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.
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 29-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 color blind. When broken down, this all means I can’t drive. Which, let's be honest, sucks.
I live in the suburbs of northern 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, not really an option for me.
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.
Fast forward to now. I’m heading to work. I’m a children’s librarian at a public library. Work is okay. I enjoy being around the kids. I also love reading. You could have probably guessed that already. It’s a cool job helping foster a love of reading in kids. But it’s still a job, so there are moments of stress and moments of boredom.
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.
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 or having anxiety. If I could take a magic pill that would give me 20/20 vision or relieve my anxiety, I would. But that’s not reality. So I learn to live with these things, and ultimately not see them as negatives.
Just a short update on how things are going. Almost one month ago, my boyfriend and I moved into our first apartment together. Since then, it’s been a roller coaster of emotions. On the one hand, there’s been excitement at this new chapter of our lives. For me, this is also the first time I’ve moved away from home. I commuted to college, so I never got that experience of being on your own, and the freedom and independence that comes with that. I enjoyed furnishing and decorating the apartment. My boyfriend also has a dog, so I became a dog mom, something that, as an animal lover, I am happy about.
Then there’s the other side of the coin, the side that is grieving the last chapter of my life. I miss my childhood home at times. My bedroom there was like my sanctuary. I would spend hours in it during my free time, writing, painting, doing yoga, and reading. I miss my family dog, who I love very much, and am bonded with. I miss the lack of responsibility in a sense. Although I did chores in my childhood home, like laundry and changing sheets, there’s something different about being responsible for cleaning an entire apartment versus cleaning one bedroom. Having to ensure the fridge is fully stocked, and cook my own meals is new to me. And of course, caring for a dog, feeding her, walking her, etc. is a huge responsibility.
I know these things are all part of growing up. Part of being an adult. But that doesn’t mean there aren’t going to be growing pains. Add on the visual challenges I’ve been facing from my eye condition Achromatopsia and adjusting to a new environment, and it’s understandable that I’ve had moments of stress and feelings of overwhelm. There are moments where I want to go back in time to when things felt comfortable and easier. I had my routine, and I knew my childhood home blindfolded, every step, every nook and cranny. It was my safe space, my home. But then I remind myself all that I have gained.
I am independent and have my own place. I get to spend more time with my boyfriend. I am a responsible pet owner. I’ve broken out of my comfort zone, something, in the past, I’ve worked hard to avoid doing. And you know what? I’m proud of myself. I’ve come far, and the journey hasn’t been smooth or easy, but it’s been incredibly rewarding. So I’m going to keep on this journey and see where it takes me.
I was born with an eye condition called Achromatopsia. Achromatopsia causes a loss of visual acuity, light sensitivity, and partial or total color blindness. It is non-progressive, and currently has no cure, though there are clinical trials with gene therapy taking place. Achromatopsia affects me in a lot of ways, primarily in that I can’t drive. I live in the suburbs where driving is the main form of transportation. Thankfully, I have family, friends, and a boyfriend who help me out with transportation. There’s also apps like Uber I can use. Not being able to drive, though, has affected my mental health throughout my life.
In high school, it was hard watching my peers receive their drivers licenses, and the joy and freedom that elicited. I always wanted to be like everyone else in this way. I wanted to be independent, and have freedom to come and go as I please. The notion of being able to jump in your car whenever you want is a privilege many people take for granted. When that privilege is stripped away, you’re left feeling trapped.
As a kid, I also struggled with accepting my condition. I tried to pretend it wasn’t there. I’ll always remember when I got the chance to get an American Girl doll that looked like me. When my mom asked if we should get the doll glasses, I adamantly said no. I wanted her to look normal, was the thought running through my head.
I didn’t want anything that would mark me as different. In school, I fought against using tools that would help me like magnifiers and large print books, which at the time, were very large books physically as well as the print. School was a struggle because of this, and a lack of accommodation by teachers, as well as a lack of acceptance by peers. In middle school, specifically gym class, I was bullied over my eye condition. Teachers would make assumptions about my academic capabilities based off my disability.
In college, though, things got better. Professors accommodated me no problem. People were more open and accepting. My vision even had rewards like a scholarship. I slowly began to make some steps in accepting my condition. However, it hasn’t been until recently I can say I’ve fully accepted it.
That doesn’t mean it isn’t challenging physically and mentally. I have to make a mindful choice to accept my condition each day. And I do. I want to stop feeling shame about something that is a part of me like my hair color and personality. I hope there is a cure one day, but for now, I’m going to try to live the best life I can with the vision I have. I joined an online support group, and met an inspiring friend with the same condition. I’ve been more open with people in my life about my condition, what it means, and what I need from others to help me navigate the world. My vision doesn’t have to be this curse I was born with. It’s simply a condition I have that I can work with, and live a happy and fulfilling life with.