FACING THE WORLD: A BURN SURVIVOR'S STORY

THE BALTIMORE SUN

Ann Kuebler will never forget the commuter who stared from his seat on the Washington Metro, then said to her, "I'd die if I

looked like you."

She'll always remember the woman who rushed up to her at the cab stand outside a local hospital and asked: "Were you on TV?" And the total stranger who approached her in the library with an article touting the balm from aloe plants. "This is really good for burns," the woman announced.

There was a time when she had to stop and think before venturing outside her home in Lutherville to run a simple errand. She would wonder if she were emotionally prepared to confront strangers or -- just as bad -- friends who had not seen her since Feb. 17, 1986, the day fire engulfed her bed, ignited her body and changed her life forever.

February marked the fifth anniversary of the fire that burned virtually all the skin off her face and ravaged her lower abdomen, thighs, hands and her right arm. Given little chance to survive, she did. Then, at age 34, she had to learn to live again.

She endured 30 or more operations (long ago, she stopped counting) in which a plastic surgeon moved sheets of skin around her body in jigsaw fashion -- stealing tissue from healthy areas to resurface the damaged places. Charred beyond recognition, her face regained much of its old contour and personality. Even so, she shows the unmistakable legacy of fire: faint, ropy scars, slightly bloated lips and a reconstructed nose that is somewhat pinched toward the tip.

Once Ann Kuebler had a face that could make heads turn in admiration. Overnight, she lost not only that but also her ability to navigate peacefully through stores and streets without inspiring a rude comment or an arresting stare. In effect, she became a walking illustration of the supreme value that society places on physical attractiveness -- and the supreme struggles faced by people who lose theirs.

"Within 24 hours, their lives are turned upside down, completelchanged," says Linda Rice, a psychologist with the Baltimore Regional Burn Center at Francis Scott Key Medical Center. "They have no preparation for it. Their sense of self in relation to the world is destroyed."

Ms. Kuebler's scars held up a mirror to people who saw her, reflecting their worst fears about mortality and their ability to cope with the tragedies of others.

"Sometimes, there are little minefields all over," she says. "I've seen people I've known intimately -- it's an emotional encounter, but nobody says anything. They have guilt for the way they feel, guilt for the way they don't feel about me.

"It's the shock of self-discovery."

Living with disfigurement forced her to reach deeper for inner strength than most people ever have to reach. But today -- thanks to the strength she found, plus the friendship of fellow burn survivors, her children and her surgeon -- she can say she hesitates little before walking out the door to confront whatever awaits her.

"I'm at the five-year mark," she told a half-dozen burn survivors who constitute a support group at Francis Scott Key. "You know there was a time when your life was gone. But you do attain small moments when you feel elated and you say, ain't it grand to be alive. With your eyes, your hands, whatever you have left.

"It does get better."

LOST MEMORIES Ms. Kuebler can't help but divide her life into two main chapters: before and after the fire. "Before," she worked nights in a Mount Vernon downtown tavern. The job provided a social circle of co-workers and patrons who would drop in for after-work drinks and chatter. The late hours left her free during the day to spend with her two boys and two girls, children with all-American looks whose athletic and academic achievements remain a continuing source of pride.

She was divorced and renting a third-floor apartment in Guilford. She was trying to give up alcohol but it was a struggle. And one night, at home alone, she settled into bed with a cigarette and a drink in hand.

"I don't know what happened," she says. "I was a recovering alcoholic and I was smoking in bed."

Six weeks later, she awoke at the Maryland Shock Trauma

Center, where she was being treated for third-degree burns -- the type that penetrate all skin layers. They covered 30 percent of her body's surface area. Fire had burned all the skin off her face and neck, obliterated her eyebrows and destroyed the cartilage of her nose -- leaving virtually no nose except the bone that forms the bridge at the very top.

A V-neck sweater made of flame-retardant material protected her chest, upper abdomen and left arm from serious injury. But fire burned her hands and her right forearm, which was exposed by the rolled-up sleeve of her sweater.

Doctors expected her to die, but not directly from the burns. Inhaled smoke caused her airways to swell to the point where she had trouble moving air in and out of her lungs -- setting up ideal conditions for a life-threatening bacterial infection.

"For about six weeks, she was totally out of it," recalls Dr. James Paskert, the plastic surgeon who later reconstructed her face, neck and the other badly burned portions of her body.

"It was felt she was going to die, but young people really have a tendency to take a hit and survive," he says.

Over the last three decades, prospects for survival havimproved dramatically for the 50,000 Americans who are hospitalized annually with serious burns -- thanks to new antibiotic creams, the proliferation of specialized burn centers and surgical advances. In the 1960s, up to 40 percent of hospitalized burn patients died. Today, less than 10 percent succumb to their injuries.

As Ms. Kuebler hovered near death, she had her most vivid dream: She was walking around an amusement park, dressed for a party. A handsome man, also fashionably dressed, sat on a Ferris wheel that had stopped to pick up new riders. He beckoned her to join him for a ride. Flattered, she stepped inside the swaying car.

"Then, I turned to get my children, and he said they couldn't come." Refusing to leave them, she struggled to get out of the car, finally bounding onto solid ground as the ride lurched forward.

"I can vividly remember being on the other side and getting back."

Nurses would tell her that she was conscious during her first day in the hospital, that she fought with them and tried to rip her breathing tube from her throat. Then she slipped into a coma that lasted days. And when she regained consciousness, doctors sent her into a drug-induced coma to spare her the pain of her surgery, especially an operation in which they grafted new tissue onto her eyelids.

All told, she was unconscious for six weeks. She was unaware of the days when nurses bathed her with wet towels, picked dead skin off her body piece by piece and redressed the exposed raw tissue -- a notoriously painful ordeal that conscious patients cannot forget months and years later.

@REBUILDING A FACE Her oldest son, Austin, recalls walking into her room for the first time and finding a woman with a shaved head, no nose and a face dressed in bandages.

"She was totally unrecognizable," says Austin, a 15-year-old high school freshman at the time. "It was pretty hard for me. I was kind of happy just to talk to her and I realized she was emotionally upset. But I didn't know what to say. I tried to talk about normal things, how things were in school."

During the two months Ms. Kuebler was initially hospitalized, Dr. Paskert resurfaced her face with patches of skin from her abdomen, chest and sides. He fashioned new eyebrows with strips of scalp cut from the back of her head. He sculpted new rims onto her ears with skin harvested from the smooth area just behind her ears.

Once discharged, she would return for additional operations at a succession of hospitals where Dr. Paskert worked. He built her a new nose, using a short length of rib for the ridge line and a tube of forearm skin for the flesh. He slipped a plastic insert under the folds of her chin to give it form. He restored her ravaged neck with large flaps of skin cut from her shoulders. It was a critically important procedure that prevented her head from getting drawn forward in the natural tightening process that occurs when burns are allowed to heal on their own.

When she left Shock Trauma, Ms. Kuebler and her children moved in with her mother in Lutherville.

"There's something very shocking to go home to a familiar environment," she says. "The contrast is startling. Everything seemed altered, but I was the one thing different."

Suddenly, Austin saw his once-strong mother so weakened that she would tumble down a short flight of stairs that a toddler could climb. "She was really upset," he says. "She said she couldn't do anything, that she was really inept. That was hard for me to deal with. I felt kind of responsible."

For a year, she wore a plastic face mask and elastic gloves called "jobsts," devices that pressed against her skin to minimize scarring. For two years, she wore a breathing tube that doctors had inserted into her windpipe at a point below the Adam's apple. Her physical appearance so appalled people that many friends and relatives refused to visit. Immediately, she felt her world shrinking.

"I wasn't drop-dead gorgeous, but I was attractive. Now, people treated you differently."

Her closest friend visited her once, engaged in pleasant conversation, then disappeared entirely from her life.

"She was very nice that evening," Ms. Kuebler says. "We talked )) about what people we knew were doing, the things that we would do when I got better. I think she handled it quite well. Then she walked away."

When her aunt and uncle visited for the first time, her aunt came inside while her uncle stayed in the car. The tavern's owner and manager, a married couple who had been her close friends, called to say they would visit. They never did. Other friends called to confirm what they had heard and to say hello. They offered some forced pleasantries, but never visited either.

Her worst fears confirmed, Ms. Kuebler dreaded going anywhere. When she braved a crowded shopping mall for the first time, she was immediately conscious of the hurried shoppers who seemed to swarm past her from all directions. "They'd just swivel and look at me. I was on exhibit, on display like a kiosk in the store. I was like merchandise. I wasn't human."

WHY WE STARE "It's natural to stare. It's hard not to," says Dr. Linda Rice, the psychologist at Francis Scott Key. "It comes out of our own anxiety. It reminds us that we're very fragile. It could happen to me."

Dr. Rice and others familiar with burn psychology agree that people's tendency to recoil also has its roots in popular culture.

"Just about every Disney character you can imagine who is evil personified has some sort of feature that's out of the normal range. Just being deformed is [associated with] evil," says Dr. Robert Spence, chief of plastic surgery at Key.

Not surprisingly, many burn survivors say they are incensed by the stardom of Freddy Krueger -- the hideously deformed character who inhabits children's worst dreams in the "Nightmare on Elm Street" films. Freddy, as the story goes, turned insanely violent after fire disfigured his face.

Dr. Rice, who helps patients to cope in this culture, says she works at teaching assertiveness. She encourages people to face friends, join support groups, get counseling and venture out in public early rather than retiring into a crippling seclusion.

"A lot go back to work, a lot change fields and a lot get involvein litigation that consumes them for years," says Dr. Rice, one of the nation's few burn-center psychologists. "A lot become very well-defended against people staring at them. It takes a couple of years, but it's doable. I've seen remarkable recoveries."

"But," she adds, "I have a suspicion that a lot of people, especially with facial burns, are lost to us. I have a feeling they are hiding out in rooms."

@SHE JUST LISTENED A year or so out of the hospital, Ms. Kuebler missed a scheduled appointment at Dr. Paskert's office. Then, she missed two more -- uncharacteristic behavior for a woman who had faithfully complied with treatment and had developed a trusting friendship with her plastic surgeon.

Ms. Kuebler, it turned out, was recovering at Mercy Hospital from a perforated stomach -- the result of a ferocious drinking binge. Dr. Paskert attributed the binge to the normal depression that strikes burn survivors who are struggling to accept the inescapable fact that they will never look the same. The alcohol ++ had caused her stomach lining to bleed profusely. "She apparently came close to dying," he says.

Ms. Kuebler didn't have a support group in the aftermath of her burn; it would be two years before Key established its network of support groups, and another year before Ms. Kuebler joined one. What she found there were a half-dozen people who had experienced similar ordeals and were eager to listen and help.

For a year, she just listened. "I didn't talk about my own experience. I'd go home and cry. All those things I'd been desperately trying to forget would come back. The meaning of how it felt. You wanted to block it out, but I needed to incorporate it into my life."

Slowly, she began to contribute. In one meeting, she and her fellow survivors shared experiences in a free-flowing exchange peppered with moments of gallows humor and blunt honesty.

"When I first came to, there wasn't a mirror in the room," said Bill Marshall, who was burned extensively five years ago in an industrial accident at Bethlehem Steel. "When I first looked down and saw my body, I went half crazy. And I tried to tear the room apart. A few hours later, the doctor and others came in to explain."

Cliff Owens, a man who lost most of his fingers in a fiery automobile accident, talked of encountering a woman in a bank who couldn't help but gawk at his hands. "I said, 'Here's a better look, bitch.' I've had the urge to do that before. Especially people standing at the checkout line. You want to take off your brace and say, 'Do you want to wear it?' "

And Ms. Kuebler: "These were traumatic, life-altering, negative experiences. The only thing I can do is share them. Maybe it's helped a little. I'm here; I didn't commit emotional suicide."

Talking to peers helped her to face horrendous memories that she had tried to bury: the shock of waking up burned, the chafing aggravation of hearing nurses remind her over and over, "You are in Shock Trauma, you are in Shock Trauma," and the horror of seeing doctors pull curtains around her bed before they wheeled the dead off the floor.

"That's when I started getting well -- listening to people discuss their hospital experience, how they felt when they woke up and faced loneliness and isolation, the way people were treating them, the things they saw in the hospital."

Having confronted her experiences, she felt better-equipped to move on.

For Austin, a turning point came the day -- two years after the fire -- when his mother showed up to watch him play basketball for Calvert Hall. It was her first public appearance in front of his friends and classmates, making the night as much a "coming out" for him as it was for her.

He played well that night, but felt uncomfortably aware of her presence throughout the game. He wondered if spectators were staring, if they knew she was his mother. "I wasn't afraid of being mocked," he says. "I just didn't want to go through the whole thing of explaining it to people. But it worked out real good."

Before that night, he had kept her accident a virtual secret, revealing it only to his closest friends. He didn't invite friends to his house; he went to theirs instead. But a remarkable thing happened when she made her condition a matter of public knowledge. His friends showed understanding and support, and talking about it wasn't quite the struggle he expected it to be.

And when he saw her sitting among the crowd, he suddenly saw the enormity of her ordeal and the depths of her courage as never before. Finally, he began to let go of his private anger toward her, anger that she had let so horrendous a thing happen. In its place grew a new respect.

Today, his mother scarcely gives a thought to appearing in public. She attends school soccer games. She took her daughter to a crowded arena to see the rock group 10,000 Maniacs. She lives on disability payments, but volunteers at the Smithsonian's Museum of American History, where she catalogs vintage advertisements -- images of American popular culture from the 19th and 20th centuries. She founded a newsletter for survivors of facial burns.

And she no longer has dreams in which she suddenly appears as the pre-burn Ann, dreams that set her up for disappointment in the morning.

"Every person who's burned facially begins to feel a duality" -- a split between life before the burn, and life that followed.

"I'd see someone and wonder whether I knew this person from before or after. I found it very hard to get back to day-to-day social existence.

"There will always be a before and after. I need to incorporate the before just as I need to incorporate the burn experience. And look, I'm here."

Says Dr. Paskert: "The story of Annie is her remarkable resilience just to survive this in the mental state she's in. She has gone back to as much of a normal life as I think I've ever seen in a patient."

On a recent trip to the Smithsonian, she walked confidently through Pennsylvania Station, took her seat on the MARC train, got off at Union Station, switched to a subway and strolled through the downtown streets. Most commuters were too absorbed in their own worlds to notice her. But some did.

A young boy walking down a train aisle stopped in his tracks and stared momentarily before his dad gently nudged him on his way. A college student encased in a down jacket looked curiously as he walked toward her at Union Station, then swung his head around as he passed.

And two teen-age girls sitting on the subway watched her as they chatted, neither acknowledging their interest to the other.

"Did anyone stare?" Ms. Kuebler asked later. She said she didn't notice.

JONATHAN BOR is medical reporter for The Sun.

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