Note: Y’all asked for it. Y’all got it. I’m not beating around the bush this time. This is really what Cystic Fibrosis puts me through on a regular basis. And, if this writing turns out to read like a rant and/or an angry letter, then I met my goal for this piece. Just let me know if you think I went too far so I don't get sued.

One evening, no more than a few years ago, I went to a dinner party with my mom at one of her many friends’ houses. This friend was fairly new to us. My mom met her shortly after we moved to Littleton, so she didn’t know us too well, hence the dinner. The dinner was alright, but none of the food really agreed with me. It was a very fancy dinner; far too fancy for me. Everything was heavily spiced to the limit and had thick dressings all over it. I could tell by looking at it that I’d suffer some pretty grave consequences if I ate just a bite of that stuff. 

Cystic Fibrosis has taken its toll on my pancreas. I was unable to digest anything at birth, because CF had already clogged my pancreas up with enough mucus to prevent it from releasing any of the digestive enzymes it produced into my digestive tract to digest my food. Given some time, my pancreas would effectively destroy itself with the digestive enzymes it produced but could not eject. It would take longer than what you'd think, because my pancreas will attempt to heal itself as its own digestive enzymes destroy it, causing a lot of scarring to build up over time.

If my pancreas didn't destroy itself that way within my lifetime, it would eventually get so clogged up with mucus that it will stop producing insulin as well. I've relied on enzyme pills made from the raw, ground-up pancreases of cows and pigs ever since I was a newborn to digest my food, but they're not the perfect fix and never will be. The heavier the food is, the less likely my enzyme pills will digest it. Whatever I don't digest just goes right through me, rather painfully and explosively. However, that's much better than the alternative, which is not taking my enzymes at all. If I didn't take them at all, I'd eventually die from starvation. 

I found myself in a dilemma; if I didn’t eat, then I’d probably be perceived as rude and called out for it, but if I did eat, I’d definitely have a gastric exorcism in no more than a few hours. Since I was way more afraid of being publicly shamed than destroying my toilet in the comfort of my own home, I decided to eat and just pray that nothing too horrible happened. 

My mom could tell that I was very apprehensive about eating, though she didn’t say anything. She just gave me a look. I stared at my cheesy vegetable casserole, mostly just dissecting it with my fork to see if I could identify any of the ingredients, while everyone else at the party stuffed their faces with it and remarked on how delicious it was. Eventually, I did take a bite. It didn’t taste terrible, but it wasn’t great either. It had a lot of peppers in it, and I was never a fan of peppers. Still, I continued to shovel mouthfuls of what was basically a plate full of laxatives down my throat until my plate was completely clean. When I finished, I sat back, scowled, and regretted what I’d just done. I took an extra enzyme in the little hope that it would save me from what was to come, but I knew, deep down inside, not even a whole bottle of enzymes would rescue me that night.

My mom stayed around to talk with her friends after dinner was done. As the minutes turned into an hour, then two hours, my stomach got increasingly upset. At first, it was just a mild discomfort, so I ignored it. 

Before we left, I overheard my mom’s friend say something I wish I’d never heard. 

“Sometimes, well, I don’t know…” my mom’s friend stammered, “Sometimes, I do wish I had a story. Like, a real story.”

“What do you mean?” my mom asked. 

“Well, I’m just an average mom with a healthy husband and kids. No one in the family has struggled very much. I know I haven’t. But, sometimes I wish I could go through something truly hard, anything, so I’d have a story to tell.” my mom’s friend practically whispered, “I’m sorry, Jen, but I’m actually kind of jealous of you and Maya. Especially Maya. You two have been through so much, especially her, and I think it’s well, just so amazing…”

I don’t think I’ve ever clenched up so much in my life. I had to actively tell myself not to burst into that room and get on a soapbox. Cystic Fibrosis was not something I took pride in or wished others had. It was actually the complete opposite. My gurgling stomach reminded me of how embarrassing and unpleasant my condition really was. 

On the surface, maybe it did seem like something that was cool to have in the eyes of a very boring person. Maybe I was a legendary badass with the backstory of the coolest superhero ever. However, that didn’t take away from the reality of my condition. It’s not only something that’s very dangerous, and I’ve had to work my ass off everyday to keep it at bay (which I was not always successful at), but CF is way too often more of a source of embarrassment than a source of pride and dignity. 

Thankfully, I think my mom was just as upset by her friend’s comment as I was, though she was way better at hiding it than myself. However, at that moment, I had bigger problems to worry about. I was severely bloated and starting to sweat from the tension. Once in the car, my mom looked over at me while I tried to curl up in a fetal position. 

“Are you ok?” she asked. 

“Mom, just get me home, like right now.” 

“Why? What’s wrong?” Mom asked as she dropped her body weight on the gas pedal. 

“That damn casserole,” I growled. 

I don’t think my mom’s ever sped as much as she did that night. Her friend’s house was deep in the foothills, so the roads were windy and teeming with wildlife. On top of that, it was the middle of January. Snow and black ice laid in wait for us like big bear traps with rusty iron teeth. Regardless, my mom knew that it was urgent, so she turned our puke green Honda Element into a Hennessey Venom GT. She fish-tailed around corners and pinned the throttle down straights, rarely, if ever, touching the brake pedal. By the time we finally made it to flat territory, I was squeezing my stomach with both arms, sweating profusely, and panting like a Malamute in the Saharan desert. I wasn’t sure if I was gonna survive the literal shitshow that was about to happen. 

I didn’t even wait for my mom to park the car in our driveway. As soon as I saw our house, I threw open the door and charged through the snow and up the slippery concrete stairs to our front door. Our lock was pretty quick to open once I punched in the code, but those were the longest 1.5 seconds of my life. I didn’t even bother to turn on any lights, except for the ones in the basement bathroom. My poor dog, who always expects me to pick him up and carry him around whenever I come home after any length of time, was left whimpering for me on the stairs. 

I dropped my jeans and unleashed hell on my poor porcelain throne. I also grabbed the little plastic trashcan next to the toilet and held it on my lap so I could gag into it. This severe indigestion episode didn’t last longer than ten minutes, but it left me exhausted, soaked in sweat, and still in excruciating pain. 

My mom knocked on the door and asked to come in to make sure I was ok. She found me curled over the bathroom trashcan while sitting on the toilet, absolutely destroyed. I was just thanking God the worst was over. 

“Are you ok? Do you need anything? Should I call someone?” my mom asked. 

“What? Yeah. I’m fine. I think. Just. Leave me alone.” I panted. 

“Ok. Sorry you’re sick.” my mom sighed as she gently closed the bathroom door behind herself and let me fester alone in my own self-inflicted misery. 

While I sat there, sick and shaking, my mom’s friend’s words crept back into my mind. The more I recounted what she said, the more my blood boiled. My mom’s friend was absolutely clueless of what CF really was. It wasn’t like a cool scar left behind by an angry grizzly bear, or a case of cancer that’d been defeated long ago. Cystic Fibrosis was something much worse that those two things combined. It was not going away anytime soon. It was not a thing of the faded past. I didn’t (and still don’t) expect to be cured of it in my lifetime. 

At that moment, for the first time in my life, I wished my mom’s friend would experience CF for just one hour. Perhaps, not even that long, because I knew she couldn’t take it. I was not upset by her horrible casserole. I chose to eat it, and I suffered dire consequences I anticipated before I even put a scoop of that stuff onto my plate. But I was quivering with anger thanks to her incredible ignorance. If she knew what CF really was, she would’ve thanked God a million times for not allowing her, or anyone else in her family, to have such a horrible disease. Perhaps if she looked at what her casserole did to me, the blood in the toilet would’ve been more than enough to convince her to never ask for hardship ever again. 

I spent the rest of my night curled up in a fetal position on my bed, holding a pillow and a heat pack against my stomach in an attempt to lessen the pain. It didn’t work as well as I’d hoped, but at least it allowed me to drift off into a very shallow state of sleep. My dog kept me company, and fell asleep curled up at my feet. Mom put a gallon of water on my nightstand, and expected it to be empty by morning. As hard as it was for me to drink water due to my illness at that point, over time, it did make me feel better. But the best antidote to my pain was my dog, who refused to leave my side the whole night. When my heat pack cooled off, my dog did not hesitate to take its place when I threw it and the pillow on my bedroom floor.

By morning, I was still sick, but was able to go upstairs to the kitchen and start chugging down a kombucha. My mom also made a quick run to the store to grab some kefir for me, which is a yogurt drink fermented specifically to solve major digestive crises. She also bought me a package of yakult for good measure. With those things, as well as a healthy dose of pancreatic enzymes, prescription-level probiotics, and the rest of my medications for the morning, I recovered. By noon, I was able to finish a meal, and by the evening, I was back to my old self. 

I was still very upset over the whole episode though. I knew most people pack on the calories when making dinner-party dishes, which is why I didn’t want to go to my mom’s friend’s dinner in the first place. That was not the first time the gates of hell unleashed their unholy wrath on my insides. And as long as I continued to join my mom at her social gatherings, that wouldn’t be the last time. It was very apparent that I needed a better plan. Instead of just gritting my teeth and making myself deathly sick, just so I could obey some stupid social obligation that I’m not even sure is an obligation anymore, I needed to grow a pair and actually start being more upfront about my needs. I didn’t need to go into detail when explaining the reasons behind my needs, but I still needed to speak up, or else I’d continue to suffer the consequences. 

Unfortunately, people tend to want to know exactly why I cannot eat their cheesy casseroles and heavily spiced soups, and are almost never satisfied with a simple, "It will make me feel bad". And, you know what they say, curiosity absolutely obliterates the cat sometimes. I'm way too shy and embarrassed by my condition to explain to people I barely know what CF does to me in any sort of detail (however, I am putting that info in this book so people will stop approaching me with all of their intrusive interrogations), and my mom doesn't really know what she's talking about if she tries to illustrate what happens to me. Even though she's my mom and has seen me at my sickest, she still has no idea what it's like to quite literally spew fire and brimstone out of all possible ends at the same time for 10 to 45 minutes straight without stopping, all because I ate a calorie of the wrong thing. So, there will always be misunderstandings and misconceptions about my condition I'm not exactly willing to clarify, especially to squeamish, 40-something-year-old mothers who spend their free time watching romance comedies and reading phony self-help books. 

There are just some things out there people should be perfectly content with not knowing. But, that's not how the average human mind works. There are certain groups of people I'm totally comfortable with opening up to about my worst experiences with Cystic Fibrosis, but my mom's group of friends is not even close to being one of them. Yet, they still insist I tell them what is wrong with me in great detail, and then get very offended when I just let the floodgates break off their hinges. Apparently words like "crap" and "explosive" are not acceptable words to use when explaining the very reason why I shouldn't eat what's served at most dinner parties.

Sometimes, when I haven't been to any interesting dinner party in a long time, my condition just decides to give me the finger, leaving me at a complete loss as to why I got sick. Maybe I took a handful of enzymes that turned out to be duds. Maybe my enzymes digested things just fine but they stopped working prematurely. Maybe I didn't have enough salt in my daily diet and all of the cilia cells in my intestines died for the day. Maybe my body didn't deal with my previous meal completely before I began eating again. Maybe my body just hates me and has to remind me every now and then what it's capable (and incapable) of doing. Whatever the reason may be, it remains a mystery. Cystic Fibrosis is just packed full of fun surprises. 

Despite all of this, I can still find ways to have fun with my severely debilitated digestive tract. I simultaneously have the weakest and strongest stomach out there. A slice of pizza will destroy me for a day, but I can eat all of the rocky mountain oysters and sushi I want and not even feel a little bad from eating it. I need to eat 6,000 calories a day so my body has a chance to absorb some nutrition out of all of it, which has given me a stomach better at holding food than those of professional competitive eaters. I can walk out of a buffet after eating 2,000 calories worth in food and still look skinny as a twig. I'll be hungry no more than 2 hours later, and the cycle continues. 

It's not unusual for me to eat several pounds of food in one meal. Normally, I'll eat two steaks alongside a few bowls of plants and a bowl of brown rice, and I'll wash it all down with a half-gallon of water. I'll repeat this meal up to 6 times in one day, not including snacks. As amazing as this is, it's just part of my survival. If I ate like everyone else, I would've died from malnutrition a very long time ago. In fact, that was one of my first near-death experiences before I was diagnosed with Cystic Fibrosis at two weeks old.

Doctors had no idea why I wasn't digesting my food before my newborn screening tests came back, and if it wasn't for my parents, I would be dead. The doctors wanted to give me a G-tube and just pump another 3,000 calories directly into my stomach everyday, without waiting for my tests to come back, because I was losing over a pound of weight per week and was literally starving to death. My parents refused that for me, saying they just knew it would kill me. Had the doctors gotten their way, my system would've been severely overwhelmed, and I would've died an excruciating death. 

Occasionally, I will break my own eating rules for special reasons. For instance, I was tempted to try the "gallon milk challenge" using four quarts of goat's milk, as that was what I had on hand. Goat's milk is much easier on my system than cow's milk because of its probiotic properties. I actually kept all four quarts of goat's milk down pretty easily, and didn't suffer any real consequences except for an uncomfortably cold stomach for a few minutes after I finished the final quart. If I tried the gallon milk challenge with cow's milk, like you're traditionally supposed to do, then I would've probably had some issues. 

I'll also spend a few bucks on junk food here and there. Most days, I eat very well, but some days I'll cheat and have a few bags of gummy bears. While I do get sick from it, the illness I get from eating a few bags of gummy bears with no enzymes is not nearly as horrendous as the illness I get from eating a heavy meal with enzymes. The enzymes, regardless if they digest my food or not, do slow down the process. If I don't digest anything at all, I might as well skip the middle man and just throw my meals directly into the toilet. But, if I digest just a little bit, everything else has to wait for that little bit of nutrition to be processed. That's why I have a huge jar of prescription-level laxatives hidden under the bathroom sink that will clear me out in 20 minutes flat, guaranteed! 

Aside from having severe digestive issues, Cystic Fibrosis has drenched my airways in a thick layer of mucus that has a tendency to ruin my day at the worst possible times. Usually, I can keep things from going south. But sometimes, like my bowels, my airways just decide to eject some colorful sticky stuff for no discernible reason other than to spite me. 

A simple sneeze has a chance of triggering a tsunami of blood and mucus, even if my lungs are supposedly clear. I regularly have to clean my motocross helmet because riding my dirtbike is like a vest treatment on steroids, causing me to hack all sorts of fun stuff over the interior of my helmet's face guard. Any sort of cardio exercise has that effect on me, and I've sort of learned to just not care about what others think when I hack things up in front of them. I can't control it, and if I swallow too much mucus, it can disrupt my digestive tract for the day. So, I just have to own it. 

Cystic Fibrosis, at its core, is caused by my body's inability to properly process salt in each of my cells. Because of this, my body is dehydrated. The Cilia cells within my body (cells we all have that help move things along, from food in our intestines to mucus in our airways) are almost all dead, because they require salt to stay alive. But since my body is pretty void of salt, there isn't enough to keep the Cilia cells alive. On top of that, my mucus is extra thick and sticky because it's so dry in my body. There isn't enough salt to keep moisture inside me, which means my mucus will be very thick and sticky, rather than thin and watery like everyone else's. If I don't keep up with my treatments, this mucus can and will build up very quickly, turning my airways into the perfect breeding ground for all sorts of fun stuff to breed. If my collection of super-bugs doesn't kill me first, I may literally suffocate to death on my own mucus. 

I may appear healthy now, but that doesn't mean my airways are completely clear of mucus. In fact, my lungs are always congested, just not enough to be noticed often. If I exercise particularly hard, I'll usually start wheezing before most people in my shape will. It's not a sign of illness. It's just a sign of Cystic Fibrosis. If I'm sick, that wheezing will be much more pronounced, and will probably be accompanied by a lot of coughing. However, most of the time, when I'm sick, I don't even try to work myself out so hard. I know that I could cause more harm than good if I work myself out too hard when I'm sick. However, being completely bedbound is not so great either. Even when I feel my worst, I have to get out of bed, and at least take a short walk up and down my street. Otherwise, the mucus in my lungs could build up and I could develop Pneumonia. 

But, whether I'm sick or well, I almost always have some amount of blood and snot exiting my airways into the outside world on any given day. It's just the way it is. 

Sometimes, I'll cough something out that's so impressive and intriguing that it attracts the attention of others. I'm one of the few people that can cough out literally all of the colors of the rainbow in one quick breath, so of course, this strange ability of mine will attract some unwanted attention. It's almost as impressive as my ability to eat 10% of my weight in one sitting and still look (and probably be) underweight. 

When I get sick, or am recovering from a recent bout of illness, my mucus production is kicked into overdrive. People who don't know me have accused me of being addicted to chew because of how often I have to spit when I'm sick or recovering from illness, even though I've never actually had chew before and probably never will. Similarly, I've been accused of being a smoker due to my gruff voice and/or coughing, depending on how sick I am, even though I can't stand the smell of cigarette smoke from a mile away. And, those who know me either don't smoke at all, or don't light up anywhere near me. Even vape pens are questionable, so my older brother Ryder doesn't take hits if I'm around. 

This reminds me, two years ago, Ryder and his best friend were down from Canada for a few weeks. Ryder's best friend saw that I did nebulizer treatments twice a day, and he had no idea what it was or what its purpose was, and he was too afraid to ask. A couple days later, while we're all sitting inside playing video games and waiting out a heavy thunderstorm, Ryder's best friend pulls out his vape stick and puts it up to his mouth. Before he could do anything more, Ryder literally slaps the vape stick out of his friend's mouth and points to me saying, "You do that, she dies!"

"But why?" Ryder's friend asked. 

"Because of her lungs." Ryder replied.

"But she smokes like twice a day!" 

"What!?"

"Y'know, the compressor thing she takes a hit of for like 20 minutes straight each time?" 

"You mean the nebulizer?" Ryder practically shouted, "Yeah, she smokes medication twice a day! That's so much different than vape juice." 

"But I thought you said her lungs couldn't handle stuff like that." Ryder's friend argued. 

"The medication she breathes in is specifically made to help her. Vape juice, on the other hand, is not made to help people breathe." 

"But..."

At this point, Ryder was baffled by just how genuinely confused and clueless his friend really was. I was too, but I kept quiet while I let Ryder deal with his friend. Ryder's friend decided he couldn't win the argument, but I don't think he ever fully grasped the concept or purpose of a nebulizer. Ryder's friend however, did approach me later on and asked, "So, do you think you can smoke other things out of that? Like alcohol?"

That's by far, the best question someone has ever asked me. Turns out, according to Google, you can smoke alcohol out of a nebulizer, but smoked alcohol can literally melt your brain and cause serious respiratory issues, so I'll never try it, or let anyone else try it. That's just got bad news written all over it. 

However, I'm asked stupid questions all of the time. Most of them are the usual, "So, is Cystic Fibrosis basically Asthma? I have Asthma, so I think I know what it feels like to have CF." and "So, what does mucus taste like?". I can tolerate them, but most of the time, I can't resist to answer their questions sarcastically. 

For the most part, for the same reasons I don't elaborate on my bowel issues with most people, I don't usually tell people why I have such glaring breathing issues but remain perfectly healthy without the help of an oxygen tube. It's just not worth my time. I have better, more important things to deal with than a random idiot on the street. I've really mastered the art of not giving a damn about what other people think of me, because my survival honestly depends on that. I've been bullied and discriminated against my whole life for things I cannot control. Instead of wasting my time and energy trying to validate myself to someone who clearly doesn't care to learn or understand something new, I've learned to just ignore them. The world would be a much better place if everyone just learned to ignore the idiots that populate the earth. Unfortunately, the world is literally run by idiots, and it will always be that way. That's just how humans work. Stupidity knows no bounds. 

In some ways, I actually appreciate the idiots in the world. I have a tendency to depreciate myself for being unable to do some things, such as figure out the copying machine at work. But, when I run into someone who is actually unintelligent, it really puts things in perspective for me. Sure, I may be technologically challenged at times, but at least I'm smart enough to accept that I don't know everything, unlike the alarming number of people who believe they know everything. I'm willing to learn new things and admit that I'm wrong when I am. At the same time, I'm also willing to fiercely defend myself and my positions when I need to, especially if I'm being challenged by someone (who has never been a licensed doctor) who thinks they know more about Cystic Fibrosis than me. 

Nothing drives me more insane than when someone who has no idea what CF is tries to tell me how to deal with it. Even my doctors have said some pretty stupid stuff in the past, and learned the hard way to keep their mouths shut if they think of something that just doesn't sound completely right. But, unlike my doctors, some people just don't know how to shut up or admit defeat, or most importantly, make up for it. 

Many of my mom's close friends have strongly bought into lots of alternative medicine quackery, and have preyed on us during desperate times to get us to join them. Nothing makes my blood boil more than an anti-vaccination mother with a bag full of essential oils and collodial silver, approaching me while illness has me roped and tied like a captive wild horse. Sure, I get pretty pissed off when someone admits they want more hardship in life because they are boring, but hell hath no fury like what happens when someone asks me if I've ever drunk lavender oil, gone vegan, or practiced yoga before, because I clearly haven't if I still have CF. 

I'm usually a very quiet and gentle person, until someone with a PhD in Quackery tries to sell me something I know is about as useful as a shit flavored candy bar. Due to Cystic Fibrosis, and the mysteries that science has yet to uncover about Cystic Fibrosis, I'm way too often approached by people who think they have the cure to CF. But, unlike many vulnerable people who are easily swayed into that stuff, I actually know how to put things to the test. I grew up being everyone's favorite science experiment, so it would be pretty incredible if I wasn't well aware of how science works. 

It is true that I do a few treatments that aren't exactly well-known or FDA approved, and am constantly on the lookout for more to improve my health. However, those treatments have a lot of actual scientific research to back them up, and produced some real, measurable results when I tried them. There's a huge difference between phage therapy treatments, which are approved by doctors, scientists, and government officials for real medical use in most European, Soviet, and Middle-Eastern countries, and the phony essential oils and detox juices American anti-vax mothers press me to try out every time I encounter them.

The only essential oil I'm willing to put into my body is Thyme oil. I usually put a few drops of it in my nose washes. However, it's not some magical cure-all like I've been told it is. It actually has a naturally-occurring chemical within it that irritates my sinuses, pressuring them to secrete more water to get things moving and out of my system. However, if I ever wanted to, I could just eat a habanero pepper and get the same results, although after watching Ryder eat several of those things in one sitting, I'll never even touch one. That stuff ruins your taste buds and sticks to your fingers even if you wash them. Ryder found that out the hard way when he went to the bathroom hours afterwards. 

Even when I was dying of a severe Pseudomonas infection and had nothing to lose, I still put in my time to deeply research phage therapy on credible websites before I signed up for a scientific trial in Portland, run by actual scientists and doctors, to try it. Even then, I remained hugely skeptical, and constantly asked for more proof that the stuff worked. If I smelled just a hint of bullshit during the whole process, I would've never put a drop of the phage solution into my nebulizer, even though I probably had less than 5 years to live, during which I would've been too sick to enjoy life.

The doctors and scientists I met in Portland were pretty shocked, and in some ways probably offended, by my extremely fastidious attitude. However, the doctor my mom first contacted seemed to have been warned about me. She came into the room armed with a couple books, a packet of scientific papers, and even a poster-board she used frequently at scientific and medical conferences, with all of the information I could ever want to know about phage therapy.

I relaxed, but not completely. The doctor mistook my smile as an invitation to listen to my breathing. But before she had a chance to get her stethoscope under my clothes so she could listen to my breathing, I instinctively grabbed her wrist in a death-grip and didn't let go until she explained what she was gonna do. Even then, I remained very tense and aware of her as she listened to my rattly breathing. When she was finished, the look in her eyes said it all. 

"This will be a hard fight." she sighed, "But you are going to be ok. These phages are made to help people like you. I am confident that they will save your life."

Her encouraging words were met with my skeptical scowl, and what was meant to be a frustrated sigh but turned into a malicious growl in my congested lungs. The doctor backed off a bit, slightly disturbed. I'd heard that sort of sweet-talk before, both from real doctors and holistic healers, and I wasn't about to fall for it again. I had no time for touchy-feely things at that moment. I was dying. I wanted credible scientific information and nothing else. I could feel all of my pent-up emotions later on in therapy.

Unfortunately, not everyone thinks quite like I do. Most people, especially those in dire need of help, are easily swayed by emotions, and can be lured into trying literally anything that is even slightly rumored to help their condition. And, since most doctors and scientists often lack the emotion most people are looking for, they are mistrusted and even labeled as evil by some groups. Real, credible medical science is then thrown into the wind, and replaced with touchy-feely phony stuff for the easily emotionally manipulated.

Most of my mom's anti-vax friends, who are heavily into holistic medicine, have sent me internet links to mommy blogs, which never actually based their claims on any reliable research or evidence. The few links those mommy blogs did provide in their articles just linked to more mommy blogs, and those mommy blogs only linked to even more mommy blogs, so on and so fourth. Whenever I confronted my mom's anti-vax friends for not giving me credible evidence for their wild claims, they went off on a rant about how the government, doctors, and scientists are all evil shills who just want to watch the world burn. 

I happen to be on a first-name basis with most of my doctors and many scientists working towards finding a cure to Cystic Fibrosis. I don't think an evil shill would shed tears with me, celebrate my victories by literally jumping up and down, listen to me with great interest when I tell them about a new treatment I tried out that worked, and participate in numerous CF fundraisers in all sorts of weather. I just wish I never had to see so many highly respected and educated doctors and scientists running up and down the stairs at the Denver Broncos football stadium, wearing nothing but colorful speedos and mirrored aviators. Every time I see them back at the hospital in their lab coats and khakis, all I can see is who they were at the Broncos stadium. 

There's no denying that there are a few bad apples out there, but they aren't too hard to pick out from those who are genuinely trying to make the world a better place. But, it's also important to remember that doctors and scientists are just regular people outside of their professions. And, like the people they are, they will screw up. That's why peer-reviewed medical journals, studies, and the scientific method exist, to prevent those individual screw-ups from becoming credible research. And, that's also why critical thinking is important. I'm not afraid to call a doctor out if they say something I don't agree with. Just because you have an M.D or a PhD in something doesn't mean you are immune to failure, or know everything there is to know about everything, including within your own field of expertise.

Most people don't have the same experience with doctors as I have. Because of the rarity of my condition, and especially because of how unique I am compared to the rest of the CF community, I've met almost every doctor and scientist working on CF in person at least once. My doctors' appointments are very frequent and very long, so I can meet with nearly every one of my 40 doctors on my team, as well as any medical students they may be dragging along. I never get to see their full faces in my check-up room, because they have to dress up in bright yellow gowns, masks, and latex gloves for my safety and the safety of other people with CF. Those disguises definitely take away from their humanity in a way, because I don't see a human face. I just see a hospital mask. I have to constantly remind myself that they are humans so I can have a decent partnership with them. And they have to constantly remind themselves that I'm more or less a doctor without a certificate, so they don't dumb down their explanations to me like they would anyone else outside of the CF world. 

I don't have time to keep up with politics or the local news, because I'm too busy keeping up with modern science as best as I can. In order to stay ahead of Cystic Fibrosis, I have to keep up-to-date with Cystic Fibrosis research constantly. And, in this day and age, a new article about an exciting new treatment surfaces nearly everyday. Similarly, I find articles about people with CF doing treatments I've been doing for a long time, written as though those treatments are brand new. 

If I opened my mouth for once, perhaps there'd be a lot more news articles and medical journal entries with my name on them. But I know better than to open up to people in the world, because of how insufferably stupid and naive so many people are. I don't like explaining my condition to people who will never understand, or will never admit that maybe they are wrong about some things. I don't appreciate being belittled for not looking sick enough or refusing to participate in medical quackery. At the same time, I don't like to be raised on a pedestal as if my fight with CF is something to be celebrated. When I was younger (and dumber), I let the CF Foundation put my face on their website next to some cute little paragraph congratulating me for fighting Cystic Fibrosis. But now that I'm older, I've refused their attempts to put my face out there for the world to see next to an article elevating me as the hero I don't see myself as. 

Like I said, I have no pride in the fact that I have CF. There is no pride to be had. I didn't ask God to have CF. In fact, if I had the choice, I definitely would've begged Him to give me a normal body, rather than the one that I have to continuously maintain to prevent it from being ravaged by Cystic Fibrosis. But, it's an uphill battle, and only gets harder with age. I know one of these days, I will start to really lose my grip. And that is honestly my worst fear. The fact that my decline is almost certain only makes that fear so much worse. Even worse, that decline could kick off next month, or won't start to happen until I'm 90 years old. Either way, the uncertainty is real, and I've had to accept that I only do my treatments to maintain a dying illusion of control. Well, that's not entirely true, but there's only so much I can do to keep CF from rearing its ugly head. Sometimes, like a real horse, it will rear up anyway despite the chains and bits I've forced on it, and I'll be helpless against it. 

Aside from physical symptoms, Cystic Fibrosis has a huge affect on my mental health as well. I often get very lonely because there's literally no one else in the world who can really relate to me, and vise-versa. Being around people, even those I know and relate to best, doesn't help with that terrible feeling of existential loneliness. I've had to accept that I'm alone in this battle with Cystic Fibrosis, because of how uniquely affected I am by CF. I don't fit the CF stereotype, and even a few other people with CF have accused me over social media of faking it for attention. I'm just not very sick, which is very strange, especially since I was born with one of the most aggressive forms of CF out there and given less than 16 years to live at birth.

I've tried to comfort myself by searching up about other people who may have very unique cases of their own health conditions. However, besides Stephen Hawking, there's not many people out there who have had extremely unique health circumstances that I know about. Most people who have had mystery conditions eventually learned what they were and got treated accordingly. But, unlike those who discovered the cause of their strange symptoms and got their treatments, much of what I have still makes the best scientists and doctors in the world scratch their heads.

My heart condition, for example, turned several of my atheist and agnostic cardiologists religious. Heart valves, as far as medical science is aware of, don't just grow back after six years and two surgeries, during which things were cut out and replaced with synthetic hardware. Yet, mine did just that, and continues to grow and function like a normal pulmonary heart valve. The only reason doctors know anything happened to me now is because of the scars and medical hardware they left behind within my body. My scars have faded, and my body used the hardware that was supposed to be temporary as permanent scaffolding to regrow my heart valve. My Pulmonary Atresia case was written about in many medical journals, but I think my parents refused to let the doctors stick my name next to it to preserve our privacy. 

I've lived well past every expiration date specialists have given me, proving to me that doctors don't always know what they are talking about. Not only have I lived past my supposed death dates, but I'm currently thriving with lungs that are just as strong as, if not stronger than, those belonging to an 18-year-old woman without CF! And, as far as my weight and height go, CF has not stunted me like it so often does to other people. I'm even physically stronger than the average woman my size, even though I don't have a membership to my local fitness center yet. My daily physical activity involves walking my dog until he can't walk anymore, and then carrying him back home. I wouldn't exactly call that cardio or strength-increasing. 

I've had to swallow the fact that there's no one else out there like me. God dropped me off in the middle of nowhere when I was born, and tasked me with blazing my own trail through hell. I used to be absolutely terrified of everything because of the trauma CF put me through. But now that I'm 18 years old and still going incredibly strong, that fear has been replaced by an unbreakable determination to live well into my 80s and 90s. Assuming God remains on my side and science doesn't regress back into the dark ages, I should expect to live a long life. That doesn't mean I shouldn't expect rough seas ahead. There will always be storms, uncertainties, and scares. But, I'm about as ready as I'll ever be to face those challenges along the way. 

Dealing with Cystic Fibrosis on the medical end is a partnership between me and my doctors. Most of the time, my doctors aren't lecturing down to me about my condition. Most of the time, we're bouncing ideas off each other. Occasionally, I get into a pretty big argument with one of my doctors over a new treatment plan or medication, because I am resistant to new things at times. Sometimes, my parents are the ones bickering with the doctors. However, no matter how much we may disagree, we always manage to agree to some sort of plan within an hour or two. I'm well aware that most people don't have this sort of relationship with their doctors, so they don't really see or understand what's going on behind the scenes.

I think that the anti-vax movement, for example, was spurred on by the ignorance of people and their apprehension towards their doctors who often use too many big, scary words, and don't always act like a human. Doctors and regular people rarely have intimate conversations about their health or the medical science that goes into medication and treatment. Most of the time, doctors are lecturing people for a half-hour about something that sounds big, scary, and unfamiliar, then they don't see each other for another 6 months or a year. Clearly, that is a problem in today's society, and is probably why people like naturopaths and anti-vaxxers exist. 

Aside from loneliness, I do have a lot of survivor's guilt. I'm well aware of just how rare my case of CF is compared to all other cases of CF, and how close I've come to death. Yet, compared to most of everyone with my same condition, especially those suffering from the same type of CF I do, I am miraculously healthy to the point much of my health can only be logically attributed to Divine Intervention. There's no other way to explain my health, because most people with my kind of CF decline severely no matter what they do, and are on the lung transplant list by the time they turn 16. In fact, an 11-year-old kid in my city with a less aggressive type of CF, who I read about on the forbidden CF message board, is on his death bed after a failed double-lung transplant attempt. And, his story is not very unique in the CF community. 

I, on the other hand, am extremely healthy and my case is basically unheard of until now. Because of that, I often ask God, "Why me? Why heal me but let everyone else die?", to which I haven't gotten any answers yet. To be honest, I don't feel qualified to take on the challenge God more or less tasked me with when I was born. He performed life-saving miracles for me. He provided a light in the tunnel when all hope seemed lost. And, God also gave me this amazing talent to write, which has been apparent for most of my life, since I was in kindergarten. Nobody else in my family is even close to being a writer, except for maybe my grandpa Lyle. But even he doesn't write nearly as often, or as detailed as I do.

Due to all of that, and then some, I think it's hard to argue against the thought that I maybe was put on this earth for a very serious reason. I wasn't just put here to live and die like everyone else. God is keeping me alive for some strange reason I just can't put my finger on. However, I just never feel good enough to fulfill this life's purpose, whatever it may be. I wish God gave it to someone else, because I'm always second-guessing myself and using self-depreciating humor to tear myself down while elevating everyone else around me. But, maybe that's all part of the plan. Perhaps, anyone else given my role in life would've gotten too big-headed.

I stopped looking at my local CF message board a long time ago, except for the occasional peek here and there, because it's full to the brim of deaths and intense suffering that I just don't care to know about. The CF message board is where hope and determination go to die. It's the place people go to admit defeat and say their final goodbye. It's the place parents with kids who have CF come to grieve and detail their child's last day alive. It's the place people come looking for hope, but they find the complete opposite of hope. So, I've stayed far, far away from that cursed website, even if my insight might benefit the general public if I ever mustered up the courage to start talking.

Instead, I've tried to focus solely on myself when it comes to my health. I've kept up-to-date with medical science involving both Cystic Fibrosis and the general public. I've kept up with all of my treatments, medications, calories, and exercise to ensure I'll make it through the day. I know CF is still too complicated for scientists to cure with the knowledge they have today, but I'm confident that they'll eventually find all of the answers and cure CF. Maybe it won't happen in my lifetime, but it will eventually happen, assuming we don't blow ourselves up first. Based on the current political system, as well as history, I don't have much hope for the future of our dying planet and am tempted to put a "Giant Meteor 2020" bumper sticker on my Jeep to express my pessimism. 

Sometimes, it isn't always possible for me to focus only on my own health. People often get in the way of things, demanding me to answer their questions or justify my ways of treating my condition. Many of my distant maternal relatives often try to force me into their medical quackery, claiming that since X worked for them, X will work for me too, even though they don't know half of what CF does to me. So, I'm often distracted, or forced out of, paying close attention to my needs, to defend my needs and ideas from those who seek to change the way I take care of myself to fit into their own wacky standards of living. 

When the world hears Cystic Fibrosis, suddenly everyone is an expert in treating it. Hordes of people with holistic medicine invade my online inboxes and even my own house with things they claim will help me out, though rarely, if ever do they give me anything that has an even slight effect on me. If essential oils didn't taste like the bitter apple stuff people spray on their shoes so their dogs won't bury them in the backyard, I'd probably drink an entire bottle of the stuff in front of those who told me it had some sort of special healing effects, just to prove to them that either I am indestructible, or their stuff just doesn't work. I'm willing to bet big bucks on the latter. 

One of the biggest feelings CF instills into me is fear. That's actually the main driving force that keeps me alive and fighting. I am very afraid of what my condition is capable of doing to me if I don't, and even if I do, stay on top of things. Cystic Fibrosis, especially the type I have, is very unpredictable and dangerous. I may be healthy now, but there's always a chance I could come in contact with the wrong bacteria in life, and induce a severe, steady decline, similar to the decline I had from Pseudomonas that took almost two full years to recover from. In some ways, I still am recovering from my battle with that horrendous bacteria, and just can't thank God enough for creating these little bacteriophages, which can be bred and genetically modified to seek out Pseudomonas and other very dangerous bacteria cells and obliterate them.

However, Pseudomonas didn't leave me completely free of scars or trauma. That was the first severe illness that I'd gone through where I basically remembered every detail of what I was put through. I went in for monthly tests and check-ups, most of which brought more bad news than good news. One time, my doctors wanted to confirm if the problem rooted itself in my sinuses, so they brought in a bunch of equipment to get bacterial samples from deep within my sinuses. Instead of sedating me like I would've preferred, they sprayed some numbing stuff into my nostrils, which numbed some things up there, but not entirely. It certainly didn't numb what they were hoping it would. My sinuses were so clogged up with mucus that I failed to suck the numbing spray up into them like I was supposed to. Instead, I breathed it all the way into the back of my throat, and panicked when it felt like my throat was closing up. 

A nurse looked down in there and determined that my throat wasn't actually closing up. Just some of my throat muscles had relaxed entirely due to the numbing spray. There wasn't anything to worry about, according to her, but I still remained very nervous and tense. I hated that feeling of a numb, relaxed throat. Just a few minutes later, a couple of doctors wheeled in a device they'd use to collect snot samples from my sinuses. They needed a tiny camera with a light to see what they were doing, and a very long and flexible sample swab to insert into my sinus cavities to pull out some snot. With me, they'd only have to go into the sinus cavity about a millimeter to get what they wanted, however they said that was still a very sensitive place, and to let them know if I felt any pain. 

I clung to the armrests of my seat with white-knuckles, and shivered in anxious anticipation while the doctors readied the equipment. I don't know why I was so afraid. I just was. It's probably because in the past, most of the scary equipment I've come into contact with were hardly ever easy or painless. I gulped when the doctor asked me to lay back in my seat as much as possible so she could insert the camera and the swab. She gently pushed the tiny camera up my nose, following it with the swab. She pushed it all the way up into my upper sinuses, and then moved it into the sinus cavity itself. Instantly, a very sharp pain shot down my spine, making me jolt and yelp in pain. My jolt only made the swab go into my sinuses even deeper, and I began begging my doctor through my helpless tears to get the thing out of my nostrils. I was very afraid and in a lot of pain, and was certain that was not how that was supposed to feel. 

She quickly pulled it out of my nose, and said that while she was satisfied with the sample she had, we still had to do the other side. She knew that the numbing stuff was working, especially when I told her how numb everything but my sinuses felt. However, she realized that the numbing spray did not go into my sinuses because of how clogged they were. She just told me to grit my teeth while she did it again, so I did. This time, I anticipated the pain, so I forced myself to stay perfectly still while she poked around in my sinuses for a quick second or two, which felt like an hour. 

When she was finally done, she dismissed me and my mom and said she'd contact us in a few days when my cultures were grown and analyzed. All of that adrenaline gave me the energy to sprint out of that hospital, leaving my mom still waiting at the 3rd floor elevators while I stood outside by our car in the parking lot, panting and shivering from the adrenaline. 

I don't expect to get out of therapy anytime soon after what I went through. 

Fights like those are a stark reminder of what I've been born with. Sure, I am extremely healthy for what I have, but I'm still living in the Grim Reaper's shadow. And, I'll tell ya, that son of a bitch is persistent! The key to cheating death today is not toughing it out anymore. It's learning how to outsmart and kill the infection before it kills me. And, when dealing with bacteria such as Pseudomonas, it gets very, very tricky. There are over 200 different species of Pseudomonas, and one kind of Pseudomonas can evolve into another one of those 200+ species of Pseudomonas in less than 48 hours to avoid getting destroyed (this is known as becoming antibiotic-resistant). It can also colonize every millimeter of my airways in that same time, slowly eating away at my tissues as it progresses. The stronger it gets, the faster it eats, and the less time I have.

The key to surviving such an infection is not to tough it out, but to counter it with genetically modified bacteriophages that are like heat-seeking missiles, and will replicate themselves within a Pseudomonas bacteria cell up to 40,000 times in 45 minutes, effectively destroying the Pseudomonas cell and releasing another 40,000 anti-Psuedomonas bacteriophages to seek out more Pseudomonas cells. To me, the hardest part about Pseudomonas isn't the Pseudomonas itself anymore, but the clean-up job after. Unfortunately, not many people can say the same thing. Most of the time, they don't live to execute the clean-up process. And even those who do, are often left too weak to rebuild what Pseudomonas destroyed, leaving them completely defenseless against the next bacterial attack they are faced with. 

Fortunately, or unfortunately, depending on how one looks at it, I generally look healthy after  long battle with Pseudomonas, or any sort of crippling lung infection for that matter. That's probably because I feel like I have the flu afterwards, so I wrap myself up in layers that make me look much bigger than I really am after a fight like that. That extra heat also gives me some color in my cheeks, hiding the greyish skin-tone I usually have when I get very sick and during the months immediately after I kill the infection. Also, I'm so used to feeling like crap that I can live through the pain, hiding the fact that I'm still really sick behind a reassuring smile and the will of a workhorse.

However, when I'm alone, particularly when I'm in bed, my inner demons will exploit my temporary weakness. The nightmares I have when I'm sick, and especially during the recovery process, are usually extremely intense and vivid, leaving me shaking and drenched in sweat once I can finally snap out of them. As afraid as they leave me, I know nobody else can really help me process what those nightmares exposed me to. So instead of waking someone else up to share my pain, I just have to remind myself that what I saw in my sleep wasn't real until I can fall back asleep again. But, that usually means I just fall back into the same night terror, and the vicious cycle continues.

People often think I'm just being lazy if I return to life slowly after a bout of illness. Even my own family has been guilty of thinking this about me, which doesn't help at all with my sense of belonging, or lack thereof. Sometimes, I do wish my condition was a little more visible. Perhaps I wouldn't be scolded or scoffed at so much for slowing down if I looked a little more screwed up on the outside. Upon thinking about it, I could wear V-necks and crop tops to expose my heart surgery scars, but that would also make me feel extremely uncomfortable as it has when I used to wear bikinis to the beach. Instead of showing off those faded scars, there are much better ways of dealing with the ignorant.

It's not people's ignorance that usually gets to me. My own mind has a way of turning against me when I'm at my weakest, and has the ability to absolutely destroy me. It often reminds me of what everyone else around me is capable of doing, while I'm incapable of doing those things. I just love to remind myself just how sick and far behind I am compared to everyone else. Even now, I'm really struggling with not going to college right away, even though I'll only be out for a semester while I learn how to drive, finish this book, and make some extra cash at work. My parents constantly remind me that, given the circumstances, I'm years ahead of where I should be, and just need to give myself a break. However, that's much easier said than done. Either that, or it reminds me of everyone with CF my age and younger who has died from the same infections I often get, almost as if my brain's trying to tell me I'm next. After all of the near-death experiences I've had so far, it's not completely illogical to have a slight feeling that my luck might be running out. If a car gets just an inch too close to me while I'm crossing the road, my head's definitely on a swivel for the rest of the day. 

Living with Cystic Fibrosis has definitely given me a hefty case of PTSD, just because of what it put me through for so many years. I've seen a lot of blood, mostly my own. I've felt a lot of excruciating pain from being stabbed with larger-than-average needles, pumped with insane amounts of heavy-duty antibiotics, and being infected with antibiotic-resistant flesh-eating bacteria. I've seen gurneys draped in white blankets being wheeled down the hospital corridor past my hospital room. I've been told by many doctors that I don't have a lot of time left, although I've lived past their predictions to the point they've stopped telling me to prepare a funeral for myself. I've heard about a lot of people with CF my age dying from the same strains of bacteria I've been infected with. I've met a lot of parents who've lost kids to CF, who are looking to me for peace and comfort, which are things I fear I cannot provide. And, worst of all, I know this war of mine will not be over with until I die. The way I count my victories is not by curing CF, but by living up to and past years I should've died during, knowing full well, one of these years, my mortality will finally catch up to me.

My own mental trauma doesn't affect me like PTSD typically affects other people. Perhaps that's because I can't really look back on my life and think in terms of the past, as in what I've been through will never probably happen to me again. A retired marine will never be called to serve his country again, effectively allowing him to come to terms with what he went through, and allowing him to heal and, in some ways, return to normality. What I dealt with in the past will eventually happen to me again. I will eventually have to fight another long battle with another severe lung infection, which could be a battle that I've had before, or I'll be faced with a new bacteria that requires a new strategy and set of medications to eradicate. Because of this, I often mentally break down whenever I'm faced with a new lung infection, because all I can think is, "Not again! Please God, not again!"

I'm constantly in fight mode, because everyday I have to be vigilant about taking all of my pills, doing all of my treatments, eating all of my food, and exercising to keep myself fit. When my flight-or-fight response is triggered, more often than not, I raise my voice, ball up my fists, and get ready to defend myself to the death. It's a miracle I haven't been in any real physical fight before outside of my old dojo, because of how easily startled I am by people to whom I've swung my fist at out of instinct before. 

It's practically impossible to treat something like PTSD when it's ongoing. Even if I do manage to heal, something else will happen that will just dig a new wound in the same place as the old one. PTSD is a real, physical wound that can be found on brain scans. The chances of me ever healing from my trauma are minuscule. So, I've just had to learn how to live with it. Therapy has certainly helped in some ways, such as giving me a person to vent to, although most of my battles with my pain are fought when I'm alone in bed, either stuck in some vivid nightmare or held down by sleep paralysis while I gasp for air. In the past, I have tried to confront my memories with my therapists. But that has only resulted in me getting burned even more by the very thing I tried to get rid of. I have induced severe migraines and vomited in front of my therapists when trying to defang my worst memories, forcing me to cut the sessions short. 

The best way I deal with my trauma is to turn my past into a set of jokes. While most people I know just cringe at how sick and twisted my humor can be, it's one of the best ways I can heal my pain. Laughter in that sense is truly the best medicine. Dark humor, like a kid with stage-4 cancer, never gets old, and the jokes I tell myself to get me through hard times have also assisted me in keeping my sanity. The only people who can share my humor, as far as I know, are war veterans who have lived on the front lines. My humor is probably not suitable for everyday people who haven't experienced the things either I, or my war veteran buddies have. While I do suffer from severe stage fright, the real reason why I haven't gone to an open-mic night is because I know, just from experience, that most people cannot handle my vile humor, even if they usually enjoy jokes that are very racist, sexist, homophobic, ableist, etc. My humor just goes way over the top, and make childhood cancer jokes seem like something a Fundamentalist pastor would tell to his congregation. 

Most of my tamer jokes require some context to understand. For instance, after having a particularly rough time on the toilet, I left the bathroom and warned my dad about it saying, "I just bombed Hiroshima, so you might wanna stay out of there for an hour until the radioactive smoke clears. You don't want your eyes to melt out of your skull, do ya?"

Another time, when I was being introduced to one of my mom's many friends, he asked me, "So, what's up with your health? How do you deal with such a terrible disease?"

And, being sick and tired of being asked the same old questions about myself, I responded by saying in a monotone voice, "I deal with it by doing a lot of drugs and taking a lot of hits. I'm still alive though, so I guess I'm fine."

He didn't know how to react. He didn't know what I really meant, and I knew that. Otherwise, I probably wouldn't have made the joke. Regardless, his jaw dropped, his eyebrows shot up, and all he could manage to mumble was, "What?"

And, I almost got sent down to the principal's office in 8th grade when I was doing Tobramycin for the first time to treat my first Pseudomonas infection. That stuff was brutal, and I had to do it on the way to school because I didn't have time to do it at home. It stuck to my face and made my eyes very red and watery for most of the day. One of my peers asked within earshot of a teacher, "So, why are your eyes so red?"

And I responded by shrugging and saying, "I hotboxed the car." which was true. I did hotbox the car with Tobramycin, but everyone else who heard me (which happened to be the whole class), including the teacher, thought I meant I hotboxed the car with weed. I spent 10 minutes of my morning explaining to everyone that I was not actually high, but that I was really just inhaling a very strong antibiotic to get rid of a severe lung infection, and tried to make a joke about it. Thankfully, by then, pretty much everyone was aware of my issues, and since I was perfectly coherent, they believed me and let me off the hook. But, that joke went down in history at that school. Even when I was long done with Tobramycin, both my peers and my teachers still occasionally asked something like, "So, did you have fun hotboxing the car this morning?"

When I met several war veterans in Boston for a weekend conference about resilience and getting through hell, I decided to test them by letting some of my worst humor loose. I made jokes about my mortality, laughed about my experiences with my recent fight with Pseudomonas, and talked about death as if it was some guy I befriended at a bar once who I somehow pissed off enough to make him threaten my life. Instead of getting reprimanded by them, my new friends erupted in wheezy laughter, and my jokes were referenced during the rest of the conference. This opened the door for them to share some of their humor, including using it to explain concepts to the rest of us. Everyone who hadn't experienced the level trauma either I or the vets experienced in our lifetimes, were extremely uncomfortable, and my mom had to leave the room once or twice to fully digest what was being joked about. 

Several months later, while I was at Clarke's, somehow Hitler and his atrocities came up in the conversation. This led to Clarke talking about how flawed Hitler's viewpoint of the perfect Aryan was. Hitler believed that strong, healthy, blue-eyed blonde-haired people were the ultimate master race, and everyone who wasn't a healthy, blue-eyed blonde-haired person wasn't worthy of living. However, Hitler wasn't blonde-haired or blue-eyed. In fact, studies suggest that Hitler had a lot of Jewish and African ancestry. If his own ideology was used against him, Hitler would've ended up in a gas chamber. And if we really think about it, I am Hitler's perfect creation. Cystic Fibrosis stems from a purely European recessive gene, and anyone who has CF has a very pure European bloodline. Pretty much every one of my ancestors is about as white European as one could get, as that's the only way the CF gene could've survived to get to me. So, if Hitler actually thought things through, I'd be his ultimate vision of the master race. Sieg Heil!

(For the record, racism is very bad and Hitler is the worst human being to ever exist on the face of the earth besides Stalin and Mao. His ideology is pure evil and should never be actually praised. Nazism should only be relentlessly denounced and/or made fun of, and never should it be taken seriously.)

Outside of verbal humor, I definitely have a lot of physical humor as well. For instance, when I'm at family get-togethers with relatives who have a childish sense of humor, we'll have burping contests, or someone will let one rip into the fire to see if they can trigger a small explosion. The "pull my finger" joke never gets old either. But, my favorite joke is called the Canadian Car Heater. When someone in one of the front seats of the car lets one rip, the windows are locked and the heater is turned up to full-blast, even if it's the middle of July, so everyone in the car except for the offender has to suffer.

Clarke taught me this long before my farts went from being pretty bad to being downright rancid. As time goes on, my pancreas gets worse at its job, and like I said, the enzymes I take don't digest everything. So, as you can imagine, things just straight up rot inside me sometimes, making the Canadian Car Heater joke so much worse when I participate in it. My CF has also taken its toll on my sinuses, so I don't have a good sense of smell. I can still taste food pretty well, but for the most part, the smell of rotting things does not affect me the same way it does to everyone else. So, I am usually not affected by anyone else's farts in the Canadian Car Heater, which makes it that much more entertaining for me. 

I'll also use food in my humor, since it plays a very important role in my survival. My mom is very squeamish, so occasionally, just to get a reaction, I will lick my wild game while it's still raw. My mom is convinced I have parasites now, which I honestly cannot deny, although medical tests haven't come up with anything like that either. Unless a tapeworm crawls out of my ass, I won't worry about what may or may not be growing in my intestines. Even then, I might adopt that tapeworm as a pet.

When my dad and I had rocky mountain oysters together for the first time, I looked at him, smirked, and asked, "Isn't it pretty gay if you eat that?" to which he replied, "Not if I say 'no homo' first." which I couldn't argue with. From then on, my dad mumbled "No homo" each time before he had another rocky mountain oyster. 

Not everyone gets my humor, or appreciates it, including most of my family members. Even my dad, who is known for taking jokes too far, can't always laugh at the jokes I tell, partly because he doesn't always understand them, partly because they cross his line. To me, no joke crosses the line. I have no line. However, I do dictate what should and shouldn't be shared with everyone else, including through writing, because I know most of my humor will not reflect on my mentality too well. 

I think I deal with my condition well because I allow myself to make jokes about it, as well as about every other horrible thing in life. If I didn't turn to humor in my darkest times, I would've died a very long time ago. Humor makes horrible things bearable, even for just a moment. That brief moment in time is all I need to take a few breaths, before taking on the whole weight of my condition once again. People may get very upset by my humor, as they have before. People may lose their respect for me. People may even try to use my humor against me. However, I don't care what the average person thinks of my horrible humor. Dark comedy undoubtedly saved my life, and will continue to save my life until the very end. 

And if you're the type to try and censor anything you don't agree with, including and especially humor, you're literally the second coming of Hitler, you book-burning nazi! 

Besides humor, I have my other ways of coping with life as well. Music has definitely played a big role in my life, though severe stage fright and the fear of being judged stopped me from playing the piano for anyone except for myself, since I was in elementary school. But, when I'm home alone and have nothing else better to do, I'll usually sit down at my piano and play to my heart's desire. Playing the piano forces me back into the moment, allowing me to forget about everything that's bothering me so I can relax. I can't read notes, but I do play music by ear, meaning I can listen to any song once or twice, and be able to play it perfectly on the piano whenever I want to. 

I've also gotten to extreme sports to help me reduce my anxiety. To the average, non-adrenaline junkie, much of what I enjoy doing is crazy, and well, I can't deny that. However, extreme sports definitely force me to stop thinking about everything, except for what is going on in the moment. When I'm riding my dirtbike in the mountains on a steep, narrow, and rocky trail, with a 20 foot granite wall on one side of the trail, and a 200 foot cliff on the other side, I can't let my mind wander, because one small mistake could end of my life. Dirtbike rides are my ultimate reset button. They simultaneously exhaust and energize me. They test my strength like nothing else. Just because I have an engine below my saddle doesn't mean I'm doing minimal exercise. In fact, enduro riding tests out my strength and tears up my muscles like no other physical activity I've tried so far, which makes it that much more rewarding. 

However, working with animals, horses in particular, has been my favorite coping mechanism so far. Sure, humor, art, and writing are things I can do literally anytime I want to, but working with horses has been the most healing for me. Horses are prey animals, They are also herd animals. Because of this, they watch every movement of every little thing around them, including and especially humans. Horses reflect the behavior of others, and use the most subtle body language to communicate with the world around them. 

A horse will tense up if I just slightly tense up one muscle. A horse will also relax if I remain perfectly relaxed in the saddle. Off the saddle, a horse can still tell when I'm even just slightly nervous, and will reflect my behavior in much more obvious ways. So, in order to safely work with horses, I've had to learn how to mask my fear in stoic bravery, to show the horse that I am not a threat, and there are no other threats nearby. A horse is about as worried about a cougar jumping out from behind a bush as I am worried about getting a Pseudomonas infection from drinking a stagnant puddle. In a horse's mind, every shadow, blind corner, unknown noise, and bushy tree poses a major threat. And, I can understand that fear. Perhaps, that's why horses are drawn to me, and I am drawn to them. 

If every other coping mechanism fails, sometimes I just have to sit down and listen to some music. I like fast-paced music like bluegrass and hard rock, or a mix between the two, but when I'm anxious, those genres don't help at all. So, instead I'll listen to something tamer, like older country music from singers like Waylon Jennings and Johnny Cash, some of the soundtracks from World of Warcraft, or outlaw country blues like the stuff Dallas Moore and Ray Wylie Hubbard sing. Music brings be back to reality without fail. It helps to calm me down, or keep me focused when I need to be focused. It's my caffeine when I have none, as well as the one thing that slows down my heart-rate when it's skipping beats from anxiety. 

People often criticize me for a number of things regarding my addiction to music, including my own family. My mom thinks I have a poor taste in music and listen to it too much. My grandparents, if they ever get to hear the music I listen to, would probably criticize it for being vulgar, loud, and ungodly. My dad said that the music I listen to is too badass for him to thoroughly enjoy. And Clarke can't help but cringe whenever I get a hold of the aux cord in the truck, and says my music sucks because it's not rap or alternative rock. 

But, I honestly couldn't care less about what people think about my taste in music. The beauty of music is that there's a song out there for everyone. Taste in it is entirely subjective. However, if music taste was objective, mine would certainly be the right stuff. 

I have a really, really hard time asking for help or even accepting help. Recently, my mom put out a blog post for work detailing how she got where she's at today. Her writing confirmed what I'd feared for years. The stress I put on her, especially when I am sick, is immeasurable. These days, we have the money and resources to fight CF to the fullest extent, and know a lot more about it than ever before. But seven years ago, my mom had less than $4,000 to her name, had just broken up with Clarke, had little to no help in raising me and my little brother, and I was sick constantly.

Doctors told my mom that my illness was just the natural progression of CF. Eventually, I'd end up with my own unique handful of antibiotic-resistant superbugs, also known as Burkholderia Cepacia Complex (BCC), and I'd either need new lungs or die. If my mom didn't move across town to live next door to her best friend, I probably wouldn't be here today. But her story is a constant reminder of how much CF affects everyone else in my life, and that rips me up, because I don't want people to share my pain.

I'm really good at hiding my pain and faking a smile. It just became instinctual, because I used it so often to get through school. It wasn't until my latest brush with death that cracks began to form. My experience with Pseudomonas in 11th grade really brought me to my knees, and reminded me that it wasn't always a good idea to fake it through the pain. Had my mom not noticed my pale cheeks, weak muscles, and dramatic weight loss, I would've attended school until I literally fell over dead. Sometimes when I was walking down the halls in that school, I seriously thought my legs would give out from under me, especially since my locker was on the second floor while many of my classes were on the first floor. But, like always, I just faked it to my peers and teachers. I didn't want them to worry about me. 

As horrendous as that bout with illness was, it was really the wake-up call I needed. By the time I'd gotten over round two of the illness, I became much more open to my family about my health. Sure, they weren't always the best emotional support, because more often than not, my mom and my grandparents would just burst into tears. My dad, who grew up with a heavily disabled father, seems to be the only person in my life who can remain calm even during my worst health crises. But at least my family listened to what was going on, despite their emotions, and watched over me to make sure I didn't die. Everyone did their best, and while we had our screw-ups and misunderstandings, I managed to survive and recover. 

Still, those several months did not leave me entirely unscathed. It actually left me very afraid for awhile. Sure, I never showed my fear to people, but I was always wondering what would happen if I caught Pseudomonas, or anything like it, again. I didn't want to repeat the hell I'd just gone through. My anxiety surrounding fresh water and hospitals went through the roof. My heart still skips a few beats whenever I get too close to a stagnant pool of water, or catch a whiff of hand sanitizer, as that stuff smells just like the hospital corridors I walked down so often while I was sick. 

But my history with PTSD extends far beyond my most recent fight with Pseudomonas. I've struggled with receiving tight hugs or being trapped in enclosed spaces like elevators for as long as I can remember. When I was little, and didn't have the coping skills to keep myself still during uncomfortable medical procedures, teams of doctors, nurses, and even my own parents had to hold me down, while I kicked and screamed, during medical procedures. Also, I've spent a lot of time in MRI machines and small hospital rooms, where the feeling of being trapped is inescapable. I still need my parents to hold onto one of my legs while I get MRI's done to remind me that I'm not alone, and there is a way out of there, so I don't lose my mind completely. 

I'm usually stressed and anxious at some point in the day, everyday. My fingernails have definitely suffered because of my anxiety. It's very difficult to remember the names, functions, and dosages of all 50 pills I take. I'm also constantly worried about coming into contact with something that might contain a superbug or two. I never put my wet laundry into the dryer (my mom does) or reuse wet towels, since those things are prime breeding grounds for bacteria such as Pseudomonas to grow. I also keep my bathroom squeaky clean, and use a lot of bleach to scrub the bathroom to make sure no mold or bacteria can grow. I even have a bottle of hydrogen peroxide on my bathroom sink to wash my hands with, just to be extra sure I'm not carrying anything around.

I'll often go around the house and wipe down the surfaces with anti-bacterial wipes, and use heavy-duty dish soap on the counters, just to make sure everything I touch is safe from bacteria that can severely harm me. Sure, I do occasionally still get sick, but that's just a part of life. I just don't want my house to be a superbug mating ground like so many places are. I want to be able to be comfortable in my own home, as I'm sure everyone wants to be comfortable in theirs.

I think my mom definitely appreciates my house cleaning rituals. Obviously, I can't get clean up every ounce of clutter by myself, but I can disinfect everything to make sure nothing harmful is growing anywhere. Basically, I pay my rent by keeping the kitchen clean, keeping all of the surfaces disinfected, and killing the big-ass wolf spiders around the house. My mom is terrified of them, so if she finds one, even in the middle of the night, I have to kill it. They're the biggest wolf spiders I've ever dealt with, and they sound like a chip getting crushed when I kill them. I cringe every time.  

Unvaccinated people are not allowed in my house. My mom relaxed this rule when she was still dating a guy called Matt, until Matt's unvaccinated son came down with the flu, strep throat, and a few other things that seriously could've ruined my life. I caught the poor kid's sinus infection, but thankfully nothing else. I was still not allowed back home for three weeks, and spent those three weeks between my grandparents' and Clarke's. During those three weeks, I was on an antibiotic called Bactrum to kill the sinus infection before it could turn into anything worse, and also on Tamiflu for 10 days to hopefully prevent any flu symptoms from showing. I'd also been vaccinated, though that doesn't always work for me due to my compromised immune system. However, at the very least, the vaccination reduces the symptoms and severity of the real illness if I catch it. 

The Bactrum ruined my digestive system completely despite my attempts to take the stress off it using probiotics and a modified version of my super-lean whole-foods diet, and the Tamiflu made it hard for me to sleep. Needless to say, I did not have a good time, and it took me awhile to recover from everything and get back into a routine at home. However, I do accept that as much as the side-effects sucked, getting the flu and/or allowing my sinus infection to get worse would've been a lot harder for me to deal with. The side-effects of those medications subsided in just a few days after I got off them, while it would've taken me weeks or months to recover from another severe illness. Since then, my mom and Matt had a falling-out over this incident and broke up, and now my mom's anti-vax friends aren't allowed anywhere near our house. Lesson learned. 

People do get frustrated by my strict sanitary rules. They just don't understand what the big deal is, and don't care to sit down and listen to my story. Perhaps, if they saw what a simple cold can do to me, let alone a severe lung infection such as Pseudomonas, then they'd understand things better. Beyond that, I recognize that much of my behavior stems from PTSD, and want people to understand that so they don't take things personally. I'm not looking for people to help me with my day-to-day life when I'm sick. I just want people to understand so they can back off and let me heal. Trust me, CF frustrates me way more than it frustrates anyone else. 

I wish I could go to the freshwater swimming pool like everyone else without worrying about getting sick from the water. I wish I could have a freshwater fish tank or a pet reptile. I wish I could tolerate the weather better so I could join everyone else outside and have a good time when it's very cold, very hot, very wet, or very windy. I wish I could spend more than a day away from a power outlet, and travel with only one suitcase. I wish I could get a job working construction or on a farm without suffering severe consequences from the dust and hard work. I wish... I wish... But, the reality is, I have a condition that is incurable, and if I don't take care of it properly, I will get very sick very fast, and die. 

If a cure for Cystic Fibrosis came out tomorrow, I don't care if it's a surgery or a pill. I will accept it in a heartbeat. Before shit really hit the fan, I used to see CF as more of a blessing than a curse. But since it almost killed me in 11th grade, when I could fully grasp and understand what was really going on, my mind has changed. CF is much more of a curse than a blessing, however I am extremely healthy for what I have, and am even more grateful for my health.

People mistake my health as proof I can do everything they can do, then get mad at me when I tell them I can't do something, such as go swimming at a freshwater swimming pool. Then they just get even more upset when I offer to take them to a saltwater swimming pool, because apparently they can't grasp the fact that the bacteria that can seriously wreck me cannot survive in salt like it can in damp, salt-less environments. If you put a freshwater snail in some water from a lake, it will be just fine. But if you put the same snail in some water from the ocean, it will die. Replace that snail with Pseudomonas, or any CF-specific super-bug bacteria for that matter, and the same concept applies. It's not that difficult to understand.

I'd have a much easier time dealing with CF if people didn't constantly get upset at me for things I cannot control, or for things they do not understand. Like I've said over and over again, I did not ask for Cystic Fibrosis. I do not like Cystic Fibrosis. If I could cure CF today, I would. But, I was born with it, and chances are I will just have to deal with it for the rest of my life. I'm well aware of how people with CF most often die, and am determined to not make the same mistakes. If I say I can't do something, there's a very good reason behind why I can't do it, and the conversation should just end right there. I know more about my condition than most doctors do. In fact, I've had to lecture new doctors and medical students before, because I could explain CF better than most of my best doctors could ever dream of. 

I've actually made some connections about CF along the way that my doctors never made. For instance, my lung function is better not just because God has miraculously saved me a few times, or because I take good care of myself, although those are part of it, but because I've had to seriously fight for every breath I've taken. I live well over a mile above sea level in a very dry, windy, salt-less, and often hazy environment. The strength I need to breathe normally out here is incredible, yet I do it all of the time and am completely used to it because I was born and raised in the Mile High City.

Meanwhile, people with CF who live in very salty, wet, sea-level environments such as Florida and California don't have to fight to breathe nearly as much. So, they are considerably weaker than me, and thus much more susceptible to infections, decline, and death. When I travel to places like Florida and California, I'll actually get overwhelmed by the easy air. It almost feels like I'm trying to breathe with my head out the window of a car on the highway. There's just too much oxygen for my body to deal with, and I'll usually choke and gasp for the first hour after I get off the plane until I finally get used to it enough to stop. However, I never truly feel normal until I get back home. 

I've learned that the easy way is not always the best way. My parents could've, and were even pressured by many specialists, to move to California for the sake of my health. There, I would have a much easier time breathing, but for all of the wrong reasons. While I would've had to do less treatments due to the salty air in California, I wouldn't have gotten so strong there. Colorado forced me to build up a great tolerance for pain, and also forced me to breathe harder, resulting in stronger muscles for breathing. 

I don't notice how hard it really is to breathe in Colorado. The only reason why I know it's hard to breathe is because other people tell me it is, and because I actually have visible abs even though I rarely do any real workouts to strengthen my core. Breathing is my core-strengthening workout, even though I don't notice it.

Recently, one of my dad's childhood friends, Joel, came from Minnesota to visit Colorado for a couple weeks. While we were walking around Breckenridge, Joel and his girlfriend (who are both athletically active and in decent shape) were huffing and puffing, and were completely shocked that neither myself or my dad felt the affects of the high altitude. I was all jacked up on caffeine, so I had no problem running around Joel and his girlfriend in circles while they struggled just to walk uphill, just to tease them a bit. They both took the joke well. But things like that really put my world into perspective. I really am healthier than most because I am stronger than most, and I can't be more grateful to live in the great state of Colorado after I figured all of this out. I guess Romans 5:3-4 is true in the sense that suffering is more often used for good rather than for bad. 

That doesn't mean I'm grateful for everything I've suffered so far. While suffering does build character, it also scars the sufferer for life. Sure, I'm definitely an insightful person after all that I've gone through, and I certainly don't fit in with everyone else, but suffering has also fed into my inner demons and biggest fears. While I may not show it, I am afraid often, and always anticipating another bout of illness or another night terror associated with PTSD. 

My suffering has also given people a lot of false ideas about me. They too often believe that I'm ok with being a poster child for CF, as if it's a badge of honor, and am very comfortable with telling people my story. However, that couldn't be further from the truth. I hate my disease and the things it's done to me. The last thing I want to be remembered for is this godforsaken condition I was born with.

Plus, all too often, the parts of my story I remember are also the most traumatic parts. Even writing parts of this memoir has been very difficult, and I've broken out into a cold sweat just thinking about some of this stuff. I've also had a few anxiety attacks and breakdowns while recounting certain memories for this book. My story is no easy story to tell. Not by a long shot. But, according to my therapist, writing about my life is likely how I'll heal from past memories, so I'll be prepared, or at least as prepared for it as possible, when the next war with illness comes. I'll never be cured of PTSD, but I can defang my past and put it somewhere on the back burner. But, usually it's only time that does that. 

Like how I don't let CF define me, I don't let PTSD define me. I still have a life to get on with, and I can't do that if I constantly live in the past. Sure, like CF, PTSD will occasionally bite me in the ass, and there's nothing I can do to stop it from doing that. But, when I'm healthy, far away from the hospital, and enjoying life, it's usually pretty easy for me to forget that I have PTSD. Plus, I'm so used to living with it, I can just function through life even if I'm in the middle of riding another wave of anxiety. 

However, when I'm faced with something that truly scares me, such as another serious lung infection, I'm not so functional. People often see me as being fearless, because I can kill spiders without apprehension and ride dirtbikes in the mountains. But, in reality, I'm anything but fearless. As soon as I'm diagnosed with yet another lung infection, and threatened with hospitalizations, and told I should expect some permanent lung damage, that's when I panic. Unfortunately, panicking only makes my illness even worse. My throat closes up, and my body secretes even more mucus as I struggle to breathe through my tears. There isn't much I, or anyone else, can do to comfort me. I just have to ride the wave, or, more accurately, choke and thrash around until the wave finally rolls over me, which can take more than an hour. 

But, once I can breathe again and have exhausted myself into relaxation, my logic and reasoning skills kick in. Fear is replaced with the tremendous instinct of survival, and from then on I know I must keep my shit together if I'm going to pull through with little to no permanent damage. I know I can't do it alone, however, even if I'm the only one who can fight CF. That's when I beg God for help, as He's the only One who could have any real influence on my condition. Miracles have happened before, and my faith assures me that they will happen again, assuming it's not my time to go. 

My relationship with God is certainly interesting. I'm not afraid to challenge or to mock Him. I'm not afraid to question God's morality or His ways. I'm not afraid to get upset at God and cuss Him out. But, at the same time, I'm not afraid because I know God will not forsake me. I know He understands, and will always accept me with open arms when I'm ready to give this whole faith thing another shot. However, God does not spare me from consequences. When my faith is slipping and my love for God is quickly dwindling, God won't hold my demons back. Sometimes, the only way I can be brought back to God is to have a run-in with evil, whether that be a horrible experience at the hospital, or an actual, paranormal event that defies all logic and explanation.