There’s a little something I’ve been keeping pretty quiet, but today seems like an appropriate time to share it.
I started Trikafta, the newest drug to treat the underlying cause of cystic fibrosis, almost two weeks ago. The emotional roller coaster that ensued is unlike anything I ever imagined! From the moment I found out I’d be starting this drug, the tears have been frequent and plentiful.
In addition to the excitement, there’s something else I’ve been grappling with.
Survivors guilt is something many in the CF community experience. The random and cruel nature of this disease means that someone can do everything exactly right and still become sicker. I’ve often wondered why I’ve done so well when I’ve watched my friends continue to decline.
I frequently think back to a hospital stay during which 4 of my friends with CF and I had a movie night together (spread far apart, wearing masks). We talked and laughed together for hours. It’s one of my all-time favorite memories! But, of the 5 of us there that night, I am the only one still alive.
I have no explanation for this. I don’t know why things happen the way they do. I don’t know why some of us have access to this drug so quickly, while others will have to fight long and hard for it. I don’t know why so many of my friends never got the chance to benefit from these drugs. I don’t know why this disease manifests itself so differently in each person, even those within the same family.
And I don’t know why, amid all of this, I’ve been so fortunate. But I can tell you this: I do not take a single breath or moment for granted.
A friend of mine recently said to me, “gratitude is the answer to so many things,” and I’ve carried those words in my heart ever since.
I’ll celebrate the lives of my friends with gratitude. I’ll laugh without coughing (something that hasn’t happened in years) with gratitude. I’ll live each and every day with a thankful heart. And when things seem too heavy or I start questioning the universe, I’ll remind myself…
“Gratitude is the answer.”