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Dance competition season ended a few weeks ago. I competed twice and it was amazing to be back on stage after the pandemic. 

The one thought I have been pondering since then is how lucky I am. I feel privileged that I am able to compete in spite of my low vision. It only presents a slight problem back stage where the lighting is low. Even so, it is insignificant to the joy I feel on stage.

As usual, when I started thinking, I didn’t stop. I started wondering about all the other things I am able to do in spite of my low vision. With all these thoughts bouncing around in my head I decided to make a list. I titled it, My CANs and CAN’Ts of Blindness.”

It  was a surprise to me that I was able to come up with a reasonable amount for each side. Let’s focus on the positives first:

My CANs

Dance/Compete: Of course the activity that inspired this list is first the be written down. I have been dancing since I could walk and I absolutely love it. It would never let my low vision keep me from dancing. It has never presented much of a problem before, and I plan to keep it that way.

Put on Makeup: Any dancer knows that you can’t step out on stage without  a full face of makeup. It can be a tedious process to apply, but with an extremely magnifying mirror I am learning.

Read: I can read! Books are my favorite pastime and I am fortunate enough to be able read them without braille yet. This might not last forever, but I’ll enjoy it while it lasts.

Play Piano from Sheet Music: Sometimes I will sit down and draw a song from the keys of my piano. Occasionally, I will enlarge the music, but for the most part I can print off any song and read the music from my piano bench.

Everyone knows that brightness can’t exist without the dark for comparison. Here are the dark spots of my low vision.

My CAN’Ts

Embroider/Sew: I can be a hard-core thrifter. I love to remake old clothing into cute outfits. Sewing and embroidering are the cornerstones of these projects. I have tried and failed to do this on my own. It is too hard to see the tiny threads and needles. It’s not worth it to me.

Look at the Stars: My brother has gotten into astronomy over the last few years. Whenever he and my parents go out to look through a telescope or look at the moon, I don’t. It’s frustrating to squint up and see only darkness.

Play Sports: Balls terrify me. I have terrible depth perception and can never seem to catch them. They more often end up bouncing off my head than landing in my hand. Whenever I see a ball flying through the air, I run in the opposite direction. I was out about sports from the beginning.

Blindness is like everything else in life. There are ups and downs that are out of our control. I find it better to accept the things that I can’t do as just that. It is not accepting defeat, but rather choosing what to fight for.

Everyone has to choose their battles wisely because no one can fight everything. My question to you is: What do you fight for?

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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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