August 19th, 2023

Last Sunday I got on a train to meet a woman I’d met in an online support group for Achromatopsia, the eye condition I was born with. Growing up, I knew the statistic for those with my eye condition: 1 in 33,000. So I never expected to meet someone, in person, with the same eye condition. Not only that, but someone who is around the same age, who lives just a train ride away. 

When we first started talking via Facebook messenger, I instantly felt a connection. Finally someone who understood what it was like to have Achromatopsia! We shared stories of the struggles of Achromatopsia such as light sensitivity issues, and how many people “just don’t get it.” People often forget I have an eye condition unless they see me outside being blinded by the sun or squinting to read small print. On the one hand, this is nice. It means people don’t define me by my eye condition, that that isn’t the first thing they think of when they are with me. On the other hand, it can leave you feeling isolated and on your own in this condition when you have no one to relate to. 

Having someone to relate to is such a powerful thing. Knowing that there is someone else out there who understands what you are going through can make things so much easier. So when we finally nailed down plans to meet in person, I couldn’t have been more excited. And the experience did not disappoint. 

Upon meeting at the train station, I immediately felt at ease. I knew I didn’t have to try to mask my disability from this woman. I could authentically be myself. She understood, and could relate. Even the smallest thing such as seeing her hold her phone close to her face to text resonated with me because I’d never seen anyone do that outside of myself. And she did it so casually and comfortably. 

Her confidence inspires me. She isn’t ashamed of her eye condition. She approaches life with a “this is me, take it or leave it” attitude. I am working to emulate that attitude. Because the truth is that this is me, and there’s nothing wrong with that. I’m tired of living in a world that I feel I need to conform to, where I have to pretend I can see things I can’t just so people don’t feel uncomfortable. I want to live in a world where I am honest about what I can and can’t see, and not ashamed of it. I’ve lived in shame for too long over this. It’s time to let go and just be who I am.