I Saw…: Coping with Vision Loss in the Age of Social Media

Today’s optional prompt at Life This Week is I Saw…. We are supposed to share photos of what we saw lately. This got me thinking. I saw… nothing really, as I am blind.

I have been totally blind with some light perception since the age of eighteen or so. At age eight, my parents decided to give up on my eyesight, so all reports say I went blind at that age. I didn’t. Legally, yes, but I’ve always been legally blind. Functionally, maybe. I started learning to read Braille at the age of seven. Then again, as a person who lost his vision gradually later in life told me, going from 20/1000 vision to none is worse in some ways than going from 20/40 to 20/1000.

I have more or less accepted my blindness now. Even so, with just a tiny bit of light perception left, I still use it. Maybe I shouldn’t, but I do.

One of the most annoying aspects of blindness for me, as a blogger, is being unable to take pictures. I know some blind people have learned to take pictures, but my parents always instilled in me that photos are for the sighted and I shouldn’t want to pursue a visual activity like this. For this reason, I don’t feel comfortable trying to learn to take pictures. I mean, I feel pretty arrogant for believing I could even ever learn to take pictures.

I did mention to my staff that I may want a tripod or selfie stick or whatever for my birthday. Then again, I fear I’ll knock it over and ruin my phone if I’m not careful.

Maybe I need to ask other totally blind people how they take pictures and how they make sure they are blog-worthy or whether they don’t care.

I remember one day, when I was at the blindness rehabilitation center, the staff asked each of the clients in my group what would be the most important thing we’d do if we regained our sight. Many said they’d be able to travel more independently. I said I’d go into nature and enjoy the sights. Right now, I’d say I’d take lots of photos for my blog.

Blindness: Dealing With Vision Loss #AtoZChallenge

Welcome to day two in the #AtoZChallenge. Today, I am going to tell you about my most obvious disability: blindness.

I was born prematurely. When premature babies could first be kept alive in incubators in the 1940s and 1950s, thousands of children became blind due to a condition first known as retrolental fibroplasia (RLF). The first known cause of RLF was excesss oxygen, as these babies were kept alive because of ventilators and no-one knew that too much oxygen could do harm too. Once doctors and nurses started being more careful with oxygen, the number of RLF cases decreased. However, still, babies develop this condition until today. The name of the condition got changed sometime in the 1970s to retinopathy of prematurity (ROP).

I was born in 1986. At the time, the first sight-saving treatments for ROP had become available. However, early detection is still key to timely intervention. At the time of my neonatal intensive care stay, the pediatric ophthalmologist specializing in ROP was unavailable, so my ROP remained undetected until it’d reached an advanced stage. I did have sight-saving surgery when I was about five-months-old, but I still had only about 20/400 vision left in my better (left) eye.

The bad thing about ROP is that, even though it isn’t in itself degenerative once the baby is out of the NICU, it can lead to further complications throughout life. These can then lead to further vision loss. I developed a cataract on my right eye at age seven. I got it removed, but couldn’t get a lens implant at the time. I could’ve gotten one when I was older, but by this time, my vision had already further deteriorated.

At age eight, when I had only “hand motion” vision (which corresponds to about 20/1000) in my better eye, my parents and the doctors decided to give up on further treatment. I didn’t like it, but I had no say in the matter.

From that point on, i was treated like I was totally blind. I wasn’t, but to a sighted person, 20/1000 looks like not worth it.

At age twelve, I suffered a retinal detachment in my right eye. From that point on, I was blind apart from slight light perception in that eye. I also suffered decreased vision in my left eye, though I considered myself having some minimal functional vision until I was around 17.

Now, I measure as having light perception in my left eye only and no vision in my right eye at all. Light perception is the ability to discern whether it’s dark or light in a room. For example, people with just light perception, can tell the difference between daylight and nighttime, but nothing else. I have some environmental light perception too. Not sure what the correct term for this is, but it means I can detect where for example a window is located. Occasionally, when the light is right, I still have object perception for large objects such as cars or people (within a few feet’s distance). I do not have form perception though, so I do not see the outline of objects.

In 2013, I had cataract surgery on my left eye. I had suffered a cataract on that eye ever since 2001, but, in keeping with my parents’ view, wasn’t going to have it removed. I finally took the step to ask for surgery when I was 27. I didn’t have my hopes up too high. I mean, the university hospital ophthalmologist had gotten my old records from age eight and hoped I’d get that amount of vision back. I just hoped for some color perception mostly, The surgery again was a partial technical success, in that they couldn’t give me a lens implant again. They offered me a second surgery to place it, but the doctors were by this time able to see my retina had atrophied and offered me little hope. I decided not to pursue the second surgery.

Dealing with vision loss can be hard. I mean, to a sighted person, I am considered blind from birth, but I still valued my residual vision when I had it and miss it now that it’s gone.