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.

Share Your World-Revisited (September 3, 2018)

I’m joining in with Share Your World – Revisited. It’s revisited because it’s now with a new host. I realize I’ve only participated in the original SYW once, so for me this isn’t a huge transition. For Sparks’ first week, she has a few really good questions to spark (pun intended) our creative thinking.

When you are old, what do you think children will ask you to tell stories about? If you are “old” (a term with different meanings for everyone); what stories do you tell your grandchildren?
I don’t have children and don’t ever intend on having any. I also don’t tend to gravitate towards children, so I don’t tell any outside kids any stories and probably never will. That being said, I love reading stories to my inner children. I don’t make them up myself though. I love free children’s books on Amazon Kindle. May post (or have my inner children post) some thoughts on some of them someday.

When did something start out badly for you but in the end, it was great?
My life. No, it isn’t necessairly great, but it’s better than it started out as. I was, after all, born prematurlely and had to be on the ventilator for six weeks. I’m now pretty content with life and above all, I’m here.

What do you think you are much better at than you actually are? Maybe this one’s kinda mean…thoughts?
English and writing. No, I’m not fishing for compliments. I used to write stories as a teen and thought I’d someday be a published writer. Then my husband told me my stories aren’t all that imaginative and he’s probably right. I did get one piece published in an anthology, but it was non-fiction.

As for English, my husband is able to take a test that guesses your level of German fluency that’s itself in English and scores at C1/C2 level (those are the two highest levels). I don’t speak German at all, but sometimes I think I could reach that level of English fluency. Well, I can’t.

What would be the worst thing to hear as you are going under anesthesia before surgery?
“I guess she makes for a good experimentation object.” Seriously though, I don’t know.

What did you appreciate or what made you smile this past week? Feel free to use a quote, a photo, a story, or even a combination.
Seeing my riding school horse Angie for the first time after summer break.