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It is a simple photograph of me explaining my eye disease to my mom
It is a simple photograph of me explaining my eye disease to my mom

Explaining My Eye Disease

It’s a complicated thing, an eye disease. Most things in life are complicated, at least those worth knowing. Things like who we are, human behaviors, and how the world around us works can’t be explained in one simple sentence. Place also in that category the inner workings of the human eye and how they deteriorate. 

How I Have Explained My Eye Disease in the Past

Simple answer: I haven’t. 

What’s even the point, anyway? There are so many individual differences from one person’s eye disease to another: peripheral vision, color blindness, night blindness, etc.  Acuity isn’t the only method of measuring a person’s vision, though that is important, too. Most people hear “eye disease” and think “blindness.” How am I supposed to explain all the little parts and how they apply to me individually to every person in my life? I can’t. 

So I didn’t. I kept everything to myself and pretended like it wasn’t an issue. Whenever there was a problem where I couldn’t see something, I didn’t try to tell anyone about my situation. If anyone asked, I would always tell them “I’m fine” and move on without saying more. I pretended that my eye disease didn’t exist around everyone else, so much so that even  forgot about it sometimes.

It was nice, forgetting the one thing that was so obviously wrong with me. Maybe that’s another reason why I never wanted to explain my low vision to anyone else, because the more I talked about it, the more I had to think about it. It’s easier to forget your own faults when you hide them from everyone else, fooling yourself right along with the rest of the masses. 

How I Explain Now

I realized that I couldn’t hide in the dark forever. Forcing everyone around me to forget about my eye disease only made my life more difficult. I had to start speaking up for myself and letting everyone know about my glaring imperfection before it was forgotten entirely. 

One aspect of explaining something this personal and complex to other people that I recently discovered is that I can’t explain it to everyone is the same way. There are different types of people in my life, and I have to explain it to them in different ways.

Adults/Authority Figures

This group might just be the most difficult to explain to, which is unfortunate because they are also the largest group. I never know what to tell them or how much. Especially with people I have never met before. Its difficult to predict when my low vision will become an issue, so I’m not sure who needs to know and who doesn’t. I don’t want to yell from the rooftops that I have low vision because not everyone needs—or cares—to know about it. However, I also don’t want to hold back and wait until it becomes an issue to explain my situation. 

I try to be more formal when explaining to adults, especially teachers. Depending on the situation or who they are, I will only give them certain facts about my low vision and limitations. For example, I wouldn’t tell my dance teacher that I can’t read smaller than twelve point font, but this is necessary information for any of my teachers in school. I also try to avoid any personal aspects of my low vision, simply divulging the cold, hard facts. 

Young Kids

I can’t say that I deal with a lot of young children in my daily life, so this may seem like a weird category. However, I had an incident a few weeks ago with this little girl that I know, and I thought it was worth mentioning. She is six years old and her mom brings her over once a week so that I can show her a few ballet moves.  She really wanted to learn ballet, and my mom and I were friends with her grandmother who asked one day if I would be willing to teach her granddaughter a few things. 

Anyway, we were having one of our lessons when she asked me to check if her tooth had fallen out.  I tried to look, but I couldn’t see a thing.  I didn’t know what to tell her, so I attempted to explain that I couldn’t see all that well. She dropped the subject pretty quickly and got distracted by something else, which happens quite a lot during her lessons, but I thought it was an exchange worth noting.

I had never been in that type of situation before, where I have had to explain to a little kid about my eye disease. Its hard, because something as complex as an eye disease is difficult to simplify into little kid speak. I doubt it is something I will have to deal with a lot in the near future, but its been bouncing around my mind lately. I thought it was a realization worth sharing. 

My Family

These guys are much easier to talk to and the most comforting. I get to tell them all of the personal and emotional parts of my eye disease. My extended family always wants to know the state of my vision. They might not understand all of the complicated facts that go along with my eye disease.  Sometimes I don’t understand all of it either, but they care about my well-being, which is what’s most important. 

My mom and dad know everything. I swear, they know more about what’s going on inside my eyes than I do. They come with me to my eye doctor visits and sit in on research meetings while I’m at school. I don’t have to explain what my eye disease is to them, but that doesn’t mean they know exactly how it affects me. They can’t see through my eyes to know the shapes of the floaters that block my vision. They can’t live my life to experience how I deal with certain obstacles. I have to tell them all of this stuff, which can be hard sometimes because I don’t want them to worry about me. Nevertheless, I usually tell them everything, even the hard stuff, because they’re my parents and the closest thing to therapists I’ve got. 

The Importance of Explaining

It took me a while to get there, but I finally caught on. I realized how important it is to tell others about my eye disease, and I can’t hide from it anymore. It exists and keeping it inside won’t make it go away. I told myself that i was protecting my loved ones from worry and saving everyone else the hassle of having to deal with me. All I was really doing was protecting myself from having to face the truth. My eye disease is a flaw that can only hurt me the more I try to conceal it from the world. We have to own our flaws and realize that they are a vital part of who we are, or they may just consume us from the inside out.



For more on how I talk about my eye disease, read my post titled Suffering In Silence

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