Phoenix Education Grant Recipient Pursuing Her Career in Physical Therapy

Rachel Anderson

Focus: Physical Therapy

Rachel’s experience overcoming adversity inspired her to pursue a career helping others do the same.

Rachel Anderson, burn survivor and PEG Scholarship recipient is focused on helping others overcome adversity.

Rachel Anderson, burn survivor and PEG Scholarship recipient is focused on helping others overcome adversity.

She received an educational grant from the Phoenix Society for Burn Survivors. AlloSource pledged an annual contribution to the Phoenix Society for Burn Survivors over 10 years to provide education grants for students like Rachel. She is a freshman at Lebanon Valley College in Annville, Pennsylvania. When she graduates from the rigorous six-year program, she will have a Doctorate in Physical Therapy.

 

This degree will allow me to help those who are going through the same thing I did,” she said. “In my future, I want help kids who need physical therapy. My life goal is to be a role model and show others that nothing can stop you.”

While in high school, Rachel excelled on and off the field. She graduated with a strong academic record and served as the captain of her high school’s lacrosse and cross-country teams.

In addition to being named Most Courageous Athlete and Most Courageous Runner, Rachel made the Athletic Director’s All-Academic Team and All-Scholastic Team.

Rachel also focused much of her energy on community service. She participated in mission trips, volunteered in soup kitchens, and did volunteer work at the Ephrata Community Hospital and Schreiber Pediatric Rehab Center.

My burn injury has shaped me in many ways,” Rachel said. “I believe I am a better person today because of it. This journey has taught me so much. I also believe that I am a more caring person because of my burn injury. So many people helped care for me; I have confidence that it’s my job to do the same.”

Rachel is grateful for the support of her family and friends. She is looking forward to a career that will allow her to provide her own unique perspective to patients going through physical therapy.

Story contributed  with permission by AlloSource, one of the nation’s largest non-profit providers of skin, bone, and soft tissue allografts for use in surgical procedures and the world’s largest processor of cellular bone allografts.  AlloSource has pledged a 10-year gift to support Phoenix Society’s Phoenix Education Grant program for burn survivor students pursuing their post-secondary education.  AlloSource blog: http://www.allograftpossibilities.org

 

Firefighters and Their Families: Making Connections at WBC

As its participants can confirm, the Phoenix Society’s World Burn Congress (WBC) creates a community that nurtures the common bonds among burn survivors. Burn survivors, regardless of their careers or other life circumstances, share similar steps to recovery and universal experiences, such as healing from trauma, grieving, and forgiveness.

The Phoenix Society acknowledges this shared experience among survivors, but also creates space for attendees at WBC to connect with others who share characteristics that are specific to their burn injury. For example, the programming at WBC includes special topic support and discussion forums for such groups as adult burn survivors burned as children, survivors with “hidden” burns, and survivors who experienced electrical injuries.

Partnerships Make it Possible
The Society, through its partnerships with burn foundations, individual members of the fire service, and organizations such as the International Association of Fire Fighters (IAFF) Charitable Foundation Burn Fund, the National Fallen Firefighters Foundation (NFFF), and the University of Kentucky College of Social Work, has also worked to better meet the support needs of another group—burn-injured members of the fire service and their families.

FireFighters Find Forum For healing
The fire service-related sessions at this year’s WBC included a support group for burn-injured firefighters (attended by about 30 firefighters), as well as one for their spouses (attended by about 16 spouses); a discussion group for all firefighters (attended by about 75 firefighters); and an In the Line of Duty panel, featuring Fire Capt. Luis Nevarez,

Luis Nevarez, firefighter and burn survivor, shares his viewpoint as a panelist at WBC.

Luis Nevarez, firefighter and burn survivor, shares his viewpoint as a panelist at WBC.

firefighter Scott Atchison, and firefighter-spouse Amy Adams, which provided insight into the firefighter experience to all attendees. As part of a general session panel, Providence, Rhode Island, Fire Lt. Antiliano Estrella discussed advocacy efforts and fire code policy changes that stemmed from the tragic Station nightclub fire in 2003. Lionel Crowther, a Winnipeg, Manitoba (Canada), firefighter, and his wife Joanna also shared their story in the general session. In 2007, Lionel and another firefighter, were burned while operating at a house fire that also claimed the lives of 2 fire captains. Establishing forums where firefighters and their families can share their experiences, thoughts, and express their feelings has been an important addition to WBC programming. Their impact and benefit can best be described in the words of several participants:

  • Fire Lt. Paul Machado of the Fall River, Massachusetts, Fire Department was burned in March and attended WBC for the first time this year. He wrote, “it was great to meet everyone there and experience the conference. There was an instant connection meeting other firefighter burn survivors—they understand everything that has gone through my head. I was skeptical going in. I think you have to be here to get it—firefighters reaching out to and learning from the burn community. I’m now an advocate and will be sharing this with Brothers and Sisters.”
  • Fire Lt. Joe Kalinowski of the Marshfield, Massachusetts, Fire Department was injured fighting a fire in November 2012. He commented on the bonds that exist among firefighters and, in particular, burn survivors in the fire service, saying, “The [WBC] sessions reinforced the fact that we are a family in our profession throughout North America. Regardless of the severity of our individual injuries or stage of healing, as burn survivors we are a family that is able to support each other and share what we are experiencing or have experienced; unconditionally we have resources available to us.”
  • Firefighter Atchison, also a first-time WBC attendee, who was partnered with Firefighter Crowther that tragic night in 2007, commented, “As part of the In Line of Duty panel, I gave the perspective of a firefighter who survived a tragic incident without burn injuries, as well as insight into the workplace the burn survivor firefighters would potentially be returning to. My wife, Sheri, was also able to attend with help from the Phoenix Society and she attended the spouse support groups that helped her greatly. We were truly and deeply inspired by the survivors, health care providers, and firemen we met.
    “Going into the conference there was a feeling of apprehension as to my place with burn survivors as there are no physical scars on me. When you are a fireman, you can usually identify who has been in serious situations by looking at the gear of fellow firefighters. Some of the experienced guys will wear blackened helmets or gear that displays the wear and toil of prior incidents. My peers at the conference—both firefighter and non-firefighter— wore their blackened helmets everywhere they went in the form of physical scars. These scars gave unspoken stories of survival. After speaking on the panel and in support groups sharing the tragedy we experienced in Winnipeg, we heard the stories of some others. The internal scars, coping mechanisms, and healing processes of the survivors in this group became apparent, affirming the feeling of belonging only a group like this can bring. It helped us greatly. We felt very welcomed into this family of special individuals. Thank you very much to the Phoenix Society for helping us attend and creating such an incredible forum for healing.”

Spouses Bond With others
Who understand Journey Scott’s wife, Sheri, added to his comments from her perspective, saying, “This was my first conference at the Phoenix Society’s World Burn Congress and I have to admit that I wasn’t sure what to expect. For me personally, I didn’t realize that I buried my feelings/stress from the event until I attended a burn injured firefighter spouse support group. This was the first exposure I ever had to feeling like I was “normal”— every spouse feeling the same feelings… I walked away from this event with a new purpose and a new light. There was a real benefit of attending the Phoenix Society’s World Burn Congress this year. The connections that I made felt so genuine, and I know they will carry me through the rough times ahead for me. I wouldn’t have even contemplated starting this emotional recovery journey if I hadn’t attended the firefighter spouse-specific session. Firefighters are a special breed; while everyone else is running away from danger they thrive on running into danger. It is hardwired into them and you can’t change that, so to be able to communicate our fears with other spouses is a release for us.”

Leslie Kalinowski attended WBC for the first time along with her husband, Joe. She shared that “there is strength in bonding with people with similar situations in life—people who can truly understand the journey.” She explained that after attending the conference she has a new sense of “moving on” that she hasn’t had for many months. “It’s a good feeling,” she says. “I had no idea what to expect, but was pleasantly surprised. I went under the premise of being there to support Joe. I had no idea that I would take so much out of it for myself….I feel I have new resources in my journey as a spouse of an injured firefighter.”

Jeannine Barrera, wife of retired Stockton, California, Fire Capt. Oscar Barrera initially faced her husband’s injury in 1997 without this type of support. Oscar was injured when responding to a house fire during which the second floor collapsed, killing two of his fellow firefighters. Jeannine has since become a Phoenix Society SOAR (Survivors Offering

Phil Tammaro at In the Line of Duty, one of several programs at WBC focusing on the experiences of firefighter-survivors.

Phil Tammaro at In the Line of Duty, one of several programs at WBC focusing on the experiences of firefighter-survivors.

Assistance in Recovery) peer supporter and a regular participant in WBC and the burn-injured firefighter spouse support group. She shares that when she was finally able to speak to other wives of burn-injured firefighters, she felt as if she had “finally found a home.”

“Before that,” she says, “I felt like I was just floating through the [WBC] conference since nothing really connected to what I went through. Yes, we all had a burn survivor connection but no one quite had the experience I had. It’s unfortunate that our support group probably will grow because that means more firefighters will be injured, but I am grateful to the Phoenix Society for understanding that there is a much needed place in their conference for the burn-injured spouse support/discussion group.”

Libby Feyh and her husband, Sacramento, California, Fire Capt. Mike Feyh, who was burned in 2010 during a house explosion that was determined to be the result of arson, have been involved since the inception of the fire service-specific support groups. Libby, who now serves as co-facilitator of the spouse support group, shares her perspective about the necessity of having these specialized offerings at WBC and their involvement in the Phoenix Society’s SOAR program, saying: “Mike and I both went through SOAR peer supporter training a few years ago at World Burn Congress and we are proud to be part of something so important to so many. Beyond the SOAR curriculum, though, we learned that being a burn-injured firefighter, or spouse of a burn-injured firefighter, meant we had a different perspective on many things than our civilian SOAR counterparts.” For one thing, she explains, the incident surrounding a firefighter’s injury is often a media event. Additionally, the firefighter-survivor hopes for nothing more than to be able to remain in the profession that put him or her in the position of being burned.

“This creates different dynamics in the recovery process for us,” says Libby. She adds that there are many other more subtle, but nonetheless significant, distinctions that also make the experience of the firefighter-survivors and their families unique.

Libby credits the addition of dedicated fire service sessions, including the fire service-specific discussion
groups, as being very helpful. There, she says, the couple could freely express their doubts, concerns, anxieties, and triumphs and know that others in the room would understand because they were walking the same road.

“This support meant a lot to us during Mike’s recovery and all through the subsequent arson-related trial and the continued glare of the media spotlight,” explains Libby. “The fact that attendance in these groups
has essentially doubled each year since they have been offered is testament to their power and the need for them.”

FireFighter-Specific Component of WBC to Continue to Provide Support
WBC programming includes sessions that connect attendees through shared experiences and characteristics—and those addressing the needs of the fire service are now among them thanks to the efforts and participation of many. Fire Capt. Nevarez, who lost his hand and forearm after contacting a 12,000-volt power line while on a call, credits the fire service involvement in WBC with giving many firefighters “direction and the guidance to many other resources.” We hope that others in need of support will join us next year at the Phoenix Society’s 2014 World Burn Congress, October 22-25, in Anaheim, California.

Karen Badger, PhD, MSW, is an associate dean and associate professor at the College of Social Work, University of Kentucky. Phil Tammaro, FF-EMT is a professional firefighter in Billerica, Massachusetts, and 3rd district burn coordinator for the IAFF Charitable Foundation Burn Fund.

Special thanks to all those firefighters and their spouses who contributed their reflections.

Getting Through the Fire: One Couple’s Guidebook for “Surviving Survival”

By Kathy Edwards, PhD

Lionel and Joanna Crowther share their story together as keynote speakers at WBC 2013

Lionel and Joanna Crowther share their story together as keynote speakers at WBC 2013

Feb. 4, 2007, is the day that changed the lives of Lionel and Joanna Crowther forever. A firefighter with the Winnipeg, Manitoba, Fire Department, Lionel was off duty that night when he got called in for an overtime shift to fight a house fire.

What was reported to be a routine attached-garage fire, proved to be anything but. Within minutes after responding to the call, a flashover occurred. Flames engulfed the entire house, trapping several firefighters on the second floor. Somehow Lionel managed to escape by jumping out of a second-story window.

When the smoke cleared and the flames were extinguished, two fire captains had been killed and four firefighters, including Lionel, were severely injured.

Amidst the smoke and flames, Lionel saw members of his crew performing CPR to try and save their captains. Others braved the flames to gather up Lionel and carry him to the ambulance, which then rushed him to the hospital.

“It was very powerful for me to think about what these guys were willing to do to save us,” Lionel remembers.

That Fateful Knock

Joanna Crowther will never forget hearing the knock at the door that every firefighter’s wife dreads. “Even in the midst of his injury, Lionel was taking care of me,” recalls Joanna, “He asked another firefighter to call my mom so she would be the one to come to the house to tell me the news,” she explained. Another firefighter called Joanna’s brother so that she wouldn’t have to drive to the hospital by herself while her mother stayed with the couple’s two children.

Joanna had never seen a burn injury before that night and she didn’t know what to expect when she saw her husband. Lionel’s first words when he saw her caught her off guard. “We should have another baby,” he said.

“I realized, in hindsight, that they had put him on some pretty good drugs,” Joanna says with a laugh. Although she was overcome with emotion in that dark moment, Lionel’s crazy remark gave her hope.

Joanna then faced the difficult challenge of telling her young sons, ages 2 and 4, what had happened to their father. How could she answer their questions when she had so many herself?

On the morning after Lionel’s injury she told the two boys, “Daddy hurt his hands at work.” But that didn’t satisfy their curiosity; they wanted to know why he couldn’t come home.

“Daddy got to ride in an ambulance and go through red lights,” she went on to explain, “without getting a ticket like Mommy did.” The memory brings both a smile and a tear as she remembers the things she did to cope in that impossible situation.

When Lionel woke up in the hospital he had lots of questions too. He learned about his third-degree burns, and that he would need skin grafts. Doctors told him it would be a lengthy recovery, but nothing in his training in the fire service prepared him for what was to follow.

“I started my fire career 16 years ago. At that time all I saw was the glory, the gear, the life of the fire hall,” remembers Lionel. In his firefighter training there was a guidebook for almost everything. After he experienced his burn injury, Lionel and Joanne were challenged by the fact that there was no guidebook on how to recover from a life-altering burn injury.

The Hospital Meets the Fire Service

Joanna’s initial response to Lionel’s injury was shock. “We didn’t think this could happen to us,” she says. “Sometimes we wondered why it happened. How could it happen in our city, to our fire department?”

While Lionel suffered from the pain of his injuries, he also had doubts about his future. His hands and fingers were severely burned and he wondered if he would ever regain their use. He wondered what the boys would think when they saw him like this. Would they recognize him or would they be afraid of him? Would he ever be able to return to work as a firefighter?

Another unexpected dimension of the hospital stay was the media attention and the stream of visitors from the fire service. Lionel and Joanna were surrounded by other firefighters and their families while they were in the hospital. Sometimes their presence was healing and sometimes it was hard, especially for Joanna.

“At first I was hurt because I thought he needed them more than he needed me,” Joanna explains “but I could see the healing that occurred when he talked to his brothers in the fire service, and so I accepted it.”

Joanna recalls that at one point the hospital psychologist wanted to ask the firefighters to stop visiting so she could work with Lionel. But Joanna realized that the best form of support for her husband was to talk to other firefighters so she allowed the visits to continue.

Eventually the hospital set aside a separate room for the fire service visits, which were often very emotional. The meeting place at the hospital became a place of healing for other firefighters and their families.

“Our department had never experienced serious injuries and death to fellow firefighters,” says Lionel. “It was new to everyone. It would have been a tremendous help to be able to talk to others who had gone through it.”

Lionel was particularly distraught that he was still in the hospital when the funerals for Capt. Harold Lessard and Capt. Thomas Nichols were held, making it impossible for him to personally attend and pay his respects. However, Joanna not only went to the funerals but played a song, at Lionel’s request, to help him say “thank you” and honor their sacrifice. “I know it was extremely hard for her and I was very moved that she was willing to do that for me,” Lionel explains.

Among the many other emotional challenges Lionel faced was the struggle with survivor’s guilt–the guilt he felt for not being able to save a fellow firefighter. He found that he needed professional help to learn to cope with his feelings.

“I had days where all I thought about was what I had lost,” Lionel said. “I needed to refocus and think about what I still have. That took some time.”

Home From the Hospital

It was challenging for Joanna to both manage the boys at home and be with Lionel in the hospital, but fortunately she had help from family and friends. Then only 17 days after he was admitted, considerably sooner than the 2 months doctors had originally predicted, Lionel was released from the hospital. The couple was excited that Lionel was going home, but they weren’t prepared for what was to come.

“I went from having an entire team to care for my wounds and dressing changes and take care of every need, to having only Joanna to do all those things for me,” recalls Lionel.

It was challenging for Joanna to take care of not only her two boys, but also her husband. She felt she had to manage all of it by herself. “She was no longer my wife,” Lionel recalls. “she was my caregiver. It changed our relationship.”

Being back in his home environment also reminded Lionel of all the ways his life was not normal. He had always been a very independent person and now others had to do everything for him.

One of the hardest things was watching his brother-in-law play and wrestle with his sons because he couldn’t. “I love being a dad.” Lionel said. “My biggest fear was that I would lose my boys. They were my sidekicks. We went everywhere together.” His limitations only made him more determined to work hard during therapy so he could reclaim his life.

From Wife to Caregiver – Finding the Way Back

The stress took a toll on both Lionel and Joanna. He recalls his frustration one night when he was waiting for Joanna to put cream on his burns and put his pressure garments on him so he could go to bed. As he wondered what was taking her so long, he realized that she was still busy getting the boys ready for bed. It was then he decided it was time to start doing things himself.

Lionel remembers some of his initial successes, like the first time after the accident that he was able to brush his teeth on his own. After more of those little accomplishments, he started to feel like himself again. He reached the point in his recovery where the physical challenges got much easier to overcome. But as those things got easier for Lionel, it only underscored the fact that healing physically was easy when compared to recovering psychologically .

“I didn’t see it at the time, but my wife was exhausted,” Lionel recalls. “We were on two different healing paths,” Joanna explains. “We thought once the burns healed, life would go back to normal. But then we found that it didn’t. We had to refocus and start taking care of each other.”

“We didn’t want this event to define the rest of our lives,” Lionel adds. “We had to make a choice. Were we going to allow the tragedy to destroy our family, or would we learn from tragedy and move on? We had to make a choice and we chose family.”

Surviving Survival

Fortunately the Crowthers sought professional help. They saw a psychologist who specialized in helping people work through trauma. For a while things got so difficult that they thought about splitting up. But the psychologist taught them how to think about what the other person needed. He helped them understand the other person’s healing path.

One day the psychologist told Joanna, “You and Lionel survived that fire, but now you have to do something even harder, and that is surviving survival.”

Lionel and Joanna came to see that they were trying to act like everything was normal in a situation that was abnormal. They had to learn to redefine the roles in their relationship and learn to accept the “new normal” that comes from life after a burn injury.

For Lionel that meant going back to work as a firefighter. “It was exciting for me,” he says, “but I was only thinking about myself. I wasn’t thinking about Joanna.”

It was much harder for Joanna and the boys. Both parents had a hard time deciding how much to share with their young sons.

“It’s difficult to explain to 4-year-old why Daddy is going back to a job where he got hurt–a job that nearly killed him,” Joanna explains.

Returning to Work

Lionel sensed that many of the other firefighters needed him to come back to help with their emotional healing. “My brothers in the fire service helped me ease back to work by being the fifth man on the truck,” he explains. Many of them wanted to see my burns because they were wondering what they would look like if this had happened to them.”

“At first when the fire alarm sounded, I was panicking every time I went out on a call,” says Lionel. “It felt like I was going to the same fire again. I knew I wasn’t completely healed. I was afraid to let other firefighters know I was scared.”

Finding Support, Writing the Guidebook

Lionel and Joanna have found help and inspiration through the Phoenix Society’s World Burn Congress. Just months after his injury, Lionel traveled to Vancouver, British Columbia, to attend his first World Burn Congress (WBC). He thought he was there just to gather information for others back home in Winnipeg. It didn’t take long before Lionel sought out other burn-injured firefighters to ask, “What did you do to recover? What was it like when you went back to work?” After his first WBC experience, Lionel began to talk more openly about his burn injury. He started wearing t-shirts again.

“I felt that I was proud of my scars. I accepted the fact that I survived. I made it,” Lionel proclaims. WBC has become an annual event for the Canadian firefighter who has gone to 6 of the last 7 congresses.

The Crowthers listen as Alex Trevino(r), burn survivor, shares his story at WBC 2013.

The Crowthers listen as Alex Trevino(r), burn survivor, shares his story at WBC 2013.

Joanna, who participated in the 2013 Survivors Offering Assistance in Recovery (SOAR) Firefighter Summit and attended WBC for the first time in October with her husband, realized she was not alone when she heard other spouses talk about how a burn injury affects the entire family.

Since their recovery, Lionel, with Joanna’s support, has concentrated his studies and training on firefighter survival in its many forms. He has become a master instructor with the International Association of Fire Fighters (IAFF) Fire Ground Survival Program, a trainer for the Petzl EXO Escape System, and a SOAR-trained peer supporter with the Phoenix Society.

He now works as the district coordinator for the IAFF 13th District Burn Foundation.

“I brought my two passions together when I became the IAFF Burn Foundation District Coordinator,” says Lionel. In this role, he’s writing the manual he needed and didn’t have when he was burn-injured 6 years ago. “I’m working to help other firefighters and their families so they don’t have to go through what we did all alone,” Lionel explains.

Today Lionel is proud to say he is burn survivor, firefighter, husband, and dad. In 2009 Lionel fulfilled the wish he had articulated in the first moments after his burn injury. He and Joanna became parents for a third time when their daughter was born.

Lionel carries a photo of the entire family, including all three children, in his wallet and in his heart. It’s a reminder to stay motivated and work through whatever comes his way. “This is who I’m working for. My motivation to survive and thrive didn’t ’t come from a book or therapist or friends,” Lionel explains. “It came from being a parent.”

Joanna adds, “Now that we have gotten through the fire and learned to survive survival, our life has changed for the better.”

Kathy Edwards is a burn survivor and member of the national advisory committee for the Phoenix Society’s SOAR program.  She has conducted SOAR training workshops in several states and serves as an online chat moderator for The Phoenix Society.  She is a professor of communication at Weber State University in Ogden, Utah.

Transformation That Begins With a Phone Call

maureen and assistance dogWhen you call the Phoenix Society, you may notice something unique in this fast-paced world of automation–you receive a warm and personal “hello” from a member of the Phoenix Society staff.  And something truly special happens when a burn survivor, family member, health care professional, or fire service member calls in need of support.

 Our staff of 9 people greets thousands of calls each year.  Those calls are quickly connected to the most appropriate member of our program team who listens to the caller’s need and works through a course of action for each individual. Although this is just one of the many hats our program team wears in their work at Phoenix Society, it is treasured.  “These calls take me back to my days as a critical care nurse and allow me to connect personally with those we are here to serve” says Pam, Phoenix Society Program Director, who has been a registered nurse for 22 years.  “For so many, their phone call is their first connection to support and the beginning of a transformation.”

A Life-Changing Phone Call

Maureen’s first call to the Phoenix Society in December 2012 was one of those beginnings.  Maureen explained that she was burned at the age of 3 when hot oil was poured on the top of her head. However, the point she remembers really shaping her life was the first day of kindergarten in the 1950s. She arrived in class with a scarf tied over her head as she wore every day to cover her scars. It was when her teacher, unaware of her injuries, made her stand and remove her scarf that she froze in panic. Finally submitting to her teacher’s demand, she removed her scarf for the first time in public and remembers the gasps and comments that followed her as she ran down the hall to escape. Maureen, her family (including 6 siblings), and the community were unaware and unprepared to help her overcome the challenges she faced growing up with a burn injury.

“For so many, their phone call is their first connection to support and the beginning of a transformation”

For Maureen, this led to a life of isolation and constant struggle with confidence. The fear of people’s reactions kept her from taking off her wig or scarf and made it impossible to engage in daily life. She avoided experiences like getting a haircut, going swimming, or taking a walk on a windy day. It was easier to keep her scars hidden.

Fifty-seven years after her burn injury, in an effort to overcome her depression and connect with someone who could understand her feelings, she went to her local library to search the Internet for help. She searched “trauma,” then “burn trauma,” and that’s when a link to the Phoenix Society website appeared. She explored the online articles and resources with eagerness. One in particular helped “pull her out of her depression,” she recalls. “I read the Adults Burned as Children article and thought . . . ‘this is about me, I am not alone. . . these feelings are normal!’ I felt validated. A weight lifted and I called the Phoenix Society the next morning.”

Something Maureen said really struck Pam during that first conversation, “I want to participate in life instead of letting it pass me by, but I don’t know how,” she remarked. That call for help was the beginning of her transformation.

A Plan of Action

Over the next year Phoenix Society worked with physicians and social workers at the SOAR hospital closest to Maureen to further evaluate her physical scars, helped locate counseling in her local area and educate the center on the challenges of burn trauma, and walked Maureen through our online learning programs specific to empowering survivors with social skills. We also became her support system through regular emails and phone calls.

When Maureen first called, she had never met another burn survivor and “wanted to fix her burns.”  After walking through the process together, she knows there is no quick fix for a burn injury, but now has tools to help her live life. It has become a team effort over the last year as most of us have had the pleasure of speaking with Maureen and were all very excited to finally have the opportunity to meet her in person.  With the assistance of a Phoenix Society George Pessotti WBC Attendee Scholarship, she was able to attend the 2013 World Burn Congress in Providence, Rhode Island, and for the first time meet not only the staff with whom she had been communicating, but, most importantly, hundreds of burn survivors just like her.

For Pam, meeting Maureen at World Burn Congress was particularly rewarding.  “I know the courage it took for her to step out of her house and fly to Rhode Island.  It is so gratifying to see her blossom, make friends, attend sessions, and be empowered to live life,” she says.   Describing her experience at WBC, Maureen said, “I finally feel like I am human . . . accepted and loved.” maureen support

Looking back at the feelings of isolationshe had endured throughout her life, Maureen remarked, “I wish I knew about this 57 years ago.” She encouraged other survivors to reach out, saying, “The sooner you call Phoenix Society for help, the sooner healing beings.  But, it’s never too late!”

Our Goal for 2014

Every day we receive calls from
survivors like Maureen, but for every call we receive, the reality is there are thousands that have not yet connected to the resources and support they need to truly live life. In the U.S. alone, 450,000 people are treated for burn injuries each year.

The hands-on experiences of the Phoenix Society program team have made it clear that

“I finally feel like I am human… accepted and loved”

our primary need, as we move into 2014, is to reach the thousands who are still struggling alone and are unaware that the Phoenix Society is here to help them on their journey of healing. Second, we must have the staff and resources necessary to respond to the increasing number of calls we are receiving.

Your donations made Maureen’s transformation possible. Your continued support ensures we can reach survivors sooner in their recovery and be able to guide them to the support they need to overcome their struggles. What a difference you make!

Your donation supports Phoenix Society programs that provide burn survivors with the tools and resources they need to thrive again

Your donation supports Phoenix Society programs that provide burn survivors with the tools and resources they need to thrive again

Gaining and Maintaining a Healthy Body Image

By: Shelley A. Wiechman, PhD, ABPP

Body image is a complicated, multidimensional concept, but, simply, it refers to an
individual’s thoughts, feelings, and behaviors related to their physical appearance. Tom Cash, one of the world’s experts in body image, has identified different aspects of body image, [1] including:

  • Body image evaluation, which refers to the level of satisfaction or dissatisfaction with our appearance. Satisfaction is largely dependent upon the degree of discrepancy between our view of ourselves and our ideal. Studies have consistently shown that more than half of the U.S. population struggles with body image issues. Very few people believe that they meet the expectations of the ideal body image that is promoted in our society, whether we have burn scars or not.
  • The degree of investment that we place on our appearance, including the extent to which we define ourselves by our appearance, or, how important our appearance is to us. The development of our body image is influenced by many different factors, including social influences (such as the media), our own interpersonal experiences with family and peers, our personality traits, and any physical changes that we experience.

Clearly, how a person looks on the outside does not always determine how the person feels on the inside.

What We Can Learn From Research

Most studies have found that the degree of importance that a person places on their body image (investment) is more important than the degree or location of scarring. Women and those with larger burns also tend to struggle more with body image changes. We have also found that body image tends to improve over time as we get used to a “new normal” and take steps to adapt to a new image. [2,3]

Adolescence is difficult for anyone, but it is especially difficult if a person has any visible differences. Studies by Blakeney, et al [4] have found that adolescents who adjust positively to a burn injury are more extraverted (outgoing, social), are more willing to take a social risk, and have good family support. Teasing and bullying from peers can affect body image for years. Unfortunately, the more open and extroverted a person is about their burn, the more they open themselves up to teasing—which is why it is so important that adolescents learn how to deal with questions, staring, and teasing.

Effective interventions include the following components:

  • Rehearsing responses/exposure – Getting out there and practicing interacting with the public.
  • Psychoeducation – Being informed of how our body image is formed and what factors influence our body image.
  • Self-monitoring – Learning how to pay attention to our reactions to others and noting when we are being critical or negative of ourselves.
  • Cognitive restructuring – Learning how to actively change what we think and say, and how we view ourselves.
  • Desensitization – Getting used to stares and questions.

Adolescence is difficult for anyone, but it is especially difficult if a person has any visible differences.

One exciting study by Egan and colleagues [5] interviewed 12 participants who had adjusted positively to a visible difference. They found that this group of individuals had turned their visible difference into a positive influence and had used the experience to develop important skills. For example, when faced with adverse or negative events, they were more resilient, were more resourceful, and had a calmer approach to daily hassles. They had also found new interests to pursue. Their coping strategies included having an overall positive outlook on life; they were able to actively solve a problem and take control over a difficult situation; they used humor when appropriate, had more of a spiritual outlook, and had good family support. All of these skills can be learned and are not necessarily traits that a person is born with. Following are examples of burn survivors who have learned a variety of these skills and techniques to cope with their burn injury:

Personal stories

“Rachel” is a 30-year-old woman who had a burn injury when she was 15 that resulted in two scars on her upper arm and back that she could hide and cover when she wanted. She was from a culture where scarring was considered a disgrace and constantly heard messages from her mother that no man would find her attractive if they knew about her scars and that she should cover them whenever possible. Her father never spoke to her about this issue and remained silent. She grew her hair very long and never wore a bathing suit or a sleeveless shirt. She was from a warm climate, so this was uncomfortable for her in the summertime and she gave up her favorite activity—swimming. After graduating from high school, she left home and started college. She found a great group of friends who were supportive of her and very positive, but she never told them about her scars, fearing that they would not like her if they knew about them. She began dating and was always uncomfortable with intimacy, insisting that lights were always off and hiding the scars when she could. She fell in love with a man and told him about her scars and he did not seem to care. They married and she had a baby.

Five years into her marriage, she found out that her husband was having an affair and was leaving her. She immediately withdrew from society, secluding herself in her home, only leaving to take her daughter to school and back. She found a job that she could do from home. She was terrified to start dating again and was adamant that her husband had left her because of her scars. After a couple of years, she realized how depressed she had become and wanted a better quality of life so she sought out counseling with a cognitive behavior therapist. They worked together on monitoring her selftalk and challenging her negative thoughts. She began to realize that her past relationships had ended because of other issues and the characteristics of the men she had chosen, and had nothing to do with her burn scars. She also began to look at the messages that she received from her family members regarding the stigma of scars and how that has influenced her body image. Those perceptions were challenged and, although much harder to change, she is realizing that not all cultures view scars as stigmatizing and there may be other ways to look at her scars. Finally, she has realized that, although she is more accepting of her scars, she still does not like them. She is continuing to pursue surgical options and follows any new technology and products that may become available to improve the appearance of her scars. She is slowly gaining the courage to start dating again and that is a goal that she has set for herself for this next year.

“Jane” is a 50-year-old female who was burned 25 years ago when she was in a car accident with her husband. They had been married only a year, but he was devoted to her and cared for her during her long recovery. He never seemed to care about her scars. Some of her scars were visible, but the severe scars were on her torso where she could choose to cover if she wanted to. She and her husband went on to have a happy marriage and raised a family, and she had a successful career. She also had many close friends who did not seem to notice her scars. Despite the fact that she noticed people staring at her over the years and had experienced numerous questions from strangers (some of them quite rude), it had not really bothered her or affected her body image. Tragically, her husband passed away a couple of years ago after a long illness. She is now thinking about dating again, but is suddenly more aware of her scars and, for the first time, is self-conscious about how another man might respond to her scars. She is struggling with when and how to tell a man about her more extensive scars, and is worried about what his reaction might be. After several sessions with a counselor and numerous talks with her girlfriends, she realizes that most women are self-conscious about different aspects of their body, especially at age 50. She recognizes that she is not alone in facing the challenges of dating later in life. She has also come to realize that she has many strengths and talents that she relies on in social situations, many that have come about as a result of her coping with her burn trauma. She has a dynamic personality and is a good conversationalist. She is interesting and has many hobbies and activities that she enjoys talking about. The men she has dated have found her engaging and exciting. She has decided to trust her instincts on when it is the right time to tell a man about her scars and trusts that his response will also help her determine whether or not he is the right person with whom to be in a relationship.

It is important for you to surround yourself with positive people.

“Jessie” is a 16-year-old boy who, at age 9, was burned after tripping and falling into a campfire. The first several years after his burn injury were confusing and very challenging for him. His scars are all visible. When he first returned to school, he received a lot of support from his classmates and peers who were very nice to him and helped him out whenever he needed it. After a couple of years, he went to middle school and met a new group of peers who were not always supportive. Some of them were very mean and he was teased a lot about his scars. He withdrew and pretended that their teasing did not bother him, but, deep down, he was sad and embarrassed by his scars. He stopped hanging out with friends, dropped out of activities, and usually came home from school and locked himself in his bedroom and engaged in more solitary activities (reading, playing the guitar). His parents became worried and started to force him into activities. Against his wishes, they signed him up for a camp for kids with burn injuries. He went reluctantly, but while there, made some new friends, opened up, and realized that he was not alone. He also realized that everyone at his age gets teased about something, whether or not they have a burn scar. At camp, he learned some great, funny responses to deal with questions and teasing. His true personality started to shine. He was funny and could make anyone laugh. He was also really good at playing the guitar and could entertain his cabin mates. When he returned to school in the fall, he realized that if he could make people laugh they forgot about his scars. He became the “class clown” and, for the most part, teachers enjoyed having him in class and found him very engaging. He also joined a band and continued to pursue his talent as a guitar player. He again realized that he was receiving more attention for his talent than his scars and had a lot to talk about with friends that had nothing to do with his scars. He recently asked a girl to the prom and is excited that she said “yes.”

Summary

Body image is a complicated concept. A person’s body image can be affected by their gender, societal influences, age and time of life when they are burned, and whether or not their scars are visible or can be hidden. But all burn survivors who have adjusted well have had to learn how to interpret information from their social world in adaptive ways. So any intervention that focuses on teaching skills and garnering strong social support networks can make a positive difference on a person’s body image. It is important to surround yourself with positive people. Take an inventory of your life. Are there people in your life that give you energy and you walk away from your time with them feeling confident and positive? Are there people in your life that drain you of energy and confidence? When looking for a therapist or counselor, ask if he or she uses cognitive-behavioral techniques and has experience in teaching skills aimed at improving body image.

Take a look at the Phoenix Society’s new Online Learning Community, accessible through the Society’s website, http://www.phoenix-society.org. There you will find the following very helpful resources, developed by Barbara Kammerer-Quayle, that have been adapted and expanded to an online learning format:
• Beyond Surviving: Tools for Thriving After a Burn Injury, which includes information on supporting burn survivors with techniques to feel confident in social situations
• Creative Cosmetics, An Image Enhancement Program for Improving Body Image

For additional resources visit: https://www.phoenix-society.org/resources/resource-center/

References
1. Cash TF. The Body Image Workbook: An Eight-Step Program for Learning to Like Your Looks. Oakland, CA: New Harbinger Publications; 2008.
2. Lawrence JW, Fauerbach JA, Thombs BD. A test of the moderating role of importance of appearance in the relationship between perceived scar severity and bodyesteem among adult burn survivors. Body Image.2006;3:101-111.
3. Thombs BD, Notes LD, Lawrence JW, Magyar-Russell G, Bresnick MG, Fauerbach J. From survival to socialization: A longitudinal study of body image in survivors of severe burn injury. Journal of Psychosomatic Research. 2008;64:205-212.
4. Blakeney P, Thomas C, Holzer C 3rd, Rose M, Berniger F, Meyer WJ 3rd. Efficacy of a short-term, intensive social skill training program for burned adolescents. J Burn Care Rehabil. 2005;26:546-555.
5. Egan K, Harcourt D, Rumsey N. A qualitative study of the experiences of people who identify themselves as having adjusted positively to a visible difference. J Health Psychology. 2011;16: 739-749.

Shelley Wiechman, Ph.D., ABPP (Rp), is a clinical psychologist who is board certified in rehabilitation psychology. She has been the psychologist for the University of Washington Burn Center at Harborview for the past 12 years. She is part of the multidisciplinary burn team and provides individual therapy for burn survivors. She also is a coordinator for the Phoenix Society’s SOAR program. Her research has focused on studying both acute and chronic pain after burn injuries, and improving long term outcomes (including body image) of burn survivors. She has a theoretical focus on positive psychology, which examines the coping strategies and attributes of those who have adjusted positively to adverse situations.

This story is an excerpt from The Phoenix Society’s Burn Support News, Issue 2, 2012. Burn Support News is a quarterly publication that contains articles on the emotional, psychological, and social aspects of burn recovery.

Phoenix Society Young Adult Volunteer Opportunity

Attention young adult volunteers! We invite you to be a part of Phoenix Society’s World Burn Congress 2013 and make a difference in the lives of other young adults!

We are seeking young adults (18 to 25 years old) who are willing to volunteer and share their wisdom, their journey, and their hearts as “Peer Mentors” for the Phoenix Society’s Young Adult Workshop at World Burn Congress 2013 in Providence, RI! These special peer mentors will be accepted based on their motivation, leadership experience, and commitment to being a role model for YAW participants. 

DSC03696Phoenix Society offers the Young Adult Workshop annually at World Burn Congress. This multiple-day workshop is about peer support, self-discovery, healing, and achieving personal goals. Now, young adults are invited to give back by serving in a volunteer leadership role within this workshop and throughout the Conference by becoming a Peer Mentor. Read on for more information!

Peer Mentors will:

  • Engage participants in welcoming conversations; decreasing social discomfort and increasing group cohesion.
  • Share their stories, perspectives, and wisdom during all workshop activities, providing a “leadership via example”. Peer Mentors will be both participant and leader.
  • Encourage shy or disengaged workshop participants with casual conversation, informal pairings, empathy, etc.
  • Catalyze informal activities throughout YAW, ensuring that all workshop participants are invited and encouraged to be a part of the group at meals, workshops, social times, extra-conference activities in the evenings, etc.

Commitment includes several schedule requirements:

  • Phoenix Society volunteer training requirements [minimum (2) online 1 hr. courses] and several pre-conference planning phone calls prior to World Burn Congress.
  • Arrival in Providence, RI in time for an on-site planning meeting prior to the workshop, Tuesday evening, 10/8/13.
  • Attendance at ALL workshop components: Wednesday 10/9/13 12:30 -4:30pm; Thursday 10/10/13  afternoon support group; Friday 10/11/13 lunchtime session and afternoon support group.
  • Attendance at World Burn Congress events (such as general sessions, meals, open mics, etc.) with YAW participants.

Apply:
The peer mentors have the potential to have a huge impact on attendees’ experiences, both at the workshop and beyond! You are encouraged to apply for this exciting position if you possess at least one of the following characteristics: previous attendance at Young Adult Workshop, leadership experience with burn camps or other supportive programming, SOAR volunteer experience, and knowledge of the Providence area (esp. for informal group activities).IMG_0407

We would love to share more information about this opportunity! Please contact Jessica Irven at jairven@yahoo.com to express interest by Friday June 14th.  In your response, please note your thorough answers to these questions:

  1. What could you offer to the Young Adult Workshop participants (and facilitators)? (Can include life experience, past community service and/or extracurricular activities, personal strengths, etc.)
  2. Why are you interested in this role at this time?
  3. Briefly (1-5 sentences), how has your burn injury influenced and impacted your life and the person that you are today?
  4. Describe your experience in the following areas: previous attendance at Young Adult Workshop, Phoenix Society SOAR volunteer, leadership experience with burn camps or other supportive programming, knowledge of the Providence area.

We will contact you via email to follow-up.  If you meet the criteria, we will set-up a short phone interview to explore your interest.

  • Ability to self-fund your trip is appreciated, however, Phoenix Society offers scholarships for attendance through the George Pessotti World Burn Congress Attendee Scholarship fund with a deadline of July 1, 2013. Apply here.

If you are interested in general participation in the Young Adult Workshop and World Burn Congress, please visit the WBC 2013 page on our website. Thank you!

A Survivor Story – Helping Our Youngest Survivors Have a Positive Return to School

with teen girl

Lisa Donovan (Left) with UBelong participant

Lisa Donovan, burned in a car accident at 18 months old, grew up in a small town that wasn’t familiar with burn injuries or the challenges they present, especially as she prepared to start school. 

Most children could pass the mandated motor skill tests required for 1st grade admission, but for Lisa they felt like defeat. Her burn injuries left her with damage to her vision and scaring on her hands that made the required skills of balancing on a beam and touching her pinky to her thumb impossible.

The motor skill tests were only the beginning of the many challenges the Donovan’s would face. Because of the lack of education and the community’s unfamiliarity with burn injuries, Lisa and her family found themselves struggling with comments like, “it isn’t Halloween, take off your mask!” or a phone call from the school principal asking Lisa to stay home for a few days because her scars were frightening a new student.

While these were not everyday occurrences, they did shape Lisa’s school experience, and the recollection of the hurt they caused is poignant, even today.  As a result, Lisa became a Child Life Specialist and is ecstatic to be a part of the development of the Phoenix Society’s Journey Back school re-entry resource.

She reflects on her own experience and understands all too well the relief she and her family would have had if the school and other students were educated about burn injuries, encouraged to display empathy, and given the tools to ask questions in a positive way.  So much pain could have been avoided if Lisa would have had access to the coping techniques and social skills offered within the Journey back resource.

Lisa now works hard to ensure all families have the tools and support needed as they return to school after a burn injury.  Eleven years ago, she began working with Shriners’ Hospitals for Children as a Child Life Specialist – a familiar place for her, as she is a former patient. In 2003, while searching for information to send home with a family about to be discharged, she discovered the resources offered by the Phoenix Society for Burn Survivors. 

She quickly attended Phoenix Society’s World Burn Congress and later introduced the Phoenix Society’s SOAR (Survivors Offering Assistance in Recovery) peer support program to her hospital in Boston. Today, Lisa continues to be an important part of the Phoenix Society family and the expanding programs we offer. She has assisted with the development of the Journey Back resource and materials, has shared her story in video productions, and currently volunteers as a facilitator with the UBelong youth and family program.

“Seeing families receive the help they need  and the knowledge that they are not alone after they leave the hospital, is extremely rewarding,” says Lisa.  “The fact that this entire program will be easily accessible online, with  videos, worksheets, and educational manuals for teachers, parents, and all professionals to help a child, is very exciting.  Even those that don’t have a local burn center can get the resources and support they need without leaving the safety of their home.  This is a resource that would have helped me through every stage of my school years.” 

No child should struggle alone with school re-entry, as Lisa did. Your support of the Phoenix Society and resources like the Journey Back school re-entry program are changing the lives of so many. Your 2013 Spring Membership Gift will empower so many like Lisa by providing the tools and support need to thrive again!  

donate_nowTo learn more about the Journey Back program click here and check back this summer to download the entire program.