Burn Support Magazine
Transcription
Burn Support Magazine
Phoenix Burn Support M Burn Support Magazine Issue 3 2014 Magical Healing Experienced at Phoenix WBC Lasers and Burn Scars: An Exciting New Era in Burn Reconstruction | 11 Exploring Mind-Body Practices to Complement Traditional Healthcare | 12 Self-Compassion: What It Is, How It Can Help | 18 2 Magical Healing Experienced at Phoenix WBC in Anaheim By Kathryn Edwards In the shadow of Disneyland’s magic kingdom, participants at the 26th annual Phoenix World Burn Congress experienced the magical healing that occurs when burn survivors come together to share their stories. The largest Phoenix World Burn Congress to date, this year’s event drew 1,038 survivors, their loved ones, health care professionals, and firefighters to Anaheim, California. In addition to the main program for adults, Phoenix WBC again included a Phoenix UBelong workshop for children under the age of 18, a young adult workshop for those 18-25 years old, and a workshop for parents who are burn survivors or have children who survived a burn injury (see story, p. 5). Beginning With a Time for Reflection On the evening of October 22, a record number of attendees joined members of the fire service and Phoenix WBC volunteers for the annual Walk of Remembrance, an event prior to the official kickoff that has become a Phoenix World Burn Congress tradition. “Today we are honoring those who we have lost and the losses we have all experienced collectively from the impact of fire and burns,” explained Phoenix Society Executive Director Amy Acton. The solemn, but powerful, event gave participants an opportunity for reflection before the official opening ceremonies the following morning. However, it also concluded with a message of hope. Upon completing the walk from the Hilton Anaheim to the city’s convention center, participants learned that the Phoenix Society for Burn Survivors would be joining Project Paradigm, a private foundation, and the American Red Cross in launching a national effort to prevent burn injuries and deaths from home fires. The inaugural Paradigm Youth Challenge will inspire youth to take an active role to work collaboratively to address this important social problem. Amy urged those present to add their voices to this national effort and to engage the youth in their communities to help find innovative ways to reduce the number of Americans losing their lives in home fires each day. “Our belief,” she said, “is that if we actively engage our youth today we will live in a safer world tomorrow.” Choosing “Aliveness” Over “Woundedness” Opening the first session at the Congress, Justina Page talked about the many ways a burn injury creates a change in plans. “I wasn’t planning on being a burn survivor. It just happened,” she said. Justina shared the story of how she was burned and lost one of her 22-month old twins in a house fire. She experienced some dark days, but found a way to recover and reconnect with life. She went on to become a peer support volunteer at the hospital and an advocate for fire sprinkler systems. She created a nonprofit organization named after the son she lost. The Amos House of Faith provides support for children and families who have experienced burn trauma. She encouraged the audience to “use every difficult change in your life as a stepping stone to success.” Mark Nepo, cancer survivor, philosopher, and poet, spoke about the journey of inner transformation in his keynote address. The word “vulnerable,” he said, means “to carry a wound gracefully.” We’ve all done that, he remarked. “Some crisis or loss comes to undo us until we are broken open.” Speaking of his experience with cancer, Mark shared his belief that “sharing pain is the only way to stay alive. We are more together than alone.” Whether from injury, illness, or the death of a loved one, he explained, each of us is asked to assume the courage to choose “aliveness” over “woundedness.” Keynote speaker Mark Nepo “It takes courage to give up what no longer works, in order to stay close to what is sacred,” said Mark, who concluded by suggesting, “When you’re lost, look for the teacher next to you in each moment.” Phoenix Burn Support Magazine | 2 | Issue 3 2014 Robert David Hall, accompanied by his wife, Judith, concludes his presentation with a song. Actor Robert David Hall, best known for his role as the coroner in the television series CSI: Crime Scene Investigation, shared a brief version of the story of his burn injury, then focused on gratitude and humor as the key ingredients for healing. He expressed his gratitude for his family, friends, and each of the nurses who treated him in the hospital. Hall read excerpts from a journal he kept during his recovery. The entry about his accident is poignant, yet laced with humor: In that moment I saw Jesus and thought he had come to take me home. And in case you’re wondering, Jesus really does look like Greg Allman when he was married to Cher. Even while telling the most dramatic aspects of a severe burn injury that resulted in amputation of both legs, the actor kept the audience laughing and hanging on the edge of their seats. His humorous, upbeat message demonstrated the courageous positive attitude that helped him make a successful recovery and rebuild his life. “If you’re at a low ebb in your life, help someone else,” he explained. Hall concluded his message by singing “It Just Is,” a song about his injury that he played on his guitar while his wife accompanied him on bass. Finding a Sense of Community Attendees found inspiration not only from the keynote speakers but from the many opportunities they had in workshops, breakout sessions, open mic, and discussion groups. Young Adults enjoying their outing at Knott’s Berry Farm. a similar path. The two are an example of what has grown the event over the course of its 26-year history. Attendees who experience Phoenix WBC as a life-changing event often return home eager to share their experiences and encourage others to join them at a future Congress. Both Laura and her friend were already making plans to share their new insights with other burn survivors. Laura Jacobs, from Antigua, West Indies, summed up the feelings shared by many, saying, “I’m amazed at the love and caring survivors show each other. When I was in the hospital, having a visit from another survivor gave me hope. I want to bring that hope to other people in my country.” Patt Lindsey, who was burned as a child in 1945, was one of the more than 450 first-time attendees. Patt also participated in the Phoenix SOAR® training held prior to the Congress. The Phoenix Survivors Offering Assistance in Recovery® program provided her with the skills she will need as a peer supporter in a hospital in Galveston, Texas. Laura, who was attending her second “World Burn” this year, brought another burn survivor from Antigua to experience the magic of meeting others who’ve traveled “Even people that aren’t burned should do things like this,” Patt said with a smile. “Sometimes you just need to get together and talk with people and connect. I feel I’ve Phoenix Burn Support Magazine | 3 | Issue 2 2014 come full circle, coming back to volunteer in the hospital where I was treated so long ago.” Laura Borth from Weymouth, Massachusetts, attended the young adult workshop. The thing she liked most about this year’s conference was being around people her own age who have had a similar experience. “It’s interesting to hear how other people cope and what it’s like to grow up with burns,” she said. Becoming a Collective Story of Hope “The purpose of our coming together is to provide hope,” Society Executive Director Amy Acton explained to Phoenix WBC attendees as the event concluded. “We tell our stories, and through our stories, we learn that we are not alone. You are part of a collective story of hope and helping people move on with life after a burn injury.” At the closing ceremony, yoga instructor Blake Tedder and some of the children from UBelong demonstrated the yoga poses they had learned throughout the week. Blake and several young volunteers led the audience in an activity called “balloon breath.” Each person in the audience inhaled, then blew their troubles out into an imaginary balloon. After three rounds of inhaling and exhaling, the imaginary balloons, which had become quite large, along with the troubles they held, were simultaneously released. The gathering ended with a triumphant drum circle led by Upbeat Drum Circle. Participants played hand drums, rattled shakers, and formed a spontaneous, celebratory chorus line that snaked around the room. As participants filed out of the event, the wife of a burn survivor explained to the woman next to her, “This conference helped us look at my husband’s injury differently. It was amazing to meet so many people who have been through something similar. It gives us hope.” Indeed, we told our stories and through our stories we learned that we are not alone. Thank You A triumphant drum circle wraps up Phoenix WBC in Anaheim. to Our 2014 Phoenix World Burn Congress Sponsors This year’s program was our largest ever—179 sponsoring individuals and organizations truly extended themselves and provided the funding needing to meet this growth. Thank you for providing healing, hope, and a connection to a national burn community! Lead Sponsors: Visit www.phoenix-society.org/wbc/sponsors for complete listing Phoenix Burn Support Magazine | 4 | Issue 3 2014 Youth, Family Programming Focuses on Connection, Support, Being Who You Are Child- and family-specific programming again played an important role in this year’s Phoenix World Burn Congress. The growing popularity of these programs quickly became evident this year when Phoenix UBelong for kids and teens and the young adult workshop, as well as the onsite childcare, sold out despite an increase in capacity of 30% over previous years. Moviemaking Sets the Scene for Phoenix UBelong for Kids and Teens Phoenix UBelong includes a 3-day program, held each year in conjunction with the Phoenix World Burn Congress, that is specifically designed for 7- to 17-yearolds who are either burn survivors themselves or who have a sibling or parent who has experienced a burn injury. The group started each morning this year with yoga, breathing, stretching, and basic meditation to provide the young participants with a calm, focused start to each day, as well as techniques that they could take home. They then broke into small teams to try their hands at movie-making, using stop-gap animation, with the help of a team from IncrediFlix, a Californiabased organization that specializes in providing kids with hands-on film experience. The activity gave the young participants a taste of the Hollywood scene and encouraged teamwork among groups of peers. The older teens in the program used a walk to a nearby Joe’s Italian Ice to practice their social skills while ordering a delicious treat. They also spent time with young adult mentors from the Phoenix WBC Young Adult Workshop who shared their stories. The mentors provided the teens with a glimpse of the challenges they may face as they continue their journey and the support they can look forward to in the Young Adult program. Following their movie-making project, the group was treated to a visit by actress Angel Parker of Disney XD’s Lab Rats. Angel shared her tips with the kids and teens on how she deals with attention from others (including staring), how she remains true to her values even when others try to challenge them, and how working hard toward a goal can get you where you want to go. Young Adults in UBelong Practice Techniques, Mentor Teens The UBelong Young Adult Workshop, with participants ages 18-25, featured two tracks. In the first, participants took a positive look at where they were and where they were going in life, while building connections with one another through sharing stories and practicing the Phoenix Society’s Beyond Surviving: Tools for Thriving skills. Using the Rehearse Your Responses exercises, they were able to learn from others and to refine their interactions into positive experiences. In the second track, participants shared their personal stories with the purpose of reaching out to others. Their skills were put to use when the young adults hosted an icebreaker table at the kickoff event, talked with the teens in the Phoenix UBelong program about overcoming struggles and moving forward, and addressed the entire Phoenix WBC audience at the closing ceremonies. However, the highlight of their time together may have been sharing the thrills of the roller coasters at Knott’s Berry Farm theme park as they strengthened their sense of connection with each other. Parent Workshop Addresses Needs of the Family It wasn’t only children who were able to benefit from the Phoenix WBC family programming. An afternoon workshop focused on the unique needs of parents navigating burn recovery. The workshop leaders spoke of resilience and facilitated participants’ ability to benefit from the collective wisdom of healing and recovery that could be found throughout the room. A panel described their varied experiences, then the group divided into smaller discussion groups where parents shared useful information and tools for managing the needs of the family after a burn injury. Therapeutic Component Introduced in Phoenix WBC Childcare Even the youngest Congress attendees benefited from the wealth of expertise onsite. Phoenix UBelong volunteer staff brought elements of therapeutic programming to the very young children (ages 6 and under) who were enrolled in Phoenix WBC’s onsite childcare. These youngest participants experienced role-playing with their handmade puppets to act out and practice social skills as a way to talk about who they are and celebrating their unique qualities. Programs Provide Invaluable Take-Away This year’s program organizers set a goal of providing participants with extra skills, strength, and friendships to meet the challenges they face when they return home. Whether teen or toddler, parent or sibling, those who participated certainly found connection with the burn community, support to navigate recovery, and encouragement to “be who you are.” Phoenix Burn Support Magazine | 5 | Issue 3 2014 Annual Awards Recognize Service to Phoenix Society, Burn Community At the recent Phoenix World Burn Congress in Anaheim, California, the recipients of three Phoenix Society awards were recognized for their significant contributions to the Society and the greater burn community. Karen Badger Breslau Award Karen Badger is the 2014 recipient of the Alan & Delwyn Breslau Award, the highest distinction the Phoenix Society can bestow. She was selected for her “enthusiastic and visionary service” to the Phoenix Society and the burn community, says Society President Patrick Horan. He describes her dedication to the Phoenix Society, from being an integral part of the Phoenix SOAR program as it relates to the fire service to evaluating the efficiency of Phoenix Society programs, as being “appreciated and admired by the entire organization.” Karen, who is a social worker with 25 years of experience, as well as the associate dean of social work and assistant provost of undergraduate education at the University of Kentucky, brings the unique perspective of a researcher, mental health provider, and administrator to her work with the organization. On behalf of the Phoenix Society, she has collaborated with the International Association of Fire Fighters (IAFF) Charitable Foundation and National Fallen Firefighters Foundation to adapt the Phoenix SOAR® peer support program to better meet the needs of the fire service. She has been involved in the Phoenix World Burn Congress, developing and leading sessions, as well as working with the Phoenix Society and the fire service partners to expand Phoenix WBC offerings specifically for the fire service and their families. Karen has worked with the Phoenix Society to construct and carry out a needs assessment after The Station nightclub fire in Rhode Island and evaluations of programs, such as Phoenix SOAR, Journey Back, and UBelong. She has partnered with the Phoenix Society to present initiatives at national conferences and other forums. Karen has been a frequent contributor to Burn Support News (now Phoenix Burn Support Magazine). She has also served as a member of the Aftercare Reintegration Committee—a joint effort of the American Burn Association (ABA) and the Phoenix Society for Burn Survivors. Recognizing Karen’s numerous contributions that have not only significantly enhanced the ability of the Society to fulfill its mission but also enhanced the greater burn community, the Phoenix Society president thanked her for her years of work, tireless devotion, and inspirational leadership. Brien Dews is the recipient of the 2014 Harman Award, presented by the Phoenix Society’s board of directors to an individual or family, corporation, foundation or service organization with a proven record of exceptional generosity through direct financial support and/or volunteer effort. Brien Dews Harman Award Although Brien may describe himself as a “reluctant participant” at his first Phoenix WBC in 2001, it wasn’t long before he was an avid Phoenix Society supporter. In fact, by the next year he had organized the first of what has become an annual event, Buses by the Beach, through which Volkswagen (and other) van enthusiasts raise money for the Phoenix Society. Over the past 12 years, the Michigan-based group has combined Volkswagenstyle camping with fundraising at annual gatherings that draw enthusiasts from throughout the US and Canada. Since its inception Buses by the Beach has raised more than $120,000 for the Phoenix Society. Phoenix Burn Support Magazine | 6 | Issue 3 2014 Brien has not only attended every Phoenix WBC since his first, but has also taken on a key logistical role. He and his van were unexpectedly pressed into service in 2004 when help was need to get the conference shipment back to the Phoenix Society office in Grand Rapids, Michigan, from North Carolina. Now each year he drives the truck, transporting all of the Phoenix Society office equipment and supplies, to the Congress. In addition, since 2009, he has been responsible for coordinating all the exhibitors there. Brien also volunteers as a Phoenix advocate, a Phoenix SOAR peer supporter, and a moderator of the Phoenix Web-based chats. He is able to share with others his amazing story of recovery from the plane crash in which he sustained his burn injuries. After 6 weeks in a druginduced coma, months in therapy, and several surgeries, especially on his right hand which took the brunt of the burns, Brien was able to return to his profession as a clockmaker. In naming Brien the 2014 Harman Award recipient, the Phoenix Society board of directors has recognized his demonstrated outstanding volunteer and charitable responsibility and generosity that encourages others to take philanthropic leadership roles within the Phoenix Society for Burn Survivors. Dameron Hospital burn unit, Oscar got involved in the burn community, initially through the Fire Fighters Burn Institute (FFBI). He has volunteered nearly every year since then for the children’s burn camp it sponsors. Oscar Barrera Joe Hickey Fire Service Award The Joe Hickey Fire Service Award honors a firefighter or firefighter burn foundation who provides assistance to burn survivors, demonstrates a commitment to improve burn care through all phases of recovery, and works to carry on the mission of the Society and the local burn community. This year’s recipient is Oscar Barrera. Oscar was a captain in the Stockton (California) Fire Department when he was severely injured while fighting a house fire in 1997. Shortly after his release from the Although he looked forward to being able to spend more time with his wife once he retired, Oscar knew he had a calling to do something more, and his involvement with kids in the burn community eventually led to his current work with adult survivors. Oscar, who continues to serve on the FFBI advisory board, became a Phoenix SOAR peer supporter, as has his wife Jeannine, and provides assistance whenever requested. He also represents the IAFF on the ABA’s Aftercare Reintegration Committee and has assisted with planning and implementing firefighter programming for Phoenix World Burn Congress. Oscar was also the key influence in the development by the FFBI of the Liaison Response Team program in Sacramento to assist hospitals, firefighters, and firefighter families after a line-of-duty injury occurs, and he continues to participate in a very active way. He is certainly following the late firefighter Joe Hickey’s philosophy of placing the wellbeing of burn survivors, above all, as his top priority. Federal Fire Prevention Grant to Support Phoenix SOAR The Federal Emergency Management Agency (FEMA) has awarded a $269,000 grant to the Phoenix Society for Burn Survivors. The grant will support and expand the Phoenix SOAR® (Survivors Offering Assistance in Recovery®) program, with particular emphasis in increasing the access to firefighter peer support, educational information, and resources for burninjured firefighters, their families, and everyone in the fire service affected by burn injury. Activities under the grant will include an outreach and education program for the fire service and the recruitment and training of up to 25 burn-injured firefighters and their family members for advocacy. The training will take place as part of the Phoenix Society’s upcoming Phoenix World Burn Congress, which will be held October 21-24, in Indianapolis, Indiana. “The generous grant from FEMA will allow us to reach thousands of fire fighters and to significantly increase firefighter participation in the Phoenix SOAR program,” said Phoenix Society Executive Director Amy Acton. “We are very grateful for FEMA’s support of this work,” she added. Phoenix Burn Support Magazine | 7 | Issue 3 2014 Pivotal Moments Recognizing and Embracing Life-Changing Turning Points By James Bosch, MA, MFTi When does someone who has experienced the horror of a burn injury develop optimism regarding their future? What allows someone to go from needing help to becoming a source of help and inspiration for others? What was your pivotal moment? This question was posed to three burn survivors involved with the Phoenix Society for Burn Survivors. We wanted each person to try to identify their turning point, the moment that they perceived the possibility of a new life after their trauma. As you may suspect, there isn’t a single universal timeline for reaching these “Aha!” moments. However, in this article, you will learn how three brave individuals experienced their pivotal moments. We hope they will inspire those of you who are still waiting for yours, as well as provide you with some strategies that may help pave the way for your own journey of healing. Despite his extreme nervousness, he headed to Phoenix WBC in Atlanta—alone. “I wanted to see what else was out there!” he recalls. His big moment happened on the way to the conference hotel. Once the firefighters had picked him up at the airport, Tony found himself in a van full of other burn survivors. “Here I was ninety-plus percent burned, with fingers missing, and I shared the ride with five or six people who were missing limbs and had all kinds of prosthetics,” Tony says. He remembers chatting and getting to know them during the ride. In Webster’s Dictionary, the definition of pivotal includes “very important; critical.” A moment is described as “a precise point in time.” Pivotal moments are big moments and little moments of clarity that provide us with new perspectives and opportunities to change our lives. In turn, this transformation puts us in a position to help others change their lives. As you read, see if you can think of any pivotal or defining moments in your own life. Ask yourself if they were painful or exhilarating and think about how they changed you. Several Moments Can Lead to a Pivotal One Burn survivor Tony Gonzalez recalls several important moments that led to his “pivotal” one. Tony had sustained burns to 95% of his body in a propane explosion. While being treated at Loyola Burn Center near Chicago, he was visited by Phoenix Society founder Alan Breslau and his wife, Delwyn. The couple were at the burn center to speak to the staff there. Tony remembers that the Breslaus were very relaxed as they sat and chatted with him for almost an hour. They introduced him to the Phoenix Society, but more importantly, they introduced him to the possibility of a life after his devastating injury. That visit led to Tony’s decision to attend the 1999 Phoenix World Burn Congress—and to his primary pivotal moment. Tony had been struggling his way through a very tough process—re-entering the community in a wheelchair, wearing a plastic facemask, and having virtually all of his exposed skin in some stage of scarring and healing. Tony Gonzalez realized at his first Phoenix WBC “if they could do it, I could do it.” But once they arrived at the hotel, Tony immediately went to his room and didn’t venture out for quite a while. He knew he should head down to the conference, but without the protective and loving bubble of his family, he was feeling completely overwhelmed. After grounding himself, Tony decided to take a risk and finally go to dinner. While sitting with another survivor who had missing limbs, he realized that, as the evening progressed, his new friend’s prosthetics and injuries had “disappeared.” Phoenix Burn Support Magazine | 8 | Issue 3 2014 “These people became my heroes,” says Tony about the survivors he met at that Phoenix WBC. “I realized that if they could do it, I could do it.” His next pivotal moment occurred upon his return to the hospital—this time for a burn support group meeting. He arrived to find only three people in attendance and didn’t feel much of a connection to the group, but he decided to try again—this time taking his mother. His second experience was not any better. He felt there was a lot of complaining, and not a lot of support. But then he had the inspiration that led to his transformation. “The pivotal moment for me was when I decided to stop just sitting there and listening, and start sharing!” Tony says. He recognized that all of the participants had a lot of problems, but he wanted to start talking about solutions. Tony realized that if he wanted to get something out of the support experience, if the conversations were going to change, he was going to have to start contributing. This is the spirit he continues to bring to his current activities as a Phoenix SOAR® coordinator and peer supporter at Loyola Burn Center, and also as a community organizer, a fundraiser, and a leader in the burn community. If you are a burn survivor who is still struggling, Tony wants you to remember who you were before your injury and then to find your “new normal.” “Things will never be exactly like they used to be,” Tony says, “but things can be as good and different.” “Recovery is more of an ongoing process than an event,” he has discovered, so Tony urges those who are facing challenges to “never give up.” An Important Moment Can Occur Organically Jamie Nieto also attended the support group at Loyola Burn Center and he too reached a turning point there. He had been a patient at the hospital after sustaining burns to 55% of his body in a fire pit accident on the morning of his 20th birthday. Although he credits his mother and sister for being his “rocks” and saving his life, it was in those support group meetings that he became open to the potential of a life after burns. That support group also led Jamie to travel to Baltimore, Maryland, in 2005 for his first Phoenix World Burn Congress. While there, he experienced a pivotal moment that was very subtle and occurred in what seemed like an unlikely place. “I remember sitting around the bar talking and meeting everyone,” Jamie says about his second night at Phoenix WBC. “At that moment, there were no burn injuries or prosthetic legs among us; we were all just extremely connected and present with each other. All the scars fell away and we were just having fun. Looking back, I see I was more connected to the burn survivors doing a non-burn-recovery related activity.” Jamie Nieto, seen here with sister Ramona, recalls a subtle pivotal moment in a seemingly unlikely setting. Jamie’s experience was not unusual. Many who are healing from a trauma find that important moments can come organically and in social environments. “Don’t get me wrong, the support groups are great and the recovery programming is amazing and so healing,” says Jamie, “but the times I feel most connected to other burn survivors are when we are not talking about our burns, but just talking about life.” After that first trip to Phoenix WBC, Jamie moved beyond thinking “Why me?” to “Why not me?” He has become extremely active in his hospital’s burn support group. He is a Phoenix Society for Burn Survivors SOAR peer supporter and, along with Tony, he raises money for burn recovery. Jamie attributes much of his success to support from Tony, as well as Barry Bennett, the social worker on the unit and the drive behind their support program. “Surviving is the first victory,” says Jamie, and he believes it begins the day you live through your injury. “Instead of being victims,” he says, “we are victors.” Jamie wants others on this journey to know that the healing never stops. Recovery is definitely not the easiest road to travel, he admits, but it is “doable.” “I know it is an old cliché that what does not kill you will make you stronger,” he says, “but indeed I am a stronger person today than before my accident.” Transformation Is a Process Angie Merritt’s big pivotal moment resulted from a meeting 25 years ago with someone who would become her inspiration. Angie had been the victim of a violent crime that left 75% of her body burned. As she was recovering from these injuries, she couldn’t imagine how she was going to reenter society. She recalls being rolled down the hall on Phoenix Burn Support Magazine | 9 | Issue 3 2014 a hospital gurney and passing a mirror. She made the nurse stop and go back. She remembers saying, “I want to see that person in the mirror. I know that is not me.” After that first look, she was terrified at the thought of facing people again. Then, while in a rehabilitation hospital, Angie met Barbara Kammerer Quayle, a burn-survivor, educator, and long-time teacher of image enhancement for burn survivors. Barbara came to share her corrective cosmetics techniques and social skills training with Angie. She taught her how to use makeup to deal with the skin discoloration caused by her burns. This simple tool gave Angie much hope and was a turning point for her. She enthusiastically recalls thinking that this woman was her heroine, saying, “Her fingers were burned worse than mine, yet she walked so proud! She was my Angelina Jolie! I really admired her.” Angie moved to Las Vegas shortly after that. She continued to undergo surgeries at University Medical Center - Las Vegas. She became a volunteer in the burn unit, spending so much time there that she felt like an employee. However, she realized that to further her recovery she had to transfer that commitment to a paying job and get back into the world. Angie recalls initially walking with her head down and often dreaming that the burns never happened. But utilizing the tools she learned from her mentor, Barbara, and thinking of herself as an actress helped her get through. She says she decided to act the part of someone proud and confident until she actually started to feel that way. “In the morning, I put on my make-up like an actress and headed out in the world,” she say. “At night, I would take off my makeup like removing war paint and relax, having made it through the day and hopefully having been a model for other struggling people.” Today, Angie feels proud when people notice her on the bus or in public. “I want people to see me, to see that you can survive and be happy,” she states. “If I can make someone happy, my work is done.” Yes, there are still days that are difficult for her, days when she feels down, but more often than not she is positive. “I am happy today,” she says. “I have a home, a job and, am blessed with a wonderful family. I have God in my heart. What else could I ask for?” Recently, Angie took another big step in her recovery when she decided to volunteer as a Phoenix SOAR peer supporter. That also led to her next transformative moment, one that was beautifully connected to the first. Twenty-five years after their initial meeting, Barbara Kammerer Quayle walked in as an instructor at Angie’s Phoenix SOAR training and much to Angie’s delight, Barbara still remembered her. Angie was finally able to share with Barbara what a significant impact she has had on her life. Now Angie can do for others what Barbara once did for her, serve as a teacher and an inspiration. She advises burn survivors who are struggling to have faith that it will get better. She encourages them to hold their heads up and take advantage of every opportunity for growth. She cautions them not to always rely on others, but to instead get up and do things for themselves. Most importantly, she suggests, they should remember to laugh often. Embracing Windows of Opportunity, Acting on Change By reflecting on these three inspirational stories, we can deduce some of the basic “ingredients” that help transformational moments occur. The first is contact with others who share a similar journey and who understand our story. This is the power of peer support and programs like the Phoenix World Burn Congress. The second is environment. You have to get on that van, be in that social setting, attend that support group, or go to that make-up class. Getting there is most of the battle—taking the leap and venturing somewhere that frightens you or makes you hesitant is an important step. The third is change. For some of us, the injury itself is the thing that changes our lives for the better by forcing us to make big changes and perhaps to look at ways in which we were previously living in sedentary or unhealthy ways. However, creating change often requires you to struggle a bit on your own and take risks. Each person’s pivotal moment will be as different as their scars, yet by hearing one another’s stories we can find hope. It is important to remember that there are many struggles leading up to these Aha! moments and those moments cannot be forced. However, by embracing windows of opportunity and acting on change we can live beyond our wildest dreams. As author Elizabeth Norris so eloquently says in her book Unbroken, “The pivotal moments in your life are always made up of smaller pieces, things that seemed insignificant at the time but in fact brought you to where you needed to be.” Tony, Jamie, and Angie definitely prove her point. 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 Burn Support Magazine | 10 | Issue 3 2014 Lasers and Burn Scars An Exciting New Era in Burn Reconstruction By Pirko Maguina, MD Five years ago three beautiful young sisters–-triplets, to be precise—caused a stir in the burn survivor community after they appeared on “Today” and “20/20” and shared their courageous story with the world. As toddlers, the Berns triplets had survived a house fire that tragically took their mother’s life. Growing up, all three underwent numerous reconstructive surgeries, which left them with extensive scars throughout their bodies. In 2008, the sisters underwent treatment for their scars with lasers. The results surprised many—their scars had changed dramatically. None of the scars had disappeared but all three were overjoyed to report marked improvement. Laser technology had evolved to make scars flatter, softer, more elastic, and of more even color. may result after reconstructive surgery with skin from the scalp. Unfortunately, because they target the dark pigment in the hair follicles, they don’t work well for blondes or people with very light hair color. Laser treatments are not magic. The changes take months and while scars can improve dramatically, they never disappear. Like all medical procedures, they can have complications such as infections that require antibiotics or even severe eye injuries. (We use special protective goggles to prevent these.) It is important to use the newest equipment as some of the older, outdated lasers caused much more problems and didn’t offer the benefits of the newest technology. Fractionated lasers, such as FCO2, treat only a fraction of the scar, “zapping” away thousands of microscopic columns of scar tissue. The scar reacts over time by gradually flattening and softening. Scars that are dark tend to lose some of their pigment and in many cases lighten up to better match the skin around them. Our team in Sacramento has been treating burn survivors with lasers for about 4 years now. Adults are seen at the University of California Davis Medical Center and children at the pediatric burn unit at Shriners Hospital for Children—Northern California. After several hundred treatment sessions, we are very encouraged by this initial experience. Laser treatments are done as outpatient procedures and typically don’t need anesthesia, instead just numbing creams. Most patients do need several treatments, especially if they have very extensive scars. No, we don’t treat the whole body at once! The results vary—sometimes we are amazed at the marked improvement and other times we don’t see a lot of change. We don’t know yet why some patients respond better than others but we are hoping to find out. It is a very inspiring time for research and the latest equipment has brought amazing innovations! PD lasers target the tiny blood vessels that nourish the scars. These blood vessels are also responsible for making some scars red and it is through them that the chemicals responsible for itching are released. By reducing the blood flow in the scars with the PD laser, many scars gradually appear less red, less swollen, and less itchy. We now have the option of improving scars (rather than just cutting them out). Lasers are allowing us to treat scars that are years or even decades old. My friend and mentor Matt Donelan, MD, of Shriners Hospital for Children—Boston has worded it best: “Scars have a right to live and get better.” Hair removal lasers target the dark pigment in the hair follicles (melanin) and can reduce or sometimes even stop hair growth. This is particularly useful for scars that have ingrown hairs. (We mostly see them on men who survive burns and develop ingrown hairs all over their beards.) They also work well for unwanted hair that We are experiencing a new era in burn reconstruction, and it’s exciting! Their experience was followed by other similar reports. As a result, many medical studies were performed to better understand the effects of lasers on burn scars. These days, laser therapy has evolved to be a key treatment option for burn survivors. More than 50 different lasers are used in medicine. Of these, 3 types have proven most useful: the fractionated carbon dioxide laser (FCO2), the pulse dye laser (PD), and the hair removal lasers. (There are many of the latter— we use one called “Alexandrite.”) Dr. Pirko Maguina is a plastic and reconstructive surgeon at Shriners Hospitals for Children—Northern California and the University of California Davis Medical Center. Phoenix Burn Support Magazine | 11 | Issue 3 2014 Exploring Mind-Body Practices to Complement Traditional Healthcare Many Americans, nearly 40 percent, use health care approaches developed outside of mainstream Western, or conventional, medicine for specific conditions or overall well-being, reports the National Institutes of Health National Center for Complementary and Alternative Medicine website. These include mind and body practices, such as acupuncture, massage therapy, meditation, tai chi, qi gong, progressive relaxation, and guided imagery. Burn survivors are certainly among those who are utilizing these complementary approaches in conjunction with conventional medical treatments and reporting positive experiences. The Soul-Saving Miracle of Yoga By Blake Tedder You’ve probably heard that yoga is a great way to get some gentle exercise and increase your flexibility. That is certainly what yoga is known for. I lost a lot of weight, sure, and quite easily began eating a vegetarian diet too. I felt healthier than ever. But I could not write a piece about yoga without telling you how it healed and continues to heal my soul. my body. That residual trauma (PTSD) wouldn’t let me experience my body sensations and life itself. Through the practice of yoga, which involves deeply stretching and strengthening the body, deeply breathing, and focusing the mind, I began to come back from the distancing mental fog of trauma to feel alive and awake again in my beautiful skin. I will never forget lying on my back in a darkened room at the end of my first yoga class 7 years ago. I was softly weeping sweet, hot tears. I had “come home” to myself for the first time. The feeling was that of wholeness, selflove, self-compassion, and self-understanding. I was now “okay” and I realized that I had not felt “okay” in my life until that very moment. I hugged myself and forgave my heart for being so lost and driving and unaware for so many years. It was like I had been walking around with a heavy backpack, and I had all but forgotten about it until it was taken off of me. As burn survivors, it is easy for us to dissociate from our bodies and sensations. It’s how our minds initially saved us from experiencing the most intense of pains, being burned alive. When I first began yoga, I often experienced complete and utter panic—sweating, trying to escape, and a racing heart. It was the stored trauma rising out of me. Over time, through developing an easeful attitude toward the intense sensations of stretching and through breathing slowly and deeply, I lost the feeling of panic— not only when I stretched but also in my daily life. I still have heightened anxiety, but nothing like it was before yoga became a part of my life. Practicing yoga a couple times a week over the next months I learned all sorts of interesting, scary, and outright amazing things about my body, especially the fact that I knew practically nothing about it. I knew all sorts of names for parts of my body after a year or more of hospitalization and physical therapy, but I didn’t know how to live in all those parts of my body or feel them all at the same time. The trauma of surviving a plane crash, of being on fire, and of the constant poking and prodding in the hospital was still holding onto me deep inside the tissues of It helps so much with scars too. I’ll be honest though, stretching through scar tissue is often really painful. It just is. That’s something we get to live with. But it is often so rewarding to stretch through my scars when I am gentle and when I take my time. I have a large scar band running from my left knee up my left side to my left nipple. I found a couple of years ago that if I contorted my body in a certain way with my left arm on the top of a doorway, I could stretch this big band. It usually takes a good 5 minutes for the scar to really loosen up. Sometimes I find that stretching through it is almost Phoenix Burn Support Magazine | 12 | Issue 3 2014 intoxicating—all of a sudden I can breathe deeper, my spine shifts back into alignment, I stand taller, energy flows through my body, and my thinking is much clearer. It’s absolutely amazing how the scar tissue can pull us out of alignment. It can make us hunch over or turn a shoulder this way or that, which can cause chronic pain and discomfort. The gentle and prolonged stretching of this tissue can bring a lot of relief. Just remember to be kind and patient with your body and your mind, they’ve been through a lot (to say the least). I now know that stretching my body and scar tissue immediately makes me think clearer and even more lovingly because my mind and my body are not separate things. This is one of the basic tenets of yoga and a point we burn survivors need to take to heart. Like many of you reading this, I owe my life to Western (allopathic) medicine. I would not be here if it were not for escharotomies, skin grafts, antibiotics, sterile surgical techniques, and morphine. But it isn’t the whole story of my recovery. The emotional recovery running alongside my physical healing was and is still just as important. And so the soul-saving miracle of yoga is that I now feel in control of my own healing because I do not need someone to do something to me anymore. I have had enough of that anyway. Through calming my nervous system with yoga and clearing out my thoughts with meditation, I am bringing my mind and body back together and leaving my trauma, layer by layer, behind me—like I am running down the road on a summer day stripping off heavy coats one by one. It is such a blessing. I hope you can find a similar practice and experience some of the same (or better) effects. Shaking Free of Stress and Trauma By Nkem Ndefo, RN, CNM Tension and Trauma Release Exercises (TRE®) Certification Trainer and Provider When it comes to managing stress and healing trauma, how is that we can understand everything but still be unable to shake free of the experience? Many of us have tried traditional talk therapy, medications, and relaxation techniques. We may even have experimented with hypnosis and other alternative modalities. Yet we still experience tension and find ourselves reactive to old familiar triggers. All of these healing methods are valuable but they miss one important fact about how our bodies work. When we are stressed or threatened, our bodies physically tense and contract, especially muscles deep in our core. At the same time, a cascade of neurological and hormonal changes transforms our body for selfprotection and defense. Our senses sharpen, heartbeat and breathing quicken, and digestion slows to a crawl. Once we feel safe again, our bodies activate a natural shaking mechanism to discharge the muscular tension and reset our systems back to baseline. Many of us have felt this trembling but few of us knew that our body was literally shaking it off. Furthermore, in our culture, shaking is seen as weak and out of control, something to quickly suppress or hide. But if this tension is not shaken out, then signals are sent to our brain that we are still under threat, which causes us to tighten up even more. A vicious cycle ensues. So all of these great healing modalities help us understand our experiences and give us many management tools, but if we don’t shake, we are still in the grips of the stress and trauma vortex. The big question is how to activate this natural trembling mechanism. While working in international war zones, David Berceli, a social worker and bioenergetic practitioner, pioneered a set of simple exercises that activate what is now called the therapeutic tremor. The exercises, known as Tension/Trauma Releasing Exercises (TRE®), have been taught in 100 countries over the last 20 years. TRE has been successfully utilized by large military populations, traumatized communities exposed to natural and continued on page 21 Phoenix Burn Support Magazine | 13 | Issue 3 2014 Every burn survivor deserves support and tools to guide his or her recovery journey. Because of visionary supporters like you, we’re making it happen. As a part of the Phoenix Society community, you understand the life-changing impact of a burn injury. The journey of recovery often comes with challenges for mind, body, and spirit—for the survivor, as well as his or her loved ones. Imagine that journey about 40 years ago… with only dozens of burn centers across the country, less sophisticated medical care, and only a scattering of informal burn support groups—not to mention no Internet or Google. It was incredibly difficult for burn survivors to make sense of their journey. It was this need that became the heart of the Phoenix Society’s work: to ensure that no burn survivor recovers alone. More than 35 years ago, we began connecting people and creating resources for the challenges that come after surviving a burn injury. Because of people like you, our community has grown from recognizing a need to leading the largest burn community in the nation. As our growth continues, we ask for your continued support. Each year, more than 48,000 people rely on our peer support programs, educational events, and resources. We stand ready to meet even more people in 2015—with crucial programs like Phoenix SOAR® and Phoenix World Burn Congress. Will you be part of creating the future of burn recovery? In addition to our core programs, the Phoenix Society plays a leading role in lifting up the voice of the burn community and shaping the future of burn recovery. Our experience, as well as the strength of our national network, has made us a trusted partner, shaping the care a survivor receives. Just one example of this is our partnership with The Johns Hopkins Regional Burn Center, as well as The Johns Hopkins University Department of Physical Medicine and Rehabilitation and Department of Psychiatry. Together, we are developing and testing a new program to help burn survivors manage their pain. “There is no better champion of the burn community than the Phoenix Society. Without its leadership over the past 35 years, burn recovery would not be as hope-filled and successful as it is today. As someone who treats people with burn injuries every day, I understand that surviving a burn is only the beginning. The Phoenix Society is my trusted partner in ensuring that burn survivors feel supported and gain skills for life after they leave the burn unit.” David G. Greenhalgh, M.D. Chief of Burn Surgery Shriners Hospitals for Children Northern California Partnerships like this have the potential to create important innovation for burn survivors and their loved ones. It is the strength of our community— and your ongoing engagement—that makes such groundbreaking work possible. By giving now, you continue your own partnership with our work and enable the Phoenix Society to • Meet more burn survivors and their loved ones as they begin the journey of recovery through programs such as Phoenix SOAR. In 2014 alone, nearly 13,000 patients in 64 hospitals have had access to this program. • Provide essential education and resources to burn survivors and their loved ones as they get back to living. From getting a child back to school to preparing to go back to work, we support each step in the journey. • Connect the burn community through Phoenix World Burn Congress, online chats, and publications like the one you’re reading now. This important work is made possible by the investment every member of our community makes. Every gift makes a difference—thank you for sharing yours! Phoenix Burn Support Magazine | 14 | Issue 3 2014 Your Support Has Big Impact Thank You Every day, the Phoenix Society puts your gift to work to provide needed information and support to burn survivors, their loved ones, healthcare professionals, and fire service members. Over the year, we engage a community of more than 48,000 people—and we have plans to reach even more thanks to your support! Burn survivors, loved ones, and professionals received information, resources, and support from our website Hospitalized burn patients gained access to one-on-one peer support from ‘someone who’s been there’ through the Phoenix SOAR program Requests for assistance received and personally responded to with local referrals, mailed resources, and phone support 44,000 Survivors, families, firefighters, and healthcare professionals experienced the life-changing Phoenix World Burn Congress 13,000 Kids and teens experienced Phoenix UBelong, a unique program for youth and families during Phoenix World Burn Congress 1,100 Burn survivors furthered their education dreams with the help of the Phoenix Education Grant—our highest number of recipients ever 1,038 53 24 Invest in the Future of Burn Recovery—Make Your Year-End Gift Today • By Mail – Use the convenient envelope provided in this issue. • Online – Go to www.phoenix-society.org/give2014/ • By Phone – Call Megan Geerling at 800-888-2876. Phoenix Burn Support Magazine | 15 | Issue 3 2014 Twenty-Four Students Benefit from PEG in 2014 By Maureen Kalil Education breeds confidence. Confidence breeds hope. Hope breeds peace. — Confucius In 2002, Barbara Kammerer Quayle, a school teacher at the time of her burn injury, had a vision to give survivors the confidence and hope that education would bring by providing the initial funding for the first national survivor scholarship. Later that year, the program, which Barbara named after her mother, Peg, awarded just four scholarships. Since then, the increasing generosity of countless donors has funded a growing number of recipients. In 2013, AlloSource, one of the nation’s largest nonprofit providers of skin, bone, and soft tissue allografts, pledged a $250,000 donation, which will be made over 10 years, to the Phoenix Education Grant (PEG) program. This support will allow the Phoenix Society to make it possible for many more burn survivors to achieve their educational dreams. Twenty-four burn survivors are furthering their education in 2014-15 with the financial assistance of a PEG. Reviewing the applications submitted this year gave us confidence and hope for the future! With the help of a PEG, Lauren Lind enrolled as a freshman this fall at the University of Cincinnati, where she will “start a new chapter and begin a new journey” in her life. She looks forward to fulfilling her career ambition of becoming a nurse and her life aspiration to work in the burn center in which she was treated following an injury at age 6. However, Lauren isn’t waiting until she earns her degree to give back to the burn community. She is already a volunteer in the Phoenix SOAR® peer support program at Shriners Hospitals for Children in Cincinnati, where she also serves as a patient ambassador. College freshman Zachery Jensen has also dealt with the challenges of a burn injury since early childhood. After sustaining a burn injury to his feet when he was just 2 years old, Zachery says “it took a great work ethic and strong will to attain a normal life.” His experience has inspired him to pursue a degree in radiologic sciences at North Dakota State University so that he can help people recover from accidents and injuries. Zachary says he intends to treat them with the same kindness and compassion that he received from his caretakers. Hamida Pabai was already a college student when she sustained a burn injury in 2012, but it did not deter her from continuing her education. “The last thing I wanted to do was allow my accident to hinder my life in any way,” she says. The PEG recipient is pursuing a degree in psychology from Bethel University. She hopes that her education will contribute to her career ambition of counseling individuals who have experienced severe trauma, including burn injuries. “Essentially, this experience has truly ignited my passion for seeing people break through the stigma that is being a burn victim and aiding them every step of the way, allowing them to see themselves as a burn survivor,” she explains. Mark Andrew Roseman is what is often described as a “nontraditional” student. The 36-year-old sustained an injury on the job 3 years ago, the result of an explosion in the manhole in which he was working. Eager to make a career change, he decided to follow his interest in inventions and pursue a degree in mechanical engineering. Mark, who lost his wife to cancer just a year after his injury, is attending the University of Michigan – Dearborn while raising his two children as a single parent. It should come as no surprise that his personal motto is “Keep moving forward.” If you would like to support future PEG scholars by contributing to the endowment that has been established, you can call the Society office at 800-8882876 or donate online at www.phoenix-society.org. (Be sure to indicate that your donation is for “PEG.”) If you are a burn survivor who is pursing post-secondary education, either college, university, graduate, or trade school, keep in mind that the PEG application for next year for will be posted on the Phoenix Society website in early 2015. The deadline for submission is July 1. Phoenix Burn Support Magazine | 16 | Issue 3 2014 To learn about the following 2014 PEG recipients, go to the Phoenix Society blog at http://www.phoenix-society.org/blog Shelby Anderson University of California, Irvine Karey Herrin University of Cincinnati– Clermont College Angelina Peone SUNY College of Agriculture & Technology at Cobleskill Marissa Bane University of North Carolina at Chapel Hill Nathan Alan Honeycutt North Carolina State University Alexi Pyles Bethany College Jacob Bergstorm Northwest Christian University Baylor Juelsgaard University of Wisconsin River Falls Jose Rivas University of Colorado Denver Katherine Bostic University of Georgia Brooke Linman San Diego State University Joshua Talbert University of South Carolina Haley McClure Western Iowa Tech Community College John-Paul Vega University of Texas at San Antonio Sara Christenson Miami University – Middletown Elaina Meier University of Wisconsin Tyler Watkins Memorial University of Newfoundland Dulcia Halliday State University of New York at New Paltz Linda Palmer Branford Hall Career Institute Bridget Brown Western Nebraska Community College Phoenix Burn Support Magazine | 17 | Issue 3 2014 Self-Compassion: What It Is, How It Can Help By Samantha Price, MHDL, NCC, LPC How often do you catch yourself, saying unkind things to yourself, such as “Oh, how could I be such a jerk?” or “If I weren’t so careless all the time, I wouldn’t have made that mistake!” or “You idiot!” (or maybe much worse). Would you say these things to a good friend? I’ll bet that you would never consider talking to a good friend that way. Yet it seems that harsh self-judgment has become normal for many of us and we may even believe that it is the best way to motivate ourselves to do better. However, there is a better way to motivate yourself to do better, to deal with difficult situations, and to feel better in general. There is a growing awareness, backed up by hard evidence that such self-critical treatment is not helpful and can be very harmful to our ability to feel good about ourselves and to make positive changes in our lives. In fact, such harsh self-criticism tends to make us feel depressed, anxious, insecure, and afraid to take on new challenges. Clearly, this is not the way to motivate ourselves (or others) to do better. The growing movements of self-compassion and mindfulness are linked by the growing awareness and evidence from a huge body of research that indicate that treating ourselves (and others) with kindness not only feels better but also allows us to make healthy changes and face new challenges with more success. Self-compassion not only helps heal negative states but also increases positive ones. Specifically, research on self-compassion shows that self-compassion enhances emotional resiliency, boosts happiness, gives us more ability to manage traumatic emotions, reduces anxiety and depression, leads to less perfectionism and less shame, reduces stress, and can even maintain healthy lifestyle habits, such as diet and exercise. If compassion is the feeling of caring for and wanting to help others who are suffering, then self-compassion is applying the same feeling toward ourselves. If others are worthy of this awareness, then we are also. So What Is Self-Compassion? According to Kristen Neff (one of the principal researchers of this new movement), self-compassion consists of three elements: self-kindness, common humanity, and mindfulness. Looking at these three elements separately allows us to take a look at self-compassion and gives us ways to develop more self-compassion in our lives. Self-kindness If we recognize compassion as treating others kindly, then self-compassion is turning that same caring heart and attitude toward ourselves—in essence treating ourselves as we would a good friend. If a good friend Phoenix Burn Support Magazine | 18 | Issue 3 2014 is having a difficult day, we would listen to them, offer some care, and be there for them. So treating ourselves with self-kindness first means that we have to notice that we are having a difficult time (when that is true) and then it means that we treat ourselves with care and understanding. That might mean just acknowledging our feelings and soothing ourselves. It may also mean encouraging ourselves to go on, try something again, or whatever we might need in that particular situation. We act as our own best, encouraging friend. Common Humanity Another element of self-compassion is common humanity. Common humanity recognizes that all people suffer, that suffering is a part of life for everyone at some time, and that we are not better than or less than anyone for feeling these things. It allows us to see ourselves and others as part of a larger whole and, therefore, to avoid the isolation that we might feel if we see ourselves (or others) as “less than” or not as good as others. When we recognize that we are all part of the shared human experience, then we can see that we are all in this together. Our experiences, difficulties, pain may be different in specifics but we all experience difficulties, imperfections, failures, successes, etc. This awareness allows us to be more compassionate toward ourselves and others. Mindfulness The third element, mindfulness, is being aware of ourselves in the present moment without judgment. Mindfulness is “knowing what you are experiencing while you’re experiencing it.” — Guy Armstrong (meditation teacher) Mindfulness is about being with painful emotions (as well as positive ones) and, therefore, noticing rather than avoiding them. In that way, we can choose to use self-compassion to help ourselves deal with them. It doesn’t mean that we exaggerate them or stay in them. Mindfulness means letting things be as they are—if we are suffering, we notice our suffering, offer care to ourselves, and sometimes take some steps to help ourselves move forward. Without mindfulness, we often fail to notice that we are feeling discouraged, anxious, tired, hungry, tense, etc, and we may fail to act in a way that might be helpful. Being mindful is an attitude that can be practiced in formal ways, such as through mindfulness meditation practices, or it can be practiced in the simple act of noticing the breath go in and out of your body. This simple practice, done for as little as a minute or two, can increase our awareness of what is happening in the present moment. You can “remember to notice.” Mindfulness means paying attention in a particular way; on purpose, in the present moment, and non-judgmentally. —Jon Kabot Zinn So the elements of self-kindness, common humanity, and mindfulness can be used to understand what is meant by self-compassion as an attitude and as a way of being. With practice, self-compassion can take the place of self-critical attitudes. As with other challenges, be compassionate with yourself as you practice the exercises below. In addition, there are a growing number of self-compassion classes taught in the United States and in Europe (see Resources on page 20). Self-Compassion Practices I. Changing Your Self-Talk One way to practice self-compassion is to use compassionate ways of talking to yourself when you find that you have made a mistake or fallen short of your expectations. Listening to your self-talk and changing it from judgmental to self-compassionate talk can be difficult at first but becomes easier with time. Don’t take yourself so seriously. Exercise your sense of humor—it is magic. II. Self-Compassion Break (from Mindful Self-Compassion Course, used with permission from Christopher Germer and Kristen Neff) When you notice that you’re feeling stress or emotional discomfort, see if you can find the discomfort in your body. Where do you feel it the most? Make contact with the sensations as they arise in your body. Now, say to yourself, slowly: 1. This is a moment of suffering. That’s “mindfulness.” Other options include: This hurts. This is tough. Ouch! 2. Suffering is a part of living. That’s “common humanity.” Other options include: Other people feel this way. I’m not alone. We all struggle in our lives. Now, put your hands over your heart, or wherever it feels soothing, feeling the warmth and gentle touch of your hands. continued on page 20 Phoenix Burn Support Magazine | 19 | Issue 3 2014 Continued from page 19 brings you genuine happiness (for example, meet with friends, send a birthday card, play a game)? Is there any way that you’d like to enrich these connections? Say to yourself: 3. May I be kind to myself. See if you can find words for what you need in times like this. Other options may be: May I accept myself as I am. May I give myself the compassion that I need. May I learn to accept myself as I am. May I forgive myself. May I be strong. May I be safe. (pause) 4. May I give myself the compassion I need. If you’re having trouble finding the right language, sometimes it helps to imagine what you might say to a dear friend struggling with that same difficulty. (pause) Can you say something similar to yourself, letting the words roll gently through your mind? III.Self-Compassion in Daily Life (used with permission from Germer and Neff) To be compassionate to yourself means to •Know when you’re under stress or suffering (mindfulness). •Respond with care and kindness (selfcompassion). The simplest approach is to discover how you already care for yourself, and then remind yourself to do those things when your life becomes difficult. Physically – Soften the body. How do you care for yourself physically (for example, exercise, massage, warm bath, cup of tea)? Can you think of new ways to release the tension and stress that builds up in your body? Mentally – Reduce agitation. How do you care for your mind, especially when you’re under stress (for example, meditation, watch a funny movie, read an inspiring book)? Is there a new strategy you’d like to try to let your thoughts come and go more easily? Emotionally – Soothe and comfort yourself. How do you care for yourself emotionally (pet the dog, journal, cook)? Is there something new you’d like to try? Relationally – Connect with others. How or when do you relate to others that Spiritually – Commit to your values. What do you do to care for yourself spiritually (pray, walk in the woods, help others)? If you’ve been neglecting your spiritual side, is there anything you’d like to remember to do? Add some of your own spiritual and healthy living practices, including religious practices, meditation, gardening, hanging out with pets and children, or anything that enhances your life. It helps to remember that our inner critic is often formed in childhood when we receive critical messages from parents, teachers, or other influences, rather than sufficient nurturing, positive feedback that allows us to grow, learn, and develop from a nurturing compassion place. Therefore, it helps to have patience with ourselves as healing these inner messages often takes time and effort. Exercising your own creativity in addressing self-criticism and transforming it into self-compassion is a practice well worth your time and energy. You can change your harsh critic into a warm, helpful supporting ally and increase your resiliency, happiness, joy and feeling of peace. Become more self-compassionate and you will always have a friend at your side. Resources Germer CK (2009). The Mindful Path to Self-Compassion: Freeing Yourself From Destructive Thoughts and Emotions. New York: Guilford Press. Gilbert P (2009). The Compassionate Mind: A New Approach to Life’s Challenges. Oakland, CA: New Harbinger Press. Neff KD (2011). Self-Compassion: Stop Beating Yourself Up and Leave Insecurity Behind. New York: William Morrow. www.centerformsc.org www.greatergoodberkeley.edu www.mindfulselfcompassion.org (classes in mindful self-compassion in the U.S.) www.self-compassion.org Samantha Price, MHDL, NCC, LPC, is a psychotherapist in private practice in Grand Rapids, Michigan, who is committed to helping her clients and herself learn to be more selfcompassionate. Phoenix Burn Support Magazine | 20 | Issue 3 2014 Shaking Free of Stress (continued from page 13) war-related disasters, first responders, mental health professionals, teachers, prisoners, individuals with posttraumatic stress disorder, and athletes. Designed as a self-directed method to be taught in group settings, TRE is easily learned, reproduced, and independently practiced. There are seven exercises that gently stretch and mildly fatigue muscles in the legs, pelvis, and lower torso. Individualized modifications are available, allowing successful participation regardless of disability, mobility challenges, or fitness level. Once the therapeutic tremor is activated, lying in a relaxed position allows a typically enjoyable release to unfold. The selfcontrolled muscular shaking can be easily stopped and re-started at any time. Because TRE is primarily a physical release, it is unnecessary to relive traumatic events although regular practice often brings a sense of emotional calm and resilience. Other reported benefits include decreased pain, increased mobility and range of motion, improved sleep, an increased sense of connection, and improved overall quality of life. Stress and trauma are unfortunate parts of life, but if we can understand how to use our body’s natural selfhealing abilities, we don’t have to remain stuck in cycles of tension and despair. We can literally shake it off. Key Points • The therapeutic tremor is the body’s natural stress and trauma release mechanism. • Tension/Trauma Releasing Exercises (TRE) are 7 simple exercises designed to activate the therapeutic tremor. • TRE benefits include decreased pain, increased mobility, and improved quality of life. • TRE can be practiced in groups, individually, and independently. Learn More Answers to frequently asked questions, testimonials, books and DVDs, research, and practitioners can be found at traumaprevention.com and trelosangeles. com. Note: If there is no practitioner local to you, many practitioners are available via video-conferencing software, such as Skype and Google Hangout. To learn more about complementary medicine, including mind and body practices, see the online fact sheet provided on the National Center for Complementary and Alternative Medicine website, http://nccam.nih.gov/health/whatiscam. 27th ANNUAL PHOENIX WORLD BURN CONGRESS 2015 Indianapolis Marriott Downtown Indianapolis, IN October 21-24, 2015 Lead Sponsors: Phoenix Burn Support Magazine | 21 | Issue 3 2014 Phoenix WBC Bringing People Together to Share the Journey By Amy Acton, RN, BSN Executive Director Our human compassion binds us the one to the other—not in pity or patronizingly, but as human beings who have learnt how to turn our common suffering into hope for the future. —Nelson Mandela After returning from the largest Phoenix World Burn Congress in our history, with 1,038 registered attendees, there is a feeling of tremendous excitement that so many were able to gather together to heal and grow, including the more than 450 first-time attendees. However, there is also a sense of urgency as we work to respond to the growing requests for help. Three Factors for Our Success The Phoenix Society has been successful in expanding the impact of our programs because of three key factors: Our Unique Voice—The greater Phoenix Society community brings a unique voice and perspective to living with a burn injury. Together we have found ways to support one another in the steps to healing. Those who have experienced the caring people of the Society and benefited from our resources recognize the value of the Phoenix Society as a hub of long-term recovery. More than 250 individuals volunteer, more than 179 organizations serve as sponsors, and more than 70 send survivors, all to ensure our collective goals are met for this annual event. The knowledge and experience gained there influence everything we do and benefit the entire burn community. The staff at the Phoenix Society is fortunate to work with literally thousands of volunteers each year to reach survivors and their families with our programs. Among these are the dedicated members of the Phoenix WBC Planning Committee. The success of this event is due largely to the fact that all segments of the burn community are represented here. They not only contribute to the goals we have for the Congress itself, but also help us find ways to reach out to those who are unable to attend. Another important group to which the Phoenix Society owes its success is our board of directors. Under the leadership of our president Pat Horan, a burn survivor, the board is helping us to chart the course for the future of the Phoenix Society—and to respond to expanding requests for our programs and services. I, for one, am grateful for their steadfast commitment to the mission of this vital organization and stand ready to help take our organization to the next level. Three Key Areas of Our Mission A Collective Goal—I believe that the realization that there are still thousands of people out there struggling alone to heal from a burn trauma drives us all. The Phoenix Society, as well as many local burn centers and organizations, share a goal of wanting to ensure that no one ever feels isolated on this journey of burn recovery. The important message we all strive to convey is “You are not alone.” It is Phoenix World Burn Congress that serves as the catalyst and hub for the programs and resources that we provide in three key areas of our mission: peer support, education and advocacy. Your voice and those of the hundreds of other attendees who represent the various segments of the burn community help us determine how we can maximize our impact. You directly influence the future work at the Phoenix Society and guide us in developing ways we can best address the long-term needs of families affected by a burn injury. True Teamwork—The laser focus of the staff, volunteers, and our many partner organizations has allowed us to create a safe haven for healing at Phoenix WBC. If you were unable to join us this year in Anaheim, please be assured that the impact of this event will extend beyond the more than 1,000 people in attendance. We Phoenix Burn Support Magazine | 22 | Issue 3 2014 will all benefit by the knowledge and experience gained about burn recovery at the Phoenix WBC. You will see it presented in a variety of formats within our online community, in Burn Support Magazine, and through Phoenix Society advocates and speakers. Building long-term resources is the ultimate goal of holding a national congress and we continue that work in the office every day providing tools for recovery and referrals to more than 1,000 individuals annually who otherwise would be walking on this journey alone. Our message reaches more than 44,000 people on-line, as well as countless others who receive Phoenix Society information through their local burn centers and foundations. This graphic illustrates how, considering your input, we carry out our mission year round: MISSION FOCUS Peer Support 19% Education Percentage of Investment Advocacy 44% The peer support that happens at Phoenix WBC also doesn’t end when the Congress adjourns. Phoenix SOAR®-trained peers offer support in more than 64 burn centers every day, providing access to this vital component of burn recovery to more than 12,000 new survivors and their families each year. A Simple But Powerful Promise No one else does what we do. The Phoenix Society for Burn Survivors is the leading national organization that provides caring people to share the journey of recovery with burn survivors and their families and the resources to help make the experience of burn injury easier. The Phoenix Society is where those looking to heal and get back to living turn. The investment, involvement, and expertise of the hundreds who participate in Phoenix WBC, the Phoenix Society board and staff, and thousands of members and volunteers make the Phoenix Society what it is today and help us reach our goals for tomorrow. Nothing heals people like other people. So we invite you to join this family of support—to ensure that no one ever has to go it alone in his or her burn recovery. Help us reach our collective goal so that no one feels alone on their path to healing. Our promise to burn survivors is simple but powerful: You are not alone. You can get back to living. The Phoenix Society makes that possible by providing the necessary resources and bringing caring people together to share the journey. 37% Below you can also see the tremendous growth in Phoenix WBC since 2001 when we first partnered with the local burn centers and foundations to hold the Congress. We now include the fire service in our Phoenix Society family and have expanded our programming to meet the needs of attendees of every age. Our collective story has been growing stronger ever since Alan Breslau founded the Phoenix Society more than 35 years ago. It started with one man who had a vision and began working to create a reality in which no one is alone after a burn injury. He believed as I do that together we can support one another so life can be lived fully after a burn injury. Phoenix WBC 2001 Total 454 Phoenix WBC 2014 Total 1,038 687 Survivors & Family 327 Survivors & Family 283 108 Care Providers 19 Firefighters Care Providers 68 Firefighters Phoenix Burn Support Magazine | 23 | Issue 3 2014 Donor Recognition We wish to thank the following individuals and organizations for their contributions made between April 1, 2014, and September 30, 2014: Diamond Phoenix Project Paradigm Platinum Phoenix Kidde Golden Phoenix Bio-Oil Boston Firefighters Burn Foundation Common Voices Dr. G. Mark and Sandra Cramolini Illinois Burn Prevention Association Integra Foundation National Christian Foundation East Tennessee National Fire Protection Association National Fire Sprinkler Association New York Firefighters Burn Center Foundation Spiegel Burn Foundation Sprinkler Fitters Local Union 550 The 5th Commandment Fund Silver Phoenix Carbide Concepts Co LLC Cunningham Law Firm DC Firefighters Burn Foundation Edith Blodgett Legacy Fund of The Brookby Foundation IAFF Charitable Foundation InsurMark, Inc. Mölnlycke Health Care Novartis Pharmaceuticals San Jose Firefighters Burn Foundation Storis Inc. Swartz & Lynch Bronze Phoenix Abco Peerless Sprinkler Corporation Altair Corp Chicago Firefighters Union Burn Foundation Chick-Fil-A, Inc. Children’s Burn Foundation Combined Federal Campaign of the National Capital Area Community Tissue Services Dematic Employee Association Firefighters’ Burned Children Fund CharlotteMecklenburg Firefighters’ Burned Children Fund Gaston County Chapter Firefighters’ Burned Children Fund Mount Holly Chapter From Tragedy to Triumph Foundation Dr. David G. Greenhalgh and Kathy B. Greenhalgh Grossman Burn Foundation Brian and Jean Hall Vinod K. Jindal Walter and Wanda McLaughlin Andrew D. McLean Gerhart and Ruth Schuebel Chief Ronald J. Siarnicki Dr. Lynn and Pat Solem The Taco/White Family Foundation Tulare Firefighters Association West Hills Hospital & Medical Center Lon and Patricia Wojtowicz Supporter Amy Acton, RN, BSN Michele Anderson and Frank Nickerson Anonymous Sarah and Joseph Bazey Douglas Beebe Benevity Dennis and Donna Bosch Nancy Braudrick Linda and Carl Carpenter Charitable Flex Fund Karen Colligan Kathryn L. Comtois Kevin Cook and Jill Sproul Daniel F. Cosgrove Michael F. Courtney Elizabeth Dideon Hess, LSW Denise and George Doherty William J. Dominic, MD Courtenay Dunn Exelon Corporation Norene L. Fagan-Blanch Darren F. Fell Carolynn E. Ferris Firefighters’ Burned Children Fund Catawba Chapter Firefighters’ Burned Children Fund Watauga County Chapter David Gagnon Gary Gokey Melinda S. Goodrich Alan and Teresa Goss Suzanne L. Haar Maryanne D. Helffrich, MD David A. Henderson Lisa Hendrix, RN Brennon and Vicky Hope Gregg R. Huennekens Illinois Tool Works Foundation Barbara A. Kammerer Quayle and Ken C. Quayle Gary S. Keith Areta Kowal-Vern, MD, FAAP, FCAP Rhonda J. Kurtz Lancaster County Firemens Association, Inc. Jeanne LaSargeBono Kenneth and Lindsay Leeberg Stacy and Tom Lyons Making Grade, LLC Mike Mansbach Steven Marbes John McCall Darlene L. Meacham Michelle Mercier Gail W. Miller Peter K. Normandin North Carolina Community Foundation David and Martha Parker Thomas Pessotti Priority Health Robert and Patricia Reed Bonnie Reid Lyle Sathoff Scaffold Service Inc Curtis and Magaly Schaeffer Steven and Cheryl Schneider Marc Schupan Derek Silva Dr. Guy Silva and Mary Silva Dana Smith Kim, Jordan and Ben Souza Standard Insurance Company Employee Giving Campaign Robert Stangler Nilda L. Claudio Stevens James Stoddard Alden and Gustavus Taylor Thoreson Promotions, LLC TMMC Inc. Victim 2 Victor Inc. Waltham Lions Charitable Foundation Wiginton Fire Systems Friend 3 Rivers/Pennsylvania West CFC Carl R. Abramson Don Adamson Kathryn D. Agerbeck Edith H. Ajello Alan and Dorothy Akerson Joseph M. Albers Walter Alexander Kim Almquist Tiana L. Alves Laurie Amaral AmazonSmile Foundation American Fire Sprinkler Association Phyllis Anchorstar Tina Andersen Dale E. Anderson Joan and Scott Anderson Patricia J. Anderson Rachel Anderson Wayne R. Anderson Glenn W. Angers Anonymous Lou Arasi Area 1 Fire Inspector’s Association Arizona Combined Federal Campaign Ashi Arora Maria Ashley Alicia R. Assad Atlas Private Wealth Management Janet and Forrest Aurentz Automatic Fire Alarm Association of New Jersey, Inc. B.U.R.N.S. Dr. Karen L. Badger and Dr. David Royse Linda M. Bailes Ed Bailey Clifford and Priscilla Baker Dolores Baker Steven Baker Dave Balardini Megan Baldonado Stephen F. Banks Frank Barber Lani Baris Giuseppe Barisan Marilyn Barlow-Oldrid Jeffrey P. Barrett Stan and Kaye Barrett Deborah Bateman Tim and Melissa Baynum Carla Beaurline Karen L. Beck Marc Becker Mary Jane Beehner Mark P. Beggan Leatrice and Stanley Bell Patricia Bell Craig D. Bender Gerald Bennett Michele M. Bennett LouAnne Berg Berkley Donuts, Inc. Michelle S. Berning Biomentor International Inc. Barbara R. Birmingham, CRNP Chris Bivins William Bivona Timothy S. Bjork Chris and Sandy Black Patricia Blakeney-Creson, PhD Richard D. Bledsoe Sigrid Blome-Eberwein, MD Christian and Susan Blough Cassie M. Bonngard Timothy Bopp Lorraine Bosch Vicki Bosch Deborah L. Bostic Keith and Marilyn Bowers Leo R. Bozzuto Gretchen Branam Mary K. Brand Angela A. Brandolino Bravelets LLC Steve and Karen Bray Alan and Delwyn Breslau Matthew J. Bresnahan Richard and Susie Brigham Michelle Brightman Amy and Bradley Brinkman Joan Britland Nicole Britland Catherine A. Brizzell Chris and Cathy Brockett Megan Bronson, RN, MSN, CS Christopher Brouch Eric Brouch Kelley Brown Laura and Jeff Brown Randy and Susan Bruegman William and Regina Buhr Douglas J. Bull Raymond F. Bullock, Jr. Jan Burger Anthony F. Burke and Stacey Loen-Burke Barry and Patty Burkhart Burn Foundation of Central New York Sandra K. Burns Camelia G. Burtea Phoenix Burn Support Magazine | 24 | Issue 3 2014 Deana G. Butler Ashley M. Byrne Kimberly Calman Magdalena E. Campos Martha Campos Alejandro Carbajal William R. Card Michael H. Cardozo Care Plans For Life, LLC John P. Carey Lorraine Carli Rita Carole Darrell T. Carpenter William and Jeanette Carraway Stephen M. Casey Cynthia D. Cedeno Andy Chacon John and Pamela Chadwick Kelly A. Chadwick Anna P. Chambers Beverly and Frederick Chapman Robert and Judith Chastain Lily Chatterjee Julie Che, RN, MSN Chesapeake Bay Area Combined Federal Campaign Chicago Backflow Inc. Pauline Chisholm Piotr Chmielewski Holly Christian Susan Churcher Cinema Secrets, Inc. Anthony N. Ciuffo David and Amy Clark Clark, Hunt, Ahern & Embry Eric and Brenda Clausen Corrine and Peter Clavey Cory B. Cleary Andja H. Clegg Philip and Ellie Coffman Neil Cohen Kelsey Colburn Chuck Coletti Scott Collard Susan Colligan Cathi Colman Judith A. Colman Columbus/Ft. Benning Regional Combined Federal Camplaign Combined Federal Campaign of Eastern Massachusetts Combined Federal Campaign Overseas Elena Combs Odette Comeau and Foster Sayles Comprehensive Rehabilitation Consultants Inc Chief Dennis Compton Dianne P. Coonan Chris and Nancy Cox Alexander and Susan Coxe Charlena Cozza John Crawford Cull Group Carey and Jason Cummins Diron Cundiff and Jeni Yielding Austin and Laura Curtin Kenneth J. Czillinger D & S Setting Tools William and Nicole Dahmen Tom Day Steve and Marie Dean David J. Dedrick Pablo DelaRosa Howard Delinck John Dellacava Todd J. Denison Rebecca F. Denlinger Denver Fire Fighters Burn Foundation John S. Derr Sandra DeSimone Detroit Fire Fighters Association Leeann Dias Marjorie Dias Peter Disalvio Brian Doherty Chris Doherty Patrick Doherty Wendy E. Domster Virginia T. Donelson, CRNA Douglas and Gail Dooley Ted A. Dosch Chuck and Rosemary Dougherty Michael and Laura Driggers Lindsay Drisko Marylou K. Drohr Karen M. Dubiel Susan Dunfield Gerald and Regina Dunn Eileen and Raymond Duval Rebecca and Matthew Duval Robert and Donna Duval Eastern Pennsylvania and South Jersey CFC Sandra and Robert Edenfield Thomas and Beth Edge Janet E. Edwards Kathleen Egan John A. Einum Thomas W. Elder Tom Emme Chrissy Engelhardt Raeleen Epperson Alana Epsten Allen and Sherry Erdmann Mark K. Erickson Holly L. Ernst Kate Errett Clair Estefanos Lynn R. Falzone Michele Farah Chief Ronald R. Farr Jason and Barbara Fazio Martha Feichter Kenneth Fell Lori and Matthew Ferdock Susan and Neil Fineman Firefighters Burn Fund Manitoba David Fischler Kevin and Robin Fitzgerald Denise L. Flanagan Leslie Flowers Robbie L. Flowers John P. Foley Michelle Foltz Christie Foremsky Lawrence Forman, M.ED Fort Campbell Area Combined Federal Campaign Bethany Fossella Robert Foster, Esq Dennis and Charlene Fowler Jonathan Franzen Edward and Gloria Freeland Emma Freeland Emily Frei Candace A. French Daniel French Jane and Brian Friolet Michele R. Frost Chelsea Fu Lu Ann Furtado Donna S. Gallegos Shawn and Melanie Gardner Elaine Garlock Linda and Gerard Garren Bev and Bruce Gartner Gateway Combined Federal Campaign Kathleen Gauthier Megan Geerling Dorothy D. German Michael H. Gibbemeyer Marsha P. Giesler Joanne P. Gilbert Jay Gildea Dan Gilles Steve Gillispie Dr. Marie Giordano Give With Liberty Michelle Glassmann Suzanne M. Glazer Global Health and Safety LLC Brenda K. Goehring Joe G. Gonzales, MD Carlos Gonzalez Cara Goodman Bob and Barbara Goodrich Google Inc Kelly A. Gorman Sarah Goschy Judith Graf Grande Prairie and District Burn Society Tara L. Grant Mollie and Bryan Grass Ellen Gray Jeffrey Gray Samantha Grear Greater Mississippi CFC Olin L. Greene Jay Greska Ellen E. Griffith Jeanne Griffith Martin Grillo Michael and Sharon Grodi John Gropper Thomas K. Guelzow, Esq Anthony R. Guertin Andrew J. Gurvey Kara M. Guyton David and Heidi Habel Paul Hahn and Charmaine Rimple Art Hall David C. Hall Kevin E. Hall Shanna Hall, BSN Stephen Halliday Michael Halperin Richard and Mary Halpert Susan Hambly, MD Stephen and Judith Hamelin William N. Hamilton, Jr. Mark R. Hanlon Kerri Hanson Debra Harkins Janet Harman, RN Gary R. Harnois Dale Harper Doreen L. Egarr-Harris Jennifer M. Harris, LICSW Kevin Hart Larry Hartwig John R. Harvieux Robert and Sharon Hasapes Loriana Hatch Deborah Gage Haude Hawaii Pacific Area Combined Federal Campaign June Hazelwood Heart of Alabama Combined Federal Campaign Heart of West Michigan United Way Debra Helms Elizabeth A. Helstad Ruth A. Henneman Caroline and Samuel Hennig Dana Henry and Sarah McDonald Frank and Linda Hensley Jaime V. Hernandez Linda J. Hertz Jill Hessberger Christine and Mark Hillgartner Mary Ellen Hogan, RN Suzanne S. Hojara Bruce Holbert James Holmes, IV MD Raymond and Elizabeth Hook Eileen Hoover Howard and Bonna Hopper Nancy Horch Heather Hubbard Michelle R. Hughes and Clara J. Smith Cynthia Hunker Nick and Lea Hunt Doug Huskey Rebecca Huss Institution Of Fire Engineers Shannon M. Jackson Todd Jackson Ben D. Jacobus Erin Jamieson Gail Janas David and Mary Jans William A. Jennings, Jr. Marion Jerue Shannon L. Jipsen Victor Joe, MD Steve J. Joerger David and Margaret Johnson Karen S. Johnson Lisa and Russell Johnson Lori Johnson Michael Johnson Susan Stack-Johnson Cheryl A. ThompsonJohnstone Elizabeth and Fred Jones Jenny M. Jones R. Bruce and Janet Jones Jerry E. Joullian Rick Joy Steven E. Joyner, Jr. Kevin and Linda Jurus James and Mary Kacmar E. Tonas and Maureen Kalil Barbara Kanegis Jonathan and Carol Karalekas Donna M. Karam Barbara Vrankar Karim Richard and Judith Karmolinski Kristin L. Kasputis Edward and Josephine Kavcak Joanne Kearney Nicole and Mark Kehoskie Lindsay E. Keith Shannon and Derek Kelley Mike Kelsey and Corrina O’Brien Kelsey William B. Kerrigan Sara M. Kirschbaum Kent L. Kiser Stanley J. Klakulak Karla Klas Dr. Robert L. Klein and Karen Klein Connie Klingback Jeremy Klingback Millayna Klingback Darlene Knauss Jerrold Knee, Esq Michael and Lana Knight Glenda S. Kohls James and Denise Koonce Claudine Kos Connie Kos Donna Kos Emily Koss Stephen Kostopoulos Andria Booth-Kowalczyk Rozann Kraus Bruce A. Krause Fred Kroll Mona Krueger John and Kathleen Kucharski Navin Kumar Tracy L. Kunstman Robert J. Kvidt Nan E. Kyllonen Sallie Kyllonen Thomas Lamora Roberta LaPorte Debra Larsen Lynelle and James Laventure William and Nicole Leahy Mark Lehman Miriam and Scotty Lejonvarn Leo and Connie Lemieux Glenn Lemke Toby Levenson Tom and Cathy Lia Jeannette and Joe Lind Anita L. Lituri Carlos Lobato Marilyn D. Lodoen Timothy P. Loftus, Esq Tracy Long Alexa Loukides Fabiana I. Lowe Anthony Lucie Jim Lucie Reagan L. Lucie Brian M. Lutz Mary and Mike Lutz James and Irene Lynch George and Hillary Lyons Theresa Macaluso Donald A. Macchioni Mr. Connie R. MacDonald Christine R. Mackleit James W. Madson Pamela F. Mahoney Brenda S. Millay-Mai Marianne C. Majewski Michelle Malone Walker C. Malone Brian Maltby John and Gabrielle Mangan Thomas J. Marbes Richard and Alice Marek Chris Marino Julie C. Marra William F. Marsh, DDS Joan E. Marshall Donald and Tracy Martin Jessica B. Martin John Matthews Vicki May James and Sherri Maymon Jaime McCallum Thomas J. McCarthy Laura McCullough, PT Amanda McCuskey Leslie A. McDonald Charles McElroy Phoenix Burn Support Magazine | 25 | Issue 3 2014 James McFadden Catherine A. McHugh James T. McHugh Mark McIntosh Darryl and Andrea McLetchie Elizabeth McLoughlin Kevin and Ann McNabb Rhonda L. McNamara Mike McVeigh Medical Art Prosthetics, L.L.C. Tracey Mefford Barbara and Donald Meinecke Mary Messier Metropolitan Rehabilitation Services Inc Kathy and Paul Meulemans Robert C. Meyer Paula M. Micciche Humphrey Miller Dr. Sidney F. Miller and Barbara L. Miller Sara-Jane Milne Cheryl C. Milot Jessica Mink Shayne D. Mintz Minuteman Press Kaz and Pat Miyagi Joseph M. Mlakar, MD, FACS Don R. Mleziva Belinda and John Monts Bradley and Karen Monts Colleen P. Moore Wayne D. Moore Samuel J. Moore-Sobel Michael and Karen Morgenstern Sharon M. Morien Michael Morin Jim and Sue Morris Muriel Motard Alan Mount Melissa M. Mowry Mike and Leigh Moynihan Mulberry Consulting Steve Muncy Dennis and Linda Murphy Nancy Murray Frank G. Muscarello Jeffrey K. Naslund Nassau County Firefighters Burn Center Foundation Amy M. Nelson Diane Nelson Pat and Ron Nelson Luis Nevarez Toni Newton Catherine J. Noga Judith Nonnenmacher Michael R. Normant Sam Normington North Coast Ohio Combined Federal Campaign Northeast Georgia Health System Northern Illinois Fire Sprinkler Advisory Board Julie Notarangelo Nursing Consultation Services Ltd Shawn M. Oberg Sharon O’Brien Taylor Oddino Derek Odell Sherie Oh John Ohrenberger Cynthia Oliver Carol Olson Kathy Osman Maddy Osman David J. Ottolini David Owens Raymond Paiva Liliana Palacios Michael Palm Deborah K. Palmer, Esq Mary Panarello Mike, Mel, Nick and Will Panarello Hye Young Park Thomas and Kate Pearson Kate Peck Jeffrey and Kathleen Pelchat Catherine Pelkey Charlene Pell and C.H. Frazier Rosemary Pembroke Peninsula Combined Federal Campaign John V. Pesich George and Joanne Pessotti Timothy Petracca Judy L. Phillips Kelly Philson Andy Piercy Paula Pittenger Parnel and Mary Plante Kenyelle S. Plummer Lynn M. Podoski Dana Potter Faye Potts Justina Powell Sally Powell Steve Powell James H. Presley Raphael Pristoop Nancy M. Quigley Kathy Raith Sue A. Ramaglia, RN, BSN Paul H. Ramponi Sheryl Ramstad, RN Barbara and Jim Rannazzisi Ken Rapp Taylor Rasley Judith A. Rawnsley Mark W. Raymond Marybeth Reddy Peter Redfern Greg Reeves Mary P. Reeves Reg Richard Inc Dawn and Carl Renzetti Julie Reynolds Mark M. Reynolds Susan Reynolds Rhode Island and Southeastern Massachusetts CFC Rhode Island Good Government PAC Mark M. Ribera, Jr. Karen and Reginald Richard Anne M. Richardson Bill Rietjens Siena Riffia Ruth Brubaker Rimmer, PhD Tyler Risk Max and Constance Roach Bahram R. Roashan Joseph Roberts Missy Robinson Cole Robinson Robin Robinson Katharina Rock Laurie and Jeffrey Roderick Linda M. Rogers Elaine and Mike Rojas Sharon Ross Ross Tilley Burn Centre Mikki J. Rothbauer, MSW Terry T. Allen-Rouman Michael Rubin Steven J. Rudis Gregory and Karla Runyon Neil Runyon Tara Ruscigno Gayle C. Russo Gina M. Russo and Steven Sherman Sierra Russo Logan Rutherford Cindy E. Rutter, RN, BSN Tom Ryan Saba Colman & Hunt PC Marcia and Andrew Sabol Sacramento Fire Department Susanna and Michael Salge Saltz, Mongeluzzi, Barrett & Bendesky, PC Tracey Sanguinet Amanda and Tylor Sardeson Saskatchewan Professional FireFighters Association Burn Fund Nicole A. Sautro James Schafer Laura and Jeffrey Scharf Carmine L. Schiavone Julie Ann Greif Schmidt Kathryn A. Schmitt Julie and Richard Schultz David and Michele Schury Samantha A. Scimeca Lauren Sclafani Vivian M. Scott Scott’s Landscaping, Inc. Maryann Seebeck Cynthia J. Sekowski, PhD Select Resources LLC Kim Settles Gautam Shah Karl and Carol Sharicz Aaron Shaw Maxine Sheffield Leatrice and David Shippee Blake Shugarman Silicon Valley Community Foundation Ricardo A. Siller Adrene Silva Danny Simkewicz Sabrina Simpson Doug and Pam Sitzler Kimberly L. Slack Michael and Cindy Sliwinski Mary Sloan Kayetta A. Slocum Jeffrey A. Smidt Keith W. Smiley Donald J. Smith Karen L. Smith Irene Snyder Rajiv Sood, MD, FACS David P. Souza John E. Sperle Charles E. Sproul Sandra Stabile Tara Stackpole Karl and Judith Stadler Heidi K. Stennes Thomas and Eva Sterley Amy M. Stevens Carol and Michael Stewart Nicholas Stone Todd A. Straka Jay H. Strohl Jim Sullivan Patrick R. Sweeney Nancy Swihart Swiss-American Products, Inc. Tisha Taba, OT Glen and Delores Tabron Maureen Moriarty Tamburro Masaaki Tanaka and Noriko Tanaka Jennifer Tantillo Eric Taylor Diana Tenney and Gerard LaPerriere Marylyn L. Tesconi Jennifer A. Tessitore John R. Testoni and Olivia Costa The Guarantee Company of North America Karen and Timothy Thery Brindha Thinakaran Lynn and Heather Thomas Joe Thuillier Pat Thuillier Theresa A. Thuillier Dr. Christopher and Simonida Thurber Stephanie Toenges Catherine A. Tomaso Larry Tompkins Torbot Group Inc - Jobskin Division Fresia Toro-Fuenzalida Torrance Memorial Burn Center Joe and Santa Toscano Total Contact, Inc. Timothy and Carolyn Travers Christopher and Holly Travis Donald and Susan Trentel Gary and Jean Tresch Eunice F. Trevor Alexander and Pearlie Trotter Rita M. Tully Rodney A. Turner Kenneth and Patricia Umbarger Kay and Steve Unguran United Way of Rhode Island Laurie Vago Varnum LLP Jose F. Ventura Winfield L. Verdow Steven P. Vieira Barbara Vinacco David Vogel and Ellen Ezorsky Beth Vosmeier Luke Walder Kim Walker Eric Wall Marlene M. Waller Brian Walsh JoBeth Walt Karen Wandersee Francesca Warburton Tony Warnick Jeremy Warriner Sandra and William Weinhardt Kenneth and Tammy Welch Jennifer L. Weller Walter Wenzel Scott and Mary Wheatley Alayne White Kelly and Michael White Jennifer Whitestone Ben Whitfield Miriam J. Whiting Edward and Diane Wiebe Anastasia P. Williams Essie Williams Keith E. Williams Mike E. Williams and Kelly Ransdell Ashley Wilson Dawn Wilson Brian J. Winters John and Janet Wojtowicz Amy Wood Chris Woodcock Woonsocket Fire Department Paul and Deb Worachek Duane Wright and Bernadette Martinez Wright Linda and Gary Wright Barbara C. Yackel Corazon M. Yee Joseph and Sherry Yost Ida Young Robert Yount Yourek Family Sandra Yovino, RN Charles Yowler, MD James Zarella Matthew Zeller Jonathan Zielinski Josh and Kim Zisa Fred and Edith Zucker Gifts-In-Kind American Massage Therapy Association - California Chapter NeoStrata Mercury Head Gallery Memorial & Tributes IN MEMORY OF CHRISTY CHRISTIAN Holly Christian IN MEMORY OF CARL COUGHLIN American Fire Sprinkler Association IN MEMORY OF JEAN ELAINE IRWIN JOHNSEN Joan and Scott Anderson IN MEMORY OF DONNA MARIE Rita M. Tully IN MEMORY OF IRIS Y. MILLER The Guarantee Company of North America IN MEMORY OF JACK VANDENBURGH Nicole A. Sautro TRIBUTE TO DAVID AND CARLY BOWERS Philip and Ellie Coffman Chuck and Rosemary Dougherty Diane Nelson John V. Pesich TRIBUTE TO PETER CLAVEY Keith W. Smiley TRIBUTE TO BENJAMIN COMTOIS & COPYRIGHT CLEARANCE CENTER IN RECOGNITION OF THEIR SON AND FRIENDSHIP Kathryn L. Comtois TRIBUTE TO BRIEN DEWS Martha Campos TRIBUTE TO RYAN DOUGLAS Vinod K. Jindal TRIBUTE TO JOHN FAIRBAIRN David C. Hall TRIBUTE TO JOANNE GRAY Give With Liberty TRIBUTE TO STEVE JOYNER, SR. Steven E. Joyner, Jr. TRIBUTE TO BARBARA KAMMERER QUAYLE Beverly and Frederick Chapman TRIBUTE TO GARY KEITH Lindsay E. Keith TRIBUTE TO KENNETH AND LINDSAY LEEBERG wedding Kenneth Leeberg TRIBUTE TO MARY LUTZ Brian M. Lutz IN MEMORY OF BETTY LOU WOJTOWICZ Anonymous Donor Eric and Brenda Clausen Janet E. Edwards Holly L. Ernst Ben D. Jacobus Shannon L. Jipsen Miriam and Scotty Lejonvarn Marilyn D. Lodoen Scaffold Service Inc Julie Ann Greif Schmidt Dr. Lynn and Pat Solem Susan Stack-Johnson Heidi K. Stennes John and Janet Wojtowicz Matthew Zeller TRIBUTE TO JOHN O’LEARY Northeast Georgia Health System IN MEMORY OF LORRAINE DELINCK Howard Delinck TRIBUTE TO BILL VISNAW Suzette Henley TRIBUTE TO SURYA PALANISAMY Nithya Palanisamy, MD TRIBUTE TO SANDY AND DARYL PHILLIPS AND PHILLIPS STEEL COMPANY Barbara A. Kammerer Quayle and Ken C. Quayle TRIBUTE TO DAVE SLUYTER, PAUL DAVIDOFF & MIKE ANDERSON Richard and Mary Halpert TRIBUTE TO SARAH BAZEY David Owens TRIBUTE TO DONOVAN WILLIAMS David C. Hall TRIBUTE TO KATHERINE “KATIE” BOSTIC Deborah L. Bostic TRIBUTE TO ESSIE WILLIAMS William F. Marsh, DDS Judith A. Rawnsley Phoenix Burn Support Magazine | 26 | Issue 3 2014 TRIBUTE TO MY SON Marilyn Barlow-Oldrid Be a Phoenix Champion all year long… Become a monthly donor today! For less than $1 a day, you can give survivors and their families the peer support and tools needed to re-build their lives. Your automatic monthly gift provides reliable support and the promise of a brighter future for survivors and their families. Join today at www.phoenix-society.org/monthlygiving PHOENIX CHAMPIONS - MEMBERS OF THE PHOENIX SOCIETY MONTHLY GIVING CLUB Deborah L. Bostic Anthony F. Burke and Stacey Loen-Burke Kerri Hanson Dr. Lynn and Pat Solem Tony Warnick BENEFACTORS SOCIETY Honoring individuals who have made provisions for the Phoenix Society within their estate plans or life income plans. Have you remembered The Phoenix Society? Please let us know so we can include you in our Benefactors Society. Anonymous George Araujo Sarah Bazey, B.A., OPM Bruce Berger Gary D. Boller Trust Deborah L. Bostic Alan and Delwyn Breslau John P. Capanna Antoinette M. Coppola Suzanne, Jason, Eric, Lynne & Kari DeLorenzo Emma Freeland Ira Gruber Richard and Mary Halpert Janet Harman, RN Jay Heying Patrick C. Horan Barbara Kanegis Rosanne Klass Alan C. Kritta Andrew Lee Mike and Mary Lutz Debra Woodliff Christie and David McKnight Hugh R. Stewart Gladys Vose Wright/Martinez Michelle Mercier William and Sandra Weinhardt Gail Miller Family Trust Humphrey Miller Chris and Karen Noles TOM & MARY HESSEL Joanne Pessotti Ken and Barbara Quayle ENDOWMENT FUND Gregory and Janice Roach Sandra Rose DEARBORN FIRE FIGHTERS Cynthia Sekowski, Ph.D. BURN DRIVE ENDOWMENT FUND Julie Spiegel Board of Directors Officers Patrick C. Horan, President Burn Survivor and Volunteer Sparta, NJ Sarah Bazey, Vice President Burn Survivor Owner, Simplex Construction Inc. Minneapolis, MN Directors Contact Information Anthony F. Burke Community Chapter Executive American Red Cross Serving Eastern South Dakota Sioux Empire Chapter Sioux Falls, SD Amar Patel, DHSc, MS, NREMT-P Director, Center for Innovative Learning WakeMed Health & Hospitals Adjunct Instructor UNC School of Medicine Raleigh, NC Lorraine Carli Vice President of Communications National Fire Protection Association Quincy, MA Peg Paul President, Peg Paul & Associates Frankfort, IL Donald Cheley President, Cheley Colorado Camps Denver, CO Karen Colligan Founder & Principal, PeopleThink San Francisco, CA William Leahy President, New York Firefighters Burn Center Foundation New York, NY J.R. Martinez Burn Survivor, Military, and Actor Studio City, CA Vickie Pritchett, Secretary/Treasurer Director of Public Fire Protection National Fire Sprinkler Association Pleasant View, TN Timothy E. Sendelbach TES2 Training and Education Services FireRescue Magazine (Editor) Las Vegas, NV Jill Sproul, RN, MS Burn Survivor Nurse Manager Regional Burn Center at Santa Clara Valley Medical Center San Jose, CA Mike Williams Investigator, Harnett County Sheriff’s Office Vol. Firefighter, Northwest Harnett Fire Dept Fuquay Varina, NC The Phoenix Society, Inc. 1835 R W Berends Dr. SW Grand Rapids, MI 49519-4955 Phone: 616.458.2773 Fax: 616.458.2831 Burn Survivors may call toll-free 1.800.888.BURN (2876) Web Site: www.phoenix-society.org E-Mail: [email protected] Staff Amy Acton, Executive Director Sara Bruinsma, Administrative Assistant Amy Clark, Program Consultant Megan Geerling, Development Director Kerri Hanson, Office Manager Jess Irven, Youth & Family Program Contractor Jeanne LaSargeBono, Business Director Pam Peterson, Program Director Tammy VanMeter, Database Coordinator Karen VanSprange, Administrative Assistant Susan Wise, Administrative Assistant Megan Yankee, Development Associate Note: The Phoenix Society does not endorse products or services, but is committed to providing information as it relates to the burn community. Trish Acton, Phoenix Burn Support Magazine Layout & Design Maureen Kalil, Phoenix Burn Support Magazine Editor Burn Support Magazine is published by the nonprofit organization, The Phoenix Society, Inc. ® 1835 R W Berends Dr. SW | Grand Rapids, MI 49519-4955 | Printed in USA | © Copyright 2014 | ISSN 1544-1857 Phoenix Burn Support Magazine | 27 | Issue 3 2014 Non-Profit Org. US Postage PAID Grand Rapids, MI Permit No. 679 The Phoenix Inc. 1835 RW BerendsSociety, Dr. SW Grand Rapids, MI 49519-4955 1835 RW Berends Dr. SW Grand Rapids, MI 49519-4955 616.458.2773 | 1.800.888.2876 fax: 616.458.2831 616.458.2773 | 1.800.888.2876 www.phoenix-society.org fax: 616.458.2831 [email protected] www.phoenix-society.org [email protected] We’ve Launched Our New Website! Our community now includes more than 48,000 burn survivors, their loved ones, medical professionals, and fire service members—plus supporters like you! There are always new stories to share and more people seeking information about life as a burn survivor. That’s why we launched a new website, with more resources, stories, and ways to connect with peers. We hope you find the new site exciting, with helpful resources and a compassionate place to get connected to others in the burn community. With the launch of the new website comes a number of new and enhanced features including: •NEW resources and information for burn survivors and their families, including The Journey Back e-book • A NEW website-integrated Burn Community Blog • A NEW Monthly Giving Option, as well as the opportunity to manage your online contributions and track your personal online giving history • Phoenix Connect, our online community—the secure home of weekly Peer Support Chat, Survivor Stories, and Blog comments, as well as the NEW online Forum, where you will be able to ask questions and find information www.phoenix-society.org