By Shirley Vanderbilt
Originally published in Massage & Bodywork magazine, August/September 2005.
At the age of 15 months, Jennifer Hartley was scalded by hot water, receiving third degree burns over the lower 56 percent of her body. “My mother was 17 years old and was giving me a bath in the kitchen sink when she momentarily stepped out of the room,” Hartley says. “In that brief moment of time, I turned on the hot water.” Within seconds the damage was done.
“Doctors feared I would not last through the night and then, that I would be wheelchair bound for the rest of my life,” she says. “I proved them wrong on both.” After 32 years of skin grafts and surgical releases, Hartley is going strong. When she’s not in the hospital bed, she’s beside it giving comforting massage to other burn patients. As a certified massage therapist, Hartley also maintains a private practice at Hand Over Stress in Augusta, Ga., and assists in classes at the Augusta School of Massage. Her remarkable journey from burn survivor to healer is one of determination, courage, and a strong desire to give back, in honor of those who supported her along the way.
There were dark periods of time, she admits. “Sometimes you think it’s not worth it to go on.” Adjusting to the constant round of grafts and medical procedures, as well as the stares and comments in public is difficult, especially for a child. Hartley was a frequent patient at Shriners Hospital for Children in Galveston, Texas, often making the trip without her family because of their work schedule. But with the help of her supportive parents and Shriners’ psychologist Patricia Blakeney, Ph.D. (who served as both therapist and surrogate mom on these visits), Hartley’s strong inner resilience came through. “My mom said, ‘I let you face the world head-on because I knew one day I wouldn’t be here.’”
It was a bad cut across a contracture a few years ago that led Hartley to the Joseph M. Still Burn Center at Doctors Hospital in Augusta, one of the world’s leading burn treatment facilities. Despite her lack of medical coverage, she was offered services and the damage was repaired. “That tugged on my heart strings even more. I told Mom I’m going to work somehow for a burn center.”
Inspired to find a career in the medical field, Hartley says, “I wanted to help other burn survivors without causing pain and fear. I felt that massage was the answer.” With a full scholarship from Flicker of Hope Foundation, a nonprofit that provides emotional and practical support to burn survivors, she pursued her dream at Augusta School of Massage. While she continues to be a Still burn center patient for ongoing grafts, she also provides massage to other survivors referred by the center’s surgeons.
Massage has many benefits for burn recovery, Hartley says, such as reducing anxiety, increasing blood flow, reducing edema caused by damage to the lymphatic system, and in some cases returning feeling to areas that were lacking in sensation. “However,” she says, “the most important result of burn scar massage — in my opinion, not only as a therapist but as a burn survivor myself — is simply the reintegration of touch into the lives of people who now shun human contact. It’s the one thing we long for, but it’s the one thing we fear the most.”
Fear of Touch
Fear of touch develops not just in reaction to the initial trauma, but is compounded over time as the burn survivor endures continual painful surgeries and procedures. Any form of touch is often accompanied by pain, Hartley says, even when applied in the most gentle manner.
“When you have open wounds and burned tissue, and you’re in the hospital for months at a time, that fear becomes such a strong part of your life that when someone outside of the medical profession, even a family member, tries to touch you, you’re afraid — no matter what the intentions are.” Knowing that fear personally, when Hartley begins work on a burn survivor who has never had a massage before, she starts with the assurance that the experience will be relatively pain free. And she’s telling them from a survivor’s point of view.
To the burn survivor, touch can be construed as an invasion of personal space. “They’re more fearful of having their body touched,” says Blakeney from Shriners. “It’s not a matter of modesty. It’s at the core of their identity. It’s almost as if they are their skin. You have to acknowledge that and accept whatever reaction they have — be reassuring and know that no matter how difficult this experience is for you, it’s more difficult for them.”
Many burn survivors feel like societal outcasts, Hartley says, whether the scars are visible or not. The change in their physical appearance affects not only their own self image, but how they are viewed by others. Blakeney points out that people who aren’t accustomed to how burn scars look and feel often have a bad reaction. “That leads to true rejection, not just feared rejection.” She’s had more than one client who has hidden burn scars while becoming involved in a romantic relationship. When the partner eventually sees the scars and withdraws from the relationship, “That’s confirmation,” she says.
Whole Body Effects
Studies at the Touch Research Institute (TRI) in Miami, Fla., have shown that massage therapy provides multiple benefits in burn recovery, from decreasing anxiety and depression to soothing postburn itching and pain (see Resources for more information). Anxiety is a major factor for survivors, whether they’re facing debridement of damaged tissue in the acute phase of treatment or skin grafting years later for hypertrophic scars. Extremely painful, debridement sometimes requires massive amounts of drugs for the patient to tolerate the procedure, Hartley says. “Pre- and post-debridement massage helps alleviate at least half that anxiety.”
Hartley, whose hypertrophic scars on both legs, buttocks, and stomach have necessitated a lifetime of grafts, says she still experiences presurgical anxiety, complete with increased heart rate and hyperventilation. “You awaken to massive amounts of pain. When you’re put to sleep, you don’t know what you’re going to wake up to, or if you won’t wake up at all.” Massage provides her with relaxation and calming, decreasing the need for expensive medications. “If you can have someone there to do something alternative, if it can cut out the need for one drug injected into the body or added to the medical bill, that’s winning a small battle.”
Massage also reduces edema caused by damage to the lymphatic system. “Scar tissue runs 85 percent under the skin, so it damages the circulatory and lymph systems and can cause patches of restriction,” Hartley says. Enabling the system to have more flow can reduce swelling. Depending on the location of scars, there can also be pressure on blood vessels. For example, on the chest area, scars can put pressure on heart and lungs. Releasing that constricted area will increase flow. “If you can massage and do the same thing and not have to be cut open, I’m all for it,” Hartley says.
As scars go through the healing process, itching is a common occurrence. “You can scratch a mosquito bite, but you can’t scratch a scar area,” Hartley quips. Instead, she uses massage to increase the blood flow, which also enhances healing. “To me, the slower the blood flow to that area, the more it itches as it heals. When blood flow is more normal, histamines don’t have a chance to accumulate in that area.” This was also a significant finding in a TRI study published in 2000 (Field et al.). One physician on the study team now teaches his burn center patients self-massage for the relief of itching and numbing or tingling sensations. In some cases, Hartley says, the effect of massage on sensory neurons can return feeling to areas lacking sensation.
In the initial stages of burn treatment, energy work is certainly appropriate, Hartley says. “If there’s any area of good skin not affected by the burn, you can work gently on those areas.” Many systems of the body can be damaged, depending on the depth of the burn, and restoring equilibrium can be enhanced by a variety of approaches. “As long as there’s no discomfort for the client, you can work on any area not affected by the burn.” However, it generally takes between one to two years for burns to heal completely. Prior to that, the scar tissue is still in a dynamic state. Once healing is complete, deeper work such as myofascial can be used on scar areas.
Hartley credits much of the success of her work to methods she learned from experts in the bodywork field, namely George Kousaleous, David Kent, and James Waslaski. “I adapted techniques from each modality to help formulate my own style that I use on burn survivors.”
Interestingly, Hartley’s myofascial training with Kousaleous, founder of the CORE Institute, began with his description of working on a burn survivor. Hartley’s firsthand experience of this work convinced her of its benefits. “If you can release those restrictions in the fascia, you can increase range of motion,” she says. “When I have a good myofascial, it also increases my lymphatic flow and reduces swelling. It brought feeling back to an area of my leg where I couldn’t remember ever having feeling.”
Hartley has found that when working on clients with the same problem, if there is an ongoing restriction in fascia that has never been dealt with, just applying pressure can enable a release which in turn releases trapped nerve endings. Problems with blood flow not only cause numbness, but can also cause a discoloration of the skin, with burn survivors sometimes looking like “Picasso body art,” she says. When myofascial massage increases blood flow, it facilitates a more uniform color to the area, as it has done for her legs.
From David Kent came neuromuscular and trigger point therapy. “I don’t go through any sessions without using it,” she says. “There are so many areas in scar tissue where there’s a lack of blood flow and it creates trigger points. The doctor will say it’s your scars, but a lot of times its just a restriction. Some restrictions go deep into the scar. The deeper it goes down, the more restriction it can cause. It affects not only skin and pain receptors located in the skin, but also the lymphatic system and venous systems. Restrictions in the lymph system will cause edema and swelling in the area.”
For burn survivors, swelling is a major problem. A person with normal skin elasticity may experience some discomfort with swelling, but for burn survivors, scar tissue without elasticity doesn’t stretch. The skin tries to expand, but can’t, causing intense pain and impeding movement. It can also cause scar tissue to tear, opening the door for infection and more surgery.
“When I do not make time in my schedule for my own massages, I see increased swelling and discoloration in my legs,” Hartley says. “In these instances, instead of using proper body mechanics to massage, I have to improvise and sit on a stool. This causes bad body mechanics and instead of using my body for pressure, I am then relying on using strictly my muscles and thus not getting maximum pressure.”
Until she trained with Waslaski, Hartley says she underestimated the benefits of stretching for burn survivors. Waslaski’s pain free approach uses trigger point, neuromuscular, and myofascial work along with active isolated stretching. “When he taught passive and active stretching, a classmate worked on me and it helped a great deal,” she says. In recovery from recent surgery, Hartley had been guarding the surgical site by overcompensating with muscles in other areas. Although it was helping her through the healing process, she had developed addition pain from the overused muscles.
“When you work on burn scars, you have to think outside the box,” Hartley says. “The fascia no longer runs along the Langer’s lines. You have miles of scar tissue running in different directions. Scar tissue no longer contains collagen that enables it to stretch. When the fibroblasts lay down to try and correct the problem, the lines are distorted. Therefore, to effectively massage the damaged tissue, you have to examine which way the scar runs and follow the flow.” When you’ve identified the flow, you can then apply massage to the constrictions to increase elasticity and range of motion.
Working with Burn Survivors
The emotional trauma associated with burn treatment can have a lasting influence, as it has for Hartley, creating fear and anxiety around continued procedures. For a small minority of survivors, it may lead to posttraumatic stress disorder (PTSD). As former director of psychology and psychiatry at Galveston’s Shriners Hospital, Blakeney has worked with burn survivors since the 1970s. Now semi-retired, she keeps a hand in the work as Shriners’ senior psychologist and surgical department professor. “My suspicion is that in the early days we produced a far greater percentage of PTSD from treatment. The treatment is so painful. There were fewer ways of dealing with pain and doctors were more reluctant to give pain medicine, especially to children.”
Blakeney’s career with burns initially began when she offered hypnosis to adults undergoing debridement in the tub room. Past treatment methods included serial surgeries, with these daily sessions in between. Some adult patients would call her months later because of a full blown anxiety attack when something triggered their memories and reenacted the trauma.
“Two major things have changed,” Blakeney says. “There are far more options, and we know a lot more about pain and managing pain, especially in children. Also, surgeons almost always do surgery immediately, removing as much dead skin as they can.” Grafting the whole body reduces the rate of infection, and “it’s far more comfortable to have those open areas covered permanently than the old way to let burn areas declare themselves, then remove dead skin, and then go in and graft. Nonetheless, it’s still not pleasant today.” Although improved, the treatment is painful and some patients will reexperience the trauma even after healing takes place.
This is an important aspect for massage therapists to understand, considering the potential of massage to bring about emotional release. As with all traumatic release, if in doubt, refer out to a professional counselor or psychologist.
“I learned a lot about emotional release when I started school,” Hartley says. Unaccustomed to having her scars touched, she wasn’t keen on the idea. “I thought, if I am this well adjusted but someone touching me brings up feelings, then how can I convince others it’s OK. It taught me fear can be overcome if you trust yourself to the hands of the person working on you and their intentions.”
Validating the client’s experience can ease some of the awkwardness for the survivor. Blakeney says it will likely be up to the therapist to initiate talking about the scars because the client might not bring it up. “I am so desensitized to burn scars and disfigurement that I have to make myself aware of it,” she says. “I have to remind myself it’s important to acknowledge this — it’s a big deal. Even if you are a therapist like Jen, who is so accustomed to seeing them, you have to bring up the topic and say I know this is a big deal.”
Once the subject has been addressed, there are ways the therapist can support and enhance the client’s sense of well-being and self-esteem. “It’s helpful for therapists to get in the habit of using positive imagery, to think of positive ways to describe what they’re feeling with their fingertips so those images can replace some of the images burn survivors have of their body,” Blakeney says. In the trance-like, relaxing state of massage, the client is amenable to suggestion and the words the therapist uses are likely to have impact.
Tyler’s Success Story
Tyler Hitt has been a patient at the Still center for several years. He has third degree burns over 50 percent of his body, on his leg, chest, arm, and face. “Half is a graft and the other half we use to graft from,” his mother, Shawna Hitt says. When Hartley first offered to massage Tyler, his mother questioned its importance. “But it turns out that it really brought him around to getting to know himself better,” Hitt says. “Adjusting to new scars can be heartbreaking. It really helped him to say OK, it’s me, this is my body.”
The Hitt family traveled frequently from their home in South Carolina to Augusta where they met Hartley while she was serving as “house mom” at the burn unit’s housing retreat for out-of-town families. Hartley and Tyler clicked right off the bat, Hitt says, and developed a close relationship. Now 11, Tyler is a big fan of massage. But a few years ago it was a different story.
“He didn’t want to be touched,” Hitt says. Physical therapy sessions were cut short because of his resistance and just the thought of the rubbing lotion elicited tears. Tyler associated the burn unit with pain and was fearful of anything related to his treatment. “It was hard to get him to touch himself and his scars,” Hitt says, “because of his fear of what it was going to feel like.”
Hartley’s patience and caring approach won out. The fact that she was also scarred and understood his plight had a positive impact, too. Tyler eventually allowed her to rub his foot and his head. As he became more comfortable, she was able to expand the touch. At one point, when his back was hurting and he was frightened, he allowed Hartley to put her hand on his stomach. “I knew for him that was a big step,” Hartley says. Now Tyler asks for whole body massages. “Two months ago he had tissue expanders put in his back. He asked for massage. It was a triumph for him to trust me to make him feel better.” And it was a door opener for the family, Hitt says. Tyler’s back rubs have become a routine at home. “Now we use massage for everything — to get him to do things.”
Hitt also credits Hartley’s work for the change in Tyler’s self-esteem. “Before she started working with him, he didn’t feel good about himself. He felt scarred and ugly. Now he fixes his hair and styles it. He primps. He’s even gotten to a point where he thinks some of his scars are cool.” When asked about massage, Tyler had only one comment: “It feels real good.”
Surviving and Thriving
Years ago, severely burned patients had little chance of survival. With the improvement of treatment over the past few decades, today they do. The Still burn center reports a patient survival rate of 96 percent. But the survivors face many challenges, both physically and emotionally. Support systems and peer support groups are key to facilitating the survivor’s adjustment and integration back into “normal” life.
In addition to national organizations, such as the Phoenix Society for Burn Survivors, there are burn camps for children and peer group gatherings. The Still burn center joins hands with the Southeastern Firefighters’ Burn Foundation to host a reunion of burn patients every two years. For this year’s event, Hartley was invited to give a speech on the benefits of massage therapy for burn scars and to organize a massage clinic for survivors and their families. Her associates and students joined in, volunteering their time and hands for the event. “This gives the burn survivors firsthand knowledge of massage therapy and enables them to experience, at least once, the benefits both physically and emotionally that can be derived from massage,” she says.
Hartley’s fellow volunteers from the Augusta School of Massage are well prepared for their work. Hartley assists with the students on clinic days, giving them a chance to experience the actual work on her own scars. Using her sense of humor to put them at ease, she’s quick with the jokes about her condition. Once the ice is broken, students are more relaxed in her presence. Working on burn scars for the first time can be intimidating, but by the second or third session, she says, many students have lost their fear, becoming enthusiastic about the work and adding their bit to the toolbox of tricks. She also teaches them about types of scars during myofascial classes. Eventually, the school may offer burn scar massage as a separate class.
Therapists interested in burn scar massage should first visit a burn center, Hartley says, to see the reality of the survivor’s experience. In addition, she recommends reviewing the TRI research and other related publications. Another option for well-trained therapists is to collaborate with a local burn surgeon or burn unit for client referrals.
Hartley’s vision for her future includes training therapists to work in burn centers across the country. “I believe massage can fit into a supporting role,” she says, “along with the doctors, nurses, and psychologists. It’s a group effort.” Wherever her journey takes her from here, there’s one thing for sure. On the small of her back, Hartley proudly sports a cross-shaped tattoo that says it all — “Survivor.”
Jennifer Hartley can be reached at firstname.lastname@example.org.
--American Burn Association, www.ameriburn.org.
--Blakeney, Patricia, Ph.D. and Creson, Daniel, M.D., Ph.D. “Psychological and Physical Trauma: Treating the Whole Person,” http://maic.jmu.edu/JOURNAL/6.3/focus/blakeneyCreson/blakeneyCreson.htm.
--Phoenix Society for Burn Survivors, www.phoenix-society.org.
--Shriners Hospitals for Children, www.shrinershq.org.
--Touch Research Institute, www.miami.edu/touch-research.
--Vanderbilt, Shirley. Rising from the Ashes: Easing the Healing Path for Burn Patients. Massage & Bodywork 2002 December/January 118-120.