Facing the Future

Barbara Quayle knows the power appearance holds for recovering burn and cancer patients.

Quayle, who runs the image enhancement program at UCI Medical Center, was disfigured 23 years ago by fire. Dozens of plastic surgeries later, the damage she suffered still is apparent.

But with the artifice of makeup and a hairpiece, and the grit she needed to navigate severe trauma, the former Anaheim junior high school teacher has recast her life and revolutionized treatment nationwide for patients disfigured by disease, injury or birth defects.

“She has helped the burn team understand how to work with burn survivors and brought up issues we are uncomfortable with,” said Rosie Thompson, a clinical nurse specialist at the University of Kansas Medical Center, who has worked with burn patients for 20 years.

“She brought to the forefront that there is still so much more to be done after a patient leaves the burn unit. . . . that if you don’t continue to help them psychologically, it has all gone for nothing.”

Quayle, who is recognized nationally for her expertise and has written on burn recovery for medical texts, runs her image enhancement program, the Associates, out of a small office near the chemotherapy infusion center at UCI’s Chao Family Cancer Center in Orange.

“What we are trying to do,” she explained, “is give people what they had before. We are normalizing patients’ appearance so they feel comfortable and confident on the inside. Then they can go back to school, go back to work, go back to community activities.”

One might expect nurses and doctors--particularly those who deal with burn survivors or cancer patients--to routinely address patients’ need for counseling, for help in dealing with radical appearance changes and simple, everyday social situations.

Not so, several experts said.

“There was really, literally zip in terms of the medical community helping me to get back in the workplace,” Quayle said, recalling her return to the classroom in 1978.

Quayle, a Seal Beach resident who is in the Governor’s Hall of Fame, recently became the first burn patient to receive the American Burn Assn.’s distinguished service award. The group recognized her not only as a role model for burn survivors but also for her two decades of groundbreaking work, which has changed the way burn specialists treat patients and view healing.

As her award citation notes, Quayle began the nation’s first hospital-based counseling center for burn patients, at Rancho Los Amigos Medical Center in Downey in the mid-1980s. She also created, from her experience as a schoolteacher, a widely imitated program that helps burned children return to school.

“Her contributions locally, statewide and nationally are very significant,” said Dr. Bruce Achauer, a plastic surgeon who directs UCI’s burn center.

Experts now agree that recovery begins in the hospital but really rests on how well patients adapt to their new life. One part of that is appearance; another is positive attitude. The two can be inextricably linked.

Yet while there has been a revolution of sorts in the way clinicians view healing, after-care and esteem building are still not an integral part of treatment in many places, Quayle and others said.

“I was quite vocal about what I saw was missing,” Quayle said. “It embarrasses the medical world. It embarrasses them about the lip service they give to the after-care part of burn care.”

Besides her advocacy work, Quayle has given clinicians a unique look into the world of the patient, allowing the doctors and nurses--who see her as a successful survivor--to view the pain and struggle necessary for her recovery.

“There are a lot of ingredients to her success that aren’t apparent,” said Thompson, the clinical nurse specialist in Kansas, who has known Quayle since the early 1980s.

Quayle was burned in Huntington Beach on Feb. 20, 1977, when the car she was riding in with her boyfriend was rear-ended. The gas tank exploded. Firefighters pulled the driver from the car but did not see her. A passerby glimpsed her through a break in the flames and saved her life.

“During that first year, I had great regret he had done that,” she said of her rescuer.

She had second- and third-degree burns on 35% of her body. The fingers of her right hand were amputated. She lost parts of her nostrils and lips. Her lower face needed multiple grafts. Before the year was over, the relationship with the boyfriend ended and she had considered suicide. She would undergo 20 surgeries in four years.

Surgeons cut into the webbing of her right hand to create a grip. She uses the stub of her thumb to press against the remnant of her third finger so she can pinch things.

“I was in tremendous need of psychological care and I didn’t get very much,” she said.

Time, guts, prayer and “a lot of inner work” have changed that. She began her consulting job in 1981 and married 10 years ago.

“A lot of people are willing to stay a victim,” she said. “There are no victims, there are just volunteers and people who get comfortable in that situation.”

Quayle is meticulous about her own appearance. Each day, she puts on a small hairpiece, then does her makeup, literally painting on lips and eyebrows where there are none.

“I am fast. It takes about 15 minutes at the most; Just like any other woman,” she said, then laughed. “There was a learning curve. I used to break into terrible tears. I found it so difficult to do. I found it difficult to create symmetrical eyebrows. It was so difficult, I would just bawl, just cry. You get pretty good at it after 20 years.”

At UCI, she has expanded the message beyond burn survival to include those with appearance-related effects of cancer treatment, traumatic injury, craniofacial reconstruction, lupus, scleroderma and other problems.

“When you have an alteration in your appearance, many of the issues are the same, in terms of people staring, people feeling ill at ease in social situations, being the odd person out,” she said.

Quayle said patients diagnosed with cancer face the added pressure of wondering: “Am I going to live?”

“It takes your breath away when you see these capable, dear, sweet, productive women, and then, on a dime, their life changes,” she said.

Quayle and the other three volunteers who run the Associates offer a supportive, private place for patients to remake their appearance and discuss how to reenter the workaday world.

“You do it here rather than with some 21-year-old clerk at a cosmetics counter trying to meet the needs of a patient who has layer upon layer of grief,” said Luanne Sims, clinical manager of the Chao center.

Tips cover the simple--such as color choices that downplay scarring or pallor--to complex issues about how to interact with the curious. The volunteers are expert in makeup and wigs, and trained to fit post-surgery breast prosthetics. They also know well the course of chemotherapy and its impact on the body--one of them has gone through it. They warn cancer patients, for instance, that when their scalp starts to itch and tingle, it’s a sign that their hair is about to fall out.

“We encourage people to have their hair cut in advance of hair loss to take control of the situation,” said Lynae Hall, a makeup expert from Newport Beach who works with Quayle.

Dawn Didion-Dunn, 47, of Trabuco Canyon selected a second wig--a short, blond one this time, for the summer--in the small Associates treatment area recently with Hall and Quayle’s help.

The three women were quite taken with her new look. The cancer patient also had more practical concerns.

“I wonder if it would stay on in the water?” asked Didion-Dunn, who was diagnosed four months ago with ovarian cancer and has been hit hard by frequent chemotherapy treatments that began three months ago.

The two volunteers smiled. Earlier, Didion-Dunn had told them she was trying to decide what to put on her head when she resumes wave-running on jet skis this spring with her husband, Doug, and son, Kyle.

As she tried on the new wig, the usually private Didion-Dunn spoke openly about her illness and how she has dealt with her treatment and its devastating impact on her confidence.

“When I looked in the mirror, I expected to see the healthy, vibrant person I was,” she recalled. “What I saw was a person with no hair and weight loss and bags under my eyes.

“I don’t see that anymore. When you put on the wig and you put on the makeup and gain some of the weight back, people aren’t going to look at you walking down the street and say: ‘There is a cancer patient.’ When I walk down the street, I don’t think anyone can tell.”

Quayle listened and added a maxim that has helped her through the struggles of the past quarter century: “Look good; feel better.”