I love summertime for a variety of reasons, but the main reason I love summer is that it stays light outside until almost 10pm here in WA. For a person with night blindness, this makes a big difference. It means I can stay outside playing with my daughter, riding bikes, and walking to/from town for yoga, gelatto, shopping – just to name a few of my favorite activities – well into the evening hours. But I often feel like Cinderella, losing track of time as the clock ticks closer to nightfall. Most of the time I’m very good at planning ahead to make sure that I am in a safe, well-lit place when the sun sets. But at a recent family reunion, the planning wasn’t exactly up to me.
We spent last week in the beautiful smoky mountains of Tennessee, and my fabulous sister-in-law planned all sorts of games/activities for the big event. While my husband was at the nearby pavilion visiting with family, I chased my excited 2 year-old, Cora, all around. Since 2 year-olds just don’t want to sit and chat or play organized games, I accompanied Cora as she explored the new terrain. There were lots of trees, rocks, and uneven paths, so it was challenging enough for me in the light. But I started feeling a panic sweep through my body as the darkness crept in. Cora was running full-speed ahead of me and wouldn’t listen to my “come to mama” pleas. Torrey and his family were off in the distance, listening to music, laughing and visiting. I have to note here that Torrey is an attentive husband and father, and is well aware of the times that I need help. However, his eyes adjust to the dark, so on this particular evening he did not realize how quickly nightfall had come.
It was now almost completely dark outside, and I knew that if I ran fast enough to catch up to Cora, I would likely run into a tree. I started yelling for Torrey and luckily he heard me and came quickly. Although I was relieved that he was able to help Cora and I safely back to the cabin, I also felt angry. I wasn’t angry at him or anyone for that matter, I was just angry at RP for causing night blindness. As usual, I just wanted to be “normal” and stay out socializing with everyone else well into the evening.
I remember feeling this same anger while growing up – ghost in the graveyard was only fun for a short time and then it got too dark to run, and same with Halloween, camping, neighborhood bonfires, etc. Darkness is scary enough as a child, but to a child with RP and who has no training on how to navigate in the dark, the darkness is often terrifying.
I am thankful for the people in my life who have helped me (literally) walk through the darkness – my parents, sisters, husband, and friends. It’s still not easy, but having that reassuring arm to grab onto when darkness comes makes all the difference. Yet I no longer want to rely on others to lead me around in dark and unfamiliar places. I know that there are many people with varying degrees of vision who have taken the steps to become independent and self-sufficient in all different sorts of settings. My goal is to move in that direction, so that at the next family reunion, I can enjoy the festivities regardless of what the clock says.