North Carolina and many of the state’s serious burn victims spend some time there. Local and regional fire departments including those in Chapel Hill and Carrboro, donate to the center. Others such as the Red Knights International Firefighters Motorcycle Club support he facility as well.
The funds go towards annual retreats for adult burn survivors and their loved ones, a camp for children who were burned called Camp Celebrate and several volunteer and assistance programs created to help patients transition back into their lives after leaving the hospital.
These programs provide former patients with the chance to interact with others who have gone through similar experiences and to learn how to deal with the unique fears, stresses and hardships that come with re-entering their old home and work environment after such a devastating trauma.
“These programs are not just for the patients, but also for [the staff at the center],” said surgeon Bruce Cairns, the Director of the center. “They help us think about things we’ve never thought of before and really make sure that we stay focused on the people.”