Columns

Transforming Adversity into Progress

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…

What Does It Mean to Be a Patient?

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…

Why Rare Disease Communities Must Stand United

“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…

I Need Help Asking for Help

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…

From Boom to Bust: Managing Work with CF

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.

Diet Tips from a ‘Dying’ Girl

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,…