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.

Wrapping up our Skills and Moving On at UBelong

While today is the last day of UBelong programming, we know that the impacts for each of us will go on and on.  We wrapped up by reinforcing the skills from earlier in the workshop (our confidence through STEPS, Rehearse Your Responses tools, and bullying prevention tools).  Everyone got a chance to say out lout how important it is to be understood and  make new friends.

Our program closing ceremony included previewing the video we’ve been working hard at, as well as a ritual that reminds us all of how we are all important parts of the survivor community.  We may be leaving Providence tomorrow, but we will all take the lessons and support with us!

WBC 2013 Volunteers – We Thank You!

Phoenix Society volunteers give with their hearts and offer the many hands needed to make World Burn Congress an inspiring and healing week for all in attendance. Many give countless hours on top of their busy work and home lives to quietly work behind the scenes and make it all happen. We honor and value their contributions and would like to extend our deepest thanks for all they do.

“Our fingerprints don’t fade from the lives we touch” – Tyler Hawkins

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Whether you are a volunteer that has given an hour or worked with us for years, rest assured that the lives you touch are many and the gifts you give are great. We welcome your continued involvement in this amazing community.

With Heartfelt Gratitude,

Phoenix Society for Burn Survivors

UBelong Participants Learn that Bullying is Never OK

What a day at UBelong!  We experienced a large group lesson from bullying expert, Katy Pearson, complete with a skit and small group breakout sessions to reinforce this important content.

Today we learned the at bullying is never okay, and that both the target and the bystander in bullying situations can do something to change things.  Practicing these things helped us understand how to respond in a bullying situation.

Mentors from the Young Adult Workshop visited each small group to share their stories.  Hearing how they felt when they were the same age as UBelong participants helped to give perspective and inspiration.

Everyone was very excited to keep working on our video, expressing ourselves in even deeper levels.  Stay tuned for the exciting reveal of this video where participants tell everyone what they ” want you to know!”

UBelong Participants Experience Expressive Art!

Peace Love Studios helped kick off UBelong programming with Expressive Art!

Our two oldest small groups got to actually travel to the Peace Love Studios to work on their masterpieces! The two younger small groups enjoyed a visit from Peace Love staff here at the Convention Center.  Everyone had a chance to “express themselves” individually and be a part of something much bigger, too – a piece of group artwork!

We’re all very excited to have started work on our own UBelong video, which is also all about expressing ourselves.  In it, everyone at UBelong has a chance to tell you what they “want you to know”.  Through this week, we’ll talk a lot about being BRAVE, and today’s video content sure started to show off how brave all these UBelong participants really are!

Parent Workshop Addresses the Needs of the Entire Family after Burn Injury

The parent workshop was held today for parents coping with burn survivorship within the family. The workshop provided information, perspectives, expert advice and open discussion for the attendees. Aimed at both parents of child/teen survivors as well as parents who are themselves burn survivors, this workshop addressed the impact that burn injury has on children, teens and family.

Parents had the opportunity to explore what their family had experienced and gained useful information and tools to manage the future.

A facilitated support group follows this session to allow for further discussion. The parent support group addresses aspects such as guilt and children’s behavior challenges. Hearing that you are not alone, connecting with each other, and learning about recovery helps parents prepare for the next stages of their family journey.