Shane Haven

“Smile, I Can’t See You”

I was able to see clearly up until the fifth grade. I remember sitting at my desk at school and not being able to see the chalkboard one day. Then the day came when everyone would have there eyes and ears checked, I was worried. Even though I didn’t want to I had to take the test I was scared at the thought of having to wear glasses. I tried as hard as I could to see the letters on the chart but knew I failed the exam. I couldn’t see any of them and the woman administering the test gave me a look of concern. A few days later my mom received a call from my school telling her about my results soon after that she brought me to the optometrist.

I was brought to at least one eye appointment every week for the next five years. This period in my life was one of the toughest times I have ever had to go through. Some of my friends, teachers and even a few of my family thought that I was making my problems up in order to get attention. I remember a teacher denying my request to sit at the front of the room because she said I only wanted to move to be closer to my friends. She left me in the back of the room unsympathetic to the fact I could not see the board or the lessons. At more than a few of my appointments when the doctors could diagnose me with anything the reason I could not see was because I wasn’t “trying” hard enough to read the eye charts.

As a result of everyone’s disbelief I even started to doubt if I had a problem. I asked myself the question “Am I just making this up to get attention?”. I would struggle and try as hard as I could but it didn’t matter my eyes just would not work. I couldn’t understand what was wrong with me and neither could my mom. I’m so thankful to her because she always believed that I had a problem. Even after hearing doctor’s tell her that nothing was wrong with my vision she never doubted me. Without her support I would have never gotten the help I needed.

In the tenth grade my mom told me that we were going into Boston for another eye exam. But by then I’d had enough, I didn’t want to go to anymore tests. I gave my mom a hard time whenever we had to go to an appointment that she had taken the time to make for me. Whenever I had to be excused from school in the middle of a class I would hear people making comments in rude tones like “what’s wrong with her” and other hurtful things and I wished I had an answer to give them.

My appointment was at Mass Eye and Ear in Boston, it is one of the best specialty hospitals in the country. The test lasted about five hours and it wasn’t fun at all. They would put drops into my eyes that would dilate my pupils. It stung my eyes and made my vision even worse than it already was. Then they would shine bright lights into my eyes and have me look into all these strange machines. In the middle of the test I would have to sit blind folded for an half an hour in the waiting room. After that they injected my arm with an iodine needed, it was hard to go through.

After the tests were done I remember sitting in the waiting room for the doctor to come in and give us the results. I thought that the doctor was just going to tell us the same old thing, that everything was fine. The doctor finally came in. He said ” She is legally blind.” It shocked my mom and believe it or not I was relieved. Then I expected him to say that that I needed glasses. Instead he said, ” She has an incurable eye disease called Stargardt’s”. He explained that it was a form of macular dystrophy he told me there is no cure and I will not be able to drive. My mom said nothing I was happy, happy to know that I wasn’t making it up that there really was something wrong with me and that someone finally figured it out. I now could go back to everyone who doubted me and say “I’m not crazy!”

We had taken the train that day and on the ride home I thought about my diagnosis. The only thing really bothering me was not being able to drive. I was sixteen at that time and like most teenagers was excited to get my drivers license. Even though I was sad the thought of finally knowing what was wrong and that my mom and I could stop searching was good news.

The doctor had told my mom to write a letter to all of my teachers telling them to not ask me to read out of the books or off the chalkboard. He said I would just have to sit in class and to try and keep up but I was already used to it. Now that I knew what was wrong I talked to my mom about being tutored at home she agreed. Then I finally started being able to learn in the way I needed to. My text books were the size of a newspaper, about twenty four inches tall and twelve inches wide . I didn’t miss having to see my rude insensitive teachers or struggling to find my classrooms or school buses I was becoming a happier person.

Alot of people now say that they forget that I can’t see well, that I seem normal. I have learned to adapt to my conditions and how to use my eyes the best way I know how. Glasses cannot correct my problem because the center of my vision is gone there is nothing there to correct. My peripheral vision is better for me than looking straight on. I can see blurry shapes but no details for example I would be able to see you walking up to me but I would not know who you are. My vision is sort of like a kids coloring book, very simple with no details. I had thought for years that because of my sight I wouldn’t be able to become a photographer . Then I came across that video and it gave me hope. I was comforted to know that there are others out there who despite their disability became successful. It gave me reassurance that if they can do it so can I. I knew that I would have a harder time than most people but I was determined to pursue my dream. I have to take many pictures to ensure that I have gotten one that is in focus. I found a camera with a big screen and large view finder. I also have a twenty three inch computer screen that allows me to review my pictures. I still sometimes need help seeing which ones are clear. I am better at taking pictures of landscapes and things that don’t move as opposed to people. With people it is hard for me to see their facial expression but people are my favorite things to takes pictures of so I try as hard as I can and I use what I’ve got.

I have decided to not always share my disease when talking about my photography. Because I don’t want my work to be judged based upon the fact that I am legally blind. I would like to be judged for my work alone. But if this article could one day inspire someone else like that video did for me, it would really make my day.

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