Note: Oh look! A memoir piece!
Earlier this week, I headed into Home Depot to grab a few things. My grandparents have gotten into gardening now that they’re both retired, and a global pandemic wrecked all their travel plans for the summer. My grandpa wanted to grab some lumber to build some boxes for flowers he wanted to plant, and I wanted to grab a few succulents for my bedroom, as well as some lumber to build another bookshelf. I’ve always wanted to have a few houseplants, but only very recently has my physical health allowed it.
One year ago, going to Home Depot to pick up a bunch of living succulents for my house in the midst of a global pandemic would’ve been unthinkable. Growing up, I avoided house plants like the plague and was told by my doctors to never have them, because the stagnant soil and water harbored all sorts of bacteria that often gave me horrible lung infections, most notably Pseudomonas. But, in late 2019, after thirty long years of research, doctors invented a “miracle” drug called Trikafta, which made me the healthiest I’ve ever been, despite living with CF for over eighteen years.
Before Trikafta, I knew my CF would get worse with age. I saw and felt it progress as time went on. But, when I got on Trikafta, it was like everything was reversed. Sure, I still have CF and have certain pills and treatments I still have to do to keep CF from rearing its ugly head.
However, Trikafta made it possible for me to get off all but one of my physical treatments, halved the number of pills I had to down everyday, made it possible for me to digest nearly everything I ate, which meant I no longer had to shove copious amounts of food down my throat until I was sure I’d see my lunch again. I could eat things packed full of ingredients and calories, so you bet your ass I went to the nearest Mexican restaurant to stuff my face full of tacos as soon as I could eat them without getting super sick for three days. Also, I was no longer in so much pain. My joint pain went away nearly immediately. I no longer wheezed and coughed when I exercised. My sinuses, which had always been sore and tender due to being clogged up with mucus, were cleared out, and the pain went away as my sense of smell returned. I didn’t realize I was missing out on so much until I got on Trikafta.
I'll never forget what it was like to smell for the first time. I've always had a sense of smell, but it was faint. I couldn't smell things, like fires or food, unless I was right next to them. I'd have to bury my face into flowers and shampoo bottles to smell them. But, Trikafta made it possible to smell things like everyone else could. I broke down in tears during one of my first walks in the early spring when things were just beginning to thaw. I could smell the trees, the budding grass, the wildflowers, and even the stagnant pond all at once with ease. I cried tears of mixed emotion. I was so happy I could smell again. At the same time, the veil of CF was lifted, and I was confronted with one of the many things I'd missed out on for the bulk of my childhood. It was incredibly overwhelming, to put it into overly simplistic terms.
I spent my first couple of months severely anxious and depressed. I was so upset over the fact that CF stole my childhood from me. In a way, I was always aware of that. It just wasn’t in my face. But, Trikafta really forced me to ponder that fact. I was full of grief, and went through all five stages of that everyday for two months.
I wasn’t sure if Trikafta would last. I was worried it would wear off as time went on, and I’d be back to square one within six months or a year. So, I tried to live life like I always did, but if I took my usual four enzymes with meals, I’d get really, really sick due to constipation. Now, I only take two enzymes with meals. Sometimes, I even take none at all. Nebulized medications, like Pulmonzyme and Saline, used to really help me. On Trikafta, if I didn’t take Albuterol and Advair before I started those medications, they’d harm my lungs, causing them to constrict a little bit. Pulmonzyme’s main purpose was to thin out mucus so I could cough it out easier, and Saline helped to irritate my lungs a little bit and moisten the mucus, so I’d cough it up easier. But, on Trikafta, there was hardly any mucus for me to cough up, so there was no point in doing Pulmozyme and Saline. My doctors told me only to use those medications if I needed them, such as if I got really sick. Otherwise, it was best to get off them completely.
I had so much energy. I didn’t know what to do with my sudden excess energy. I went from needing several cans of caffeinated soda and a nap everyday, to bouncing off the walls without any of that. My grandpa Lyle likened me to a frolicking spring calf because of the way I was acting. Turns out, my doctors theorized that I was both super energetic due to Trikafta, and I was experiencing Spring Fever for the first time.
Unfortunately, this excess energy led to a lot of anxiety attacks. My body simply didn’t know what to do with all of it. It was a rough couple of months, especially since my anxiety attacks would simply pounce at me at random. It didn’t matter where I was or what I was doing. When my body decided it was time to freak out, it did.
The worst ones tended to happen to me in public. I tried to go for daily walks around the lake at Clement park, or for hikes in Ken Caryl Valley. Unfortunately, my anxiety never failed to hit me during those adventures. They'd begin with a racing heart and the feeling that I couldn't breathe. I'd panic more when I felt like I couldn't get enough air. Then, my legs would get weak and wobbly, to the point I had to lean up against a tree or sit down on a bench to keep myself from collapsing. Then, my mind would race, and my vision would get tunneled. And, everything just went further downhill from there. It was awful. I wanted to hide my anxiety from the world, but at the same time, I wished someone could see me struggling and come to my rescue. Unfortunately, nobody ever did.
One particular attack was worse than the others. I'd jogged a little bit to get around a slow group of seniors which sped up my heart rate. When I slowed to a walk, my heart rate only increased. At first, I tried to ignore it, but pretty soon I could see my heart fluttering in my chest through my clothes. It was pounding so hard against my ribs and sternum that I was in pain. I began to hyperventilate and my vision began to get a little dark in my peripheral. I grabbed onto a metal railing leading up a flight of concrete stairs on the north side of the lake at Clement park, and held myself up there, trying to calm myself down and regain control.
"What if my Pulmonary Atresia finally caught up to me?"
That thought just sent me off the deep end, and I seriously thought I was dying. I reached into my pocket and found my phone to call an ambulance. It was a cold, windy day, so there weren't a lot of people around. Only one person jogged past me, and they were completely oblivious to my suffering. I only got more anxious when my phone refused to turn on. The cold had frozen it to death. So, I was utterly alone, fully expecting to meet my Creator any minute.
But I survived, after about twenty minutes of absolute terror. Slowly, I regained control over my breathing, and my heart rate and vision returned to normal. But, I was extremely tired and weak. My body was wrecked. Carefully, I let go of the railing and stood to my full height. I was shaken up, but okay. I promptly headed back to my truck, started the engine, and waited for my phone to heat up and charge.
As soon as it revived, I called my mom in tears and told her what happened. She told me that she was proud of me for going through such a hellish experience alone, and that she was very sorry I had to go through that. She offered to pick me up, but it would be an hour before she could because she was stuck in downtown traffic. She didn't want me to drive if I wasn't safe to do so. I told her if I was still unable to drive by the time she could get me, that I'd be waiting for her in the parking lot that overlooked the library. Otherwise, I'd send her a text to let her know I was fit to drive again and on my way home.
I sat in my Xterra with the heat turned all the way up, radio softly playing a Tyler Childers album, and my hands on my head as I took in deep breaths and warmed up. I didn't realize how cold I was until the adrenaline wore off. My hands and feet were so cold they were in pain, and my tear-stained cheeks were numb. I don't know how long I sat there in my truck, but I was able to calm down completely and drive safely home. Once there, my mom had a big mug of hot chamomile tea with honey for me in the kitchen, and she talked with me for several hours to make sure I was okay, and to remind me that I was not alone.
When my mom was my age, she went through the exact same shit. She dealt with crippling anxiety attacks in her teens and twenties, which were first triggered by her parents' divorce and my mom's interest in the occult. Her parents' divorce financially and emotionally wrecked her. She barely made enough money to keep the lights on, let alone attend college. Somehow, she found a way to attend college and pay the bills, but it wasn't easy, especially since her parents were barely any help due to issues of their own. Later on, genetic testing concluded that my mom's anxiety and depression were also genetic. Her hardships only exacerbated her anxiety and depression.
Anxiety was something I would just have to deal with, as awful as it was, since both of my parents passed down anxiety-riddled genes to me, and I was going through a lot. But, my mom promised I'd get better eventually, and she would be cheering me on every step of the way. Since it was partially a genetic issue, medication would almost certainly help. Also, I just had to give myself grace. I needed to slow down for now, and just get used to my brand new body. I didn't need to do anything urgently. College could wait. Work could wait. My social life could wait. Everything could be put on pause as I got used to my body and processed all that I needed to process.
Eventually, after consulting with a couple of psychiatrists, I got on an antidepressant called Zoloft that, after several weeks, kicked in and took the edge off. I now had more control over my anxiety. I no longer had unstoppable, crippling anxiety attacks. My coping mechanisms were able to kick in again and bring my anxiety to heel whenever I felt it flare up.
I soon got used to my crazy amounts of energy, and found healthy ways to get it out of my system. I fell in love with cardio exercise, like hiking, running, playing with my dog, using my hands to build things, going to many stores in one day, and so much more. I was finally able to get some spring cleaning done after never having enough energy to do it. As a result, I got rid of six years worth in useless shit in an afternoon, replaced my shitty old bed frame and mattress with brand new ones, and rearranged my bedroom office just for the hell of it. I also spent more time on cooking in the kitchen, since I had the energy to stand longer, and my body could digest my more creative recipes. My mom was pretty disgusted by my love for fried chicken gizzards and bacon-wrapped burgers. But, she was ecstatic that I could eat those things and not suffer from indigestion, even though she gagged at the sight of the gizzards and greasy bacon burgers.
Speaking of which, my bathroom trips were no longer grueling experiences. I could tell my digestive system still wasn’t normal, but it wasn’t completely wrecked like it used to be. Since I could digest my food so much better, almost everything that came out of me was remarkably normal. I no longer suffered from near-daily episodes of diarrhea or constipation. Sure, shit still happened occasionally (pun absolutely intended). But, thanks to Trikafta, diarrhea and constipation became more of a weekly thing rather than a daily thing, which was a massive improvement.
Trikafta also did a lot of very unexpected things for me, and revealed that I had issues that I was only vaguely aware of, or not aware of at all.
My menstrual cycles were always horrible. Ever since they started, they hurt like absolute hell. I knew it wasn’t normal, but there was nothing I could do to mitigate their severity. At the start of every menstrual cycle, I would get really, really sick. My abdomen and thighs would be so sore that I could do nothing except curl up in a little ball and cry for part of the first day. Ibuprofen only barely eased the pain. But, for the most part, I’d just be curled up in pain, counting down the minutes until it would diminish for me to get up long enough to eat or shower, before they hit again.
My doctors feared I had Endometriosis, or cysts on my ovaries. But, Trikafta revealed it was a CF thing caused by a massive buildup of extra sticky mucus. My fallopian tubes and cervix were full of mucus, so my body would have to push extra hard to expel the egg and blood that filled my uterus every month. I didn’t realize that the mucus discharge I dealt with daily was also abnormal. I was just too afraid and embarrassed to really mention it. But damn did Trikafta clear me out!
Four days into my Trikafta-induced clean-out, I was in the shower when about eighteen years worth in mucus gushed out of my lady parts. I had no idea what the fuck was happening! Understandably, I panicked, but there was nothing I could do but stand in the shower in shock and horror as it all happened. As soon as it ended (which took a good ten minutes or so), I got out of the shower, dried off, got dressed, and called my grandma into my bedroom. I told her what happened, and she just smiled and squeezed all the air out of my lungs.
“You’re healing!” my grandma squealed as she held me in a bear hug, “It’s a miracle!”
Several months later, my doctors told me I could have my own kids if I wanted to, now that my uterus was cleaned out. They had eight patients at my hospital who spent years trying to get pregnant but never could. But, when they got on Trikafta, they were able to get pregnant without an issue, and all of them gave birth to healthy, normal babies. I never was interested in having kids. But, perhaps in the future, that will change. Also, I haven’t dealt with severe menstrual cramps or abnormal discharge ever since that incident in the shower four days after I took my first dose of Trikafta.
Suddenly, I was free from the pain CF put me through for most of my life. I no longer had to worry about what I was eating quite like I used to. I no longer spent the beginning of my monthly cycle curled up in pain. I no longer had to shove extreme amounts of food down my convulsing esophagus until I was sure I'd puke, only to suffer from painful indigestion hours later. I no longer woke up at night shaky and weak from low blood sugars. I no longer fought so hard for air. I no longer had regular headaches or nosebleeds from sinus infections. I no longer suffered from joint pain. Sure, I'd still deal with unique health issues for my whole life, but they'd be occasional rather than daily. For the most part, I was free from the chains of Cystic Fibrosis for the first time.
All of this freedom was too much for me at first. So many opportunities opened up before me. I no longer lived in the shadow of death, so I could actually take my time instead of rushing through life. I grew up being told that my life would be significantly shorter than my peers’, and my quality of life would be too horrible for me to hold down a career. But, Trikafta changed all of that. Suddenly, I would live just as long as my peers, and be healthy enough to hold down almost any career I wanted.
My midlife crisis at eighteen was now a typical identity crisis. I had a lot of years ahead of me before I went through my actual midlife crisis. I had time to slow down and screw around a bit. I had the time and energy to attend college in-person and go to work at the same time. I could maintain relationships without fear of my condition getting in the way. I was no longer limited to working a shitty office-style job at home. I could do literally anything. Well, for the most part anyway. I couldn’t do anything that involved deep-sea diving or working with dangerous contagious diseases. But, I could do anything else. It was up to me to choose what I wanted to. The options were endless.
I wasn’t ready for any of this. I didn’t believe Trikafta would make my life much different. Its cousins, Symdeko and Orkambi, did great things for me, but my life was still relatively the same while I was taking them. But, Trikafta blew all of my expectations out of the water, and changed my life in tremendous ways! I was literally living in a new body that worked almost completely normally! How crazy is that?!
But, with the good, came a lot of hardship too. Due to the grief over my childhood and extreme, rapid changes, I slipped into a deep depression. It was all too much for me to cope with, and I mentally shut down.
It felt like I spent every day wading through molasses. It became very difficult, if not impossible, for me to think clearly or focus on anything for long. I spent a lot of my time just staring blankly into space, feeling and thinking absolutely nothing. It was scary. I seriously thought I was descending into lunacy. In desperation, I told everyone in my immediate circle what was going on with me, hoping they knew what was wrong with me and how to help me before I reached a point of no return. I really didn’t know what was wrong with me. I’d dealt with depression before, but it was nothing like I was currently experiencing.
My therapist bluntly told me that I wasn’t going crazy. I was perfectly sane. I was just in a deep state of depression, which was entirely understandable and very fixable. She expected that would happen to me after going on Trikafta, and told me she’d be much more concerned if I didn’t fall into that pit of depression upon experiencing all the life-changing effects of Trikafta. She knew I was riddled with grief and anxiety. I was grieving the childhood CF stole from me, and terrified of what the future had in store for me. She also knew exactly how to help me. It would take a long time, but I’d eventually crawl out of my pit of anxiety and depression, and my new life could truly begin.
Following my therapist’s advice, I got on medication, developed a stable, productive routine, regularly exercised, kept my house and bedroom clean and organized, and continued to pamper myself with healthy, delicious meals and snacks. Over time, I did feel better. I didn’t get better over night, and some days were way better than others. But, for every step back I took, I took two steps forward. Soon, I could see the light at the end of the tunnel, and got excited to live my life in a completely different body.
The first week while I was on Trikafta, I endured severe physical health issues as my body purged eighteen years worth in mucus from my body, and changed the anatomy of each and every one of my cells so they’d work better. I spent the first two months on Trikafta doing something similar mentally. I was “purging” my past from my mind. I was in the process of being reborn. I had to shed all the old things to make room for the new things. I had to break lifelong habits and replace them with new habits. That was an incredibly difficult process, and is something I’m still dealing with all these months later. But, as soon as I got through the worst of my physical illness and mental illness, words cannot describe the joy I began to feel in my soul, and just how physically useful my body now was.
Almost three months after taking my first dose of Trikafta, I was in Elizabeth, Colorado hanging out with my stepdad, Clarke, and little half brother, Jack, when the first two cases of covid-19 were confirmed in the state. At the time, the weight of the issue hadn’t hit me. I didn’t know the government would soon declare it a pandemic and lock everything down. I didn’t know thousands of Americans would die, and millions more would get infected. I didn’t know the economy would tank, and millions of Americans would be jobless. At the time, a shortage of toilet paper seemed like a much bigger issue than covid, and I was still planning on spending my summer attending an in-person college class, working more in the real estate office, and traveling the country.
That first weekend sticks out in my mind, not just because of covid, but because it was the first weekend I felt genuine joy after months of being lost in a fog of crippling depression and anxiety.
While everyone was in panic-mode thanks to the first two cases of covid in the state, I was racing down country dirt roads on the great plains with the windows rolled down, listening to the radio playing music loudly from my phone, and a shit-eating grin stretched across my face. I felt too restless and adventurous to stay on the mini ranch and play video games with the boys. I just needed to get out, and have some time to reflect as I explored God’s country alone, finally reveling in my second chance at living.
Trikafta truly was my second chance. It reversed years of damage doctors once thought was permanent. It made me healthier than I have ever been before. It defied nearly everything I thought I knew about CF. I thought CF couldn’t be reversed. I thought my physical health would progressively worsen as I aged. I thought nothing would get better. I thought a cure was a far-fetched idea. I thought I’d be dead by the time I turned forty years old. But, Trikafta disproved all of that. Words will never be able to describe how liberating Trikafta was!
Sure, Trikafta isn’t a cure. I still have treatments to do and pills to take to mitigate my condition. I still have some CF symptoms from time to time. I still have some health issues that need to be taken care of. But, Trikafta greatly improved my quality of life, and made me realize that an actual cure may not actually be that far-fetched. Maybe God wasn’t as far from me as I thought, either.
I drove almost two hours east from Clarke’s before I hit the brakes and flipped a u-ie in the middle of a deserted stretch of gravel road. I knew where I was, but at the same time, I had absolutely no idea where I was. I’d been keeping track of every turn I made so I could retrace my path back to the mini ranch. But, at the same time, I hadn’t been keeping track of my mileage, or where I was driving. There were no signs telling me which towns were nearby, because I was on random dirt roads almost nobody drove on. I saw more tractors, ATV's, horses, and dirtbikes than cars on the county roads I drove that evening. But, I wasn't concerned. I wasn't lost. I wasn't low on gas. And, for the most part, I still had cell service. So, while I was alone and in uncharted territory, I also wasn't alone or in uncharted territory.
I was so far east that I could no longer see the mountains. All that was around me was an endless sea of golden prairie peppered with yucca plants and sagebrush, and a wide open sky above painted all the colors of the evening. Every now and then, I caught glimpses of pronghorn and mule deer milling about on the plains in the corner of my eye. I drove over cattle-guards into pastures populated with cattle that chewed their cud while they watched me drive by. I drove by a horse ranch where I could see a couple of paints trotting along the fence in my peripheral vision. I even drove through a creek somewhere when the county road dipped into an ancient riverbed shaded by cottonwoods.
The world seemed to change during my drive back to the mini ranch. The colors seemed brighter and more vibrant than before. I could smell the dust my tires kicked up through my open windows, mixed in with the scent of prairie grass and livestock yards. My music, the wind rushing past my Xterra, and even the noise of my breathing all sounded louder than I remembered them. My mind was reeling with thoughts, and I could feel creative juices flowing through my head again. I felt so alive and well. It was simply amazing.
At some point during my journey back to Clarke’s, still happy as ever, I suddenly felt a completely new and different emotion, or perhaps a cluster of emotions I’d never felt together before. I was overflowing with joy, to the point I just had to laugh, and I felt so loved and at peace too. For the first time in God-knows-how-long, I felt like I could breathe and relax. I also felt like someone I knew, trusted, and loved was in the seat next to me. I knew I was alone, but I’d be lying if I said I didn’t glance over my shoulder a few times to make sure I was alone. Perhaps, for the first time in my life that I could remember, I was sensing the presence of Christ Himself.
I’d only read about that in memoirs, and heard about it from pastors in church and a few of my deeply Christian family members. But, I’d never felt the presence of God before, as far as I knew, until that evening I was alone in my Xterra in the middle of absolutely nowhere, racing the clock back to Clarke’s before my dinner got cold. I’m not yet sure how to describe just how utterly peaceful, loved, and joyful I felt at that moment. It just consumed me.
Of course, almost as soon as I sensed the presence of God, a cheerful bluegrass version of Amazing Grace began to play on the radio, which basically confirmed that I was, in fact, in the deeply loving presence of God. It really gave the famous line, “I once was lost, but now I’m found” a whole new meaning for me. Spiritually, I'd been lost all my life. My childhood faith eventually morphed into atheism. It took me years to truly find my faith in God again, to the point I felt like I could trust Him even if the world was crumbling all around me. Who knew I'd finally find myself in the presence of the Lord at the beginning of a pandemic, after suffering from indescribable hardships all my young life? Who knew my bitter resentment towards God could be instantly revoked in just a few hours by God's infinite love and understanding?
Well, I guess God knew it. He's probably the only One who was certain I'd reconcile with Him. Everyone else close to me was concerned I had turned my back on God forever. They knew I had very valid reasons to. After all, I'd been through some shit no one, especially a little girl, should never have to go through, and I came out of my childhood bitter, depressed, and full of pent-up rage. Not only was it miraculous that Trikafta came out when it did. It was miraculous I even reconsidered my bitter atheism at all, let alone go sprinting back into the wide open arms of the Lord, finally craving a relationship with Him, and fully trusting Him with the lives of everyone, including my own.
The peace I felt on the way to Clarke’s never really left me. In a way, it sticks with me to this day.
Even as the pandemic progressed, and my mom was sent home from work, my brother was sent home from school, my doctors sent me numerous urgent emails and voicemails begging myself and my immediate family to lay low for awhile, stores, businesses, and churches all shut down, and the number of cases both in the state and the rest of the country rose exponentially, I felt an underlying sense of peace during all of it. Sure, I still had my moments of anxiety and panic, but they were short-lived, and I soon found myself in prayer, bringing the constant underlying sense of peace to the surface. For the first time, I felt like I could truly trust God, and took the pandemic as the ultimate test of my faith. None of the bad news really shook me. I just leaned into God, asking Him for strength and peace as the pandemic got worse. For some strange reason, I just knew everything would be okay in the end. That reassurance felt Divine. Almost like the Lord Himself was telling me everything would be alright.
I was still very new to the faith. At least, I was new to the faith I now had. My childhood faith in God was nothing like my adulthood faith in God, if that makes any sense. I still believed in the same roots as an adult that I did as a kid. I still believed Jesus Christ was God in the flesh, and He died on the cross for our sins, and then rose from the dead three days later. But, that was the only thing I kept from my childhood faith. Everything else was new to me, from the way God and the world worked, to the reasons why the world was such a mess, to how we should approach and trust God, and how we should hang out with other believers and non-believers.
Unlike most of my family, I wasn’t afraid to get pissed at God. I wasn’t afraid to hunt down the biggest, scariest, possibly faith-ending questions and seek answers for them. I wasn’t afraid to disagree with and challenge other Christians, or atheists, or religious non-Christians. I fully accepted that I was a flawed human being, and I needed to be super careful about judging other people, if I did so at all. I fully accepted that I still had a lot to learn, both about God and just life in general. But, best of all, I felt like after all I’d been through, am currently going through, and will go through, I could trust God fully, and nothing would break my trust.
I really don’t know where I’d be right now if I didn’t have faith in God or science. I fully trust God, just like I fully trust science. As the pandemic progressed, I only listened (and still listen) to two things: God and science. God says everything will be okay no matter what. Even if I got the worst case of covid and died a horrible death, everything will be made right in heaven. As time went on, and I lived my life exiled from the world at home, science caught up to God in some ways. I was terrified, but became less so as more people with CF caught covid, and 95% of them made full recoveries. Those on Trikafta did especially well with covid! Still, I wasn’t gonna take any chances. I needed my doctors to give me the green light before I went anywhere.
While I waited for my doctors to tell me I could go places again, I stayed at home except to take part in socially-distanced outdoor activities. I thought I could stay home easily, since I basically lived in quarantine during the last three semesters of high school with ease. But, during the pandemic, I had lots of energy, when I was running on fumes throughout the last year and half of high school. I was no longer like a hibernating winter bear. I was like a caged tiger ready to rip someone’s arm off just because I could, and everyone who spent more than two minutes talking to me could tell.
My mom and little brother did their best to keep their distance from me, and made sure I had unlimited access to my truck so I could drive into Ken Caryl Valley and go hiking to get rid of some of that excess energy. The foothills were basically my second home for awhile. I had the energy to hike those trails with ease, when just months before, I usually got too exhausted and lightheaded to enjoy my time in the foothills and mountains. Not only could I slowly wander up and down the trails, taking in all the sights and smells, I could actually sprint up and down them with ease. When I wasn't taking my time to immerse myself in my surroundings, I loved to challenge myself by charging up steep trails and leaping onto and over huge boulders that sat near the trails. I even lost my fear of heights for the most part by climbing up a massive red rock formation in the middle of the valley, and sitting with my legs dangling over the edge as I marveled at God's creation.
I was ridiculously able-bodied compared to what I'd once been. Sure, I'll always have health issues caused by CF. My body will never be perfect. But, Trikafta successfully defanged my CF and made it possible for me to truly enjoy life for the first time. I went from limping in pain every time a cold front moved in, to booking it down the mountain to my Xterra as a strong cold front brought heavy rainstorms rushing over the foothills. Unfortunately, I did not make it to my Xterra in time, so I just had to deal with the rain, giddily laughing and howling like a hyena as I sprinted through the mud, because I just could not believe how healthy I now was. Sure, I was wet, but I wasn't freezing to death, gasping for air, or gritting my teeth through pain. I had every reason to be as ecstatic as I was. I just wish there was someone else around besides God to witness that miracle in action, along with many others I experienced on those hiking trails.
After being stuck in the house with the same people and a puppy for over a month, I went to my grandparents’ to help out and get away from my mom, little brother, and the puppy. I loved them dearly, but we needed a break from each other. I took my older dog, Hunter, along with me, because he was stressed about the puppy and needed a break too. Going to my grandparents’ was the best thing I could’ve done for myself and my dog. I needed a quieter place to stay, and I was fairly isolated from town. My grandparents live in far southeastern Aurora, Colorado, surrounded by wide open plains and horse properties. So, I had plenty of room to roam.
My grandparents had seen me plenty of times since I got on Trikafta, but they didn’t see me for very long at a time since before I got on Trikafta. After a few days, they were simply amazed by how energetic I was. My grandparents have always been athletic, but I never really bothered to accompany them whenever they went out to exercise, because I wasn’t able to keep up. But, Trikafta made it easy for me to keep up with them. In fact, they almost had a hard time keeping up with me!
Like a crazed spring calf, I spent a lot of time frolicking around in the fields while my grandparents fished from the reservoir and watched me act like a wild woman from afar. I helped my grandparents with their spring projects, joined their online bible studies and Sunday church sermons, and had long, deep discussions about various topics over dinner and cards. Sadly, I disagreed about matters of faith with my grandparents more than I agreed. But, everything we disagreed on was more or less superficial. We still believed in the same roots of Christianity. We just didn’t agree on things like how God created the world, or whether or not it does any good to pray in public. We made sure to end each discussion on something we all agreed on, along with a prayer, to keep the mood light and cheerful.
I managed to get a doctor’s appointment over the internet successfully scheduled, after months of failed attempts. I spent over two hours online talking with three different doctors. First, my endocrinologist talked to me, explaining that I would need to go into a small in-person clinic to get my labs done. She explained they’d test me for all sorts of things, along with covid antibodies. Turns out, fifty people with CF in Colorado tested positive for covid, fifteen of which were asymptomatic and only found out through the antibody testing. Only two Coloradan CF patients died from covid, but they were already at the end of their lives, so doctors weren’t yet sure if they died from covid or just with it. Nearly everyone else had only mild symptoms, and managed just fine at home.
My heart skipped a few beats as I fought back tears of joy and relief. My endocrinologist was certain I’d be okay if I got covid, but said as long as I was smart and took the right precautions, I’d likely not get it at all! She was also amazed by how well my pancreas was working after I got on Trikafta. My blood sugar issues, as far as I was aware, went away within a couple of weeks of my first dose. I no longer woke up in the middle of the night to raid the snack drawer, weak and shaky from a blood sugar low. And, my first round of blood tests after Trikafta showed that my A1C and blood sugar levels of the day were normal, indicating that my pancreas was doing something right after being next to useless for so many years.
Next, my main pulmonologist called me and included my mom in the call. She, with a stern tone and a smile, explained that I was not part of the “high risk” group, meaning she expected I’d be just fine going to the store and around other people, wearing a mask and carrying hand sanitizer. Even if I got covid, my pulmonologist was confident I’d fare very well with it, and it probably wouldn’t be worse than a bad cold, if I showed any symptoms at all! My mom squealed with joy and I laughed with amazement when my second doctor announced that awesome news! Science finally caught up to God! I would be okay, no matter what, both according to God and science!
Finally, my CF psychologist checked in with me quickly, and she more or less hyped me up to go outside into a public setting. “Get yourself some take-out, and also go to the grocery store within the next few weeks to get a feel for it! I promise, you will be okay.”, my CF psychologist said. She also told me I needed to get a few new pairs of jeans after I admitted Trikafta caused me to gain so much weight (I gained twenty pounds), that I was having a hard time fitting into my jeans! I had to “borrow” a few pairs from my mom, since I no longer fit into my own.
For the record, I’m not complaining about this. I’m still skinny, but not skeletal. I basically have the body of an average woman my height, which means I’m stronger and feel way better. While some people find it aesthetically pleasing for some twisted reason, it’s not healthy to have the body of a Barbie doll. I felt like death when I was that skinny. I was always tired, and I always felt weak. I was also self-conscious about how my skinniness made me look. It wasn't healthy. I could count the bones that made up my body, and I looked muscular even though I didn't do anything that could constitute as body-building.
Now, I look normal, and I feel great! My bones no longer stick out of my skin. A layer of fat now hides the six-pack I once had, yet I'm considerably stronger than I once was. I have the strength and energy to actually work out and stay active. I no longer have to shove so much food down my throat to try to maintain my weight or gain a pound in a few months. My hair has gotten considerably thicker and healthier. My hands are no longer so cold all of the time. And, like I mentioned previously, I can eat things I never thought I could eat again, which has contributed to my weight gain!
That weekend, I called my dad and asked if he wanted to grab some lunch with me. My dad, like me, had been stuck at home for months. I trusted I could see him in-person without a mask on and be just fine. He wasn’t sick with anything, and neither was I. I told him the good news my doctors told me, which put him at ease about seeing me in-person without a mask, and letting me be in the same car as him with the windows rolled up.
On Memorial Monday, my dad drove up to pick me up. It was a somber day for the both of us. My grandpa Bob passed away on Memorial Monday morning two years before. Both Dad and I were close to my grandpa Bob, and his death was rather sudden. We didn’t have a chance to say goodbye or prepare ourselves for my grandpa’s departure, so it was very hard to lose him. But, we both agreed he was in a better place. I’m not sure if my dad’s religious, but my dad affirms that being in a dreamless sleep is better than suffering like my grandpa did. Meanwhile, I know that my grandpa currently has a brand new body in heaven, for death is not like a dreamless sleep. He no longer suffers from the numerous debilitating conditions in heaven he suffered while he was still on Earth. He’s a young, able-bodied man again, skipping around in heaven’s countryside, while Trikafta has enabled me to bound across the plains and in the mountains on Earth in a similar way.
Dad and I first drove south into Parker, Colorado, thinking there would be less people in that rural town. We were wrong. It was business as usual in Parker. People were walking around and congregating in groups, without masks, of course, and the traffic was pretty terrible too. Dad and I cringed. We wouldn’t be stopping for food in Parker! There was no way in hell! So, my dad found a cul-de-sac to flip around in, intentionally doing it fast to drift and cause me to snort up some of the soda I was trying to drink as he did that. I yelped as the soda burned my sinuses, and then immediately told my dad he was an ass for doing that while he giggled like a little girl.
We sped down some back country roads back into Aurora, and then into Southlands mall to find some food. It was much safer in Southlands. There were very few people, and those who were there were in masks. Also, Southlands is an outdoor mall, so nobody was breathing the same air, and a gentle breeze blew down Mainstreet, keeping the air cool and fresh.
It was incredibly eerie. It was just me and dad for most of the time we were there. As we walked, ambient music echoed between the stores that sounded more like it belonged in a halloween haunted funhouse than a mall, and a couple of tumbleweeds bounced across our path as we paced around the mall looking for a place to grab some food. After about a half hour of walking, we got back in the car and agreed to order some hot wings, which we could eat at my grandparents’. I agreed to pay for our food, and called Wingstop to place our order. After that, we just had to sit and wait.
I dreaded going inside Wingstop, even though it would just be for five minutes, and both Dad and I had N95 masks, cloth masks to put over our N95 masks, and hand sanitizer to decontaminate ourselves once we completed our mission. Twenty minutes after placing the order, Dad and I masked up, took in a deep breath, and made our way to the Wingstop. I tried to open the door with just my pinky to avoid touching things lots of other people touched as much as possible, but wasn’t strong enough to put all the weight of the door on just my pinky. So, my dad opened it with his pinky instead, and I quickly whipped out some hand sanitizer from my pocket for the both of us to use.
It was a surprisingly painless experience. There were only three other customers in the restaurant with us, and all of them were wearing masks. The Wingstop employees were also wearing masks, and there was a plexiglass shield between me and the cashier. I gave the cashier my name, and he got our food from the back. As soon as I had the big brown bag of buffalo hot wings in my arms, and my dad had our sodas, Dad and I booked it out of the restaurant and raced each other the short distance to his car. Mission successful!
Several days later, I decided to face one of my biggest fears. I’d wear my N95 into a Home Depot to help my grandpa get some lumber and some plants. He wanted to build some wooden boxes to plant flowers and strawberries in, and I wanted to build another bookshelf since my mom needed almost all of my other shelves for various reasons. Plus, the bookshelves I did still have were a little too small for my taller books and knick-knacks. So, I figured I’d put my energy and creativity to good use by building another shelf for myself. But, more importantly (at least to me), I was going to buy a few succulents and a clay pot for myself. My doctors finally gave me the green light to take care of my own houseplants, since Pseudomonas no longer posed such a serious risk to my health. I could also go swimming in hot tubs and own reptiles and fish as pets. But, before I did those greater things, I wanted to see how taking care of some houseplants fared for me. I’m not exactly known for having a green thumb, so I wondered if I’d kill my houseplants faster than my mom killed hers.
I know to the average person, taking care of a house plant isn’t a big deal. But, for reasons mentioned above, it was a huge deal for me. Per my doctors’ orders, I was going to a busy Home Depot in the midst of a global pandemic to pick up a bunch of house plants for myself. Like I mentioned at the beginning of this piece, this would’ve been unthinkable a year ago. But, thanks to Trikafta, I could now do it. Trikafta truly was an answered prayer. It was nothing short of miraculous!
To be honest, I was really afraid of going to Home Depot. My heart sank as I drove in circles around the parking lot. It took me awhile to find an empty parking spot, because there were so many people there. My grandpa could see the fear in my eyes as I began to question if this was really the best idea, and reminded me to stay calm and that everything would be okay. God was with us, we had masks, and the science regarding covid was amazingly reassuring for the both of us. Also, Home Depot was a huge store! We’d be outside in the garden center for most of the time, and it wouldn’t take us longer than fifteen minutes to find and collect the wood we needed for our projects. “Again,” my grandpa reiterated as we masked up, “We’ll be okay! We’ll be in and out in no time!”
Needless to say, my grandpa was right! We really were in and out in no-time, and came out just fine! I had my succulents and wood to build my shelf, and my grandpa had his flowers and wood to build the flowerbeds. The whole time we spent in that Home Depot, I was scared. But, I put on a brave face and continuously asked God for peace and courage, which He answered. A few times, I re-read the email my doctors sent out after my appointment, which they reminded me that I was not at greater risk of getting a severe covid infection than anyone else in my age group, and that the death rate was well below 1% for those my age. As for my grandpa, he was also not at high risk, even though he’s older. So, I didn’t need to worry about him either.
My grandpa and I came out of that Home Depot triumphant. I had four eight foot by three foot planks of wood balanced on my shoulder, while my grandpa carried a bag full of plants and screws. The wood fit in the car just perfectly, and my grandpa made sure to set the plants down on the floor so they couldn’t topple over as we drove. Once everything was in the car, we got in, went a little crazy with the hand sanitizer, and hauled ass back to the house.
At the house, I transplanted my succulents from their plastic cups into the clay pot. I had to use my hands to pack the soil down and keep the plants upright as I did so. The thought of catching Pseudomonas from that didn’t even cross my mind. I was no longer impacted by Pseudomonas like I once was. What was there to worry about? Truth is, I had to worry about not killing my succulents much more than I had to worry about catching Pseudomonas. Pseudomonas could no longer hurt me. I could still grow it, but I was too strong and healthy to be crippled by it. Trikafta more or less vaccinated me against Pseudomonas, among many other bacterial infections that once posed a severe risk to my physical health.
I still can’t believe how far I’ve come since taking Trikafta. I remember when Pseudomonas almost killed me. Pseudomonas was the reason why I had to drop out of school and finish high school online. Pseudomonas was the reason why I was in so much pain and misery as I fought against it. It ruled my life almost more than CF did! But, then Trikafta came along, very unexpectedly. The FDA decided to expedite Trikafta's approval because its clinical results were so incredibly promising. Trikafta was approved, without warning, literally the same day and hour I sat in my car, cursing God for allowing my CF to progress as much as it did. If that ain’t an obvious answer from God, I don’t know what is. God used Trikafta to reveal Himself to me in the most epic way possible. That prayer ultimately led me into the relationship with God I now have!
While it’s great to have my physical health back, Trikafta gave me an even greater thing: a deep and loving relationship with God.
Yes, life has been rough, and it will continue to be rough. I’ve always hated CF and considered it a curse. CF is not a blessing. I absolutely despise it. But, I can’t deny the obvious fact that CF enabled a lot of wonderful things to happen to me over the years, most notably leading me to an amazing group of friends I’ll probably know for life, and leading me into an even greater relationship with God. It’s been absolute hell, but I consider my time in hell refining.
Everyone who wishes to be with God in the end must be sanctified at first, and the process of sanctification often begins while we are still in the flesh. I consider CF to be the catalyst of my sanctification, and it has also taught me a lot about myself and the people around me. Without CF, I’d be an entirely different person, which is quite scary to think about. Even if given the chance to relive my life without this devastating condition, I wouldn’t take it.
As devastating as CF has been, it is the reason I have faith in God. A few years ago, I never would've imagined that the source of my worst suffering would be the reason I came crawling back to God. Both CF and faith have intertwined themselves into one thing, at least in my view. I became a Christian because I survived CF, and I survived CF because I became a Christian. Nobody could pay me enough to relive my life without CF, because my relationship with God is worth so much more than anything else in existence and beyond.
