Healing Together

Diana Reynolds Roome
Published in Hope Magazine

In her elegant Italian-style flat in San Francisco’s Marina District, JoBeth Walt awakens every morning to the same scene. On the walls of her bedroom hang a gallery of photographs of children severely scarred by burns.

“People have trouble looking at these,” says JoBeth. “They see disfigurement, but I look at them and smile. These photos remind me of one of the best things in my life. I just see fabulous children, not their scars.”

She points out a photo of a girl who looks up at her from a note she writes, sucking thoughtfully on the top of her pen. Her eyes, nose and lips are cruelly disfigured and, JoBeth explains, she lost her mother in the fire that injured her. Next to it is a picture showing JoBeth with a child of about six sitting on her lap, the small burn-pocked arms looped around her neck, the bright face pitted with marks as if a large thumb had pressed indentations into the soft skin. But the little girl’s eyes are alive with laughter, familiarity and love.

“This is Maudene, and I am in awe of her strength and courage,” says JoBeth. “She has taught me so much about accepting my own scars.”

Though four operations and a long year of therapy have rendered many of her injuries almost invisible to the casual observer, JoBeth too is a survivor of a catastrophic fire. There was a time when she thought her wounds would never heal – especially the internal ones. She was shy and self-conscious, uncomfortable living in the body that had been so irrevocably changed. It was only years later, when she started volunteering at an annual summer camp for burn-injured children, that the pain of that terrible event slowly started to dissolve. The process was mysterious, but a kind of magic happened over a series of unforgettable moments. One of these was when a little girl called Maudene ran towards her on the first day of camp, and jumped into her arms.

“Sometimes when I look back, I feel I was robbed of my thirties,” says JoBeth. “But then I feel, I would never have known about camp and met all these people. The accident opened me to a whole other life.”

One July Sunday, 16 years ago, JoBeth and her husband, Mark Kaufman, drove to the Sacramento Delta to go waterskiing with some friends. She had been married a year and a half, and was due to start a new job the next day. Her spirits were high, the weather was glorious. When the boat was brought to the dock for fueling, she stood on board with the others as the motor started up. Nobody knew that gasoline had leaked into the bilge. As JoBeth leaned over to put on suntan lotion, she heard a whooshing sound and felt something on her left shoulder. Instantly, all four were engulfed in flames.

“All I could think about was getting into the water. I closed my eyes and crawled out of the boat. When I resurfaced, I could see the skin peeling off my arms.”

She remembers someone helping her tread water until the firefighters arrived. She also remembers Mark dog-paddling over, mustache and eyebrows singed, telling her it was okay over and over again. In fact, he was far more severely injured than either of them knew, and the next few weeks would see him fighting for his life. Shock masked JoBeth’s pain so well that she had not idea she was suffering from second and third degree burns over 38 percent of her body. She would later find out that some of her nerves had been burned away. But at the time, her thoughts were bizarrely calm and organized: “I was telling people where our car was parked, talking about keys. And I kept remembering things I had to do, like calling my sister and getting someone to fetch our dry cleaning.” But as they were transported by ambulance to the nearest emergency room, her only thought was not to lose sight of Mark. Aside from that she was aware of little, except the insistent voice in her head that kept saying, “This is not happening to me, it’s happening to someone else.”

In the emergency room her swimsuit, partially branded to her torso, had to be cut off. She was asked for the names of relatives and friends, but even then she could not grasp the gravity of the situation, and insisted she would be able to call them herself soon. When she started to shake, she was given morphine before being transported to another hospital with a fully equipped burns unit.

By this time, Mark was on a respirator and as she glimpsed him laid out on a stretcher, JoBeth kept pleading, “Don’t separate us.” But at the second hospital, she was taken away to be disrobed and photographed – a routine procedure that mortified her even in her semi-conscious condition. Then the nurses lifted her into a special tub where she was scrubbed to get the dead skin off, a process so excruciating most people scream with pain. This was only her first experience of what would become a daily ordeal, routinely requiring morphine, for weeks to come. “I never screamed,” she remembers, “though I cried a lot, and someone told me I would get this horrible look on my face.”

For a while, JoBeth was under the illusion she still had control of the situation. She remembers being warned that when she saw Mark, he would be “out of it.” Afraid she would upset her sister, she insisted on talking to her brother-in-law on the phone. “The morning after the accident, I called a friend because I had left my bed unmade in our San Francisco apartment. I wanted her to go and tidy up, and was trying to explain how to get the key. I was even worried about getting my stereo cleaned.” But by the time her family came up the next day, she was barely conscious of their presence.

Over the next few weeks, as she climbed in and out of consciousness, JoBeth had four surgeries, three of them skin grafts to her feet and arms. Her lips were swollen from burns and she was nourished through a feeding tube. Then something went wrong, and she aspirated – choked on vomit – and had to be put on a respirator. Her memories of this time are confused, without much sense of time or sequence.

“I was haunted by delirium and weird dreams,” she says. One, after a skin graft to her hand, made her believe all her fingers had melted together. She imagined the doctors looking at maps of her hands. Later, she became convinced that she and Mark had been kidnapped. Ripping out her feeding and breathing tubes, she phoned her sister and told her she must come and take her away. She was thrashing about so uncontrollably that she had to be tied down. When she developed a fever, a gnawing anxiety surfaced.

“My mother died of a high fever in hospital when I was twelve years old, and I thought I would die, too. I couldn’t speak through the respirator, so I tried to ask the nurses if this was true by spelling out letters with my fingers.” Every morning, she would wake up to someone drawing blood from her feet. She also had regular shots of morphine for pain.

“My family was scared I’d get addicted,” she says, remembering the sense of euphoria that would sweep over her body as the drug took effect. Mark suffered an allergic reaction to morphine. JoBeth had been warned from the beginning that he was in a bad state.

“When I saw him, he was totally bandaged and on a respirator,” she says. “We were worrying about each other, but were separated because we were told each needed to concentrate on healing.” Occasionally the nurses would wheel Mark in to see her, but neither was in a state to communicate much, and little irritations often became overwhelming. When Mark’s reaction to morphine made him hiccup compulsively, JoBeth remembers saying to a nurse, “Will you get him out of here, he’s driving me crazy!”

As her body started the slow process of healing, she became more lucid and nurses tried to get her to start walking again. Burned skin is notoriously itchy as it heals, and the irritation often kept JoBeth from sleeping. To compound the problem, it was impossible to find a comfortable position to lie in. Skin had been taken from her behind for grafting to other sites. The burned skin looked like raw meat when she caught sight of it between cleaning and bandaging.

“On my right arm, skin breakdown left nothing to hold the flesh together,” she recalls. “The first time I took a shower by myself, I was very scared.” Everything was an enormous effort, but she pushed herself hard, doing the prescribed exercises religiously and stretching the burned skin despite the discomfort. The second-degree burns to her face were mainly on the lips, and because the doctors considered them not so serious, she did her best to take them lightly, too, though it wasn’t easy. “First my face blew up and swelled. Then the skin peeled. After that I dropped 20-30 lbs. The first time I really looked in the mirror, I didn’t see myself.”

The next blow came when a doctor told her that it would take three to five years to heal to a point where the redness went away. “I’ll never forget that,” says JoBeth. “It was one of my lowest moments. Five years seemed forever before I would be able to face wearing short-sleeved dresses, tank tops and shorts. After that came the slow realization that life was never going to be the same.”

Despite her internal turmoil, JoBeth was determined to help pull Mark through his ordeal. He had suffered nerve damage and breathing problems from inhalation of gases, and almost died the first week after the accident. “Mark didn’t look like Mark, and he wasn’t Mark.” In fact, he was so depressed that she knew one of them had to take the lead, and determined she would focus all her efforts on getting them through the first year. “I remember saying to Mark, I have two choices. I can roll up in a ball and give up, or I can get on with it.” They would simply have to take their days, like a medicine, one dose at a time.

When they finally went home together from the hospital two months after the accident, neither was in a fit state to support the other. Simply surviving was exhausting. The massive effort of helping one another care for burn sites, get dressed (while wearing pressure garments for a year), and do daily rehabilitation exercises took a toll on their marriage.

Showering, getting dressed and putting lotion on the burns every morning were painful, arduous tasks. Blow-drying hair was a challenge for arms and hands so tight with scar tissue that it was an ordeal to lift them. Then there was camouflage makeup to apply if she was going out. When she tried returning to work, JoBeth had to get up at 5.30 to prepare for her day.

Then, as Mark started to revive, partly buoyed by her determination, JoBeth fell into a despair that was, if possible, more debilitating than her injuries. “I cried every day,” she remembers. “I woke up crying and went to bed crying. We were both so needy.”

They could no longer share a double bed because rubbing against each other was painful. Eventually Mark returned to work, but going out socially was an ordeal so they were thrown heavily upon one another for support and company. When JoBeth started venturing out, she had to face a new challenge. “People stared in horror and asked, ‘Oh my God, what’s wrong with your lips?’ I was raised in a home that placed heavy importance on appearance, so I had a rough time looking in the mirror. I was no longer JoBeth with smooth skin. I had “old lady” knees. I had to redefine who I was.”

The girl who had always enjoyed swimming, jogging, clothes and fashion found herself withdrawing more and more from situations where she would have to expose the injured parts of herself. “The hardest time was springtime, because I was so self-conscious about taking off clothes. I would dream about running happily on the beach, then look down and see scars.” JoBeth finally managed to get back to work. But her insecurity led her away from the management positions she had sought before.

“It was hard shaking hands when I was so self-conscious about them. I couldn’t stand up or sit down comfortably because my knees were stiff, and my concentration wasn’t good. I would overheat easily and felt I couldn’t breathe. Your whole system gets out of whack after a burn like this. I had terrible allergies. My toenails fell off or became ingrown, and I developed yeast infections due to the pressure garments. I felt I spent my whole life at the doctor’s that first year.”

The stress and sadness seeped deep in to her marriage. Mark and she separated, got back together, and separated again. Piece by piece, each tried to find ways to create a new life. JoBeth and her husband had excellent medical insurance, her friends and family were endlessly supportive and thoughtful. She was less outgoing, though, and the idea of going on a date still seemed remote. Aside from that, life was tolerable, yet there was an emptiness at its center that she could not find a way to fill.

Six years after the accident JoBeth happened to see a television segment about a summer camp run by California’s Alisa Ann Ruch Burn Foundation, where children with burn injuries could go to forget at least in part their relentless regimens of therapies, operations, and sometimes their parents’ natural over-protectiveness. Away from prying eyes and questions, they could simply have fun again in a safe place among others who understood how they felt. The organizers were looking for adult volunteers to help out at the camp. This news was like a revelation to JoBeth.

“I knew at once I had to be involved,” she recalls. “I spent my childhood and teenage summers going to camps, and they were always a big thing for me.” A trained recreational therapist and natural leader, she had a valuable combination of experiences to offer. She found the phone number for the AARBF and called the San Francisco office. “I joke about it now, but the first thing I said was, ‘I’m your perfect person. Let me volunteer.'” Within a week she was involved in AARBF’s work: first at fund-raising events, later helping to run a phone tree for teenagers, and eventually becoming a Board member for the local chapter.

Founded in 1971 by the mother of a child who died in a backyard barbecue accident, the non-profit organization is dedicated to burn prevention education and survivor assistance. Champ Camp, as the annual week of residential camp is known, is the largest such event for burn-injured children in the world, and has been built up largely through the dedication of its volunteers – nurses, doctors, therapists, firefighters, and adults who have suffered burns themselves. Because the staff has the training, skill and experience to take care of children who are both physically and emotionally vulnerable, some children are able to go straight to the camp from a hospital’s burn unit. Thanks to year-round fund-raising events, and a reduced-rate camp site at Wonder Valley Ranch, a beautiful, rugged resort in a remote valley between the round yellow foothills of California’s Sierra mountains, the camp is free to all who apply.

In June 1991, even though they were separated by this time, Mark drove an excited JoBeth to Champ Camp where she was to be counselor and cabin leader for teenage girls for the week. Her elation, however, was mixed with apprehension. “I didn’t know how I would react,” she remembers. “At the same time, I wasn’t sure how people would see me. ” As she walked into camp, the first counselor she saw was so badly burned that her immediate reaction was to turn back home, but Mark urged her on. “You can do it – this is perfect for you,” he said. She, too, knew she had to see it through.

When the children arrived off the buses for their first day, they brought tears to the eyes of even the most experienced volunteer staff. Many had lost limbs, hair and parts of their faces in fires or scalds that were often accidents – and in some cases the result of neglect or even intentional abuse. Though JoBeth had learned to deal with her own and Mark’s scars, she found herself overwhelmed by the extent of the suffering she saw.

“I was very scared,” she remembers. “I hadn’t seen burned children before.” Though the other volunteers seemed to touch and hug them easily and affectionately, she found it hard at first. She wondered if she really had what it took to be a counselor.

On the first night, JoBeth (whose camp name is Bam-Bam, leading to the priceless comment, after she fell off her bike once, “How’s your boo-boo Bam Bam?”) brought pretzels, crisps and drinks to the cabin, and plopped them along with herself on the floor, inviting the six girls to join her in a circle.

“I knew she was nervous,” recalls former camper Jennifer Percy, then sixteen years old. “But when the kids saw her scars, they came right out and asked her how she got burned. She automatically had a connection.” That connection quickly began to dissolve barriers, and soon they were all talking, their stories tumbling out naturally.

There is a camp rule about not asking children how they were injured, but in a situation like this talking about it comes naturally. Yet it can also be upsetting. Jennifer, who had suffered massive burns in a house fire deliberately set by her sister, had not shared the details of her experience with a lot of people, and that night she had nightmares.

“I must have been shouting in my sleep,” she recalls. “JoBeth woke me up and calmed me down. We talked extensively next day. It built an immediate bond between us, which is still there. I really trusted her, and we were inseparable that first year.”

Over the next few days, the girls and JoBeth shared experiences, defeats and triumphs, and talked about the different ways of coping with others’ reactions to their scars. Together, their confidence grew. They learned to hug in the Champ Camp manner: from “A-hugs” through to “E-hugs,” depending on how much each person can tolerate touch. They began daring each other to wear shorts and tank tops instead of long sleeves. As JoBeth helped the girls apply sun lotion and do their hair, she rolled up her own sleeves a little more each day. A girl named Suzanna, always wore white gloves up to her elbows, insisting they were pressure garments. One day, she peeled them off. It was a triumph for all of them. Before the Thursday night dance, JoBeth and the girls spent hours helping one another with hair, makeup and getting their clothes just right. JoBeth was surprised to notice that, though Jennifer’s burns were far more severe than her own, she seemed very comfortable with her body and “looked beautiful” in her short-sleeved dress.

“Jennifer had a real impact on my life. By watching these girls be so comfortable with themselves and so free, I learned so much. I thought I could be a role model for them, but they ended up being role models for me.”

Slowly, JoBeth was exposing herself more and more. As she did, she found a bit of her old self, a little of her playfulness coming back. “That first week was so overwhelming, so emotional,” she admits. “Suddenly I was no longer a burn survivor but a person.”

After she went home, she cried every day. Camp had been intense, exhausting, but she realized it was time to get a grip on her own problems. In the great scheme of things, she had been very lucky. She still had ten fingers and toes, and – thanks to conscientious exercising – a full range of motion. But since coming back to her regular world she found she was “absolutely a different person. I found little things didn’t get to me the same way. A spirit was renewed.”

Every June since then, as long as she could take time off work, JoBeth has returned to Champ Camp. Being a counselor was emotionally and physically demanding, but the rewards kept coming. Sometimes the younger girls would stroke her hands and tell her, “We still think you’re beautiful, Bam Bam.” Suzanna, of the white gloves, arrived wearing a tank top and shorts. When JoBeth complimented her on how gorgeous she looked, Susanna replied, “Thanks to you.”

“Okay, I can go home now,” JoBeth joked, but the comment made her cry with a mixture of joy and sadness. She had not realized how deeply shamed some of the children were about their burns, or how profoundly it had helped to be able to share their feelings.

On her fourth summer at camp, JoBeth noticed a little girl she hadn’t seen before, leaning against the corner of a table trying to scratch her back. “This kid was not complaining in the slightest, but I knew at once what she was feeling. When my skin was growing back I thought I was going out of my mind with itching. Her burns were so raw that the bandages still needed changing, and she was having trouble walking. But there she was cracking jokes, making comments, engaging people all the time.”

Maudene was six years old and her accident had been as sudden and catastrophic as JoBeth’s. The family kitten jumped at a lighted candle, knocking it over on to her chest and igniting her clothes. She was burned over ninety percent of her face and body, and lost all her hair. Plastic surgeons had to reconstruct her lips.

The two became friends, playing, talking, and joking around. They both loved to make things and Maudene seemed to know intuitively what JoBeth knew from her graduate training as a recreational therapist: that people heal better if they can accomplish things. Though her small hands were distorted and pitted by burns, they flew unselfconsciously about her tasks as she threaded beads for friendship bracelets, and deftly wound elastic bands around cotton tee shirts for tie-dyeing.

“I would get so excited about her spirit, energy and intelligence,” says JoBeth, whose right hand, too, is still scarred up to the knuckle. “These kids haven’t had a chance to develop a positive self image before their accidents. Yet the way Maudene dealt with problems gave me a sense I can do anything too.” Maudene is determined, as she puts it, “to go back to being beautiful, like I was.” She has such compassion as well as determination that her family hopes that she will one day be a doctor.

After Champ camp was over, JoBeth visited Maudene at Children’s Hospital, Oakland where she went for surgery that she needs (like many of the children) whenever she grows out of her skin. The following year, knowing Maudene was due for a skin-graft in early summer, JoBeth was afraid she wouldn’t be able to come to camp. She was by now director of arts and crafts and was looking forward to trying out new projects with her. But she needn’t have worried. On arrival day, “suddenly, out of nowhere Maudene jumped into my arms,” she remembers. Somehow the girl had persuaded the surgeon to operate in time for her to go to Champ Camp. But she did not want to talk about surgery, only what she was interested in doing next: archery, mud wrestling, riding, swimming, or crafts.

JoBeth Walt no longer minds when people stare at her scarred hands. “I have a different acceptance of myself now,” she says. “My losses put things in perspective, and I know better now how to deal with other people’s pain. They made me a more compassionate person.”

Recently, JoBeth won a Bridge to Life award from AARBF for her dedication and commitment not only at Champ Camp but at fund-raisers and events for the children. Jennifer, now age 25 and married, feels that she too is a stronger, more compassionate person for what she has experienced and she partly attributes the fact that she too is a camp counselor to JoBeth’s influence. “Watching her helped me understand what being a counselor meant. She is a phenomenal woman. She had a huge, profound effect on my life.”

Healing is a slow process but, says JoBeth, if these children hadn’t come into her life, it would have taken much longer. “I still find it very hard to hear stories of abuse and neglect. It agonizes me to see a child who is severely deformed by burns, and to think what kind of life they will lead. But it’s overwhelming that these kids are able to go through so much and still laugh. They remind me that I too need to keep a balance. There’s a piece of you that is changed forever by a serious accident,” JoBeth says. “But when things get bad, I look at those photographs, and they center me. Maudene, Jennifer and the others put a smile back on my face. They helped me become whole again. ”

These days she and Mark, though no longer married, are still good friends. She enjoys her work as manager of community health and volunteer services at Saint Francis memorial Hospital in San Francisco, where she came for treatment at the Burn center and for outpatient rehabilitation years ago. She can’t wait to spend a week of her vacation time at Champ Camp this summer. And she’ll be sure to wear her shorts.

Diana Reynolds Roome was a recipient of the 2000 C. Everett Koop Award for medical journalism.