Survivor Spotlight: Luis Nevarez

Our recent Burn Support Magazine features a survivor profile of Luis Nevarez, firefighter and burn survivor, who suffered an electrical burn injury.  Luis shares his story of recovery, support, and his enthusiasm for ‘getting back to living’ – back to full duty as a firefighter, and promoting through the ranks to his current role as Division Chief.  Here is that story:

By James Bosch, MA, MFTi

There’s a voice in my head. It’s been there ever since the day I conducted the interview for this story. I’m glad the voice is there, because it’s the voice of Luis Nevarez, and Luis has powerful wisdom and positive messages to share. I’m sure that you too will be inspired as you learn of Luis’ perseverance and courage in the aftermath of a doubly devastating injury—a severe electrical burn that ultimately led to the amputation of his left forearm.

It is difficult to bounce back from injuries of this nature. It is rarely quick or easy, and every survivor has his or her own story and path to recovery, based on individual life circumstances and support networks.

Many firefighters who have survived burns say that they struggle with seeing themselves as having survived a trauma versus simply having experienced an occupational hazard. Luis’ story includes both sides of this issue—although his main focus was getting back to work, he recognized along the way that his burn injury uniquely qualified him to help other individuals recovering from similar traumas.

In this interview, Luis mentions having a more synergistic life view since the accident. In its most basic definition, this means that by working together we are stronger than the individual. I have had the great fortune of seeing Luis in action as a volunteer with burn survivors. We co-facilitated a support group for young adult male survivors one evening. Luis’ calm presence made the guys in the room feel comfortable. He really let his own life story be an example; I watched his empathy and care in action.

Luis Nevarez is an amazing person for each of us to have on our support team. And if you listen closely, you just might hear his encouraging voice in your head the next time you’re facing a challenge.

James: When you were a kid, did you know you wanted to be a firefighter?

Luis: I can’t say I knew I wanted to be a firefighter. I was always into sports; that was my main focus as a kid. In high school, I had a job bagging groceries at the local supermarket. The fire crews would come in to shop, and I’d ask about their jobs. They finally invited me to the firehouse. Talking with them, I realized that it was a job I was interested in, so I enrolled in the Fire Academy and applied to many counties throughout California. My first job came after a 15-hour Greyhound bus ride from LA to Humboldt County. I shaved and changed in a Denny’s [restaurant] bathroom and was ready for my interview. Needless to say, I was hired and that is where my career as a firefighter began.

James: What most motivated you to accomplish your goal?

Luis: I have always believed that if you really want something, you have to go grab it. No one will just give it to you. After I was hired for that first job in Crescent City, I tested all over the state to get into a full-time firefighter position. Tulare City was one of the places I tested, and 2 years later they called me for a job. I’ve been there for 25 years, and throughout my career I have stayed consistent with training and education. I have worked very hard to attain my goals in promoting through the ranks.

When I was injured and lost my hand, doing office work was not an option. I was determined to go back as a firefighter with no limitations or special accommodations. The more people questioned if that was really possible, the harder I worked at it. This field is very competitive and promoting was not easy and on one occasion I did not get the promotion. I did not let this get me down, I realized my strengths were in the field, not in administration, so I went back to school and received a bachelor’s degree to balance out my skills. The second time I went for the promotion, I got it! I always tell people that it’s not how you fall down that matters, it’s how you get back up.

What motivates me? My passion for the fire service and family. I’m a single dad with three kids that I have taught to work hard for their dreams. They are excelling in their lives.

James: Can you talk about your accident and your experience in the hospital?

Luis: My accident happened on January 26, 2002. I accidentally touched a hidden 12,000-volt line while breaking a limb off of a smoldering tree. This caused my burn injuries and eventually the amputation of my left forearm. I was in the hospital for 35 days. I was back to work on light duty by August, and 364 days after my accident I was back on a fire truck with no accommodations or restrictions. I was missing an arm, but my heart was there and my passion was there. It was a long road of hard work to get my job back but again I was determined.

The day I was admitted to the hospital, the HBO (hyperbaric oxygen chamber) nurse asked me if I had trouble being in confined spaces. I laughed and asked if they could give me continuing education hours towards my confined space rescue certification. That was the attitude I brought into it.

There were definitely challenges being in the hospital and in my recovery. The support that I had from the fire service, my family, and friends contributed to the positive outcome of my rehabilitation.

James: What are some of the emotional challenges you have faced?

Luis: Some days were worse than others, and I still have some bad days. What I’ve learned is to just ride out the hard days and remind myself that the feelings won’t last forever. The next day I am usually back to myself again. Accepting the emotions I feel at the moment instead of ignoring them is important in the healing process. It’s a daily challenge, but any step forward is better than none.

My kids had to deal with people staring at me when I didn’t have a prosthetic, especially in public places like taking my son to baseball games or the mall with my daughter. I had so much support, but I don’t think my children received the proper counseling to deal with the accident. I really don’t know how they got through the experience so well.

Luis’ three children are Ashley (24), Luis, Jr. (22), and Alyssah (15).

Ashley: Since the accident, nothing about my dad has changed except that he now has a hook. He has taught me to be a very hardworking person and to not give up no matter what. That’s his motto: Never give up. I would like employers and loved ones of survivors reading this to also know that they should never give up on people with a disability. Just look at my dad!

Luis, Jr.: To watch him overcome his accident showed us that we can find a way to do anything. He has taught us to stay positive and surround ourselves with people who want us to succeed. My dad is great because he doesn’t let “how” be a factor. Just envision yourself there and you will find a way; have fun and enjoy every day.

Alyssah: The accident brought us closer as a family. We laugh together and make jokes. I think what is great about my dad is that he is a living example of how you can see the positive side of things. My dad is the person you can go to for anything. He looks at life as a challenge to win. I wouldn’t change it now. My dad is amazing as he is.

Luis: At first I had some body image issues. It was challenging for me because people would stare at me and I found myself repeating my story over and over again and repeating my trauma making it difficult to move forward. Aside from the amputation, I was dealing with third-degree burns all over my body that were hidden to the outside world. I am a patchwork of scars and donor sites. I recently ran across a Polaroid picture of the burns to my bottom when I was in hospital and it looks like a red heart. Humor is important in dealing with my burns.

Sandra Yovino is the nurse manager at Leon S Peters Burn Center at Community Regional Medical Center in Fresno, California.

Sandra: Luis’ personality lights up a room, he attracts people to him with his mannerisms and his charisma. I’ve gotten to watch his process over the 10 years since his injury. You know, there’s a false belief among many that the healing takes place in the inpatient phase or the outpatient phase. The truth is, the real work starts when patients are discharged from the hospital, when they start dealing with things like pain management, chronic pain, adjusting to a new lifestyle or career, or adapting to their previous work. With all my work with burn survivors over the years, I have also noticed that the milestone marked by each decade or life event can trigger important new issues for survivors to deal with. For instance, I have watched Luis successfully navigate endings of relationships, disappointments at work, and children transitioning to teenagers. These events bring up new challenges in anyone’s life. I’ve watched Luis transition through all these phases.
James: Luis, tell me about your amazing journey from this major burn injury and  amputation to full-duty firefighter with no accommodations.

Luis: When I first went back I was on light duty, mostly doing fire prevention work. I was determined to pass the manipulative and physical tests required as a firefighter, and return to full duty.  There was a new fire academy starting, so I joined the new recruits and went through all the trainings with them. These were classes that I used to teach! I became a student again to relearn my skills. I was determined not to return to work if I was going to get hurt or if I was going to hurt others.

I also went to the gym everyday. I worked with my prosthetist and my occupational therapist to find the best type of hook for my arm. I learned new ways to do old tasks, like screwing on a fire hose coupling or operating the Jaws of Life. It was actually fun for me to figure out new ways to do things. There were days I would get frustrated, but our job is about challenges and pushing ourselves to find solutions. My coworkers would get involved and make suggestions, too. They were amazing. They would joke about me having a rope burn on my hook after a training exercise, and they would put a Band-aid on the hook and keep going.

I passed everything. The media was there that day filming. A year later I was promoted to engineer, and when we opened a new fire station, I was promoted to captain. I was a fire captain for 10 years with no restrictions or limitations on an engine company. I also teach at several local fire academies, and whether it was confined-space rescue or sliding down a fire hose from a second-story window, I always demonstrate first for my students. Now, I’m proud to be on this new venture as Division Chief, with the new challenge of handling the administrative side of the fire service.

James: Describe what your life is like today.

Luis: My life today…I am a very blessed individual. The three things I am most grateful for are to be able to continue to do the job I love, to be an example for my kids, and to help others. I not only had the motivation to come back to work but to continue accomplishing all the short- and long-term goals I had set for myself long ago. I am blessed to have survived this trauma so that I could have the privilege to raise my children and watch them grow and succeed in all their endeavors.

I would describe my view on life now as more synergistic. I’m not as task oriented or “one-minded,” so I’m more able to see how others around me are experiencing their lives. I think I understand better what people need, and not just those that have been through traumatic events, but everyone I am connected to. This means becoming interested in what others are going through and talking more deeply with them. I take the time to share my knowledge and experience. If I notice someone is off or having a bad day at work, I
take the time to find out what is bothering them.

I saw a man at the gym about 6 months ago, an older man in a wheelchair who perhaps had had a stroke. I noticed him over the months, and then one day he came in with a cane. I took the time to go up to him and tell him how good he was looking. He told me that watching me work out at the gym had been motivating for his rehabilitation. We had a great talk, an amazing connection.

Sandra: Luis has become an important member of our burn team. He is always available to us. He really does give of himself freely. Luis stayed involved with the burn center at first because of his continual needs with his amputation. An important point is that Luis is a person who will seek out help. It is sad that a lot of survivors never deal with their burn injury. Luis did. He started dealing with some of the more core emotional issues about 5 years after the injury. He then became a Phoenix SOAR trainer at the hospital and got connected to Phoenix World Burn Congress. Phoenix WBC really helped him look at the emotional side. He took his younger daughter with him last year, and I think this was an important step for the family’s healing.

Recently, during a visit as a Phoenix SOAR peer supporter, Luis came in to support another burn survivor who was about to have his arm amputated. He shared his story so this patient might be able to imagine life after his amputation by meeting Luis. Luis was able to talk to this guy about acceptance of his amputation. As clinicians, we just can’t do this. It is vital to have survivors as trained peer supporters on the burn team.

James: Luis, do you have any advice for other firefighters injured on the job, burn survivors, or individuals who have lost a limb?

Luis: Continue to work hard with the passion that you have. Set your own limitations; don’t let any other individual set your limits for you. Stay true to yourself, and only do something if you have a passion for it. When you fall down, get back up. Train hard and work hard. Remember that the sky is not the limit—you are.

James: What is the biggest “gift” of this experience?

Luis: Having the ability to reach out to others. I believe my experience is a part of God’s plan for me to help. I am constantly being called on to inspire others in similar circumstances; it is a pleasure never a burden. I walk away feeling good after I have talked to another amputee or burn survivor, or to a classroom of new recruits. Giving hope to others through my life experience and inspiring others through my story is what it’s all about.

I visited the burn center last month to meet a burn survivor who had lost his hand. He was worried he couldn’t do push-ups ever again. I said, “Push-ups, those are easy.” I took off my shirt and showed him how to do push-ups with a prosthetic and without it by utilizing
pillows. His face lit up. I felt so good afterwards because he felt good and I gave him hope.

Another experience that comes to mind happened about 3 months ago. A burn survivor was brought by the fire station. He also had an arm amputation. I demonstrated how to do simple tasks that we take for granted with and without a prosthetic. He wrote me that when he went home he tied his shoes. These are big victories. I let survivors know they can do whatever they want to do. When I see that my experience has had a positive impact and gives hope to at least 1 person, that makes it all worth it—that is the gift that I’m rewarded with.

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 a consultant.

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.

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.

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 3^rd 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.

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.

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.

Chris Gilyard Describes her Journey – “Walking Through Ashes”

Chris Gilyard, featured speaker at today’s World Burn Congress general session, uses the words “Walking Through the Ashes” to describe her burn injury experience and her journey through years of recovery.  Thirty five years ago, burned in an auto accident at the age of 17, she suffered 2nd and 3rd degree burns on 21% of her body, with her face having some of the deepest burns.

Chris explained that, although the physical pain and recovery in the burn center was intense, the emotional healing from her injuries was equally devastating.  She described how, upon first seeing her reflection in the mirror, she thought ” I don’t look like a girl anymore…..who is ever going to love me?”

Upon being discharged from the security of the burn center, Chris explained, she had no support groups, websites, camps, school or social reentry, or social skills training available. They simply weren’t available at that time.  She experienced the humiliation and pain of pointing, laughing, inappropriate questions, and hurtful comments.  And although her family was loving and highly supportive, they did not have the skills or resources to handle the difficulties of going out in public and responding to the reactions of others.

Chris stated, ” I felt so alone”.

Chris compared the available resources and assistance she had during her journey, and what she wouldn’t have done to have the resources that are offered by the Phoenix Society today, such as SOAR, for a peer supporter who has “been there” like she had; for social reentry skills, such as the Phoenix Society’s “Beyond Surviving:Tools for Thriving”, to help with going out in public; and for a school reentry program such as Phoenix Society’s Journey Back, to help with the challenges of returning to school.  Although she didn’t have these tools, Chris did rely upon the support of family, friends and therapy on her journey to recovery.

She described the breadth of her journey, including a pivotal point where another family member experienced a severe burn injury, and how this motivated her to pay it forward by becoming a Burn Support Representative at Regions Hospital Burn Center, in St. Paul, Minnesota.  She stated she learned  “the journey is much easier to do with someone by your side.”

Today, Chris is married with 2 sons and works in private practice as a Licensed Marriage Family Therapist in Minnesota, offering caring and healing for those struggling with burn and other types of trauma.

Phoenix Society for Burn Survivors continues to be the central hub for resources for everyone affected by burn injury, offering peer support – SOAR (Survivors Offering Assistance in Recovery), online learning courses, online support chat services, the Journey Back resource for school reentry, and many other educational tools and resources so that burn survivors and their families can live productive and fulfilling lives.  No one has to travel the road of recovery alone.  More information is available for these resources at http://www.phoenix-society.org.

Lionel and Joanna Crowther: Getting Through the Fire

Severely injured while battling a house fire in February 2007 in Winnipeg, Manitoba, Lionel Crowther was among 4 of the 6 firefighters trapped by a flashover, that made it out of the blaze alive.

Lionel and his wife, Joanna, were the featured speakers at today’s general session.  Their discussion  “Getting Through the Fire”, revealed their personal journey as a burn-injured firefighter and spouse, and the impact on the entire family.

A firefighter with the City of Winnipeg (Canada) Fire Department, Lionel was finally able to find the support he needed upon attending the Phoenix Society’s 2009 World Burn Congress in New York City.  He notes that he was looking for another firefighter at that point to ask “What did you do?”  By connecting with others in the firefighter community through the Phoenix Society, the healing started to come together.

Lionel and Joanna explained the journey from that initial “call” that forever changed their lives, to the different healing paths they each encountered, both as individuals and as a family.   Lionel discussed what they discovered as a participant with Phoenix Society’s peer support for firefighters. He stated, “we learned that every burn survivor is an individual, and every individual has to have their own path.”

Today’s general session attendees were able to gain insight as to the challenges of a burn survivor’s recovery experience, how that path is different for their significant other, and how burn injury impacts the dynamics of the  entire family.  The audience also learned the unique perspective of healing and support for burn-injured firefighters.  Lionel has been able to bring his own unique perspective to the Phoenix Society’s SOAR program, as he has been trained as a SOAR Peer Supporter for burn survivors and firefighter burn survivors.

“The Phoenix Society helped me realize I wasn’t a burn victim anymore and that I was a survivor. I became proud to be a survivor fire fighter, survivor husband, and survivor father.”

Since their recovery, Lionel, with Joanna’s support and guidance, has concentrated his studies and training on Fire Fighter Survival, in it’s many forms. He has been appointed as a Master Instructor with the International Association of Fire Fighters Fire Ground Survival Program, trainer for the Petzl EXO Escape System, and is the District Coordinator for the IAFF 13th District Burn Foundation Coordinator. Only through constant training and support, Lionel was able to return to the front line as an active firefighter.

Phoenix Society’s SOAR Training at WBC

Phoenix Society for Burn Survivors conducted multiple SOAR (Survivors Offering Assistance in Recovery) training sessions at this year’s World Burn Congress 2013.  Phoenix Society’s SOAR is a hospital-based program that provides the transforming power of peer support so that everyone affected by burn injury can make a complete recovery – and resume a productive and fulfilling life.

On Tuesday, October 8th Phoenix Society conducted a SOAR Instructor training class and welcomed Massachusetts General Hospital and Arkansas Children’s Hospital Burn Center’s newest instructors to the SOAR family!

Phoenix Society offers SOAR (Survivors Offering Assistance in Recovery) Instructor training at its World Burn Congress 2013

On Wednesday, October 9th, we held one of our largest Coordinator training classes to-date, with a broad attendance of hospitals & burn centers from across the country including:
– Rhode Island Hospital Burn Center / Hasbro Children’s Hospital
– Brigham & Women’s Hospital Burn Center
– Spaulding Rehabilitation Hospital
– UC San Diego Regional Burn Center
– University of Iowa Burn Center
– Oregon Burn Center
– University of Colorado Hospital Burn Center
– St. Barnabas Medical Center
– Grady Memorial Hospital Burn Center
– Shriners Hospitals For Children Galveston
– Calgary Firefighters Burn Treatment Center / Foothills Medical Center
– Tampa Bay Regional Burn Center
– Rhode Island Hospital
– Ohio State University Medical Center
– Community Regional Medical Center
– New York Presbyterian Hospital

We also welcome the volunteers who attended the SOAR Peer Supporter training on Wednesday, October 9th.  These peer supporters are based out of the following hospitals:
– Massachusetts General Hospital
– Brigham & Women’s Hospital Burn Center
– St. Barnabas Medical Center
– University of Michigan Health Systems
– Calgary Firefighters Burn Treatment Center /Foothills Medical Center
– University of Texas Medical Branch
– UC Davis Regional Burn Center
– Rhode Island Hospital Burn Center

Phoenix Society welcomes them to the program and the SOAR hospital network across the country! This training is part of the Phoenix Society’s ongoing commitment to provide peer support to burn survivors and their families as they recover from burn injury. The instructors, coordinators, and peer supporters are crucial roles in providing the peer support program for survivors and their loved ones. For more information on Phoenix Society’s SOAR program go to http://www.phoenix-society.org/programs/soar

SOAR Training at University of Colorado Hospital Burn Center

Phoenix Society’s SOAR (Survivors Offering Assistance in Recovery) trainers were in Colorado last week at the University of Colorado Hospital Burn Center conducting another Peer Support training for volunteers who are learning ways to offer support for those affected by burn injuries. See our gallery of pictures (below) taken at the training session which took place on August 17th.  Phoenix Society welcomes our newly trained Peer Supporters to the Phoenix Society’s SOAR team!

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

Lisa Donovan (Left) with UBelong participant

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

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

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

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

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

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

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

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

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

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

Thank You to All of Our Volunteers!

WBC volunteers assisting with registration

It is with deep appreciation that we are celebrating over 1,100 volunteers at the Phoenix Society as part of National Volunteer Week (April 21-27^th).  Our volunteers are those everyday people who do extraordinary things for us, and include burn survivors, family members, firefighters, healthcare professionals and people in the local communities.

Since our organization’s founding, volunteers have been a source of action, contribution and moving the cause of burn awareness and improved burn care forward.  You, our volunteers, are critically important to burn survivors and their families, because you make the programs at the Phoenix Society for Burn Survivors possible.  For those interested in volunteering for the Phoenix Society, additional information may be found at http://www.phoenix-society.org/waystogive/volunteer

What do our volunteers do and how do they support the Phoenix Society?  For starters, our volunteers fulfill some of our most fundamental roles in the programs we offer to support burn survivors and their families on the road to recovery.

–          SOAR Volunteers:  Over 900 volunteers serve our peer support program, SOAR (Survivors Offering Assistance in Recovery).  These volunteers are comprised of coordinators, trainers, and peer supporters, and deliver the transforming power of peer support for hospitalized burn survivors and their families, which is essential to complete recovery.  More professionals than ever are recognizing the impact of “talking to someone who has been there”.  Peer support volunteers help others to thrive again!

–          Phoenix Society’s World Burn Congress:  Over 250 volunteers come together to support our annual conference..  This life-changing event is touched by volunteers who may be participating in a Phoenix Society program for the first time and others that have returned year after year to participate in our conference.  Volunteer roles at World Burn Congress:

• Committees – a team of volunteers who work behind the scenes to coordinate all of the functions that produce Phoenix Society’s World Burn Congress.  This group coordinates everything from program sessions, media, hospitality / food, entertainment, transportation, silent auction, and the volunteer staff.
• “AV Seals” – a team of volunteers who organize and run all of the AV, lighting, and equipment for the entire conference.
• UBelong – a compassionate and caring group of burn care professionals, family members and burn survivors who volunteer to create a memorable experience for families, kids and young adults by delivering a session full of fun, social skill building and peer group interaction.
• General Support – “Many hands make light work”; and we need the many hands to distribute t-shirts, transport attendees, move boxes, run registration and all the other behind the scenes work to make the event run smoothly.

–          Phoenix Society Advocates: Our advocate volunteers are those individuals committed to influencing positive changes in their lives, their communities and in their selected governments by sharing their story.  They become that “voice” for burn survivors and families, to support national prevention initiatives.

–          General Phoenix Society support:  We continue to receive behind the scenes support for our organization through such terrific volunteers that help with general tasks such as preparing mailings, stuffing envelopes, or offering their specialized services such as writing and consulting. All the volunteers out there sharing Phoenix Society information, programs and resources to those who need to find it most.

–          Phoenix Society Board of Directors:  Our board is comprised of skilled volunteers with a vested interest in the burn community.  The Directors volunteer their time and contribute their skills and knowledge to assist and oversee the operations of the Phoenix Society.  The board includes survivors, family members of those with burn injuries, and many industry and corporation experts.

SOAR peer supporter volunteers attend a training session

35 years of providing services and  helping burn survivors everywhere get back to living -Phoenix Society continues to be a small staff with an inspiring base of volunteers across the country, whose enormous energy and commitment continue to support or efforts to ensure everyone affected by burn injury has the tools and resources they need to thrive again!

Phoenix Society would like to extend our heartfelt gratitude to all the individuals, organizations and supporters of the work we do.  Together, we can make these programs and resources available for anyone who is suffering from the affects of burn injury.

“No one is more cherished in this world than someone who lightens the burden of another.  Thank you.”  ~Author Unknown

Interested in volunteering? Go to our volunteer page on our website for more information!

Cyber Bullying: What is it? And What Can You Do?

Bullying is a term we are hearing more often in the media and schools.  As we are becoming more informed about bullying, the more we need to know about the types of bullying that you or your children may be exposed to.

Cyber bullying is a more recent form of bullying that is on the rise.  As the channels of communication such as social media, web, and texting have multiplied, so have the number of ways bully’s can reach their victims. The Phoenix Society for Burn Survivors has developed a resource to help explain bullying in more detail and give advice on what you can do to help prevent it, recognize it or address it if you see it.

Definition of Cyber bullying
Cyber bullying is bullying through email, instant messaging (IMing), chat room exchanges, Web site posts, or digital messages or images sent to a cellular phone (Kowalski et al. 2008). Cyber bullying, like traditional bullying, involves an imbalance of power, aggression, and a negative action that is often repeated.

Characteristics of Cyber Bullying:

• Anonymity: As bad as the person who is bullying face-to-face may be, he or she can be readily identified and potentially avoided. On the other hand, the person who cyber bullies is often anonymous. The target is left wondering who the cyber “bully” is, which can cause a great deal of stress.
• Accessibility: Most people who use traditional ways of bullying terrorize their victim at school, at work, on the school bus/ or walking to or from school, etc. Although bullying can happen elsewhere in the community, there is usually a standard period of time during which these children or adults have access to their targets. People who cyber bully can wreak havoc any time of the day or night.
• Punitive Fears: Targets of cyber bullying often do not report it because of: (1) fear of retribution from their tormentors, and (2) fear that their computer or phone privileges will be taken away. In the case of children/teens who cyber bully, adults’ responses to this behavior are often to remove the technology from a target – which in their eyes can be seen as punishment.
• Bystanders: Most traditional bullying episodes occur in the presence of other people who assume the role of bystanders or witnesses. Being a bystander in the cyber world is different in that they may receive and forward emails, view web pages, forward images sent to cell phones, etc. The number of bystanders in the cyber world can reach into the millions.
• Disinhibition: The anonymity afforded by the Internet can lead people to engage in behaviors that they might not do face-to-face. Ironically, it is their very anonymity that allows some individuals to bully at all.

Adapted from: Katy Pearson, content 2012

What You Can Do:

• Protect Yourself Keep your personal information private. Do not share passwords. Make your passwords easy to remember but difficult to guess (and do not use personal information, such as a phone number, in your password).
• “Search” Yourself: Find out what information about you is public. Do an internet search of your name in various forms.
• Stop, block and tell : If you are targeted by a cyberbully:
  • STOP!
    Don’t do anything. Take 5! to calm down.
  • Block!
    Block the cyberbully or limit all communications to those on your buddy list.
  • and Tell!
    Tell a trusted adult, you don’t have to face this alone.
    Report cyberbullying to wiredsafety.org
• Practice the Internet “Golden Rule”-
  • Start by making sure you are sending things to the right place, that it arrives and that the right person gets it.
  • Is it worth sending? Don’t waste peoples’ time or bandwidth with junk, chain e-mails and false rumors.
  • Proofread and spell-check your e-mails and make sure they know who you are.
  • Don’t attack others online, say anything that could be considered insulting or that is controversial.
  • Don’t forward other people’s e-mails without their permission or share their
    personal information.
  • Are you angry when you are writing this message?
  • Don’t reply to spam, even to ask to be removed from their mailing list.
  • How private is the message you are sending? Are you willing to have others read this message or forward it to others without your permission?
• You are accountable for your actions online/in the “virtual” world (just as in the “real” world). Do not allow bullying in any form, including cyber bulling.
• Step away from the computer! Before responding to something you encounter online, take a few minutes to calm yourself. Ask for support from a trusted adult.
• Be a part of the solution, not the problem. Never forward or share emails, photos, links, etc. which contain information that might cast a negative image of someone/something else. Don’t continue the negative dynamics public (by continuing an argument through email or texts, or retaliating). Don’t make the negative issues public (such as posting a negative message on a public website). Instead, report these negative messages to wiredsafety.org Help by using the technology instead of being controlled by it.
• If you witness cyber bullying, staying silent makes the problem worse! Silence, when others are being hurt, is not acceptable. Everyone can be safer online and offline when bullying is not tolerated.

Adapted from: Wired Kids, Inc. http://www.stopbullying.org/index.html

Additional Resources:
Cyber Bullying in the Digital Age by Robin K. Kowalski, Susan Limber and Patricia Agatston

Cyber-Safe Kids, Cyber-Savvy Teens: Helping Young People Use the Internet Safely and Responsibly by Nancy Willard

GaurdingKids.com, A Practical Guide to Keeping Kids Out of High-Tech Trouble, by Russell A. Sabella, Ph.D.

Center for Safe and Responsible Internet Use (includes information about bullying) http://www.embracecivility.org/

Laws (state and federal) which address bullying, harassment, and hazing:
http://www.violencepreventionworks.org/public/bullying_laws.page

Wird Kids, Inc.: Stop Cyberbullying: http://www.stopcyberbullying.org/

Wired Safety, Internet Safety and Help Group: http://wiredsafety.org

For more information, including additional documents and strategies for children, teens, and adults facing these situations, please visit the File Center in the Online Learning Management system.