We all look back at our lives, pick them apart and look for clues that would have helped us along the way, told us what was up ahead. We discover things about ourselves that may have been present or growing since childhood, and inevitably think about the signs we might have missed.
A few months ago, I was going through some old family photos, and I came across a picture that was taken on a beach in Mexico when I was about three years old. My eyes were squinted against the glare of the sun and I was reaching for my mother’s sunglasses, perched on a rock nearby. I looked desperate to escape the bright sunlight and it is a look I recognize, a feeling I have experienced for years. Growing up in California, my family was always going to the beach. My parents and my siblings loved spending hours in the sun, but I preferred cloudy days. I was called strange, moody and different, but even then, the sun hurt my eyes.
As I got older, I developed a reputation for being clumsy; I was always tripping and stubbing my toes and knocking things over. I couldn’t hit a softball in P.E. class or catch the ball when I was forced into the outfield. I appeared careless, un-athletic, lost in day dreams; I didn’t know it then, but my retinas had begun to die a slow death.
I remember an afternoon when I was learning to drive; I was in the car with my mom, and she began shrieking that I was driving too close to the edge of the road and we were going to go off the cliff. My mom was prone to dramatic expression; there wasn’t really a cliff, just a five-inch drop off the road into the dirt. She thought I wasn’t paying attention, but actually, I had no idea how close I was to the edge. I couldn’t see the side of the road.
Into my 20’s I continued to trip and fall and live up to my reputation as either the clumsy day dreamer, or the newer moniker of drunk girl. I had a friend tell me I was the only 24-year-old she knew who actually fell down and skinned her knees. I missed curbs, crashed into street lamps and collided with pedestrians racing down the Boston sidewalks to escape the cold. I thought perhaps my friends were right and I was drinking too much; I had no idea that the edges of my vision were disappearing.
For years, I nursed the bruises that peppered my skin and laughed along with my friends about my clumsiness. I chastised myself for being careless and inattentive. After my RP diagnosis, I became diligent in searching for current markers of my deteriorating vision. I notice how the glare of the sun gets meaner and how once effortless tasks are becoming more difficult. I feel the light slipping away every time I call out my husband’s name, unable to find him right in front of me. I feel helpless and terrified as the darkness slowly swallows up the contours of the world.