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.

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13 thoughts on “Night Blindness

  1. Love this blog, you guys are such great writers and I’m learning so much about my sissies that I thought I new everything about! Love you!

  2. So well written….. My wife’s (Anne) RP was diagnosed the first year of our marriage. We have now been marriied for 22 years. She has about 13 degrees of visual field and had to stop driving about 13 years ago now. Reading your blog is real helpfiul to me. It is so much of what we experience and I felt such a sense of “yup we experience that too” ….just went walking tonight and noticed the sun had begun to set earlier…keep up your blog and thanks again

    Steve

    • Thanks for your encouraging words, Steve! Just knowing that there are others out there that can relate to our experiences feels comforting. And congratulations to you and Anne on 22 years of marriage – that is no small accomplishment these days!

  3. You are so right, reading something that describes so well what we experience is a great comfort …..just to know others are facing the same thing.

    Thanks again,

    Steve

  4. I just came across your blog…my wife has RP, so I am reading up on how others live with the disease. I saw that you live in Leavenworth…my wife is from Wenatchee and we currently live in Bellingham, WA. You and your sister are doing wonders through your writing by just sharing. Thank you.

    • Thank you Ryan. Just the fact that you are reading up on RP tells me what a fantastic support you are for your wife. Does your wife go back to visit Wenatchee very often? I really enjoy living in this area. Bellingham is beautiful, too! I am so glad to know that this blog is doing what we intended it to.

      • Yes we visit Wenatchee very often. Now I just need my wife to read this blog. I haven’t told her about it yet. She had a hard day the other day with her vision so I am just holding off a bit. We have 4 year old boy and so it is encouraging to read of other parents who have RP and continue to raise their children very well. We have not checked yet if my son has RP. For the moment, he has not complained about his vision.

        • I hope your wife reads the blog soon and that it brings her some comfort to know there are others out there with similar struggles. If she ever wants to meet for coffee when you guys come back for a visit, please have her reach out to me. I would love to connect with other moms with young children and similar RP challenges.

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