“Oh, yes, hi, I think we met before,” he said. The attractive Icelandic man was so tall he had to bend down a little just to shake my hand. Self-consciously, I thought I saw his eyes dart to my mouth and away. He was trying not to stare at the giant blister that had spread in glistening, pus-filled mounds across my face, leaving crusty yellow scabs behind as it traveled from the center of my bottom lip to my left cheek.
I remembered meeting him at a different music festival two years earlier; I had a blister then, too, and I wondered if the blister was how he had recognized me. It occurred to me that many of the Icelanders I have met more than once have never since me with a healthy face. There might be quite a few people in this country who don’t know that fever blisters (or cold sores) are a common side effect of air travel, jet lag, and stress, and who think of me as “that poor American girl with the deformed face.”
And then I wondered, Is this how my daughter feels all the time?
When I have a fever blister, it colors my whole existence. Not only are they painful, but blisters are incredibly ugly. I have had them my whole life, but because they can be transmitted sexually, I feel like they tell a sordid story to anyone who looks at my face. I feel ashamed for presenting something so disturbing, for putting people in the awkward position of having to pretend not to notice. I catch myself putting off errands and avoiding strangers for a week or so until the blister starts to heal.
But my daughter was born with a severe congenital facial anomaly. Her cleft lip and palate is not disgusting like a blister, but after six surgeries, she has visible scars that change the way her lips move, and her nose is still noticeably wider and flatter than normal, even for an Asian. Her appearance will not improve next week. She might choose to undergo additional painful surgeries to further shape her nose and minimize her scars, but there will always be something ‘different’ about her face.
If I am this mortified to present my blameless face of temporary illness to the world, what must it be like to exist without having ever experienced an introduction that didn’t include a moment of hesitation and darting eyes? How does a girl grow up strong and confident when the adolescent sense that everyone is staring at you is reinforced by lots of people staring at you?
Of course, as a parent, I try to make sure she understands what makes her face look the way it does. I have never used the words birth defect or deformity in speaking with her; I have emphasized that her problem is related to ease of speech and eating, while the appearance of her nose and the way it changes with surgery are byproducts – because the important thing is that she be healthy with full mouth function. I remind her – as well as children who are too naive and grown ups who are too rude to know that it is impolite to ask – that because noses come in a variety of shapes, “normal” is only what you’re used to. Remember Leo the Lop? There is nothing “wrong” with the shape of her nose, or anyone else’s.
That answer might satisfy the curious, but I know it isn’t enough for a little girl who keeps being asked the question. So I try to help her build confidence in other areas. Not just in the consolation prize, pretty-isn’t-what-matters way. I try to give her body confidence. I remind her that she is a natural athlete with the kind of body that other girls develop eating disorders to achieve. I compliment her thick, glossy, raven-black hair, high cheekbones and almond-shaped, beetle-black eyes. I show her that everyone has attributes they enjoy and attributes they dislike about their own body. “Yes, Mama’s nose is tall and thin but…” and I pull up my shirt and jiggle my belly fat. Or point out the bald spot on the top of my head. I remind her that in some parts of the world people try to achieve physical qualities that people in other parts of the world try to avoid. And I try to keep it all in perspective, always ending the conversation with a segue to health or intelligence or talent or anything that involves achievement over appearance.
But as I walk around a strange city feeling embarrassed in every encounter, I know that she faces a constant, uphill battle. Reykjavik is famous for its Beautiful People, but they have good manners. No one is actually treating me differently for the oozing wounds on my face. It’s just a natural human response to pause, flinch, or stare when presented the unfamiliar or disturbing. When I get back home, I will continue to educate the naive and rude, but there is still nothing I can do about the pauses and darting eyes that betray a fight against the urge to stare.
But I can work on myself. I can remember this feeling and fight my own urge to stare by looking more closely. Instead of struggling to ignore what is “wrong” with someone, I can work harder to internalize the knowledge that “variation” is more accurate than “imperfection.” The Beautiful People are only one type among many, many types of Wonderful People.
With every new encounter it’s important to remember: you have to look at the whole person – at the blister and the nose and the actions – without judgement or fear to find out which kind of person you are meeting right now.
Yeah, I know, it’s easier said than done. That’s why we live a long time. Anything worthwhile takes practice.