I’m not a fan of roller coasters, but I often share this hypothetical scenario when I’m asked a question about nystagmus. Imagine that you’re riding a roller coaster in an amusement park, acclimating to the speed as the ride starts off slow and then rapidly intensifies. This is the perfect analogy to describe an eye condition called nystagmus.

Nystagmus is defined as an involuntary eye moment, which means it can’t be controlled or stopped in any way. The eyes can move in different directions, such as in a circular motion, a vertical motion, and a horizontal motion.

A person can be born with the condition, which is called congenital nystagmus, but a person can also acquire the condition later in life.

When I tell someone that I have nystagmus, one of the most common questions I’m asked is,” What is having this condition like?” Rather than explaining the intricacies of my particular case, I respond by describing the roller coaster analogy so that I can give an accurate perspective.

People often react with a sense of empathy. But I remind them that I was born with it and that I can function just as anyone else can — with one limitation — which I will delve into later.  

Do you recall how I mentioned the eyes can move in different directions? Well, my eyes move in all three: circular, vertical, and horizontal. I’ve had the condition since birth, and I was born premature at twenty-four weeks. A full-term pregnancy is thirty-nine weeks, so I was born four months earlier than expected. 

I spent several months in the hospital in the weeks and months that followed. I underwent several eye surgeries, as well as heart surgery, to address complications. I can’t imagine how my parents felt during this time. I can only conjure up a bunch of vocabulary words that simply elicit meaning and context. Words like traumatic, tumultuous, grueling, nerve-wracking, and unsettling cannot accurately convey my parents’ lived experiences. 

Living with nystagmus has its upsides and downsides, and every day is different. Attending college often would exacerbate the movement. Don’t perceive this statement the wrong way – I have no regrets about pursing my passion for TV journalism and earning my broadcasting degree, but it took a lot of grit to get to that point. 

The only strategy that got me through those days was taking frequent breaks to rest my eyes for a few minutes at a time, which is something I credit one of my former high school vision teachers for, as this was something he highly encouraged. It’s the only strategy that works effectively.

I was the student who worked too hard because I wanted to stand out from the rest. Some days, I would arrive home without the energy to do anything else because I simply couldn’t muster enough eye strength. After participating in two or three lectures and using the inaccessible editing software at school for assignments, my eyes were, in a manner of speaking, toast. 

What are some things that you associate with a roller coaster ride? Do you think about jerking forwards, backward, upside down, and spinning around at a rapid rate of speed like Mount Everest in Disney World? This is what nystagmus feels like when my eyes are incredibly fatigued. Hence the roller coaster analogy.

Thankfully, my eyes don’t always start out like this. In fact, when I wake up in the morning, the movement is slow and steady to the point where it can be challenging to detect. But it can be hard to deduce how quickly this will change depending on my activities for the day.

I would get very immersed in my schoolwork due to my drive to succeed. Since I studied broadcast news, most of my assignments felt like I was living a day in the life of a local TV reporter. I would go into the field, conduct interviews, gather footage, write scripts, and edit those elements together to tell a captivating story. Or a package in TV news lingo. I like to say to people that I was a multimedia journalist because I did everything on my own. I loved it, and I wouldn’t trade a second of it. 

Growing up, I experienced immense difficulty just grappling with the nystagmus diagnosis, and I couldn’t fathom why I was dealt with it. I believed what I now realize was a false impression that I was going through one of the most trying times in the world. 

Remember that limitation that I introduced at the beginning of this piece? It is that I can’t get my license because my visual equality isn’t adequate enough. I interpreted the inability to get my license as a void in my life, as my peers in high school were driving around in their own cars, and I felt like I was missing out because I was not. 

In my only twenty-five years on Earth, I have been fortunate to meet many extraordinary people – who have come and gone in my life – who have shaped my outlook by sharing unique perspectives and experiences. Embracing differences is crucial because it makes the world better.

I’ve learned that everyone is battling something behind closed doors or has experienced something that others don’t know anything about. I’ve heard stories from people who I admire who have faced cancer battles, and I’ve realized that the magnitude of a situation like that is incomparable to my nystagmus condition. But people may experience similar feelings and ponder the same questions as I once did.

This eye-opening realization has helped me remain tenacious and approach my circumstances in a new light. Expressing gratitude for what you are fortunate to have in life should not be taken lightly, and leading with kindness, grace, and compassion will propel you forward.