Stargardts

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.

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.

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 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.