I like the person that lives inside my face.
I was born with a rare craniofacial condition called Treacher Collins, which I inherited from my dad and my grandmother. The facial bones and tissues are underdeveloped, and in my case, I was born without ears, cheekbones, and a severe cleft palate. In addition to wearing a hearing aid and taking speech therapy, I’ve had thirty surgeries, some of which were reconstructive, and some for unrelated health problems.
There’s aspects of Treacher Collins that I struggle with, because although I’m proud to look different, having a craniofacial condition means that people ask a lot of blunt questions, often when I least expect it. “What’s wrong with your face?” strangers will ask. The honest answer is that sometimes the scar tissue from past surgeries cause pain when I least expect it, or my hearing aid gives me headaches some days. That’s not the answer they’re looking for. But I can confidently say I like the way my face looks. I like my eyes, big and downturned, bracketed with their dark shadows underneath. I like my new apple round and pink cheekbones. And I love my perennial smile. I like looking in the mirror or at pictures of myself and finding features that I see in the people I love.
Most importantly, I like the person that lives inside my face.
I’m only twenty three, and I’m pleased to say my life has been a nonstop adventure. I’ve been evacuated from a hospital hours after surgery because of Hurricane Sandy. I’ve made countless friends on pediatric wards, the Ronald McDonald House in Wisconsin, and most importantly, in my hometown, Albany, New York. This past year, I finished writing my first novel, graduated from University at Albany with a bachelor’s degree in psychology, and became a member of the Albany Tulip Court, where I serve as an ambassador to my city, and work with four other girls to promote literacy and volunteer in the community.
If I could give any children with craniofacial conditions advice, it would be this: Put yourself out there. You will come into your own the more you try new things, and you will find so many people that will love you and guide you, and eventually you’ll find yourself compelled to love and guide in turn. In some ways, people’s eyes will always follow you. Use it to pursue your dreams, and help others find theirs. Find others who have your condition and lean on them for support. I’ve relied on my dad and grandma for their resilience and experience with our shared condition and it is invaluable. Your condition can help you forge a powerful connection to the world, and to yourself.
With great affection,