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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.

A truth binds the lives of two women who have never met. One sees into the other’s soul through her writing — for both women, cystic fibrosis (CF) has been their greatest blessing and most dreadful curse. Reading Mallory Smith’s posthumous memoir, “Salt in My Soul: An…

This is going to feel like something you’ve read before. It’s going to say things like, “Don’t assume just because someone is thin they want to be this weight,” and, “It’s so hard being judged for something you can’t control.” All that is true. I have read the skinny-sick posts,…

It’s been almost three years since a port-a-cath infection nearly killed me. A fungal infection invaded my bloodstream and attempted murder, shutting down my organs and blasting me into a dimension of hallucination and suffering for days. When I awoke, I was a terrified, caged animal. I awoke to…

Most clinical manifestations of cystic fibrosis (CF) are in the lungs, pancreas, gastrointestinal tract, and sometimes the sinuses, kidneys, and liver. Unsurprisingly, these concerns attract most of the attention. And CF’s main clinical manifestations should warrant most of the focus. But it’s crucial that we don’t forget the “less serious”…