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

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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Today I went back to school. It was my first day as a junior in the 2022-2023 school year at Salem High School. Exciting, right? Yeah, no. Not even close. 

Not to sound negative, but I despise high school as a whole for countless reasons. Mostly, I find it hard to coexist with other people-social anxiety. Especially when those other people are high schoolers. Add to that my low vision and I have the perfect storm for what is guaranteed to be the worst day of the year. 

There are tons of situations and circumstances that complicate my first day of school because of my low vision. They all played a part in making today especially difficult and stressful.  

Finding My Way Through School

Figuring out where all my classes are and maneuvering through the halls on the first day is possibly the hardest part of starting any school year with low vision. 

New schools

This is the most concerning when going to a new school. I’ve had it easier the past few years since I have been in the same building since seventh grade. I truly sympathize with anyone who has low vision and is starting at a new school building this year. It’s beyond stressful and there’s not much to be done to counteract that. 

I remember my first day at SHS, and it was much worse than what I dealt with today. Everything was new and scary. The hallways were crowded and I couldn’t tell where I was, let alone where I needed to go. The only reason I made it through the day was the orientation all seventh graders had to go to before school started. This gave me a chance to see how the building was laid out and where some of my classes were. Of course, it was much harder on my first day without my parents. Plus there were hundreds of kids pushing and shoving in the hallways. 

The orientation still helped to some degree. Without it, I probably would have been late to every class that day. If you have issues with navigating because of low vision, I highly recommend finding a way to preview a new school building before the first dau. Even if your school doesn’t offer an orientation of some sort, I would guess that most school systems would let you walk the halls before school starts anyways. 

New classes

Even though my school building didn’t change this year, my classes did. Finding my new classes presented a challenge of its own, despite my being familiar with my school. It helped that the building isn’t too big so I pretty much knew the general area of all my new classes

I only had a couple of classes today that were in rooms I wasn’t familiar with. I wasn’t exactly sure where they were, but I had at least memorized the room numbers. You would think it would be easy, or at least doable, to find a classroom once you know the room number. It’s not, at least not for me. 

The room numbers are on the tops of the door frames and are insanely small. I am short and have an eye disease. The numbers and I don’t get along all that well. It takes more than a brief glance for me to read them and others aren’t exactly polite enough the walk around me as I squint upwards in the hallway. I was pushed around more than once in the crowded hallways of SHS today. I found all my classes eventually, and everything turned out fine. 

New classes still aren’t nearly as terrifying as a new school, but they’re nothing to laugh at, either. 

Telling The Teachers

It’s hard to tell anyone about my low vision, but teachers are the worst. My biggest worry when telling someone about my situation is how they’ll react or if they’ll understand. When telling teachers it’s even worse because I need them to understand, or I’ll have a long school year ahead of me. 

It would probably be best if I had this discussion in person, face-to-face. Maybe find time on the first day to pull my teachers aside and explain my situation. This way we could get a better sense of each other and what will work best for dealing with problems throughout the year. I am way too scared to do that, so I just send them all emails. I make sure to be extra polite, formal, and detailed about my situation. So far, I have always received positive responses. This may change when I go to college in a couple of years, but I hope not.

For any other visually impaired teens who are as socially stunted as I am, I want to share a general draft of my emails. You can feel free to use it as a guide to write your own back to school teacher emails. It is a tested and fool-proof resource. You can find the draft here

 

Overall, the first day of school is hard, especially for kids with low vision, or any type of disability. No matter how much you prepare, it’s an unpredictable mess of a day. I would love to say that after the first day, things start to calm down, and life is easy. That’s kind of true, but also not. It may get a little easier to navigate my days, but other problems will always pop up, big and small. The best thing that I or anyone else can do is take it one day at a time. 

For another school related story about my struggles with low vision, check out my previous blog post My Mini Success Story.

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There are thirteen stairs in both staircases in my house. There are sixteen stairs in the staircase going down to my dance studio. In any given staircase at my high school, there is either 5, 6, 7, 11, or16 stairs. 

Counting stairs makes life easier. It’s a fact I apply in my daily life. Every time I walk up or down a staircase, whether it be new or old, I count under my breath. Then I remember those numbers and hold on to them for dear life. 

Why Count Stairs?

Walking up or down stairs may be no big deal for others. They do it without a second thought. Sometimes they don’t even watch what they are doing. They can actually rely on their peripheral vision to tell them when to step and how many times to step. 

I can’t. Staircases are a much more terrifying climb for me. When I can’t see where the stairs start or end, it is a very real threat that I may fall. And the more uniform the staircase, the harder it is to see the separation between stairs. Don’t even get me started about climbing stairs in the dark. 

That’s why I count. So I can know for sure when to start and stop climbing. Peripheral vision works great, but when you don’t have much of that, numbers are the next best thing. 

So I don’t look down or fumble on staircases that I know, but it’s not because I can rely on my vision. It’s because I can rely on my counting. 

Staircases: Up vs. Down 

There is a difference. A big one. And it all has to do with shadows. It can be hard to describe, so I am going to use some pictures to help. 

Image of a staircase taken from the bottom of the stairs. The contrasting shadows on the stairs demonstrates that is it easier to see the separation from stair to stair.

Climbing Upwards

Up is way easier. I don’t need to count for up at all. I can clearly see the separation between steps because of the shadows from the steps above. There is contrast, and contrast makes it doable. 

Image of a staircase taken from the top of the stars. it demonstrates the lack of contrasting shadows and how the separation between each step is almost undetectable.

Climbing Downwards

Down is a different story. There are no shadows. No contrast. Everything looks like a flat slab with no ledges whatsoever. I have to count to know how many ledges are hiding in the seemingly flat expanse. 

The Flaws With Counting Stairs

Finding stairs

Counting isn’t a perfect end-all solution. It helps to know how many steps lie before me, but remember that endless expanse that I face when I go down stairs? Counting isn’t going to help me find those hidden ledges. It only lets me know how many there are to find. 

Finding the first few is the hardest. I have to feel with the toe of my shoe until I find the drop and then step down. Once I get past those first few, I find the rhythm of the staircase and can figure the rest of the way down. 

New Stairs

Counting is completely helpless when I come across a new set of stairs. I’m obviously not able to count new stairs until I climb them, so that first climb has to be done without the counting method. 

Other Habits

Counting stairs is a unique habit that has a direct tie to my vision. It’s a part of my everyday life that helps me get through a challenging normalcy in an easier way. This isn’t the only trick I use to make life work for me. 

I have a few other habits that help me deal with my low vision:

  • Giving objects a “spot” in drawers or bags. This allows me to just grab something without looking rather than searching around in a dark drawer. 
  • Using my peripheral vision. When I find myself in the dark, I use my peripheral vision to figure out my surroundings. There is a scientific reason why this works that has to do with the location of rods vs. cones in the eye. All that really matters, though, is that it works, and it comes in handy. Trust me. 
  • Using touch over sight. The sense of touch is a trick in itself. There are so many times daily when I catch myself feeling my way through a task that others would use their eyes for. I do it even when I don’t have to. It’s habit. Things like buckling a seatbelt, tying my shoes, or cutting veggies (this one scares my mom). There are a thousand more examples of things I feel my way through, but I made my point. 

My low vision lands me doing many things like counting stairs to aid in every day life. Little tweaks I make to normal tasks to modify them for my use. It’s something I have learned over years of experience dealing with a vision impairment in a seeing world. It’s called adapting and everyone has to do it in their own way. I found mine and I hope that all of you can find yours. 

 

To read about one of my vision related staircase struggles, check out my previous blog post Annoying Kindnesses.

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It’s always nice to find a helping hand, right? The people surrounding you that are aware of your vision impairment and are willing to be of aid in challenging moments. It’s important that we are always grateful for their kindness. Sometimes, though, it’s hard to be grateful. Maybe every once in a while you get fed up with the “charity” or “pity” offered by others. Or maybe their kindnesses seem almost pathetic to you because they are entirely useless to the point where they become annoying. When really it is you who feels pathetic and not the kind act bestowed upon you. 

I have felt this way many times over again in various scenarios towards various people. It’s okay to get annoyed by kindness sometimes. You have every right to those feelings that hit you like a rock when you’re handed a flashlight or someone grabs your arm. It may in reflection seem wrong to hold resentment against kindness, but it comes with the territory of vision impairments. Just one more thing to grin and bear. 

Here’s an account of one of my more recent run-ins with double-edged kindness. 

 

The Initiating Event

I walked into my seventh period class on the last week of school. It was one of those classes that wasn’t really a class anymore as it was so close to summer. Somehow the decision had been made to go sit outside until class was over. I didn’t care either way. We all walked down the stairs and out the door. 

Then there were two concrete steps right outside the door. You know, the kind where you can’t tell where the ledge of the first one drops off so you have to feel with your foot for the edge. I was rushed because of the people behind me so I almost tripped down the step when the teacher grabbed my elbow and helped me the rest of the way down. I was grateful for her help and we continued farther outside. 

 

The Annoying Kindness

After class that same day when we went back inside, my teacher asked if I needed help up the stairs. I could clearly see the separation now from the ground angle and politely declined her offer. Still, I couldn’t help but feel a little annoyed. 

Later that week, we went outside again. This time, my teacher asked if I needed help on the stairs in the building. I shook my head no and kept walking. I felt vastly more annoyed that the day before and a little incompetent. It’s not like I had walked up and down those stairs every day of the school to get to her class or anything. 

Then when we reached the concrete stairs this time, my teacher helped again.I appreciated it, but less this time. 

Then my teacher asked if I was okay walking up a slight incline in the grass. I mean, what is that? It was just grass.

Needless to say,m I was annoyed

 

In My Mind

I felt pathetic. Weak. Helpless. 

I was annoyed. But I was annoyed at myself. 

Everything I was feeling combined into this annoyed frustration with my own limitations and how pathetic I thought I must look to other people. I hated myself for what I couldn’t do. Hated that I needed my teacher to step up and help me down those stairs. Couldn’t stand that she was so careful around me whenever she thought I might be struggling. It’s hard to need help with an action as trivial as walking down a few stairs. Those overpowering emotions consumed me and I felt like I wanted to scream at my teacher to leave me alone. 

But it wasn’t her fault. I wasn’t annoyed with her at all. She was kind enough to help me when I needed it, even if I didn’t want it. I projected my anger with myself onto her because it’s easier to blame another person’s kindness than to own up to your own weakness. I greatly appreciated her help because I needed it, but that didn’t erase the frustration I had with myself.

 

More About Annoying Kindnesses

Annoying kindnesses can be a common occurrence for all of us visually impaired individuals, and that’s okay. We have every right to our annoyance, as long as we don’t take it out on the person offering the kindness. They are only trying to help and we have to respect them for that. 

It is also okay to refuse kindness, even if it would be helpful. Sometimes it’s easier to struggle through the dark than pretend that the dim flashlight being held by the person next to you is actually helpful. It’s also important to accept help when you need it. We don’t always want that person next to us to grab our elbow and lead the way, but it can be a necessary aid when you are working with less than perfect vision. 

The two-faced nature of annoying kindnesses can be difficult to handle. We have to appreciate the kindness while we combat the rising annoyance. It’s hard, there’s no way around it. Sometimes it helps me to remember all the different things that I’m good at, so maybe it’s okay if I need a little help with this one aspect of my life. Everyone needs help sometimes and who knows when it will be my turn to help someone else. Maybe if we all helped each other more then it wouldn’t be so hard to accept help when it is given to you. 

Anyway, kindness it a good thing, whether it is found annoying or not. We all need to learn how to give and take kindness a little bit better. Then that dull flashlight in the middle of a dark parking lot might bring a smile to our faces instead of a scowl.

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In 2022 we need to keep our eye on the finish line and join together to fight blindness.

This blog post goes out as a message to all the CRBF families about the foundation’s new Eye on the Finish Line campaign, but everyone else keep reading because you need to hear this too.

 

Happy holidays everyone! It’s that time of year again when everything is crazy, stressful, and there’s no time to slow down. With this season comes the end of one chapter and the beginning of another. We will say goodbye to 2021 and wait to see what the new year will bring. The resetting of that clock provides a clean slate on which we will set goals for the new year. Everyone makes their lists of what they wish to accomplish and hope they will actually stick to it this time. Well, I have a favor to ask you this year. I’d like you to add one more thing to that list before the new year comes: Join The Fight Against Blindness.

Our Fight Against Blindness

The Curing Retinal Blindness Foundation (CRBF) has been around and working hard for over a decade. We raise money and fund research projects in hopes of finding a cure for the CRB1 gene mutation. This is a rare mutation that received little attention in the medical world before CRBF was founded. This organization is a collection of families from across the world who are affected by CRB!. We all want the same thing, to find a cure and fight against blindness. It may seem like a daunting task, but we can be capable of so much when we come together and fight as one. We can fight blindness, but our success depends on all of us working together to reach our collective and attainable goal. 

What’s Been Done

Guess what? A lot has already been done in this fight. The rest is the easy part that you get to join in on and relax for the rest of the journey. We’ve had hundreds of fundraisers and raised millions of dollars. All these years of work have gotten us far on our journey. We as a group have learned a lot in this fight and have been through even more. All of us have our own stories about our experiences as part of the blind world. If you would like to read some of my personal stories, you can look at a couple of my previous blog posts like My Mini Success Story  and All the Little Things. We know how to fight now and have all of the information to help you fight. Visit  our campaign page to learn more about our campaign and how you can help. (This information may not be published yet, but we promise to have it up soon so make sure you re-visit this link!)

What’s About To Happen

We are so close to the finish line. In fact, the foundation has just launched a new campaign to help us keep our eyes on that finish line. All of our work is finally paying off. There are only a few more obstacles before we reach our ultimate victory. In other terms, a cure is in sight. We could literally see results in the next few years. We have seen quick success overnight and are more than ready for the payoff of all of our hard work. Everything is falling into place at last. All we need is for everyone to join together and give one final push to send us over the edge.

We Need Your help

If there ever was a time to join the fight, its now. It doesn’t matter how small your contribution or how little your donations, we need all of the help we can get and as many eyes as possible on that finish line. Especially our families out there. The foundation is working to put together a Fundraising Toolkit. Email   kim@crb1.org for more information. The toolkit will allow you to organize your own fundraisers in your local communities   Anything you can do will help, and I mean anything. As far as everyone else, DONATE. Go to our donation page and press that donate button. Every penny helps. We don’t even care if you literally donate $0.01, just PRESS THE BUTTON. (Just kidding. We would politely ask that you donate more than a penny. Though, hey, if that’s all you got, then we’ll take it.) The more we come together, the faster we will find a cure. 

New Chapter

New year equals new possibilities. With the ending of this year’s chapter we turn the page to a new chapter with new opportunities. If we achieve our collective resolution this year of coming together to fight blindness, we will be that many steps closer to our goal. Hopefully, we can work together to keep turning pages and eventually reach the end of our book by finding a cure. Then we will be free to start a new book, and tell a different story. 

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