stargardt

Remembering Normal

U C me. I C U. Hmm. Sort of. Well, not really.

Vera toasting a beautiful day

As my central vision has degenerated over the past six years, I have been adapting to accommodate my limitations. For example, watching television, shaving, reading email and clipping my fingernails. These all require workarounds.

When having a conversation at a normal distance, I don’t see the other persons face. There is just a gray blur above their neck. To see their facial features, I look to the right and down, just above their shoulder.  That is my peripheral strong spot. Even though I don’t see their expression, by looking towards their face, I assume that they are unaware of my deception. For them, everything is “Normal.” This is just one technique I have developed to limit being “different”.

Or so I thought until last night when I had a conversation with my wife at the dinner table. She said she misses eye contact with me. I was stunned. It may not be as obvious to others, but with her, my work-around is a FAIL! 

Merde! Social interaction and non-verbal communication by eye contact is becoming just a memory. More critically, it is essential to intimacy. I am being deprived but didn’t realize it because this has happened so gradually. Writing about it here, I realize how much I miss it. 👁️


My Big VIP Adventure

Listen (sticky post)

M ore than 20 years ago, I was diagnosed with late onset Stargardt Disease. It is a progressive form of macular degeneration where the build up of Vitamin A kills retina cells leading to central vision loss. I cannot read a menu or a book. By comparison my peripheral vision is absolutely amazing.

amsler grid - me
How I see the Amsler Grid

This blog is my journal of how I am adjusting as a VIP (visually impaired person). Adapting to Vision Loss is a bit like going through the stages of grief. Consequently, I have quietly experienced periods of denial, anger, bargaining, depression and acceptance. as well as sporadic moments of profound philosophical insights into , cribbage, shoveling snow and the human comedy.

A timeline of that path would include: Eight years ago I stopped playing basketball. Six years ago I stopped driving Five years ago ended my commercial graphic design business as my skillsets slowed,. Two years ago I stopped reading print, transitioning to software that converts text-to-speech. Last year, thanks to ZOOM, I hired an assistant to screen share and aid me with intricate computer tasks. Technology Rocks. I ❤️ Voice Over.

As an artist, the impact has been disturbing. but I am determined to not let that defeat me. I am resolved to persist and record this journey. –KBS June 5, 2021