A Facebook friend recently asked me how I learned to live with disfigurement. He must undergo extensive surgery and knows that he will change his face forever. I had to pause and look back over the last 21 years. Now, I forget that my face is different and I only remember it if someone asks me what happened. She has become my face.
I was thirty-three years old when I lost my left eye, the socket, and part of my face to cancer. The diagnosis was adenoid cystic carcinoma of the lacrimal gland. The prognosis was very bad. Losing my eye was my only chance to survive 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 honest advice like: a new development they saw on the medical channel or read about in the paper that could cure me. This seemed to imply that it was broken. I wrestled with the shame on my face and kept it hidden behind eye patches and glasses.
I tried to solve the problem by hiring a company specialized in special effects for movies to make me a prosthetic eye. I had to close my eyes. Then I put on a lot of makeup to hide the edges. As the day went on, the makeup and glue began to melt and slide down my face. My active lifestyle didn’t go with the latex eye.
I went to counseling and started taking small risks. I exposed my face when participating in water sports to gauge the reaction of other people around me. They mostly ignored my face and continued talking about the fun we were having. In a way, it was a bit disappointing. I expected some kind of reaction. Maybe he wasn’t as broken as he thought he 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 she told me: “You tell me not to be ashamed of my scars, why are you ashamed of yours?” That day I took off the patch. I have walked with my head held high ever since.
My husband and I are hooked on Dancing with the Stars. We have supported JR Martinez since week 1. He has provided a wonderful service for those who have facial disfigurements or are facing disfigurement surgery. He has shown us how to let the light within shine and keep us proud. Remember that you are not just your face. You are so much more. Stand proud and let your inner light shine.