To be honest, I spent more time sleeping and playing video games than I did on praying, and when I did pray, I spent most of that time ranting at God for being so careless towards me. God clearly did not care about me if He allowed me to go through so much torture, at least in my mind. But, despite my irreverence and anger towards Him, God refrained from striking me with a deadly bolt of lightning the next time I ventured outside. Looking back, I've realized that God was showing me a lot of mercy, patience, understanding, and love by not letting me die. Sure, I was in tremendous pain, both mentally and physically, but I wasn't dying anymore. I wasn't even at the slightest risk of dying anymore. I was still sick, but the risk of death was nonexistent.
I didn't even begin to realize that my hatred towards God had nothing to do with God, but had everything to do with me, until I finally saw a light at the end of the tunnel. That light was a home school program provided by the county that I strongly qualified for, and could use to graduate high school on time. Before then, I was certain I'd have to repeat a grade, which meant I'd have to endure another two and a half years of hell instead of just one and a half. But, with this home school program, the likelihood of me repeating a grade dwindled. Unless I suffered another crippling infection, I was going to graduate high school on time. I just had to be willing to pull my own weight, since chances were, I wouldn't have anyone around to crack the whip. I had the reins, and that was very exciting to me!
In order to get into that home school program, I had to somehow buck the system. Most of my doctors strongly urged me to go back to the same school building that tried to kill me twice, and that school had a hold of me and refused to let go. They wanted me back, and would fight through hell to get me back. By then, I was healthy enough to fight for myself a little bit, but my mom held me back, reassuring me she had everything under control. She'd much rather keep me in the dark, because she later admitted she didn't want me to get my hopes up too high. She wanted me to focus all of my time and energy into improving my physical health, in case I was dragged back into a regular school environment.
While my mom and her lawyers fought the school system, I set my sights on getting completely back to my old self, but I had a long, hard road ahead. I weighed 112 pounds soaking wet, when I really should've weighed between 130 and 135 pounds. Most of that weight was muscle that I'd lost, so in order to gain my weight back, I had to exercise regularly. It was getting to be the middle of March, so the seasons were changing, and the weather was warm enough for me to venture outside in several layers. Since I'd lost so much weight, I didn't have any insulation, and my circulation issues also contributed to my inability to stay warm.
I finally emerged from my hibernation den ready and excited to experience warmer weather. But, I soon realized I couldn't just venture outside like I wanted to. I couldn't make it down the street before I started getting wheezy and sore, and I'd be ready to collapse from exhaustion by the time I limped back to my doorstep. But I pushed through it, and everyday, I was able to get a little further without stopping to rest. Unfortunately, the changing seasons and seasonal allergies were not kind towards my joints or my sinuses, so if it was gusty or cold ahead of a weather front, I was stuck at home, wrapped in down-feather blankets, massaging my throbbing knees and knuckles. Ibuprofen only did so much, but it didn't numb the pain enough to make it possible for me to go on a walk.
During this, doctors excitedly announced a new prescription drug for me called Symdeko. At the time, I was on a drug called Orkambi, which aimed to help my cells function a little more normally to reduce the rate at which CF progressed, and make my health a little more tolerable. Orkambi only managed to help my cells function a little less than 10% better, but that 10% had massive effects on my health, as well as the health of those with the same kind of CF I had (double delta F508). I didn't experience nearly as much success on Orkambi as most people, because I was so much healthier. Orkambi had an exponential effect on a person's health, depending on how sick they were. The sicker a patient was, the better Orkambi, and drugs like it, worked to increase weight and lung function.
Symdeko spurred on my cells to work 20% better, which meant I might see a jump in lung function, as would many others, though that increase in lung function would be marginal for me. Still, it was a very promising drug, and certainly gave me hope for the future. However, Symdeko also strengthened my notion that it was science, not God, that had been behind my health all along. So, I again found myself challenging God to do something to prove Himself. I did so very confidently, because I firmly believed God was finally dead, and I could get on with life without Him. If science could cure CF, and God couldn't, who in their right mind would call Him God if He didn't have the power to cure CF? How could an all-powerful God, Who has supposedly existed forever and created the universe, lose to 30 years of research at curing CF?
Turns out, curing my Cystic Fibrosis was not on God's list of priorities, but getting me into a better school environment was. After fighting the system for almost a month, my mom finally got me approved for the home school program. She told me it took a few miracles along the way, so I ought to thank God more than her for it. I smirked at that, but my mom reiterated that and told me she was serious. God was there every step of the way, answering every prayer my mom had.
I really didn't know what to expect, and to be honest, I had zero expectations. I didn't want to get my hopes up only for the home school program to fail, because if the home school program failed, I was certainly going back to the dilapidated school that almost killed me twice. That thought sent chills down my spine. I knew if I attended that school a third time, I probably wouldn't live long enough to graduate high school, and I certainly wouldn't graduate on time! So, I finally mumbled my first non-accusatory prayer since before I got sick the first time, asking God for reassurance and peace. I needed to know if I was going to survive high school, and still maintain my recovering health.
