The building where I was supposed to spend the next six months was so dark that I could not see my hand in front of my face. How was I supposed to find my bedroom?
At first I tried to feel my way down the hallway, all the while cursing the ridiculousness of the situation. I soon realized I could hear someone talking, someone who was speaking English! I could tell she was British and involved in a Skype call, but I was desperate for help. I knocked on her door and said, “This is going to sound silly but I cannot see. . . . Can you help me find my bedroom?” The woman angrily asked if I was joking. Surprised, I responded that no, I really could use a hand. The door opened, and the woman stood there … with a white cane and a guide dog. I had asked a blind woman for directions. What were the odds? This is just one of many ridiculous situations I find myself in dealing with Retinitis Pigmentosa, a condition that’s slowly robbing me of my sight.
I come from a family of storytellers. For as long as I can remember, every visit with my father’s relatives was spent sharing and retelling the antics of my father, grandparents and my great-grandmother, for whom I was named. After being brought up surrounded by oral history, it’s not surprising that the main way I have chosen to deal with losing my vision is with wit and story. My family loves to tell the tale of how my great-grandmother delivered the town mail when the mailman came over to socialize and fell asleep on their front porch; I’ll share about the time I was caught knocking on a solid wall of a dark restaurant hallway thinking it to be the bathroom door. Rather than shrink in embarrassment and cry over my fate, more often than not I choose to laugh about it. My friends have come to expect these tales, which they’ve labeled “Rachel stories.”
I learned I had RP, a rare degenerative eye condition, when I was 13. Individuals with RP have little or no night vision and experience decreased peripheral vision over time. Most will be legally blind by age 40. The red flags had been present all along that something was wrong with my eyes. As I child, I was extremely clumsy, constantly tripping over obstacles and struggling in dim or dark settings. Standard childhood experiences such as playing catch in twilight, camping, laser-tag birthday parties, trips to the planetarium and trick or treating were frustrating and even frightening for me. I was labeled a “scaredy-cat” as friends ran from house to house, screaming and giggling, on Halloween night, while I was left to tiptoe along wondering why everyone else was so much braver than me.
But there were funny moments, too. During childhood road trips, my sister and I would bunk together. I often plotted elaborate schemes to jump on her bed in the middle of the night and scare her. My sister, whose vision is unaffected, would wake up to see me kneeling suspiciously on the side of the bed, staring unseeingly into the dark getting ready to pounce but unable to locate her. She would beat me to the punch every time and smack me down with her pillow.
As my vision continued to decline, the material for my stories increased. In 2008, I started my freshman year at the University of Mary Washington. I quickly learned how to navigate my way around the campus in the dark. The routes were more or less predictable even on a cloudy night. But one night, that changed. President Obama, as a presidential candidate, came to speak on campus. I went with thousands of others to hear his speech. His presentation went on late into the night, and it quickly got dark. The huge crowd was disorienting. Their shadows eliminated what little light I could see. I had no idea how to get back to my dorm, or where I even was at that point. I tiptoed slowly along, hoping I was headed in the right direction.
But I was not. After several steps, I realized that the ground felt quite strange underneath my feet, and there were sharp branches brushing my face. Then I felt a strong hand grasp my arm. A deep voice barked “Ma’am. What do you think you are doing?” It was a cop. Somehow I had managed to wander off the path and into a grove of trees behind the podium where the president was speaking. This apparently was considered a “secure area,” and I had been “trespassing.” I received a police escort back to my dorm, a cop on each arm. There is truly never a dull moment in living with low vision.
Retinitis Pigmentosa has impacted aspects of my social life as well. Typical young adult activities like dating can be quite complicated for someone with low vision. I can’t drive anymore, so do I ask my date to pick me up? Should I bring up my disability on a first date, or just wait for it to become apparent? More often than not, it seems to come up on its own. Bars and restaurants are often dimly lit, so the simple task of finding my chair can often seem like an obstacle course. Anything below my chin is outside of my visual field, so I often don’t see handshakes or the menu being handed to me. I also have trouble occasionally recognizing friends if the room is especially crowded or dimly lit. It makes for endless adventures.
I have gone on dates with men who have been overprotective, refusing to let me take any risks in discovering the limitations of my vision. I have also experienced the other extreme of a total lack of understanding, where I have been left to walk alone in dark and unfamiliar territory. I have currently found the happy medium. I am with someone who allows me to take risks but is there to guide on the side and provide support when necessary. I’m the same as any woman. We all just want an arm to hold onto before we face the dark.
There are times when it’s hard to laugh about my situation. This past year brought a particularly difficult adjustment: I now have to use a white cane at night and in the Metro. I worried that the cane would label me as weak or as a victim, and that people would treat me differently. My fears proved true many times. I have had people yell “handicapped lady coming through” when I walk past. I have had complete strangers try and physically push and pull me down escalators, thinking that they are providing assistance. My shins are battered and blue from walking into chairs at school that my students forgot to push in. I will always be the one who knocks down a chair or a glass in a restaurant or bar. The reality is that I am slowly going blind. I often feel like the proverbial Cinderella. The sun sets, and, often, so does my independence. Days are a race to see how many things I can fit in before the sun goes down. But I can’t sit in the dark and cry. I plan to cram every day with adventures. I will keep laughing at the endless ridiculous situations I find myself in. When I wake up in the night and can’t find my way out of my bedroom, I have to see it as hilarious, not humiliating.
Researchers are on the cusp of finding a medical cure to Retinitis Pigmentosa, which would give me, my mother, and countless others back the sight we have lost. It is this fact that truly gives me hope. Until the day that such a cure is found, however, I will face each obstacle with a laugh, a smile and a story.