“Having a Vestibular disorder is the best thing that ever happened to me.”

Age: 17

Diagnosis: Other

Say you have a vestibular disorder.
What if I told you that you can drive a car? How about play a sport?
You probably wouldn’t believe me. But somehow, I do all of these things.
What a lot of people have learned to become content with, I have overcome. This isn’t your typical story that’s written to raise awareness, but a story that I feel can make change for people suffering from Vestibular disorders. My story is constantly changing, as I am constantly growing and improving. I’ll get to live my dreams, and I know you can too. Having a Vestibular disorder is the best thing that ever happened to me.
From the time I was born, I struggled physically. I was extremely sensitive to texture as well. I hit all of my milestones late with the help of my parents, meaning that my pediatrician was already concerned about my development.
My parents have never believed in allowing a diagnosis to define my life, so they persistently worked with me on things like lifting my head, crawling, and walking so that we could avoid deadlines for tests that the doctor wanted to order.
In my family, we have never seen struggle as a bad thing. I am a second generation American, meaning that my relatives worked to earn the life I live today. They left their homelands of Greece and Italy for a better life here, where they worked hours upon hours so that their children could live better lives than they ever lived. They worked despite the fact that they were sick, starving, and didn’t know a word of English. We are living proof that they overcame these challenges. My grandparents passed this mentality on to my parents, and my parents passed it on to me. Despite my setbacks, I have always been expected to figure out how to be a fully functioning member of society, even if I have to go about it differently.
At three years old, it became clear that my struggles were going to require professional help. The same girl who was already fluently bilingual and reading couldn’t walk in a straight line, nor did she have the coordination to do things like drink from a straw. I had low muscle tone in my face, which made it hard for me to control my tongue, even when I was eating. So much of this stemmed from a lack of balance, inability to cross the midline of my body, and frequent brain fog ups, which my family to this day refers to as “Nia’s in a zone”.
Not going to school or falling extremely behind weren’t options, so my parents signed me up for physical, occupational, and speech therapies.
In physical therapy, I worked on basic tasks like learning how to properly use the stairs, walk in a straight line, and simply balance. Remember my first physical therapist, because she becomes important later.
In speech therapy, I learned how to somewhat control my tounge and worked on overcoming texture sensitivity.
When I was six years old, I moved to a new therapy center, where I started working with an occupational therapist that had a lot more experience than my past therapists. She insisted that all of my setbacks had to be related, and suggested to my parents that they allow her to test me for different disorders. Testing had been suggested in the past, but at this point, my struggles were becoming more and more evident as I had started elementary school. They agreed to the testing.
Over the next few weeks at therapy, I had an extensive evaluation. I was asked to perform many tasks, many having to do with sorting objects, balancing in different positions, and running. All of these were extremely difficult for me, even though they should have been very easy. The test included much more than this, but being that it happened when I was so young, I don’t remember all of it.
After the evaluation, my therapist discovered that I had a Vestibular disorder, more specifically a problem with Vestibular processing. This disorder occurs when the cord that connects the inner ears is crushed or crumbled, and cannot transmit signals quickly. In a normal brain, this signal zooms through, but in mine, it moves through slowly in small sparks.
Upon learning this, my parents decided not to tell me that I had any form of disorder at all. They didn’t want me to ever use it as an excuse for anything because everyone has a struggle, and struggles are a normal part of life. However, many aspects of my life were not normal. I couldn’t use the playground equipment at school because I was uncoordinated, so my mom and I spent hours at parks practicing so that I could enjoy recess with my friends. Even though the equipment often made me dizzy, I didn’t care because I had worked so hard to use it.
I also struggled a lot in Math because I often became overwhelmed looking at large amounts of numbers. Not to mention, I frequently experienced “zones” or brain fog during the school day. The other kids noticed this, but I would often tell them that I had ADD and Dyslexia, not wanting to explain the depth of the situation.
At age eight, I started complaining to my mom about how I felt babied at therapy. I was the oldest one there, and I was learning tasks that most people learn as toddlers. That’s when she signed me up for Greek Dancing at my church. Although I wasn’t in sync with anyone on the stage, my teachers were very understanding, especially because I loved dancing so much.
Throughout my elementary years, I progressed slowly. However, I continued to struggle, and by fifth grade, I was over therapy. I still had so much work to do, but I disliked being there so much that I would feel sick on the way. I had been tired of it for five years, so my parents decided to take me out, even though my therapist had been suggesting that I come even more.
At that point, my mom knew that she had to act quickly or I would start to regress. Luckily, God presented a solution when she heard about Crossfit. She was already a Crossfitter, but there was another side to the sport than what most people know it for. When most people think of Crossfit, they think of heavy weights, no air condition, and ripped athletes. However, Crossfit is also full of functional movements that have brought people with disorders and illnesses such as rheumatoid arthritis and spina bifida to live normal, fully functioning lives. My mom, knowing someone who coached in this type of Crossfit, arranged for me to start.
My first day in Coach Stephanie’s garage was difficult. She first asked me to do a push up, a sit up, and a squat. I couldn’t do any of those things, nor could I run in a straight line. Coach Stephanie now tells me of how shocked she was at the extent of my lack of coordination. However, that day, she didn’t say a word about that. All she told me was that I was going to get strong, and that I could do anything I put my mind to. My mom didn’t even tell Coach Stephanie what was wrong with me until much later, but she was still willing to work with me.
I always worked with Coach Stephanie one on one. My weekly crossfit routine consisted of a workout made up of plate jumps, functional movements, and weightless Olympic lifting. Afterwards I would do “strength”, which means that I would learn how to do push ups, sit ups, and squats. At first, I had to squat to a chair and do push ups and sit ups with support pads, but all of these things were eventually taken away. I would also work on things like crossing the midline, walking, and running.
Within a year, I had started lifting weights, running, and doing several other movements. Crossfit changed my life completely. I could walk long distances, and I was much more coordinated. My schoolwork became easier, which sounds unrelated, but the functional movement of Crossfit connected dots for me that I never thought would be connected. To say that Crossfit impacted my day 24/7 would be an understatement.
At the beginning of seventh grade, I decided that I wanted to run cross country. I had gone from someone who couldn’t do a sit up to someone who could run four miles in one year.
I also transferred out of Coach Stephanie’s garage and into her class full of teenage athletes at the Crossfit she owned. On top of that, I became a good dancer that actually fit in onstage.
At one of my cross country meets, after finishing the race in 11th place, I noticed my mom talking to a familiar woman. I found out that she was the physical therapist that taught me how to walk up stairs. She was amazed, and couldn’t believe that I was running in a race. In fact, I had beat her daughter.
That year, my mom finally told me what I had. She wanted me to succeed before I knew, and when I found out, it honestly didn’t affect me. What happened to me wasn’t an accident. God had a plan for me, and this has only made me so much stronger. People always ask me how I’m so confident, and the answer is because I’ve worked hard for what I have.
Right now, I am a Junior in high school. While I no longer run cross country, I still crossfit. I am also an adult Greek dancer, and I’m currently preparing for a big show. I never in a million years thought I would be athletic or even coordinated! I’m also on track to get my driver’s licence in December. Even though I’m almost two years late on that, I’m still super excited. Many people like me don’t drive, and even though I’ve taken longer than most because I’ve had to learn in a different way, I am confident that I can be a good driver.
I’m also planning on going to college and becoming a professor of Theology. For as long as I can remember, that is what I’ve wanted to do with my life. What I described would not be at all possible without the One who gave me the strength to overcome my challenges.
If you’re suffering from a Vestibular disorder, I understand you. Although I am able to participate in normal activities, I still experience my Vestibular symptoms. When I eat too much sugar, get stressed, or don’t get enough sleep, my coordination goes away and my vision fogs up. I still have brain fog, migraines, and at times, a crazy walk. I will also have to spend the rest of my life keeping my mind and body in shape to prevent gradual or sudden regression. To be honest, though, these things don’t bother me. The disorder I have is permanent, and as of right now, there is no way that it can be cured. However, I have gotten to a point where my symptoms no longer hinder me from living a normal life.
Just like my parents taught me, I don’t allow these things to keep me from being me. The best piece of advice I can give you is don’t be content with being left out of the normal parts of life. You CAN drive, and work, and balance. It may seem so impossible, but you can do it.
Don’t wait around for the perfect doctor, or the perfect cure, or new technology that may never come about. While these things would be AWESOME, why wait? Though advancements in technology and medicine may come to be, there’s a chance that they may not. Also, sooner is better than later! If you are suffering from a Vestibular disorder, you are strong! You’ve already endured so much, proving that you have the strength to overcome your challenges. If I, a seventeen year old with no memory of a life before Vestibular issues, can do it, so can you.
Things like walking and driving won’t feel the same as they did before, because your brain works differently than it did before. Things can be different, but that does not make them any worse. I can drive, even if I don’t see the road the same way everyone else does. What I see is not wrong, but different.
I challenge you to find a Crossfit coach or a personal trainer that is willing to work with you. This is different from doing yoga or chair exercises. Those are nothing but great for you, but you need someone who is going to challenge you and teach you to do things that you can’t yet do. However, I understand that this may not be accessible to everyone. If this is the case for you, I’ve got your back. I recently started an Instagram account, called @beatingvestibular, where I talk about pieces of my journey and explain how to do different functional movements in a way that makes sense to us. This does not replace working with someone experienced, but it’s a great way to learn basic movements and tips.
My mom didn’t tell me (or anyone else) what I had until seventh grade because she knew lots of people, including me, might not have any hope knowing how this disorder typically affects people. Luckily, my parents didn’t let a diagnosis define me. Just like they believed in me, I believe in you.