If the cystic fibrosis community lived in one place, the streets would be filled with dancing. Patients and their families are jubilant at the news of early success in trials for multiple potentially life-saving drugs — almost-cures. Alongside thoughts of joy for my friends are thoughts of “what if.”
What if I had held out just a little longer on my old lungs? Would I have gotten an almost-cure?
It’s hard not to think these things.
A close friend told me that my year-long ordeal extinguished their faith in God. They couldn’t make sense of why I went through so much misery yet continue to praise God. Why cling to the one who could have intervened but supposedly didn’t?
I think of biblical Job in all his despair, being told to curse God and die. To give up. Job recognized God as his source of strength and it is because he clung to Him that he eventually was given an even better life than what he had before. Near the end of the Book of Job, he says to God, “My ears had heard of you, but now my eyes have seen you.” (Job 42:5) The true treasure wasn’t the earthly things God gave him, but the idea that he now knew Him. He had an experience that, while terrible, gave him an understanding of God beyond what writings and traditions had offered.
See, if I gave up on God because of my hardships, I really have no doubt that I wouldn’t be here today. It’s a theological myth that “God never gives you more than you can handle.” There are things we can only handle with His help. In the days before my ICU meltdown last summer, I’d nearly given up. The strength I’ve since drawn from prayer and seeing His plan for me unfold step-by-step — a million “coincidences” that stacked on each other and saved me — is inexplicable. And now, I see that God did intervene.
Maybe there’s a cure in the near future. But I saw those CT scans: cavities, literal holes in my lungs. Irreversible scarring. I saw photos of those lungs when they were removed from my body: ravaged, shredded. The damage was done and a cure would not have undone it. Even if the disease was halted, I might have lived longer, but I probably have still been so, so weak and sick. For the rest of my life. That’s no way to live.
Why did God allow the damage to happen in the first place despite my faith? Because I didn’t understand faith. We have this fairytale belief that we can live lazily and expect God to reward us, so long as we pray. No, God wants us to meet Him halfway. He wants us to work for the prayer. While my mom cried at night during her prayers for me, I was neglecting my treatments. God gave me so many chances, so many warnings. But I fell into my bad habits time and time again. I was responsible for my sickness, not God.*
God is responsible for the new life I’ve been given. I shed so many tears over cystic fibrosis. I still cry just as much, but the tears come from happiness. I have never been so happy, even despite my deafness (which hopefully will soon be fixed by cochlear implants). I was in so much pain with cystic fibrosis. More than I even realized. It wasn’t until I tasted what it’s like to have healthy lungs that I recognized how much I’d been missing out on. I told my mom the other day that even if I were to die tomorrow, the transplant was worth it. I was so tired. Now I’m living.
I used to tell everyone that I was 100% confident a cure for cystic fibrosis would come in my lifetime. Maybe a cure will come, it just won’t be for me. But I also feel that I received my own special cure. That while transplant is an illness of sorts, it has nothing on cystic fibrosis. My old English teacher, Mr. Schick, emailed me and asked if I “beat CF.” After chewing on that question for about a week, I feel like I can say, “Yes.” I didn’t just survive. I feel victorious.
I dove into this situation confident that I would have a spiritual transformation. I received physical transformation as well. God did save me. I’d heard of God, but now I’ve seen Him.
*Note: I am not saying every person is responsible for their own sickness. Just in my situation, yes, I claim responsibility. I knew the consequences of inaction in taking care of myself, yet I proceeded.