Living With Nystagmus

I’m 29 years old and my eyes shake. They dance. They quake. They don’t stop. I was born this way. In my life, I know only two other people who have it, one is my own brother. It is involuntary and is fairly rare I’ve been told, so not many people know exactly what it is or what is like so they always have all sorts of questions which I am always eager to answer. If you also have Nystagmus and are reading this then maybe you can relate with me or perhaps I can answer some questions for you.

How it works for me:

  • The further something is from my eyes, the faster they shake.
  • The closer something is from my eyes the slower they shake.
  • When I am tired they shake faster or I can’t stand to keep my eyes open.
  • Alcohol slows my eyes down (or so I have been told).
  • Bright lights agitate my eyes.
  • I can move my eyes further to the right than to the left.
  • Emotions and stress affect the speed my eyes shake.
  • I have a ‘null point’. When I angle my head and eyes a certain way it helps me focus better. My brother shakes his head with his eyes.

I am short-sighted. If I am trying to read something, it needs to be nearly right in front of my face for me to focus on it comfortably. In school, I was that kid sitting at the front of the class all the time. From Grade 1 to University, front row. Reading from the chalkboard would be troublesome too because I read slower than the class. Teachers were always accommodating though and would give me a little bit more time or provide me with physical notes. In the early days, I had friends who would let me copy directly from their notebooks. As a kid, this was super helpful. Nowadays I just ask to be sent the PPT slides or take a picture to look at my own pace. Big prints good, small prints bad.

Everyone always said I would go blind because I sit so close to the TV. I can’t sit back on the couch because it just isn’t comfortable. Trying to focus on the screen from a distance feels annoying. I always need a seat about an arm’s length away. This is especially true for me playing video games. I would be a terrible sniper if I didn’t sit close enough to the screen.

Luckily, I can drive with the help of glasses.  I’ve read that many people with Nystagmus can’t so I consider myself blessed in this sense even though it does get very frustrating because I think I require more focus than the average person. When I begin to feel my eyes get tired I have to find a way to pull over and rest them otherwise I feel too agitated to focus on the road. So even though I was able to get my license, I try to not spend too much time on the road. \

Sports were tricky. Playing basketball, for example, if I shoot the ball, I might see the hoop here, but it’s actually there…almost an inch or more away. Same goes with any ball sports. Never could play as good because of that. Maybe I just didn’t have the talent for that.  For parents who maybe worry about that, I would recommend something like swimming. That is what I did. Doesn’t demand the same sort of vision like for baseball, cricket or basketball.

I never felt bullied or anything about my eyes other than a few jokes which would be pretty funny. I grew up with my eyes like this and I am very comfortable talking about it. People are sometimes worried asking but it isn’t anything shameful to talk about. The weirdest question I ever been asked was if I was on drugs! That one was funny. Making eye contact can be difficult if I am tired or if there is too much light in the room. I try to let people, especially interviewers know so that it wouldn’t affect the interactions. I teach ESL to Korean elementary school kids mostly, so when they notice my eyes they’re always surprised and they come up with funny ways to describe it. Like an eye-quake (play off the word earthquake).

Having Nystagmus to me has been a bit of a disadvantage but I wouldn’t call it a disability. What does bother me the most is that my eyes do get tired very quickly and it interrupts my reading and studying. I  need to take breaks to close my eyes and relax before I can continue. I can still do most anything. It’s my quirk I guess. It’s a cool icebreaker sometimes. Would I fix/change it if I could? Undecided.

Finding meaning through challenges

My job is too easy. Because it’s too easy, I have grown comfortable and contempt. This contempt has rendered the profession nearly meaningless to me. It was once something I would get up and be excited about, but now it is definitely time to move on to a new challenge.

You see, the average person would look at the current deal that I have and hear me complain how it is too easy and respond with something like “life doesn’t have to be hard!”. I think it does.

Nothing great comes out of complacency. Diamonds are only made under pressure. Yadda Yadda. Life should have a level of difficulty to it, otherwise, how are you going to grow? How will you learn anything new? Taking the easy road is lame and boring and honestly a waste of a life.

This applies to other areas and not just to what I currently do. You might be a radio personality, an accountant, consultant, or owner of a coffee shop, at some point, it can become too easy and you will need something new to challenge you. You want to expand further to really see what you are capable of.

I heard this saying once: if you are the smartest person in the room, you are in the wrong room. That stuck with me so much that I purposely sought out people who were way more successful and experienced than me in different areas. Now, I feel like I have mastered life in Korea, and there isn’t much more that I want to pursue here within the limitations of teaching. I’ve done it all. Managed camps, trained teachers, had students from a number of different countries, business marketing trips in China,  contests, events, elementary, high school, university…you name it, I’ve done it.

It’s not that I hate any of it or will never do it again, but it is just time to move on and take everything I have learned elsewhere, maybe back in Dominica where I can really face a challenge and find meaning again.

 

Why you might be failing

Have you ever found yourself not quite excelling at something the way you desire? Are you procrastinating too much? Not hitting the gym like you promised you would, not saving the money that you want, getting started on that business idea you have or achieving the grades that you need? Frustrating isn’t it? It becomes overwhelming and can seem impossible to achieve sometimes…but it’s not. You’re just not in the right mindset.

I reluctantly entered my undergraduate studies in 2007 – man, I’m old. I truly did not want to be there. My parents insisted on it.  At the time, all I wanted to do was be in a band and play music. It’s all I would think about. I rushed through my readings and assignments just so I could hop back on my computer to make beats and record songs and share them with as many people as I could. At a time, when I should have been focusing on immersing myself in my studies, I was more concerned with getting the right plug-ins for my DAW (music programs). University was just something I felt obligated to finish, as soon as the 4 years were up, I could really get to work on my art. I was not in the right mindset.

By having just one foot in my university door, I did not excel as well as I could have with my studies. I made all the excuses. But really, I did not have the right attitude at the time. I graduated from an Honors program, that was an achievement. But in hindsight, I knew I could have accomplished a lot more academically, if I were in the right mindset. 

Moving on, I started working jobs to build up some experience and cash to live life the way I dreamed. Be that struggling artist. During this time, I realized that I needed to work on myself some more, so I went back to college and this time I was a lot more focused. I was still messing around with music, but this time it was secondary. My attitude towards my studies became a lot more serious and this time, I knew exactly what I was going to study and most importantly, why. So that happened, and I met my expectations and I felt great. There was a change in mindset. 

I entered a new phase of my life where I was working a great job making pretty great money. This new experience excited me. I had never had so much disposable income. Surely, I could have saved and paid my student loans.

I got to do all the traveling I wanted and pay all those credit cards and loans. I wasn’t stressing, until the end of each month came around and I was broke stretching out my change and credit cards till the next pay check. For a long time I had lived as a broke student and struggling artist. Now I was a working professional, traveling the world. My attitude now was to just spend as lavishly as I could! I finally had the chance. Save? ha! Sound familiar? I was not in the right mindset. 

Side note: What happened to my music? Still on my mind, But it all of a sudden did not make top 5 on my priority list (more on that later). I guess it was a really good thing my parents forced me to complete university. That hindsight tho…. Don’t worry, I’m about to make my point! 

It took a few years for me to mature to this stage, but I felt like I had finally gotten it all out of my system. The music, the traveling, the ballin’ out. The better part of my 20s was now full of all the stories I wanted. I had done a lot of performing, but I did not feel like music full time was me at this point. Now, all the new (grown up?) things that were sitting in the back of my brain starting coming forward. I started to really think about things like retirement and starting a family. You know, the scary stuff you’ve been trying to avoid. I was ready.

Let me draw out another personal example. I had a wish to have more money in my savings account. For a long time, that’s all it was, a wish. I did not have a plan. AKA, I did not make a budget. Once I made a budget, I had made a plan. By having a plan I was on my way to accomplishing my goal. I checked on it daily, even if nothing had changed. I read more books, I watched YouTube videos, I talked to close friends and family. The idea of entering my 30s with nothing but debt and great Instagram pictures did not appeal to me. I got myself into the right mindset.

What does this mean? It means that I was doing something that I actually wanted to do. I had a clearly defined goal. I knew why I wanted to do it. I made a plan, and executed. How adult of me. *sips whiskey*

Sounds simple right? However, it’s not easy to actively change years of bad habits and attitudes. You can watch all the YouTube videos, get all the advice from other people, but for it to stick, it requires lots of discipline and you need to want it. 

It starts with actually having the want, the need, the hunger, the desire, the passion.

  • You’re not going save money, unless you really want to.
  • You’re not going to lose weight, unless you really want to.
  • You won’t excel academically, unless you really want to.
  • You’re not going to get a job, unless you really want to.
  • You won’t get that promotion, unless you really want it.
  • You’re not gonna finish reading that book, unless you really want to.
  • You won’t get that business up and running, unless you really want it to.
  • You’re not going to be successful, unless you truly want to be.

Once you make the decision that you want something, you gotta take action and get started and make yourself ready. You can accomplish anything if you get in the right mindset.

“But Daniel, I’m still a child. I wanna sip whiskey too! How can I do that?”

I’m glad you asked! You can do that by:

1) Educating yourself:

Take some time to invest in yourself. Read books, listen to podcasts, talk to friends, family, and experts. Whatever it takes to get you where you need to be. Surround yourself with what you want. If you read about saving money, listen to podcasts about saving money, talk to friends about saving money. Then you’re going to start saving money.

2) Grounding yourself.

Ask yourself who you want to be, and why. If you are unsure of your goals or why you’re trying to reach them, then you will fail. Try making a list of everything you want to accomplish. Circle the top 5 things you want to accomplish and make those your top priorities. List the reasons why they are the priorities, in case you forget or need to be reminded.

3) Focusing

A wise man (The Rock) once said ‘FOCUS!”. This guy starts every day at 4am to workout. His day, like many other successful individuals, is planned out. He doesn’t do that because he is unsure of why he’s there or what he wants. He knows! He zones in on his goals. And when he is losing it, he is sure to tell himself and the entire gym it’s time to focus!

Image result for the rock focus gif

I hope this shed some insight into your situation and motivates you to accomplish everything you want. If you got any ideas or if I missed anything, please feel free to let me know in the comments. I would love to hear what you have to say! Now, go get it.