The Breakthrough
This longform Atlantic piece: “The Cystic-Fibrosis Breakthrough that Changed Everything” by Sarah Zhang so perfectly captures the whirlwind journey that I’ve been on with my husband’s health over the last four years.
After my third date with Eric, I Googled “cystic fibrosis” and saw that the median age of survival was somewhere around 35 years of age. I somehow overcame my immediate panic about this statistic to go on many, many more dates, and eventually get married seven years later. But I also spent all of those years worrying about his health and the very real prospect of having to take care of him and eventually being alone. The early years of our relationship were really good with occasional health setbacks and frustrations here and there, but as the years went on the setbacks were more frequent and with that, the frustration mounted. A few years before this miracle drug came along, things started to get a little tougher for me, at least, mentally. But then at the end of 2019 Eric took his first dose of Trikafta and life changed completely in both huge and subtle ways. There were new ways of thinking and of seeing our life and future together. And this constant source of stress I hadn’t quite realized was weighing on me so heavily was suddenly and completely gone. It was strange. One day I blinked and all those feelings completely vanished. This is a good thing, obviously, but also it’s very weird to live your life for thirteen years feeling a certain way all the time—I think of it as a kind of constant low-level of stress that occasionally peaks—and then one day to have that feeling just disappear.
Anyways, if these were the emotions I was feeling, you can only imagine what was going on in my husband’s head. The first few weeks after the good news about his health were what we still refer to as our Cloud Nine Days. They truly were some of the best weeks we’ve ever had together. (The coronavirus came along about a month later and kind of put an end to our high-flying days.) But in those days right after the good news, life felt limitless. You would think that after life-changing news like this everything should just be all sunshine and rainbows. But that’s just not really what happens. Such a huge shift in perspective occurs and it’s been fascinating to watch Eric change, grow, and wrestle with what it means to hopefully live a long and healthy life now. I tell him all the time: “You’re just a normal boy now.”
But he’s not normal, not by any stretch of the imagination. And the fellow cystic fibrosis patients who have been on this journey have also ridden the rollercoaster ride of what it feels like to have a death sentence suddenly lifted. This Atlantic article hits all the notes of what it’s been like to live through this experience. It’s an impressive and well-researched piece, and I was surprised by how many old feelings came up while I read it. The feelings of dread and frustration that used to weigh on me all the time crept back in, which isn’t necessarily a bad thing, in my opinion. Those heavy feelings simultaneously made me appreciate every minute of our life together and brought with it an immense amount of gratitude and presence. I think the fact that these feelings were rekindled at all is a testament to Zhang’s excellent writing.
Not long after the good news, I overheard Eric on a call telling one of our friends about his big health breakthrough and he said, “Now I can finally die of something else!” The dark humor and mundanity of that statement makes me laugh, even now. So, if you’re curious to have a glimpse of what life looks like from the very unique perspective of someone who’s newly excited by the uncertainty of their mortality, I highly recommend giving this a read.
