Months go by as you transition from home to the hospital and back home again. The appointments are endless, the symptoms are vigorous, and any sense of normalcy as a teenager is gone. More students than you think at the high school struggle with this lost sense of routine through trying to find answers to medical issues.
I have spent the past three years going to appointment after appointment, and struggled not only physically but mentally. The strain it has caused on not only my self-esteem, but also my relationships and ability to function as a teenage girl, my relationships have deteriorated through missing school, I had to quit basketball, and my illness restricted my ability to participate in all the extracurriculars I love, making me unable to function to my full potential.
During my Freshman year, I started to struggle with getting lightheaded all the time and oversleeping. I was exhausted and constantly fainting. I would go to school and then go home and sleep for the rest of the evening, sometimes falling asleep at five and staying asleep through the night. The slew of doctors’ appointments began in order to figure out what was causing me to be so exhausted and pass out so frequently. No answers were found.
My sophomore year it only got worse. Shaking episodes began, where my whole body would uncontrollably shake for no apparent reason. Occasionally, I would lose consciousness after the episode, but I always had the ability to talk and work through these episodes. At this point in time, all hope had been lost. Doctors had made me feel crazy and sure that there was no answer. After many appointments with many specialists, it was ruled that they were non-epileptic psychogenic seizures, which are seizures that don’t affect the brain, with an unknown cause. A sleep study finally resulted in a diagnosis of sleep apnea, this was causing the overall tiredness and oversleeping. To help with sleep apnea, a surgery to remove my tonsils and adenoids was performed. They were restricting my ability to breathe comfortably throughout the night, thus not allowing me to get a full night of rest. After the surgery, slight improvements were noticed, although I continued to have these seizures and continued to feel exhausted.
During school, one day, during my second hour, one of these fainting spells arose. I went up to my teacher’s desk and immediately fell. After waking up, a seizure began, and everyone was escorted out of the classroom. This was my breaking point. Passing out at school was not abnormal; however, it previously was always in private. I had never felt so humiliated. My parents and I concluded that it would be best to do school virtually until we had some answers. Still, we had no clue why these seizures were happening, and that can be exhausting. It is tolling not only on the body but on the mind as well. Endless nights were spent researching for the answers the doctors would not and could not give me. The schoolwork and exhaustion built up, my grades started slipping, and my mental health started declining.
After three years of searching, we have found answers. It all started with a concussion my freshman year of high school during a basketball game. This unaligned my eyes and ears in my brain being one cause of these seizures. The other cause and main factor of fatigue is narcolepsy which is a neurological disorder, it causes you to be extremely fatigued and, when tired, to seize.
I am now on medication that has prevented fatigue, thus preventing seizures. Extensive brain therapy also helped me for a year, brain therapy consisted of many eye and ear exercises that stimulated certain parts of the brain. Now my brain is back to fully functioning. I have successfully gone back to full-time school. These are all big accomplishments and things I am so grateful for. Although when I have long weeks or when I begin to overwork myself, the seizures will come back. Unfortunately, I will have to be medicated for the rest of my life; however, I am extremely grateful to have finally found answers and to be able to share my story to make others feel hopeful in the most hopeless times.
My sophomore year math teacher and one of my biggest mentors, Azure Barthlow has seen the effects this long medical journey has had on me. Barthlow knows the work it takes to be able to keep up with school, doctors appointments, extracurricular activities and medical dilemmas. Barthlow saw two key components in being able to persevere through this medical mystery.
“You’re a really hard worker and I think that helps set you up for success now even in these other years, because you formed these really good habits for yourself, of discipline and getting your work done, advocating for yourself and communicating with all of your teachers about your needs,” Barthlow said.
The character that these issues build is not unseen by outsiders, Barthlow saw that hard times and extreme adversity created strength and built character in me.
“You are very kind and I feel like you really try to make others feel included as well, going through your own struggles has helped you be more kind about that kind of stuff,” Barthlow said. “I think it has helped you become more outspoken with your peers, with the adults in your life, with your teachers, and be able to advocate for yourself because that’s a really hard skill to learn too, it’s a really hard skill to talk about yourself and be vulnerable with people I think that it has just made those skills even stronger for you.”
Although my situation is unique, you may be surprised to know that more people than you think have undiagnosed medical issues. Sophomore Sydney Pflug has struggled her whole life with serious digestive issues she thought were normal, but as the symptoms worsened and increased, she started seeing doctor after doctor and was left in the same boat as I was, with no answers.
The effects that illness has on you do not end at the physical side. It takes a toll on everything you do in life, especially in school.
“It affects my time at school because I miss a lot of school, and I am not able to focus because I am in pain,” Pflug said.
As well as affecting school work, Pflug has found it is also taxing on her mental health and her self image. She often doubts herself when it comes to her symptoms after countless doctors have told her it was just anxiety.
“It made me insecure a lot because I didn’t know if it was what I was dealing with or my actual health. It made me wonder a lot about what’s going on, is it my fault or is it not,” Pflug said.
Not only do these medical issues affect school and mental health, but your mindset and outlook on life can change drastically when your focus is switched from living your life to surviving it.
“Not having answers makes it hard to focus on your future, your life, and doing what you want to do,” Pflug said.
Similar to what Barthlow sees in me, science teacher Michela Gustaitis has seen Pflug persevere through her medical problems throughout this year. She sees the work that Pflug does outside of school even when in the hospital, or sick and finds it extraordinary.
“Despite being very ill and not knowing what’s going on with her health, she was still taking initiative and having accountability to do her studies, learn, and have her schoolwork take priority, take responsibility to learn on her own, and ask questions. I think it’s very impressive because not everybody does that even if they’re not sick,” Gustatis said.
Gustatis values Pflugs positivity and bright spirit throughout her struggles and her overall ability to be kind and welcoming to everyone.
“Even if no one else is happy to be here, she’s happy to be here. She’s always super positive, even if she’s not feeling well, always happy and ready to go. She wasn’t feeling well today, and still was happy to be here. I think that is like a real test, and it really shows her character.”
As we walk through the halls each day from class to class, we don’t think about the struggles of our peers; every person is going through something different, and you really don’t know until you reach out or ask. It is imperative that we think about these things in order to develop a strong community and a welcoming environment, in order to make everyone feel valued and seen. Barthlow understands the importance of this as well as the cruciality of empathy.
“There’s a lot we don’t know about people even if we interact with them every day, I don’t always share what I have going on, I’m sure my students don’t always share what they have going on, or my coworkers,” Barthlow said. “I think it’s just important to be kind to people, treat everybody the way you want to be treated, treat people with kindness and usually if you’re empathetic that helps put you in a better mood and also them in a better mood, it just makes the day go by nicer.”
Living life with a constant question mark over your future is extremely difficult. It is important to reach out and talk about your struggles so you can feel less isolated and realize many people struggle with similar things and are willing to talk about it.
Pflug and I continue to try to do the things we love to the best of our ability without letting our illnesses affect us or restrict us. It is so important to continue to do what you’re passionate about even through the struggle.
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