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.