“I did it all

I did it all

I owned every second

this world can give

I saw so many places

The things that I did

Yeah, with every broken bone

I swear I lived…”

~ The CF theme song

AKA “I lived” by OneRepublic. 

 

The summer heat was really starting to get to me. While mild for Colorado this time of year (knock on wood), the roasting hot weather has kept me indoors and in my basement den, away from the summer sun’s oppressive rays. But, it wasn’t healthy to spend my days completely inside, only going outside after the sun had set behind the foothills. My anxiety, depression, and even physical health issues were becoming more of an issue the more I spent my days inside. Something had to change.  

I sent one more email to my doctors at the Cystic Fibrosis clinic to get one more dose of reassurance from them. Then, I looked up my results from past doctor’s appointments and scanned over my throat culture results over the past couple years or so. Aside from a few outliers, I’ve been Pseudomonas and MRSA free since starting Trikafta. And, even when I was infected with Pseudomonas and MRSA, they had absolutely no effects on my physical health. I was no longer at such high risk of getting even slightly sick from those godforsaken bacterial infections. 

Finally, I glanced over my shoulder at my mountain of morning medications, all stacked on top of a box of Trikafta: the drug that saved my health forever. 

“What are you waiting for?” I silently thought to myself, “You’re good to go swimming now. You survived your mom’s covid, the waterfall by Cripple Creek with your family, the creeks and puddles in the Valley. Get your ass into the pool. You still have plenty of time.”

It was only 7:15 in the morning. I’d been woken up early by my dog whining to go outside, and now that I was up, I couldn’t go back to sleep. The main swimming pool in Ken Caryl Valley had “Adult Only” swim lanes open in the mornings until 9:00 or so. I could spend almost two hours in the water if I got up, pulled on my swimsuit, and drove the three minutes or so from my house to the Valley pool. Logically, I knew everything would be okay. 

Emotionally, however, I was still torn. Water-borne bacteria kicked my ass before Trikafta, and I hadn’t even come close to getting over the trauma of those “episodes”. But, my emotions were just emotions. They weren’t facts. Sure, my emotions were valid, and fed my very real and valid fears. But, unlike what my “lizard brain” was telling me, neither Pseudomonas or MRSA, or any water-borne illness for that matter, could hurt me any longer. My anxiety, depression, and restlessness were far more destructive to my health than swimming, now that I was strong and healthy. I needed to get my ass in the water and return to my mermaid lifestyle.  

My doctor was very quick to get back to me, sending me a simple, short email in response to mine: “Yes. You will be just fine. You are healthy as can be. Other people sicker than you can handle the water just fine with Trikafta. Go swimming, it’ll be great for you!”

“Alright!” I said aloud, “I’m going!”

I got into my swimsuit (which still fit me perfectly six years later) as fast as I could, and when I looked at myself in the mirror wearing my navy blue one-piece, I was almost startled by my appearance. The thing fit as it was supposed to! Last time I wore it, I remember it feeling quite loose, and I wore a long sleeve swim shirt over it when I went snorkeling in Florida. But, I no longer needed something like that. I felt confident in my healthy-looking body for the first time in… well… for the first time ever! 

I pulled on jeans and a T-shirt over my swimsuit to wear on the way there and back. But, instead of stepping into my cowboy boots, I slipped into a pair of colorful slides I’d gotten from a Puma store awhile back. 

Driving to the valley, I blasted loud, fast, rock music to stave away my anxious thoughts. I knew I was going to be just fine in the water. I knew I was healthy enough to swim. I still knew how to swim and keep my head above water. I knew there weren’t going to be many people at the pool for “Adult Swim” time. I knew I could spend as little or as much time in the water as I wanted to. I knew everything was going to be okay. Perhaps, I would even enjoy myself!

At the Valley pool, I was greeted with the faint scent of Chlorine on the breeze. I also noticed that there were some people in the pool, but not too many. Half of the lanes were open, and those who were swimming looked to be much older than myself; I didn’t feel intimidated by the swimmers at all. The lifeguards had some Pop music quietly emanating from speakers in the lawn around the pool, and there were birds of all kinds singing from their perches in the surrounding trees. All was amazingly quiet and peaceful. It was a perfect environment for me to swim in. 

I scanned my pool card, plodded over wet pavement to an isolated lounge chair in the sun, and pulled off my T-shirt and jeans. I then grabbed my red foam kickboard, claimed a lane starting on the shallow end of the pool. Without really thinking, I plunged into the warmish water, head first, with my kickboard ahead of me. 

The instant I hit the water, it was like I’d never quit swimming. My anxiety was completely washed away from me, the warm water relaxed my tense muscles, my veins were flooded with excited adrenaline, flushing away my depression. I couldn't help but smile ear-to-ear as I lifted my head out of the water and shook my hair away from my face. Fond childhood memories of swimming came rushing back to me. I was always a fish. Apparently, I still was. 

I planted my feet against the wall of the pool and pushed myself forward, and began to propel myself through the water with doggy-paddle kicks as I held my kickboard ahead of me. At the other end of my lane, where the water was six feet deep, I let go of my kickboard and practiced treading water. Despite not swimming in deep water for six long years, I had absolutely no trouble keeping my head and neck well above the water’s surface. Again, it was all completely natural to me. I loved the feeling of the water around my entire body, holding me afloat as I gently moved my arms and legs in a circular pattern under the water. I loved the scent of the Chlorine mixed in with the sweet scents of prairie grass and wildflowers on the breeze. I haven't felt pure joy like that in... well... I honestly don't know how long. 

I spent five minutes or so reveling in my ability to stay afloat, before grabbing a hold of my kickboard and finishing my first lap in the pool. From there, without even thinking or keeping track of time, I just kicked back and fourth up and down my lane, in a state of pure bliss. I’d successfully taken back something I thought my health had stolen from me forever. I’d successfully (and instantly) conquered a deeply, deeply, deeply rooted fear of mine that had imbedded itself into my very soul for the better part of six long years. 

In a way, being in that water was my final “fuck you” to CF. It no longer had any control over me. With Trikafta in my system, I was going to swim wherever I wanted, whenever I wanted, however I wanted, and nothing, especially Cystic Fibrosis, was going to stop me. 

Well… that might not be entirely true. 

I did eventually wear myself out, and my stomach was starting to growl. So, I finished my tenth lap, lifted myself out of the water (again, with ease), and headed over to my lounge-chair to relax in the warm sun and dry off. While I rested in the warm sun, I chowed down on a bag of pretzels and watched the other swimmers go back-and-fourth in their lanes. 

When I was dried off enough, I pulled my clothes back on over my swimsuit and left to shower at home. 

At home, Mom practically knocked me over to give me a hug the second I stepped in the front door. 

"Oh! I'm so proud of you! My little miracle child!" She shrieked. 

"Mom, stop." I growled pushing her away, "I get that you're happy. I'm happy too. But-"

"But what?"

"Just... please don't." I stuttered, struggling to find the words to express myself. 

It wasn't that I didn't appreciate my mom's praise. Indeed, she had every reason to be as ecstatic as she was. But, it just didn't sit right with me. In a way, it almost seemed like she was giving my CF and my fear more attention than they deserved. It felt... patronizing... in a way. I wanted to keep my wins, both big and small, largely to myself.

Before I could escape my mom long enough to rush to the shower, my mom's best friend, Priscilla, and her youngest daughter, popped into the living room from the kitchen. 

"Woah..." I started, "Where'd you come from?"

"Oh... we came to stay over while you went to puppy-sit over the weekend!" Priscilla smiled, "I'm so happy for you! You went swimming for the first time in forever, I heard?"

"Uhh... yeah." I smiled, trying to hide my true feelings, "It's been a long time."

Priscilla's daughter was confused, and when her mom and my mom jumped in to explain to her why me swimming ten laps was such a big deal, I scurried away into the bathroom. 

While showering, I really chewed over what it was that was bothering me. Sure, I recognized that I felt my friends and family were giving way too much attention to a condition I wanted nothing to do with, but... why? 

Well... I guess it's simple: I wanted to forget completely about my genetic issues and not give it even the slightest attention.

After all, throughout my entire life up until Christmas of 2019, Cystic Fibrosis continuously stole things away from me, one activity at a time. First, it was swimming, then running, then hiking, then gardening, the list goes on. Why the fuck would I celebrate defeating a condition with the help of an unprecedented drug by acknowledging it? Why would I want to acknowledge something that, at this point in my life, doesn't show up anything like it used to? Why would I want to keep the memory of Cystic Fibrosis alive after all the hell it's put me through? 

Cystic Fibrosis isn't a personality trait. It's a genetic disease. A curse of sorts. Something I never asked for, and something I don't really want to be associated with anymore. Same goes for all of my physical and mental health struggles. Sure, I'm pretty fucked up, but that's not really who or what I am. I am not CF. I am not my fears. I am not my depression. I am not my Autism. I am not any of that. I am who I am because... well... it's just who I am! 

If Cystic Fibrosis was truly a personality trait, then everyone with CF would be very similar to me. But, surprise, surprise, everyone with CF is different from each other, and deal with CF differently. While some people may choose to put a spotlight on their Cystic Fibrosis, and aren't at all shy about it, and are even proud of it, I'm not one of those people.

I just want to get on with life, completely independent of my health issues. I don't want to acknowledge or even think about Cystic Fibrosis for longer than I have to. And, these days, thanks to Trikafta, I only have to pay about two minutes of attention to CF every day. Beyond that, CF doesn't even exist to me. 

When people, especially close friends and family, mention CF just out-of-the-blue, it physically hurts me; it literally feels like biting into a popsicle with sensitive teeth, or like someone blaring a train horn directly into my ears. It instantly pisses me off and causes me to recoil like a rattler. Of course, far too many people don't get it and never will, no matter what I say. So, I just do my damnedest to hide my conditions and my fears from everyone, especially those closest to me. 

As far as myself and my doctors are aware, I am ridiculously healthy, all things considered. I have more physical strength and stamina than every before. I weigh almost thirty pounds heavier than I did in 2019. My liver enzymes, my blood sugars, my Pulmonary function numbers, my grip strength, etc. are all normal and healthy as can be. I literally couldn't be healthier than I am if I tried. It's epic!

So, why would I want to remind myself of my horrific past caused by CF? Why would I want to remember what it was like to cough up bloody chunks of mucus for months on end? Why would I want to remember how skinny, weak, and exhausted I was all the time? Why would I want to remember the pain in my joints, lungs, sinuses, digestive tract, and even in my very bones? Why would I want to remember how frighteningly pale and sunken-eyed I was? Why, on God's green earth, would I want to keep such horrible memories alive?

Obviously, I don't wish to keep my past in the present. I have too much to deal with as-is. Most notably, I'm having to learn how to live, how to dream, how to set long-term goals, how everything from taxes to retirement work, how to network and make friends, so on. Things that I grew up believing I'd never have to worry about, because I'd be dead in my thirties. But, very fortunately, things have made a complete 180. I am no longer going to die in my thirties from a clusterfuck of excruciating lung infections.

Sure, there's a chance I could die in the next ten years, or five years, or year, or month, or day, or hour, or minute, or second. But, the chances of a boulder falling down the mountain and crushing my Xterra while I'm going down the highway, are no greater for me than they are for anyone else. So, unless I do, in fact, get mauled to death by a starving mountain cougar while hiking or hunting, I'm probably going to die in a retirement home sixty or seventy years from now. And, I'm having to accept that and be okay with that, and all the responsibilities a long life saddles one with. 

To be honest, it's a reality I'm still struggling with. It's a reality I can't even begin to wrap my feeble mind around. It's a reality I'm not even sure I'm okay with, because I grew up meditating and accepting death, but never life. I'm okay with the prospect of my own death. I'm not afraid of it. Of course, I'm not looking forward to dying either, as there's still a lot I wish to do and experience. But, to me, death is whatever it just is. 

Life, however...

I don't even know how to even start looking at life the same way I view death. Specifically, a long life. Especially because I basically have nobody to talk to about it. Everyone that I know led normal childhoods for the most part. Nobody I know can fully understand what it was like to be six years old, sitting in a room with one of the top CF doctors in the world, listening to that doctor explain to my parents how short and shitty my life would likely be. Nobody I know understands what it was like to grow up knowing, damn well, that they were gonna die at a very young age in a torturous, cruel way. Nobody fucking understands how that's impacted me over the years, or how hard it is to change one's mindset from, "I'm going to be dead in five or ten years" to, "Holy shit! I'm gonna be stuck on this planet for at least sixty more years!"

For me, not having anyone to vent to who can truly empathize with me, is just as isolating as Cystic Fibrosis itself. And again, that just fucking sucks! 

No wonder I get so damn upset when someone reminds me of my past, when all I want to do is run as far away from it as I fucking can. Maybe sometime in the future, when I'm more relaxed and stable, I'll be able to boast about how I kicked CF's ass. But, for now, I just want to get away from it all. I just want to be truly normal for once, or at least, live as though I am normal. 

I have too much to learn, explore, and understand to keep reverting back to my old "I'm gonna die soon" mindset. Figuring out how to be an adult is daunting for anyone. For me, it feels nearly impossible, and I feel so far behind my peers. 

Logically, I know I will be fully independent sooner than later if I continue to learn and grow as I am. Logically, I know most of my normal peers are in the exact same boat as I am: young, living with their parents, having no idea what they want to do for the rest of their days. However, knowing logically that I'm pretty much right where I need to be as a twenty-one year old, I still feel terribly unstable, uncertain, and quite afraid of what my future may hold. Since very few people seem to understand where I'm coming from, it's extremely difficult and energy-depleting to explain exactly how and why I feel like I do. 

Since Trikafta, it seems like my existential crisis has only gotten worse over the last few years. The more "adult" I become, the closer to independence I come, the healthier I get as time moves on, all contribute to my growing anxiety. Honestly, it's getting to a point where I'm feeling more and more paralyzed by fear and dread as I discover more and more opportunities and possibilities.

What do I mean by that?

Well, five years or so ago, I didn't think I'd go to college. I was too damn sick to even attend high school back then, so why would I ever bother with college if I didn't have the strength or energy to even lift my head off my pillow some days? Also, after suffering through school for eleven years, I was convinced that I was hopelessly stupid and terrible at everything I tried. That was until my CF forced me into homebound, and my teacher (now friend), Eric, actually knew how to teach me in a way that I understood. Over time, I figured out that not only was I not a complete idiot, if I got physically healthy again (and garnered the courage to get over my fear of driving enough to get my license), then I could start attending college. 

Six months after I graduated high school, Trikafta came along and literally gave me a new body; subsequently, a new life. 

Very long story short, in the fall of 2021, I attended and completed my first class of my college career: a tough though rewarding Astronomy course. In those sixteen weeks, I discovered that I was, indeed, cut out for college. Contrary to what I once whole-heartedly believed. 

Not only that, but the math-and-physics heavy course came fairly easy to me. I not only had no trouble following and solving equations, completing our weekly Astronomy labs, or grasping the concepts (though still struggling to actually remember the names of the concepts, though my professor kept the tests open-note so I didn't have to worry so much about that). But, I was actually enjoying myself and having fun with my peers in that class.

My biggest hurdle that semester was my anxiety surrounding all of the new things I encountered, almost completely by myself. That anxiety led to physical exhaustion and burnout. Yet, I survived and passed the class. Not only that, but my confidence was raised from the dead. Ok, I still had (and have) a long way to go before I became fully confident in myself, but at least I'd gotten over my fear of equations longer than y=mx+b. 

So, the following semester, I took on two classes instead of just one, though these two classes had less credits combined than my astronomy course. Yet, I had a much harder time in my Literature class than I thought I would. Why? Because, I fucking hated 95% of the fiction I came across, and socially-speaking, I was the least extroverted and emotional person in the room. Plus, thanks to writer's group, I already knew how to write and critique literature. So, I was really just bored to tears with the material, and wanted my Astronomy class back so I could actually learn something new and interesting, and be intellectually challenged. 

I tortured myself with shitty young-adult fiction just enough to pass the class, all while I wrestled with the realization that maybe the artsy-fartsy side of things wasn't exactly my forte. Maybe, just maybe, a career in the math/science side of things would be better for me than a full-time freelance writing career. That was a wild pill to swallow, considering how my K-12 years went. 

These (and many more) new realizations, huge jumps in progress, and new experiences in the past year have completely stunned me. I am virtually unrecognizable from the sickly little creature I was not even five years ago, and I'm still growing healthier and healthier as time goes on thanks to medical science (which wasn't supposed to ever happen, even with Trikafta). 

Is it any wonder why I'm simultaneously looking forward to my long future ahead and being absolutely scared to death of it? Is it any wonder why I've been so damn anxious and overwhelmed these last few years? Is it any wonder why it took me six years to get back to swimming in fresh water? Is it any wonder why I'm always anticipating the other shoe to drop, even though it probably won't anytime soon? Is it any wonder why I've been increasingly overwhelmed and paralyzed by all of the opportunities and experiences college and getting healthy again have afforded me? 

Of course, unless one's experienced what I have, they wouldn't get just how much work and courage it took to throw myself into the pool for the first time in six years. Nobody in my life seems to understand how insanely difficult and terrifying my first semester of college was for me. They don't get how much practice and discipline it took me to become confident enough to stay home alone for a week, or call my doctors, pharmacists, and health insurance attorneys on my own without an adultier adult in the room with me. And, few people seem to be aware of what I've currently been doing behind the scenes to conquer my next biggest CF-Induced-Fear: Camping. 

After all, if I can conquer my fears of complex math, social interactions with peers, driving in Denver, fresh water, covid, and more, then I can eventually conquer my fear of camping. As a hunter, an angler, an avid outdoorswoman who can summon wildlife like a goddamn fairy princess, I would like to be able to go into the middle of nowhere for a few nights and not be absolutely terrified of every little noise, shadow, and gust of wind. Especially since I no longer rely on 24/7 access to power outlets, refrigerators, cell service, and distilled water to survive.