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.

Nevarez-family

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.

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.

Phoenix Society Members Call to Action! Notify Your Legislators

The Phoenix Society is asking all of its supporters to notify their legislators both of the House and Senate to voice concern about a provision in the bill passed by the House Federal Agriculture Reform and Risk Management Act (H.R. 2642).

The U.S. House of Representatives Farm Bill (H.R. 2642) contains an amendment that would have sweeping effects over the agriculture industry, including the tobacco industry. This amendment has the potential to nullify the important fire-safe cigarette legislation enacted in all 50 states that has significantly helped to reduce fires and related burn injuries.

WE ENCOURAGE YOU TO: contact your own House Representative and Senator as soon as possible to voice your concern about the bill passed by the House HR 2642, specifically Sec. 11312 of the House Bill which has the potential to overturn fire-safe cigarette laws approved by all 50 states in our nation.  We need you to request the removal of this this portion the House Bill.  The message is simple we do not want to lose the gains we have made in decreasing burn injury and death due to cigarette fires in America.

You can find your U.S. Representative and U.S. Senator at www.house.gov or www.senate.gov

You may also want to send your thoughts to these Agriculture Committee members:

The Honorable Debbie Stabenow
Chair, Senate Committee on Agriculture,
Nutrition & Forestry
328A Russell Senate Office Building
Washington, DC 20510
For email:
http://www.stabenow.senate.gov/?p=contact

The Honorable Frank Lucas
Chair, House Committee on Agriculture
1301 Longworth House Office Building
Washington, DC 20515
For email:
https://lucas.house.gov/contact-me/email-me

The Honorable Thad Cochran
Ranking Member, Senate Committee on Agriculture, Nutrition & Forestry
113 Dirksen Senate Office Building
Washington, DC 20510
For email:
http://www.cochran.senate.gov/public/index.cfm/email-me

The Honorable Collin Peterson
Ranking Member, House Committee on Agriculture
2109 Rayburn House Office Building
Washington, DC 20515
For email:
https://collinpeterson.house.gov/contact-me/email-me

Attached is a letter on behalf of the nation’s fire and emergency services   including the Phoenix Society directed to the chairpersons of the Agricultural Committee currently working on resolving differences between the two versions of this bill.

Latest action on the Farm Act was on 8/1/2013 the Senate agreed to request for conference. Appointed conferees: Stabenow; Leahy; Harkin; Baucus; Brown; Klobuchar; Bennet; Cochran; Chambliss; Roberts; Boozman; Hoeven – these appointees will be working on resolving the differences between the House and Senate bill.  

Kristin Quinn Recieves Life Time Achievement Award

KristinQuinEach year there are countless volunteers who support and help us develop and deliver the life changing programs and services of the Phoenix Society.  Quite often our volunteers are also superstars at the local level too providing support and prevention programs.

Kristin Quinn is one of those valuable members of the burn community who has given of her time and talent to have a impact both locally and nationally within the burn commmunity.   She is currently a  Phoenix Society SOAR coordinator at University of Utah Hospital, recently participated in our SOAR Firefighter Summit in Phoenix, AZ and has been an active volunteer with our WBC UBelong program since its inception.

Join us in congratulating Kristin and our burn center friend Brad Wiggins and Fire Chief Ron Fife on receiving the Life Time Achievement Award from the American Red Cross of Utah today!  (Is it just me or do they look a little young to be receiving a “Life Time Achievement Award”? ) 

Read more about our SOAR program at www.phoenix-society.org/programs/soar  or our UBelong program for WBC 2013 at
www.phoenix-society.org/worldburncongress/youthandfamilyprogram/

Phoenix Society Joins Efforts to Prevent Tragedy through Fire Sprinkler Incentive Act

By:  Amy Acton

Executive Director, Phoenix Society for Burn Survivors

For the past week, our hearts have been with our friends who were impacted by The Station fire in West Warwick, RI as they prepared themselves for the 10th anniversary, and all of the emotions that would bring.

I attended the memorial Sunday where that tragedy took place, to honor the 100 people who lost their lives that day.  As I stood there,  I recognized so many familiar faces, and was reminded of the efforts of so many people over the last 10 years who have worked, and continue to work, to support this community.

Common Voices -DC 1-group - 02.20.13

The Phoenix Society has played a small part in assisting the healing along with countless other organizations and individuals.  Yet there is still so much to do.  Today we are in DC with our partner Common Voices, promoting the Fire Sprinkler Incentive Act to prevent future loss like those experienced in Rhode Island.  Rob Feeney, Phoenix Society Advocate, and others affected that night, have shifted their focus to be voices for change.

Common Voices - DC4 - Rob Feeney 2 - 02.20.13

The Phoenix Society joins Common Voices and other national fire service organizations, who are working with the House and Senate to reintroduce the Fire Sprinkler Incentive Act (FSIA) in the 113th Congress.  Join us and add your voice and help us to prevent another fire like the Station fire.  Visit  www.fireadvocates.org 

Phoenix Society at SOAR Firefighter Summit

by:  Pam Peterson

The Phoenix Society for Burn Survivors, International Association of Fire Fighters (IAFF) Charitable Foundation and National Fallen Firefighters Foundation (NFFF), and the University of Kentucky College of Social Work came together this past week to participate in a Firefighter Peer Support Summit, in Phoenix, AZ.

SOAR Summit - IAFF firefighter - unedited 01.30.13

Phoenix Society SOAR instructors, coordinators, and peer supporters, IAFF District Coordinators, Burn Foundations, and the NFFF were among those who took part in the discussion of peer support for the burn injured firefighter and their families.

During the two day summit, participants were introduced to the Phoenix Society’s SOAR program, the support needs of burn-injured firefighters and their families, as well as the firefighter specific components newly added to SOAR. Together we have developed goals for future work.  We began discussion about dissemination strategies and will continue this exploration at the meeting at the ABA.

SOAR Summit - Amy A 01.30.13

This exciting effort would not have been possible without the investment and interest of all of those individuals and organizations involved. We especially would like to extend our gratitude to the burn injured firefighters and spouses who participated in the focus groups and surveys that initially explored peer support as a resource for firefighters- they have provided the foundation on which this project has been built.  We would also like to thank everyone who participated in the summit to ensure access to peer support for anyone affected by a burn injury.

Talking to Children about Loss, Trauma and Traumatic Loss

Talking to Children about Loss, Trauma and Traumatic Loss

Megan Bronson PMHCNS-BC

  As parents we want to protect our children and we have difficulty seeing them sad or hurting. However, in order for children to heal after loss, trauma, sudden death and traumatic loss, they need to be able to express their feelings, have those feelings heard with compassion, and have their questions answered appropriately. The following are meant to be guidelines for parents and caregivers who are looking for some assistance in how to tell a child about a loss, sudden death, trauma or traumatic loss, how much to tell them and when to tell them. These guidelines need to be individualized to your child’s particular situation and also modified for their age, developmental stage, and individual capacity to hear about the details of a traumatic event and loss.

Blog Picture - Talking to Children about Loss Trauma

 To tell or not to tell: Choosing not to tell a child about a trauma or traumatic loss risks the child hearing about the event in an unsupported or even an insensitive manner, such as from an older child, the media, or gossip. The child may also overhear adult conversation that is confusing and perhaps intensely emotional from upset adults who are also impacted by the loss or trauma. Better that you, the parents or caregivers who know the child best set the tone, choose the place, and the context for informing the child. Another risk of not telling the child is that we risk losing the child’s trust when we withhold information from them that they need to make sense of a situation and their feelings. Children often feel lied to and betrayed when they are not provided timely information.

  1. Who should tell: It is best for the child to hear difficult news from a trusted caregiver   such as a parent, grandparent, aunt or uncle, older brother or sister as these will be   the people who will be having ongoing supportive contact with the child and can follow up with them.
  2. Setting the time and place: Choose a time that you are in control enough of your  own feelings so that you can focus on the needs of your child. It is fine for your child to see your tears, however, it is not beneficial for a child to have to end up comforting  a parent’s overwhelming emotion. Many children protect parents from their own grief  because they see that the parent is hurting and they do not want to add to that.  Choose a place that provides privacy so that your child doesn’t need to feel self conscious about expressing their feelings or tears.
  3. When and how to tell:  Because of the risk to trust and also the risk of the child hearing in an unsupported manner, it is better to inform the child as soon possible after the traumatic incident or loss in age appropriate, clear and simple  language.  Avoid providing too many details as this will overwhelm the child. An example of simple and clear information would be, “There was a bad accident, and Daddy was hurt so badly that they could not fix him and he died. We are all very hurt and sad and sometimes even mad and we will miss him very much.”  The truth spoken simply with kindness and compassion catalyzes the emotional healing process. Older children may be able to handle more details and will ask for them when they are ready. Allow children to express their feelings and to ask questions. Avoid judging feelings or trying to fix them–just hear them and respond to them with compassion and comfort.
  4. Plant the seeds for future discussions: “You may not feel like talking about this right now but when you are ready to talk or have more questions we can talk about how you feel and get answers to your questions when we are able to.”  Follow up with the child periodically to see if they have further questions or need to talk. Focused listening and physical comfort need not take large amounts of time but can be given even for fifteen or twenty minutes a day and have a profound impact on the child’s emotional healing.
  5. How many details should children hear? This depends on the age of the child, their individual and developmental readiness to process upsetting and particularly horrifying details. Ask yourself if the child really needs to know the details at this time or if this can wait until they are older and more able to process and integrate the details. Sometimes these details may not be appropriate to share until the child is in their late teens or young adulthood.
  6. Ways to help your child:
  • Avoid exposing children to television coverage of the traumatic event that          effected your family or coverage of any traumatic event
  •  Avoid having adult conversations about the traumatic event within                        earshot of the child
  • Find a support group for grieving children and families, such as Gilda’s Club,          Hospice,  Church, Community, or Hospital based Bereavement groups. You may      also choose to seek support from specialty groups such as cancer support            groups, burn survivor support groups, survivors of suicide or homicide,  a                  group for bereaved parents, (such as Compassionate Friends), etc. Contact the       community mental health agency in your area for available support groups.
  • Seek individual counseling as needed
  • Be aware of trauma symptoms in yourself and your child and seek professional help if these persist
  • Talk to the child’s teacher and school counselor and let them know what your           child is going through
  • Provide your child with paper, crayons, markers and other creative materials         such as play dough, fingerpaints and other expressive materials as these are natural and effective ways for children to express their feelings
  • Provide the child with outlets for their anger and frustration such as age                 appropriate physical activities
  • Take care of yourself–you deserve this and your child needs you

Excellent grief and trauma resources for Adults and Children:

www.compassionbooks.com

www.theselfesteemshop.com

www.dougy.org The Dougy Center: The National Center for Grieving Children and   Families

www.childtrauma.org Child Trauma Academy  Bruce Perry MD, PhD

www.trauma-pages.org David Baldwin PhD.Trauma Information

www.samhsa.gov/MentalHealth/Tips%20for%20Talking%20to%20Children%20in%20Trauma_LOW_RES.pdf