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.

Surviving the Holidays After a Loss: One Family’s Strategies for Coping

By James A. Bosch MA, MFTi

It never occurred to Tara Stackpole that her world could be turned upside down any more than it had been on June 5, 1998. That was the day her husband, Capt. Timothy Stackpole, NYFD, was severely burn injured in a Brooklyn structure fire when he and two other firefighters got trapped in a collapsed building. Timothy suffered third- and fourth-degree burns over 36% of his body. One of his partners died in the fire, and the other passed away a month later.

Timothy feared he might never walk again, let alone go back to work. He and his family faced a long journey of recovery, rehabilitation and coping with the many difficult stressors that follow a traumatic burn injury.

Timothy Stackpole with his youngest son, Terence.

Timothy Stackpole with his youngest son, Terence.

For many families in this situation, a particularly challenging source of stress is the aggressive “media storm” that often follows such an incident. “The media can be intrusive to your family life though during a difficult time like this,” Tara says, “You start to feel like your life is very exposed and sometimes out of your control.” Tara is grateful to be able to say that her family’s experience turned out to be fairly manageable, due largely to the assistance of the FDNY. The department not only provided manpower to deal with the reporters who initially “camped out” at the hospital, but it also sent others to the hospital to act as security for the Stackpoles.  

Despite the daunting outlook and overwhelming new challenges, Timothy was determined to rehabilitate and get back to his regular duties at the department. Tara was at Tim’s side as often as possible, juggling hospital visits with maintaining a household and taking care of their five children.  

With hard work, faith, and determination, Timothy not only achieved his goal of going back to work, but he also earned a bachelor’s degree.  On December 6, 2000, his name finally came up on the captains list; in March 2001, Timothy returned to full duty at the fire department; and by early September, he had received his eagerly awaited promotion. Tim was thrilled. He loved his job more than ever. Life appeared to be getting back to normal for the Stackpole family.

Then on September 11, 2001, the unthinkable happened—the terrorist attack on the World Trade Center in New York City. Two jet airliners hit the Twin Towers. For Tara and her children, the world once again turned upside down, but much more tragically and permanently. Timothy died.

After 16 years of marriage, Tara lost the love of her life, and Kevin, Kaitlyn, Brian, Brendan, and Terence lost their dad. Their hometown was in ruins around them. One of Tara’s first thoughts amidst the shock and the dust was, “Oh, my goodness, Christmas is going to happen! How am I supposed to give my children a Christmas?” She didn’t want her children’s future to include having to tell the story about how daddy died and mommy fell apart. What follows is the story of how Tara got through the first and subsequent winters, as well as other milestones and anniversaries.

Going Into Survival Mode

The first Christmas, she went into survival mode. Her first thought was, “I need to take my kids away from all of this and just get through it.” Her family and friends swooped in and took over—and didn’t allow her to escape. Tara’s willingness to rely on others helped her make it through. She took things one step at a time. “I couldn’t even open my box of special ornaments. Every one of them had a memory attached to it. Those memories would have been a knife in my heart.” That box stayed unopened, but a couple weeks before Christmas the fire department provided a tree and new ornaments.

“My husband was a very traditional man and loved having an open door policy during holidays and on special occasions,” recalls Tara. The family decided to keep alive the spirit of celebration Tim had embodied. They also blended old and new traditions; for instance, the following Christmas they took out the old box, decorated one tree with the special ornaments and a second tree with new memories.

Creating New Rituals

Another way Tara helped her kids was to createnew rituals.  One of these was a holiday breakfast, originally intended for Tara’s young daughter and her girlfriends. The event grew to include Tara’s other children and their friends as well. The now-annual tradition continues with Tara’s adult children coming home early for the holidays specifically so they can attend the “Stackpole breakfast.” Tara recalls stepping back on one of these special mornings while all the kids were filling her house with laughter and joy and thinking, “Darn, Timothy would have loved this. It’s something he would have done!” The new traditions have brought meaning back to the holidays while at the same time honoring the memory of their loved one.

Supporting Others

Tara eventually took a step that significantly improved her coping abilities. She accepted an invitation to become a Phoenix Society SOAR volunteer and got involved in a 9/11 family advisory board. The Phoenix Society for Burn Survivors SOAR program helps burn survivors and their families deal with the aftermath of a burn injury and get back to living their lives.

“When I was first asked to help as a SOAR supporter, I was hesitant because my husband was since deceased,” Tara admits. “But when I listened to what was being taught, I thought to myself, ‘I know how these patients and their families feel. I knew I could easily connect with them and help in some small way.”

Last year, Tara provided support for the family of an injured firefighter from her husband’s old department. It was the week before Christmas, and she would simply go and sit with them. “The holidays were basically a wash for them, all I could do is be honest and tell them there is no one way to get through this.” When the family remembers that first difficult holiday, they will surely also remember Tara’s loving presence and the specific, powerful support that comes only from someone who has lived through it themselves.

Tara speaks of her gratitude for a psychiatrist who visited her within a week of her husband’s death. The psychiatrist told her that grief is something you never really get over, but that it lives parallel to your life, like two strands. Sometimes those strands lay side by side. At other times, they intersect and cause a bad day or a tough moment. He shared his best advice for dealing with those hard times: honor them, give them the respect and space they need, and allow all the feelings that come up rather than fighting them or pushing them away. This advice, which Tara says has given her great peace and acceptance, is something she can now share with the families she supports.

Making Changes That Heal

After Tim’s death, Tara had to make certain changes in order to heal. One was to move closer to the ocean and to her family. Another was to stop feeling that she had to participate in every single 9/11 ceremony and event. Instead, a private Mass is offered in her backyard every year on the evening of September 11. There a core group of family and friends meet to celebrate Timothy’s life. Tara says the group changes and evolves, just like she and her children are evolving with Timothy gone. She recalls a particularly unforgettable year when the Mass was held during an especially brilliant sunset. Tara looked across the bay at downtown New York and saw the two spotlights from Ground Zero shooting up and through the colors of the evening. She became peaceful. She felt that Timothy was indeed there with them and realized that life does continue.

From left to right:  Kevin, Tara, Brian, Terence, Kaitlyn, and Brendan Stackpole.

From left to right: Kevin, Tara, Brian, Terence, Kaitlyn, and Brendan Stackpole.

For Tara, it is not just important dates that bring hard times. “Sometimes on the less significant days I miss my husband more…the private moments and private anniversaries are sometimes harder.” They are as much a part of the fabric of her life as the happy memories.

 Over the years, the most successful strategies become clear. “Do not be hard on yourself, lighten it all up. You don’t have to set out the entire Christmas Village, just take a few things out.  Share stories about your loved one.”

Tara gets great joy from hearing one of her kids say, “Dad would have loved this.” Moments like this are a reminder that we keep our loved ones with us through our stories. She encourages others to disengage from the materialistic aspects of the holidays now, to not wait for a tragedy to make it painfully clear what is really important.

 For the Stackpole family, keeping Timothy’s presence alive through stories brings comfort, and the blending of old and new traditions has helped them move forward as well. Tara also feels strongly that when you’ve lost a loved one, the best way to honor them is to live your life. “That is what we can do,” she explains “We can’t bring him back, but we can live a life he would want for us.”

Tips for Getting Through the Holidays After Losing a Loved One

No matter what holiday you celebrate and regardless of your chosen tradition or religion, it is possible to survive the death of a loved one and find meaning in the holidays again. The most important coping strategy to remember, especially during those first holidays, is to create space for difficult feelings and awkward moments.

Helpful Tips on Getting Through the Difficult Holidays and Anniversaries

Do only what feels right. There are no right or wrong ways to celebrate the holidays without your loved one. Consult with your immediate family and come up with a plan that works for you. Resist the temptation to do what you always did or to feel pressured into attending parties or occasions that feel too difficult.

Find peer support. Connect with other groups of individuals who are also grieving. Find a grief support group or reach out to an individual who you know has lost a loved one.  Find out how others cope with the holidays and you will learn you are not alone in your feelings.

Nurture, nurture, nurture. Respect your body during these difficult times and practice lots of self-care–bubble baths, walks, time alone, and distractions (such as movies). Pay attention to cues that you are overloaded and need to take care of yourself. Avoid harmful coping techniques, such as alcohol, drugs, binge eating, and not eating enough. Set limits and boundaries with others when you need space.

Additional Insights

Allow yourself to not participate in the hype. Try to disengage from the commercial aspects of the holidays. Give yourself permission to shop or not shop. Set aside the pressure to “keep up” with the hype of the season. If you have small children, ask for help from relatives and friends to help you create a holiday atmosphere for them. You can’t buy away grief.

Create ritual. Hang a stocking for your loved one, set a place for them at the Chanukah dinner, create memory alters with photos from past holidays, participate in your individual faith celebrations and remember your loved ones in services or by lighting candles for them.

 Helpful Pointers for Getting Through As a Family

Everyone in the family may grieve differently. Give each other plenty of space, and support each other when asked. Know that difficulty and conflict can arise in families as each family member may have different ideas on how to celebrate. The optimal way to deal with this is to openly talk with each other about the expectations and the roles people want to play.  Here are some holiday strategies:

1.      Share stories around the table about your deceased loved one.

2.      Look at old photo albums together.

3.      Observe a moment of silence together to honor your loved one.

4.      Place an empty chair where your loved one normally sat and place a flower or candle there.

5.      Decide which traditions you want to keep and which you would like to change.

Something experts seem to agree on, which is also emphasized in Tara’s story, is that the most important thing you can do is talk about your loved one. At functions, if you do not speak his or her name, often no one else will either. Say your loved one’s name, include them in stories of past holidays, and allow space for the tears that may come with these memories.

James Bosch was burn injured as an infant. He has dedicated much of his professional life in the service of helping other burn survivors and their families heal and find meaning after a burn. Acceptance of new life, new body, and finding new meaning are at the core of his work. He speaks and facilitates at burn meetings in Canada and the United States. He is a member of the Phoenix Society for Burn Survivors SOAR National Advisory Committee and is a consultant.

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

Taking that “Camp Magic” Home With You

Time at burn camp is filled with so many enriching experiences, from making new friends and trying new activities, to learning new skills. It is not unusual for campers, and even staff, to think, “Too bad camp can’t last longer” or “I wish every day was as great as it is at camp.” The following tips may help you make that “camp magic” last beyond your days at camp.

For more information on ideas and advice for campers, parents, and care givers read the entire article here.

A Family Faces the Challenges of a Burn Injury Together and Grows Stronger in the Process

In the summer of 1999 the Bowers were a self described “successful, middle class, loving family” living in southeast Texas, near Beaumont, where David was an assistant plant manager at an air separation facility and Carly was a stay-at-home mom who worked part-time as a church youth director. Daughter Samantha was nearly 9 years old and son Nathan was 2. The family was looking forward to a possible job transfer for David that would send them to Indiana, closer to much of their extended family.

Bowers family - group shot casualSuddenly Life Changes
Then on August 20, life for the Bowers family changed. While 31-year-old David was at work, a high pressure oxygen pipe ruptured and engulfed him in a flash fire with temperatures up to 5000 degrees. Carly recalls, “Nathan was down for his afternoon nap and I was working on a lesson for our youth group. The phone rang. It was a phone call that all of us dread getting. It was a nurse from our local hospital that told me my husband had just been in a serious accident at work and I needed to get to the hospital as soon as I could. My ‘perfect’ little world started to crumble out from underneath me.”

The prognosis for David was grim. Based on a standard calculation that took into account his age and extent of burn, the chances that he would not survive exceeded 100%. But when the doctor delivered that news, David suggested that she “get busy” because he was going to “beat the odds.”

Read the full story here.

New Friends, New Support Systems, a New Outlook on Life

After receiving severe burns to over 76% of his body, Alex Trevino faced a long road to recovery and regaining the ability to do the everyday tasks that he was used to. However, through hard work he was able to rebuild his life and discover and pursue new passions.

IMG_0048editAlex, is now a trained volunteer SOAR peer supporter at Columbia St. Mary’s Hospital, where he participates in peer meetings. He believes the support program is crucial to recovery and he notes that there he feels he is able to give support, hope, and real answers to adult burn survivors.

“Don’t be afraid to ask for help,” he advises other burn survivors. “You have so many resources. There are so many people that can help you. There’s no easy way around [recovery]. Hard work is what it’s going to take. I’ve realized the only person that’s going to stop you is you.”

Alex has also volunteered as a camp counselor for the Wisconsin Alliance for Fire Safety (WAFS) Burn Camp in East Troy, WI. He has also opened a successful tattoo shop with his brother-in-law and has plans to open a second location in the future.

Read more of Alex’s story from Burn Support News here.

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.