My Story

First Real Experience with an Aid: Camp JumpStart

The summer before middle school started, I did manage to attend an academic-like summer camp, except it was more of a fun “ease your anxiety about middle school” experience than an accelerated and rigorous summer school. Basically at this camp, called Camp JumpStart, students would attend a few periods of classes each day for three weeks to simulate the real middle school experience. And because the goal was to create an identical environment, the school felt the need to…get me an aid.

In my head, I was appalled by the idea, but clearly, I had no choice.

To my aid’s credit, she actually did listen to the request of “please hire someone who won’t be my personal tick”. On the first few days of Camp JumpStart, I literally had no idea who my aid was. Because she didn’t introduce herself as “Kristie’s very own aid”, I thought she was an assistant teacher that just so happened to be in each of three classes. She didn’t follow me to snack time or hover over me when I was at my locker (thank god). At time, I even forgot that I had an aid. If having an aid was like this, I thought, I could manage.

Unfortunately, that didn’t last for long.

By the end of the first week, as we started getting handouts that needed to be enlarged, I finally figured out who my aid was. Also by the end of the first week, my good two shoes façade began to fade, and I began acting more like the unruly child I was. I was used to doing whatever I wanted, even if it meant breaking a few minor rules, as long as the teacher didn’t notice. But when you have a personal aid to watch over you all day, it becomes quite difficult to fly under the radar. One day, we were each given skittles as a part of a science lesson. We were told not to eat them until the end, but of course, being the hungry animal I am, I didn’t listen. When the teacher turned her back on the class I quickly sneaked one, just one into my mouth, without anyone noticing. Well at least, that’s what I thought. A few seconds later, my aid swoop in on me and condemns me for eating the skittle, giving me a nice long speech about following rules and how I would have earned myself a detention if this happened during the school year and crap. I wasn’t angry because she had caught me breaking the rules, because I knew I wasn’t supposed to eat. But what literally drove me insane beyond belief is how just about everyone else in the class also ate a skittle or two as well, and no one else was caught. I’m pretty sure the teacher saw a few some of the not so discrete people, but didn’t really care. Because I had an aid though, I had to follow every single rule.

The next clash with my aid came at the Liberty Science Center, one of the field trip destinations at our time in Camp Jump Start. The campers were split into a few different groups, but with my luck, I had no friends in my group and was bored out of my mind for the first half ot he day. I figure the groups were pretty large and no one would notice if I snuck into he other group instead- I mean, I did that all the time in elementary school no problem. So that’s what I did after lunch. Yeah, not smart; I should have figured that because a had woman whose job was to follow me around on this particular day, she would have freaked out if I went missing.

And freak out she did. She sent the whole group on a half an hour-long hunt for me and when finally found me hanging out in some tunnel, she flipped out. I was dragged outside and was told that I had to stay within her sights at all times. I think its fair to say that after that day, she made me feel like a prisoner and I hated her for that.

I think the reason why I struggled so much with having an aid was because I wasn’t used to following the all the rules. I was always on the more wild side; I never did anything too outrageous, but I did have a tendency to push the boundaries. Personally, I felt it was so unfair that I was forced to be a bored goody two shoes while my friends were having a blast and exploring “dangerous” waters. I literally felt like I had a parent with me in summer school: a place where I should have been allowed to be a kid.

TIP: In hindsight, my Camp JumpStart aid did exactly what her job called for. I think that at the time, I was just not accustomed to being watched so carefully (even at home, my parents are on the chill side). Experiencing an aid for the first time is always going to be an adjustment, and it’s very important that you are patient and communicate with your aid. Now, I personally feel that it is the teacher’s job, not the aid’s, to call out students for bad conduct, like eating a skittle, unless the situation involves a serious issue, such as cheating, stealing, or disappearing (yes, my aid was right to yell at me at the museum). If your aid makes you comfortable in any way, it is crucial that you sit down and bring your issues up to her in a polite manner, as she or he may have no idea that they are doing something that bothers you if you don’t speak up. Remember, a student’s relationship with the aid depends on the efforts of both people and it is ultimately up to you to make the partnership work.

Dilemma

After fifth grade ended, I was in a bit of a dilemma. When my fifth grade report card came out, and I compared my mediocre grades with my friends, I suddenly realized that I wasn’t good at anything anymore. Before I developed my visual impairment, the main edge I had over my peers was my high level of academic achievement. I was also pretty good at sports such as tennis and volleyball. Even regarding the typical recess and gym games, like four square and kickball, I would be among the MVPs. But some things just require vision. But it didn’t matter to me that much if I now sucked at these elementary school games, as long as I was still smart.

But when fifth grade ended, I realized I was no longer one of the geniuses of the grade. I didn’t know what to do. One part of me urged me to ask my parents to enroll me in some academic camps, or to buy me some more math books so I could do what I did in the past and get ahead of the grade. I wanted to be that smart girl again, who already knew everything that was being taught and the one who had no questions and got everything right.

But another part of me was plagued with self doubt. When I would have that sudden burst of motivation to get ahead, a little voice would surface and whisper, “Kristie, what are you thinking? Why are even thinking about being the best when you know you’re just not smart enough anymore?”. Then, I would recede back into my computer games, embarrassed that I even considered being the top again. I was also petrified of revealing to my parents my yearning to get on top; I didn’t want to hear their skeptical comments or another speech of my unrealistic expectations (They never would put me down intentionally, they were just very down to earth people and tended to expect the worst). Of course, I knew that regardless, they would support my desire to work hard if I brought it up, but the last thing I wanted to do is disappointed them.

This went on throughout the summer:the vacillation between wanting to excel and feel smart again, and my fear of failure and embarrassing myself. Eventually, I did the thing that made most sense in this situation, and decided to waste my summer chilling with my friends at the pool and making bead bracelets. Smooth, Kristie, smooth.

TIP: Fear of failure is one’s worst enemy. Never let this hold you back in your pursuit of your dreams. Just think, if you don’t try, there’s no chance that you’ll achieve what you want and you will always be plagued with the “whatif I tried” thought. Even if you try and fail, you will be at peace with yourself in the fact that you gave it everything you had and you can move on in life with no regrets. The fear of embarrassment and the judgement of others is also deadly and has held me back in many walks of life. When working toward something you really want, disregard everyone around you and remember the end goal. When you are unsure of what course of action you should take, take a minute and consider the long run and where you want to be in a few years. When debating whether I should spend my summer working toward future academic success or to just hang out, I should have thought about what I really wanted: a successful school year, or the temporary relief of avoiding potential failure or embarrassment through short term gratification .

High Expectations Gone Low

In the modern day, society has universally placed low expectations on blind people. The stigma that blind people aren’t as capable as their sighted peers or that blind people have too many limitations that hinder the possibility of accomplishing anything significant is all too common. Acquaintances question our ability to perform the simplest tasks, such as pouring a glass of milk. I have even gotten “Wow! You’re legally blind and you’re still in school?!?!” (no, I haven’t dropped out dude, I’m doing quite well actually). When we are to collaborate with our sighted peers on a project, either in school or at work, all too often we are excluded and given the least amount of responsibility due to others’ skepticism of our capacity. When in public, others feel the need to treat us as if we were children, speaking to us differently and doing everything for us, from carrying our bags to letting us cut to the front of the line (which can sometimes be nice, but unnecessary). Once at an airport, a worker brought a wheelchair over to me and offered to push me to my dad. Um, I may not have vision, but yes I do have two functioning legs.

I know people are just being nice and looking out for us. I understand that sighted people feel this way about us because if they themselves were blind, they would have no idea how to survive in such a sighted world. But when everyone believes you’re incapable and inferior, you start to believe it yourself. Especially if even your parents share that feeling.

Before I was diagnosed with Stargardts, my mother held the highest expectations for me. I was raised to be Harvard’s next valedictorian, or someone of that caliber. When I was five, I was the child who stayed in the library completing third grade level Kumon packets while everyone else was on the playground. I was the child who was given books upon books of advanced math books, learning how to multiply double digits before my peers could even do so with single digits. I was the child who was pushed to practice reading and writing Chinese until I was the top of the class in Chinese School every year. My parents wanted and expected me to be on top in everything I did, and I lived up to their expectations. But more important than the high marks and the excellence awards, I felt smart and great about myself.

But when I became visually impaired, I could feel things changed. My parents didn’t outright tell me, but I could sense a shift in their attitude. Within a month of my diagnosis, my mom took me out of Kumon and decided I would no longer continue in Chinese School. Unlike in the past, where my mom would assign me loads of math every day and then scrutinize the work I did each night, my parents told me “Kristie, you don’t need to be the best. As long as your not at the bottom we’re happy”. Initially, I was of course ecstatic that I could go outside and play now with my friends and play in my room without guilt. But after a while, as the academic lead I built slowly waned, I began to question my parents’ sudden change. When I asked, they told me “oh, we just don’t want to tire your eyes out with work and make your vision worse”. This left me feeling powerless, and that because of my eyes, I could no longer better myself. As my peers began surpassing me in skill level and grades, I started doubting my ability for the first time. This was reinforced near the middle of fifth grade when the math supervisor came into our class to pick out outstanding math students for CML. Before my visual impairment, I would have had no question that I would be among the top group, but sitting there that day, I just had an impending feeling of doom that I was not amongst the chosen. And I wasn’t. Literally half of my class was selected for CML but I wasn’t.

I think I went home and puked that day. Watching all my friends file out the door with the math director made me feel more miserable and inferior as ever. I had gone from being the cream of the crop to amongst the bottom half. I no longer felt that I was smart, and this became a self fulfilling prophecy. As fifth grade drew to a close, I saw my grades take a slide from my previous all A+’s (they were still reasonable). My parents claimed they were “so proud” of me for my grades, but deep down, I was positive that if I were still sighted, those marks would have gotten me kicked out of the house.

Just kidding, but you get the point.

TIP: This is mainly geared towards parents: you need to show that you believe in your kid, regardless of what happens. It is unnecessary to treat them any differently after they are diagnosed with an eye condition, as this will allow them to assume that their disability will limit their abilities in more ways than they actually do. A child’s perception of how their visual impairment ill effect them will always stem from their parents’. Just because society has a certain view of blind people, doesn’t mean its true: there are plenty of successful blind people in the world (the one I admire most is professional runner Marla Runyon, who also has Stargardts). Raising a generation of blind youth that can defy the limitations society places starts from a child’s own belief in their capability, which is influenced most by the parents’ attitude.

Having an Aid for the Day

As the last few months of elementary school came about, I heard talk of the idea of getting an aid for me in middle school. When I say heard, I mean my parents tried to have a mature discussion with me about it, but the minute I heard “Kristie” and “aid” in the same sentence, I left the table. I think my parents got the point: NO AID FOR KRISTIE. But they ended up requesting one for next year anyways.

I was very reluctant to comply, but gave in when I realized that I wasn’t interested in rolling around a huge CCTV around the school. I figured I’d also need someone to enlarge my papers and tell me what’s on the board if I didn’t want to drop out of school (I didn’t have a lynx at the time and could barely use the CCTV).

One day in fifth grade, I’m going about my usual routine and working on the math workbook when in comes a lady. She grabs a chair and plops right next to me. Confused, I glance at my teacher for reassurance, and she tells me that since I was getting an aid next year, the school wanted me to experience life with an aid for one day, to see if I really needed one or not. Right off the bat, this threw me off my game, as I found it impossible to concentrate when someone was watching my every move. Her face was only a few inches from mine, and her piercing eyes stared unblinkingly at my workbook, following my every pencil stroke. So obviously, as I was uncomfortable to say the least, I got a problem wrong. And just as I was about to fix it, my day aid slowly moves her eyes to penetrate my face and shoves a finger on the incorrect answer.

I think it’s fair to say that I’ve never wanted a day to go by faster.

The scariest part of this whole aid experience was that she pretty much didn’t say a single word to me the whole entire day. When I asked for an aid that didn’t talk to me, I didn’t mean it literally…

But on the bright side, the experience made me realize that I did need an aid. For the whole year, my fifth grade teacher would enlarge all my papers and make the screen extra large for me. I was lucky enough that in this classroom, the front row was right up against the screen, so I could see the board and take my own notes. But on this particular day, my teacher didn’t give  me special treatment, and I needed my aid to enlarge the handouts and write down the homework that was written in green instead of the usual black. Hence, I realized that in middle school, my teachers wouldn’t go out of their way to accommodate me anymore, and not the classrooms would have an ideal seating arrangement. Coupled with the fact that because we changed classes in middle school, I would need someone to help me carry all my enlarged textbooks and equipment, an aid was something I now knew that was unavoidable for my future.

Did I finally accept that I needed an aid? Yes. But did I like it? No.

TIP: Having me test out how things were like with an aid for one day before getting me one full time was a very smart decision. This gives the student a taste of what having an aid will be like, and allows them to see what works and what doesn’t work. For example, if the student spends a day with an aid that is quieter and leaves the kid alone, and realizes that he or she needs someone who is more involved, this can be taken into consideration when hiring the permanent aid. Thanks to this experience, I now knew that the best aid for me would be one who was a little more social and left me alone when I was doing my work. This is much easier than finding out that a partnership doesn’t work after the aid has been hired, and having to go through the whole process of changing aids. Additionally, I would advise that if a student is reluctant to have an aid as I was, that all adults including parents and teachers refrain from accommodating them   too much, as this will make them realize the importance of getting one.  

You Hate Me Because I’m Blind…?

Although I did handle the last year of elementary school rather maturely and gracefully, I did encounter the first demons that come with being visually impaired. For the first time, I started experiencing occasional moments where waves of shame and inferiority because of my eye condition would envelop me. This was facilitated by some of my not so accepting peers.

Whenever we had silent reading time, and if my book was not available in audio format, my teacher would allow me to choose a friend to read the chapters aloud to me in the hallway. Usually, a good handful of people would excitedly volunteer to help me. I would always choose my best friend and we joked around and gossiped more so than read. However, midway through the year, we transitioned to literature circle books, in which a different book was given to each small group of five. Unfortunately for me, I was stuck in the group that contained all of the “cool and popular kids”, the members of the “in group” everyone longed to be in at some point or another. This was also the group that had no interest in associating themselves with a blind person. When it was time to read, none of them volunteered to help me and instead exchanged glances at each other until my teacher came over and randomly selected one of the girls to take me into the hallway and read. The girl shot me a icy cold lingering glare before unleashing an exasperated sigh and reading in the quickest and most monotone manner she could muster. After she had finished the assigned chapter for class, she started reading the homework chapter- not aloud, but to herself.

That day, I realized that in this world, there are both nice and not so nice people.

Never before had I felt like such a burden that needed to be catered to like a child. Never before had I felt lesser to anyone else because of my visual impairment alone. Never before was I so ashamed of something out of my control

Unfortunately, an even worse incident took place.

There was a boy in my class who was my friend’s friend, but I did not know him very well. Up until the fifth grade, he was always polite to me when we did occasionally cross paths at parties or during recess. Yet after hearing of my visual impairment, I noticed a dramatic shift in his attitude; during recess, he would try to latch on to my friends and try to convince them to play games that blind people obviously would struggle at, like hide and seek. When he was paired up with me to complete a worksheet, he adamantly requested to switch partners and made sure to express his joy and relief when my friend traded places with him. One day, my friend was planning a birthday party in which both he and I were invited. I overheard her tell my other friend that he wouldn’t be coming: the reason being that “he doesn’t want to be there if Kristie is there. He hates her because she’s blind”.

After hearing that, my fury towards that boy erupted. I made sure to express my hate of him loud and clear, and took every opportunity to make a nasty remark to his face or insult him in front of his friends. Even on his yearbook at the end of the year, I wrote “I HATE YOU” in a thick black sharpie (the deed was replicated on his part). I was not the bigger person here, and instead of letting the matter go and focusing on myself, I devoted an excessive amount of energy to getting revenge on him. But now as I look back, under all my rage was a layer of hurt. His comment had sliced a deep wound in my ego and perception of myself, as I increasingly found myself ashamed of having a visual impairment and hiding my blindness when meeting new people. BUt even beneath all that, I sensed a building fear and paranoia of not being liked and accepted by people, for reasons that extend beyond my eye condition, that still plague me today.

Out of all the comments made on my eyes, this was by far the one that lingers in my memory most. The fact that someone hated me not because of my personality or behavior, but because of my eye condition made me feel like for the first time that my blindness defined who I was. I feel that these two incidents really did stick with me throughout my middle school years and heavily contributed to my future denial of my visual impairment and refusal to ask for help.

TIP: Let’s not sugarcoat the fact that there will people in this world that are naïve and unaccepting who will condemn you for your blindness. Unfortunately, reality is that there will be people who will put you down and you can’t control what other people think or do. However, it is up to you to not let these people affect you, and instead use this as motivation to prove people wrong. Although other people’s comments may be upsetting, you need to realize that dwelling on them is not going to get you anywhere and the best thing you can do for yourself is to forget about them. Thinking positive will definitely help with this. For example, instead of holding a grudge against that boy who hated me for being blind so much so that he didn’t want to be at the party as me, I should have focused on the amazing friend I had who still invited me even even if I prevented her other friend from showing up. You should also try to avoid those types of people instead of trying to make them like you or going to extremes to get revenge on them as I did. I cannot stress the importance of surrounding yourself with those who love you most for who you are. Society can be cruel, and although you may not have control over others’ actions, you do have the control to turn negative comments into fuel to push you forward in life and make you stronger.

First Summer Legally Blind

The first summer with my visual impairment went more or less smoothly. I spent a few weeks in China and the rest at summer camp. My eye condition only had two real impacts on me that summer; first, my parents forced me wear sunglasses everywhere I went to protect my eyes from UV ray damage. To make matters worse, my mom bought me these super expensive high end sunglasses from Oakley’s- I think she believed that this would encourage me to feel more confident in sunglasses and hence wear them more, but instead they summoned an adverse effect. Thanks to the Oakley’s I stood out from the already noticed small group of kids wearing the typical $10 sunglasses and felt like that ostentatious rich girl who was trying to act cool and older than I was. Of course my close friends, whom I went to camp with didn’t give them any notice, but I did manage to elicit quite a few undesired stares and unwarranted comments form campers and counselors alike.

The second impact was that my parents switched me from tennis camp to performing arts camp without my consent. Let me retract and say I had, and still do, a huge passion for tennis, and my all time dream was to become the “next Maria Sharapova” (I was 10, okay??). When I heard of this, I was enraged. Their logic was that I would not be able to see the tennis ball and more importantly lose more vision from soaking in the sun for two weeks. My first thought was THEN WHAT ARE THESE SUNGLASSES FOR? But in all seriousness, after my anger subsided a bit, I thought “am I not allowed to be out in the sun anymore? Am I no longer allowed to play outside with my friends, go to the beach, and swim outside?” Luckily, performing arts camp wasn’t too bad. I had friends there and didn’t mind hanging out in an air-conditioned room all day.

After camp, I took a three-week trip to China, which aside from another eye appointment to confirm my condition, was like every other vacation I had in the past when I was sighted. My parents did let loose a bit and allowed me to enjoy outdoor activities such like climbing the Great Wall of China and boating. I came back a few days before school started, excited for the last year of elementary school and expecting everything to be normal.

TIP: It is important to get the care suggested for you or your child’s eye condition to prevent worsening of the vision. I applaud my parents for immediately buying me a pair UV protective sunglasses and pushing me to wear them. However, it is unnecessary to treat your child any differently than if they were sighted. This may even make them feel uncomfortable and abnormal, which may cause them to isolate themselves form their sighted peers. Additionally, if you are a parent, if your child’s vision declines to a point where they can no longer engage in an activity, or if certain activities are no longer safe, make sure to talk with him or her before quitting. Additionally, I suggest replacing the activity with another so your child doesn’t feel that their blindness is preventing them for living life to its fullest. If you are the one losing vision and finding yourself unable to participate in activities you love, don’t give up on activities all together and sit on the couch all day. Find a similar hobby that you can still do. For example, if your vision no longer allows you play football, channel your passion for the sport into something else such as running or wrestling. Remember to never pity yourself on what you can’t do, but instead appreciate and enjoy what you can do. 🙂

Fifth Grade: The WHOLE CLASS Knows

Fifth grade was the first year I entered with my visual impairment. Right off the bat, I received special treatment, as I was given the chance to request three friends to be in my class- and sit next to me for the whole years. It also seemed that every other day, a new piece of equipment would show up at my doorstep, and by the start of fifth grade, I had a dozen magnifiers, a lynx, a brailler and a stash of large print books. I was introduced to a lady who was my designated counselor from the Commision for the Blind, who was apparently going to teach me Braille.

What is happening. Why am I learning Braille. I can still read…

The first day of school rolled around and I felt like every other kid in the classroom. Besides sitting in the front center seat, my new eye condition had no other effect on me. I planned to keep my visual impairment more or less a secret to my new class, with only my close friends and my teacher  knowing. This approach worked well.

For the first day.

On the second day of school, I walk into the classroom and lo and behold, I see none other than my Commision counselor situated in my seat.  With much apprehension I approach her and she spits out words of horror; “Hi Kristie! I’m here to tell your class that you’re blind!!!” As you can imagine, this didn’t go over too well with me and I spent the next half an hour pleading with her in the hallway to leave and trust me to inform people about my condition when I needed help. The last thing I needed was for people to treat me like an outcast, like someone inferior to the rest of the crowd. Although I did inform many of my peers in the fourth grade, “glasses don’t work on me, so I get these cool glass bar magnifiers” is much different than “I’m legally blind so I can’t do things like reading books and drawing pictures that everyone else can!” Eventually, I gave in to a very irritated counselor, as I did not fancy the idea of a phone call home to my parents. I was given the option to tell the class myself, but I declined, as I was too embarrassed and quite frankly afraid, to do so myself. I still remember the agonizing twenty or so minutes where I had to stand in front of the classroom with all my peers staring at me as my counselor bluntly revealed my blindness and limitations to a bunch of people I barely knew. After that day, I felt that everything had changed. Aside from my close friends, many people treated me differently, talking to me like I was younger and acting like I was a sort of alien. My teacher went over the top to accommodate me, treating me as if I were royalty. She gave me excessive attention even in areas that had nothing to do with my eye condition; she would use my name in test questions, always allow me to write on the SmartBoard over other kids, and even give me clues to test questions I was unsure of. At the time, I embraced this new attention (to this day, I am still an attention whore); only later did i put two and two together and realize that this exacerbated the perception my peers had of me.

My social life had changed drastically from the fourth grade. Until then, I had always been a part of a large group, and I was in the so called “center ring” of that group. I was quite popular within that crowd, but in the fifth grade, I felt myself slip away from them. As I was no longer able to participate in many of the groups’ activities such as movies and tennis, I subconsciously drifted toward a smaller crowd. By December of that year, I had established a very close circle with five others, none of which I had known well before my visual impairment. My transition from the large group to the smaller one did not phase me at the time. I was just as happy with the latter as former. Although I no longer was popular and many of my peers did treat me like an outcast, which obviously did bother me, my close friends and family didn’t hold my eye condition against me, and at the time, that was all that mattered to me. Looking back,I feel like the way I handled my visual impairment and my social life in the fifth grade was well beyond my years and unfortunately, much better than I did in the years that were to follow.

TIP: As much as I hated it when my Commision counselor told the class about my eye condition, I feel that in retrospect, it is important that your peers are aware of your eye condition. However, I strongly suggest that you yourself are the one to speak up for yourself and inform others about your visual impairment, as uncomfortable as it is. Parents of blind children should avoid telling others about the visual impairment for them, as they may learn to expect others to understand and help them without having to express their needs on their own. Additionally, it is essential for family and friends of the legally blind to love them for who they are and not allow the eye condition to affect the relationship. You cannot control what the general public think of disabled people, but you can help prevent your visually impaired loved one from feeling inferior or unworthy by providing unconditional love and support, as my family and close friends did for me which dramatically eased my transition into blindness. After all, it is the actions of those closest to you that have the mos timpact.

…More Eye Appointments

Stargardt’s disease…I sat there, dumbfounded at what that even meant. Across the room, my mom looked as if she was about to pass out. “What- what’s that?” my mom stutters, posing the question I too was pondering. “We don’t know much” the doctor replied. “This is rare disease, found only among 1 in every 20,000 people. But it does include macular degeneration of the central vision”. “So does mean glasses won’t work on me?” “No”. “So will I ever be able to see clearly again?”

The doctor sighed. “I don’t know. As of now, there is no cure. But in the future, there will be one to help you see clearly again”. At the time, this was enough for me; as a naive ten year old, I thought to myself that “this works- I ‘ll have bad vision for a little while and then it’ll be fixed with some medicine, and I’ll my perfect vision back without even having to wear glasses”.

Obviously, my parents were more worried, as we stayed in the eye doctor’s office more quite a long time as they discussed the proper course of action for me. I didn’t listen much, as although I was confused on what was happening to me, I didn’t get the sense that it was a big deal. After all, my vision would come back someday right? On the car ride home, my parents didn’t talk much. They just reassured me that everything would end up okay, and that we would deal with anything that came our way, but I could feel the tension and the concern they exuded. I think deep down in me, I knew that something was very wrong, but like my parents, I subconsciously protected myself from the truth and told myself that everything was perfect. Only later, when I came back in touch with real life situations, did reality strike me, and it did hard.

The day, I found myself back at another eye doctor’s office. My parents told me that this was specifically a retina specialist, and they wanted confirmation and advice from more of an expert. Like the previous day, the same procedure ensued, as I was given a series of eye tests, given various prescription lenses that were ineffective, and put through another eye dilation and examination process. The results were run, and the same verdict was delivered- Stargardt’s eye disease. Like the other ophthalmologist, he didn’t have much information to offer about the disease, except that I should wear sunglasses to protect me from the UV rays and avoid Vitamin A rich foods like carrots. He also warned my parents and I that my central vision was likely to deteriorate up to a point and then level off, although no one would know when and how much worse my vision would get. When I heard the confirmation of eye disease, I was genuinely disappointed. I was hoping that a mistake had been yesterday and that I would come home with a pair of glasses and 20/20 vision again. But this feeling only lasted a split second, as I returned to my fantasy that in a few weeks, a cure would come out and I could have clear vision without the title of “four eyes”.

The last few weeks of school went by more or less the same as the last few months. My teacher was informed of my eye condition, and I was given a bar magnifier for my work. The class changed seats again, and I was given a seat in the front of classroom. I felt and was treated no differently than any other kid at the time, and I can say that I truly enjoyed being visually impaired for the first few weeks after my diagnosis. My classmates had no idea what my bar magnifier was, and consequently were all over my cool new toy. I told some of friends the “secret” of my eyes, and before long, I had everyone in the class begging me to let them in on this secret. I bathed in this new attention with great pleasure, as I was hailed for having these “cool eyes that glasses didn’t work on”. No one, including myself, actually understood the full scope of my visual impairment at the time, and hence, no one saw me as disabled or different from them in any way. As I now look back, I could never have expected this to last; it was the last week of school when all anyone did was trade food, draw pictures or play with their Webkinz. It wasn’t until later, when my limitations and my need for special treatment were exposed that everything changed.

TIP: I have to applaud my parents for taking me to multiple eye doctors before fully accepting my diagnosis (that summer, they took to me to another retina specialist in China for a total of three confirmations from experts). Especially with rare eye diseases like mine, it is not hard for eye doctors to misdiagnose a patient. To be safe, first confirm that you or your child actually has the condition you are taking the best course of action for. Additionally, if you are parent whose child has been diagnosed with a visual impairment, I highly suggest you DO NOT shield him or her from the truth and instill a false sense of hope in them, as I had. Eventually, they will find out the hard way and be hit by harsh reality; this will likely be more harmful than if they are aware of the truth from the get-go. Sit down with your child and inform him or her that they have this visual impairment which means their eyesight will (insert progression path of vision for specific condition) which will limit them in (insert impacts) ways while still remaining optimistic about overcoming future struggles and giving them unconditional love.

The Eye Appointment

As the day of my appointment drew near, my dread of getting glasses morphed into excitement at regaining my vision. At this point, my eyes were getting in the way of my daily life and I longed for the day I could see normally again, even if it meant being called “four eyes”. I missed being able to sight read piano notes, run down tennis balls, and absorb the whole action movie experience again.  Not having 20/20 vision, as I quickly realized, was not fun.

Before long, the day finally arrived. I sat in the ophthalmologist chair, with one eye covered and attempting to read the eye chart. I squinted and squirmed, repositioned my head and asked for the lights to be dimmed; nevertheless, I could only correctly identify big “E” in the first row. After a few other unsuccessful tests, I was given a pair of trial frames to wear, and the prescribing process began. I felt myself anticipating my reunion with my vision finally as the ophthalmologist slid the first lens in the glasses frame. I looked at the letters projected on the screen twenty feet in front of me, but didn’t notice a dramatic increase in acuity; if anything the letters on the screen became blurrier. The eye doctor pushes me to focus and try harder, but I just can’t read it (looking back, I think he thought I was lying). He takes the lens out, and replaces it with another lens, and again I stare at the screen with no luck. This repeats for nearly an hour. Each time the doctor puts in a new lens, I close my eyes and think to myself “maybe this is the one,” and imagine the magical moment when I would open my eyes and have my world so clear and perfect again. But this moment never came. After an hour of placing a new lens in, the buildup of hope, and the disappointment of the lack of improvement in my vision, the ophthalmologist left the room with my parents. I stood in the large room, alone with the most recent lenses in the glasses and just stared at the screen trying to force myself to see the letters and trick myself into believing that these lenses were the right ones.

The eye doctor returned, and dilated my eyes. He then proceeded to perform a series of eye tests and examinations on me for another hour. Finally, the doctor left with the information and left my parents and I anxiously awaiting the results. I remember just being so confused and wondering what was going on, and why glasses didn’t work on me, like they did for everyone else. What was wrong with me? I played the last month in my mind, of how I initially found the mere prospect of having glasses despicable. Now, sitting in the waiting room, I longed for nothing but to just find anything that would help me get my vision back, and promised myself that if I was lucky enough to find a pair of glasses that worked for me, I would wear them all the time without a single complaint. After another half an hour of endless worrying, the doctor called my parents and I into another room.  “I’m sorry” he sighed as if it pained him to continue. “But you have Stargardt’s eye disease. You’re visually impaired”.

TIP: At an eye appointment, ALWAYS TELL THE TRUTH. Even if you don’t want to admit to yourself, the eye doctor, or your parents how much your vision has declined, or if you really want to say a certain prescription lens works for you when it doesn’t, tell the ophthalmologist exactly what you can and can’t see. This way, you are able to get the best help you need for your circumstance.  Additionally, if you are a parent or an eye doctor present at these eye tests, do not influence your child by reacting to what they can or can’t see. For example, if a parent exclaims, “WHAT? You can’t even see the third row now on the eye chart now?” the child may feel uncomfortable and try to guess his or her way out of lines he/she cannot actually see. Always create a comfortable environment for the patient during eye exams, in which he or she feels comfortable telling the whole truth about his/her vision.

THE FIRST SIGNS

Up until the fourth grade, I had perfect vision. Just like the rest of peers, I played various sports and instruments, read books, and participated in the typical ten year old’s games such as tag and cards amongst others. I had many friends and excelled at tennis, swimming and piano.

Overall, life was going pretty well.

The first time I noticed that there was something wrong with my vision was on one May day in 2008. My teacher decided it was time to switch seats after the NJASK, and moved me from the front of the classroom to the very last row. Immediately, I realized I could no longer see the writing prompt on the projector, the math problems on the board, or even the time on the clock. Yet all the other kids in my row seemed to have no trouble seeing these things. The first thing that came to mind was “oh no, I need glasses”.

Quickly, I began to struggle; when we were asked to complete the projected math problems on our little white board, I just didn’t hold mine up; when a writing prompt was posted, I pretend to need a tissue so I could walk to the front of classroom and read it while “blowing my nose”; when I was called on to translate a Spanish sentence written on the board, I told my teacher I didn’t know. I missed class notes and I completed the wrong workbook pages for homework. Outside of school, my parents and piano teacher became worried as I began to uncharacteristically read and play the wrong notes. I did inform my friends about my declining vision, but I mostly did this to borrow their notes after class and joke around about how I would look in glasses, something that terrified me. For a month, I refrained from telling my parents to dodge an eye appointment, but after a while, I got frustrated with my vision. I asked my parents to arrange for an eye appointment.

TIP: In hindsight, I should not have dragged informing my parents about my vision loss for a month. By doing so, I was unable to get the help I needed to keep up in school. Additionally, if not looked out for, kids with low vision can potentially end up in dangerous situations, such as crossing the road at wrong times. If you notice any changes in your vision, schedule an eye appointment immediately. Parents, if you notice any signs of vision change in your child, do not hesitate to talk to your child or other people who interact with your children, and set up an eye appointment ASAP.