Like Forest Gump once said, “life is like a box of chocolates… you never know what you’re going to get.” No one knows everything we have, or are going to get, but we all have something or eventually get something. I guess that’s why we’re all here. Here’s my story.
Ever since I could remember, I loved to run, fish, play sports, catch lizards and butterflies, ride my two-wheeled bike, play games outside with my friends, and many other things. All of my favorite activities and hobbies started getting harder over time, from about age 6. I started feeling extremely out of breath, my feet kept crossing in front of each other, and my balance started to become unstable. My family and I didn’t really understand what was happening to me, but we knew there was something wrong.
By the end of sixth grade, I was diagnosed with severe scoliosis. Four and a half months later, I underwent a surgery, known as a spinal fusion with full back equipment to correct my scoliosis. In a spinal fusion, “the joints between the vertebrae are removed to loosen them up. The vertebrae are roughened up so that the body responds by producing new bone. The new bone eventually bridges the gaps between the vertebrae and makes them fuse together. Metal implants such as: rods, screws, hooks or wires; are put in to hold the spine still while the vertebrae fuse.” In my surgery, I got 2 rods and 18 screws put in my spine. After my surgery, it was a long road to recovery, I basically had to learn to walk and use stairs again. It honestly was a painful recovery, but thank goodness I had my surgery because I was done with the constant back spasms and being stared at by others because I was tilted to the side.
I didn’t completely understand why people kept staring at me and asking me why I don’t walk like a normal person after my surgery. I felt so down on myself because I didn’t feel like the average teenager. People cursed at me, told me I was anorexic, threw things at me, treated me like I was invisible, and worse of all, they told me to hurt myself. Almost all of elementary school and middle school, I got treated like this by others. Mentally, I never felt like I mattered. I felt very alone, but I would just keep my emotions trapped inside of me. Yes, I had my family and my very close friends but I still was not emotionally okay and I barely talked about my problems and the bullies at school to my family, even though we always tell each other everything. I just kept everything in.
Freshman Year of High School
Freshman year of high school was especially difficult. I started realizing I needed to hold onto someone when I was walking, as I did not want to fall and embarrass myself. During classroom breaks, I tried to make new friends but they ignored me and were rude to me. In my head I knew it would be the same like my past 2 schools, so emotionally, I was still not okay and not treated like a regular teen, either. When I finally thought I had a friend, I asked my “good friend” if I can hold onto her arm for my balance and gait, she replied with “No. I don’t want people to see me with you and I don’t want people thinking I am gay.” When she said that, I walked away from her and cried.
One day before class started, I dropped my breakfast on the way to first period and when I bent down to pick it up, I lost my balance and went head first into the corner of the concrete wall. After I woke up from my 3 second blackout, I was surrounded by guys that were laughing, pointing and recording me. Thankfully, 3 girls broke through the crowd and told them all off and then picked me up and rushed me to the nurse. There, I could barely see out of my left eye and my hearing was very muffled. My mom and dad ended up picking me up and taking me home. At home, I was laying down in bed but I felt so extremely dizzy, so I ended up throwing up. That was alarming to everyone because a concussion can cause a brain bleed. Therefore, I ended up going to get immediate scans of my brain. Those tests said I did not have a brain bleed. My family and I were so grateful. The doctors did tell me I had a severe concussion and they ordered me on bed rest for at least a week.
Getting Diagnosed with Friedreich’s Ataxia
A few days later, I went to a neurologist. She noticed my gait and balance were off, and knew it wasn’t normal and it was not because of the concussion. So, she ended up running all sorts of tests, including a genetics screening. A month and a few days later, I was officially diagnosed with Friedreich’s Ataxia (FA). FA is a rare, inherited disorder that causes progressive damage and movement problems. Usually, it begins in childhood and leads to impaired muscle coordination (ataxia) that worsens over time. Currently, there is no cure or treatment, but there currently are ongoing clinical trials. FA occurs in 1 in 50,000 people and I happen to be one of those lucky people that got it.
When I researched it, it was so much to take in. It took me almost 2 years to accept that I had FA. It just made me so down on myself than I already was. I ended up leaving school to focus on my health and cope with everything.
Sophomore Year of High School
I started school again sophomore year (when school started) but I didn’t physically go to school, I started participating in online school. It became so much better and I could work at my own pace and not be super stressed out. A few weeks after school started, I was diagnosed with cardiomyopathy (thickness of the heart) and pre-diabetes, conditions that are progressive results of Friedreich’s Ataxia
Middle of Junior Year of High School
I started having these very strange episodes where everything was so out of focus, I couldn’t hear anything because it was too muffled, I couldn’t stand up at all, my body tingled all over, and my body was basically completely limp. I think they were “mini strokes” and I had 3-4 of them at separate times. (This has still not be medically proven, so don’t quote me on that.) A few weeks later, I was getting out of the bathtub and I totally lost consciousness and fell back in the bathtub. All I felt is my body shaking viciously, therefore, it was most likely a “seizure.” (It also was not medically proven.) I ended up going to the hospital to see my neurologist and she admitted me to the hospital so they could run all sorts of tests, such as a 24 hour EEG of my brain (they found nothing), a EKG of my heart (nothing was found), and a complete blood screening for diabetes (they also found nothing). The last option was an implanted heart monitor. I ended getting the procedure done. Ever since I got the implant, I never had another episode, so we still do not know what caused the events.
The FA Community
March of 2018 I became involved in the FA community, thanks to my very good friend Shandra Trantham who also has FA. Let me just say she’s absolutely amazing. She brought me into a community of amazing people that are almost all my best friends *cough* *cough* Andrea Garcia Alvarez and Kyle Waterman and many more.
I am beyond grateful that I got to meet all of these amazing people that understand me way more than anyone else does. I just let go when I am around them because I know I won’t be judged for the way I walk or the way I talk and everything else that FA has done to me.
Yes, I want a cure, but if I never had FA I wouldn’t have EVER met the amazing people I have today.
Friedreich’s Ataxia will never define me. I may have FA, but FA doesn’t have me. We are still normal people just with some disadvantages.
My brain works perfectly fine and will always work fine.
FA is not me, it’s just a part of me.
Together we will cure Friedreich’s Ataxia once and for all. Thank you for reading.