It’s time for an update! If you're really curious about this photo, keep reading! As you may know, the central vision loss experienced with Stargardt’s Disease is progressive. For many of us, we begin to lose our vision very slowly at first. Then we might experience a period of more rapid vision loss. Eventually, it is expected that our vision loss will plateau. My vision has changed since the last time I reported on it. But first, lets backtrack just a little. I was born with 20/20 vision and had that luxury for many years. At the age of 19 (my junior year in college), I began to notice that my sight was being challenged and something just wasn’t right. I still remember exactly what “seeing” looked like at this stage in the degeneration process. Check out my post “What Do Blind People See?” for a detailed description of my sight up until this point (i added a picture that shows the donut hole much better since i found this cool blur app!) .
I am 25 years old now and I no longer have the wonderful “pinhole” vision (I described it as a donut hole in that post). I call it wonderful because although I’ve had a large central blind spot throughout this experience, the small clear sighted “hole” in the center of that blind spot used to really help me to be able to read smaller fonts and see smaller patterns. I could, at that stage, slowly scan print materials three letters at a time. It was very weird for people to understand. I could see really small things (through my central pinhole) or really large things (through my peripheral) but not normal sized things (hidden in my central blind spot). This is why I compare it to a donut: the donut itself is the central blind spot and the donut hole is the central pinhole that I could see through. This pinhole vision is what got me through college and the Dental Admissions Test successfully. Yay Pinhole!
So... If you focus your gaze on the center of the donut (you must focus on this one point because your eyes are only capable of looking directly at one point.. always), anything you can kind of see outside of the donut would make up the entirety of my vision.. Peripheral! (OMG I hope that makes sense).
Last year, on the Rachael Ray Show, I mentioned that the hole was beginning to distort; perhaps in the similar way that I first noticed my sight changing at age 19. Nowadays, that pinhole has become useless and describing what I see has become more challenging. One thing I’ve learned for certain is that “20/400” does not tell you enough about a person's vision. I was 20/400 at my last eye exam (I’m six months overdue for an exam, sorry!) and I don’t know what my visual acuity is at the moment. That’s my point. This number doesn’t give us much understanding as to what I see. What matters is the size and shape of my blind spot and my sensitivity to lightness and darkness.
I think the best way for me to explain what I see nowadays is through pictures. They won't be perfect representations, but very close to it! I’ll show what most people see in one photo and then I’ll show what I see looking at the same photo. Please read the explanations to understand it properly.
Imagine this is I looking into a mirror. Most people can look at any point in the mirror and see a detailed image like this:
When I look directly at my face I see this (only look directly at the blur):
So what if I want to actually see my face? Then I will look away from my face at a place nearby. This place disappears and then I can see my face in my peripheral vision as I continue to gaze into the blind spot. But here’s the challenge: PERIPHERAL VISION IS NOT DETAILED. You cannot just see the details of the rest of the picture by looking around and ignoring the blur. If you looked away from the blur to see my face or hair, you used your central vision. Try to see my face while staring at the blind spot because I can never look around my blind spot. You can do it! Try zooming in!
I usually look above and left/right of anything i want to see in my peripheral vision. So technically i would put my blind spot right above the "A" in the photo to look at my own face. Its just a personal preference or natural adaptation I acquired over the past 6 years.
I also want to remind you that this description is of my personal experience with Stargardt’s Disease. The blindness associated with Stargardt’s and other retinal diseases can vary from person to person and be very similar or very different from mine. This is a very accurate description of MY eyesight at this point in my journey (6 years living with macular degeneration)!
Here are some more photos to play with. They are pictures of my most informative blog posts and the titles of the posts are in the caption if you want to read these posts on the blog. Click a photo to toggle through them all and read the titles/descriptions. Love always!
"A person who only sees with his eyes and not his heart misses the details of beauty." - Evie Lynn Fritz