A Whole New (Burn) World


I spent three days at my own personal Disney Land last week. In truth, I stayed just two miles away from the actual Disney Land, but I never went there. Instead, I entered a different magical land, a place where no one stared at my scars, and I fit in not despite my burns, but because of them. I didn’t have to work to make friends. I didn’t have to compensate for the unexpected sight of my scars. I attended the World Burn Congress.


The Phoenix World Burn Congress is an event for burn survivors, family members, burn care professionals and firefighters; everyone touched by burns (learn more here: https://www.phoenix-society.org/). When I landed at the airport, six firefighters grinned and proudly escorted me to their own free hotel shuttle service. The hotel was mobbed with burned people. Some of us had no visible scars. Some of us had a scar or two on our necks or faces, enough to silently signal our shared history of trauma and survival. Some of us had faces completely engulfed in thick scars, eyes or ears missing. Several times during the week, I extended my hand to greet someone. In return, the person raised their forearm, and I grasped the rounded end of their arm where their hand used to be. I held the smooth end of their arm gently in both my hands, and we shook our limbs together, smiling.


When you are a burn survivor, you know that the sight of yourself can be upsetting to others. At the very least, the sight of yourself is a surprise. No one expects a face with a thickened, flattened nose. No one expects you to have thick finger stumps. No one expects a misshapen mouth. Most burn survivors learn to manage these moments. We smile and act extra friendly. Perhaps we crack a joke or two. Sometimes we pretend that we don’t care. Sometimes we cover ourselves with hats, hoods, and extra makeup. There are lots of ways to cope.


The point is, there is always a social moment for us to manage. There is an inevitable moment when you meet someone new, that you manage the impact your appearance has on another person. If you have hidden burns, you don’t have to handle that moment right away. However, you still know that there is something different about you that the new acquaintance doesn’t know yet. What will they think about you when they do know it? The moment lingers out there, waiting to happen.


There may be readers who are thinking, “But you don’t look that bad. Sometimes you don’t even notice your scars.” This is true. Still, I have been laboring for 52 years, on and off, enduring surgery after surgery, to arrive at a triumphant place where you might not notice I am burned… right away. You will still see my scars, but maybe not first thing. And still, depending on where you glance or what I’m wearing, I remain plenty scarred.


People who know me might be surprised to read these words. I am not preoccupied with my burns. I wear shorts and tank tops in the summer, even if it exposes more scars. I go out without make up. I am friendly, I’m open. Just the same, I remain aware that my face, neck, arms, chest and legs are going to attract a longer look, and not the kind that feels flattering.


There is a look that humans give odd sights, even the most socially skilled of us, a look that says, “What’s that?” There is no point in fighting this impulse. It is human nature to be alert to difference, to attend to the unexpected. Our species survived partly because we are good at instantly perceiving what is out of the ordinary, to protect ourselves from possible harm. My thickened skin calls out, “There’s something different here!” It is human nature to notice and to pay attention. I don’t expect it to change.


In my own personal Disneyland this week, I had three blessed days free of this moment. I don’t know what the hotel did to get prepared for 1,000 burn survivors, but the staff was perfect. Not a single employee looked at me a moment too long. Everyone greeted me with a warm smile. I didn’t notice one look behind my back. (Yes, I notice those looks. I pretend like I don’t, but I do.) For three days, I was free of the burden of being a burned person in this world.


I could sink into sadness about the social burdens of being burned. When I think about it, though, don’t many of us carry similar burdens of difference? Obese people see their image reflected back with judgment in strangers’ eyes. Black people know, in a white world, that they may be instantly perceived as black before they are seen as being a person. Old people know we judge their wrinkles and loss of youth. There are many people who have a body that society judges inadequate with an instant blink of an eye. My scars might be unique, but my experience of social difference is not.


What does a crowd of burned people do when we get together? We hugged a lot. People stood up and told their stories. We danced. There was a talent show. The firefighters came every day, sometimes with bagpipes, lining the back of the conference room. They stood tall in their stiff blue uniforms, eyes straight ahead. If you looked closely at them, they often looked close to tears. Most of this hugging, dancing group with misshapen bodies wouldn’t be there but for the firefighters who had rescued them. The firefighters gazed on a community that wouldn’t exist without their bravery.


What inspired me the most was the spirit at World Burn. There was a joy at being together, a jubilation at surviving, a fierce collective force. We hummed, we sang, we cried. At one point, we all danced the Hokey Pokey, which I honestly don’t recommend at 9:00 in the morning, but we did it just the same. I wore a badge with a heart on it, to indicate I was a first-timer. This heart meant that strangers were supposed to spontaneously embrace me, and they did, lots of them. Stranger after stranger came up to me, hugged me, and said hello.


I can’t say that having burns doesn’t matter. Of course it matters. It’s really hard; it’s a terrible burden. But I think what matters the most is the spirit underneath the skin, the pulsing heart, full of generosity and care. Beyond thick scarred skin, beyond misshapen noses, beyond lost fingers, beyond even the traumatic years of excruciating recovery. Underneath all that, look at the heart. Show me the kindness still shining through.


If, someday, you find yourself looking a bit too long at a burned person, or someone who looks different, please smile and look into their eyes. Look away from the scars, or the missing limb, or the crooked features. Don’t get stuck in pity, scorn or curiosity, just connect with the person. Look into their eyes. If you do, I bet you will notice a bright light beaming back at you, a light born of difference and bravery, of danger and resilience. You have just met a hero.

#resilience #WorldBurnCongress #PhoenixSociety #Coping #Burns



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© 2020. Lise Deguire, Psy.D.  All rights reserved.

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