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Last week I stumbled over a cord.

It was the end of Spanish class. I slung my bookbag over my back and started to make my way out of the classroom. My next class was physical science all the way at the other end of the hallway. As I passed the second column of seats from the door, I failed to notice the cord across the floor. It was only a few inches from the ground. Between my nonexistent peripheral vision and mask I missed it.

It caught my feet and I hopped back to escape a fall. I looked down to see the cord for the first time. Feeling both angry and embarrassed, I rushed out of the room. 

On Monday I was in a dark parking lot.

I was coming out of dance class around nine o’clock on Monday night. Usually my mom sits in the car during my class then pulls up closer to the door when the other cars leave. It is easier for me to be able to come out of the door and turn straight into the car rather than walk through the dark. 

Instead, my mom had come in with me to order my costume for competition. As a result, the car remained four spots down from the door. When I emerged from the light of the studio to the pitch black of the night, I had to take a second to readjust. Even exhausted I felt the familiar wave of frustration and fear come over me. I took my mom’s hand and walked slowly to the glowing headlights. Once I was seated in the car I let out a long breath. 

Today in class I squinted at the board.

We were reviewing for the test tomorrow. The teacher had prepared a review game  for us to play using our chromebooks. The basics of the game were to read the questions and answer choices on the board, then click the shape on your screen that corresponded with the correct answer. It’s really quite simple, unless you can’t read the board. 

At the beginning of the game, I tried. I leaned forward in my seat, squinted at the words, and made out some of it. Then the answers got longer and the words got smaller. I was done. For the rest of the game I clicked random answers and stared at the wall. It wasn’t like the review was graded. I didn’t care. I was annoyed with both the situation and myself. 

The point of all these stories?

We all face our own daily challenges with our low vision. No matter how much or how little of your vision you have lost, it comes with its own set of obstacles.

All the little daily annoyances can add up. There are also the bigger challenges that we face. I am, for example, starting to worry about how I am going to take the ACT for college. The mole hills can wear us out just as much as those mountains can.

There really isn’t a lot that can be done for these small inconveniences. We can ask for help and work through it, but in the end, we have to just deal with it sometimes. These things have happened and will continue to happen to all of us. The world isn’t designed for blind people. We have to adapt to fit the world.

It’s not easy and sometimes it can get to be too much. The only advice I can give is to keep faith. Things might get worse before they get better. Especially with a progressive eye disease and no known cure. All I can tell you is to try and adapt to the sight world, hoping one day it will fit us a little bit better.

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I don’t like to talk much. By this, I mean that I almost never speak outside of my own house. 

Since speaking at all is such a challenge for me, I rarely , if ever, speak up when there is something I can’t see. It can be hard, especially in school. When the font on a paper is too small or I can’t see what is written on the board, it is not easy for me to fix. Most of the time I will just sit there, not saying a word. Then I am left to try to find a solution on my own. I would honestly rather suffer in silence than ask for help.

Last week in one of my classes we were watching a video and our assignment was to answer questions to go along with it. The questions were on a worksheet that we were expected to complete while the video was playing. I knew what was coming next. I had experienced it many times in other classes before and a few times in the class I was in then. Still, I hoped that this time would be different. It wasn’t. After the teacher finished handing out all the papers, he walked up to the front of the room and turned off the lights. 

 

Here’s a chronological list of what happened next:

  1. The anxiety bubble formed in my chest.
  2. I calmed myself down to try and figure out a solution.
  3. I held my paper up to the light coming from the window. It didn’t work.
  4. I tried to answer the questions blindly in the dark. It didn’t work. 
  5. I sat and cried quietly for the rest of the video.

 

Fortunately, after the video I had free time in class to look up the answers on my chromebook. I lucked out this time, but this doesn’t always happen. For the most part, my teachers have been very understanding in these types of situations. Usually I am able to smooth over the problem after the fact. They understand that I am quiet and because of my eye disease they give me some leniency. It is still a hassle on both ends, but it gets me by. I know that life could be so much easier, though, if I just spoke up and asked for help. 

I know it would be less work for me if I admitted when I needed help in scenarios such as the one from class last week. Every kid with low vision does, but not all of us speak up. Why?

The answer is both simple and immensely complicated: We don”t want the attention.

Asking for help sheds light on our short-comings that would otherwise go unnoticed. An eye disease is not something you can see on the surface. It can be easily forgotten by people around you. My mom has on several occasions forgotten to help me through a dark area, assist me in reading small type, etc. There have been times when my condition even slips my mind for a second. 

In this way, an eye disease is very much like that box that you keep under your bed. You can forget that box is even there until you need something from it and shine your flashlight under your bed to find it. Asking for help is a blind kid’s flashlight.

Where light shines, people will look. What I mean by this is that when something is happening, people may take notice. Granted, not all of them will because they simply don’t care. Even so, when you are in that situation, you never know what will happen after you admit to needing help. You could think others are judging you and rolling their eyes at your annoying default. You could worry that the person you are asking for help may not even give it to you because they are irritated by the request. It is awful, being stuck in that place. Not knowing what to do or say to make the problem and anxiety go away. Most often, you end up doing nothing at all. 

I get it. Rarely do I ever speak up for myself when I need help. It is scary and overwhelming and seems impossible to do without dying. I am probably the wrong person to give this advice, but I am going to do it anyway. Maybe you will listen to me since I experience it, too. Although, you know that you don’t listen to your mom all the ten thousand times she has told you the same thing. I know I don’t. Well, here it is:

SPEAK UP

You could make life so much easier on yourself if you just did this one thing. I know it is harder than it sounds. Believe me, I understand. I get that you are probably sitting there shaking your head at your screen right now as you are reading this. You are thinking that there is not\ way you will ever speak up for yourself when it comes to your low vision. 

How about this? I will make you a deal. If you can promise to speak up for yourselves the next time you can’t see something, then I will, too. It is terrifying to think of speaking out alone, but if we join together then maybe it won’t be so bad. Next time you need help in school or anywhere else, just remember that when you speak up I have your back, and I hope that you have mine, too. We are stronger together than we are alone. Let’s prove it by shining our lights together and making our world brighter, one flashlight at a time.

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It’s official. I turned fifteen and a half years old this week. You know what that means. I am now old enough to get my driver’s permit. That’s a good thing, right? Exciting. The key to independence behind the wheel of your mom’s stinky old duct-tape-is-holding-it-together van. The day every teenager dreams of until it comes. I should be bouncing off the walls and screaming joyously at the top of my lungs. Well . . . it’s a little more complicated than that, and by complicated, I mean terrifying.

I have always wondered in the back of my head if I would even be able to drive with my low vision. Well, last month my eye doctor gave me the “okay” on getting my driver’s license. With some restriction of course. One of which will be no night-time driving. The problem about getting my driver’s license though is: Do I want to?

I have discussed it with my mom and we both agreed that I should get my license if for no other reason than just to have it. Having a driver’s license does not, however, mean that I have to use it. To be honest, I probably won’t unless I absolutely have to. It’s just too overwhelming.

In my head I keep running through everything that could go wrong when I am driving. What if I miss a speed limit sign and get pulled over? If I don’t see a squirrel or bird in the middle of the road and accidentally run it over? Or if someone pulls out in front of me and I don’t see them fast enough to hit the brakes? I could get in an accident. Someone could get hurt. 

Someone could die.

Not just me but other drivers, too. I could accidentally cause another person harm or even kill them. That is probably the most terrifying thought I have ever had. It might seem a little dramatic, but it is not really that impossible. People get in wrecks all the time. Why not me?

These thoughts may run through every young driver’s head, but for me it is a thousand times more worrying. My low vision is something I cannot control, and I really do worry about the challenges it could create when I am behind the wheel of a car. Not to mention my anxiety could cause some major problems on the road. My height as well. I am less than five feet tall. Do you know how awkward it is to sit in the driver’s seat of a car when you are that short? Straining to see out the windshield while stretching your legs to try and reach the pedals? Not fun.

All these factors jumbled together just does not add up to an optimistic attitude towards driving. As much as I might try, I cannot control my worries anymore than I can prepare for what is coming when I get behind the wheel of a car. I just have to do it and hope for the best. It is not like I am going into this alone either. I have several experienced drivers around me, such as my parents and my older sister to help me through this. I just hope I can make it out of this alive, and that everybody else does too. 😉

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February 24, 2021

Today I went exploring outside. In my house, I am the most comfortable. I am safe. It is familiar and I know what’s around every corner. It is home.

Outside of these walls, there are a lot of unknowns. Sometimes at once, and it can be very overwhelming. I can’t look around at my surroundings and see what’s 20 feet away so I’m learning about these unknowns in a different way. The wind blowing on my face, a car horn honking, a dog barking, a twig I stepped on, an airplane flying by, the siren from a firetruck. I hear my brother laughing but where is he? Where did he run off to? I freeze when I discover something new, but I’m slowly learning about things in which I cannot see. I can see my feet, so I’m just going to focus on that and often look down when I walk. You got this, Cora. One step at a time. Let’s go explore. 

Today as I was walking on the sidewalk, I noticed a dark spot. What is that thing? It moves when I move. I lift my leg, and that spot lifts too. I stare at what my mom is calling ‘my shadow’, curiously and cautiously. And then I turn and see an even bigger dark spot on the sidewalk in front of me, blocking my path. Mom says it’s a tree Shadow. That is huge! Is it a giant step? Is it a hole? It’s so different than the surface I’m standing on. If I step on it, will I fall? Will I get hurt? It’s so bright on this side of the sidewalk where I am standing and I can see more clearly what’s around me. That looks dark over there in that “shadow”. Ehh…I think I would rather not. I don’t trust those things called Shadows yet. It’s playing tricks on me and my eyes. My depth perception is off and I feel very uneasy. So I turn around and go back where I came from, from the familiar path I just walked. Tomorrow though, tomorrow is a new day. And tomorrow, I may take a step into the shadows.

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When you have low vision it isn’t always about just not being able to see things. Sometimes the struggle is in admitting when you can’t see those things and that you need help. I have always been an extremely shy and timid person. The thought of trying to speak out about something I can not see is terrifying. It doesn’t help either that I can tend to be a bit stubborn and don’t always want the assistance of someone else. I prefer to do everything on my own. With these flawed characteristics I often have to work harder than necessary to fight to see small or far away things when I could just admit my shortcomings and ask for help. 

This issue is most prominent when I  am having trouble in school. I am not exactly the equivalent of a social butterfly so I don’t usually talk much at all. Occasionally when a paper is handed out in class or there are instructions written on a board in the front of the room the print will be too tiny for me to be able to read. When this happens I will get so stressed knowing that I need to ask the teacher or at least a classmate what it says so I do not miss any important information. I clamp up and get so scared I mentally freeze and have no idea what to do. I’ll start to freak out and possibly cry over the stress of the problem. After a while I manage to calm down enough to figure out a solution which is almost always easy and quick. Once it is all over I feel stupid and embarassed for getting so worked up over a tiny little problem that was solved in no time. It just seems so terrifying when it happens because it would be so much easier if I could just see whatever small font or written directions that I needed to.

There was one particular incident in grade school that was probably the worst situation I have had to deal with regarding my eyesight. One of our graded assignments for that week was to identify vocabulary words by their definitions. We had to do this by reading the definitions off of a set of flashcards that the teacher had made and then saying the correct word for the given definition. When it was my turn to go back and complete the assignment I was mentally trying to prepare for having to speak to a teacher. What I wasn’t prepared for was not being able to read the flashcards. When I saw how light the pencil markings were on the cards I choked. For what seemed like the longest time I just stared at the card trying to make out the barely visible words enough to identify what word went with them. I was so scared I could barely breathe. Then the teacher spoke in the snarkiest voice. Can you not see it or do you just not want to talk to me? My breath caught in my throat and my fidgeting hands went still. I couldn’t believe this was happening. In a shaky, small voice I admitted to not being able to see the cards and he rewrote the definitions in pen. I went through the cards as quickly as possible not caring if I got any of them right. Quickly walking back to my seat I held back my tears so that the teacher would not see them fall down my face. I sat in my seat and silently cried until I could compose myself enough to finish my work. 

I actually consider myself lucky because this was the only time I felt as if I was being judged for my low vision. No one else had before or since made a comment so harsh to me about my vision loss. To be honest, the experience was not even that bad compared to what some other kids with vision loss go through. It still hurt when it happened, though, and I can’t say that I have forgiven the teacher for the comment they made. Sometimes these things happen especially with my personality and I just have to learn to live with them. That’s just life.

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