I am asked this question many times and it is difficult to answer. Often, I do not know what I see…for what I am looking at does not declare itself readily. The world through my eyes is a shadowy, ill-defined place with uncertain shapes and colors. I am losing the ability to detect light and color in increments as if the world around me is a watercolor scene fading into the canvas. At times, I see nothing, only darkness and danger; other times the world is brilliantly washed in diffuse light and a soft blurriness which is almost beautiful… like a Monet… Almost…
Currently, I see life through a very small aperture. This creates lots of challenges as anyone with RP can attest. I cannot see above, below or to the sides of my field of view. It is as if I am looking through a keyhole or straw. And the view is very blurry in addition. My level of vision varies depending on lighting, glare, time of day and fatigue to name just a few factors. I recall once that I was riding in a car with a friend and she wore a black dress. I casually reached over and picked a white string off the fabric. In the next moment, she said “Oh look at that beautiful old house,” directing my attention out the window. I turned and saw nothing but a hazy white-out. “I cannot see it,” I replied. Perplexed, she asked me “How is it you can see the white thread on my lap but you cannot see a big old house?” “I don’t know,” I replied, “it is confusing to me too.” I can see some things some of the time. Many times, I run into doors, tables, windows, trees and other things in my path. I have walked off curbs and fallen down stairs due to a lack of peripheral vision and depth perception. I have sustained a variety of wounds and injuries, including broken ankles requiring surgery. bloody knees and shins, cuts and bruises to my face, and a dislocated shoulder.
The thing is I cannot rely on my vision. It is faulty in the way it presents a scene to my brain. It cannot handle darkness…or too much light. I can only see bits and pieces at a time and my brain has to put the puzzle together. So my world has become constricted, unsafe, unknowable and inaccurate through my eyes. It is a confusing place to be…almost blind but not quite. And I realize it is confusing for others to understand this landscape in which I move and live.
But there are other ways to know the world in which one lives. And a little bit of vision does make a difference sometimes. Color, contrast, and light can help orient and clarify objects. In the same way, smell, taste, sound and texture can tell us about our environment. We only need to learn how to use these senses to gather information and clues that will keep us connected to the world. And what a kaleidoscope of sensory experiences awaits us if only we will gather our courage to learn, explore, and do things in a new way.
Yes, the world is an uncertain and confusing maze for someone with RP. As I was getting older, the falls were getting uglier and scarier. I began moving slowly and shuffling my feet with my eyes on the ground all the time, concentrating so hard on trying not to trip, fall or run into an obstacle. I became afraid to go out. Learning to use a cane and a guide dog gave me back a sense of confidence, freedom, and safety which I had gradually lost. Now I can walk with my head up and enjoy the surrounding environment. The world does not seem as dangerous now and I have learned to accept what I see as my reality without questioning it all the time. I am on-the-go once again!