When you read this post remember that it applies to my own experience and that people with Stargardt’s or other visual impairments are very unique. Stargardt’s can progress at different rates in different people and what I see may be different from another ‘Star’. What we all have in common is a decrease in central vision.
It’s actually hard to describe what I see without rambling. Here’s my best shot at it!
It’s like looking through a donut held away from you at an arm’s length. The donut part is the portion of my vision that is “blind” or completely missing. In ideal lighting, I can see through the center of the donut but it is blurry and wavy (as if it was written on a hill). Here is a picture of what the middle of the donut almost looks like for me. You can download the app I used and play with it (VISION SIM). Just select “Age-Related Macular Degeneration” and then select “Launch Simulator”. Try reading your favorite book. Remember to look through the red circle at all times. In real life you cannot look around your central vision, but you can use your peripherals to help you. I cannot read at all with one eye covered; I depend on both of them!
This part is actually pretty awesome (sometimes)…
I’ve learned that blindness is not blackness. When a person loses vision, her brain will try to fill in for what her eyes do not see. The blind portion of my sight (the donut which would be surrounding the red circle in the picture above) looks like a bright blue-green color! That’s all it is. Just a bright color that tries to blend in with whatever my brain thinks it should be seeing. Sometimes the blue blind spot sort of sparkles and flashes. It follows me wherever I look, even when I close my eyes.
Here are some examples of what I see when ...
I look at the door to a room:
If I look near the doorknob it will disappear completely. I see a plain door with nothing on it. If I look further away from the knob it will reappear in my peripheral vision. This is how the door looks with no knob. It just gets filled in white.
I look at your face:
In a well-lit room, when I look you in your eye, I will see your eye but you will appear to have no nose or mouth.
(This is so cool. It's just like the donut I was describing!)
In a dark room, your entire face seems like a shadow. It is very hard for me to pick up on a facial expression or any visual cue. This is how your face appears to me in low lighting.
Transitioning from light to dark or vice versa takes more time than normal. Sometimes the light is so bright that I cannot keep my eyes open (I’ll post about sunglasses and Stargardt’s later). When I move into a darker room from outside I usually can’t see anything for a while. I just pray there is no step down!
When I look at a group of people across the street:
I see the people but I cannot tell who they are, how many there are, or what they are doing. Something is always missing from the picture depending on where I look. I may not see their legs or arms unless I look away. I was unable to find a photo to simulate this but here are some others...
This is really similar to what I would see looking at this. The blind spot would be a bright blue-green and there would be a small "hole" in the middle that I can see through.
This is how I would see this flower. My brain fills in color. I would also see the very center of the flower.
This my view from my terrance! I hope the donut representation makes sense to you.
I hate not knowing if I walked right pass someone I know. I love when people come to me to say hello! Please don’t let me pass you by without us speaking. I love you, I promise.
**New update**-- The wavy photo is how my central vision looked in the very beginning. Now that there are cool new apps out here's a pic I made that shows how the donut used to look reading in 2013:
To see What my vision is like now in 2016 view the post "When I Look in the Mirror - Vision Update"!
It’s not about what you can’t see or do, it’s about what you can see or do. – Nysha Charlene