Written by Kai Levenson on October 31, 2019
For as long as I can remember, I have wished my scars would go away. It started with the itchy pressure garments that restricted my 2-year-old body, moved into questioning from my kindergarten peers, rose up to name calling from two boys who barely spoke English but knew enough to berate me for my surgery bruised chest. The understanding has always lived in the back of my head: I am different. Like everyone else growing up, I did not want to be different; I wanted to fit in. So I covered up what marked me as divergent and rarely showed my scars. I scarcely wore shirts that dipped below the collarbone, I took makeup classes to learn how best to hide them, and I used creams designed to fade my swirly scars into oblivion, which is exactly what my 12-year-old self-yearned for.
But now I am 16, I have been a burn survivor for nearly 15 years, and my scars are finally starting to fade. When I was younger, I would have celebrated, but now I don’t know what to feel. When I was growing up, getting rid of my scars had always been my goal, but now that it’s actually happening I wish my burn would stay the same. Being a burn survivor has its challenges, yes, but it has also introduced me to some of my closest friends and led to some of my favorite experiences. Through burn camps and Phoenix World Burn Congress, I have friends in thirty-one states and five countries -- something rare for a 16-year-old from a small city. This winter I’m going to New Zealand to visit one of my friends who was burned in the same way, on the same place on her body, and at nearly the same age as me. Our stories and scars are slightly different, of course -- and separated by the Pacific Ocean -- but fundamentally they are the same. It’s connections like this, which cross geographical and international borders, that I love the most and that I am most afraid of losing.
When I was younger, I felt utterly alone as a burn survivor, but at Phoenix World Burn Congress and burn camp I have always felt at home. Because I was burned at such a young age, I do not remember it; and with my scars fading, it feels like my ties to the community are starting to strain. I never had the memories of the ambulance ride to the county hospital or my overnight hospital stay, but I have always had my scars. They have been a constant in my life, and now that they are fading I feel conflicted: this is what I always dreamed of, but now that it’s coming true it seems like my worst nightmare. It feels like just as I finally learned to love my scars, they are starting to fade, and I am terrified that my friendships within the community will wane away with them.
Part of it is being 16. I am looking at colleges and laying the groundwork for the rest of my life, a complicated map in which I’m not sure where the burn community will fit. I have practically grown up at burn camp and have formed close relationships with many of my friends there, but it seems like life is taking us all different directions. I love the sense of community in spaces for burn survivors, and I love my friends, and with potentially moving cross-country for college I’m scared that those relationships and connections to the community will be severed. The potential of losing my friends and my scars at the same time is absolutely terrifying, especially at an age where it feels like everything is changing. I’ve never known where exactly life would take me, but I always assumed that I would have both my scars and my friends. 16 is a turbulent time and the threat of losing both looms closer.
I do not think I will ever stop being afraid of losing my friendships with other burn survivors. Our connections are unique to the burn community, and our experiences as burn survivors connect us in a way, unlike any other friendships I’ve had before. Bonds forged through burns are powerful, and I know that wherever I end up, I’ll find a community, even if it takes some searching.
Even though my scars are fading, it will never truly disappear. I can never go back to that fateful day in November of 2003 and prevent a cup of hot tea from falling on my 15-month old self, and I can never change what followed: surgeries, stares, and shame. I cannot change how my burn impacted the first 14 years of my life, but I can change how it affects the rest.
Even as the marks fade, I will still be a burn survivor. I made it through the pain to come out unbeaten and proud of my scars, and when my scars fade I will always be proud. I have been shaped by burn camp, blazed my own path in the world as a young person who was burned and that can never be taken away from me. I will always treasure the friends I have made at camp and the places my burn has brought me. It does not matter that my body might not show my story for much longer, because my scars can fade, but I will forever remain.