Hi.
My name is Ariel. I write about growing up with a facial disfigurement, as a result of Crouzon syndrome. I'm also interested in issues related to beauty, equality, human connection, and trauma. Thank you so much for reading!
My name is Ariel. I write about growing up with a facial disfigurement, as a result of Crouzon syndrome. I'm also interested in issues related to beauty, equality, human connection, and trauma. Thank you so much for reading!
Last year, I was at a Christmas tree lighting in my home town when my phone rang.
I didn’t know the man on the phone — not really, anyway. We met on Tinder months before and went on one date.
I have never seen someone who looked like me on a mainstream television show. I have never seen someone who looked like me, playing anything but a villain in movies, or in an ad or on a billboard. I am invisible.
When I was seven, I tied myself to the large desk chair that sat behind the mahogany desk in the corner of the hotel room, in which I lived. I bound my legs to the legs of the chair and an arm to the arm.
The first time a boy asked me out, it was a prank — a joke. A joke I found humiliating and heartbreaking. I was 13.
After years of pouring everything they had into rebuilding our beloved house (then doing it all over again), my parents had nothing left. But by that time I’d realized home is more than four walls.
It took me years to realize that despite being born with a rare facial disfigurement, beauty is more than a cold calculation.
Living with a facial disfigurement can be challenging — the stares that last just a few seconds too long, the double takes, the rude comments. For a person struggling to accept their physical appearance, it can be hard not to let these things affect quality of life.
I have Crouzon Syndrome. Crouzon, like “crouton” with a “Z.” (That’s what I tell people that have never heard of it.) Crouzon Syndrome is a disease where the bones in the head fuse prematurely. I repeat this line often.
When you first meet them, Sam and Zack DuPont appear to be polar opposites, but onstage, the duo has a bond that older brother Zack calls unmistakable. Five-and-a-half years apart in age, the DuPont Brothers officially teamed up a little more than a year ago.
The brothers, ages 23 and 28 respectively, are quickly becoming known for, as Zack puts it, their “lighthearted banter and heavy-hearted songs.”
