Note: Definitely something for the memoir.

Memories of my past life continue to fade with each passing day. They’re becoming fuzzier, harder to recall. Meanwhile, new memories are replacing them. Memories of radically improved physical health. Memories of painless mornings and active evenings. Memories of blossoming friendships and mended family relationships. 

One day, only physical relics may exist alongside few vivid memories: the thirty pound vest machine I’ve had since I was five years old that I used to be plugged into for an hour each day of my life, the large plastic container filled to the brim with nebulizer and IPV machine parts, nasal washers, tubes, wires, and other various medical equipment, the bottom drawer in the fridge still reserved for medication I rarely use anymore but still keep in stock in case I end up freakishly sick. The list goes on. 

I can’t quite put into words just what it’s like to be “reborn” in such a literal sense. My life before Trikafta (AKA my past life) was an excruciating, daily struggle, especially compared to my post-Trikafta life. But, because it was all I ever knew, I didn’t have many complaints. Like everyone else, I got on with life the best I could.

Looking back, I don’t know how I managed to hide my condition as well as I did, or how I powered through life each day, or how I got through school without being held back a year or two, or how I even survived at all. I don’t think anyone has an honest answer to that, other than “I don’t know”. Not even the best doctors in the world for my conditions have managed to explain how I’ve lived through so much, and yet turned out relatively unscathed. 

Personally, I believe my survival is best explained by miraculous jumps in medical science with a shitload of undeserved Divine Intervention. I’m still bitter and pissed about all that I’ve been through thus far, because life is unfair. I was dealt a horrifically bad hand at birth; one that I should not have survived with. And, I still struggle tremendously today. Perhaps my physical health is better since I’m no longer simply fighting for survival, but I’m certainly not cured or 100% symptom-free. My lungs may be spared for now, but my digestive system still struggles often. I’m thankful I can digest more calories, but I still can’t eat more than a small bean burrito or a few strips of bacon. If I dare to eat even just a few bacon strips more, or a slightly larger burrito, I will spend the evening (or early the next day if I’m lucky) annihilating my toilet. 

Mentally speaking, I still struggle tremendously. More so now than I did before Trikafta. There’s the crippling survivor’s guilt, which makes me not want to admit or seek help for my depression and severe anxiety because it makes me feel like I’m ungrateful for a second chance at life (at least, in my mind). So many people with Cystic Fibrosis have suffered and died over the centuries who would’ve done literally anything to be gifted another chance at life. Yet, here I am with that second chance, depressed and anxious as fuck, often struggling to leave my bed some days. 

There’s also the near-nightly nightmares, and the panic I feel when I wake up in the morning stuffed up from seasonal allergies, wondering if it’s really just allergies or something far worse. Thankfully, almost as soon as I wash my face, use my prescription-level nose spray, and take a cetirizine pill, I feel like my post-Trikafta self again. The relief instantly shuts my anxious mind up about the possibility of needing sinus surgery. 

Still, as healthy as I am today, I always have a reason to fret about my health, even though I logically know that there is no reason to be so worried now. Must I still pay close attention, eat right, and exercise? Absolutely. But do I need to dust off my old CF vest and nebulizers? Not unless I start to exhibit symptoms of gunked-up lungs. The whole point of the vest and nebulized medication was to thin out the extra viscous mucus in my lungs, and shake it out to be coughed up. If there’s no more extra sticky mucus to thin out and cough up, the treatments do more harm than good.

Since starting Trikafta, I haven’t coughed once except to clear my airways after a drink goes down the wrong pipe, nor have I produced any spittable mucus, or had a lingering taste of infected decay in the back of my throat. My FEV1 (the main number I pay attention to while doing my Pulmonary Function Test, which I can now do at home) is consistently between 115-125%, which is well above average even for someone my size and age without CF. Sometimes, my lung function spikes above 130%! 

Yet, I often don’t feel so great as I did when I first began this miracle medication. Over the last year and a half or so, I’ve grown used to my new body. The euphoria of being able to smell a distant BBQ and fresh spring foliage has worn off. I’m no longer excited like a spring calf when I can hike for miles and miles without tiring or getting sore. I’m no longer pleasantly surprised when I wake up in the morning without pain or discomfort. It’s all just… strangely normal now, for lack of a better term. 

Now, I just find obscure, often illogical things to freak out about, which heightens my anxiety and adds fuel to my survivor’s guilt. Thoughts like, “What if I was sent a letter for jury duty, but it went to the wrong address and now I have a bench warrant?” or “What if I have cancer right now, but don’t know it because I’m not going in for a full checkup every three months anymore?” permeate my mind more often than I’d like to admit. Sometimes, I think I must be going crazy or am developing schizophrenia, no matter how often my mental health doctors tell me I just have an anxiety disorder and am not at all losing my mind. 

Sometimes, my heart skips a few beats or feels like it stops. Logically, I know it’s just anxiety. However, my lizard-brain often kicks in and I think, “Oh no. My untreated Pulmonary Atresia has come back to bite me in the ass!”, which of course, doesn’t help make things better. Logically, I know if I can hike and drink caffeine and suffer the physical symptoms of anxiety, my heart probably isn’t gonna give out on me anytime soon. Hell, my resting heart rate is no longer between 100-120 now that I’ve gotten on anti-anxiety medication. Now, it sits somewhere between 69-73 beats-per-minute on a good day, and no higher than 85 beats-per-minute on a stressful day. It only spikes to its previous resting rate if I have a miniature panic attack. Even then, I’m able to regain control of myself very quickly since getting on my tranquili- er I mean- anti-anxiety medication.

Yet, I still struggle with my emotions. Sometimes, I find myself sobbing for no apparent reason. Sometimes, I wake up at two-in-the-morning absolutely freaked the fuck out over nothing. Sometimes, I am unusually angry and irritable, again for no knowable reason. I know these weird emotions are a potent mixture of adolescent hormones, PTSD, ASD, and the uncertainty and terror of my future. Perhaps, with a healthy scoop of internalized ableism and genetic anxiety to go along. But, that doesn’t make things easier to cope with. 

Of course, I do have an extensive arsenal of coping mechanisms I’ve learned over the years. Some are much healthier than others, such as going for a long walk or drive while listening to music, or sitting down to watch a comedic Netflix show or Youtube video. But, sometimes I’ve just gotta curl up in bed with my laptop and a mixing bowl filled with ice cream, and cry it all out while watching a shitty horror movie. Or, if that doesn’t work, I’ll stand in a hot shower and ruminate about all of the times I’ve said, “you too” after the waitress told me to enjoy my dinner.