Columns

How Much CF Do You Choose to Show?

Getting older has its perks.  With each passing year, I find I’m a little more willing to reveal.  I feel more open to showing my true skin. I used to conceal it with foundation, eyeliner — the whole works. Now, I only cover the…

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…

Medicine Is Splitting Me into Pieces

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…

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…