Jenelle

Finding Inspiration

My sister sent me this video clip recently, and I found this story very inspiring. Rare disorders such as RP and Ushers don’t get a lot of media coverage, so it was really great to see this story on the Today show thanks to reporter Peter Alexander and his sister Rebecca, who has Ushers syndrom. Ushers is similar to RP in that it is a degenerative disease affecting peripheral and night vision, but it also affects hearing.

When I watched the video, I instantly wanted to be friends with Rebecca – her energy and passion for life made me smile. I particularly liked the emphasis she placed on not letting Ushers define her, which is probably one of my biggest fears about RP. I am afraid that when people find out that I have RP, that is all they are going to think of when they are with me. I don’t want to be put in a box or labeled. That is why I often wait to share that I have RP until I know and trust the person I am telling. As Rebecca points out in this story, we’re often so quick to judge and yet never really know what people are walking around with.

I also appreciate her “seize the day” attitude in which she focuses on the present and doesn’t fear the future. She’s not letting Ushers stop her from anything she wants to accomplish, noting that it might just take her longer or she may need more support along the way. Sometimes I catch myself thinking of all that I want to do in life before I lose more vision when I should be focusing on what I want to do in life regardless of my vision.

Night Blindness

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. Continue reading “Night Blindness” →

Watch Your Step

Hopefully our readers won’t find this post too petty or boring. Not a good start, I know. But sometimes it’s more than just the not driving that really gets to me. RP also interferes with my love of fashion – shoes in particular. While other fashionistas my age are strutting around in sexy high heels, I choose to wear flats or kitten heels most of the time. It’s not that I can’t walk in heels – trust me – I have excellent balance and a pretty high threshold for foot pain. The risks are just too great considering I often miss a curb or trip on a rock in my path, and catching myself from falling is rather challenging in high heels.

This summer I didn’t exactly have a choice, though. I was a bridesmaid in a dear friends wedding, and the gorgeous shoes she chose for us just happened to be 4 inches tall. Nervous doesn’t begin to describe how I felt about sauntering down an aisle in front of 200+ people in these tricky gold heels. Luckily, each bridesmaid had an escort, so I managed the ceremony just fine. But then more nervous butterflies entered my stomach when I learned that we would need to walk through a dimly lit reception as our names were announced in front of the seated dinner guests. I convinced my escort that we should enter the reception skipping instead of walking as our names were announced. I figured it would look less ridiculous if I fell down while skipping vs. walking. Plus, skipping is a lot of fun.

Not only did I successfully skip to my dinner seat, but I also managed to dance the night away in these same heels (with a lot of help from my fantastic husband). I realize the ending to this story might be somewhat disappointing for those of you looking for a good laugh. But don’t worry – I have RP, so there are plenty of funny embarrassing stories to come! Especially if I decide to wear these heels to a dark restaurant….

Use Your Eyes

The shame and embarrassment of not being able to see like everybody else started at an early age. I can remember going up to the chalkboard in first grade and not being able to find where the teacher had set the chalk. The whole class was watching and waiting for me to write on the board, but I could not find the chalk. My face burned with redness as I started moving my hand along the bottom of the chalkboard in hopes of being able to feel where the chalk was. “Use your eyes, ” I heard my teacher saying in a stern voice, which only made me more apprehensive. After fumbling around a bit, I located the chalk and began to write on the board as tears welled up in my eyes. I remember wishing that I could “use my eyes” like all the other kids, but I couldn’t.

I was diagnosed with RP at age 5, so my teacher was well aware of my vision challenges, but yet she still was not comfortable with me using my hands to find a small object (side note – she also mimicked kids who read slow by mockingly telling them “you are reading like a robot”, so perhaps teaching wasn’t her calling in life). But as I’ve grown older, I still find that people are uneasy with me doing things a different way than they do. It makes them uncomfortable to see me feel around for an object that they can spot within seconds, or to see me walking slow in unfamiliar terrain so that I don’t trip on something. The funny thing is that I can do many of the same things that people with normal vision can, but I have to take a slower and often times more awkward-looking approach.

I wish that I could say that I am beyond the point of getting embarrased by my vision, but I still find my face turning red when I drop a coin at the store and can’t see where to pick it up, or when I walk into a dark restaurant and begin slowly shuffling like a turtle. One of the biggest challenges about being partially-sighted is that it is not a term that most people understand. They think you’re either blind or your not – there’s no in-between. And because RP is so rare, it’s often difficult to explain why you don’t see like everyone else. My friends and family are pretty used to the way I “use my eyes” differently than they do, but to the complete stranger standing behind me in the grocery line, I am the freak that can’t find a quarter right in front of her face. Maybe that’s not what they’re thinking, but it sure feels like it from my perspective. I know that I need to not care what strangers think, but this is my journey, and this is where I’m at right now.