A Short Look into My Situation

When people meet me and find out about my condition, they always say something along the lines of “wow, your so positive about your situation,” or “I can’t believe you are so good at dealing with it.” Yes, I’m humbled by these statements from others, but it hasn’t always been so easy for me. In fact, it really isn’t easy now either, I’ve just learned acceptance.

At this point I am fairly certain you’re wondering what the heck this woman’s condition is. In this article I am going to tell the story of exactly what I have lived my entire life with. I have never told this story publicly before. . . so bare with me 😬

No one knew anything was wrong with me until preschool. You know that screening thing they do right before entering preschool? Yeah, that’s when it was first discovered that I have bad eyesight. Of course, it was thought that I was probably just far sighted or something usual, and that’s what the eye doctors said after my first visit. After this was discovered, things got worse quickly. What no one knew was that little ol’ me was losing my center vision. I began to look off to the right when trying to look directly at something or someone. I remember my dad constantly telling me to look at his eyes. When people finally understood that I was, in fact, not avoiding eye contact but rather was unable to make it things got a little more intense. By second grade I needed to use a magnifying dome to see my school work. Our small town eye doctor finally decided my case was simply out of his hands, so he sent me to the University of Minnesota. 

I’m not going to go into a lot of detail about my time there unless anyone really wants to hear it, but long story short they tentatively diagnosed me with retinitis pigmentosa and started overdosing me on Vitamin The only thing they knew for sure was that I was losing my eyesight. At around fourth grade my parents were fed up with the wishy-washy answers and hours upon hours of testing done way to often, so they decided to take me to the Mayo Clinic. On my FIRST visit with Dr. Iezi, he told my parents he believed I had Stargart’s Disease, which is further progressed by Vitamin A. So basically the U of M put my eyesight in danger, YAY 🥺

Over the years of my secondary education I went from being able to complete my wok with a magnifying glass to needing an iPad to do EVERYTHING. By the time I graduated I could not see the board no matter how close I stood, I needed exams read to me, and I needed a special padlock on my locker since I couldn’t see the darn combination lock. But I survived, right?

Once genetic testing became available to diagnose my condition, my parents jumped right on it. The testing confirmed my doctor’s initial diagnosis almost ten years later. It’s been a true relief knowing exactly what I have, so I can learn about it and prepare myself for my future. 

As simple as this story sounds, it wasn’t. I had a hard time accepting any of the news I got. Why do I have to be the one? Why me? I couldn’t wrap my mind around why God chose to give this relatively rare condition to me out of everyone. It felt like my eyesight ruined a lot of my growing up. How. you might ask? Well to start, no one wants to be friends with the weird girl who holds papers one inch from her face. It was easier for kids to make fun of me than be kind to me (no surprise there!). All the friends I have from my childhood are ones I was friends with previous to my eyes getting too bad. Of course, bullying leads to depression and what not, so long story short, I struggled pretty bad with my emotions. Another HUGE problem caused by my eyesight was the loss of a significant wright of passage that all kids take for granted because they just expect it. When I was twelve I was told I could never get my drivers license. DEVASTATING. I couldn’t play sports (which I loved), I couldn’t go to parties ( because I wasn’t invited), and i couldn’t live up to my full academic potential. I lost so much that most kids take for granted, but it didn’t stop me. 

Through all of this I learned how to accept my situation. Today, I am happy with my life. My condition and experiences because of it have shaped me into who I am today. I’m okay with losing my eyesight because my faith will see me through anything and everything. 2 Corinthians 5:7 says “For we live by Faith, Not by Sight.” This is all I need to hear when I feel down about my vision. It reminds me that all any of us needs is a little faith and anything can be possible!

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