Transformation That Begins With a Phone Call

When you call the Phoenix Society, you may notice something unique in this fast-paced world of automation–you receive a warm and personal “hello” from a member of the Phoenix Society staff.  And something truly special happens when a burn survivor, family member, health care professional, or fire service member calls in need of support.

 Our staff of 9 people greets thousands of calls each year.  Those calls are quickly connected to the most appropriate member of our program team who listens to the caller’s need and works through a course of action for each individual. Although this is just one of the many hats our program team wears in their work at Phoenix Society, it is treasured.  “These calls take me back to my days as a critical care nurse and allow me to connect personally with those we are here to serve” says Pam, Phoenix Society Program Director, who has been a registered nurse for 22 years.  “For so many, their phone call is their first connection to support and the beginning of a transformation.”

A Life-Changing Phone Call

Maureen’s first call to the Phoenix Society in December 2012 was one of those beginnings.  Maureen explained that she was burned at the age of 3 when hot oil was poured on the top of her head. However, the point she remembers really shaping her life was the first day of kindergarten in the 1950s. She arrived in class with a scarf tied over her head as she wore every day to cover her scars. It was when her teacher, unaware of her injuries, made her stand and remove her scarf that she froze in panic. Finally submitting to her teacher’s demand, she removed her scarf for the first time in public and remembers the gasps and comments that followed her as she ran down the hall to escape. Maureen, her family (including 6 siblings), and the community were unaware and unprepared to help her overcome the challenges she faced growing up with a burn injury.

“For so many, their phone call is their first connection to support and the beginning of a transformation”

For Maureen, this led to a life of isolation and constant struggle with confidence. The fear of people’s reactions kept her from taking off her wig or scarf and made it impossible to engage in daily life. She avoided experiences like getting a haircut, going swimming, or taking a walk on a windy day. It was easier to keep her scars hidden.

Fifty-seven years after her burn injury, in an effort to overcome her depression and connect with someone who could understand her feelings, she went to her local library to search the Internet for help. She searched “trauma,” then “burn trauma,” and that’s when a link to the Phoenix Society website appeared. She explored the online articles and resources with eagerness. One in particular helped “pull her out of her depression,” she recalls. “I read the Adults Burned as Children article and thought . . . ‘this is about me, I am not alone. . . these feelings are normal!’ I felt validated. A weight lifted and I called the Phoenix Society the next morning.”

Something Maureen said really struck Pam during that first conversation, “I want to participate in life instead of letting it pass me by, but I don’t know how,” she remarked. That call for help was the beginning of her transformation.

A Plan of Action

Over the next year Phoenix Society worked with physicians and social workers at the SOAR hospital closest to Maureen to further evaluate her physical scars, helped locate counseling in her local area and educate the center on the challenges of burn trauma, and walked Maureen through our online learning programs specific to empowering survivors with social skills. We also became her support system through regular emails and phone calls.

When Maureen first called, she had never met another burn survivor and “wanted to fix her burns.”  After walking through the process together, she knows there is no quick fix for a burn injury, but now has tools to help her live life. It has become a team effort over the last year as most of us have had the pleasure of speaking with Maureen and were all very excited to finally have the opportunity to meet her in person.  With the assistance of a Phoenix Society George Pessotti WBC Attendee Scholarship, she was able to attend the 2013 World Burn Congress in Providence, Rhode Island, and for the first time meet not only the staff with whom she had been communicating, but, most importantly, hundreds of burn survivors just like her.

For Pam, meeting Maureen at World Burn Congress was particularly rewarding.  “I know the courage it took for her to step out of her house and fly to Rhode Island.  It is so gratifying to see her blossom, make friends, attend sessions, and be empowered to live life,” she says.   Describing her experience at WBC, Maureen said, “I finally feel like I am human . . . accepted and loved.” 

Looking back at the feelings of isolationshe had endured throughout her life, Maureen remarked, “I wish I knew about this 57 years ago.” She encouraged other survivors to reach out, saying, “The sooner you call Phoenix Society for help, the sooner healing beings.  But, it’s never too late!”

Our Goal for 2014

Every day we receive calls from
survivors like Maureen, but for every call we receive, the reality is there are thousands that have not yet connected to the resources and support they need to truly live life. In the U.S. alone, 450,000 people are treated for burn injuries each year.

The hands-on experiences of the Phoenix Society program team have made it clear that

“I finally feel like I am human… accepted and loved”

our primary need, as we move into 2014, is to reach the thousands who are still struggling alone and are unaware that the Phoenix Society is here to help them on their journey of healing. Second, we must have the staff and resources necessary to respond to the increasing number of calls we are receiving.

Your donations made Maureen’s transformation possible. Your continued support ensures we can reach survivors sooner in their recovery and be able to guide them to the support they need to overcome their struggles. What a difference you make!

Your donation supports Phoenix Society programs that provide burn survivors with the tools and resources they need to thrive again

Wrapping up our Skills and Moving On at UBelong

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

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

UBelong Participants Learn that Bullying is Never OK

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

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

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

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

Chris Gilyard Describes her Journey – “Walking Through Ashes”

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

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

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

Chris stated, ” I felt so alone”.

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

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

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

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

UBelong Participants Experience Expressive Art!

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

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

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

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

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

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

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

UBelong Participants – Come Get to Know Us!

UBelong participants, Express Yourselves!  The theme of this year is all about expressing who you are and what you think.  Each person’s unique qualities, views, and strengths are here to be celebrated!  Come and get to know your new friends at the UBelong table tonight at the kickoff event.  Staff will have group and individual activities ready to help everyone meet new friends and feel comfortable and get ready to express yourself!  Come find us by the Rotunda.

Phoenix Society’s SOAR Training at WBC

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

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

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

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

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

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

Young Adult Workshop – Where are You At? Where Do You Want to Go?

Today’s Young Adult Workshop was all about where you’re at and where you want to go. YAW focused on a range of topics faced by young adult survivors, from independence and celebrating who you are; to finding your personal journey and where you want to be. This workshop brought together 18-25 year-olds who are ready to support one another, have fun, and talk about where they are going next.

Starting today, in the first part of the Young Adult Workshop, survivors talked more about the “personal journey” (celebrating who you are, but also getting to who/where you want to be). Our time together continues in activities Thursday evening, workshop part 2 on Friday (lunchtime for registered workshop participants), and during support groups (support groups open to all young adults).

Today, in two separate breakout tracks, we looked at confidence, goals, and support. One group focused on becoming role models within and for the burn survivor community. Look for them mentoring at UBelong, speaking at Open Mic, and reaching out to fellow conference survivors!

“Becoming an Effective Advocate” Workshop Offers Important Tips for Promoting the Cause

Becoming and Effective Advocate: Get Attention for the Cause Through Public Speaking, Politicians, and the Press

Brad Phillips is conducting a full-day, interactive workshop today for new and experienced advocates. (Pre-registration required).

Brad Phillips, president of Phillips Media Relations. author of The Media Training Bible and the Mr. Media Training Blog, and former ABC News and CNN journalist, is here today offering his extensive experience and renowned advice to World Burn Congress attendees interested in becoming Phoenix Society Advocates.

Attendees are learning how to attract media attention and deliver a memorable media interview, how to create and deliver a compelling speech, and how to convince lawmakers to join their efforts.

This workshop is full of energy and fun, and is teaching numerous techniques to the WBC attendees through lecture, video examples, group exercises, and demonstrations.

The “Becoming an Effective Advocate” workshop is focused on becoming a Phoenix Society Advocate and the home fire sprinkler issue, but those advocating for other issues and causes are also learning critical tips for improving their efforts as well.

Thank you to our workshop attendees for getting involved and helping bring attention to the cause!