“It is hard to say how severe his case is in this early stage of his life, but your son has congenital NYSTAGMUS.” “Nystagmus? Oh yes, it is a rare eye condition that causes involuntary movement of the eyes creating a lack of vision.” “You may want to think twice about having more children Mrs. Rochefort.” “It is extremely unlikely that your son will be able to drive.”
One would agree that hearing all of these things from several different professional eye specialists must be difficult for young parents of their first newborn child. While it seems unfair, confusing, and anything else one might come up with, it was reality for my parents, and many other parents around the world. This reality immediately raises tons of questions. How will my child be able to cope with this disease? What do we do to help? Why my child? It’s so easy to get caught up in all of the discussion that the one diagnosed with Nystagmus will never get to experience things other people will. But while I admit that Nystagmus is another hurdle, that’s all it is. It isn’t something that will keep someone from being a normal kid, student, athlete, employee, boss, parent, or whatever else that individual wants to be. It is easy to let Nystagmus control you, but many people including me, live fruitful and happy lives. All it takes is perseverance.
When I was just a couple months old, I was diagnosed. Of course, I do not remember the original diagnosis, but my parents certainly do. Through all of the sorrow and doubt, they did everything they could to find out exactly what Nystagmus was, and what and who was best for dealing with it. Through much research, they learned as much as possible about the disease, including that it was not curable. They knew that it would cause me problems throughout my life, and it only made them more determined to help. My parents took me to every doctor they felt could offer a meaningful opinion, and eventually decided that they were going to simply let me choose what was easiest for me.
As I got to be the age where I was capable of making everyday decisions for myself, they began to ask questions. “Kyle…can you see this?” or “Is it easier for you to see when you turn your head this way or that way?” Being the small child I was, I offered little to no input to what they asked, as I was more focused on whatever toy car I had chosen to push around the floor. I even earned the nickname “Bam Bam” just like the child from The Flintstones. While dealing with a small child is always difficult, my parents pressed on, continuing with the questions being sprinkled into the short conversations toddlers entertain. Eventually, I began to notice that things were hard to see, like chalkboards at preschool and television screens. I began to answer their questions, making it easier for my parents to assess my vision.
However, they were not able to get me to actually wear my glasses for a while. I swore I knew everything, including the fact that I didn’t need them. Once I started school at All Saints Catholic School in pre-k 4, I realized my parents were right. I won’t say I embraced wearing glasses wholeheartedly as a child, as I was always “forgetting” them. I remember being embarrassed about what my friends and classmates would say. Most of the administration and teaching staff at my school knew about my condition. My parents always talked to my teachers when I was young, but insisted that I not be labeled due to my wishes of not becoming a target for questions and mean kids. While they made sure I got the necessary accommodations, like sitting in the front of classes, they told the school not to make a fuss.
I’ve never worn any bracelets or such articles informing people of my condition, so even at a young age, I was forced to advocate for myself. I know today that this helped me gain confidence and gave me opportunities to learn about my eyes.
Luckily for me, I had a teacher named Mrs. Karen Thomas. My parents had become close with her at All Saints, and asked that I be placed in her 1st grade homeroom. At this time, I was still a bit shy about my glasses, even though I knew they made my vision substantially better and even reduced the tilt of my head. During the first couple weeks of my 1st grade year, I remember always hiding my glasses in my desk and never putting them on. That was the daily routine until Mrs. Thomas told my parents that I wasn’t wearing my glasses. My Mom and Dad told me that night that I had to wear them, or I would be punished. Of course, I cried like every other 6 year old who doesn’t get their way, but I reluctantly agreed.
I came to school the next day with my glasses on only to see all my classmates huddled around Mrs. Thomas. She had decided to wear her glasses on that day instead of her contacts. She knew that I was going to have to wear mine, and she knew how to captivate the minds of small children, so in a way she distracted them. Hardly anyone noticed or said anything to me, and I felt much more comfortable explaining myself too. Once I saw that Mrs. Thomas could do it, it made me believe I could too. I ended up having Mrs. Thomas for homeroom in both 3rd grade and 5th grade as well, and it was not a coincidence.
Mrs. Thomas is just one of the influential people in my life. Other than my parents, there have been several other people who have played a significant role in reinforcing my efforts and supporting me through my struggle and success.
Another great example of this support came from my grandpa. My mom’s dad, Robert Pritzl was someone any child would look up to. He was a hardworking, smart, just all around great person. I remember him coming to many of my sports outings, and making me want to play so much better. He motivated me, simply because all I ever wanted to do was impress him. It wasn’t him pressuring me to do well or anything like that, I just wanted to be like him. He always used to tell me that I could do anything I put my mind to. As cliché as it sounds, he made me believe it. “I can’t wait to come watch you play college football one day, Kyle.”
Yes, parents, grandparents, and all other family members will always tell you that you can do anything, but in all reality the chance that a kid plays college football is slim. But with my grandpa, “Bumpa” as I called him, you could see in his eyes that he didn’t have a doubt in the world that I would get there if I wanted to. That kind of confidence in me inspired me. We had plenty of great memories, like visiting his and my grandma’s house in Lake Placid during holidays, or just random surprises when they showed up for a weekend. I only grew closer to him with all of the trades I made with him for football cards, houses we made out of Legos, or Thanksgiving football games we watched together.
He was diagnosed with pancreatic cancer in the winter of my 5th grade year, and had a stroke a few months after that. He died a painless death in his bed with my mom, her three siblings, and my grandma right by his side. To this day I remember all the things he said to me and cherish every moment I had with him. I still am trying to make him proud, as I know he’s watching over me somewhere.
As a 4 year old, I was interested in sports, particularly football, basketball, and even t-ball. I began playing flag-football the fall going into pre-k. My Mom and Dad suggested that I wear sports goggles, but of course, I refused. I struggled seeing the players around me on the field, but especially the football. Basketball was the same way, dropping passes and missing the basket completely. T-ball was by far the worst, as the ball is so small and moves so fast. I gave up on t-ball and baseball after just the one year, but today I regret it to some degree as I feel like I gave up on it too quickly.
I have loved playing sports ever since I was old enough to play, but football is by far my first choice. I have played basketball throughout middle school and high school because it is fun for me. I don’t take it very seriously, and just play because I enjoy it. Football is a different story.
After playing two years of flag football starting at ages 4 and 5, I decided to make the transition to tackle football. My first year, I was one of the smaller kids, as I was just old enough to play what they called the “mighty might” division. There were kids on my team that were up to 3 years older than I was, but I held my own and stuck with it. In the program I played in, there was a draft for each division, and there were usually 4 teams in each division. I played for the Jupiter Mustangs, and there was a Gold, Maroon, White, and Black team for each division. I was drafted onto the Gold team by the grandfather of one of my best friends from school. He was a tough coach, but in a good way. He taught me a lot of what I know about football today over the 5 years that he was my coach, most of the time through tough love.
I started playing on the offensive line, but I really wanted to play fullback. After my first 2 years, I had become one of the oldest kids on my team, and it would stay that way for the rest of my time with the Jupiter Mustangs. This was due to my August 20th birthday that was just 10 days from the age cutoff to play with the kids from my grade. I also found myself trying to lose a few pounds each year so I could make the weight limit as well. I told coach “Papa” as his grandson Shane and I called him that I really wanted a chance to play fullback. I wasn’t as fast as the other player who played the position, and I obviously couldn’t see as well as him either. I was bigger than him though, and I worked as hard as possible in practice. I took advantage of the carries I got in games, and eventually I took the spot. Wesley, the other player, was a great athlete, so the coaches just moved him to tailback, where he got just as many carries. Ultimately, I had shown the coaches that even with impaired vision, I was going to persevere.
While playing with the Mustangs, I played both ways due to my size, but I was most successful on offense carrying the football. When I hit my biggest growth spurt, I got taller and more coordinated. I was much faster and stronger as well. In 7th grade, I made the decision to go from wearing goggles every once and a while to contact lenses. It took some time to get used to them, but once I got the hang of them, I began to wear them everywhere, not just when I played sports. I remember the first football practice I had them on, every coach told my parents that I seemed like a new kid. To this day, there hasn’t been a practice or game, for any sport, when I didn’t have my contacts in.
Next came high school. In all honesty, I wasn’t worried about explaining myself the first time someone saw my eyes moving back and forth or me looking at something with my head titled sideways. I knew from experience that it wouldn’t cause any trouble for me; growing up having to explain things made it a habit. However, I did know that going to a new school after attending All Saints all the way from Pre-k through 8th grade would present a whole new atmosphere filled with people who knew nothing about Nystagmus. I knew that I would have to tell all of my teachers and any curious classmates all about it, so I embraced it rather than shying away. I took the initiative to tell every one of the teachers on my class schedule. I simply introduced myself, and explained that while it wouldn’t be that big of an issue, I might have some trouble seeing certain things. They each asked me if anything could be done to help, and I have had no issues thus far.
I did have the advantage of being at Oxbridge for basically the entire summer before school started my freshman year. The football team started training on June 8th and practiced five days a week, every week, so on the first day of school I knew plenty of people. There were also a few kids from my middle school that I knew, so it was easy for me to integrate into the student body. I do admit, I was not entirely happy my freshman year, as almost all of my best friends went to a different school. I often told my parents that I wanted to transfer schools, but they wouldn’t let me. I realize how amazing Oxbridge is now and how incredible the opportunity is.
While Oxbridge has not only changed my life for the better, it has opened many new doors for me going forward. I meet with my amazing and fascinating college counselor Mr. Steve Piefer quite frequently. Himself having won countless awards in every criterion possible, and being simply a good person, he basically changed my entire mindset on my future. I went from being a kid who did the bare minimum to get good grades, to going above and beyond on everything. I owe a large part of whatever success I find to him.
I have made huge strides in my life both in the classroom and on the football field. I have gained over 35 pounds since starting in the weight room at school, and I have earned a job with the starting defense last fall. My coach, Doug Socha has also been an inspiration for me by embracing my lack of vision and offering me the same opportunities that every other player gets.
Most, if not all of you, are probably tired of reading about my story and what kind of things have impacted my life. But I believe that some of the things I’ve been through are pretty remarkable, considering the circumstances. I think that people take their vision for granted, and fail to appreciate the little things. While I’m sitting here writing, I realize that I’m lucky I can read. I’m lucky I can drive my car to school every morning. I’m lucky I can do the things I love. I’m lucky I can see, period.
I’ve done enough harping on my accomplishments, but in all honesty the point of it all is to prove that anything is possible. Anything. Again, it sounds extremely cliché, but it’s true. The worst thing someone can do with a diagnosis like mine is to give up hope. Giving up can only make things worse. There are ways to get through it, to make it something that isn’t going to control you. You just have to treat it as something that doesn’t define you, but only as something that makes you stronger.
I have learned that there are always things out there in the world that will make your life easier. It also goes the other way unfortunately, as there will also be plenty of things that seem to only want to torment you. I see Nystagmus as one of the things that are just there to be a burden. There’s no reason why anyone should have to go through it, but it’s there. It is something that just happens, and one has no control over why it happens to them. However, it’s only going to make things harder if you start to ask questions like “Why me?” Instead of focusing on why you were that one person that this burden has been put upon, use that energy to find ways to make life easier.
I’ll be honest; it sucks, a lot. Without my contacts or glasses, I’m lucky if I see how many fingers someone 10 feet away is holding up. But I don’t try and figure out why I have been dealt these cards; I try my very hardest to find the things that will have a positive effect on me. I balance what has made my life harder, with things that make it equally as easy. By this I mean finding ways to eliminate the struggle, and there is a way to win every battle that comes with having Nystagmus.
In my opinion, one of the most valuable assets one can possess is confidence. By “confidence” I do not mean arrogance or thinking too highly of oneself. I mean the strength to stand up for one’s self. This is a solution for many of the problems that will come about at some point or another.
Say you are just starting school at a young age, and in the first class, you are seated at the very back of the classroom. What I have learned is that it really isn’t that hard to raise my hand and simply say that I can’t see. I understand that it may be tough to go out of your comfort zone and explain your situation, especially at a young age. I’ve been there, I know exactly how it feels to have to tell the intimidating teacher that you need to sit in the front of the class. So that is why this confidence doesn’t have to necessarily come from the child directly. Having someone who cares for you, like a parent, stand up for, or with you will make it even less stressful. I still remember one moment that took place a few years back. I was in the 5th grade, and my school took the whole class to a place called “The Little Red Schoolhouse”. It was an old, one-room building that used to be a school sometime in the early stages of American history. Every student dressed up in old clothes, brought their lunch in mason jars and baskets, and was given a different identity that they had to remember. The whole idea was to show us what school was like for kids during the time period. There was a stern looking woman standing inside the door greeting everyone and reading off the seating chart. My assigned name was the last one on the list, which meant my seat was in the very back row of desks. I was terrified, but I said nothing. About an hour later, the teacher began writing on the board. She told the class to copy the sentence she had written 20 times on our miniature chalkboards. I couldn’t make out what it said, so I turned to another child in my class to ask what it said. He was whispering the sentence to me when the teacher slammed her ruler on my desk. She scolded me, and told me that I was not allowed to be talking. Luckily, my classmate had already read off the whole sentence, so I just shook my head and said I was sorry. After the class was over, I approached the woman and, without looking her into the eyes, said I was sorry again, and that I was only talking because I couldn’t see the board. She immediately apologized and told me that she was just being strict to portray how teachers disciplined their students. She insisted that if she had known, she would have moved me to the front of the class without any issues.
In all reality, nobody on Earth is actually out to get you. No teacher intentionally places you at the back of the class knowing you can’t see. They just don’t know any better. All they really want to do is help, it’s their job, but they can’t help if they have no idea what they’re dealing with. Once you realize that they will embrace your condition and do what they can to help accommodate you, it will be much easier to speak up for yourself.
The next thing that I think is critical to life with Nystagmus is a no brainer: patience. It’s pretty obvious that things may get frustrating, but one can’t really understand just how frustrating it is unless they experience it for themselves. Aside from constantly being pestered and interrogated, there are plenty of other issues that will present themselves throughout a lifetime. It can get real tough when you are trying to do something, and can’t quite do it because of how well you can see. You start squinting, turning your head every which way, doing anything you can to try and decipher whatever it is you are looking at, but nothing works. It’s really easy to get upset or mad, or start giving up on things. But that won’t lead to anything but further frustration. It may be a bit harder, or take a bit longer than someone with 20/20 vision, but there are ways to get whatever it is done. Trying to read something that’s a little too far away? Take a picture of it with your phone and then zoom in on it. Yes, it’s inconvenient and you wish it wasn’t necessary, but it will help. It’s little things just like that that will make all the difference. I can’t read most of the road signs I pass until I am up close to them, so by the time I start reading them; I’ve already passed them. I’ve missed plenty of turns, and driven right past several places. I do my best to memorize landmarks and things like that, but sometimes its tough. I’ve had my fair share of outbursts, and gotten upset enough times to come to the conclusion that being patient is the only way to get through it. I understand how hard it is, and it’s totally okay to get upset, but it isn’t going to help you make any progress.
The third thing that I would say is one of the most necessary and valuable assets is people. Not just any people. They have to be the right kind of people. By having people that care about you in your life, you will see that it is much easier to make your way through harder times. Parents, grandparents, brothers, sisters, aunts, uncles, friends, girlfriends, boyfriends, teachers, colleagues, or ANYONE else that will be a positive influence on you can help. They will be there for you when you are in need of anything from reassurance to reading something for you. I believe that the great friends and family that have been a part of my life have helped me in too many ways to count, and have solved countless problems for me. People like Mrs. Thomas, my parents, my amazing girlfriend Olivia, my best friends since birth: The Thompson family, and many more. They are people, who genuinely care about my well being, and they have instilled hope and happiness in my life for many years, and I believe everyone deserves to have those things, no matter the conditions.
A few months ago, my mom said something to me that gave me the idea to try and write something that could help the people that are going through some of the same things I have. What she said to me was this: “You know when you were diagnosed, I knew nothing about Nystagmus. I had never even heard of it. I wish I had had access to something that gave me an idea of what to expect in the future, and that told me everything was going to end up ok. It would have made it so much easier.”
That is what I am attempting to provide. My goal is to try and give whoever reads this text a look at what to expect. I know that it isn’t much, but I really do hope that my story, and the 3 concepts: confidence, patience, and surrounding oneself with people who care about them, can change someone’s life in a positive way.
If anyone has any questions or concerns that they would like to share with me I would be more than happy to help in any way I can. Please feel free to contact me at any time. I will do my best to respond as quickly as possible. My email is firstname.lastname@example.org, and my cell phone number is (561)-352-8207.