Burns, emotional scars linger long after the body has healed.
It was late, almost midnight, a few nights before Thanksgiving. Heather Whiles, then 20, home for the holiday from Columbia University, was cruising down Route 125 on her way from North Andover to Boston to see a friend.
She was sober, but tired, and fell asleep at the wheel.
The rest is a blur. She hit an embankment, uprooted a tree, then passed out when her car burst into flames. Two young men joyriding in a truck stopped to help, as car windows popped and gas sprayed everywhere. “They woke me up by screaming,” she says. “I crawled out a window.”
Burned over 70 percent of her body, she remembers nothing of the helicopter flight to Brigham and Women’s Hospital. Or of the pain and terror that doctors could control only by keeping her heavily sedated in a semi-sleep state for two months. Or of the surgeries every few days to strip away burned skin and cover her wounds with grafts and artificial skin. Or of the six weeks she stayed at Braintree Hospital to work with its burn rehabilitation team.
Today, she looks good – pretty, in fact. She wears a wig to hide the burns on her scalp and a full-body custom-made pressure garment – under her clothes – to keep scarring and itching to a minimum as she heals. She still faces two more years of reconstructive surgery.
Yet she feels her trauma “has made me amazingly strong.” In fact, she wants to go to medical school and become a burn surgeon.
“There’s a million tragedies in the world,” she says with conviction, “and only two ways to handle them: ‘Oh, woe is me, how can I have such bad luck!’ Or to be empowered.”
Empowering people like Whiles who in years past might have died from their injuries is now the cutting edge in burn care.
A half-century ago, in the Coconut Grove fire that killed 492 people, only one man survived with burns over 20 percent of his body, notes Dr. Colleen Ryan, a burn surgeon at Massachusetts General Hospital and the Shriners Burns Institute.
By the 1970s, doctors were saving half of patients with 30 percent burns, according to national figures. Today, half of all people burned over 70 percent of the body survive. And in burn centers, the survival rate, regardless of the depth or percent of body surface area burned, is as high as 94 percent.
The other good news is that fewer people – 1.25 million a year, down from 2 million annually two decades ago – are getting burned these days, thanks to smoke detectors, nonflammable clothing and better occupational safety standards, says Peter A. Brigham, president of the Burn Foundation in Philadelphia.
But along with the remarkable medical progress – much of it attributable to more aggressive surgery to remove burned skin, better skin grafting and earlier use of ventilators to protect damaged lungs – has come a huge, unexpected challenge: How to heal devastated psyches that are often as seared as the skin.
“People who would have died 10 years ago are now being saved,” says Marion Doctor, a clinical social worker at Children’s Hospital in Denver. This means burn teams now have the moral responsibility “not just to save their lives but to offer assistance in getting on with their lives.”
In the past, says Dr. Bob Demling, director of the Brigham and Women’s burn center, “our ability to save lives has exceeded our ability to return to society these individuals as functional, confident human beings.”
But increasingly, mental health specialists are finding ways to help people put their souls back together as their bodies heal, a process that, Demling says, has “very predictable phases, including denial, dependence and hostility.”
Some of the steps in this process are specific to people with disfiguring injuries, burn researchers find, but some are applicable to anyone with a major trauma, whether it’s visible to the world or not.
Dr. Patricia N. Watkins, a psychiatric consultant to the Columbia Augusta Medical Center in Georgia, has identified seven stages that burn patients go through, sometimes over and over.
The first is the “Will I live?” question. It hits people as soon as they become conscious of their injuries. While family members may quickly grasp that an injury is survivable, it often takes longer for the badly burned patient to believe that’s possible.
The next hurdle is believing pain will be controlled. Burn treatment often involves daily cleaning of raw wounds to prevent infection, a process that can be so painful that patients can get trapped in a vicious cycle of pain and fear.
“Anxiety drops dramatically” with good pain medication and psychological support, says Demling, at Brigham and Women’s. The key, he adds, is for burn teams to “break through that barrier of insecurity and anxiety and free up the ability of the patient to actively participate in rehabilitation.”
The challenge then becomes to find meaning in the tragedy.
Curiously, guilt, or at least taking responsibility if the accident was in some way caused by the patient, can help, says Watkins. In fact, the people who often have the toughest time making sense of their trauma are those who were simply victims of bad luck, being in the wrong place at the wrong time.
And while many people suffer because they think their injury must be punishment for some wrongdoing, says Watkins, people also get burned for doing something right – like saving the lives of others – and they, too, may have trouble making sense of it all.
Watkins recalls one woman who was burned over 20 percent of her body when she went into a burning building to try to rescue her father, after she had rescued her kids. “She was sitting there crying, saying, ‘What did I do wrong that I got hurt and he died?’ “
Finding an emotionally comprehensible explanation for the burn is crucial, Watkins adds. Without it, a person may develop post traumatic stress disorder, the way combat veterans and rape victims sometimes do. With an explanation that helps them come to terms with their injury, people are freer to participate in and take pride in their own rehabilitation, even simple accomplishments like enduring the pain of taking a shower.
With each step forward, though, comes a more realistic recognition of the losses, even with burns that are not normally visible to others, says David Chedekel, a psychologist at the Shriners Institute. In fact, recent research suggests that burns “that are not visible can cause as much distress as others,” he says.
Dealing with these losses – including the death of other people in the same accident – can often be accomplished by letting people talk and byproviding a safe place “to express the pain, the anger, the fear,” says James Beauregard, a clinical neuropsychologist at Braintree Hospital, which has one of the nation’s leading burn rehabilition programs.
Because severely burned people may go through dozens of surgeries to close wounds and reconstruct damaged tissue, psychological healing is often a two-steps-forward-one-step-back process as the medical interventions continue.
“Just getting through all the surgeries requires an immense amount of fortitute,” says Demling. “You have to want to get better at the price of looking worse temporarily. That is a real challenge, both physically and psychologically.”
The final emotional step is often the question of identity: Can I be the same person as before? This can be a tough one, especially for young people whose scars are impossible to hide.
But a number of things can help. For Heather Whiles, it was the gift of friendship from Jessica Cirrone, a 23-year old Framingham woman who is also recovering from a bad burn. Both women say that talking together, as well as visiting patients at earlier steps in the recovery process, has been very helpful.
Mental health specialists are also finding ways to help people with bad burns ease back into society. With small children, for instance, some burn centers send teams to their schools to prepare classmates for the return of the burned child.
Others gain confidence in camps for burned children, like those started by Marion Doctor in Colorado in the 1980s.
But whether you’re 8 or 80, re-entry is never easy in a society that puts great emphasis on looks. “One day you don’t have burns, the next day, you do, and you are scarred and disfigured,” says Doctor. “You have to adjust to the non-burned world.”
The miracle is that so many people do. Burn surgeon Ryan has watched in awe as former patients “go back to work and life. People have an innate courage in facing this adversity. It does come out in some people. They do remarkably well.”
“Nobody really knows how the mind works with tragedy,” adds Demling, the Brigham surgeon. “But it is clear that psychological trauma must be treated as aggressively as bodily injury, and with the same level of sophistication. You must deal with both.”
Heather Whiles, he says, has been “very motivated. But if we hadn’t paid attention to the psychiatric impact of this burn, she would have had a harder time getting to the positive point where she is. You see Heather and you see the work of a lot of professionals to bring the true Heather out.”
Whiles herself credits the nurses and other burn team members who have helped her, but also says that ultimately, recovery “is completely internal. You have to reach down and pull yourself up by your bootstraps.”
And she is convinced she will. “Some people talk about how cruel people are to you. But I think you only open yourself up to as much cruelty as you accept.
“I have shown people my back, my head, my hands. Human nature is wonderfully compassionate, but you have to give people a chance.”