“What You Don’t See” by Rosie Troyer

If you were to see me in the grocery store or at the park, you would probably never guess that I am sick or that I am disabled. You would probably see just a teenage girl. Today, I hope to open your eyes to see what you would otherwise never know about myself or countless others who suffer from invisible and dynamic disabilities and illnesses. I also want to recognize all the people who have stood by me every step of the way.

When I was a little kid, before my symptoms really developed, my mom could already tell I was a little different from my older sister. I often vomited without explanation and I got tired easily. I complained of headaches from about age two, describing them as “rainbow headaches”, which I later realized were migraines with aura. In elementary school, I frequented the nurse's office, and she very quickly learned about my vomiting issue. Before long, she didn't send me home every time I vomited, instead she let me lie down until I felt better. Thanks to her, I missed a lot less school.

In kindergarten I failed the school vision screening. We discovered that my eyesight was 20/400 in my left eye and poor in my right eye as well. My family thought I was going to need expensive therapies and so my dad gave up going to college in the summers. He had been working on his Master's degree in Biblical Studies. Eventually we got a second opinion and I was diagnosed with amblyopia. I wore an eye patch for about five years to try to correct the vision in my left eye. Today, my vision is 20/60 in my left eye when I am wearing my glasses, and my ophthalmologist recently wrote a referral to a neuro-ophthalmologist.

When I was about seven, my mother and grandmother were doing genetic testing for a disease that has been found in the women in my family. My great grandmother and my grandmother were both diagnosed with this disease, known as MERRF, a type of mitochondrial myopathy. They decided to get me tested as well. While we did not do enough testing for me to receive a diagnosis, a gene mutation associated with MERRF was identified in all three of us called TRPA1. Not much is known about this disorder besides its symptoms which include muscle pain and weakness, poor vision, epilepsy, etc. My mother is diagnosed with Juvenile Myoclonic Epilepsy.

I did not show many symptoms at this time, but symptoms generally begin expressing themselves in adolescence.

My next significant health occurrence was when I was eight and I began having chest pains. Doctors could not offer any explanation for these pains. We saw a cardiologist just to be safe and my heart was clear, so my mother assumed it was related to our genetic disorder. We were never able to get the pain under control, but I learned to live with it, my only restriction being that I was unable to run.

The next year, my life changed forever. At the end of March 2019, I began to have a terrible headache. After I missed an entire week of school because the pain was so bad, my mom took me to urgent care. They sent me to the emergency room because they wanted me to get either an MRI or a CT scan. However the doctors there didn't want to do either of those things and sent me home after I waited for about five hours. Over the next few weeks, my headache got worse and I was often shaky. I remember overhearing whispered conversations between my mom and her nurse friend. She mentioned seizures and that scared me. One evening, my shakiness turned into convulsions. My mom called my grandparents and we all drove back to the emergency room. This time, they admitted me into the hospital. Mom's suspicions were confirmed, I was having seizures. In the hospital I had an MRI and multiple EEGs. I was put on

medication and discharged after about a week. Surprisingly, I do have one very pleasant memory from my first hospital stay. One of the nurses discovered that I was missing a class field trip to Sea World. The day of the trip, Child Life brought me a huge gift basket full of all things Sea World. I'll never forget the people who made a hard time a little bit easier.

It was a challenge to go back to school after I was discharged. My mom had been taking such good care of me and I was emotionally not ready to go back to being a regular fourth grader. My homeroom teacher let my mom come to our class and tell the other students about seizures so they wouldn't freak out if I were to have one. Gradually I gained seizure control and was seizure free by June.

I maintained seizure control until I was eleven. In July of 2020 I caught Covid. Then about a month later, I began having chain seizures uncontrollably. My mom took me to the emergency room and they immediately began an IV and gave me rescue meds. Nothing seemed to be working, so they continued to increase dosages and gave me meds every half hour. Eventually I was so full of different medications that I was high and blacked out. I woke up the next day having been admitted. I stayed for about a week for constant EEG monitoring. I was discharged and put on a new medication. Unfortunately, my body didn't respond to this medication and my seizures stayed constant. I had them every day and was unable to attend school in the fall. Due to the pandemic, virtual classes were available to me. I spent every day lying on a sleeping bag on the kitchen floor during my classes. I saw no end to this misery and my mental health really took a hit during this time. I would do my best to do my schoolwork, but I always ended up with scribbles on my assignments. The school decided it was alright if my mom was my scribe since I was unable to write more than a few words at a time. One day while logging into English, I had an episode that caused me to fall from the chair and I ended up breaking my elbow. So after that I was not required to wear the school uniform, because it was difficult to put on over my cast. A few weeks later, my neurologist decided he wanted some more monitoring. So I went back to the hospital for another week. This time I was given an official Epilepsy diagnosis and a new medication. This medication was much more effective and I soon gained seizure control.

I was seizure free for over three and a half years, and during that time my neurologist retired and I began seeing a new one. In January of my freshman year of high school, I began having my menstrual cycle constantly. I saw a doctor after about a month of bleeding and was given a

blood clotter. This medication gave me terrible stomach pains, to the point where I wasn't eating. I also began having seizures again. For a while, we wondered if maybe I was anemic and these episodes were due to low iron. However we did an iron test and it was normal. I wasn't having as many seizures as I had previously, and I was attending school and taking part in the play. I lost a lot of weight, however, and continued to struggle with my cycle. Eventually I was put on hormonal birth control which regulated my cycle again. Since then, I've regained the weight I lost.

This past year my migraines got worse and I missed lots of school. I just started a new treatment for them and hope that the pain will get more manageable. I don't have seizure control, but I don't have them frequently. Overall I am doing better than last year, and for that I'm grateful.

I hope this has given you a glimpse into what a life like mine looks like. Always remember that anyone could have a chronic illness, so don't judge people you don't know. They could be

struggling just to wake up each morning. If even one person who reads this gains empathy toward people with invisible illnesses, I will have accomplished something.