Reflections of Phoenix World Burn Congress 2016

Words that come to mind:  listening, compassion, radiant, sacred space, sanctuary, hugs, sharing stories, vulnerability, courage, resilient, learning, openness, risk, safety, gratitude, celebration, wholehearted, spiritual, growth, Namaste, love, warmth, heartfelt joy, tears, beauty, depth, struggle, opening, opportunity, embracing heartache, circles of connection, engaged, fear, grace, spurring others on, community, kids, friendship, remembrance, transformative, seeds for growth, hard to go home, survivors, joy, thrivers, sincerity, helping one another, connection, inspirational, hope

To be honest, it is mind boggling to even know where to start in sharing the experience of participating in the Phoenix Society World Burn Congress for the first time. Distilling just a few highlights from our time there has been one of my most difficult writing assignments!

 Phoenix World Burn Congress (Phoenix WBC) is a group committed to building a community to create a healing environment for those who have experienced a burn injury. The community is composed of burn survivors, families, nurses, firefighters, therapists, caregivers, doctors, children, youth and young adults. Add to them the wonderful folks who helped make Congress 2016 happen, including the large team of dedicated volunteers, the skilled AV (audio visual) Seals, the professional huggers, the image enhancement team, the leaders of breakout sessions and support groups, and the wellness team who provided massages and led yoga for participants. They were all astoundingly beautiful.

If you’ve read Stop Breathe Believe, you may recall I shared about the time I was first introduced to Phoenix WBC. I was in Cincinnati, Ohio in 2011 helping our daughter and her boyfriend as they were filming Temple Grandin for their documentary about autism and sensory disorders, Spectrum. We were in the same general area as the WBC convention, and I kept noticing these beautiful people who did not seem ashamed of their scars, some of which were quite significant. And as the weekend went on, I kept noticing the joy these people exuded. It was a remarkable time for me as I was in the process of writing about the concept of perspective—and saw how this group of people exemplified joy through obvious heartache and struggle.

I wrote about this experience in SBB. As I wanted to be sensitive to wording and how I portrayed the people who’d made such an impression on me, I asked Amy Acton, the Executive Director of Phoenix Society for Burn Survivors, if she could get someone to proof what I was writing. Amy apparently liked what she read and asked me to write an article for the Phoenix Burn Society magazine.

Then, as crazy things sometimes happen, two different members of their speaker team contacted me—neither knowing the other was calling. One team member had read the article and the other had heard me present a keynote in Texas. So, I got vetted twice for this engagement! I was so thrilled and grateful to be invited to be one of three keynote speakers for the event.

And I was also challenged. Did I have something to offer? I could, of course, talk about Stop Breathe Believe® and cultivating self- compassion...but I wasn’t a burn survivor. Would they relate to me?

What I’ve learned throughout the years is to be honest and open about my areas of expertise. When my colleague and I work with homeless vets, one of the first things we share is that we are not vets, and we’ve never experienced homelessness…so we’ll need them to teach us about what that’s like, and only then will we teach them what we know. So, in keeping with the idea of “practicing what you preach,” my green statement leading up to the conference was, “They did not ask you to come be a burn survivor, they invited you to share about Stop Breathe Believe and cultivating self-compassion.” I have no idea how many times I repeated that mantra to myself in the months and weeks leading up to the conference. I am also so grateful to Nancy Johnson, PhD, the Patient & Family Support Coordinator at the Burn Treatment Center of the University of Iowa Hospitals & Clinics, for inviting me to burn camp over the summer and spending hours with me helping me understand the trauma and experiences of the burn community. Here is a pic of Nancy with the Iowa group at the convention:

Roger, my husband and #1 encourager, was excited to be joining me for the conference in Providence, Rhode Island. You may recall that West Warwick, RI was the location of the disastrous Station nightclub fire in 2003. The toxic smoke, heat and the stampede of people toward the exits killed 100; 230 were injured and another 132 escaped uninjured. I recall watching the horrific scene on the news.

As we arrived at the hotel, we were greeted by firemen, volunteers and an amazing gentleman named Bruce who welcomed us all. All throughout the conference, I continued to notice Bruce reaching out to others, being kind, and extending grace and hospitality to so many! 

The first evening was the Walk of Remembrance, recognizing those who have lost their lives in fires.

The dignity and care with which the walk was carried out was a beautiful honor for those who did not survive. Many held pictures of lost loved ones as they walked up the hill toward the capital, where two firetrucks displayed the American flag. The Walk of Remembrance was a solemn, but significant way to begin the conference.

The first day of the conference, I met Michelle, a new friend at yoga. Here is a pic of us in our “non-yoga” attire.

Each day of the conference there was a keynote speaker, break-out sessions, support groups, programs designed specifically for the children and youth (age 7-17) and a program for the young adults (age 18-25). One of the most significant events for the adults each day was a session titled “Healing Though Our Stories – Open Mic.” As one who is a total believer of the healing that comes through sharing our stories, I was inspired to listen and get to know the survivors and their stories. The organization is very thoughtful in providing a safe place for people to come and share their stories with one another by emphasizing the roles of confidentiality and privacy. At times, open mic is the first time someone has had the courage to share their burn story. Tears, triumph, fear, courage, listening, loving, Kleenex and learning from one another are facets of the transformative journey and healing concepts of ‘You Are Not Alone’ and ‘Your Story Matters’ that are exemplified in Open Mic.

Roger and I most loved the precious moments of connection with so many. For some, it was brief moments of exchanges and hugs in the elevator. For others, it was significant discussions and understanding of their stories of pain, healing and hope. In yoga at closing, we often say Namaste, meaning the Divine in me honors the Divine in you. The teacher in me honors the teacher in you. The student in me honors the student in you. Roger and I truly learned from each person we got to know in the burn community.

One of the highlights for me was a deaf interpreter who taught me Stop Breathe Believe in sign language. You can view a quick video of Cheniene and me doing Stop Breathe Believe in sign language. I especially love how at the end of Believe, how you clasp your hands tightly together. What a beautiful picture of how we “hold” those things that are meaningful to us, such as our values and beliefs. What a beautiful picture of how to hold on to our green statements, our believe statements, or “believements.”

In addition to giving the keynote on Friday, I also had the opportunity to share with the youth (age 7-17). Oh my, what an age span for a breakout session! The challenge of being able to engage that group felt more overwhelming than the keynote presentation! I LOVE and ADORE kids of all ages and so wanted the time together to be beneficial. Thankfully, the program provided many trained volunteers and I could rely on their expertise in the discussions around the topics of Stop Breathe Believe and Overwhelmed Pie (which we changed to Overwhelmed Pizza for this audience). Each individual painted their own watercolor stoplights, played Beach Balls with their tables to Justin Timberlake’s song, “Can’t Stop the Feeling,” learned about Daniel Siegel’s hand model of the brain,

and had a 3-minute meditation of focusing on their breath while piano music played. The group was active and engaged. As a huge believer in getting feedback after presenting, I took it upon myself to ask a few of the youth what they learned, and was relieved and excited for them to share that they HAD learned and experienced something valuable. What a delight to share with the youth! 

I also led a breakout session with adults (ah, back to my comfort zone) in regards to What’s On Your Clothesline, Swirling Funnels and Perspective Glasses—all metaphors from various chapters of Stop Breathe Believe—as an opportunity to go deeper in the concept of re-wiring our thoughts, being aware of our feelings, and how we relate to our experiences with compassion.

The conference also included a talent show and a closing banquet—and then, much to Roger’s liking, a dance. What a joy to see survivors wear sleeveless attire and be open to being real and authentic about their scars, their stories, their courage. Roger and I were both challenged in our thinking so many times during the weekend. The resiliency, the wholeheartedness, the courage, and the perseverance of the survivors was remarkable. What an incredible experience to see the love of others shared so freely with one another. In the entry hall of our home is a framed chalkboard with the words, Love is a Verb.

At the Phoenix World Burn Congress, ‘Love is a Verb.’

The Phoenix World Burn Congress was founded by Alan Breslau, who was extensively burned in the crash of a commercial airliner in 1963. Following a visit to a young boy in a burn center, Alan realized the importance of peer support for those with burn injuries, and was inspired to establish one of the first burn support organizations in the United States. After many years of working with burn survivors, Alan officially incorporated the Phoenix Society for Burn Survivors in 1977. Here is a pic of us with Alan and his lovely wife, Delwyn.

If you know of a firefighter, burn survivor, someone who works in a burn unit, or a caregiver, please consider sponsoring them to participate in the Phoenix World Burn Congress next year. You can contact for more information. What can you do? Donate airline miles? Give a monetary donation? Sponsor someone from your community? Share this blog post so that others can hear about World Burn Congress?  Go for it—you’ve got what it takes to make a difference! 

And guess what? Next year the Phoenix World Burn Congress will be in Dallas, TX (Oct 4-7, 2017). I am sure that Dallas and all of Texas will roll out the barbeque eating, boot scootin’, Texas warm and friendly embrace and welcome to the burn survivor community. Roger and I will be there! 

In working on a short slideshow of my photos from the week, I serendipitously discovered the song, "For Good," from the musical Wicked.  The lyric that spoke to me was, "It well may be - That we will never meet again - In this lifetime - So let me say before we part - So much of me - Is made of what I learned from you - You'll be with me - Like a handprint on my heart."

I loved those words, and the "handprint on my heart" epitomized the experience.  Each of the survivors exemplify such courage, such vulnerability, such strength, such beauty, such authenticity, such resilience - all things that I so respect and admire in others.

Please enjoy watching the slideshow of meaningful moments from the 2016 World Burn Congress.