Living In a World of Uncertainty - Part 1
Normal on the outside but a different story on the inside
As many of you know, I was born with a progressive eye disease, Starghardt’s or Juvenille Macular Degeneration. This condition is very rare and vision loss occurs at varying points in the lives of those affected. For me, I began losing my vision around second grade and have had what seems like on/off cycles of vision loss ever since. The condition results from the absence of a key enzyme that clears a toxic byproduct of sunlight from the eye. Because this toxin accumulates on the macula, the cells die and scar tissue forms and those areas become non-functioning. The macula is responsible for central vision which is also our clearer/precise vision . Peripheral vision is spared, which allows for retaining a wide visual field. As the condition progresses, cell damage reaches the outer border of the macula and therefore decreases the breadth of the visual field. The gene responsible for this condition and its mode of transport are now known but as anyone that has it will tell you, the path of destruction is mysterious and the explanation of its destruction is nearly impossible.
An eye with Macular Degeneration: Notice the black spot in the healthy eye is missing in the MD eye. Scar tissue has overtaken the macula.
Living with Macular Degeneration is being trapped between rocks and knowing that there is a way out but no matter how hard you think, you are unable to find an escape. You are constantly in this world of uncertainty. Nothing is black and concrete, nor is it white and clear. People are always curious to know what I see. From the way I present myself and the level of independence I have they are very uncertain. My response to them is typically that I see blobs but to be fully honest, the world I live in is completely uncertain to me. I very rarely am confident in what I am looking at and my world is a constant guessing game of past experiences, relating contextual situations and trial and error.
This blog is meant to give you the most accurate perspective of the mysterious world i live in. People often ask me when I started losing my vision and I say about 2nd grade because this was the first time that teachers noticed that I was not seeing things I should have like books and the chalkboard. In reality , my visual loss probably began much earlier. I am asked whether I remember what it was like to have full vision and my answer is, “not really.” I remember excelling in sports like baseball and soccer that require a greater amount of vision but every single day seems to blend together. The only certainty that I have lost more vision, comes from those around me and myself knowing that I once was able to see something that now I struggle to see. Every morning I wake up not knowing whether I see less than the day before. The slow death of the macula is constantly changing its rate of destruction which contributes to the uncertainty of how much or how little I see.
Complicating the understanding of this condition even more is that our world is not static. Everything around us is constantly moving and therefore every second objects are being moved from my the periphery, through my central vision and back to the periphery. My peripheral vision detects the motion and maybe the color of the object but then it is lost into the haze before reappearing as motion once again. During the split second from when the object appears as motion until it reappears from the central blind spot, my brain must make a hypothesis (educated guess) on the world in front of me. Everything is a hypothesis and therefore can be wrong. This means I either look like I know what I am doing or I make a complete fool out of myself to those that have no idea I am visually impaired.
Everyday is another day of uncertainty when you have Macular Degeneration.
As you can imagine from reading the above explanation of the uncertain world I live in, one could easily go through life in fear or lack confidence in themselves after guessing wrong multiple times. Initially, I was one of these people that worried I may make a fool out of myself or miss something in my path. My confidence can still be shaken but I have learned that taking risks based upon my uncertainty and not really caring what others think of me is the only way to come out on top in the difficult and unclear world I live in.
This is just the beginning of a series of blogs looking “Through My Eyes” to understand better the world that myself and others with Macular Degeneration live in. The second blog in this series will go through real life situations and describe the thought processes that I use to make hypotheses about the world around me. This series is sure to reveal to many that, what you thought I saw was really just a guess based upon context and past experiences.