Arlington, Virginia - I thought I'd planned for everything when I decided to study abroad in Spain.
I had packed clothing, comfortable shoes, my camera, and of course my trusty Spanish-English dictionary. The cab driver dropped me off at my dorm in Bilbao, and I walked in excited for my adventure to begin. My adventure, however, came quickly to a screeching halt. I had forgotten to prepare for something big: the fact that I am legally blind.
The building where I was to spend the next six months was so dark I couldn't see my hand in front of my face. How was I supposed to find my bedroom?
I tried to feel my way down the hallway, all the while cursing the ridiculousness of the situation. I soon realised I could hear someone talking, someone who was speaking English! I could tell she was 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 when dealing with retinitis pigmentosa, a condition that's slowly robbing me of my sight.
I come from a family of storytellers. 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 after the mailman came over to socialise 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 was 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 labelled “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 40. The red flags had been present all along that something was wrong. As a 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 labelled 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.
But there were funny moments, too. In 2008, as a freshman at the University of Mary Washington, I quickly learned to navigate the campus with routes that were more or less predictable even on a cloudy night. But one night, that changed: Presidential candidate Barack Obama came to speak on campus in a presentation that went on late into the night. The huge crowd was disorienting; people's shadows eliminated what little light I could see. I had no idea how to get back to my dorm, or even where I was. I tiptoed slowly along, hoping I was headed in the right direction.
But I wasn't. I realised the ground felt strange underneath my feet, and sharp branches were 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 an officer. I had wandered off the path and into a grove of trees behind the podium where Obama was speaking, apparently considered a secure area. 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.
Typical young adult activities like dating can be quite complicated. I can't drive anymore, so do I ask my date to pick me up? Should I mention my disability on a first date or just wait for it to become apparent? Bars and restaurants are often dimly lighted, so the simple task of finding my chair can often seems like an obstacle course. Anything below my chin is outside my visual field, so I often don't see handshakes or the menu being handed to me. I also have trouble occasionally recognising friends if the room is especially crowded or dim. It makes for endless adventures.
I have gone on dates with men who have been overprotective, refusing to let me take any risks, and those who totally lack understanding, leaving me to walk alone in dark and unfamiliar territory. I've since found a happy medium with someone who allows me to take risks but is there to guide and provide support when necessary. I'm the same as any woman. We all just want an arm to hold on to before we face the dark.
Often, 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 on the Metro subway. 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 pass. I have had complete strangers try to physically push or pull me on escalators, thinking that they are providing assistance. At school, my shins are battered and blue from walking into chairs 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 the sight we have lost back to me, my mother and countless others. 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.
Washington Post
* Rachel Luehrs, an elementary school teacher living in Arlington, Virginia, is the Visionwalk chair for the Foundation Fighting Blindness.