You might be asking yourself why would I read a story about someone losing their vision? I am writing this because I want to share my story. I want people to hear my side of everything that has happened. I want people to hear this and try to do better than how this played out for me.
I am 16 years old and have known for six months that I am going blind.
I started having trouble seeing the white board in class mid-December of 2021. I thought I was just tired and tried to suck it up, so I did not tell anyone. Then summer came around and by then I was struggling to read. I told my mom, and she took me to the doctor who diagnosed me with astigmatisms and said she wanted to see me again in 3 months. She seemed very worried though.
A month later I was back at the doctor where she looked at my eyes and said I think the machine is malfunctioning with the imaging of your eyes. (It was not.) She spent the next ten minutes trying to redo the imaging before realizing that the machine was in-fact not malfunctioning but properly showing my eyes. There was a buildup of liquid around my retina and macula. She predicted I had a Macular Degeneration/Dystrophy. She told me I would lose my central vision completely in the next ten years. (The time table was off.)
The prior year at school we had a blind teacher. I reached out to one of my favorite faculty members asking for his email to ask for advice because he had lost his vision as a kid. This was the first time I faced an unexpected reaction. His response was no because my vision loss might not happen and that he did not think he would want to speak to me. This left me feeling like I had no one to talk to about what was happening.
Not long after, it was recommended I go to a Macula specialist by my Doctor who discovered the problem. The place she recommended would not see someone under 18 because it was so uncommon for a kid to have Macular Degeneration that they did not need to see kids. There are 3 specialists in the US that see kids with my type of Macular Degeneration. One is luckily where I live at the local children’s hospital. We called the hospital and were put on his waiting list, which was 6 months long. After some research and some talking to family friends, we learned that a family friend knew the Doctor and was able to get me on his radar due to the uncommonness of my condition. I was moved up the list and got to see him a month later. 4 days before school started. By now I had severe light sensitivity and little to no depth perception.
One thing I did get from that first appointment was a new outlook on life. This is one of the most important things I have ever learned. I learned that we take basic things for granted that we might lose out of no-where. I found out I was losing my eyesight out of the blue. I made a goal for myself. I would try to do everything that I could to fill my brain and memories with glory that I could remember seeing. I vowed to try things I had been scared to try before. I was terrified of heights and boats. I went out and went off the high dive with a friend over 20 times that summer. I hated large and small boats. I took a large boat 2 times and loved it. I took a small boat out 15 times with friends. We rode waves 20 feet tall in a 10 foot long inflatable boat and loved it. I tried to face my fears so I could remember seeing the things I had done.
When I met him, I was hoping for answers to everything that was happening. I know this was an unrealistic expectation, but I still hoped. After an hour of tests, he did one last test where I heard my least favorite thing from a doctor. “I think the machine is not working.” After another ten minutes of looking in my eye he said, “Your eyes are slightly asymmetrical inside.” He then drew a diagram I will never forget. He drew my left eye, which at the time was still working properly, as a circle with another one inside as the retina then a dot for my macula. Then he drew my right eye. A circle for the eye, then a circle for my retina, then scribbled it in completely to show the liquid for my deteriorating macula.
That is not a comforting thing to see as the diagram of your eye. I asked him if he knew what I had. He said that it looked like Best’s Disease. Best’s Disease is a dominant linked disease that turns the macula into liquid. The other disease that could have been a possibility was Stargardts. He said that he was 99% sure that I had bestrophinopathy. We asked for resources to help prepare me for what was to come. His response affected my family in a large way. He said that he would not give us resources until he confirmed my diagnosis. He said he would see me again in 6 months and would recommend me to the hospital’s genetics department to be tested for the disease.
I left feeling like it was a waste of time and like I had more questions than answers. A big one being neither of my parents had Best’s disease or any eye problems so how did I get a dominant linked disease? (This question got answered 2 months later.) My other big question was what he would request that my current school provide. The answer was the ability to wear sunglasses in class for my light sensitivity, extended test time, all class notes, and choice seating in all my classes.
All resources my family got and learned from prior to my IEP was through the hard work of my mom using her connections and working for hours a day to help me succeed. Without her I would not have the help or information I do.
The 3 days before school started, I went to find the best seat possible for myself in my classrooms and to meet the Learning Resource Center (LRC) Head. As I went class to class, I realized an interesting problem. I could not navigate around the chairs and desks. Meaning I could not navigate around groups of people and objects. That day I walked into 7 chairs, 4 doors, and 3 tables/desks. I realized things I could do simply before were getting harder and harder. Because of my struggle to maneuver around the school wanted to come up with some kind of plan.
Days 1–3 of the school year were challenging but going decent. I developed a method to get through doors and downstairs. I would swat at the door frame until I touched the side of it to get through it and for stairs I would kick my foot to the base of the stairs to get up them and I would slide my heel down each step to get down them. My classmates made remarks about me being weird, but they did not know.
Day 4 is when I started losing hope in that school. On day 4 there was a meeting with the head of the LRC, my family and the head of the Administration Team. In that meeting it was discussed about my navigation skills. In that conversation it was discussed that my friends would help navigate me to my classes to help prevent me from getting hurt. Then it was asked what would happen if I got hurt while I practiced navigating. The response was “Have you looked into schools for the blind?” Implying I should switch schools to a school designed for those who were visually impaired.
My friends were incentivized to help guide me with the promise of service hours. I did not like admitting I needed help because I was embarrassed and felt guilty having someone go out of their way to help me. My guides helped me and navigated me consistently for a week. Then they started forgetting or not coming. Part of that is my fault as I am sure due to my stubborn nature; I tried to do it myself. I started telling them I would do it myself and could do it on my own.
I developed my own method to maneuver. The school did not like that. They started requesting me to use the elevators to get everywhere. I did not trust the elevators, so I did not use them. I was pulled aside later on and told that I needed to start using the elevators at request of the admin team. It became clear as I started to struggle more and more to get around on my own that I needed to be trained to use a cane for the visually impaired to help me navigate.
The day of the homecoming dance I had cane training on campus before the dance. I was given a marshmallow tip cane to practice with. I was taught how to shoreline, listen to the sounds of walls, how to be sighted guided and how to teach people to sighted guide. In the end I navigated the campus blindfolded. I left that day feeling invincible and free. I was finally able to maneuver safely on my own and it was incredible for a couple hours. Then the dance came around.
The dance was my first time out in public with the very identifiable red and white cane for visually impaired people. The responses at the dance included, “You’re faking it!”, “you just want attention!”, “Oh snap”, and laughter. Most people just laughed at me and just watched me try to maneuver around them. A few stood out with what they did though. A group of people from my math class grabbed my cane and took a picture with it next to them with me in the middle for social media. But for that negative encounter that made me feel like an object they used for clout; I also had a good encounter from a group I did not expect. The varsity football team saw as people flooded through a door while I struggled to get through. People were stepping on my cane and making it so I could not get through. They saw this and created a circle around the door so people could not get past so that i could get through without my cane being stepped on. I left that night with three things: a name for my cane (The Oracle), a newfound trust of the varsity football team and the question how I would keep going with being treated like this every day?
At school people still said I was faking it and laughed at me but it escalated to people also making a game out of jumping over my cane and blocking my path to watch me try to maneuver past. School was hard for me to want to go to and my faith in the school continued to go down. But I kept going with the excitement of being invited to a leadership conference in Washington DC. The trip was an experience I will never forget for a couple reasons. One was that we got to visit the black history museum which was a very moving experience. The other reason was how I got treated for having a cane. There are three things that stand out to me. One was the school planned to assign people to be with me at all times. The second is when walking around the city I was left between half a block to a block behind the rest of the group with one other student or no one many times. The third was when a random lady started yelling at me for “faking” my disability.
To preface the story about my third point above let me say I can see shape and color. We were at the Lincoln Memorial at the top of stairs when a lady cut in front of me. I stopped so I did not hit her with my cane. She thanked me and continued on and I thought that was the end of that. (It was not). She came back over and said “How Dare You! How dare you fake being blind! My mother is partially blind!” I politely said that my eyes were liquefying and that I had no depth perception. I had just gotten lucky about not hitting her with my cane when I stopped. This interaction was the first of many times people have wanted an explanation from me about my eye problems.
Come November many things had changed. We had learned that my doctor when referring to bestrophinopathy was not referring to common Best’s disease but Autosomal Recessive Bestrophinopathy (ARB) which is seen in 20 other people in the world. ARB is passed down to someone recessively when both parents carry the gene. They believe this is what I have by some crazy genetic odds but I am currently waiting to be genetically tested at the time of writing to confirm. I could no longer read anything but highly enlarged text, could not read any handwriting, and could not write because I could not see the paper or what I had written. I had been told by faculty of the school that they would not change for me in a conversation about how my computer reader program could not read OneNote and that the reason I was treated the way I was by my classmates was because it was unsettling that I had the condition I did. I was told by her, a school counselor who was meant to be supporting me, that she found me unsettling because of my condition. Most of my teachers had stopped trying to find new ways to teach me and had me just listening to everything and doing the homework I could. I had lost the ability to see faces due to hitting my head at the end of the month.
By December all of my classes were officially pass-fail, and they had stopped trying to teach me the material. I was just sitting in class feeling bored. I was now in the second month of just sitting in class.
I had gotten to go to Paris to see amazing art and architecture as a gift from my parents. They had asked what’s the one place I wanted to see the most. It has been a dream of mine since I was young after seeing Ratatouille. By the end of December, I knew I was switching schools. I had my Individualized Education Plan (IEP) meeting with the public school system where they decided to offer me 5 hours of training in Braille and cane training per month. Due to the minimal offer and some advice from family and friends we found disability service lawyers to help represent me at the meeting. At the meeting we were able to get an additional 30 minutes of mobility training per month and some solid information. In that meeting it was said by my current school that they were struggling to adapt to the speed that my eyesight was deteriorating. The public school system said that they were not able to support someone with eyesight loss at the speed at which mine was going. So by the end of January it was figured out. I would go to a one on one school for my academics. A public school for braille and cane training. And previous school for extracurriculars to still have social interaction.
Three weeks ago, I started braille lessons and cane training. I now know the letters A, B, C, T, and M. Two weeks ago, it was recommended that I look into schools for the blind by the government and my IEP was evaluated and I was given tripled time and resources.. A week ago, I visited the State School for the Blind. I like a philosophy they had a lot. They said that when I walk through those doors the first thing people know about me is me, not that I am blind. I like that a lot. People who get to know me between when my eyesight loss started and now don’t see me beyond that i am blind and stuff about that. Not a single one of those people beside my new teachers know that I love photography, art, cooking, baking, and painting. My favorite place is a bookstore. My favorite food is Pedaheh. I love to discuss books and philosophy. That I love mountain biking. These are things people don’t take an interest in learning.
One thing that always surprises people is that I did not give up. I have days where I want to stop trying and give up and lay down on a fuzzy carpet and pray that it goes away. But I don’t. I get up and keep going everyday. Why? Because I want to help people. I have dreamed of being a doctor for years to help people. I was going to still try to be one even after my eye sight loss. I got invited to a medical conference and called to make sure it was accessible. The response I got was “I legally cannot tell you not to come because you are disabled.” That made me realize if the best doctors in the country don’t want me at their conference then I won’t be able to learn well. So I pivoted to what else I wanted to do. I run three non-profits currently. I want to go into nonprofit work professionally instead. I keep going everyday because I have goals and dreams that will not be stopped by my eyesight loss.
I wrote this for many reasons. To prove to myself I could put it all out there. Because I needed to write it down. Because I want other people to hear my story. Other people see where I was treated wrongly and try to treat others better. I wrote this so people could see how I got through and why I kept going.
