Note: Definitely something for the memoir.

Memories of my past life continue to fade with each passing day. They’re becoming fuzzier, harder to recall. Meanwhile, new memories are replacing them. Memories of radically improved physical health. Memories of painless mornings and active evenings. Memories of blossoming friendships and mended family relationships. 

One day, only physical relics may exist alongside few vivid memories: the thirty pound vest machine I’ve had since I was five years old that I used to be plugged into for an hour each day of my life, the large plastic container filled to the brim with nebulizer and IPV machine parts, nasal washers, tubes, wires, and other various medical equipment, the bottom drawer in the fridge still reserved for medication I rarely use anymore but still keep in stock in case I end up freakishly sick. The list goes on. 

I can’t quite put into words just what it’s like to be “reborn” in such a literal sense. My life before Trikafta (AKA my past life) was an excruciating, daily struggle, especially compared to my post-Trikafta life. But, because it was all I ever knew, I didn’t have many complaints. Like everyone else, I got on with life the best I could.

Looking back, I don’t know how I managed to hide my condition as well as I did, or how I powered through life each day, or how I got through school without being held back a year or two, or how I even survived at all. I don’t think anyone has an honest answer to that, other than “I don’t know”. Not even the best doctors in the world for my conditions have managed to explain how I’ve lived through so much, and yet turned out relatively unscathed. 

Personally, I believe my survival is best explained by miraculous jumps in medical science with a shitload of undeserved Divine Intervention. I’m still bitter and pissed about all that I’ve been through thus far, because life is unfair. I was dealt a horrifically bad hand at birth; one that I should not have survived with. And, I still struggle tremendously today. Perhaps my physical health is better since I’m no longer simply fighting for survival, but I’m certainly not cured or 100% symptom-free. My lungs may be spared for now, but my digestive system still struggles often. I’m thankful I can digest more calories, but I still can’t eat more than a small bean burrito or a few strips of bacon. If I dare to eat even just a few bacon strips more, or a slightly larger burrito, I will spend the evening (or early the next day if I’m lucky) annihilating my toilet. 

Mentally speaking, I still struggle tremendously. More so now than I did before Trikafta. There’s the crippling survivor’s guilt, which makes me not want to admit or seek help for my depression and severe anxiety because it makes me feel like I’m ungrateful for a second chance at life (at least, in my mind). So many people with Cystic Fibrosis have suffered and died over the centuries who would’ve done literally anything to be gifted another chance at life. Yet, here I am with that second chance, depressed and anxious as fuck, often struggling to leave my bed some days. 

There’s also the near-nightly nightmares, and the panic I feel when I wake up in the morning stuffed up from seasonal allergies, wondering if it’s really just allergies or something far worse. Thankfully, almost as soon as I wash my face, use my prescription-level nose spray, and take a cetirizine pill, I feel like my post-Trikafta self again. The relief instantly shuts my anxious mind up about the possibility of needing sinus surgery. 

Still, as healthy as I am today, I always have a reason to fret about my health, even though I logically know that there is no reason to be so worried now. Must I still pay close attention, eat right, and exercise? Absolutely. But do I need to dust off my old CF vest and nebulizers? Not unless I start to exhibit symptoms of gunked-up lungs. The whole point of the vest and nebulized medication was to thin out the extra viscous mucus in my lungs, and shake it out to be coughed up. If there’s no more extra sticky mucus to thin out and cough up, the treatments do more harm than good.

Since starting Trikafta, I haven’t coughed once except to clear my airways after a drink goes down the wrong pipe, nor have I produced any spittable mucus, or had a lingering taste of infected decay in the back of my throat. My FEV1 (the main number I pay attention to while doing my Pulmonary Function Test, which I can now do at home) is consistently between 115-125%, which is well above average even for someone my size and age without CF. Sometimes, my lung function spikes above 130%! 

Yet, I often don’t feel so great as I did when I first began this miracle medication. Over the last year and a half or so, I’ve grown used to my new body. The euphoria of being able to smell a distant BBQ and fresh spring foliage has worn off. I’m no longer excited like a spring calf when I can hike for miles and miles without tiring or getting sore. I’m no longer pleasantly surprised when I wake up in the morning without pain or discomfort. It’s all just… strangely normal now, for lack of a better term. 

Now, I just find obscure, often illogical things to freak out about, which heightens my anxiety and adds fuel to my survivor’s guilt. Thoughts like, “What if I was sent a letter for jury duty, but it went to the wrong address and now I have a bench warrant?” or “What if I have cancer right now, but don’t know it because I’m not going in for a full checkup every three months anymore?” permeate my mind more often than I’d like to admit. Sometimes, I think I must be going crazy or am developing schizophrenia, no matter how often my mental health doctors tell me I just have an anxiety disorder and am not at all losing my mind. 

Sometimes, my heart skips a few beats or feels like it stops. Logically, I know it’s just anxiety. However, my lizard-brain often kicks in and I think, “Oh no. My untreated Pulmonary Atresia has come back to bite me in the ass!”, which of course, doesn’t help make things better. Logically, I know if I can hike and drink caffeine and suffer the physical symptoms of anxiety, my heart probably isn’t gonna give out on me anytime soon. Hell, my resting heart rate is no longer between 100-120 now that I’ve gotten on anti-anxiety medication. Now, it sits somewhere between 69-73 beats-per-minute on a good day, and no higher than 85 beats-per-minute on a stressful day. It only spikes to its previous resting rate if I have a miniature panic attack. Even then, I’m able to regain control of myself very quickly since getting on my tranquili- er I mean- anti-anxiety medication.

Yet, I still struggle with my emotions. Sometimes, I find myself sobbing for no apparent reason. Sometimes, I wake up at two-in-the-morning absolutely freaked the fuck out over nothing. Sometimes, I am unusually angry and irritable, again for no knowable reason. I know these weird emotions are a potent mixture of adolescent hormones, PTSD, ASD, and the uncertainty and terror of my future. Perhaps, with a healthy scoop of internalized ableism and genetic anxiety to go along. But, that doesn’t make things easier to cope with. 

Of course, I do have an extensive arsenal of coping mechanisms I’ve learned over the years. Some are much healthier than others, such as going for a long walk or drive while listening to music, or sitting down to watch a comedic Netflix show or Youtube video. But, sometimes I’ve just gotta curl up in bed with my laptop and a mixing bowl filled with ice cream, and cry it all out while watching a shitty horror movie. Or, if that doesn’t work, I’ll stand in a hot shower and ruminate about all of the times I’ve said, “you too” after the waitress told me to enjoy my dinner. 

I also pray and meditate quite a lot, though I don’t consider most of that exactly spiritual. My prayers tend to be more of angry vents and pleas to God, interrogating Him why He allows so much suffering. Why I was allowed to be born such a genetic fuck-up, and why He seemed to intervene whenever I was nearest to death. Why did He seem so actively interventive in my life, but at the same time, allowed other children afflicted with terminal conditions and injuries suffer and die so quickly and young? I mean, while I was just barely clinging to life as a newborn, a kid in the room next door to mine died after getting hit by an SUV and being in a coma for months, seemingly regaining his consciousness up until a few days before he passed away. Why was that otherwise perfectly healthy kid allowed to die so young? Why did I manage to pull through despite my health circling the drain? 

My mom is beyond convinced God Himself healed me after one of her mystical friends came to the hospital to visit newborn me, and claimed she saw Saint Mary cradling me in her arms while I was gripped by Pneumonia and Sepsis. The day after my mom’s friend had that vision, my stats rapidly improved. Within a week, I was sent home. This, my mom says, is what solidified the existence of God in her mind. As time went on and I grew up stronger and healthier, her faith also further strengthened. Though, I've come to realize that her faith has always been very different from her dad's (my grandpa Lyle) faith. While my grandpa's faith is much more strict and conservative, my mom's faith has always been much more liberal and open. 

My dad, on the other hand, believes I’m just a strikingly abnormal case. “There’s always exceptions to the rule” he often says, “Doesn’t mean there’s a God out there. If there is, He is one sadistic, angry son-of-a-bitch!” 

My dad was a man of faith up until I was born. While he helplessly watched me suffer at the cruel hands of fate, taking turns with my mom to watch me breathe while I slept, a landline phone in his hand just in case my breathing became shallow and/or fast, he lost his once staunch Lutheran faith. After all, in his mind (and often in my mind), if there really is an all-good, all-loving, all-powerful God out there, ruling over the universe which He created by simply speaking it into existence. Surely, He wouldn’t have allowed me to suffer from the things I did (and do), or allow young people to suffer and die from cancer, or allow deadly pandemics to ravage the globe, or sit back and watch as man commits atrocities against man, on and on. 

Now, as a twenty-year-old, literally healthier than I’ve ever been in my life and still improving, I seem to be a near perfect mix of my mom’s Christian faith and my dad’s atheism. I am torn between the two different worlds. My Christian side wrestles with my atheistic side 24/7. There’s also a small part of me that calls itself religious, but not Christian. After all, the Bible isn’t inherent, for it was written by flawed authors and has been imperfectly translated from ancient Hebrew and Greek to modern English, time and time again. How can I trust the Bible (which literally just means Book in Old English, with roots in ancient Greek) more than any other ancient text? I have a long way to go before I find an answer to that question and others like it. 

Yet, for now, I still call myself a Christian. I still pray to the God of Abraham. I am still on the cautious lookout for a sound Christian church. I still own a Bible I read regularly. I am just not yet sure if Christianity is what I truly believe. Hell, I am not even sure if I truly believe there’s a God out there. Most of me is convinced that God exists. But, there still lives an edgy, 14-year-old atheist in my mind that likes to be a smart ass when it comes to Christianity, as well as a pagan (for lack of a better term) who believes that all religions worship and lead to the same Source. Indeed, sometimes I find myself speaking to the wilderness on my hikes as though it can hear me, or my inner atheist will butt in while I’m praying with something snarky like, “If God is so loving, why does He hate gay people so much?”

For now, I don't feel that I'm at risk of losing my faith in the Creator. I just have much to learn about Him, and I'm not afraid to ask questions and seek honest, solid answers to them no matter how tough they may be, or where they may lead. My biggest concern is that I'll come to believe things about God that are simply not true. Christianity claims God is love, justice, kindness, mercy, light. Yet, when I read certain stories in the Bible where God seems to mercilessly annihilate entire populations, or send a couple bears to maul forty-two kids because they made fun of a prophet for being bald, I often question if He really is the embodiment of love and mercy. I am especially bothered by people who claim to worship the Christian God, but live diametrically opposed to the things Christianity claims God is and Christians ought to be. I've experienced much of that abuse and hypocrisy myself, which has unsurprisingly left a very bad taste in my mouth. 

Honestly, I long for community with fellow believers despite my previous experiences with church, but I'm too damn scared to "take the plunge" as they say, and start checking out different churches. The last thing I want is to walk into a church where the whole congregation starts speaking in tongues and flopping on the floor like fucking fish out of water, or in churches where they claim to love others but weave politics and disdain in their sermons, or in churches that preach pure heresy.

Unfortunately, I've personally experienced all of that, and then some, in most of the churches I've been dragged into by my Christian family members. Perhaps, that's why I have such an uncannily keen ability to sense when I've stepped foot into another one of those places, without even hearing the sermon. I guess wolves in wool literally walk differently than those who are genuinely doing their best to be like Christ, and my subconsciousness picks up on that, raising my hackles. 

However, for now, I've put my search for a church on the back burner while I continue to pray and garner up courage. I've instead begun to seek fellowship with others in different spaces, slowly building up the courage and social skills I've lost due to pandemic lockdowns. Most notably, I've started working as a volunteer at an animal shelter, obeying a years' old calling in my heart to do just that. Working with humans (especially strangers) has always been exceptionally difficult and exhausting for me, but I've always been gifted with animals of all kinds (except humans, of course).

Thanks to Trikafta, I've now got the energy to work with animals like I've always wanted to, and I couldn't feel more at home surrounded by dogs, cats, and other pets in need of help at the shelter. Perhaps, my purpose in life at the moment is to serve the Lord by taking care of His precious creatures, and making sure people are either reunited with their beloved pets, or pets find their forever homes.  

Christ told His disciples on the Sermon on the Mount, that the greatest commandment was, and still is, to love. Love the Creator with all of your heart, and love thy neighbor as thyself. Scripture also shows us numerous instances where Christ inserted Himself as the sufferer. In Acts, Jesus appeared to Saul while he was on his way to Damascus to kill more Christians and asked "Why are you persecuting Me?" not "Why are you persecuting my followers?" Similarly, in Matthew 25, specifically in the parable about the Sheep and Goats, the King in this parable (who represents God) says, "Whatever you do for the least in My kingdom, you did for me."

Based on these verses, I believe that whenever I take a shelter dog out of the kennel and for a walk along the banks of the South Platte river, or flick around a feather on a stick for a spunky kitten, the joy those animals feel must also be experienced by God. Perhaps, the very fact that I'm able to work at the animal shelter for so many hours, and still have an abundance of energy to go take care of my own dogs and do things with my family, is an expression of my gratefulness for Trikafta and the life I've been given. Actions speak much louder than words, after all. While I do go on my little tangents about how hellish my life has been, and how I still sometimes wish God just killed me when I was still crippled by illness, my actions scream the exact opposite. 

My brushes with death have made me an incredibly safe, trustworthy, and gentle soul. At least, I've been told as much. While I personally struggle to believe that I have such qualities, others' actions say the opposite. But, that's besides the point. 

What I'm trying to (begrudgingly) say, is that because of all of the shit I've been forced to live through, I've learned that life is valuable yet also extremely fragile. The line between this life and the next is startlingly thin. This knowledge has made me exceptionally cautious and aware in life. People often notice just how cautious I am, and have even made fun of me for it. Yet, at the same time, I'm not afraid to to incredibly risky things; things that even most brazen people wouldn't dream of trying. Why is that? That's quite hard to answer, but I'll try.

I understand the importance of safety, but also the importance of living a full and eventful life. Whenever I ride a dirtbike, I never forgo a snug full-face helmet and goggles, sturdy boots, knee and elbow protection, etc. Yet, I ride like a bat out of hell in the mountains, as to maximize the adventure and thrill of the ride. Whenever I drive my Xterra, I always wear my seatbelt, lock my doors, keep my windows at least cracked open so I can hear the world better, tell people where I'm going and when to expect me back, and drive the speed limit. But, I'm not afraid to drive down random roads to see what's down them, and to test my sense of direction. Nor am I afraid to shift into four-wheel-drive and head up and down some sketchy mountain roads, scaring off every deer and bear within a five mile radius by blasting Slayer and Metallica on the radio (yes, Christians can and do listen to bands like Metallica and Slayer. Don't listen to Satanic Panic propaganda of the 80's that is still prevalent in conservative churches. Listen to that shit sometimes. It's truly art). 

During the worst of the pandemic, I was armed to the teeth with N95 masks, rubber gloves, and hand sanitizer. Yet, I still road tripped across the country several times, visiting with friends we knew had been being cautious as we were, and seeing places I'd never seen in-person before. And, guess what? While we had a few close calls with covid-19, nobody living under the same roof as me got the 'rona before we got fully vaccinated. Now that we've been fully vaccinated, life has basically returned to normal, though I still pay attention to the news and scientists, as everyone should. 

Point is, there's a healthy balance between risk and safety. It's important to not be completely reckless. But, it's equally important that we avoid becoming complete agoraphobic hermits. I fear that had I been born into a "normal" body, I wouldn't have learned that vital lesson. Again, I fear the woman I could've been had I not been born with the plethora of genetic conditions I've been blessed/cursed (AKA "blursed") with. Indeed, I think I can confidently say that Cystic Fibrosis has been a blurse. As much as I often resent it, I can't see myself living without it. 

In a broader sense, perhaps all suffering is "blursed". It largely depends on how a person uses and views their suffering. Some people choose to be entirely cursed by suffering, which is often how militant, Dawkins worshipping anti-theists are born. Some people choose to be entirely blessed by suffering, which is often how toxic faith-healers and motivational speakers are born. But, I think most people (like me) exist somewhere between the two extremes, which is okay! We can be thankful for our suffering and simultaneously resent it.

Personally, as much as I wish I didn't have to suffer the things I did and do, I wouldn't trade my life for anyone else's life. Of course, I'd cure my health conditions in an instant if I could, and get over my trust issues and social imperfections overnight too. But, wipe those things out of my life completely, from my past, present, and future? Absolutely not! 

But, why? Why do I prefer to continue living this life, instead of re-living my life without even half of the challenges that I've been forced to live through? Why do I prefer to live in a world where children die of cancer, and humans can freely choose to do good or bad, instead of in a world where no children die of cancer, and everyone just gets along? Why can't God give humans free will and simultaneously prevent suffering? 

Well, like I said, I believe suffering is a fundamental aspect of existence. Suffering isn't inherently bad or good. It's just a thing that exists. We just perceive it as bad, because in the present, suffering fucking sucks ass in our minds. It is what gives teeth to our depression, anxiety, grief, anger, and all those other less-than-awesome emotions and mental illnesses we all experience at some point in our lives.

But, suffering is also what protects us, forces us to grow and learn, teaches us to not play with fire or intentionally slap an innocent person across the face. It's what gives us a purpose in life; to create, to love, to find and create friendships, to explore. After all, if we never suffered, how would we know what love was. How would we know not to hate? How would we get motivated to learn, grow, and change ourselves and our world for the better? How would we be motivated to work and create meaning? What would we ever even do in life without that pesky suffering? 

Personally, I think suffering is ultimately a very good thing. Given the potential it has to teach us invaluable lessons, force us to better ourselves and the world, remind us that our time on earth is limited and therefore very valuable, and help us form a personal identity and a faith. Now, notice I said "potential". Suffering doesn't always produce desirable results in the end, even for those who agree that suffering is ultimately for good. Just like freezing weather doesn't always produce ice. But, all suffering can potentially lead to good, just like freezing weather can potentially create ice. 

I think it's more or less up to the sufferer to decide if they want to use their suffering for good or not, just like I have the choice whether or not I want to create ice by putting water in the freezer. See what I'm trying to say?

As tough as it is, I try to look at my sufferings in a more meaningful light. That doesn't mean I always try to find the silver lining. Sometimes, I am just too burnt out and exhausted to find the good in every problem, and opt to cry into a bag of gummy bears instead (which is totally okay). But, days, weeks, months, even years later, I often reflect upon the times I was the most miserable and broken with 20/20 vision, where I'm able to see what good came out of my lowest of low days. I've yet to reflect upon a time like that and not see how I was positively impacted by a severely negative situation. That is why I'd rather live in a world where pain and suffering exist, rather than a world without it. 

Without the hell I have been put through thus far, I wouldn't have learned the invaluable lessons I have learned so far. Sure, oftentimes I can be a pessimistic, resentful asshole. But, at the same time, I rarely take even the tiniest things for-granted. There are moments when I'm struck with awe and wonder and gratitude, even while I'm doing the most basic things like washing dishes. Just the other day while I was washing dishes, I suddenly realized just how blessed I was to have dirty dishes to wash! Dirty dishes were a sign that I hadn't gone hungry, and the leftovers I'd put in the fridge for later meant I wouldn't go hungry in the future either.

Beyond that, outside there was a heavy thunderstorm. Yet, despite the rain and wind lashing at the window and thrashing the trees, I was warm, dry, and safe inside my house, where I also had access to clean, warm, running water, electricity, internet, modern amenities like the dishwasher, so on and so forth. Believe it or not, most people in the world lack proper shelter from such weather, let alone have access to clean water, comfortable beds, lights, locks on their doors and windows, cars, books, etc. But, for whatever reason, I had not been born into such poverty, and have instead been born into a lap of luxury according to the world's standards. How amazing is that?!

Let's not forget that I was also born at a time when medical science could save me. Had I been born just ten years earlier, I would've died by now. Sure, medical science hasn't been perfect. I have suffered from major medical mistakes both big and small. But, all things considered, what people much smarter than me have done for me, has been nothing short of absolutely miraculous! I have had the privilege of not just watching medical science smash through one glass ceiling after another, but being able to help science do that! And, do so in record time!

Twenty years ago, my parents were still hanging me upside down and giving me karate-chop massages on my back to dislodge the mucus in my lungs to cough it out. When I was in kindergarten, a machine called the Vest came out that did the karate-chop technique for me instead of my parents doing it. When I was between the ages of four and seven, I was a participant in the TIGER trials, which discovered (quite on accident) that a drug called Pulmozyme was really good at helping clear out mucus by making it less sticky. When I was in high school, I again participated in a phage-virus therapy trial to see if it could combat my Pseudomonas infection, which it did! As a result, Cystic Fibrosis clinics all over the country are investing more and more studies into the phage therapy to combat nasty, antibiotic-resistant bacteria like I had, which in turn is improving the lives of thousands of people just like me! Shortly thereafter, an engineer with Cystic Fibrosis invented a portable Vest treatment, so I didn't have to sit and do nothing for an hour each day anymore. Then, Trikafta came along, just when I needed it most, and holy shit has it been a game changer! 

Notice a pattern in all of that? Because of the suffering I was enduring due to my condition, I was able to help medical science move along tremendously, not just for other people with CF, but subsequently for everyone. Therefore, improving the lives of everyone with virtually any kind of condition or illness, and subsequently making the entire world a safer, healthier place to live. Had I (or anyone else) not suffered, that wouldn't have happened. In fact, nothing substantial would've happened, had suffering never occurred. We'd still be running around naked, living in caves, and eating berries. What kind of life is that?!