Comeback Kids
At midnight, hours before she was to undergo breast cancer surgery, Jan Thielbar awakened her husband. “I asked him to help me make an impression of my breasts,” she said. “I didn’t know why.” The couple labored for two hours; then Thielbar slept fitfully before going to the hospital, where surgeons removed nearly half of her right breast.
As the healing began, Thielbar, owner of Irvine-based Make-Up Creations, found herself looking for ways to help herself and others. “I couldn’t put it down in my mind,” she said. “I kept taking out a notebook and writing ‘How am I going to do this?’ ”
Five years after surgery, Thielbar created Belle-Amie, a line of customized breast prostheses that match women’s flesh tones, shapes and sizes. She applied her mold-making, sculpture and special-effects talents to her experience as a breast cancer survivor to create a product that could benefit others undergoing similar surgery.
Researchers in the emerging field of psychotraumatology are trying to understand what drives individuals like Thielbar to rise above “seismic traumas” that may permanently devastate others and halt their progress.
“In the past, those of us who studied different types of traumas--bereavement, disasters, abuse--hadn’t talked to one another much,” said University of North Carolina’s Richard Tedeschi, who coauthored two books, “Trauma & Transformation” (Sage, 1995) and “Posttraumatic Growth” (Lawrence Erlbom Associates, 1998). “But now we’re comparing notes and building a database of knowledge.”
The researchers are finding that those who experience post-traumatic growth not only find ways to cope with their dilemmas, but derive positive benefits from them. “They ask: ‘How can I understand this? What can I use?’ ” Tedeschi said.
Many experience a shift of values, said Carolyn Aldwin, professor of human and community Development at UC Davis. A few undergo identity changes. Large percentages of those studied report heightened appreciation for what they have, rather than an increased fixation upon what they lost. They say that after the transforming event, they experienced greater closeness with loved ones, more compassion, deepened spirituality and increased self-efficacy, according to J. Curtis McMillen, assistant professor at Washington University’s George Warren Brown School of Social Work.
Researchers still don’t agree on whether such people share common personality traits or whether their family histories make a difference in how they react to profound life changes. But their stories tend to share remarkable similarities. Here are five others who chose not to be trapped:
The Sky’s the Limit
Cliff NaVeaux was the quintessential outdoorsman. He worked as a ski patrolman and a smoke jumper with the Forest Service in Missoula, Mont., parachuting from planes to suppress fires. For recreation, NaVeaux would kayak, climb mountains and go back-country camping.
But his life changed one morning in February 1987, when, while working on the ski patrol, he was engulfed by an avalanche. He was hurled down a mountainside like a rag doll, slammed against rocks and trees. When it was over, he was armpit-deep in a cocoon of snow, his right leg twisted impossibly behind him.
Physicians could not save NaVeaux’s leg. He underwent at least 12 operations, including a hemipelvectomy, in which the leg and half of his pelvis were removed.
“They said he wouldn’t make it, his injuries were so severe,” said Edmund Ward, manager of the Forest Service’s aerial fire depot in Missoula and a friend of NaVeaux’s for 27 years. “He’d lacerated his liver, bladder, tore his intestine, got an infection, and couldn’t even talk. He could only write notes. He asked, ‘Will I live?’ And I lied to him. I said he would.”
NaVeaux did live. After enduring a nightmarish rehabilitation, he eventually progressed to walking on forearm crutches. But his future remained darkly tentative.
“It had changed my life completely,” he said. “I didn’t like my appearance. I didn’t like being so dependent on my wife and friends. I’d been an independent person and, when I was in a wheelchair, I didn’t know if I wanted to keep on living. But eventually my outlook changed.”
NaVeaux was encouraged by well-intentioned acquaintances to take up computer programming. “But I knew that wasn’t for me,” he said. Instead, he announced he would return to the Forest Service as a pilot. Over the next few months, NaVeaux passed each of his flight tests on his first attempts, and scored at least 98% on all his written exams, eventually earning his private-pilot, instrument and commercial ratings.
By 1991, he was back at work as a co-pilot. The following year he was working for the Forest Service in LaGrande, Ore., as a lead pilot, a flier who arrives first at fires, drops down to 100 feet to check for hazards, then guides tankers (large airplanes carrying 3,000 gallons of fire retardant) through smoke and flames.
“I’d be the first to admit that I’d give anything to have another leg,” NaVeaux said. “But I also realize that I’ve got to move on. This has to come from inside.”
Re-Visioning the World
George Covington is an internationally renowned photographer, as well as a teacher, lawyer, journalist, former advisor to the vice president, and a disability rights advocate. Recently, Covington was guest curator of an exhibition, “Unlimited by Design,” at the Smithsonian Institution’s National Design Museum in Washington, which spotlighted consumer goods and designs that, in Covington’s words, can “level the playing field” for people with disabilities.
“Our disabilities only become ‘handicaps’ when we encounter barriers,” he said.
Diagnosed years ago with a rare form of retinal degeneration, Covington now has only 5% of normal vision--a small field in the corner of his right eye. To expand his visual vista, Covington uses a camera to take portraits of individuals he encounters. He enlarges the portraits via his computer, then studies the pictures generated by his printer. “Most people see to photograph,” he has said many times. “I photograph to see.”
For years, Covington has been rallying to destroy persistent myths about people with disabilities--that they are less intelligent, helpless eternal children. The myths, he said, have been promulgated in part by the media.
“The stereotypes are dangerous and deadly, and can even make people consider suicide,” he said. Covington urges the more than 8.5 million Americans with visual impairments to “find it within yourself to dismiss the negative stereotypes and myths. Get out there and find the technology that can help.”
Where There’s a Will . . .
A decade ago, high school literature teacher George Kerscher began losing his vision to retinitis pigmentosa. As his tunnel of vision constricted in 1985, he quit his teaching position. “I couldn’t do the job I wanted to do,” the Missoula, Mont., resident said. So he studied computer science.
The lover of books slowly discovered that reading material for the “print-disabled”--the millions of blind, deaf, visually impaired, learning-disabled and orthopedically impaired who could not turn pages--was severely limited. Kerscher vowed to change that. His efforts led to the creation of a new generation of “talking books” formatted on CD-ROMs. Users of Kerscher’s technology can load text onto their PCs, then enlarge letters, listen to synthetic speech, read material on a Braille screen or quickly search for data.
Kerscher’s goal, he said, “is to make information accessible to all.” Recording for the Blind & Dyslexic, the organization that employs Kerscher as a research fellow, plans to digitize as many as 77,000 volumes within the next three years.
“Blindness is an incredible inconvenience,” Kerscher said. “But it’s not a showstopper. There are inconveniences in every life. Don’t let them get in the way of accomplishing the things you want to do.”
The Metamorphosis
Grieving is a crucial early step in the post-traumatic healing process, said Manchester, Conn.-based cardiologist Stephen Sinatra. “The best thing a person can do is mourn their own loss--the limb, the heart tissue--because they can’t get to a higher level without going through that.”
But people challenged by physical disability or disease sometimes become emotionally numb instead, according to Burton Singerman, director of St. Francis Medical Center’s Department of Psychiatry in Pittsburgh. They may find it difficult to vent their anger. They may reject support from family, friends and people who have experienced similar crises. “This is hard for people who want to be self-reliant,” he said.
Mark Inglis, a former mountaineer and search-and-rescue ski patroller, acknowledges that before he could heal, he had to mourn. Trapped in a crevasse on New Zealand’s Mt. Cook for 13 days in November 1982 and presumed dead, Inglis developed severe frostbite on his feet.
His legs were amputated below the knees on Christmas Eve, days after his dramatic rescue.
“The hardest time in my life was the three days after the amputation,” said Inglis, now a winemaker at Montana Wines, New Zealand’s oldest and largest winery. “It’s tragic, it’s painful, but the only thing you can do is make life worth living. The main thing is to get on with it. It’s a challenge to make you a better person.”
Since that pivotal event, Inglis has completed an honors degree in biochemistry, studied immunology, learned to ski on artificial legs and become one of New Zealand’s most promising disabled cyclists. Last year, he represented the country at the Paralympic World Championships in Colorado Springs, Colo.
People emerging from extreme adversity are forced to let go of unrealistic goals, readjust expectations and discard parts of their lives that aren’t working. By doing this, they may find their worlds widening, not closing.
“These are the comeback kids,” said Charles Riley, editor in chief of WE, a magazine for disabled people. “They’re the ones who say, ‘Now it’s time for Act II.’ ”
Tedeschi found that such people develop an appreciation of paradox. Although they rely on others, ultimately they know they must manage their crisis alone. As they accept their new vulnerabilities, they also acknowledge their greater resilience. And a few discover that, in inspiring others, they can also find themselves.
The Color Purple
The ominous black shadows on Irma Flores Gonzales’ CT scan in the summer of 1989 meant only one thing: kidney cancer. Weeks later, her doctors at Portland’s Kaiser-Permanente gave her more bad news: The cancer had spread to her lungs. They asked Gonzales if she wished to take part in a chemotherapy trial that might prolong her life. But at the same time, she said, they told her to put her affairs in order.
“I thought since I’m going to go, maybe I should do something to help somebody else,” she said.
A catheter was placed in Gonzales’ chest so a small pump could continually infuse 5-fluorouracil (5-FU), a potent chemotherapeutic agent, into her body. Gonzales, the single parent of a daughter and three adopted sons, then spent time with her family, visited Paris, and even went on a citizen-sponsored North American Free Trade Agreement fact-finding mission to Mexico. When she returned to Portland, however, Gonzales enrolled in a mind-body class led by a Kaiser-Permanente cancer counselor, who asked Gonzales to pick a healing color. She chose purple and wore it each Thursday when she visited the hospital for her chemo treatment.
Her cancer began to reverse course. The doctors and nurses at Kaiser’s cancer center began to wear purple on the days she came in. A few months later, the puzzled chief of medical oncology, Tom Leimert, informed Gonzales that, though he couldn’t explain why, she had undergone a spontaneous remission.
“I was afraid to say it out loud,” Gonzales said.
The 5-FU probably was not responsible, Leimert said, because the other 57 people in the clinical trial died.
“Now I only do what I love,” Gonzales said. “I used to make lots of long-range goals, but I stopped doing that. I live a day at a time, and I think I really know what that means.”
Today, she is a board member of the National Council of La Raza, a nonprofit organization whose goal is to improve opportunities for Latinos. She also dedicates her time to Siete del Norte, a community development corporation in New Mexico.
Purple is still worn on Thursdays at Kaiser-Permanente’s cancer center, in honor of Gonzales, Leimert said. “She became our symbol of hope--that the unusual and remarkable can happen.”
Decades ago, writer F. Scott Fitzgerald mused: “Show me a hero and I will write you a tragedy.”
What is striking, Tedeschi noted, is that there are so many ordinary heroes among us who have achieved “extraordinary wisdom through their struggle with circumstances that are initially aversive in the extreme.”
