Own the Equinox Day 18: My Grapefruit Handicap
September 9, 2016
by Sophia Boccard
Sophia lives in New York City and has Usher Type 2a. When she is not working as a digital marketer and social media specialist for a boutique hotel in Mazatlan, Mexico, she is working on raising awareness for Usher syndrome while educating people along the way.
I’m not a fan of grapefruits. In fact, I downright hate them. Most people don’t know this about me unless I’m offered a grapefruit, and really, how often does that happen? I’ll tell you, N-E-V-E-R. This is exactly how I feel about Usher syndrome. I’m not a fan of having Usher syndrome, in fact, I downright hate it. Yet, how often do people ask me about Ushers or even know that I have it? None. In fact, unless I go out of my way to educate people about my invisible handicap, most folks don’t realize that I even have one.
I found out I had Usher syndrome in 2012. At the time I was working for a top satellite radio company in New York City. Life was constantly go – go – go. I absolutely loved the hustle and bustle of working in the entertainment industry and, quite frankly, I thrived off of it. However, once I learned about my condition, my life turned upside down. Overnight my vision loss got worse (extreme depression can do that to you). I was struggling at work, I started having panic attacks and I began to be afraid of the outdoors. All things I never had trouble with until I learned about my diagnosis.
Before I left my job there, my boss asked me, “How could you not realize you were going blind? How could you not even notice this progression?” My answer to him and to everyone else out there wondering: “How can anyone know the difference between their own visual reality and someone else’s when there is nothing to compare it to?” My blind spots are exactly that, blind spots. I don’t know that I’m visually missing anything until I bump into it or I’m told that I should be seeing something that I don’t. I can’t compare two visual screenshots in my mind and say, “Oh yeah, I didn’t see that before but now I do with these magical eyes I created in my head.” My invisible handicap was also invisible to me, until it wasn’t.
There are many times that I struggle with explaining my condition. For example, no I don’t need a cane (at the moment); no I’m not deaf; and yes I can see and hear you if you're standing in front of me. Mostly, it just feels like I have to somehow prove to those around me that I can’t see or hear everything. This has been the most difficult for me. Most people who know about my condition usually ask me, “How are your eyes? Are you blind yet?” And honestly, all I want to do is tell them to f*** off for their sheer ignorance. Then I realize that if the tables were turned, I’d probably say the same thing because I wouldn’t know what else to say.
We need to raise awareness, stand united, educate and find some damn cures. I believe through the Own the Equinox campaign we can do that. Nevertheless, I still hate grapefruits. That’ll never change. Something about the acidity and the flavor and well, I really just don’t like them. I leave the fruits alone. Likewise, I’ll always hate having Ushers and it will always be a part of me and who I’ve become. The difference? I won’t leave it alone. I will continue living my life the way I want to the best of my ability and I hope to educate some people along the way.