They didn’t go anywhere…. In fact, I see many of them everyday. There IS something different about them. There IS something different about me. The difference is that I’m legally blind and their faces do not exist in my world anymore. The onset of Lebers Hereditary Optic Neuropathy (LHON) is usually sudden. You don’t really get the chance to understand or even process what (or who) you will be missing due to vision loss.
Maybe it doesn’t look like it bothers me on the outside, because I can hide the stress, anxiety, and fear of it all pretty well. But, unless you become blind, unexpectedly, you will never know the pain and heartache of sudden vision loss.
I miss facial expressions so much. The “looks” of happiness, excitement, laughter, and sadness have disappeared. I miss eye contact and non-verbal communication. I miss visual connection and interaction. My “gift of sight” was stolen by LHON, leaving feelings of disconnection, isolation, and deep sadness left in its place. And trust me, those feelings can rear their ugly little heads when you least expect it.
I know I can look at grainy, blurry photos of the people in my life blown up as big as the sun on my computer or CCTV… but, guess what? it’s. NOT. the. same! Please don’t start with the “at least you can see something.” crapola! That doesn’t help in those moments of loss. Magnification is my hero and I really am grateful for it. The “assistive technology” devices will never replace the personal visual connection I no longer have with my family and friends…. Because,You can’t replace a face.
~ On September 24, 2013, I entered into the world of LHON. Two years ago today, I was finally diagnosed by a mitochondrial DNA test and LHON became a household word. Over the following month, I slowly became legally blind and my family and friend’s faces slowly vanished. I will continue to “see” people for their heart and soul, it is what it is, that’s all I know.