Written by Samuel Moore-Sobel on September 03, 2019
"I can't make all your scars go away," the doctor says as he inspects my face, his eyes were drawn to the large scar under my nose. It all feels like déjà vu. The nice, plush office. The polite receptionist sitting behind the desk. The clipboard of paperwork she expects me to fill out as accurately as possible. All leading up to the moment in which the doctor tells me about the future of my face.
"You are very lucky,” Dr. Barry Cohen tells me. “I am not minimizing the pain you went through, but just saying it could have been much worse."
He has kind eyes, making me feel comfortable during the initial exam – far from an easy feat. He bats away my apologies for posing additional queries. "That's what I am here for," he says. “I just want to make sure you are comfortable."
Surprisingly, I am. The shape of my nose does nothing to faze him and he remains confident throughout the appointment that his hands can produce the desired outcome: preserving a disappearing airflow.
Meeting Dr. Cohen was just one of the many gifts to come about as a result of attending Phoenix World Burn Congress 2017. At the farewell banquet, my mother and I met a woman who works in a hospital near our home. After we briefly described our story, she conjured up a name of a doctor who might be able to help.
My initial response was to immediately tamp down my own expectations. Years of doctor’s appointments and subsequent surgical procedures yielded rather unpleasant and equally scarring experiences. They reinforced the idea that nothing else could be done to prevent my right nostril from collapsing, unable to withstand the pressure exerted by a large, red scar. Thankfully, meeting this doctor far surpassed my expectations, a common theme of this beautifully unconventional gathering that caught my attention from the very first night.
"I am greater than what happened to me, and hope is greater than fear,” Tony Gonzalez, fellow burn survivor declared during the opening night of Phoenix WBC. His words caused my initial trepidation over attending the conference to evaporate, paving the way for a sense of excitement to completely engulf me in the days ahead.
My decision to travel to Dallas was made in conversation with a fellow burn survivor. After interviewing Amy Acton for a two-part series published in the Blue Ridge Leader, she sold me on the merits of attending Phoenix WBC. The promise of gathering with fellow burn survivors in an environment completely devoid of judgment proved appealing.
Her description proved apt indeed. A strong sense of love and compassion emanated from fellow burn survivors and their families, with so many willing to offer a helping hand to those farther behind them on the road toward recovery.
My own accident occurred more than eight years ago, a gut-wrenching and pivotal experience that in some ways I am still trying to make sense of despite the passage of time. My worry stemmed from the fear that being in a room full of survivors might trigger past emotions that I had worked hard to conquer. Would this experience prove to be a setback?
My fears could not have been more misplaced. The power of this conference lies in the ability to gather with nearly a thousand others, each possessing an understanding of what it is like to be burned. The words of others brought to life concepts and struggles that were underlying my very existence, with little understanding or appreciation for their origination in my own life.
As the conference unfolded, I soon realized that parts of myself remained unhealed. As the days flew by, I began to detect the ways in which a deep sense of loss continued to permeate my existence. It became clear that the experience in some ways still clouded my worldview, affecting my relationships with family and others in subtle but traceable ways.
My own easily hidden insecurities – making casual, unpredictable appearances especially in romantic relationships - were confirmed by so many other attendees. Many were plagued just as I with the concern over whether anyone would ever fall for us, scars and all. The enormous difficulty posed in navigating others’ perception of the scars we carry is a sentiment shared by many. We worry about leaving our homes and venturing out into the world, dreading the moment when a stranger will randomly inquire as to the origins of our scars.
“You can come here and no one stares,” a fellow participant told me. After years of uncomfortable interactions, it was a relief to go a few days without encountering one person who was shocked by my scars. No judgments passed, no assumptions made. Eight years after my life changed forever, I finally found a place of complete comfort - outside of family and a select few - in which I could truly be myself. I was no longer alone.
I returned from Dallas with a renewed vigor in working out the kinks in a recovery that has been filled with plenty of twists and turns.
The tools offered by therapists, doctors, and conference speakers gave me a sense of hope and equipped me with tangible methods to employ in daily life. The practical advice concerning open communication and overcoming trauma proved especially helpful in my own experience. I find myself continuing to implement lessons in my own life several months after this experience.
Hope is born out of the stories of others, tales filled with courageous acts in the face of great adversity. Sometimes the rawness of emotion snuck up on participants, who would begin weeping uncontrollably when confronted by the past. Yet there is strength in numbers. None of us are alone in our collective pain - or in our collective hope.
At WBC, the largest gathering of burn survivors in the world, nearly a thousand people came together to celebrate the life we have while mourning the one we lost. Yet Amy Acton, Phoenix Executive Director, reminded us of the urgency surrounding this movement.
Despite the large turnout, there are thousands of others left in the dark, not knowing about this opportunity to share and grow. In the U.S. alone, more than 40,000 people a year are hospitalized after suffering a burn injury.
Only a few years ago, I was one of those 39,000 left in the dark when it came to available resources. Learning about Phoenix Society after much time had elapsed – I went several years before meeting a fellow burn survivor, contributing to a deep feeling of loneliness as I traveled the road back from my own injuries. “If only we had known about this eight years ago,” my mother told me. “Our lives would have been so different.”
Perhaps. Although, in the words of T.S. Eliot, “It is never too late to be what you might have been.” After more than eight years - spurred in part by the courage displayed by nearly a thousand people at the Sheraton Hotel in Dallas - I was willingly photographed in front of a banner declaring that #burnsarebeautiful.
After more than eight years of wrestling with the implications of losing my face, I decided it was time to leave the remaining strands of anger and bitterness behind. For beauty can only be found in the eyes of the beholder.
My scars, both invisible and visible, are beautiful. Beauty stemming not only from the symbolism of survival but also from the choices I have made to thrive, to grow, to become greater than and to help others realize the effects of their own scars - both visible and invisible.
Join the movement to bring all scars to light, and share your story with those around you. “The future is greater than the past,” Amy declared. Grab hold of the future by allowing your scars to change the world. It starts with you.
Samuel Moore-Sobel is a business process consultant and freelance writer. He is nearing completion of a memoir focusing on his experiences revolving around both trauma and recovery. He writes a column for the Blue Ridge Leader and has written numerous guest blog posts concerning his experience as a burn survivor. Visit his website and blog, www.holdingontohopetoday.com.