The shame and embarrassment of not being able to see like everybody else started at an early age. I can remember going up to the chalkboard in first grade and not being able to find where the teacher had set the chalk. The whole class was watching and waiting for me to write on the board, but I could not find the chalk. My face burned with redness as I started moving my hand along the bottom of the chalkboard in hopes of being able to feel where the chalk was. “Use your eyes, ” I heard my teacher saying in a stern voice, which only made me more apprehensive. After fumbling around a bit, I located the chalk and began to write on the board as tears welled up in my eyes. I remember wishing that I could “use my eyes” like all the other kids, but I couldn’t.
I was diagnosed with RP at age 5, so my teacher was well aware of my vision challenges, but yet she still was not comfortable with me using my hands to find a small object (side note – she also mimicked kids who read slow by mockingly telling them “you are reading like a robot”, so perhaps teaching wasn’t her calling in life). But as I’ve grown older, I still find that people are uneasy with me doing things a different way than they do. It makes them uncomfortable to see me feel around for an object that they can spot within seconds, or to see me walking slow in unfamiliar terrain so that I don’t trip on something. The funny thing is that I can do many of the same things that people with normal vision can, but I have to take a slower and often times more awkward-looking approach.
I wish that I could say that I am beyond the point of getting embarrased by my vision, but I still find my face turning red when I drop a coin at the store and can’t see where to pick it up, or when I walk into a dark restaurant and begin slowly shuffling like a turtle. One of the biggest challenges about being partially-sighted is that it is not a term that most people understand. They think you’re either blind or your not – there’s no in-between. And because RP is so rare, it’s often difficult to explain why you don’t see like everyone else. My friends and family are pretty used to the way I “use my eyes” differently than they do, but to the complete stranger standing behind me in the grocery line, I am the freak that can’t find a quarter right in front of her face. Maybe that’s not what they’re thinking, but it sure feels like it from my perspective. I know that I need to not care what strangers think, but this is my journey, and this is where I’m at right now.