Trikafta has given me freedom, it has unlocked my future and has given me health that I haven’t experienced since I was a college freshman. In the days after dosing, I was out of the house, able to work, able to travel, and able to go back to school. But you know all that. If you’re on Trikafta, I’m sure you’ve experienced much of the same!
Now that we’re isolating to help flatten the curve, it strangely feels like I am right back to where I was a few years ago. The big difference this time… I feel great. The big similarity… I feels like I am locked behind the front door (I’m not actually locked behind the front door… I have turned into a big hiking guy – a great activity with no one around).
Now I spend most of my days doing a lot of the same stuff I did at my sickest point before Trikfata – playing video games, reading whatever is in front of me, and writing blogs. I am technically on spring break so that may have some to do with it. My virtual schooling begins next week.
Instead of living the life I had been living, though, I again feel secluded watching the world spin beyond the window that hopefully keeps the coronavirus out of my life.
It is, of course, all for good reason. I am not sick. Rather, in some way, solidarity with everyone else makes seclusion seem easier this time around. I feel fortunate that my health is stable in a time when going into a medical center for a check up could be be reckless behavior (it feels weird to write that sentence).
That said, I can’t help but shake the familiar anxiety and stress I felt for so many years. Before Trikafta, the thought of developing a new infection or losing one of the few antibiotics I had left was enough to send my mind down an insufferable rabbit hole. It was a sort of purgatory. I was in a place where a slip in the wrong direction could have sent me solidly into end-stage illness and looking at the possibility of needing a transplant. I still held on to hope, hope that I would be able to break out of that purgatory. The latter is what happened.
I wouldn’t say I am quite back to that point of purgatory, but the thought of needing medical assistance or unnecessarily exposing myself to the coronavirus feels unsettling. In a way, I am grateful for the perspective of having lived through severe illness. It allows me to approach this crisis with tried and proven techniques. I am keeping busy as best I can with work and school, I am looking forward to getting back to some normalcy and I am taking things one day at a time.
I know it’s going to get better and I know we’re going to be able to get there, but the big question of when is what makes this hard.
The other day I was venting to Darcy about when. She reminded me when was a big question I had already lived through… when will things get better? Trikafta solved that when, now we’re just waiting for a new solution for our current problem. Waiting is something I think a lot of us are already used to, and I hope we can all lean on past experience to get us through.
