The light of the sun is blinding to me as I step outside. I make my way down the steps, carefully counting each one in my head. I don’t want to miss one and fall. When my feet hit the sidewalk, I start to walk towards the white car, where my mom waits to take me to work.
You might think I’m a kid or teen heading off to school. I’m not: I’m a 31-year-old woman with a rare genetic eye condition called achromatopsia.
This condition has a lot of features. It causes me to be highly light sensitive, have poor visual acuity, and be partially colorblind. When broken down, one thing this all means is I can’t drive. Which, let’s be honest, is very challenging.
I live in the suburbs of New Jersey, where the main form of transportation is a car. Sure, there’s public transit. This option, though, doesn’t really work for me.
First off, I can’t see what stop I need to get off at. Second, getting to a bus stop or train station typically requires some walking or driving. In the case of walking, I am unable to cross the street because I can’t see the traffic lights change. So public transit isn’t really an option for me.
Balancing achromatopsia and anxiety
When I started college, my mom gave up working as a teacher’s aid to drive me to school. She faced a lot of questions about this decision. Why couldn’t I stay at school, being the main one. Simple answer: anxiety. Just like I was born with achromatopsia, I believe I was born with high anxiety.
When I was a kid, so much made me anxious. Having to eat in for lunch and having no one to sit with; not being able to read the board in class and drawing attention to myself by having to go stand up close to it; sleeping over at a friend’s house and feeling homesick; fire drills and trying to navigate the crowds, sometimes without my sunglasses because they happened too quickly for me to grab them. The list goes on. As I grew up, my anxieties changed, but never went away, and one constant was anxiety surrounding my eye condition. The thought of navigating college on my own, with this eye condition, was too overwhelming at 18 years old.
I had no idea back then who I was. All I knew was if I stayed on campus, my anxiety threatened to overtake me.
Everyday life with achromatopsia
Fast forward to now. I’m heading to work. I’m a children’s librarian at a public library. Work is good. I enjoy being around the kids. I also love reading. It’s a wonderful job helping foster a love of reading in kids.
When I get to work, I walk inside the building and greet my coworkers before heading over to my desk and computer. I turn on the monitor and log into the system. Once logged in, I zoom in on the screen so I can read it better. Usually I need it magnified 300%.
I check my email. I figure out what I have to do for the day. I worry about appearing disabled. I worry a patron will notice my zoomed in screen and point it out rudely. I worry a patron will see me holding a book too closely to read a call number, or notice how much my eyes are squinting because of the bright light.
Words matter (take it from a librarian)
In fairness, my fears are borne of negative experiences I have had of people noticing these things and rudely pointing them out to me. I’ve been lectured by strangers when wearing contacts that I need glasses. I’ve been told I’m holding something too close, and that I look like I’m in pain with how much I’m squinting.
I’ve been embarrassed by strangers, people I don’t know, who feel it’s okay to point out that there is something different about me.
Each incident has scarred me. I’ve worked hard to move past these experiences. Therapy helps. But they still haunt me.
Words matter. Words can cut deep whether you realize it or not. Think before speaking. That is what I would tell anyone who sees someone who they feel looks different. That person knows how they appear. They don’t need some stranger to rudely point out their differences as if those differences are a bad thing, as if their existence is making that stranger uncomfortable.
We should appreciate the things that make us unique. That’s not to say I’ll ever love having achromatopsia. If I could take a magic pill that would give me 20/20 vision, I would. But that’s not reality. So I learn to live with these things, and, ultimately, not see them as negatives.
About the author
Marianne Ayers is a writer and youth services librarian. Her writing has appeared in publications such as Tiny Buddha, Introvert Dear, and the Highly Sensitive Refuge. She lives in New Jersey with her husband and their toy poodle.
You can follow her on Instagram.
