Wesley Sanders, FACES Outreach Coordinator
Strangers commonly asked me, “What happened to your face?” You would think I’d be an expert on answering that question by now. I have reached adulthood, and I still struggle to answer honestly. Each time, I’m in disarray, which might come as an overwhelming shock to people who know me first-hand. It should not, however, have come as a surprise given the many times I choose to protect my “narrative” of myself. Each time I’m asked, “What happened to your face?” I feel overwhelmed into submission. “Oh… I just have had a lot of surgeries.” I’m confident my answer is no better than how I answered at five years old. This answer is not comprehensive and usually doesn’t satisfy the person asking.
I was born with Pfeiffer syndrome, requiring surgical intervention for my survival. My first surgery was a tracheostomy when I was barely a month old. That same year, I had a few other surgeries to help my brain grow and for the cerebrospinal fluid to have a place to drain.
As a young child, my mom put me in the church preschool, invited my school friends over for sleepovers, and signed me up for art lessons, swim lessons, and dance classes. I was allowed to tether my tube to our family boat as early as I can remember. (Tubing is when riders are towed through the water, usually by boat.) She gave me ample opportunity to grow socially and gain an identity outside of what I looked like. She did her best to have my sister and me shy away from the punitive and dehumanizing ways people can treat people who look “different.”
Nevertheless, in many ways, I was still treated differently than my peers. In middle school, I was always paired with the girl who chewed her hair and picked her nose. She was “different” in a behavioral sense, and technically, I was born “differently” too; therefore, the teacher always deemed that we must be paired together for group work. I remember constantly feeling ostracized, and I hated it.
I remember a time when I left early from school every Thursday in Kindergarten. There was a boy in the class who constantly harassed me for my appearance, and my anxiety was always at an all-time high by the time Thursday hit.
But growing up, my nuclear family was always incredibly supportive, and in many ways, I knew how to have my personality enter a room before my appearance did. But that’s not to say it didn’t take work, and to this day, sometimes, I’m outcasted immediately for what I look like, and my efforts to prove “I’m normal” fail. There have been times that I have been discriminated against in job interviews and been on the receiving end of social exile. Sometimes, outsiders deem me subdued and unintelligent, and people will invoke pity and dependence on me.
Having a facial difference makes it difficult to fit in anywhere, and it takes a great deal of work to belong. I’ll always be grateful for how I was brought up. But I’ll always wish my circumstances were different, too. And each time I’m asked, “What happened to your face?” I’m sure I’ll continue to paint a smile on my face and, for a moment, wrestle with how to answer.
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