Columns

Imagine living your whole life knowing you have an early expiration date. Then you wake up one morning, and that’s no longer the case. Sounds great, right? Of course it is, but it’s so much more complicated than that. I never would have understood before living through it. Trikafta…

Most people hate the attention birthdays bring. I get it. It’s only in recent years that the meaning of birthdays has shifted for me. Prior to my double-lung transplant three years ago, every year of life felt like a feat. Now, every birthday is icing on the cake — literally.

I don’t want to write this column. OK, for the sake of my editors, let’s be clear: I love this column and this company and this job. I am so lucky to have it, and I honestly can’t imagine how I’d get through parts of life without a consistent…

Two years ago, I found myself drinking a cup of coffee in a quiet coffee shop in downtown Chicago. I still struggled to call myself a writer or understand my writing goals. (Though, by this time, I had already been writing for CF News Today for a few months.) I…

The holidays always seem to be a complex topic. Adding chronic illness to the mix makes them even more tense. And now the world is living through a pandemic, which adds a layer of ambiguity. Navigating uncertainty brings anxiety, but we have a choice in how we respond. Holiday…

Yes, sickness is giving me a panic disorder. Let me explain. No, there is too much. Let me sum up: Never knowing exactly what to do or who to call or what the protocol is with every new symptom, in a body that creates new symptoms annually, makes me long…

I don’t know if I believe in miracles. I know that what makes a miracle miraculous is its infrequency and lack of scientific reason, but I often wonder: How come some people deserve them while others suffer relentlessly? For anyone who doesn’t know a lot about cystic fibrosis treatment, a…

Life would be much easier if every complicated disease or disorder weren’t so complicated. COVID-19, cystic fibrosis, depression — if they all manifested uniformly and could be treated the same across the afflicted population, the world would be much simpler. As always, life just isn’t that simple. About two weeks…

I am never going to be well enough to work out. I realized this the other day and said, “I am never going to feel well enough to do this.” And then I wrote it as the first sentence of this column. I am back to working out, for the…

People often declare my life to be stranger than fiction. (It’s true, and it’s both a blessing and a curse.) Usually, that observation is followed by an urging for me to write a memoir. I reply that I’ve tried, but simply don’t know how to end it. I can’t tie…