Nystagmus: What I Would Have Done Differently Growing Up

I spoke to a 31-year-old Financial Samurai reader who has nystagmus and asked him what he would have done differently if he could rewind time. Here is what he said.

What I Would Have Done Different As A Kid With Nystagmus

1. Started with contacts right off the bat. (wore glasses from ages 8 to 11). 

2. Knew more about what it was. The internet was still pretty new when I was a youngster and my parents were trying to figure out what I had going on. Encyclopedias were still very common as I remember. Now that we have more information on it, I'm sure folks with nystagmus can be better informed.

3. I wish I had more patient optometrists growing up. As I mentioned, I'm pretty picky with who I go to see. A lot of them are just too impatient and don't want to take the necessary time during an exam. Growing up, I feel like a lot of them were lazy and gave me a generic prescription instead of really zeroing in on what I needed to optimize my vision. 

** If the doctor does not allow you to rotate or tilt your head during the examination, walk out the door. ** It's completely unrealistic to go through the eye exam with your head perfectly straight. As soon as you leave the office and walk, drive, or live your life, the person with nystagmus is going to back to their null point. That's their functional sweet-spot. To minimize or negate that during an exam is just silly and negligent. It's unrealistic. 

Avoid Fast-Moving Ball Smarts Like Baseball

4. I would have NEVER played baseball. Don't get me wrong, I LOVED the game. I loved the game too much. It was my life. The only reason I stuck around at the high school ranks was because I could run and I had the desire to win and be a team player. Talent-wise, I probably should have never played at the varsity level. Baseball is just WAY too much of an eye game.

There was a cool study I read about how most professional athletes HAVE to have perfect vision in order to perform at the level they perform at. A good portion of them have 20/20 vision without glasses or contacts. In many sports, reaction times are huge. Folks with 20/20 or 20/15 have innately better reaction times than people with 20/25 vision or who need corrective lenses to help them achieve 20/20 vision. Even with contacts my entire life, I never see 20/20. The doctor always told me I'm at 20/25 even with contacts and tilting my head.

So, baseball was possibly the worst choice for me. Having to look at the seams to determine if it's a fastball coming at my head or a curve ball that's going to break over the plate was nearly impossible. Funny fact, I actually got hit by a pitch or two while swinging thinking it was going to break over the plate. Still counts as a strike, haha. So, looking back now….. ANY sport would have been easier for me. ALL SPORTS involve precise acuity with your vision.

Soccer Is Not Bad

However, soccer would have been easier for me because the ball is much bigger, and I don't have to hit it with a bat. I can hit with my actual body. Golf would have been a little easier because at least the ball isn't moving. Tennis would have been fun, but I feel like I would experience the same struggles :-/  I know you're a big tennis guy. But, with the ball moving quickly, I can imagine myself missing the ball entirely or hitting it with the racket inaccurately.

I've played racketball a few times with some friends and have had the same issues. It's a blast, but I am a much better athlete than some of my friends and they destroy me at racketball, haha :-) 

Personally, I probably would have just done track. Save myself from all of the disappointments associated with baseball.

Practiced Driving More First With Parents

5. Get more practice behind the wheel of a car before taking driver's ed. I wish my parents would have taken me to some empty parking lot in the middle of nowhere and let me have experience dealing with a car and nystagmus.

As I mentioned with my particular situation, nervousness exacerbates my condition. If I'm nervous or embarrassed, my eyes tend to move more. So, that whole driver's ed experience was a nightmare. Having some practice or experience going into it could have possibly mitigated some of those fears. But, the surgery definitely helped.

6. Silly, but wouldn't have rode on roller coasters as a kid. Now, this may have NOTHING to do with my eyes. Maybe I just have a weak stomach. But, growing up, my friends and brothers would be able to ride roller coasters for HOURS upon HOURS.

Certain days, they would ride the same one 4-5 times in a row! I would join them, but I would only be able to do it once or twice. After the second time, I was done for the entire day. I was dizzy, headache symptoms, and felt just rotten the rest of the day. It could be how my eyes and brain communicate causing my inner ears to not have the proper information in regards to balancing.

But, I would have just vocalized that my eyes don't get along with roller coasters (even if that wasn't the case). It's also sort of easy for me to get sea-sick out on boats. My eyes bouncing with the boat bouncing isn't always the best recipe. If it's a pontoon boat or a cruise ship, no problem at all. Jet-skis, or little tiny fishing boats sometimes caused me to get a little dizzy is all. 
That's what I would change if I could do it all over again.

But, once again, I'm very fortunate that reading and school was not affected. My reading was always totally fine as long as I could tilt my head just a bit.

Let me know if there are any other questions you think of :-)   Always happy to chat! I will be more prompt in future responses. I loved your guest post on overcoming blindness and achieving financial independence.

Background On Reader's Nystagmus

So neat to be talking with you. I kind of star-struck to be honest :-) I did get two graduate degrees on top of my undergrad. However, I am one of the very fortunate folks with nystagmus in regards to reading.

My reading was never affected. I have a minor head tilt, but I never had issues reading small font. I can actually read very small fonts without having any problems. However, my nearsightedness is getting increasingly worse as I age. If someone has a prescription of -2.5, they see about 20/200, instead of 20/20.

My current prescription is -8 in the left eye and -7 in the right eye. Needless to say, I need glasses or contacts at all times. I never looked into lasik surgeries or even asked because I don't have any interest in it. Plus, it's probably out of the question with the involuntary movements. 

So, because reading wasn't affected, I never struggled with school. I always took my exams fast because I over-studied and knew the material well. I love ALL sports. Watching them…. no problem at all. Playing them, different story. Now that you mention it, I had two big issues playing sports:

1. Running — Playing baseball or backyard football, or something that involves running AND catching was difficult. When you run, your eyes obviously bounce. When you run with nystagmus, it's a double whammy. So, I had to learn at a very young age to run on the balls of my feet in everything (sprinting, jogging, any pace). Running that way helped minimize the bouncing of my head, which helped my eyes a little bit. However, I never received any college scholarship offers or attention with recruiting. My playing days were over in high school. Even hiking in the woods, I can get dizzy sometimes if my head bounces too much. So, I catch myself looking down at my feet more than enjoying the nature to avoid my eyes from moving too much. 

2. Depth perception! It's so funny you mentioned that. When telling you my story, I completely spaced on including it. My depth perception (or lack thereof), is/was only noticeable in playing baseball. Playing baseball was nearly impossible for me as an outfielder. I was fast, but that didn't matter. When you watch an outfielder respond to the ball being hit, they know where to go.

Even in youth baseball, 10 year old kids know whether to rush in or take a step back. Me? I had no clue!  I was embarrassingly horrible at it. No matter how hard I practiced. There were several times in practice, and in games where I would rush in to catch a fly ball, and the dang thing would land 20 feet behind me. Very embarrassing. One day during practice, I gauged a routine fly ball correctly, but misjudged the landing point by an inch or two. Instead of landing in my glove, it nailed me in my cheek bone.

I knew then I was done with the outfield. I finished my high school career playing infield for that sole reason. I couldn't tell if the ball was going to be a home run or a lazy popup until it was too late to respond.

That's really it in regards to depth perception. Driving or walking or everyday life seems unaffected.

Another interesting thing I CANNOT DO is shoot a gun. I have a few friends and family members that go on annual hunting trips and will go to the range from time to time. I'm always turning down their invitations because I cannot shoot a gun. Closing one eye and FOCUSING on a target is nearly impossible. People don't understand that the more I try and focus, the more my eyes shake. So, they try to give me tips and strategies to no avail :-) 

Close this eye, open that eye, it doesn't matter. Heck, I can't even hit things with a SCOPE!  A year or two ago, I went to a shooting range with an ex-military friend. He tried giving me instructions just like everyone before. Shooting a pistol at a 10 yard target, I shot an entire clip without nicking the paper. It's not that I'm careless or reckless or don't want to be good at it, I literally can't do it.

When your eyes move involuntarily, everything else moves (including the target). So, that's a hobby that I absolutely don't care for. It's very similar to the eye exams. The doctor wants you to close one eye and focus on a small letter in the distance. It's hard. But, I don't let it affect me. I just miss out on the hunting trips is all. No loss there :-) 

Peripheral vision is unaffected as long as I have my head tilt/rotation. If you tell me to keep my head straight and look to the left or right, my eyes will move. So, just like I have been doing my entire life, I have to move my head just a bit in order to compensate. But, I don't feel like like I have any peripheral deficit. I always pass the periphery tests with flying colors at the optometry office. 

I will definitely join the ANN and check it out. I'm always interested in finding out more. I actually wanted to be an optometrist or a neuro-ophthalmologist after my surgery. However, I convinced myself not to because if my eyes were moving, how could I help any patients? Probably a good choice.

One more fact that my doctors have told me and I 100% concur with: Contacts are way better than glasses for my nystagmus. Can't speak for everyone, but it's a night and day difference.

As I am writing this email, I am wearing glasses. However, with driving or doing anything outdoors, contacts are exponentially better. The reason why is: (1) the distance from your eyes. You eyes and brain are constantly communicating with another. The closer that corrective lens is to the cornea, the better and easier the communication. (2) The movements! With contacts, my eyes still move. However, the contacts MOVE with my eyes. So, it's less of an issue. I NEVER drive, exercise, or do any yard work with glasses. All of the movement and outside stimuli would cause too much dizziness and head compensation to the point where my neck starts to hurt. With contacts, that's all held to a minimal. Glasses are awesome for reading or watching TV. But, when the head is moving, wearing contacts is absolutely imperative to me.

Let me know if any other questions arise. It's great to talk to someone about it. It would be neat to send this to my family members and close friends. I have never put this on paper for anyone. I really appreciate it (as you can tell with my long responses). 
All the best,