Today, I’m turning twenty-two years old.
As usual, I am incredibly grateful for having survived this long. I’m still shocked by how healthy and able I am, and how much more progress I’ve made in just the past six months. Well… to be honest, I’m shocked that I’m still here at all, all things considered.
I’m starting to accept that the shock of me miraculously being alive, as healthy and able as I am, will probably never go away. So, I’ve shifted away from trying to “accept that I’ll be here for a long time”, to just learning how to live while being shocked that I’m… well… still alive, and exceptionally healthy for someone with a mile long list of genetic fuck-ups that really should’ve killed me (and nearly did many times) before my first birthday.
However, as grateful as I am to still be alive, and as determined as I am to keep moving forward, I’m also filled with a myriad of mixed emotions I don’t even dare think about bringing up to the people around me (especially my family). Yes, I’m grateful and glad to be alive, and I have no desire to kick the bucket anytime soon, but I’m still scared shitless of the future. I’m still terrified of living, similarly to how most people my age are terrified of dying. I’m still incredibly lonely and struggle to connect to people my age, because there just seems to be a massive gap between myself and them, keeping us from connecting to each other in any meaningful way (what that gap is, I have no idea. I just know it’s there).
And, I must admit, I still occasionally miss the prospect of dying early from Cystic Fibrosis. After all, I spent my entire childhood (and roughly a year of my adulthood) preparing for that very thing. But, now? Now, things are so very different, for the better, of course. Yet, I still have very complicated feelings about being as old and healthy as I am. Complicated feelings I can’t even begin to express to the vast majority of people, but can’t just allow to fester within me, which is why I write them down and discuss them in therapy.
Thankfully, as time goes on, I continue to get better at coping with the fact that I’m gonna keep celebrating my birthday for decades to come. Learning how to live has been extremely difficult, but I’m determined to master the art of living. I’m determined to find out what I’m truly capable of. I’m determined to learn how to create things in life and set long-term goals and aspirations. I’m doing my best to figure out how to bridge the social gap between myself and everyone else, so that I don’t feel so damn lonely and alone all the time. I’m working my ass off to overcome and heal all of my fears and insecurities, so that I can get on with life without spooking at my own damn shadow (which I still do, literally).
The awesome thing is that I’ve made a lot of progress this past semester alone. I’m proud to announce that I’m no longer scared shitless of higher-level math. I’ve successfully grieved and worked through most of those shitty past experiences I had with frustrated, overworked, undereducated K-12 teachers that had no idea how to teach a student like me. I passed college algebra with flying colors (especially considering the class average grade was a 61%, and mine was an 86%), without burning myself out in the process. And, I’m already ready to return to school for the summer, where I’ll be taking on Art Appreciation and Intro to Philosophy (I decided not to sign up for creative writing, because I’m not about to write fiction to keep my GPA above a 3.0).
While it’s okay and healthy to struggle emotionally on my birthday, I still have to celebrate all of the blessings, miracles, and wins that have gotten me to where I am today. As much as I like to argue with Him, I still recognize that God chose to keep me around. For what reason, I’m not sure. Whatever the reason is, I’m just grateful beyond words to be here; alive and well, strong and fit, making progress and learning lots each and every day.
Yes, I’m still downright terrified of the future. I still have no fucking clue what I want to do with myself going forward. I still resent the mile-long list of genetic fuck-ups I was born with. I’m still very pissed off at God for all of the shit I dealt with growing up. I still have a lot to heal from and reconcile. I still have a lot to learn (including how to be nice to myself, because I’m often my biggest hater, and that’s not healthy), and a lot to overcome and cope with.
But, I’m in a much better place than I was just a semester ago, and I hope to be in a much better place in a few months than I am now (and right now, I’m in a pretty damn good place). I’m sure as hell in a much better place today than I was around this time last year. And, that’s something to celebrate with a huge sushi lunch and a couple shots of sake.
Again, I wish I could express these complicated feelings to everyone around me. However, I can’t. My family has been heavily traumatized by my health issues, and trying to get them to fully understand my perspective is… well… unproductive, for lack of better terms. At the same time, I don’t like to stifle the truth either. That truth being that, if not for numerous instances of Divine Intervention and massive recent leaps in medical science, I would be dead by now. The fact that I’m still here today, alive and well, honestly freaks me the hell out in ways I just can’t explain (but wish I could).
Obviously, I’m very glad to still be alive. I just feel completely unprepared to live such a long, fruitful, and healthy life, and not just in a way most young adults feel.
Unlike the majority of my peers, I didn’t expect to live very long. I know I’ve said that many, many times, but I say it because A) it’s true, and B) I still haven’t figured out how to fully express what I mean when I say, “It’s a miracle that I’m still alive.”
The only way I can really express how miraculous it is that I'm still alive, is to tell my story from the very beginning. However, to do that, it would take a whole book. But, very long story short, I grew up being told by my doctors, parents, and every text book and Google search I ever found, that I wouldn't live past the age of 40. However, given my Pulmonary Atresia, and that I was both underweight and borderline diabetic my entire childhood, and I was constantly on antibiotics to fight off lung infection after lung infection, my life expectancy was even shorter.
As my physical health declined, so did my mental health. Being bullied in school by both peers and teachers alike for things I could not control, only made my mental health worse. Throw in the constant family bullshit I often got caught up in the middle of, as well as general bullshit everyone deals with. Again, it's easy to see why it's such a miracle that I'm alive and doing so damn well today.
Nowadays, I'm no longer expected to die at a young age from a plethora of inherited genetic fuckups. Instead, I'm expected to live a long, healthy life. I'm expected to live just as long as my peers. I'm expected to go to college, set some long-term goals, land a career, and start building my own life independently. But, damn... I wasn't at all prepared for this shit. I spent my childhood preparing for an early death, instead of for the long life that apparently lies before me. So, now I feel wholly unprepared for my present and future, and I'm terrified of it all.
That said, I'm still doing my best to figure things out, and learn things I didn't get to learn growing up. I'm just now figuring out how to dream and set long-term goals for myself. Growing up, I didn't ever think I'd live long enough to set any real goals for myself, and I lived entirely in "survival mode". Rarely, if ever, did I let myself think about the future, because in my mind, I had no future. CF was gonna kill me one day, sooner than later, and there wasn't a damn thing I could really do about it.
But, now? Now, things are so very different. So very different. And, I don't know how to deal with that. I've been in college for four semesters now. I've completed over a third of my Associate of Science degree. I'm passing my courses with flying colors, including courses that I absolutely dreaded, like algebra and astronomy. And yet, I still feel no closer to pinning down my major or a career than I was when I was still enduring "the Trikafta purge".
So, what do I do with all of these emotions and worries and fears? What can I do to get more comfortable with the fact that I have a long life ahead of me? Well... to be honest, I don't know. I must be doing something right, considering that college has been going well, and I've been getting more and more independent and confident in myself. But, at the same time, the prospect of having a long, bright future ahead of me just... doesn't seem to compute in my mind (I hope that makes sense).
I mean... I grew up being told by doctors, scientists, my parents, the internet, biology teachers, etc. that I'd be dead by 40. And, that I would spend most of my short life too sick to live like everyone else (which, to be fair, I often was). Is it any wonder why I can't seem to see a long, bright future ahead of me, even though I can logically know that, unless something catastrophic and completely out of my control happens, I will live to die of old age? Is it any wonder why I don't know how to set long-term goals, let alone dream about what I want to do with my life (other than simply survive)? Is it any wonder why I'm so damn afraid of living, after spending my childhood making peace with dying?
Even though my physical body has largely recovered (and, in some ways, aged backwards) from my childhood, mentally, emotionally, and spiritually, I still have a long way to go before I can live a life my body can now handle. By that, I mean I've yet to "grow out of" (for lack of a better term) Cystic Fibrosis. I've yet to gain the confidence and courage needed to become a fully independent adult. Sure, to that, most may say, "Well, every young adult is in the same shoes.", except for, not really.
You see, most young adults and teenagers believe that they are functionally invincible. While they know intellectually that death is a thing, and doing stupid shit to impress their friends isn't a good idea, people my age tend to live as though their bodies are invincible. Same goes for what my peers are pursuing in college. Logically, I know that most people have no real idea what they want to do with their lives. But, emotionally, I can't help but feel "behind" in some way when I run into people who, on the surface, seem certain that they want to pursue X major and work in X field (even though, deeper down they don't know what they want to be when they grow up, either).
In other words, growing up with Cystic Fibrosis has made me an anxious wreck in every way possible. I grew up in "survival mode". I grew up not knowing if I'd survive the next lung infection (and I got lung infections all the damn time). I grew up with hardly any room to focus on anything other than staying alive. I grew up waking at 5:45 every morning to do my CF treatments and take my medications, on top of all the "normal" morning stuff people do. Then, going to school where I'd be bullied for things I couldn't control. Then having to go to the school nurse before every lunch to get another batch of pills. Then shitting my brains out in the school bathroom an hour or two later, because my body couldn't digest the two school lunches I had to eat. Then coming home to do at least an hour of cardio exercises before doing another round of treatments and popping another huge handful of meds. And ending my day at 10:00 PM, where I'd lay awake in bed for hours, freaking the fuck out as I processed all of the pent-up emotion and anxiety from that day.
All while I was expected to be a good student, and to make and keep friends, and to go to family gatherings, and pursue hobbies, and have a good attitude about life. Oh, and also while being expected to raise the alarm whenever I felt abnormally sick, lest I ended up in the hospital to undergo a series of very uncomfortable and invasive tests, so doctors could explain why I wasn't gaining any weight, and why my lung function kept nose-diving, and why my A1C was consistently between 6-8% (which indicates diabetes, by the way). The list goes on.
In short, I lived my life in a constant state of abject terror; just waiting for the day where I'd inevitably inhale too many lung germs than I could fight off. Most people just couldn't tell that something was wrong with me, because getting bullied at school (by both my peers and my teachers) taught me how to act like everything was fine, even though they absolutely weren't. And I only admitted something was wrong when I could no longer climb a flight of stairs without gasping for air.
No fucking wonder I am the way that I am today!
That all said, I certainly have a lot to celebrate and a lot to be grateful for. All those things considered, I've done (and am doing) impossibly well. Not only am I still alive (which, I honestly didn't think I would be by now), but I am about as healthy as a twenty-two-year-old can get. My FEV1 currently sits between 115%-130%, I'm maintaining and even gaining weight. My tolerance for heat, cold, smoke, dust, moisture and other nature-related things that once really bothered me, is now at an all-time high. I can hike in the foothills and the mountains for miles without getting tired or woozy. The list goes on.
Trikafta really lifted the veil for me, in many ways. Prior to Trikafta, I didn't really think I was that sick. Sure, I felt like dogshit most days, but I was still a long ways away from requiring a lung transplant, and so long as I stuck to a super clean and calorie-dense diet, I could stay a few pounds heavier than clinically starving. But, what I didn't realize was just how bad things actually were, until Trikafta came along and completely changed my body.
Virtually overnight upon taking my first dose of Trikafta, I went from being an achy, scrawny, coughy, gassy, sleepy, mucus machine with no appetite, to having the energy, strength, and appetite of a fucking grizzly bear. It completely caught me and my entire family off-guard, but in the best possible way. To say my grandparents were impressed when I devoured an entire salmon, a half gallon of whole milk, an entire bag of frozen veggies, and a glass of eggnog as a dessert, all in one sitting during my first week on Trikafta, would be a major understatement.
Thankfully, that raging appetite eventually wore off, but everything else, from my lung function, to my energy, to my weight and height, to my sense of smell, etc, never stopped improving over time. Sure, my charts have since plateaued a little bit, but my health is still improving with time, almost four years after taking my first dose of that $350,000-per-year medication.
Yes, while it's been nearly four years since I took my first dose of Trikafta, I can't say I've gotten used to it yet. But, I'm working towards becoming a functional, independent adult, free from the shackles of Cystic Fibrosis. Though, I will say, freeing myself from my pre-Trikafta mindset has been... difficult... to say the least. Cystic Fibrosis has been my prison for the vast majority of my life, so far. I grew up with it. I grew up fighting it. I grew up being perpetually sick from it. I grew up being told that, even if I did everything right, and did everything in my power to stay alive by perfectly sticking to an extremely rigid routine designed to keep me alive, I would almost certainly be dead by my 40's. Though, given my health at the time, I was told that I could end up on the lung transplant list much sooner than later.
But, then, literally out-of-the-blue, the FDA announced that they'd approved a medication called Trikafta early, because of how promising it looked in the trials. A few months later, I got my first box of the stuff, which was when everything radically changed in ways I could've never prepared myself for.
Now, nearly four years later, I am still very much petrified. Though, not as petrified as I was when I first began to realize just what Trikafta did to me. Sure, I’m not yet a full-time college student, and aside from the occasional pet-sitting gig, I don’t make any money. Still, I’m four semesters and over twenty credits deep into my associate’s degree, and I’ve passed all my classes, so far, with flying colors.
I’m comfortable calling myself a college student, and I’m starting to narrow down my list of “possible careers”, based on what I can do, and what I think I can tolerate making money off of.
