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.

Phoenix Education Grant Recipient Pursuing Her Career in Physical Therapy

Rachel Anderson

Focus: Physical Therapy

Rachel’s experience overcoming adversity inspired her to pursue a career helping others do the same.

Rachel Anderson, burn survivor and PEG Scholarship recipient is focused on helping others overcome adversity.

Rachel Anderson, burn survivor and PEG Scholarship recipient is focused on helping others overcome adversity.

She received an educational grant from the Phoenix Society for Burn Survivors. AlloSource pledged an annual contribution to the Phoenix Society for Burn Survivors over 10 years to provide education grants for students like Rachel. She is a freshman at Lebanon Valley College in Annville, Pennsylvania. When she graduates from the rigorous six-year program, she will have a Doctorate in Physical Therapy.


This degree will allow me to help those who are going through the same thing I did,” she said. “In my future, I want help kids who need physical therapy. My life goal is to be a role model and show others that nothing can stop you.”

While in high school, Rachel excelled on and off the field. She graduated with a strong academic record and served as the captain of her high school’s lacrosse and cross-country teams.

In addition to being named Most Courageous Athlete and Most Courageous Runner, Rachel made the Athletic Director’s All-Academic Team and All-Scholastic Team.

Rachel also focused much of her energy on community service. She participated in mission trips, volunteered in soup kitchens, and did volunteer work at the Ephrata Community Hospital and Schreiber Pediatric Rehab Center.

My burn injury has shaped me in many ways,” Rachel said. “I believe I am a better person today because of it. This journey has taught me so much. I also believe that I am a more caring person because of my burn injury. So many people helped care for me; I have confidence that it’s my job to do the same.”

Rachel is grateful for the support of her family and friends. She is looking forward to a career that will allow her to provide her own unique perspective to patients going through physical therapy.

Story contributed  with permission by AlloSource, one of the nation’s largest non-profit providers of skin, bone, and soft tissue allografts for use in surgical procedures and the world’s largest processor of cellular bone allografts.  AlloSource has pledged a 10-year gift to support Phoenix Society’s Phoenix Education Grant program for burn survivor students pursuing their post-secondary education.  AlloSource blog:


Positive Self-Talk: What Does it Mean, and How Do I Learn How To Do It or Make Sure That I Am Doing It Right?

By: Carla S. Oliver, MSW, CCLS

Self-talk is the talk that we do in our own heads about ourselves and the things that happen in our world. In other words, it’s like our own “running commentary” on our lives. Many times, this self-talk happens so automatically and unconsciously that we aren’t even aware of it. However, what we say to ourselves can have an enormous impact on the way that we feel, and on what we can achieve. Positive self-talk can act like an internal coach – by boosting our confidence, by helping us to believe in ourselves, and by encouraging and motivating us to achieve our goals.

The Power of Positive Affirmations

OLYMPUS DIGITAL CAMERAFor many years, sports psychologists have recognized the importance of positive self-talk in helping athletes achieve their fullest potential. Everyone who plays a competitive sport or who competes at a serious level faces tough times and obstacles to success: pain (physical and mental), less than perfect conditions, challenging opponents, fatigue, and exhaustion. The only way an athlete can be successful when facing these difficult situations is to have powerful self-belief and great determination. Positive self-talk is one tool that athletes use to achieve their very best in competition.

The concept is far from new. Those of you who are old enough may recall Stuart Smalley, a Saturday Night Live (SNL) character from the early 1990s. Stuart was a goofy character who became well known for his “Daily Affirmations” bit each week.  He had lots of catch phrases, but the most well known that we heard as he stood in front of his mirror in each episode was, “I’m good enough, I’m smart enough, and, doggone it, people like me.”

Despite the fact that Stuart was a character in a silly SNL skit, he was truly onto something. Positive affirmations affect our attitude. Our attitude, which can be greatly assisted by reminding ourselves of the positives, truly determines the direction in which our lives go. I have seen this over and over again throughout my personal life, and even more throughout my professional life. In my 20-plus years as a child life specialist, I have seen that the outcomes for people who have a positive outlook are largely successful, while those who have a more negative outlook seem to struggle from one problem to the next.

In the book The Power of TED (The Empowerment Dynamic) by David Emerald, the validity of this concept is demonstrated. In a “fable,” we are introduced to a man who finds himself wallowing in self-pity for all that is wrong in his life (death of a parent; infertility, leading to divorce, etc.,). Every aspect of his life is hurting him, causing him to feel alone and full of self-pity. Then he meets Ted, a man who helps him learn how to become a “creator” (defined in the book to be the complete opposite of victim.) The simplified premise is that it easier for us to become “victims” to all that is wrong in our lives rather than to create solutions that will empower us to realize positive outcomes.

Moving From Victim to Survivor

The use of the word “victim” in the book was striking to me. It is a word that many years ago I would have used to describe anyone who had sustained a burn injury or any trauma. However, when I started my career in burns more than 15 years ago, I immediately discovered that the children and families I encountered were far from victims,—they were survivors. This simple, yet important, distinction is what I would like you to use as you continue to read this article. We are not victims. We are survivors.

Beyond Surviving: Tools for Thriving

As you access Phoenix Society resources, you will notice that the concept of “self-talk” is discussed in many of them. That includes the social skills training program, Beyond Surviving: Tools for Thriving, one of the Phoenix Society’s new Online Learning courses. Developed by Barbara Kammerer Quayle, it teaches the use of two important tools: STEPS, for achieving social comfort and confidence, and Rehearse Your Responses (RYR), for responding to awkward questions, uncomfortable social situation, or bullying. Both STEPS and RYR require a pause to think before speaking. RYR requires you to remind yourself, “I can handle this easily and confidently.” STEPS begins with positive self-talk, such as “I love and accept myself the way I am and the way I am not,” and results in a realization that when faced with a challenge, “I can do it!”

But, what if we can’t think of anything positive?  What if we have beaten ourselves up so much that our self-talk is more like an internal bully? Instead of lifting us up, it undermines and criticizes us. This is when we must make ourselves work at changing our self-talk.

For many adults and adolescents, this is easier said than done. If we have spent our lives focused on all that is wrong with us, all the things we aren’t good at, how do we retrain ourselves to change?

In children, this might come easier. As we know, some children show resiliency after experiencing difficult situations. However, in my years of working with kids I have found that this really has more to do with someone’s temperament and personality rather than age.

I remember reading an article in 2011 about Sarah Bazey, a burn survivor who made the decision that she would not let her scars define her life. The authors described an extremely poignant moment in her life (a short time after her discharge from the burn center and right after a tough day of therapy) when she completely broke down: “She allowed herself 30 minutes to pity all that wasn’t in her life. Thirty minutes of pure bitterness, sadness, hurt, anger, and tears. And then…hope again. After all, what had always been a part of her life in the first place was a positive attitude. ‘I can do this’ was a refrain all too familiar to her. It was time to echo that conviction again.” Sarah’s positive self-talk played a key role in her recovery.

Continue reading here

Carla S. Oliver, MSW, CCLS, is the manager of the therapeutic recreation/child life department at Children’s Hospital Colorado. She has practiced in the field of child life for more than 20 years, with the majority of her career dedicated to working with pediatric burn survivors and their families. Carla is a member of the mental health team for the World Burn Congress, where she has also co-presented the parent workshop for 4 years. She will be presenting the workshop at WBC 2013. Carla is also president-elect of the Child Life Council effective May 2013.

Congratulations to Amy Acton for Receiving Curtis P. Artz Award

Amy Acton recieving Curtis P. Artz award at the ABA conference in Palm Springs, CA

Amy Acton receiving Curtis P. Artz award at the ABA Conference in Palm Springs, CA

Congratulations to our Executive Director, Amy Acton, who was awarded the Curtis P. Artz Distinguished Service Award this week while the Phoenix Society staff attended the ABA Conference in Palm Springs, California! Amy was recognized for her dedication throughout her career to advocating for the expansion of burn recovery services and resources for those impacted by burn injury and their loved ones.

Amy’s career in burn care started at the Spectrum Health Regional Burn Center, located in Grand Rapids, MI,  as a burn nurse and nurse manager.  In 1998, she joined the Phoenix Society, which then relocated to Grand Rapids, and joined its mission as the only national non-profit organization of its kind helping those impacted by burn injuries meet their challenges with the community support and tools they need to thrive again.  She, along with the dedicated staff and volunteers of the Phoenix Society, has developed several national programs that have greatly increased accessibility to long-term recovery resources for those in the burn community.

Amy has been instrumental in refining the organization’s mission and building strong partnerships to build and expand programming which includes World Burn Congress, an international conference for burn survivors, their families and friends, fire services and medical professionals; a peer support program now in over 56 burn centers; and a thriving advocacy program to add the survivors voice to burn prevention issues. She is a member of the National Fire Protection Association Board of Directors and also serves on the Board of the Home Fire Sprinkler Coalition.

This award is presented annually to a non-physician member of the American Burn Association for his/her outstanding contributions in the burn field. This award memorializes Dr. Curtis P. Artz for his lifelong dedication to the well being of the burn patient and the support of all others who could contribute to that goal in the patient-center, clinical, and research spheres.

Where Are They Now? 2002 PEG Recipient Ryan Douglas

-2Ryan Douglas, one of the first Phoenix Education Grant (PEG) scholarship recipients, has used the scholarship as a motivating and driving force throughout his undergrad college experience and during his early employment career.  Ryan continues to use that same motivation today, while he continues to grow his family, with his wife and two children in Austin, Texas, and studies to earn an Executive MBA from Baylor University.  His story is an inspiration in the burn community and one that the Phoenix Society for Burn Survivors is proud to be a part of.

The PEG scholarship was a big boost for Ryan’s confidence going into college. Knowing he had support, not just financially, but having an organization that believed in him and his aspirations enough to award him that scholarship, was something he did not take lightly. It motivated him to keep pushing forward toward his ultimate goal of giving back to those that gave him so much. Ryan begins each day with the goal of living up to the qualifications of a PEG recipient. 

Ryan explained that he faced the same challenges that every college student faces; meeting new people, establishing oneself after leaving home, and learning to become your own person.  But he stated, “I didn’t want my burn injury to define me”, and he found that being open and honest about his experience, helped him break the ice and make new friends.

Ryan believes that the Phoenix Society’s support through the PEG Scholarship helped him focus on his goals and develop his sense of personal direction.  He also explained how his experiences at Camp Cheley and conversations with Barbara Kammer-Quayle, former Phoenix Society Board member and PEG founder, helped him find the value in himself, as well as a passion for wanting to help others. His experience at Camp Cheley inspired his interest in youth development, and he eventually became a camp counselor at Camp Cheley.

-1Ryan is now the Operations Director for the Austin Rowing Club (ARC) in Austin, Texas. He currently manages the entire ARC staff and works to build the organization and its mission. He and his wife, Reeti, have one son, Naveen, and have recently welcomed a daughter, Layla Rani, into their family. He described his everyday life as, “very busy –  but it’s all good things!”

His future plans after finishing his MBA are somewhat up in the air right now, but he would love to advance in his current organization, and continue to pursue a career in non-profit administration. He is also looking forward to seeing his children and family grow. Although Ryan doesn’t have a lot of spare time, when he does, he enjoys spending time with his family hiking and camping, traveling, and enjoys playing the guitar.

His advice for any future PEG applicant is to not take it lightly.

“It is a great opportunity and applicants should take it serious and be professional. Take your time to fill out the entire application, using good punctuation and vocabulary and have someone proofread your answers. “

Ryan advises applicants to not rely on their burn injuries to automatically earn them the scholarship. He encourages applicants to be honest and direct about who you are. Ryan knew when he was applying that he wasn’t an amazing student, but he knew he had a drive and direction, so his responses on the application were up front.

His advice for recent recipients:  “Move forward with the opportunity and take it seriously. Also  remember that you’re not alone.  The Phoenix Society supports you and believes in you”.

As for new college students with burn injuries getting ready to enter college, Ryan advises, “Go about and experience every day and campus life.  Don’t let the injury define you, rather use it as an opportunity as a conversation starter and tell your story.  Being honest is the best strategy and that can help develop your self-confidence.”

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.

Join The Phoenix Society in Sharing the Message: Burn Awareness Week 2013

As part of Burn Awareness Week 2013, the Phoenix Society for Burn Survivors looks to increase awareness of the impact of burn injuries.

We want to be sure that every person that receives a burn injury is aware of the programs and support we have available for them. The success in delivering these resources to those in need can be greatly improved by your assistance in getting the message out and letting people know we are here! 

Ways to help:

–          Connect with us on Facebook and Twitter.  Just sign in and “like” our page at or visit our Twitter page at and click “Follow”.

–          You can also subscribe to our WordPress blog at    by clicking the “Follow” tab located at the lower left hand corner.

–          You can share videos from our Vimeo page by going to and clicking on the “Follow” tab then clicking the “Share” icon located on each video.


Phoenix Society for Burn Survivors: Public Awareness from Phoenix Society on Vimeo.

–          Click and select “share” to forward the message of hope and support that is available to the burn community.

–          Encourage anyone you know affected by burn injury to visit our website at

–          Encourage those looking for information or tools to join our online community and register for online learning at

Thousands are affected by burn injuries every year.  In 2011, over 450,000 people suffered burn injuries, and of those, approximately 90,000 of those were children under the age of 14.  Yet we also know that thousands are unaware of the resources that are available to help with the process of recovery from burn injury and trauma.

For 35 years, the Phoenix Society has been connecting burn survivors, their loved ones, and burn care professionals with valuable resources and a support network. 

Burn injury not only affects the injured, but the families who love and support that person. We also know that the recovery process is a lengthy one, and continues – long after release from the hospital. 

Phoenix Society for Burn Survivors: Your Impact from Phoenix Society on Vimeo.

For these reasons, we have made a focused effort to make available resources targeting not only the survivor, but spouses, children, siblings, healthcare professionals, first responders and others who are involved in the recovery process.

Other important ways to help; you can help welcome a survivor back to their community after a burn injury by following these simple steps:

  1.  Look us in the eye
  2. Smile
  3. And say “hello”

Nothing heals people like other people.

Finding My Valentine: A Burn Survivor’s Love Story

John Capanna is a burn survivor and volunteer for the Phoenix Society

by John Capanna

Filled with cards, candy, flowers, other gifts and hopefully love, Valentine’s Day is by all intents and purposes supposed to be a happy day for couples.

But for some, this annual romantic celebration can be a sad reminder that they look different and that they think no one will ever accept them, let alone love them.

I felt much the same way after my burns.

I was burned over 90 percent of my body in an oil refinery explosion when I was just 20 years old. The greatest damage was to my face; I lost both ears, part of my nose and had to have my entire face reconstructed. I was hopeless back then, but as I said to someone the other day at a burn survivor group at our local burn unit at Lehigh Valley Hospital, “We’ve been in recovery from our burns for many years (33 years for me) — we can see the light at the end of the tunnel, because we’ve been through the tunnel.”

The struggle is that most newly burned people can’t even imagine the light exists; that it will ever get better. The scars become the focal point and we fear rejection. I’ve learned that it doesn’t matter where your scars are on your body or what ‘beauty’ you may have been left with. I’m no authority by any measure on love or relationships, so I’m just sharing what I have experienced in the last 33 years.

I had a couple of different women that I dated when I was injured, and for whatever reason those relationships didn’t last. I met a physical therapist that I dated, and a candy striper that I went on a date with, and this was all within two years of my burns — and I still had extensive facial reconstruction that needed to be done. I’m not going to say I wasn’t self conscious. I was and still am sometimes. I’m not sure I know anyone who isn’t from time to time – non burn survivors included.

In 1983, I met a beautiful, energetic young woman named Sonya. We had fun together and connected on a level that felt really good. We eventually went our separate ways mainly because of my ongoing struggle with narcotics dependency — the result of constant pain-killers taken during my ordeal. I soon met and married someone else. But ours was not a healthy relationship as we both had our share of unresolved issues and growing up to do. We had two children together, separated in 1991 and divorced in 1997.

I finally found my way to getting off of the pain medicine completely in 1996 and I’ve been clean ever since.

John Capanna and Sonya Fellows attended the Phoenix Society's 2011 World Burn Congress in Cincinnati!

One day, I was asked to travel to the Pocono Mountains in Pennsylvania (I lived in NJ at the time) to share my story with some other people in recovery. It was January 2002, almost a year after I gained custody of my two children. I stepped into the building where the gathering was to be held, and headed for the bathroom so I could prepare to share my story, when I heard a voice behind me.

“I’ve been waiting for you for years.”

I turned around and was completely flabbergasted. I just couldn’t believe that over 18 years later, Sonya was standing in front of me at this obscure town that I didn’t even know existed, over 100 miles from where we both lived. All those years faded away and it felt like it did back then. A little electricity. A spiritual connection. A few months later, we started seeing each other again and eventually I asked her to marry me.

I didn’t think my first wife loved me, because though she seemed to be able to see past the scars on the outside, I don’t believe she ever really saw me. Sonya sees me and she gets me. She accepts me and loves me. Is it always wonderful? No.  In fact, we are really just getting started on our relationship and romance. We’ve been focused on raising the kids and getting them set up with life, moving, business, and my involvement in the burn community and just everyday life.

But I’ve found that if I really want a good relationship, I need to make time for it and I have to participate. It involves more than cards, flowers and the occasional dinner out. It takes guts to stay committed to a relationship long term. What I feared the most was the intimacy and vulnerability — not something most guys (and many women) are very good at. But I’ve gotten better at it. I enjoy our life together and we enjoy each other.

“I’ve learned that my scars weed out the ‘phonies’ in life … “

Sonya and I have been very fortunate to have another chance to come back together as adults and find out who we really are, both separately and together. We try and support each other and give each other the kindness that engenders love. It’s not always easy and we both fall short but we keep on trying and that is the most important part — just keep at it and don’t give up!

It is my sincere wish that everyone who reads this finds happiness within themselves and shares that with someone else some day. In the meantime, just remember: if someone can’t love you today because you look different, they probably wouldn’t have been able to love you before your burns.

I’ve learned that my scars weed out the “phonies” in life and what I end up with is the most genuine and authentic people on this earth surrounding me.

Happy Valentine’s day to everyone, because self love is where real love begins. You don’t have to be in a relationship to work on self love. So buy yourself a box of candy and some flowers, and if no one else tells you that they love you, or even if they do, find a mirror and tell yourself.

Related Resources: Intimacy and Sexuality after a Burn Injury
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