What Are You Staring At?: Living with Facial Differences

"What do you do when people stare at you?" The question came from a young man in the audience. He was addressing a panel of adults living with Moebius Syndrome, a very rare neurological condition that causes facial paralysis along with a host of other physical complications. The young man was not asking out of curiosity; he, too, felt the stares of someone with an obvious physical difference.

It was a question often addressed at the biannual Moebius Syndrome Conference, held recently just outside Denver.

If you've never heard of Moebius, you're not alone. The name is foreign even to many health care professionals. There are about 800 known cases in the United States, and a sizable percentage of affected people were in Colorado for the conference.

One of those cases is my 5-year-old son, Willem. Like many other families, we went to the conference to learn and to share our successes. With so few cases, parents and caregivers are often the experts on treating Moebius. Topics range from techniques for feeding a baby who can't suck, to eye drop solutions for a kid who can't blink, to the best sunglasses and hats for a kid who can't squint.

But when it comes to growing up with Moebius, the best advice often comes from those who have lived through it. What is it like, to use keynote speaker Terri Tate's phrase, having "a face of distinction?" The consensus from that panel of adults: People will stare, so use it to your advantage. They suggested waving or saying hello to break the silence.

As for the teasing and taunting, panelist Leslie Dhaseleer shared what her parents told her when she would get bullied for looking different. "(My parents) said those kids were the ones with the problem, not me. And I should feel sorry for them for not knowing any better. And I believed it."

I know soon my son will come home and ask me what he should do about the looks he gets. Thanks to the wisdom of people who've been there, I have the beginning of that script.