I got exactly what I’d rage-prayed for on a cold, windy fall day in 2019. The day I shouted at God while I was nearly frozen to death in my car, demanding Him to fix my health problems right then and there, was the day the FDA unexpectedly approved Trikafta for patient use. Three months later, I got my first box of the stuff. A month after that, I went to my first doctor's appointment with Trikafta in my system. The results from that first doctor’s appointment brought everyone in the room to tears, because my stats and blood draw results were absolutely incredible! For the first time ever, I was just as healthy as my normal peers. Healthier, actually. 

Talk about a major medical breakthrough. Or, a cure-lite for Cystic Fibrosis!

But, a part of me felt… bad. And not just because of the survivor’s guilt I felt (and still feel). 

I was (and am) very afraid of my future, now that I was no longer set to die young. I was (and am) completely at a loss of what to do next, now that I had an entire long, fulfilling life to live. Most potent of all, I began to miss the security an early death gave to me. 

Because I anticipated an early death from such a young age, instead of spending time thinking about my future, I spent that time meditating on the fact that I didn’t really have a future. I grew up being told, over and over and over and over again, that I wasn’t expected to live very long. My deteriorating health only cemented the fact that I wasn’t going to live for very long. So, I spent many hours over many years preparing for death; meditating on my mortality to make myself unafraid of it. 

I eventually came to accept the fact that I wasn’t gonna live as long as my peers. Granted, I wasn’t happy about that. I desperately wanted to live and stay as healthy as possible for as long as possible. I did everything in my power to delay the inevitable, in hopes of giving science and God just a little more time to save my life. I ate extremely healthily, I exercised to the best of my ability no matter how I felt, I took all of my medications and did all of my daily CF treatments, I went to all of my doctors’ appointments and did everything they asked me to. I joined a scientific study in which I snorted phage viruses to combat my antibiotic-resistant Pseudomonas infection, when nothing else worked!

I did everything in my power to stay healthy and alive for as long as I could, because I wanted to live. My entire purpose in life was to live just long enough for science and/or God to move in drastic ways, even though I didn’t really believe I’d make it that far (especially when Pseudomonas took hold of my lungs in the fall of 2017). But then… I did. And I’ve been taking Trikafta for three years now. In these three years, my health has only improved. In fact, it’s still improving. 

This is where the complicated feelings lie; in the fact that I’m going to live to die of old age (assuming I don’t get crushed by a meteor). Because, now I’m having to contend with questions such as, “What do I want to do for the next fifty-plus years?”, “What do I want to do as a career?”, “What do I see myself doing in five, ten, twenty years?”, etc, etc. 

And the answer to all of those questions (and every other question like them) is, “I don’t have a damn clue.” 

I don’t know what I want. I don’t know what to do. I don’t know what I’m doing. I don’t know what I’m good at. I don’t know how to set long-term future goals. I don’t even know who I am. I just… don’t know. I’m completely uncertain and petrified by the endless opportunities that lie ahead of me.