Note: May or may not be memoir material. For now, this is just a blog. 

It’s difficult for me to believe that I’ve been on this groundbreaking, life changing (and saving) medication called Trikafta for nearly a year. Time has just flown by I guess. However, in these short ten months, so much has changed, and continue to change. Just when I think my body has finally fully adjusted to the medication, something new and unexpected happens. However, for the most part, these new and unexpected changes have been nothing but good news. 

The latest new and unexpected changes have been my growth and appetite. Up until recently, I didn’t really have much of an appetite. Thankfully, I was still gaining and maintaining my weight despite not usually eating more than one meal per day. 

However, about a week after I returned to Colorado from Utah (where I spent the summer), it was like a switch was flipped. I was absolutely starving one morning! I was also somewhat achy, which frightened me at first because I was afraid my joints would start to swell and hurt like they did prior to Trikafta. However, the pain I felt in my knees and elbows was never severe enough to cause me to limp or even slow me down. Also, I was extremely hungry all the time, which was actually quite a blessing. Mom wasn’t sure what to do with our leftover food in the pantry and chest freezer when we left for Washington. Well, all but one tote bag of food was gone by the morning we left for Washington, thanks to me and my massive appetite. 

When I got to Washington and I unpacked some clothes I’d packed just before leaving for Utah, I noticed I could barely fit into many of the clothes I used to wear all the time. Some of my hoodies and T shirts fit snugly around my body, and many of my jeans, PJ pants, and sweatpants barely fit or didn’t fit at all. Either they were too tight, too short, or both! Also, the skinny jeans that once looked like regular bootcut jeans on my scrawny chicken legs, looked like skinny jeans on my now not-so-scrawny legs. However, I gave those away along with my other ill-fitting clothes because I didn’t like the feeling or look of the skinny jeans on my legs. 

I honestly didn’t think too much of it until a few days later when Mom noticed the box of clothes labeled “giveaway”. She didn’t believe me at first when I told her those clothes no longer fit me. After all, she could fit into most of those clothes just fine. How couldn’t I fit in them? I finally had to show her that they didn’t fit me anymore, and my mom stared at me with amazement when she saw just how much I’d grown. Not only that, but when I stood shoulder-to-shoulder with her in front of the bathroom mirror, I was (and am) literally a head taller than her. And, when I stepped on the scale, the thing said I weighed 142 pounds (with a T shirt and jeans on, so I probably weigh closer to 140 pounds, but still)! 

After that, I retreated to my bedroom to meditate on just how much I’ve grown, and to cry a few tears of astonishment. Apparently, I’m not done growing. I’m not sure why I’ve suddenly started to grow again, especially since I “stopped” growing almost two years ago. However, my theory is that now that I’m getting the extra nutrients I need after being deprived of extra nutrients my whole life, my body decided it wasn’t done growing yet. Or, perhaps it has something to do with my genetics. Perhaps I'm just a "late bloomer". Or, maybe it's all of the above. I’m still achy and eating everything in sight, so I’m not sure how big I’ll get. But, at this point, I’m willing to bet I’m about five feet and seven inches tall, and somewhere around 140 pounds. 

As you probably guessed by now, I don’t look anything like the chicken-legged, greyhound-torsoed thing I used to resemble. I can’t see my ribs or my abs anymore. My arms no longer look like spaghetti noodles. My legs no longer look like twigs. My fingers and toes aren’t clubbed like they used to be. My jawline isn’t so pronounced. My eyes aren’t so dark and sunken. And, I actually have a butt for the first time in my life. 

I’m also beginning to get some real muscle (even though I no longer can see my abs, which is a good thing), especially since I’ve been moving around so much lately. Sadly, I’m not ripped. But, I am much stronger and have much more stamina than I used to. I have no trouble lifting multiple boxes of books at once and running them up or downstairs, or carrying large pieces of unassembled furniture in their boxes on my own, or pushing/pulling the completely full trash can, recycling bin, or yard waste can up and down my extremely steep driveway. I can also sprint up and down that driveway multiple times without getting out of breath. 

If I tried any of this a year ago, I would’ve seriously injured myself, or been completely unable to complete the task, all while coughing, wheezing, and snorting like a moose in a wildfire. Yet, today, thanks to Trikafta, I can carry lots of weight rather easily, and breathe without issue. I’m not sure how much weight I can carry, but if I had to guess, I can probably lift close to 90 pounds without too much trouble, which is just incredible to me. 

As far as the breathing goes, my lung function continues to rise even though I no longer do any breathing treatments. My vest, nebulizers, and inhalers are currently sitting in storage collecting dust. Of course, if I get sick badly enough, I’ll immediately get back to my strict routine of breathing treatments. But, right now, my FEV1 lung function (the important one) hovers around 125-130%, which is a record for me (for reference, 100% is baseline average for a person my age and size without CF. Anything above 100% is above average, anything below 100% is below average. My PFTs used to be between 90-100%, occasionally getting up to 110% on my best days). My lung capacity has also increased, likely because I don't have nearly as much mucus built up in my freakishly huge lungs like I did before. I’m sure it’s even higher now. 

It certainly feels strange to be off my breathing treatments completely after relying on them to stay alive for my entire childhood and through most of my first year as a legal adult. A part of me still instinctively goes to the refrigerator every morning in search of my Pulmozyme and Saline, however I quickly remember that I no longer need those things, and instead turn my attention to food. I do have a stockpile of those nebulized medications in the fridge in case something happens that requires me to restart my breathing treatments, but for now, I don’t need them. Sometimes, I question if getting off those treatments was the right thing to do, and I have a nagging thought in the back of my head about the other shoe dropping. That nagging thought always says something along the lines of, “If you just resume your treatments, you’ll stay healthy forever. Otherwise, if you get sick, there’s no one else to blame but yourself, and you should feel really bad about it.” 

It’s a terrible little thought to wake up to every morning, but I do my best to shut it out and ignore it. After all, I’ve been on Trikafta for ten months now, and within these ten months, I’ve only gotten a cold which lasted for three days before going away, and I barely even noticed I had it. Up until I got on Trikafta, I never got over a cold that quickly. In fact, common colds tended to morph into something worse in my lungs and sinuses, which took weeks, if not months or even years to fully recover from. 

Of course, I’m not completely cured. I still take about twenty-five pills per day (including Trikafta), and it turns out I still can’t digest certain things like fast food, food made with lots of spices and fatty ingredients like peanuts or cream, and most junk food (although my diet has significantly expanded thanks to Trikafta). I guess that's probably because my pancreas has been permanently damaged by CF. But, at least I can drink whole milk again and am no longer diabetic.

I’m also extremely wary of the ‘rona, and treat it as if I’d certainly end up in the hospital if I get covid before I get vaccinated for it, even though people with CF seem to actually have better luck with covid than the average person. But, my quality of life is lightyears beyond where it once was, and there are no words in this universe or beyond to explain just how blessed I am to be where I am today. 

There is another side to these blessings, however. I constantly struggle with severe, gnawing feelings of guilt, inadequacy, angst, and fear. I feel incredibly undeserving of such an epic second chance at life. I often think about all the people who would’ve killed for Trikafta or something similar, who passed away before being rejuvenated. And, I feel especially unprepared for my near future. I spent my whole childhood anticipating an early death that never came, and now I’m having to face the terrifying reality of adulthood. Most people tell me I shouldn’t be nearly as afraid of the future as I am, since it’s much brighter than I think it is, and I have plenty of time to adjust to this new reality. But, I guarantee those same people would lose their shit if they got on a medication that made them into superhuman athletes and added another 150 years to their lifespan. That’s basically what happened to me, so I have every right to be petrified of what’s to come, even if my future's so bright. 

I’ve also been quite bitter and resentful lately, especially towards God, and that further adds onto the survivor's guilt I struggle with daily. Don’t get me wrong. I’m ecstatic to be on Trikafta, and I know God’s definitely been working overtime behind the scenes to keep me alive. But, I often find myself wishing I could’ve gotten Trikafta way sooner, or not have been born with CF at all, and then getting pissed off at the horrific reality of my past, which I’ve yet to process. To the outsider, that may just seem like I’m crying over spilled milk, and I should just let the past go and get on with the future. But, that’s just because the outsider doesn’t get it. 

I don’t really know how to explain this anger and bitterness to someone who doesn’t get it. I guess I just feel betrayed. By what or who, I can’t really put a finger on it. But, I figured I could turn to God for answers, and also as Someone to vent to. After all, He is the omniscient, omnipresent, all-loving Creator of all things, and unlike the vast, vast, vast majority of people on this planet, He just might understand where I’m coming from, and know how to help me. 

So far, I haven’t gotten many answers from the Lord. However, I have had a few vivid dreams that have dealt with some of the things I have and been wrestling with in my prayers. As someone who rarely dreams, let alone vividly, let alone about things I’m actually struggling with, I’ve made sure to document these dreams so I can remember them and hopefully understand the message(s) they were trying to convey. After all, there are countless biblical examples of God conveying vital messages to people via dreams and visions. There’s no reason to think He’s stopped communicating with us with dreams, just like there’s no reason to think He’s stopped performing miracles or working through people to make the impossible happen. 

Despite my bitterness towards my past and the Lord, I’m wholeheartedly convinced God had worked through the best doctors and scientists in the world to make Trikafta happen. The more I reflect on it, the more evidence for Divine Intervention I see. As most people know, I'm very skeptical. I have a hard time believing in things I cannot verify with certainty. Apparently, God's well aware of my skeptical nature, and has basically scribbled His name over everything in my past, especially Trikafta.

It’s well known that Dr. Francis Collins, one of the scientists who directed the creation of Trikafta and many other treatments through decades of research specifically surrounding Cystic Fibrosis, is a devout, outspoken Christian. Also, until the last decade or so, the idea of curing or getting close to curing CF seemed to be an impossible feat to most people, including most of us with CF (something, something, Philippians 4:13).

 Not to mention where I was in life in the weeks leading up to the FDA’s surprise announcement. The day I sat in my car, freezing half to death, cursing God out for allowing CF to ravage my body, was the same day the FDA announced that they were approving Trikafta several months earlier than expected and would begin to roll it out to the CF community. While it would be a few months before it was my turn to get my paws on my first box of Trikafta, the very prospect of getting Trikafta was enough to get me to chill out a little bit. Knowing this, it's just slightly difficult not to see God in all of that. 

Now, I’ve been on the medication for almost a year, and like I said, lots of things have changed for me physically, mentally, and spiritually. However, some things haven’t changed because part of me is still stuck in the past, and I haven’t yet found the courage or the will to begin processing my past in therapy. Perhaps, one day when we aren’t living through a global pandemic and I’m not moving around so much, I’ll finally be able to sit down and let myself feel what I felt back when I was the Usain Bolt of dying. But, until then, I’m afraid I’ll just be stuck wrestling with the thoughts, fears, and questions people who know they are dying wrestle with, even though I’m no longer sick or expected to die in my thirties or forties. 

I’ll also continue to struggle with the Lord, much like every Christian and biblical figure has. I wish I could just quit acting like a stubborn mule and just accept the truth of the gospel and do whatever God wants me to do, but that’s not how faith works. It will be awhile before I’m anywhere near like those who have accepted their place in God’s kingdom and are now serving the Lord as He wants them to. I’m still very, very young in the faith, and I still have lots of things to learn and settle with God before I accept my role as one of His servants. Because of this, I’m glad God is the embodiment of patience, mercy, gentleness, and above all else, love. Otherwise, I’d certainly be damned. 

I still don't understand why God has been, and continues to be, so patient with me. Or why He allowed so much suffering and strife in my life compared to most people my age. All I know is that, at the moment, I don't know shit, and I'm deeply scarred by the hell I've been through so far. But, I'm sure this is just a phase I'm going through. After all, I've been grieving heavily since starting Trikafta. I'm just so distraught over the fact that CF more or less stole my childhood, and only now am I able to experience life much like how people without CF do. Sure, I had my good times as a kid, but those good times were always tainted by misery. Only now, after nearly nineteen years, am I truly healthy and free.

So, why am I so upset if I'm healthy now? To be honest, that question isn't easily answered, especially since I don't entirely know why I'm struggling emotionally so much. However, I'm sure there're a bunch of reasons for it.

I know a good percentage of people on Trikafta have reported developing mental health issues like depression and/or anxiety, or their mental health issues getting worse. Perhaps, Trikafta messes with physical things that impact the brain, and it probably messes with hormones too. Since I'm still a young, growing adult with partially genetic anxiety and depression (as well as autism, which makes those issues worse. Turns out, my mom is also autistic and I suspect my dad's on the spectrum too, and both of my parents have depression and anxiety), I know I've been afflicted with anxiety/depression partially caused by physical issues (especially since medication took away my crippling anxiety attacks and made it easier for me to fall asleep at night and wake up in the morning). I wouldn't be surprised if Trikafta has further messed with my anxiety/depression, like it has done for so many others who are on Trikafta. 

I'm also grieving my childhood. I'm healthier than I've ever been before by far. I felt far worse when I was a little girl than I do now as a young adult. I remember spending many miserable days at the hospital undergoing painful tests, hearing scary things from the doctors that I understood just enough to know things weren't okay, seeing my parents cringe, fight back tears, or just break down crying as they watched me suffer, and so much more. I remember being so deeply afraid all of the time, and constantly feeling like death was imminent. I remember what it felt like to be forsaken by God, and leaving the childish faith I had instilled into me by adults who had absolutely no idea what I was going through. That list doesn't even scratch the surface of all the horrible shit I've been through. So, of course, I'm upset, and I have so much to grieve and to process. 

That grief has also caused me to once again get angry with God, since I don't yet understand or have even accepted why things are the way they are. Many people (especially older, conservative Christians) don't think it's right or okay to rage at God. I'd encourage those people to read about Moses and the Israelites, Job, Elijah, David, even Christ. Yes, even Christ got deeply upset at the Father (Matthew 27:46). Clearly, God understands and can handle our grief and rage. He's omniscient, after all. It's not like we can hide anything from Him. So, why not be honest with Him? I know I feel way more comfortable talking to God even when I'm deeply upset with Him, than not praying at all simply because my prayer might come out angry or mean.

At least I'm talking to God and putting my trust in Him, even though I might have an entire graveyard to pick with Him. But, that's okay. God can handle it. I'm certain He's just glad to listen to my angry rants, since it means I'm attempting to get His attention and have a meaningful relationship with Him. I could very easily quit trying to reconcile my life with my faith, and for a time I did just that. Instead, I've turned back to God and am actively working on my relationship with Him. 

Also, I can tell I've been unintentionally pushing people away since I started this medication. I don't want to be bothered when I'm stressed out or upset. Yet, plenty of people in my life don't understand that since those people are drawn to people when they're stressed out. I've certainly been short with people more often than usual and much more irritable. Again, this could be for a plethora of reasons. However, I must (and am) working on nipping my short temper in the bud since my short temper doesn't have anything to do with anyone else. I'm not angry at anyone, as far as I know. I don't blame my parents for bringing me into this world with the issues I have. But, I'm still just angry and upset about what I've been through thus far, which in turn has unfortunately been slowly molding me into someone I don't want to be. 

Believe it or not, as much as I cherish and rely on my alone time, I don't want to become a complete recluse with zero tolerance for human interaction. If anything, I'd rather become the complete opposite of that, although that's not exactly realistic. So, I've been working on finding a healthy balance between being around others and enjoying my own company, while also working on finding healthy ways of coping with my stress, anxiety, and anger issues. So far, besides avoiding people like the plague when I'm pissed for whatever reason, I've found that art, writing, music, video games, and of course, ranting at God, certainly helps tame down my temper before I snap at the next person I encounter. That, and also talking to those closest to me about my temper when I'm not upset has helped them understand, at least partially, what's wrong, and that my problems have nothing to do with them. 

I certainly look forward to the day I finally find peace with my past, and more importantly with God, and am no longer so bitter and angry. But, it will likely take years to get to that point. It might even take a lifetime. 

Again, I know most people have no idea how to relate to what I've been going through, and that's okay. Most people haven't had the chance to get on a pill that adds another century to their lifespans and gives them superhuman abilities. And, many people (in the western world) haven't gone through half of the shit I have. So, of course lots of people might still think I'm just being an ungrateful bastard by being resentful rather than focusing on the blessings. Indeed, I'm blessed, and I certainly feel tremendous joy in my heart knowing that I won't be dead in twenty years (as well as lots of fear, because like most people, I'm absolutely terrified of the future). But, I have a lot to deal with before I can "just be happy". 

Trust me, I wish I could "just be happy". It's not fun to be full of angst and resentment. It's not fun to go through changes like I have been going through. If I had a choice, I'd be joyful and settled, comfortable and confident right this second. But, that's impossible. Certainly, I can (and am) working on becoming content and calm. But, it might be years before I come anywhere close to that goal. In the meantime, I'm just a mess. But, that's to be expected given everything I've gone through and am currently dealing with. 

Note: I wasn’t sure where I should post it, or if I should post it at all. Ultimately, I decided it was important and needed to be shared. I didn’t want to create an entirely new piece for this, so I just threw it here since it’s more or less a continuation of what I was talking about. 

 

Well, it’s official: Trikafta has been shown to impact people’s mental health, so much so that it has been added to the list of possible side effects. Fortunately, less than half of those taking Trikafta have experienced a dramatic increase in mental health issues, but that still means around 45% of people on this medication have experienced some pretty severe side effects associated with mental health. 

Anecdotally, I’ve heard about people who have never struggled with depression or anxiety before who started having anxiety and depression symptoms almost as soon as they started taking the medication. There are also lots of people who have experienced their existing mental health issues getting worse. Many people have gotten hit so hard with these mental side effects that they’ve attempted suicide, had psychotic breaks, been just as sick on Trikafta as they were without it even though their PFTs and weight gain have improved dramatic, and more. All of which have led doctors to significantly reduce the dose of Trikafta, or take patients off it completely. 

Thankfully, while I have been hit pretty hard with these mental health side effects, I’m a pretty far cry from having suicidal thoughts or going insane. But, that’s about the only good things I can think about when it comes to my mental health. Everything else sucks major ass. I have all the classic symptoms of anxiety and depression, as well as many symptoms of both that I didn’t really think were symptoms. 

For instance, I often get hit with sudden waves of sadness or tiredness at random for no discernable reason, and seem to bounce from not being hungry at all, to being like a spring bear in a bakery. Some days, I wake up in the mornings without issue. Other days, I sleep through my alarm and well into the afternoon. I also get hit with sudden waves of inexplicable anxiety. I no longer seem to have major anxiety attacks like I had in January/February. However I do become extremely restless and irritable, and if there’s clutter on the kitchen counter or a stack of books on the shelf that are lopsided, I have to make things look right again before I feel better. I guess I am still having anxiety attacks, just a different type of anxiety attack that’s unlike the classic “holy shit I’m dying” anxiety attack. 

Worse yet, I’ve lost a lot of interest in things that I used to be obsessed with. When I first moved to Washington, all I wanted to do was go fishing. Now, despite having all the time in the world to go fishing, and being pestered by my mom to go fishing, I don’t have the will to do it. The desire to fish is there. But, the will to pack my fishing gear in the truck and drive to the fishing pier is not there. Same goes for lots of things. Hiking, walking the dogs, going to the beach, working on my paintings, writing. You name it, I’ve either lost interest in it completely or am struggling to maintain my interest in it. 

Basically, I have only the will to do basic necessities at this point. I feel pretty awful, and I’m not entirely sure where these terrible feelings are coming from. I know some of it must be biological. Every single one of my parents and grandparents and great-grandparents, have suffered from and continue to suffer from anxiety and depression. I’m sure every single generation before me in my family lineage has suffered from anxiety and depression. In a way, it’s comforting to know that my parents can empathize with my issues, although not entirely. My grandparents deal with their issues in much different ways than I do, but that’s mostly because of how they were raised. So, it’s not like I’m going through this entirely alone. But, damn, do I feel alone!

Also, like I said, it’s been confirmed that Trikafta can mess with one’s mental health in biological ways. So, there’s that. 

I’m pretty sure being quarantined since early March hasn’t been good for my mental health either. I could go on and on about how old things have gotten since March, but I’m sure everyone knows how I feel about being stuck inside like a caged tiger, since they’re also stuck inside like caged tigers. 

Before someone starts asking me if I’ve tried XYZ to combat depression, I really have. I’ve done pretty much everything I could think of, right down to buying an artificial sunlight lamp to use when it’s cold, dark, and raining outside. I’m medicated. I’m supplemented. I’m active. I have a routine. I take care of myself and my space. I meditate in prayer. I’ve even found that listening to Gregorian chants or piano music on Youtube while reading a good book really helps calm down my anxiety when I’m having a particularly rough time (although, listening to piano music just makes me miss playing my piano back home). But, my depression still rears its ugly head when my anxiety is absent, and vise versa. The worst is when both my anxiety and depression flare up at the same time, leaving me feeling like I’ve been hit by a pickup loaded down with cinderblocks. 

I really hope my depression and anxiety will diminish once I get out of quarantine and things return to normal. However, judging by how horrible my anxiety was prior to March, I’m deeply afraid my mental health will be just as bad when I’m back to normal life. Perhaps, I will have to get off of Trikafta for awhile, or at least diminish the dose, if things don’t get much better, or God forbid, worse. 

I don’t want to come off of Trikafta. It has given me my physical health. It prevented me from being absolutely decimated by pandemic-related anxiety. It has given me a second chance at life. But, a growing part of me wonders what’s the point of being on Trikafta if I’m just gonna be mentally struggling like this while on it. I know getting off Trikafta wouldn’t solve the bulk of my mental health issues, since I’ve dealt with anxiety and depression my whole life thanks to genetics and Cystic Fibrosis. But, I hate being distraught like this over things most people don’t get. People could understand having anxiety and depression due to the fact that without Trikafta, I was destined to die a horrible death in my forties. But, those same people don’t understand how I could be anything but overwhelmed with joy now that I’m expected to live as long as my peers. 

My prayers have become much more desperate in recent weeks. I’m terrified of the future. I’m terrified of my mental health deteriorating. I’m terrified of being isolated from the world any longer. I’m terrified of losing friends and family to covid-19. I’m terrified of getting covid-19 myself and possibly losing all the physical progress I’ve made while on Trikafta. Yet, there’s nothing I can really do about any of that, except pray, I guess. As my prayers become more desperate, cases of covid rise, the government tightens stay-at-home restrictions, people I know and love fall sick, my depression robs me of the will to do something I previously enjoyed doing, my anxiety causes me to spend hours everyday pacing around my house and rely on medication to sleep at night. Right now, I’m in hell, as I’m sure many of us are. 

However, something’s different this time. I don’t feel very far away from God. In fact, I’m closer to Him than ever before. Lately, I’ve been having very vivid dreams that seem to be responses to my prayers. I have at least a few dreams per week regarding my faith, and all of them are vivid and memorable. As someone who rarely dreams, let alone has memorable dreams, this is huge. I’ve made sure to document every one of these dreams in as much detail as possible, and have even spent some time sketching the landscapes of these dreams. Sure, I’m aware these dreams could just be the product of my unconscious mind, and not from God. However, I’m quite convinced these dreams are directly from God just due to the fact that I haven’t had dreams like these before (and yes, one of these days I’ll get around to putting these dreams together in a document and sharing them with others). 

As much as it feels like I’m casting prayers into the void, I’m not. God hears every prayer I cast to Him, regardless if I speak it aloud or say it silently in my head. Whether or not He responds to my prayers, and how He responds to them, are up to Him. But, I wake up feeling fresh and comforted whenever my faith ends up being the center of a dream. At least I know God is there, and He is listening, and He cares. 

In a way, knowing God is there and is listening to my prayers has helped with my mental health issues. Of course, neither prayer or seemingly getting a response to those prayers cure my mental health issues, or even put a dent in them. But, there is lots of comfort to take in the fact that God is there, and He cares about us, and hears our prayers. 

Note: This is another one of those blogs that isn't complete enough to be a piece of its own, but is still very important and relevant to my previous posts in this piece.

 

At this stage in my life, and the pandemic, I’m no longer totally indifferent, or deathly afraid, or very sad, and I’m certainly far, far, far from any sort of joy. I’m all of the above and angry. No, pissed. No, indignant. No, that doesn’t even begin to describe how utterly enraged I am. 

Unless you’re literally a cave man, you know what’s going on. 

It’s getting rough out there. My country’s getting absolutely decimated by the pandemic in more ways than just by infections. Driving around the city, and even in my own little town, I’ve never seen so many “sorry, we’re closed” signs and boarded-up businesses. At my local grocery store, the toilet paper, canned and frozen foods, and bottles of water are once again nowhere to be seen. The roads are once again eerily empty. And, if things get any worse, I won’t be able to see my doctors in-person, even though they require me to get a covid-19 test before going into the hospital for more vital tests such as my lung function tests and blood draws. Also, more than a quarter of a million Americans are dead, which is almost one 9/11 everyday this year! 

Yet, more and more people just don’t seem to care. Hell, thanks to our incredibly stupid president, and his administration (which are thankfully on their way out), almost half of the country doesn’t even believe covid-19 is real, and they get a kick out of harassing people for taking the pandemic seriously! Also, my blood boiled when I read that millions of Americans have decided to travel for Thanksgiving to gather with loved ones, despite the pandemic! Seriously, what the actual fuck people?! If we as a country did the bare minimum, we would have this pandemic under control within a few weeks. But, if 40%+ of the country of over 321 million people refuses to even believe covid-19 is real, then there’s nothing we can do except protect ourselves and our families the best we can, and get vaccinated as soon as possible! 

Well, according to lots of people I know, there is one more thing we can do, and that’s pray. But, while I consider myself a Christian and at peace with the “problem” of evil and suffering, which tripped me up for so long, I’m not quite sure how I feel about praying to God during a pandemic. It is true that God is Jehova-Rapha, “The God Who Heals”, and He hears every prayer. But, I’m not convinced God is really swayed by our prayers to do this, that, or the other. I personally believe prayer is just for us as Christians to form a personal relationship with our Creator. But, our Creator’s mind is already made, regardless if we pray or not. 

If God intends to heal someone miraculously, He’ll do it regardless of if someone prays for His help or not. Sometimes God also hears desperate prayers for healing, but ultimately decides healing won’t occur in this realm. This, in my mind currently, is why a proud, edgy atheist can miraculously survive a major car wreck with few injuries, while a young, devout Christain can pass away from cancer despite fervently praying for healing. 

Still, I do think prayer is vital, especially in times like these. I’m deathly afraid of what’s happening, and what seems to be on the horizon. I’ve been having night terrors involving the loss of loved ones to illness, getting sick myself and ending up on a ventilator, getting hit by cars, falling off cliffs, getting swept away in rogue ocean waves, watching someone else I love getting hit by a car or falling off a cliff and being unable to save them, and other things that involve suffering, loss, and death. I truly feel powerless right now, both in my night terrors and in real life. Not only do I feel powerless, I also am powerless. 

All I can really do is protect myself, encourage those around me and those I know and love to protect themselves, and hope everything goes alright. There’s not much more that I can do, especially when someone I deeply care about falls into the trap of misinformation and throws caution to the wind. I guess I can lead a horse to water, but I can’t make him drink. 

These feelings of helplessness, grief, depression, anxiety, and most potent of all, anger, are not unknown to me. This has been my life. However, things are very different now. Before, everything terrible out there seemed to only impact me. Pseudomonas only impacted me. Deadly sinus issues only impacted me. MRSA only impacted me. CFRD only impacted me. Etc, etc, etc. I never had to worry about what may or may not happen to other family members. All I had to worry about was surviving until I could get another lifesaving treatment, which in itself was horrific. 

Nobody, especially a child living in the world we live in today, should have to worry about the things that I had to worry about. And, thankfully I never met another child like myself. The only other disabled kids I’ve ever encountered weren’t really conscious enough to know what was going on. I, on the other hand, knew exactly what was going on with me. No wonder I was such a terrified little girl. 

Now, I’m physically extremely healthy, but deep down inside, I’m still just that terrified, sick little girl. I may not show my emotions very much anymore, but I certainly feel them. Sometimes, my emotions do get the best of me, and mainly manifest as pure terror. For instance, a few weeks ago I was headed to the grocery store with my mom. When we got there, I noticed there were a lot of cars in the parking lot, and many people walking in and out of the store. 

“We’re in Washington. It’s safe! I have an N95 mask and you have your gas mask. C’mon!” Mom said to me, but I refused to leave the truck. 

“No, no, no.” I growled, trembling, “There’s no way in hell I’m going into that store. Let’s get out of here and go somewhere else.” 

“Maya, you’re being ridiculous. It’s the grocery store. Everyone, including us, is wearing a mask. C’mon!” Mom pestered me sternly as she began to exit the driver’s seat. Still, I refused to leave the vehicle, and I was visibly shaking. All I could think about was getting covid from the store and spending time in the hospital completely alone. Staying in the hospital with a loved one by my side the whole time was already a terribly frightening experience. I don’t even want to imagine what it would be like to end up hospitalized now.

I eventually won that battle, and we drove around for some time until we found a much less populated grocery store. However, it’s moments like that that remind me I’m still a scared little girl in the much larger and healthier body of a young adult woman, as much as I try to “act tough” when I’m really very scared. 

No wonder I’m not just scared, I’m absolutely pissed. Oftentimes, fear leads to anger, and anger to hate. Right now, especially right now, I fucking hate Cystic Fibrosis. I fucking hate my hellish past. I fucking hate current events. I am deeply resentful of everything I’ve been forced through thus far, and what I’m currently going through along with the rest of the world. Right now, if I had the choice to snap my fingers and relive my life in a much healthier body, I would. I desperately want to escape this anguishing terror I’ve been experiencing for pretty much this entire year, and especially this fall and winter. I desperately wish I was just another one of those careless fools who thinks covid-19 is merely a cold or doesn’t exist at all. Oh, how blissful that must be.

But, I can’t just snap my fingers and wake up in a body that was never afflicted with the conditions I’ve always had. It’s pointless to fantasize about what my life would be like if I wasn’t born the way I was. For some reason, I was born into a broken body in a fallen world, as all of us are. I just happened to be born much, much closer to death than most people. I’ve been trapped in this prison of a body my whole life, with really no escape. Sure, I’m physically doing extremely well. But, mentally, I’m ruined from my past.

Now, here I am. I’ve made it this far into the pandemic without suffering even the slightest cold, but I can’t recall feeling this afraid and distraught before. Everyday, I pray I don’t get covid-19, and nobody else I know and love does. Yet, things are much worse now than they’ve ever been before. Nearly everyone I’ve physically been around this summer have been infected with covid-19. Lots of my family and friends have gotten sick. Thankfully, nobody has gotten too sick. However, it’s deeply troubling to me. 

I’ve been literally running away from something that has been on my tail this whole time, and now I have nowhere else to run. I’m trapped in Gig Harbor, which is better than anywhere else at this point. But, that damn virus is literally right at my doorstep. I feel like at any moment, I’ll be fighting for my life in a hospital bed completely alone. I’m absolutely petrified and consumed with resentment and anger. 

“Why must it be this way?!” “Why can’t I just get a break for fucking once?!” “Why did this have to happen the year I finally got a second chance at life?!” “I just want to be able to relax! I just want peace! What have I done to deserve this!?”, are just a few things I’ve cried out to God, often in tears as I lay awake in bed in the middle of the night, worrying incessantly about what’s to come. 

Truly, I am once again in hell. It’s familiar, but different. What makes current things different (and harder), is the fact that I’m not the only one at risk right now. Everyone is, especially my older and/or sicker friends and relatives. Not a day or even an hour goes by where I don’t worry about those in my life who are at greater risk of getting severely sick with covid-19. I’m scared for those people. I wish I could just round up all my loved ones and bring them somewhere safe, such as a large cabin in the woods that’s far enough away from society to be safe from covid-19, but still close enough to get everything delivered. But, I can’t. It’s impossible. 

All I can do is stay in close contact with those I know and love, tell them I love them, miss them, care about them, that I need them to be safe and smart, and pray that everyone pulls through this. Beyond that, I can only focus on what I’m doing to keep myself safe, as well as sane. But, I’m starting to wonder if all of these months spent in isolation will be for nothing. Everyday, I grow a little more convinced that I’ll be the next one to get covid-19, and I’ll get it long before I have a chance to get vaccinated.

In less than two weeks, I’ll be going to the hospital in-person to meet my new CF doctor and undergo a few vital tests, even though I’ve begged for a remote visit and to get my tests done elsewhere. I’m almost certain I’m gonna leave that hospital with more than just a paper summary of my visit. 

Fuck, that is terrifying and deeply infuriating.