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!
