A tug of war
Like many burn patients, Zhang initially thought that she would quickly be able to return to life as it had been once her wounds had healed and she had been released from the hospital. She was quite wrong about that.
Tu Yu-hsien, an occupational therapist who is director of the Sunshine Rehabilitation Center, says that the time required for rehabilitation varies according to the severity of each patient's wounds and physical condition. Among those who have been treated at the center with moderate to severe wounds, the average time of rehabilitation is 9.7 months. But it can extend to three years.
Tu explains that second-degree burns (when there is damage to the deep layers of the dermis) and third-degree burns (when there is damage to subcutaneous tissue) result in permanent scarring. When these scars are new, they are red and bumpy and feel hard and inflexible.
In comparison to normal skin, scar tissue has more collagen fiber, which can clump together to form myofibroblasts, which are cells that promote shrinkage in connective tissue.
Contraction is characteristic of the scar formation period. The skin over patients' joints pulls taut, which causes pain and irritation. Excessive scar tissue over a joint can limit its range of motion.
Tu stresses that making the most of the golden period of rehabilitation (the first three to six months after wounds begin to heal) is extremely important. When patients are released from the hospital with wounds that are smooth and soft, they often ignorantly delay seeking treatment, and some avoid rehabilitation because they are scared of pain. "But the less they move, the more limited becomes their range of movement-to the point where limbs can even end up becoming deformed. Waiting until that point to pursue rehabilitation or corrective surgery accomplishes half the results with twice the effort.
Pressure garments
Apart from causing patients to endure pain, the rehabilitation process requires pressure therapy. Patients typically wear elastic pressure garments for one to three years.
Tu explains that the principle behind pressure garments is to apply "sustained and uniform" pressure to wounds where the scarring is not mature. That allows the collagen in the fibrous tissue to arrange itself in a more parallel manner, so the scar becomes "smoother, shallower and softer." Wearing pressure garments not only promotes the maturation of scars but also supports rehabilitative efforts aimed at getting patients to recover their range of motion. On the other hand, treating severe burns without pressure therapy often pushes back the time of full healing to four years. What's more, it results in a much more uneven scar surface.
"The golden period of rehabilitation is indeed exhausting, because this is when the scars have not fully healed, and the newly grown scar tissue is very weak. If one isn't careful, the pulling can result in skin breaks or blisters." Tu cites the example of bathing: "The whole process, from removing the pressure garments and the gauze and cleaning the body, to changing the topical medicine and dressing on the wounds, to getting back into the pressure garments, can take as long as three hours. And it puts greater physical and psychological pressure on the caregiver."
Marshalling courage
For many years, Sunshine has maintained close ties to large hospitals and sends staff members to convey their sympathies to burn patients in them. The hospitals also actively provide introductions to Sunshine, facilitating easier access to therapeutic services after release. Sunshine also hires therapists to make visits to the homes of patients who live in remote areas of central and southern Taiwan. Every year its therapists make about 800 home visits. "The hope is that everyone will receive timely and supportive rehabilitation," says Lin Jui-chiao, Sunshine's deputy CEO.
With access to comprehensive and professional therapeutic resources, says Lin, "It's key that patients feel motivated. All professionals can do is to stand alongside and offer a hand." Consequently, burn victims who come to Sunshine are required to participate in eight group-therapy sessions. "After they hear from peers and start encouraging each other, they find the energy to press ahead."
Luo Yiqin, a former patient at Sunshine, recalls that when her situation was no longer critical and she needed to start rehabilitation, she lacked the necessary motivation. She complained to her father, who had been very attentive to her needs: "Why do you want me to live? You never got my permission to save me. Why can't you understand that I'm in so much pain I'd rather die? I don't want to live like this. Everything's totally different!"
Her father replied: "I'm willing to share the pressure and suffering. Seeing you in such pain pains me inside too. Yet we've got to face what has happened. We can't just keep complaining. I believe that you can move beyond this!"
Zhang Zhengyu notes that during her own rehabilitation she grew so melancholic she was near the point of clinical depression. "I'd follow my therapists' instructions, suffering the pain. With great difficulty I'd do some stretches, and then 10 minutes later the scars would be just as tight as ever!" Even her husband couldn't help but nag: "Have you been slack about your stretching routine? How is it that you're not making any progress?" Such comments left her speechless.
She would frequently get halfway through her routine and then burst into tears. Partly it was a result of the pain, and partly it was because she had always been so strong minded and independent that she found it hard to accept that she had to "rely on others just to change my clothes or pick something up." She worried that she would never get better.
Fortunately, experienced patients at the center encouraged her, and Sunshine staff spoke earnestly with her husband. Those efforts dispelled misunderstandings and reduced the psychological pressure, and she pulled out of her funk to untiringly apply herself to rehabilitation.
A friendly environment
As they walk down the long path of rehabilitation and gaze toward their futures, burn victims need more support from society.
Lin Jui-chiao points out that the number of people in Taiwan suffering from extensive burns has been on the decline, which demonstrates that prevention efforts are succeeding. But according to statistics kept by Sunshine about burn cases of medium to high severity, most burn victims (45%) in 2010 suffered their injuries as a result of household accidents (such as explosions caused by gas leaks). These were followed by industrial accidents (30%); accidents in public spaces, including fires ignited by cigarette butts (13%); and burns resulting from violence (12%), including domestic violence. The statistics suggest that a lot of work remains to be done in preventing domestic accidents.
Lin also stresses that burn victims have always been mostly working class, since accidents causing burns are more likely to happen in blue-collar work environments. And because scar tissue doesn't sweat, rehabilitated burn patients are more prone to heat exhaustion. That in turn reduces their already limited job opportunities. These workers often encounter difficulties embarking on new careers.
People with facial scars have to deal with particularly harsh social discrimination. Anyone with a highly visible scar has to endure uncomfortable stares from strangers, but those with facial scars are susceptible to even more bizarre forms of revulsion. Some people may refuse to eat at the same table with them. Parents will use them as negative examples when scolding their children: "If you don't behave, you'll end up looking like him." Or at work they'll be told by coworkers to sit facing the wall. In response, Sunshine is launching a "facial equality" campaign this year, hoping the public will start to treat victims of facial burns fairly and give them the respect they deserve.