Recently a Facebook friend asked me how I learned to live with disfigurement. She is due to have extensive surgery and knows it will change her face forever. I had to pause and look back over the past 21 years. Now, I forget that my face is different and only remember if someone asks me what happened. It has become my face.
I was thirty-three years old when I lost my left eye, orbit and part of my face to cancer. The diagnosis was adenoid cystic carcinoma of the lacrimal gland. The prognosis was very poor. Losing my eye was my only chance to survive the cancer. The choice was my face or my life.
Accepting the changes in my face was a long-term project. Friends and total strangers would give me unsolicited, but heartfelt advice such as: a new development they saw on medical channel or read about in the paper that could fix me. This seemed to imply that I was broken. I struggled with the embarrassment of my face and kept it hidden behind patches and glasses.
I tried to fix the problem by hiring a company that specialized in special effects for movies to make me a prosthetic eye. I had to glue the eye on. Then I put on a lot of make up to hide the edges. As I would go through my day the make up and glue would start to melt and slip down my face. My active lifestyle did not go with the latex eye.
I went to counseling and started to take small risks. I would expose my face when I was participating in water sports to gauge the reaction of other people around me. They mostly ignored my face and continued to talk about the fun we were having. In some ways it was a little disappointing. I expected some kind of reaction. Maybe I wasn’t as broken as I thought I was.
The turning point was when I was counseling a 12-year-old boy who had been severely abused and was diagnosed with schizophrenia. In one of our sessions he said to me, “You tell me not to be ashamed of my scars, why are you ashamed of yours?” That day I took the patch off. I have walked with my head held high ever since.
My husband and I are hooked on Dancing with the Stars. We rooted for J.R. Martinez from week 1. He has done a wonderful service for those who have facial disfigurements or who are facing disfiguring surgery. He has shown us how to let the light from within shine and stand proud. Remember you are not just your face. You are so much more. Stand proud and allow your inner light to shine.