What exactly do I see?

There are multiple parts to my visual impairment. One is the visual field. Visual field is the entire area you see when an eye is fixed straight at a point. If you hold both arms out to your side that is 180 degrees. Most people can see their hands if they are holding their arms almost straight out to each side while looking straight ahead. I have to bring my hands almost completely together in front of me before I see my hands. A person is considered legally blind if their visual field is less than twenty degrees. I have about a five-degree field of vision. It is like looking through a straw. I explain how much I see like a flashlight. The light beam goes out as it gets further away from the flashlight itself. When the flashlight is closer to an object, the light beam is smaller. As you move the flashlight further away from an object, the light beam shines in a larger area. That is how my vision is. The closer I am to what I am looking at the less I see. I need to be further away so I can see more. Usually If I am talking to someone at an average talking distance of a few feet, I can only see the area of one of their eyes or their mouth. If I am several yards away from a person, I can see their entire body.

The second factor to my vision loss is the rod and cone damage. Rods and cones are responsible for eyes seeing light, dark, and color. To me, this is the worst part of my vision loss. If lighting is not just right, everything is just completely dark to me, not just dimly lit. It is disheartening to go into a restaurant I have been to many times before seeing perfectly fine, and now it is so dark I find it difficult to see my plate. I always ask for a window seat or a table directly under a light. Even if I had a normal visual field, if the lighting isn’t just right for me, I can not see anything. Even at home in my den it is dark now. I am unable to see a friend or family member sitting on the couch across from me. With the rod and cone damage, high contrast is very helpful – white paper on a dark surface, black backgrounds with white writing, or a black plate with light color foods such as potatoes.

It is hard to explain what I see because surroundings and situations are different every minute. One thing I have never thought about when I had full vision is that everything you see is connected to something else within a spatial area. A tree is attached to ground, the branches meet the sky, and the sky runs into clouds. A hand is connected to an arm that is connected to a body. That body might be sitting on a bicycle seat attached to a bike that is on the ground. When you look at things like that as a whole picture you do not make that connection, your eyes do it for you. My eyes do not do that anymore because they only see the donut hole in the center and a few spots on the outside of the donut. If I am looking for a swing hanging in a tree, I can’t just look at the tree and see the swing. I may spot the sky and have to search for the tree. Then I have to move my eyes around to hopefully find a tree branch. Now I need to figure out if that tree branch is on the top, left, or right of the tree. I will have to follow the branch to the tree trunk, then scan my eyes all around the bottom branches to find a hanging swing.

I remember going up to the bone marrow transplant unit once. Mom had dropped me off at the door and headed to the parking deck. I approached the elevator and attempted to press the button for the floor I needed. I held my hand out to press the button and could not find my own finger. I had to scan my eyes around and search for it. Once I found it, all I could see was the end of my finger. I could not see my hand or arm to know where my finger was in relation to the elevator button. All I could do was keep my eyes focused on my finger and move it around until I saw it over the elevator buttons. Because my finger tip looked like it was floating in the air, I did not know if the buttons were to the left, right, top, or bottom of my finger. It was such an odd feeling to know my finger was sticking out to mash the elevator button, but I could not see it.

It is so hard to explain and understand if you do not see how I see. I do not realize I am not seeing certain things. I am still seeing one entire picture of my surroundings, only part of it is missing, but I do not realize it is missing. It looks to me like I am seeing everything.

Right now, as I am typing this story, I am sitting in my recliner, the TV is on in front of me. There is a window and chair to the left of the TV. As I look at the TV, I see the TV and the computer in my lap but I do not see anything between my laptop and the TV. I do not see the chair to the left of the tv or part of the fireplace to the right of the tv. When I am looking at the tv I do not realize I may not be seeing something that is on the floor between me and the tv because that area is just not there. I see my keyboard and my tv so I have no reason to think anything is between the two objects.

I have tried to explain what I see, but it may have confused you more. I have to search to find things with my eyes. Once I find it, I see it clearly. The sun needs to be behind me and lighting needs to be good. I am so grateful the doctors figured out what was happening and prevented complete blindness. I am grateful for what vision I do have, and pray every day to keep what I have left and for a miracle to heal my eyes.