The Young Undiagnosed Me

Now, looking back, I can identify several times where I would trip or miss something because of my RP. I just didn’t know it was abnormal or because of a condition, I thought that is how everybody was. How do you know you’re different or what you do or see is different unless you’re given something to compare to?

It was quite dark one night and I was getting out of the car to go into a church member’s house for a Bible study. I didn’t see the curb and tripped over it. It was a bad fall, ripped through my jeans, cut open my knee, and blood started gushing. Luckily, the person who owned the house took really good care of me. The next day, I got stitches. Looking back on this, I totally can see how this was RP in action, I just didn’t know it. This is probably the incident that is engrained in my brain the most.

I always missed papers being passed around the class. I’m now super aware when papers are being passed around and it drives me a little bit crazy but I got tired of people thinking  was dumb or not paying attention, just for not seeing that they were passing me papers from behind. I miss them when they are passing them from in front too, but mostly from behind. Again, looking back on it, I can totally see that this was RP, I just didn’t know it.

Even after I got the official label of “Retinitis Pigmentosa,” I still didn’t really understand how I was different than others. I understood that I sucked at catching balls or other objects when they were thrown at me and I knew I got hit in the head a lot in sports, but I just thought that was me being clumsy. I have broken a few bones since then because of RP. My worst fall was probably when I tore my miniscus in my knee in Tulsa one year. I didn’t see a big hole and then an ice patch and I totally fell and then went sliding. I was down on that ice for a looong time because nobody wanted to move me until paramedics got there.

I’m not sure I would have done anything that different if I knew I had RP, but I believe it would have saved me a lot of frustration and heartache. I would have known why I didn’t see something and would also be able to explain it to others. “Knowledge is power.” (so true!)

If you all have any questions, please feel free to let me know!: ) I’d also love to hear your stories. Please leave them in the comments. Thanks!


Published by

Jessica N and Makiko

Jessica is a proud Texan. She graduated in 2014 with her Master of Science in Rehabilitation Counseling and is now employed. She is visually impaired and has a retinal disease, Retinitis Pigmentosa. Originally Jessica started blogging about everything from being diagnosed with the disease to where she is now, almost 9 years later. Then, Jessica went to Guide Dogs for the Blind and was blessed with Makiko, her new guide dog. Now, her blog "The Way Eye See The World" is about everything related to visual impairments, including guide dogs.

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