Posted tagged ‘Treacher Collins syndrome’

Temporary Disfigurement

February 5, 2018

WORDS FROM W.W.                                                                 February 5, 2018

                              

My wife and I went to see the movie Wonder a few weeks ago. We found ourselves shedding a few tears during the film, which followed the story of a fifth grade boy named “Auggie” who had Treacher Collins syndrome. Because of his condition Auggie would wear an astronaut’s helmet around whenever he was in public. He dreamed of being an astronaut because in space no one sees the faces of others.

Ten and eleven year old kids can be cruel, but they can also be compassionate. Auggie experiences both ends of the pendulum as it swung from classmate to classmate.

I was deeply moved by watching the film and pondering its messages. Weeks later I’m still thinking about it!

And then Saturday morning I woke up with a rash on the side of my face that made me want to put on an astronaut’s helmet…or paper bag. By Saturday afternoon I looked like I had a huge chaw of chewing tobacco between my left cheek and gum (Not that I’ve ever done that, but I was born in Kentucky! Half the barns in the state used to have “Chew Mail Pouch” painted on one side!).

The past two days I’ve had a few “Auggie moments”. That is, I’m very self-conscious of my face and I assume that everyone I see is looking at me. There’s a sense of embarrassment tied into it. I don’t feel normal, and normal is what all of us want to be unless we’re doing something that our culture thinks is extraordinary.

Lessons are learned in the abnormal moments of life.

This afternoon middle school boy’s basketball tryouts begin. It’s my seventeenth season coaching at Timberview Middle School, and it’s the seventeenth time I will see the uncertainty of seventh and eighth grade boys as they deal with the uncomfortableness of being watched by coaches and other boys who they feel inferior to. Perhaps God gave me this rash to help me empathize with the pressures of being a twelve year old.

Actually, there’s that hint of uncertainty and inadequacy in any middle school child. With some it just might be a little deeper below the surface, but it’s there. Much of the time he or she simply stays out of situations where it has the potential to rise to the surface.

I can relate. In my few trips out in public the last three days I’ve tried to stay to the left so the left side of my face is away from people. Three months from today I’ll turn 64 and I’m still sensitive to my insufficiencies!

I’m simply a self-conscious adolescent in an elderly shell!