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This is an apology you don’t know I’m writing. The first thing I texted you today was “Nope.” It was in reply to what you texted me at 9:07 a.m.: “Have you seen an ENT yet?” You were gone before I opened my eyes, as our schedule so often trends,…

Bradley was a dramatic kid. I’d sit up in bed at night, unable to lie down because it made me cough, and wonder whether Prometheus ever became used to having his liver pecked out each day. I concluded it wouldn’t be much of a curse if he got used…

In my senior year of high school, I went to the exercise section of Dick’s Sporting Goods and searched for boxing gloves. I had decided on a whim that I wanted to learn how to box. At the time, I was mostly weight lifting, and the majority of my…

I have a funny relationship with the P-word. It feels as familiar as my own skin, yet somehow still alien. At clinics when I was growing up, I used to strain my eyes across the table, trying to read my doctors’ notes as they…

I am not a whole and complete person. All you have to do is look at my medical chart to know that this is a fact. I have a different doctor for every part of me. I am not an “I” or a “me” — I am the parts of…

“You need space at the table for five wheelchairs?”  The waitress’s eyes exploded from her skull, shocked to the degree I’d expect if I were to ask that she seat five grizzly bears. When making the reservation at the restaurant, I said…

Since I work in a cystic fibrosis (CF) lab and prioritize being open about my experiences with the disease, I’ve had some pretty heavy philosophical conversations with scientific peers. One of those conversations has been about my perspective on the concept of passing on the CF gene. CF is a…

Asking for help. It sounds so easy, doesn’t it? In the dance world, however, it’s almost impossible. In the world of healthcare, surprisingly, it’s just as difficult. Years ago, when I was dancing in a small company in Washington, D.C., I expressed worry over a potential injury and asked for…

Growing up, I was insulated from the wider cystic fibrosis (CF) community. Since I had a sibling with CF, I didn’t feel the need to meet other kids with CF. My sister Alyssa and I had an amazing bond in which CF was a part of our lives. It allowed…

Three weeks ago, I gave a guest lecture to the MBA class at the University of Cambridge. The next day, I traveled to Liverpool and appeared onstage with my former cystic fibrosis (CF) consultant at the Cystic Fibrosis Trust Europe Community Afternoon.