A week after I tried my first phage treatment, I was back at school, excited to finally get on with life as usual. I didn't bother to tell anyone about my CF until I came back. Apparently, a rumor had spread that I had died, and no one really bothered to look into it. In fact, when I followed a student into an empty class room before everyone else arrived, her face turned white when she turned around and saw me standing on the other side of the room. She stuttered something I didn't hear, and when I asked her to repeat herself, she stuttered, "I-I thought you died."
I told her I just got really sick, but I lived, and then went back to unpacking my stuff for class. I must admit, I did look a bit startling when I first returned to school. I was still very pale, and I lost about 10 pounds, so my cheekbones were visible and I had to pull up my pants every 5 minutes because they sagged, even with a belt. My legs also trembled as I stumbled up the stairs. I lost a lot of strength while I was sick, and it would take a month or two for me to regain some of what I lost.
A few class periods later, I went into Anatomy and sat down. Shortly after class began, my Anatomy teacher started talking about the probability of passing on genetic diseases, and then looked at me with a grin and declared, "Maya knows exactly what it's like to live with a genetic disease!"
I felt my blood run cold as I quickly sucked in a breath and recoiled as all 20 students in the class turned to stare at me. I just wanted to skitter away and never return. Instead of running away screaming, I sunk in my seat, awkwardly chuckled, and mumbled something like, "Yeah, I guess so."
I went on to explain to 20 students that I had Cystic Fibrosis, and that's why I was sick for so long. I made sure to stress the fact that I wasn't contagious, and would never be contagious, but that I was prone to getting everyone else's colds and flus, which is why I was gone for 8 weeks. I didn't bother to tell them that it was Pseudomonas, not the flu, that kept me sick at home. I also told them that I was just as healthy as everyone else. I just had to take extra care of myself. I finally explained why I had to leave a few minutes early before lunch. A couple girls commented that I was lucky I could eat whatever I wanted, whenever I wanted, and not get fat. But I told them it wasn't worth it, for reasons I didn't bother to explain. They understood what that meant.
To my surprise, nobody really cared that I had CF. Sure, they had questions, but for the most part they saw me as one of them. I was just a normal person in everyone's eyes, which made me relax. In fact, some people thought I was a total badass, and had a lot more respect for me. A few boys even asked me out, saying things like, "If I get my truck fixed, can I take you to the motocross track? I also have a couple of horses if you ever want to go for a ride." and, "The Winter Ball is coming up. I know you said you don't like parties, but we could always do something else."
I quickly declined. I wasn't ready to date yet. I had too much to worry about before I considered going out. I felt bad for friend-zoning those boys, but they eventually got over it, and we remained friends.
I quickly became popular within the school. Pretty much everyone in the middle and high school knew my name, and even if they didn't, they knew my face. I don't know why I got so popular. Was it because I had CF? Was it because I was interested in hunting and motocross? Was it because I was just friendly towards everyone else? I didn't care to find out the answers to those questions. I just felt good knowing people weren't gonna ostracize or bully me.
Time seemed to fly by once I returned to school. Thanksgiving, then Christmas, came and went. I had a lot of good friends at school, and all of my teachers loved having me around. I don't know what I was doing right, but I guess I was just glad to be alive, and my victory over Pseudomonas temporarily turned me into an outgoing extrovert. I felt invincible, and like I could take on the world! My grades were decent, even in algebra, and my health was good, except for I slowly but surely started to deteriorate once again shortly after Christmas break.
My friends noticed my illness before I did. They asked why I had such dark circles under my eyes and why my skin was so pale. I wasn't sure, since I felt just fine. But within a few weeks, I started to notice other things. I had a worsening cough, and my sinuses were swollen again. By the last few days of January, I was miserable, but I always hid my pain behind a reassuring smile at school. I knew something was terribly wrong, but I was afraid to admit it, and I didn't want to alarm anyone at school.
Finally, one Sunday night in early February, my mom decided it was best I stayed home. I was very sick and needed to go to the hospital for tests. I argued against this, telling her I had already missed two months of school the previous semester, and couldn't afford to miss any more school. If I did, I told my mom I'd have to repeat a year of high school, which was the last thing we needed. But, my mom simply replied sternly, "You can't go to school if you're dead!"
I had nothing else to say, so I just sighed and went to bed. I stayed awake, staring at the wall, hoping I just had a bad cold. However, I knew it was something much worse, as much as I hated to admit it.
My mom got me into the doctor's early the next day, and as usual, they ran some tests and took some samples. My lungs sounded very rattly, and the doctor could barely see anything when she looked into my nostrils through the otoscope. She said I probably had a Staph infection, and we'd know for sure in a few days when my culture tests showed up. She just ordered me to go home and stay home until then.
A few days later, my mom found out the results from my culture tests. Pseudomonas was back with a vengeance. Immediately, my mom had me lay down while she put some more of the phage solution in my nostrils. She also put some of it in a nebulizer so I could inhale it deep into my lungs. At first, I was pretty confident that the phage would do its job like it did before, but when my health only deteriorated, I couldn't hide my fear.
Within two weeks, I was bedridden. I wasn't sick enough to be admitted to the hospital, so instead, my house turned into a hospital. My grandparents often came over to help my mom take care of me, and keep me company while she went to work. I hated being so sick. I was even sicker than I was the last time, because the infection had burrowed deep into my lungs and was literally turning them into mush. I often coughed up tiny bloody bits of lung matter, though I hid that from my mom because I didn't want to scare her more than she already was.
The phage did its job though. A few weeks after we started it, I went to the hospital to be tested for Pseudomonas again, and the test came back negative. It was the aftermath of the infection that crippled me. The phage had effectively nuked Pseudomonas to death, but it left behind a wasteland of mucus and scabs within my system that I had to fight to get rid of. I was also 12 pounds underweight, and didn't have an appetite. I just wanted to sleep all day, which I did, but my doctors urged my mom to get me up and moving around. I could easily develop Pneumonia if I didn't get up and move around.
As much as I hated it, I forced myself to go for a walk everyday, starting in March. At first, I just walked up and down my street, but then I decided to walk to the creek, which was just a few yards further. When I felt like I could do that easily, I started walking laps around my block. My mom also got me a bunch of art supplies because she said if I did something I enjoyed, that would also help me feel better. Finally, I went with my brother to Clarke's house every weekend to get out of my house and get some fresh air. But, it was usually way too cold and windy for me to really enjoy the outdoors at Clarke's house, so I just stayed inside and watched movies.
I discovered that laughter was the best medicine when it came to getting rid of the excess mucus left behind by Pseudomonas. Laughter forced the mucus into my windpipe and out of my system, so I often spent entire days watching my favorite comedies, from Dumb and Dumber to Jackass, coughing and wheezing as I fought to clear out my lungs. My mom didn't appreciate my evening movie choices, but she tolerated it anyway. On the other hand, Clarke loved those movies, and laughed along with me. We'd also jump on Youtube and watch some of the most ridiculous videos we could find. To this day, I'll still giggle uncontrollably whenever I think about some of the videos we came across.
For a time, school was a thing of the distant past. My mom got me off the roster at my previous school, only after my school sent us a letter threatening to sue us for truency, and told me life wasn't a race. I just needed to focus on getting better. I was doing a really good job getting well again, but I still had a long way to go. Every time I brought up school, my mom just shut me down. She made it clear that my health was the most important thing, and I should only feel guilty about not listening to her advice, which was to just stop thinking about it.
As the weather got warmer, I did start thinking less about school, and more about getting my dirtbike up and running again. I desperately needed to go for another ride. I just had no idea when I could. I was still too weak to ride, but everyday, I worked hard to get stronger.
Near the end of March, my doctors called me to the hospital once again. Instead of giving me bad news, they gave me good news. A new medication, called Symdeko, had finally been cleared by the FDA, and I could start taking it. Symdeko was developed to help try and fix the root cause of Cystic Fibrosis, which is my body's inability to process salt. Symdeko helps my cells out by untangling the salt chambers within my cells just a little bit, and helping my cells produce the chemicals needed to break down the sodium as well. Symdeko was three times better at its job than the previous drug, Orkambi. Orkambi basically did the same thing, but Symdeko was a major upgrade.
One of the few but most major thing I had to worry about when I took Symdeko were the intense side effects I'd go through during the first week I took it. I was told to expect migraines and mucus plugs, but that those were all good signs, since it meant Symdeko was doing its job. Other than that, I was told to just look out for any other reported side effects, such as deteriorating vision and possible liver damage. But, if any of those things came up, there were treatments out there that could help me. I thanked them, and headed home with my box of the new medication.
I was bed bound once again during the first week I was taking Symdeko. I had energy, but the migraine I had was so bad that I was seeing spots. So, I just laid in bed with the curtains drawn and a blanket over my head until after sunset, when I could get up and move around the house without being blinded by sunlight. My mom and brother avoided me for most of the week, since every little sound drove me nuts. I became nocturnal, and my family really only saw me a few minutes at night before they went to bed.
After that first week, my health drastically improved, and so did my mood. Since I was almost back to my old self, my mom started seeing if I could go back to school. Unfortunately, my previous school had mold in the air ducts, which is probably where the Pseudomonas came from. The teachers who ran my 10th grade Christian school were retiring, so it made no sense to put me in that school for just two months and then have nowhere to graduate. I also had to make up two months of missed school, so it really looked like I'd be held back. The only schools my mom knew of were the huge public high schools we both know I'd fail in. So, for awhile, we were stuck.
