Note: I've been wanting to write about my health for quite some time now, but my brain just doesn't want to cooperate with me, so I feel that my writing's choppier than usual. Harry Potter melted my neurons...

My second semester of college ends in T-minus three weeks, or five more in-person classes, or three more in-person days. I must say, I felt (and feel) much better this semester than I did last semester. I will, once again, pass my classes with high grades, and I haven’t struggled to keep up with either class. At least, until I finally began to sputter out sometime last week. But, I’ve done my calculations. Even if I did absolutely nothing for class between now and three weeks from now, I’ll pass with a high B, if not still A’s. 

Overall, I’m feeling pretty damn good about this semester. I am also champing at the bit for summer. I am so damn ready to take some time off school and get out of my neighborhood more. I'm excited for the trips I've got planned, to see friends and family I don't typically get to see, and to hang out in places I don't usually get to hang out at. And, I'm looking forward to just relaxing at home: staycationing almost without any obligations. 

However, my summer won’t be all unicorns and butterflies. My body seems to need a few repairs this summer. Aside from getting new glasses, I need to figure out why my body fat and vitamin E levels are so low, and fix it. Well… I actually already know why I’m 140 pounds of pure muscle with very low vitamin E levels. I don’t like to eat high-fat foods of any kind. Frankly, I’m repulsed by almost all high-fat foods. 

On one hand, it’s great I can now avoid all fatty meals and still retain an impressive body weight and overall good health. If I wasn’t on Trikafta, I would’ve been hospitalized for malnourishment months ago. But, now I can live pretty healthily on a nearly-zero fat diet. Well, at least, I thought so. 

Turns out, fat does play a major role in one’s overall health. Without it, our bodies struggle to digest fat-soluble vitamins, most notably vitamin E. Our bodies also get more tired, and go into a state of semi-starvation when there’s not enough fat. Also, little-to-no fat can cause and exacerbate heart issues, which might explain why I’ve been getting more light-headed than usual. Clearly, 10 grams of morning fat with Trikafta just ain’t cutting it. 

Since discovering my low vitamin E levels a few months ago using a routine (though very comprehensive) blood test, I’ve been working really hard to reintroduce a substantial amount of fat into my diet. However, I can’t say it’s going all that smoothly, which has both frustrated and scared me. 

Even with Trikafta and my Creon (AKA my enzymes), my body continues to violently reject high-fat, high-calorie meals. The indigestion I experience now isn’t as bad as it was pre-Trikafta, but it’s still very uncomfortable, disruptive, and embarrassing. 

A few weeks ago, I decided it would be a good idea to get a burrito from Chipotle for lunch between Tuesday’s classes instead of my usual grocery store sushi. I made sure to add extra steak, sour cream, cheese, and hot sauce to my burrito so I could get maximum calories out of it. It was delicious, and all was well for the next hour-and-a-half or so. But, in the middle of class, I felt what I can only describe as a jolt in my gut; like my body was grinding gears. Immediately, I knew my dignity was in serious jeopardy. 

Without hesitation, I packed up my stuff and rushed out the door, telling my professor I just had a doctor’s appointment I’d forgotten about and was late for. I’m not sure he believed me. 

I didn’t want to undergo a gastric exorcism in any of the restrooms on campus, so I prayed to God I could make the fifteen minute drive home without shitting myself. Thankfully, my body wasn’t about to let me destroy the interior of my Xterra forever, but every bump and pothole in the road shot intense stabbing pains all up and down my spine and to the tips of my fingers. It was very cold outside and I kept the windows rolled down to stave off some of the nausea, but I was still very hot and soaked in sweat. On top of all that, I seemed to hit every single red light possible, and traffic was unusually busy. If there is a Hell, I was in the ninth circle of it for that whole drive. 

When I got home, I didn’t even bother to roll the windows up or fix my horrible parking job. I simply hauled ass to my garage door, tapped in the code, and slipped in under the door as it opened. Normally, the door from the garage to the house is unlocked, and opens directly adjacent to my bathroom, but not that day. So, I sprinted out of the garage and up to my front door, punched in the code, and thank God the door finally opened for me. 

For the next hour I was stuck on the porcelain throne in a fetal position. I was in immense pain at first, but the pain gradually subsided as time wore on and my bowels were successfully evacuated. Still, the whole experience was quite humiliating, and brought back some very uncomfortable memories from my pre-Trikafta past. 

This wasn't just a rare incident, unfortunately. I've been on Trikafta for two years, which has undoubtedly helped to clear out and maybe even heal parts of my pancreas. But, Trikafta ain't a cure, and my pancreas can never be fully healed, which is why I've stuck to such a low fat diet while on Trikafta. But, now I'm suffering the consequences, not just from low Vitamin E levels, but from forcing a lot more fatty meals down my throat. My digestive system hasn't been very happy with me.  

Thankfully, I’ve never shit my pants in public, pre-Trikafta or post-Trikafta, but my body has definitely betrayed me in other ways that, to me, were just as embarrassing and soul-crushing. I’ve always wanted to distance myself from my health problems because of how socially ostracising they are, and pretend that they simply didn’t exist. I’ve never wanted to identify myself with any of my conditions. I never asked or chose to be born a genetic fuck-up. I just was, and I’ve been dealing with it ever since. 

Still, I like to pretend that I’m “normal”, even though I’m not. I am closer to being “normal” than I’ve ever been in my life, but things like the Chipotle episode and the blood tests remind me that I’m still stuck with Cystic Fibrosis. 

CF doesn’t have it’s claws clasped around my throat anymore. It’s more like a separate entity, a demon, who follows me wherever I go and watches me from afar. It knows it can’t really fuck with me too much. It knows it can’t kill me, or make me cough up bloody mucus, or turn every minor cold into a major lung infection anymore. But, that demon can still remind me of its presence by turning my Chipotle into The Shits, and it’s patiently waiting for the second shoe to drop (if it ever does), so it can pounce on me and make my life a living, breathing hell once again (something, something, don't you know CF wears a suit and tie?). 

At this point, I'm beginning to accept the fact that CF will always be with me, no matter what I do, or how far medical science progresses, or how much I beg God to make my CF permanently disappear. God, as much as I hate to say this, allowed CF to exist for a reason. I don't believe He specifically picked me out to be born the way I was born, or I was ever allowed to choose who I wanted to be before I was born. It's just the hand fate dealt me, and fate ain't fair. 

However, suffering is universally necessary for a lot of reasons. I don't believe a world without pain and suffering has ever or will ever exist. Even Scripture alludes to the idea that a perfect creation is not without its challenges. From the very beginning in Genesis, God commanded Adam and Eve to multiply, subdue, and dominate the Earth, all of which are extremely harsh terms. Plus, if death and suffering didn't exist before Adam and Eve ate from the forbidden tree, how could they've successfully multiplied and dominated the Earth without annihilating it in the process? I don't think even a perfect Young Creationist's Earth could properly handle fourteen billion human beings and counting, plus every animal that's ever existed since Adam and Eve's time. Without the death of animals (which humans are animals), overpopulation would ravage the Earth. Without the death of plants, animals and humans (in this hypothetical world) would have nothing to eat and would simply waste away. On and on. 

But, I digress. 

What I'm trying to get at is this: suffering and dying are both a fundamental part of existence, especially the suffering part (as I believe in the afterlife, reproduction won't be necessary, therefore death won't be necessary). Remove suffering and I believe you're wiping out existence too. We can discuss what an existence without suffering would look like till the cows come home, but I don't think that conversation goes anywhere, especially coming from my current views on suffering (which, by the way, is always subject to change). 

But, what I'm more than happy to discuss is the nature of suffering. Or, in other words, what life would look like if all our wishes came true? 

As a little kid, my idea of a "perfect existence" would be one where I was a healthy adult with few things to worry about, and all the time in the world to play video games and hang out with animals. When I was eighteen, I had begun Trikafta. That same year, covid reared its ugly head. Of course, I (being the paranoid germaphobe CF made me into) took covid super seriously. I kept my distance from people, hoarded hand sanitizer and medical-grade N95s, and basically did nothing all day except play video games and go hiking with the deer. It was fun for about two weeks or so, then shit got really old. By the time I got my covid vaccine, I had pretty much gone insane, and I was extremely depressed and anxious, to the point my favorite hobbies were sleeping and pacing around the house. 

My childhood "dream" came true for me, and it was a living Hell. 

So, the question now is: would my life have been any better had I not been born with Cystic Fibrosis? Would I have felt life was any easier had I not been born with CF? Is it right to fantasize about a life I will never live? Is it right to wish for a life, deep down inside, I wouldn't trade the world for; a life without CF?

The short answer to all of these questions would be, "No."

Humans experience pain differently. What might be devastating to one may be nothing to another, and vise versa. A kid who loses their first pet hamster might feel the same level of grief an adult feels when they lose a close friend, but an adult probably won't be phased by the death of their pet hamster after experiencing the loss of a close friend. A person without CF who gets a cold might be sick at home for a week, but I barely notice regular-old colds, especially after what CF's put me through. See what I'm saying?

I don't think I'd be any happier if I wasn't born with CF than I am currently. I don't think I'd be any stronger or braver had I been born without CF than I now am. I may have different fears and insecurities had I been born without CF than I have now, but I wouldn't be completely without fear and insecurities if I didn't have CF. In fact, quite the opposite. 

CF, in large part, has forced me to be my authentic self. I couldn't hide from it, nor could I hide it from others. CF, for my entire childhood, ruled over me like a gargoyle perched up on my shoulders. It weighed me down. It made me sick. It physically altered my appearance and stamina; I was grotesquely skinny and pale, with dark sunken eyes and stringy hair, my voice permanently altered by years of harsh medications that scarred my vocal chords. Throughout school, I was ostracized and bullied as a result of my CF. Many kids and adults feared I was contagious. Many parents refused to let me stay for birthday sleepovers because they didn't know how to take care of me and were afraid I'd keel over dead. I used to enjoy singing when I was little, but now as an adult, I can barely hum a tune without my voice cracking, let alone sing. 

Even when I was in middle and high school, going to Tae Kwon Do four times per week and going to a school that emphasized athleticism (that school being called Girls Athletic Leadership School), I still appeared frail and weak. I still fell sick often, and I was unable to keep my CF a secret no matter where I went or who I knew. Even when I thought I'd successfully hid my CF from everyone, someone close to me (especially my mom and grandparents) would scream my "secret" for the world to hear, and once again, I was no longer just a girl or woman. I was a disease. A disability. A walking health hazard. Akin to a rabid wolf, foaming at the mouth and almost bald with mange. Something was fundamentally fucked-up about me that I couldn't change. And, even if I could hide it, my family wasn't shy about revealing my deepest vulnerabilities to the fucking universe. 

So, to take back my life-story, my dignity, my strength, I decided just to own who I was, and amplified the things I was proud of the most. My mom could tell everyone about my CF and Autism, but she couldn't force me to retire the camo, or my love for nature and science and video games, or my obsession with 4X4's and firearms, or stop me from being physically active (to the point of being detrimental to my health), or get me to tone down my redneck country music. And, when I owned and amplified the parts of me that I loved, suddenly my family's constant hawking about my CF was drowned out by my obnoxious redneckness. 

On top of that, my family's rudeness (for lack of a better term) turned me into a writer. If I could organize my life from my point of view onto paper, I could process it, own it, and publish it with my name stamped on it, so that nobody could take or bastardize my identity, my story, my experiences ever again. 

Don't get me wrong, I love my mom and grandparents to bits, and their points of view are an important aspect of my life story. But, they sure as hell don't get to "own" my story, in the sense that they can speak over me anymore. I cannot and will not allow that. 

Along the same vein, I want to drive a massive wedge between me and my conditions as much as possible, as I am not my conditions. I am not CF. I am not ASD. I am not my depression, anxieties, or my phobias or my fears. I am not any of those things. I am who I am because... well... it's just who I am. Did my health issues play a role in shaping my personality? Sure. But, can they explain my love for nature and science, my addiction to World of Warcraft, my need to physically stay active, the foods I love the most? 

No, not really. There are lots of people out there with both CF and ASD who have wildly different interests and ideas and personalities than I do. CF and ASD don't dictate whether or not I'm introverted or extroverted, a tomboy or a girly-girl, my favorite color or my favorite taste, whether I prefer dogs over cats, or anything of the sort. 

Yet, so many people, including those closest to me, love to point at my health conditions as reasons for why I am who I am, and why I like who and what I like. Sure, my conditions may play a role in my interests and personality, but they are not the fundamental cause of them. My favorite color isn't red because CF made me prefer red over green. No, I just like red because... well... I just like that color. Again, see where I'm trying to go with this? 

God, I wish there were more words to describe what I'm rambling on about. I'm so close yet so far to the points I'm trying to get across. So. Damn. Close. 

After reading back on what's been written so far, I have found some common themes. Themes relating to identity, frustration, and downright rage at my circumstances, my life, and those whom I love very much but still have some bones to pick with. Largely because those people don't treat me or respect me in the way I wish to be treated and respected.

My family (as wonderful and loving as they are), has a long history of crossing my boundaries, especially ones that I have in place to protect my physical and mental health. Out of all the bothersome things my family tends to do, bringing up my health issues without warning or permission is, perhaps, the most problematic of them all. Most people I run into don't need to know exactly why I'm so picky when it comes to food, or why I sometimes "shut down" and hide in a far room at a party. Those conversations should only be reserved for the people I trust the most, and those (like my doctors) who need to hear it in order to keep me alive.

Unfortunately, much of my family's (especially on my mom's side) yet to get the memo. I've tried for years to tell my close family why it bothers me when they tell others the most intimate details on my physical and mental health seemingly out-of-the-blue. Apparently, in their eyes, if I'm willing to talk about my health problems in a memoir and among my closest friends, then everything regarding my mental and physical health is fair-game to talk about at dinner parties and among co-workers. 

What they don't get is that I don't typically bring up my health issues completely without warning. I'm very careful and deliberate when disclosing my health issues to others, and prefer that most people I encounter have no idea that I'm anything other than normal. Ok, I may come off as a little eccentric to most, but that doesn't typically make people treat me much differently. 

What exactly do I mean when I say, "People treat me differently". Well, many people tend to patronize me upon learning about how "different" I am. Many people also treat me with pity, and try to protect me from and help me with things I don't need any help or protection from. It also really rubs me the wrong way when people say that I'm "so inspirational" and "am the most badass person" they know. I mean, I'm just living my life. It's not like I wanted to be born a genetic abomination, or have any idea what it's like to not be afflicted by CF and ASD. It's not like I could've been anything but strong and stubborn. CF is as normal and a part of me as the sensation of taste. It's just... there. 

Also, I'd rather talk about virtually anything with people besides my CF or ASD. The only reason why I talk about my health conditions with some people is because A) it's necessary, and B) with certain people, it's therapeutic. Writing is also a therapeutic tool I use to survive. But, it sure as hell ain't necessary or therapeutic to talk about my health issues with most people, especially those introduced to me by my family. Because then, I'm either a fragile little flower, or I have some god-like supernatural powers (because only people with god-like powers can survive as I have, apparently). 

See where I'm going with this, still (my brain's still running on fumes courtesy of Harry fuckin' Potter, and caffeine isn't helping).