Columns

It’s hard not to dwell on all of the future plans I might have had if cystic fibrosis (CF) hadn’t entered my life. Things seemed limitless as a child. If you had asked me what I wanted to be when I grew up, I…

I don’t want to talk about it anymore. I’ve gone from being an out-and-proud chronic illness advocate to someone craving something akin to a total cystic fibrosis blackout. I believe in the power of our voices and the importance of speaking up so that…

I want to quit the internet. This is something I think about a lot. The more I share, the more I want nothing to do with it at all. Although I’m not on the YouTubes or the Facebooks, I continue to write on Instagram, in columns, and in print.

Since August, I’ve been irritable, in hermit mode (distressing for an extrovert!), a little depressed and unfulfilled, and having difficulty sleeping. Plus, I’ve been urinating about seven times nightly, which sounds funny but is a special kind of torture. Leading up to 2020, people shared diaries on Reddit tracking…

It’s a new year. For many, that means a fresh start. A chance to clear your mind and move past burdens you wish to leave behind. I have never really been into this concept, for no particular reason. However, 2019 was easily the hardest year of…

I’ve found that one of the most fulfilling things I can do in this life is to work toward a better world. It’s why I wrote a column a few weeks ago about building a diverse coalition: The more diverse a coalition working for a better world is, the…

What’s inside me is more than just bones. It’s more than machinery invading foreign lands. Or darkness where organs used to be. Or wrongs and rights to chart and X-ray until I’m nothing more than gray matter with no name. Recently, one of my digital cystic fibrosis (CF) friends sought…

It is natural that we grow attached to the people with whom we develop relationships. That’s just how it is. There’s not much more to it. The early days of friendship are full of tiptoeing around heavy topics or shying away from our truest selves. That’s what makes developing friendships…

In this column, I want to share the story of a friend who needs a triple-organ transplant: lungs, liver, and kidneys. Before I delve into his experience, I’d like to provide some context about me. I have cystic fibrosis (CF), and through my writing, I was offered a position as…

I am one of the 10 percent. The 10 percent cannot take the new, groundbreaking medication that will hopefully help cystic fibrosis (CF) patients for years to come. Some people cannot benefit from Trikafta (elexacaftor/tezacaftor/ivacaftor) because they recently had a transplant. For others, like me and anomalous genotypes, Trikafta…