I was born three weeks prematurely by c-section due to placental abruption, when the placenta, the organ that provides nutrients and oxygen to the baby, disconnects before it is supposed to, caused by preeclampsia, a complication in pregnancy brought on by high blood pressure that can lead to premature birth, a low birth weight, long-term health issues, and even stillbirth. I spent my first forty-eight hours of life in the NICU, the newborn version of an intensive care unit (ICU). I was ultimately diagnosed with left cerebral palsy, a condition that leaves great weakness or paralysis in the right side of the body, tight muscles, walking on tiptoes, poor reflexes, and over-exaggerated body movements, among other symptoms, from damage to the left side of the brain, which, in my case, was caused by a stroke I suffered in utero. Thanks to my cerebral palsy, I walk not only on tiptoes on my right side but also with a great, leaning limp cripple. All my life, I've had to regularly see an orthopedic specialist, get physical therapy, and was supposed to wear an ankle foot orthosis brace that went up to my knee. Before all that, my mother struggled greatly to conceive and spent three and a half years in constant fertility treatments. She and my father tried everything, having escalated all the way up the chain from basic insemination to the last resort of in vitro fertilization, taking every opportunity along the way that their insurance would cover. I began from their very last attempt at IVF, after they had exhausted their insurance, paid for out of pocket by them. As my mother put it, "I fought through hell and endeared hell to have you."
At age twelve, I was diagnosed with cyclic vomiting syndrome after missing outstanding amounts of middle school due to severe nausea and vomiting. For it, I was prescribed Ondansetron, a medication often prescribed to cancer patients that blocks the nausea and vomiting signals your stomach will send to your brain as needed. It helped me subside my vomiting greatly, and the rest of my middle school career and my freshman year of high school flew by without outstanding troubles. My following sophomore year, however, would quickly dissolve into issue. On the weekend of Labor Day 2023, while visiting my grandmother's in downstate Illinois, what started as a slightly less standard bout of nausea one night after dinner and increasingly painful cramps and other bodily pains, as well as great disorientation, became a complete collapse and blackout on the hallway floor just outside of the bathroom. My parents and grandmother were understandably freaked out, and following the weekend, I did not return to school. In November, my diagnosis was officially corrected to postural orthostatic tachycardia syndrome, or POTS, a condition where blood volume is reduced when going from lying down to sitting up to standing up, causing lightheadedness and dizziness, fainting, migraines, disorientation, and rapid heartbeat, among other symptoms. I was eventually able to do my school from home in a program they call homebound tutoring. This program is often used by students who were kicked out of school for bad behavior or who have an exceptional medical need, like pregnancy. In it, you are assigned a tutor who coordinates with your teachers, classes, and school to bridge the content from them to you. I was thankfully in reasonable enough health to mostly sustain that for the rest of the school year, closing with slightly underperforming grades to my usual, but well above passing nonetheless. This year, for my junior year, my parents and I attempted to resecure a spot in homebound tutoring, though, to the notice of my English co-teacher-turned-tutor at the end of last year, the school would undergo significant budget cuts this year after the conclusion of their COVID-19 pandemic relief surplus money, which included cuts to staff, curriculum, among other aspects, that we presume was the cause to my application ultimately being denied. I had to leave my high school in favor of a fully remote, homeschooling-esque option. It wasn't easy on me by any means; being with my local school through all this gave me the reassurance that everything would eventually pan out and be okay with time, but leaving left my entire world shattered in millions of pieces. It was heartbreaking.
All this to say—I've been through a lot, the past few years have been complete mayhem, and I've only just turned 17. It's absolutely unbelievable to say that out loud, given everything I've experienced, yet instead of being out having fun and partying with friends, acting like I'm invincible, as everyone always says, I'm stuck either in bed or on the couch, isolated from the world, with the closest thing to a conversation outside of my immediate family occurring over X, Snapchat or other social platforms. My parents and I have tried time and time again to make the best of it, and on the rare occasion I'm up to it, we do try to get out, whether it be to do a couple of errands around town or going out to eat for dinner, or something more eventful like a few nights out of town at my grandmother's or downtown Chicago for a change of scenery, but regardless of what it is we do or where we go, it's purely a temporary distraction, and these opportunities are increasingly sparse and limited. All the while, I've been barred from much of what I love—my writing, my ever-growing Steam video game library, all my other interests, the great outdoors, and perhaps most importantly, any meaningful communication with the outside world. I used to be so active, outgoing, and social; I used to hold myself to such a high standard, yet, these past couple of years, I've had to completely abandon everything.
I am now in a state where I cannot even sit up at my desk for any extended period, and I struggle with indecisiveness for even the simplest of things. Not much of anything we've tried or done has particularly helped; some have made things worse, and in the face of three MRIs, nothing viewable is wrong with my brain aside from the damage left by my stroke. My body is increasingly rapidly deteriorating because of my crippled walk, and it's becoming increasingly apparent that our only route out now, if there is one left, is a major orthopedic surgery involving the cutting of my Achilles tendon that I'd been brushing off all my childhood. Instead, I underwent a temporary round of botox and casting and refused to wear my leg braces out of discomfort as soon as my mother could no longer force me to wear them. We'd been forced to stop my professional physical therapy in elementary school, and I didn't continue it at home. Every day, I am confronted by dizziness and lightheadedness, disorientation, severe brain fog, rapid heart rate, severe pains in different parts of my body, headaches and migraines, sometimes nausea, and more. I go in and out at complete random of being able to sleep well, and the isolation brought upon me leaves me deeply lonely and sad. What I am going through is miserable; I am miserable, and all the while, my aspirational dreams of what I hope to accomplish in life are further crushed by an industrial press.