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.

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

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.

Family Finds Support in UBelong Program at World Burn Congress

In August of 2010, Domenic Vinacco was your average teenager, watching online video stunts with his teenage friends. The group decided to reenact an online video that included a Super Soaker water gun filled with gasoline, a match, and enough fumes to cause Domenic’s shirt to ignite. In an instant, his world—and that of the Vinacco family—changed.

Suffering burns to almost 50 percent of his body from head to toe, the 14-year-old spent the next 2 months in the hospital undergoing the challenging physical recovery that accompanies a burn injury.

Domandsis

Domenic with his sister, Rachael

But the family’s journey had just begun. Still reeling from the accident, the Vinaccos struggled to cope with the ongoing emotional toll.

“I could see after everything happened that everyone just kind of shut down and didn’t talk about anything, especially Domenic,” recalls older Rachael, 19.

Seeking the support and resources to deal with the many unanswered questions and struggles that face a young burn survivor and family after hospital discharge, the Vinaccos attended a Burn Awareness Walk in Boston in June 2011. It was there that they crossed paths with Phil Tammaro, a fellow burn survivor and firefighter, who also serves as a Phoenix Society advocate.

“I started talking with him about the information in Burn Support News, about the Phoenix Society’s World Burn Congress, what it was, and if he thought we would benefit from it,” says Domenic’s mother, Barbara. After Phil’s pitch, the Vinaccos were sold.

In September, Domenic, Barbara, and his father, Richard, attended the World Burn Congress in Cincinnati, Ohio. With the goal of meeting survivors and families that had been in similar circumstances, the Vinaccos almost immediately found what they had been looking for.

“From the minute we got off the plane, till we got back on, it was so well run, so well organized,” says Barbara. “Every minute we were there, we felt
surrounded by people who had been through similar experiences.

“Knowing there were other people out there, I just think it was helpful to know and see how they have moved on, and how they got through certain things, and learning about additional resources for burn survivors and their families. Every second we were absorbing information, and making contacts with other families. We also met a family that had a son Domenic’s age, and got connected with them, along with others each day.

One resource was tailored specifically to Domenic’s need for peer support. UBelong, a program within the Congress, is designed to positively inspire and support children and teens, ages 7 to 17, using a mix of fun, social skill building, and peer group interactions.

Initially apprehensive about the thought of interacting with other burn survivors his age, including sharing his story, Domenic “dragged his feet” going into it. “On a scale of 0-10, he said 2 or 3 after the first day,” recalls Barbara. “The next day, it was a 10.”

“I didn’t know anyone at first, but I started to make some friends so it got a lot better,” explains Domenic, who turned 16 in April. “I found it was a lot easier talking to people who had been through a similar experience.”

The almost immediate growth that he made socially was noticeable by more than just the family. A UBelong staff member made sure to seek out Barbara and Richard at the event to alert them of their son’s progress.

Domenic believes it was the peer support and learning to communicate his story to others that made his experience so successful. The lessons learned, he said, have been effective in everyday life.

“When people were sharing their stories, I found that it gave me tips on how to respond when people ask you what happened, and how to respond without getting nervous or anything like that,” says Domenic, who has used the those tips when returning to school or going out in public. “It’s easier to explain what happened now that I went there.”

Although she was unable to attend the Congress, Rachael, who was away at college, agrees that the experience helped her brother. But she has also noticed
the impact on the family as a whole.

“After learning these tools and resources, communication is definitely what they learned, including being able to talk to everyone and family,” she says. “And Domenic’s more open—there’s more of a confidence.”

In 2012, Barbara Vinacco was asked to speak before a group in Providence, Rhode Island, in support of the Phoenix Society. The city will host World Burn Congress in 2013 and the Vinacco family is actively involved volunteering their time planning for the event.

“I just talked about the compassion, the camaraderie, and how we felt that the whole time we were at the Congress we were surrounded by people who have been through similar circumstances,” says Barbara, “and how that has helped us move forward.”