Twenty years old. Just the thought of turning twenty years old makes me woozy. Yet, I have officially been on this earth for two long decades. I’ve said it once and I’ll say it for eternity; I did not expect to live this long.
While I recognize how blessed I am to still be alive and in good health, I still don’t quite know what to feel about the fact that I’m now twenty years old. It just feels strange, for lack of a better term. Like I’m not supposed to be here, yet I am. I feel very lost in this universe I apparently just fell into somewhere down the line. Almost as though as soon as I died in one universe, my soul just went on into another like I wasn’t on life support twenty years ago, or like I never had Pulmonary Atresia to begin with, or like CF didn’t kill me around my 16th birthday, so on and so forth.
For the most part, I keep this ambivalence to myself, because hardly anyone I know can empathize, let alone just sit down and listen to me think aloud, without losing their shit whenever the truth comes out, “I’m not sure I like that I’ve made it this far.”
No, I am not suicidal. Far, far, far from it, in fact. But, a part of me wishes that the things that should’ve killed me years ago actually did, because I am completely at a loss as to what to do now. Well, I know that college is next. But, what the fuck even is college? How am I gonna survive that?
Unlike my peers, I didn’t have the privilege of being able to plan out my future. I never had the option to just follow the crowd down well-worn paths. Ever since I was very little, I was convinced that I wouldn’t live beyond my teen years. Now, I’m twenty, and I’m not exactly thrilled about that.
Honestly, I struggle to find the words to describe my ambivalence. Again, I understand that I’m beyond blessed to still be alive and in relatively good health, despite the fact that I’ve had to cheat death literally hundreds of times, and I have countless mental scars that should’ve made me literally go crazy. There are many people, places, and things that bring me tremendous joy and purpose in life. Plus, I’m well aware of the numerous opportunities that lay ahead of me in the near and far future.
But, at the same time, I feel like a character in Final Destination. It has made me skittish and cautious to an unhealthy degree. I avoid trucks with open tailgates like the plague for the same reason I book it for my Xterra the second the wind picks up ahead of a thunderstorm. Part of me is convinced that I’m bound to get struck by lightning or annihilated by a loose log if I even slightly test my luck. After all, I seriously shouldn’t be alive. Yet, I am.
Again, it’s really hard for me to put what I feel about my existence into words. My brain just isn’t wired to pick one feeling or emotion out of many, hold it, and then explain it. Especially existential feelings like the one that has haunted me all day. I wish I could encapsulate this feeling of living in the “wrong” timeline, in a way other people will understand. I wish I could switch souls with someone for a day, just to experience what it’s like to live a “normal” life, and they can experience what it’s like to live a life like mine.
For the most part, thanks to modern medicine, nobody can tell that something is “wrong” or “different” about me. Even at home, I have a habit of hiding my medications in places I wouldn’t come across very often except for when it’s time to take them. In a way, now that I’m twenty years old with a healthy body and a mostly content mind, I just want to forget about my shitty genetics. Brush ‘em to the side. Pretend that I don’t have the things I was born with. Get on with life as though nothing abnormal has ever happened to me.
Thankfully, I can do that in some ways. Throughout the day, I no longer find myself constantly fretting about illness or self-care or dying in my 30’s or 40’s. I spend roughly five minutes a day doing things to specifically care for my CF, which has gone from spending an hour each day plugged into the wall, to taking a couple handfuls of medication every morning and evening. Beyond that, I do just get on with life. I do get to forget about what sets me apart from everyone else. I do get to fill my lungs with air, smell the scent of fresh rain and spring flowers, clamber up and around the ancient red rocks in the valley without a care in the world, and simply just exist for once. Exist without chronic pain, or shortness of breath, or coughing, or anything like that.
Now that I am healthier than I've ever been by a very long shot, when someone brings up my past without me first bringing it up, it makes me physically recoil like my ears are being blasted by an air horn. It's hard to put such feelings into words, but if I had to guess, mentioning CF or Pulmonary Atresia to me is like a friend bringing up an abusive ex without "permission", for lack of a better term. CF and PA have inflicted untold damage to my mental health, and it is simply inexplicable how I managed to survive all that practically unscathed physically. Not to mention the depression, anxiety, and existential dread I'm now forced to cope with that my physical health problems definitely exacerbated. It is amazing I haven't gone mad.
Yet, it feels good to be freed from those chains that limited me so much for so long. Even covid is in my rear-view mirror for the most part. But, it also doesn’t sit entirely right with me. I guess that’s just because I was raised taking care of myself and not expecting to live past my 30’s at the latest, until everything changed with Trikafta. Now, with covid out of my way, the opportunities are limitless. Too limitless, in my opinion.
Nearly everywhere I look, there's a door opened that used to be shut. Thanks to modern science, I am now very capable of leading a relatively normal life without too much fear or concern for my physical health. Of course, there are still limits to what I can do, as healthy as I am. I will probably never be able to own or care for birds or amphibians. I will probably never be able to scubadive or explore the ocean floor in a submarine. I will probably never be able to work as a police officer, paramedic, or firefighter.
However, now that I have energy and time that I didn't used to have, I will probably be able hold down a demanding career, retire at an older age, and die of natural causes as a little old lady. No longer do any of my health conditions, mental or physical, threaten to slice decades off my lifespan. No longer do I have to be so insanely aware of the moisture or dust in the air, or whether or not I will be forced to resign and live off of disability due to lung-related issues. That, in itself, is beyond miraculous and absolutely staggering.
In the meantime, while I anxiously wait for college and figure out which state I’ll be living in for it, I’m just trying to take things slowly and as they come. The high-strung workhorse within me isn’t too thrilled about taking things easily. Indeed, I do have an urge to fill my life to the brim with obligations and adventures, but that’s not exactly good for my health. Trust me, I’ve tried it. Never worked out that well.
Perhaps, there’s a lesson I have yet to learn. A lesson in patience and contentment and self-love. A lesson I’ve stubbornly refused to learn. But, a valuable lesson nevertheless.
After all, life ain’t a race. That hot iron brand of time is no longer pressed against my ass, reminding me of my near and imminent death. I’m the first of my kind to be free (not cured, but treated to the point of being able to live as though I’m cured) from the health issues my genetics cursed me with. ‘Tis one hell of an opportunity, that’s for sure! A tremendously overwhelming one, I’ll add. One that I feel greatly unprepared for and unworthy of. But, an opportunity I have been blessed with regardless.