Losing Well Part 9

Continuation of my series, Losing Well. Part 1 can be found here. 


January 2001

    Ever since I found out about RP, a question has been repeating itself in my head: how did I not notice my legal blindness? How did doctors trained to look at the eye not notice? My doctors looked for expected results while my own brain filled in my blind spots. When I walked or drove, I scanned my surroundings. This allowed me a virtual sense of normal mobility. But my brain was lying to me. I spoon fed the truth. By myself. 
    My doctors were amazed that no one had diagnosed my RP before became an adult. Everyone knew I had vision problems. I just did my best. My brain adapted. I avoided driving at night. I constantly scanned my environment for obstacles. Over time my coping methods started to fail as my visual filed declined.   
    Vision is a lot more then just acuity. Normally sighted people have 300 degrees of vision in each eye. My field of vision is about 5% of that and has been shirking my entire life. At this point, I’m seeing through a tiny pinhole of vision. What makes this confusing is that my eyes correct to about 20/40. I can read and I can even see faces (but I can only see your nose or mouth, not both at once).
    Emotionally, I was a wreck after finding out. How do you deal with the fear and the pain and frustration and not lose your mind? You either decide that you will continue to live or you won't. Most people choose to live. I decided that there were a lot of things in this world I wanted to see and experience and I needed to do it now.
    Strangely, while I was very upset, I was also exuberant about finding out I was going blind. I know that sounds crazy but I understood now. So that’s why I was so awkward! It explained so much that I had struggled with growing up. I felt complete in the midst of my outward inability. My whole life experience looked differently with the knowledge of RP.
    My perception of myself and of life were changing. I started to realize that all of my life I’d valued myself based upon what others were thinking. I didn’t trust myself. I had strong ideas of what I wanted to do and be but I still perceived myself as incapable in the eyes of others.
    At first, I only saw negative. The stress was warping my ability to feel or do anything. So I looked within myself for some sign that I could handle this. My future was looming, massive and unstoppable and I wasn’t sure how I was going to have the strength to get up in the morning. Then I realized something about myself. I’m a fighter.

Part 10 can be found here.