Burn Victims’ Support Groups Ease Painful Transition

It was four years ago when the fire burned Doris Palacios’ Los Angeles home. Her sister escaped the flames by jumping from a second-floor window; Palacios, who was eight months pregnant, could not.

Palacios suffered third-degree burns over 90% of her body, and despite the likelihood that the infection common in serious burn cases would kill her, she survived. Her face was severely disfigured; Both arms had to be amputated. The child she was carrying, a daughter, was left with a slight case of cerebral palsy caused by birth trauma.

With that accident, Palacios became one of the 2 million Americans who are burned each year in this country. Like her, about 100,000 of these victims require special medical treatment at a burn facility.

Had Palacios been injured 10 years ago, she probably would have died, medical authorities said. At that time, people with burns over 40% of their body had only a 25% chance of living. With recent medical advances, however, less than 7% of serious burn victims die. The increased survival rate means that the seriously injured and severely disfigured must deal with a world that rarely accepts them.

“One kid asked me, ‘Are you a monster?’ ” Palacios said, recalling an incident in a shopping mall. “I’ve been getting used to that.”

Slow Recovery A burn injury can take years to heal, and recovery is both physically and emotionally painful. Patients undergo dozens of reconstructive surgeries and must wear special garments to prevent scarring. The victim’s skin itches as it begins to regenerate. The drastic change in physical appearance is accompanied by the horrified stares of the curious, strain on personal relationships and severe depression.

During her recovery at Brotman Medical Center in Culver City, Palacios, 23, joined a group of burn survivors who met each month to confront these problems. In September, when the Alisa Ann Ruch Burn Foundation started a similar group at Rancho Los Amigos Medical Center in Downey, she switched to the sessions there.

“When I started going to the group, I was really depressed,” said Palacios. “But being at the group did help. . . . I was scared. They had to really push me out (of the hospital).”

Nancy Dodge, a social worker for the burn foundation who leads the group discussions at Rancho Los Amigos, explained, “Many burn survivors experience a kind of social death. We try to prevent that from happening.”

A group’s goal is to help burn survivors regain active social lives by building their confidence and self-esteem. Survivors talk about their feelings and family members comment on how their lives have changed too. Instructional sessions are sometimes part of the meetings, teaching survivors skills that help them in social situations. At a recent meeting, group members were shown how to use makeup to hide disfigurements.

In a recent conversation at her home in Burbank, Palacios recalled the terror she felt when she was due to finally leave the hospital and how the group at Brotman helped her face the world.

Palacios said the group sessions improved her self-image and made it easier for her to go out in public.

“I thought, ‘I’m not going to look like this for all my life. I’m gonna get better,’ ” she recalled. “They gave me a lot of inspiration, really, and I started to go out shopping.”

Today Palacios said she is better.

She has adjusted well to her mechanical arms, and every morning she attaches them to a special device on the steering wheel of her car and drives Doris, the child she was carrying at the time of the fire, to school.

Although Palacios never finished high school, she is taking classes in English and psychology at Los Angeles Community College. When she’s not studying, she paints ceramic pieces, a hobby she learned during her recovery at the hospital.

“For relaxation, I go with my friends to parties and nightclubs,” she said.

It is not always easy for Palacios to go out. She described stares that often make her uncomfortable.

‘I’ll Just Stare Back’ “People will follow me around and stare,” she said. “Sometimes I just laugh. . . . When I don’t feel like being stared at, I’ll just stare back.”

Although plastic surgery, makeup and wigs can help hide disfigurements, survivors of serious burns often have to wait several years “before they look as good as they’re going to look,” said Shirley Najemnik, executive director of the Alisa Ann Ruch Burn Foundation.

“There has been a real need for post-hospital self-help groups for burn survivors,” said Najemnik. “They’re worried that when they walk into a restaurant, the manager will say they are too ugly and are driving away business and will ask them to leave. And that has happened.”

Though Brotman Medical Center and the UC Irvine Medical Center already had support groups, the Rancho Los Amigos group is the first one formed by the Ruch Burn Foundation, and the only one in the Southeast-Long Beach area.

The burn foundation picked the site because the hospital serves as a rehabilitation center for acute burn survivors after they have undergone initial recovery treatment at a burn center. The hospital has a large plastic surgery department, which offers reconstructive services to many low-income, minority patients in the area.

The group meets from 7 to 9 p.m. every third Tuesday of the month in the 900 building of Rancho Los Amigos. The meetings are open to the public.

Palacios gives full credit to the group meetings for hastening her recovery. “Had I not gone, it would have been slower,” she said, adding that many support group members have played key roles in helping her return to a normal life.

Palacios, like many other burn survivors, said she will go to group meetings long after she has recovered fully from the burns and corrective surgery.

“I think it’s mostly helping myself now. As time goes by, I’ll be able to help other people,” she said.

Much of what the group members learn, they learn from the experiences of their peers. Palacios frequently talked of the encouragement she received from burn victims Barbara Camer and Dara Marks, who were in the Brotman and Rancho Los Amigos groups.

Camer, a teacher, was apprehensive about returning to the classroom after she was burned in an auto accident seven years ago. Her face was disfigured, and several of her fingers had been amputated. “I was afraid that I couldn’t control a class again; that they would laugh at me; that the kids wouldn’t understand me,” she said.

Camer told her students about the accident, explaining burn recovery procedures. She now works for the Ruch Burn Foundation and gives one-hour presentations to the classmates of burn survivors throughout Southern California.

Before Palacios started college this fall, Camer gave the talk in Palacios’ classes.

“I would love to do what Barbara does,” Palacios said. “It gives something not only to the burned person, but to the other people in the schools.”

The respect is mutual.

On Nov. 3, Camer presented Palacios with the Bridge to Life Courage Award for the Outstanding Burn Survivor of 1984 from the Ruch Burn Foundation.

“There’s an aura about Doris--a serenity, a peacefulness, a gentleness,” Camer said. “I have seen her just evolve so much.”

Palacios cites the example of free-lance writer Marks when she talks about continuing with the group. Marks was burned in an automobile accident 14 years ago and appears completely recovered from her injuries.

At one of the Tuesday sessions at Rancho Los Amigos, Marks took Palacios aside and gave her some encouragement.

“The reconstruction on your face is coming along very nicely,” Marks said.

“No, not really,” Palacios replied.

‘It’s Hard to Tell’ “No, seriously. Believe me, I know it’s hard to tell because the process is so slow, but it’s looking very attractive,” Marks said.

“It just takes so long,” Palacios said. “But thank you.”

Marks later made the point that recovering from a burn “is a process that never ends. These groups are a place to go where you can get reassurance and hope, and see living proof that you do survive. . . . I walk away from these meetings just elevated. . . . (Group members) all come back. It becomes a family.”

Marks said she has noticed that most burn survivors say they would not change their fate if they could turn the clock back to the time before they were injured.

“They have gained something so strong emotionally from the experience,” Marks said.

At home, Palacios glanced at a portrait on her bedroom wall of an attractive, adolescent girl with smooth, tanned skin and plenty of makeup--a photograph taken of her before the fire.

“At first it was sad to think when I looked at my picture, but now it isn’t,” she said. “Maybe I wouldn’t have known the things I know now until I’m 60 or 70.”