My Nystagmus Story

When I was six years old I marched to the front of my first-grade classroom and proudly handed the teacher my golden ticket: a three day absence note. I’ve only been to South Korea once, and I loved it. Being excused from school to travel to the other side of the world was like a dream come true. What I didn’t realize was that, for the next three days, I wasn’t going to see my grandparents or snack on some delicious street food. Instead, my mom and I were headed to one of South Korea’s best ophthalmology clinics seeking the answers to our questions about congenital cataracts, nystagmus, and the impact they would have on my future. It was here where we were told there is a negative correlation between infantile nystagmus nystagmus and literacy skills (although more recent studies have disputed this). 

In the span of three days, my life turned upside down. I was always aware of how the funky glasses I wore made me look weird, how I didn’t seem to read as fast as my other classmates, and how I always needed to sit up at the front of the classroom. However, despite these discouragements, I always believed that they were merely obstacles I could eventually overcome, and this mindset directly influenced my day to day life. And so there we were, on the opposite side of the world, learning that my nystagmus and congenital cataracts meant that developing advanced reading and writing proficiency would require extra work. After hearing this, my parents did everything they could to encourage reading.

Starting in elementary school, I started seeing an English tutor who would help me navigate through literature and develop stronger vocabulary skills. I enjoyed reading historical fiction and bibliographies, especially when I was in middle and high school. In fact, some of my favorite books I read were Escape from Camp 14, Unbroken, and How Starbucks Saved My Life. Although reading books definitely helped me stay on track, to this day, I believe that the joy I found in playing the clarinet was what really propelled me in the right direction. I started playing the clarinet when I was eleven years old. One immediate challenge was the effect nystagmus had on me while I was reading sheet music. It quickly became apparent that I would struggle to distinguish notes on a page. For example, A and C on the treble clef looked exactly the same to me half of the time. They were both notes without a dash going through them. Similarly, B and D were both notes with dashes going through them. Though the notes weren’t obvious to distinguish when I was reading them, it was definitely obvious when I was playing them. How was I supposed to tell them apart? And so, not even a month after playing the clarinet, my private lesson teacher was printing copies with large print just so I could read the notes clearly. 

The challenge never went away, but hours and hours of practicing and learning through trial and error allowed me to get better and better. Slowly but surely, I was able to distinguish all of the notes from each other on regular sized print because I was seeing them over and over again. Of course, the order of the notes were always different with every piece, but all the notes were on the same clef and the clef always had five lines and four spaces. As I continued playing my instrument throughout high school, I was eventually competing at the All-State level. That year, I ended up placing 27th in Texas.

2020 was a special year for all of us. It was the year where “Parasite” won Best Picture, there were peaceful protests on a global scale, and the COVID-19 pandemic forced all of us to make several sacrifices for the safety of others. For me, it was also the year of my graduation. Graduation not only from high school with the rest of my class but also from the eighteen years I spent without intraocular lenses from my cataracts. I still remember it like it was yesterday. It was March, and I went through a life-changing surgery. The quality of everything I could see dramatically improved to a degree that I wasn’t expecting, and, with me entering my first year of college in a numerically symbolic year, I felt like I was a completely different person. 

Currently, I’m a biochemistry major at Texas A&M University in College Station, Texas. So far, my favorite subject is chemistry because I love learning about the connection between subatomic particles and intermolecular forces to the specific reaction mechanisms that happen because of them. Outside of school, some of my hobbies include watching the English Premier League and the UFC. When I’m not watching football or combat sports, I can be found volunteering in the emergency department, working an EMT shift, or practicing Spanish with my Spanish professor. Although my eyes still oscillate, nystagmus definitely hasn’t stopped me from doing the things I enjoy. Early on, I accepted that my nystagmus probably wasn’t going away; however, all that meant was that it was a part of my identity. In fact, even today, I can’t seem to describe myself without mentioning nystagmus or my past experiences with congenital cataracts, and I truly believe that nothing will ever change that

by Chanwoo Kim