Photo by Golly GForce, Creative Commons license.

Photo by Golly GForce, Creative Commons license.

By Louise Nayer

I’m 66 years old. I gaze at my face in the bathroom mirror, applying special cream over the scaly patches on my neck and chin — years of chronic eczema. Lately, the red patches emerge only on my face, something sprouting from deep inside that I can’t control. Some days I have to take a deep breath, weaving my fingers together, trying hard not to scratch.

When I go outside, people rarely notice my scaly patches and never stare. My mother, however, was stared at every day of her life after the fire.

When I was four years old, sleeping upstairs with my sister and babysitter in a rented Cape Cod cottage, my parents drove home late at night to find there was no hot water. A new propane gas had been delivered that evening and they figured the pilot light was out on the hot water heater. They climbed down a rickety ladder to the cellar, “the pit” as my mother would later call it. Gas with no smell had been escaping for hours. My father held the red flashlight and my mother lit the match.

Boom! The cellar exploded in a flash fire, severely burning both my parents, especially my mother’s face and hands. They miraculously climbed up the shaky ladder, rolled out the flames on the lawn, screamed and a neighbor took them to the hospital. My sister and I, four and six, sleeping upstairs, never even heard their screams. We were mercifully not burned, but separated from our critically ill parents for nine months. My mother had 37 operations mostly on her face and hands and was facially disfigured for the rest of her life.

As a child, at Playground Number Two in Peter Cooper Village in New York City, I ran around in circles, yelling, “burned bad, burned, bad.” I wanted everyone to know what had happened. That way I wouldn’t have to explain to my friends who came to visit that my mother’s face had deep rivulets and ropey scars.

I warded off stares in crowded buses. “Don’t stare at my mother!” I wanted to yell but kept quiet and edged closer to her. Everyone gawked at her face — then would quickly turn away or whisper. I couldn’t talk with my mother about how I felt. She wanted everything to be “normal.” Often, I cried over small things. “Don’t be such a crybaby,” my mother said. I felt guilty that I cried so much — that I was weak. She was the one with the deformed hands and disfigured face. My crying was a reminder of all that was unsaid. It was the 1950s, the era of “Don’t air your dirty laundry.” Many years later, I realized that if she had started to cry, her tears would have gone on forever.

I was also a child of privilege with more than enough money. My father was a doctor (with socialist leanings as he helped start one of the fist HMO’s in the country). My mother was a nurse/editor who worked hard at making nursing a true profession. When the “burn money” came through from the lawsuit, my sister and I were sent to private schools and summer camps and to ballet and piano lessons. We went to Europe on the Queen Elizabeth (a dream of my mom’s).

What right did I have to complain?

When my mother came back from the hospital with her “final face”— her face looked like globs of silly putty with no chin and no real lips. It was not the face that the surgeons had promised. But there would be no more operations. Her surgeon, who had also worked on the Hiroshima Maidens brought to America for burn reconstruction, said of my mother, “I’ve never seen someone with such severe facial burns who survived.”

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When I was 15 my mother asked me how I liked her new shoes. “They look like old lady shoes,” I said, an unusual moment of unkindness as I tried so hard, too hard at times, to be nice. A few minutes later, my father raced into my room carrying a photo of my mother before the fire. “This is what she looked like before she was burned,” he said, as if I had no right to ever say anything that might hurt her feelings.

At work where my mother flourished as an editor of The American Journal of Nursing, meetings were videotaped. My mother made it clear she never wanted to be in a video. However, one time, unbeknownst to her, her colleagues forgot her wish. The video was played and she saw her face, as it really looked, and she was terribly upset.

Suddenly, photos of her before the fire appeared on surfaces in our house: her wedding photo on the coffee table, a photo of her at 21 on the bookcase. Once, when visiting my grandmother in up-state New York, she handed me a brown paper bag with a touched-up photo of my mom at 16. “She is my only daughter,” my grandma said.

When I turned 21, I began to have panic attacks. What had been so neatly wrapped inside my body had now started to unravel. I grew frightened of elevators and later of driving across bridges. I had nightmares of fire: my mother’s face was a melon that exploded. I could see walls of fire next to my bed. As much as I tried by myself to push the feelings aside, I knew I needed help. I began a long journey out of that incendiary cellar where my parents had been so terribly burned. I started therapy. I saw a hypnotist. I took lots of soothing baths. I exercised. I was lucky to get tremendous help and support. I found love. I created a family of my own.

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Did my mother every truly accept her changed appearance? Probably not. But my children never knew her to look any different. She dressed well, even sewing her own clothes with her deformed fingers. She lived in communities or places where people knew her. It was only when she was among strangers that people stared. She handled those stares with tremendous courage and grace. She focused on all that was going well in her life. “You can’t change the past,” she once said to me.

Though there might be the first “shock” at seeing her, once she began to speak and to connect with others, as she loved to do, her face was no longer an issue. David Roche, facially disfigured from birth, calls this “the second stare.” When looking again, you see the person and not the disfigurement. Charlene Pell, severely burned in an explosion, started the organization Facing Forward, which sends people into middle schools to talk about facial difference. She says that it is normal (and scientifically proven) that if someone sees a face that is slightly “off” the norm, it is natural to stare. It is how people react and how they educate others that is crucial to creating a connection between those who are “different” and those who stare.

My mother died at 91 years of age. Some people at stores might remember “the woman with the disfigured face.” But most people will remember her as an attractive, intelligent and insightful woman who got through “the accident” in her own way, drawing on her stoicism and “onward we go” mentality. My children will admire “Grandma Nayer” forever.

My sister and I, so young when the trauma happened, have plumbed the depths to release our deep feelings of loss during that difficult time. However, we are perhaps more compassionate people and more accepting of “difference” than others and hope the world will continue to evolve to embrace all people, no matter what they look like, as fellow humans.

Louise is the author of four books, most recently Burned: A Memoir, an Oprah Great Read. She is a member of the San Francisco Writer’s Grotto.

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