Columns

Chadwick Boseman is dead, and I’m going to write about it. He has been dead for seven months now, so this isn’t breaking news. Even so, I remember exactly when it happened. It was the same day my Aunt Joyce died, and I remember thinking how strange it…

“You have stage 3 kidney disease,” the doctor told me. I remember that first appointment with my nephrologist as a blur. Choking back tears, I took in the news with trepidation. I wasn’t prepared for this world of newly discovered health problems. Yet there I was, three weeks after my…

I am staring at a blank page trying to figure out what to write, and all I want to say is: “I’m so stressed.” I want to tell you about all the crazy pressures and stressors I’m under because it’s all I can think about. How can I write anything…

I used to dislike surveys, polls, and questionnaires. I understood why they existed — customer or patient feedback is important — but I never really saw anything change once I took a survey. I hadn’t considered that perhaps my feedback was unrealistic or didn’t represent the entire community. It wasn’t…

Because we just honored Rare Disease Day on Feb. 28, I’d like to share what it’s like living with one. Having a rare disease means strangers telling you what your rare disease means, even though they’ve never lived or worked with it themselves. It means existing with stereotypes…

Social media is a strange and fickle web of predetermined, or accidental, personas. I used to be very active on social media, with the intent of spreading awareness of cystic fibrosis. It was easy to do because it was taking over my life. There was never a shortage of doctors’…

All of us who are affected by cystic fibrosis have our own unique experiences. No two stories are the same, let alone our genetic mutations. Taking it to the next level and looking deeper into what makes us who we are is risky, but necessary. Sharing the most vulnerable parts…

“I am so happy right now,” I say to my partner as we set off on a drive on an ordinary Sunday. I haven’t said this much in the last year, although I’ve tried. “This moment is brought to you by No Pain,” I joke in that commercial voice we…

It’s 10:25 a.m. and all I’ve had is coffee. Last week, I wrote about my struggles with cystic fibrosis-related digestive damage and my increasingly fragile colon (which is not a colon anymore, but a small intestine and an inch of rectum pretending to be a colon), and I keep…

I’ve been in love. It was magnificent. It also hurt. Love belongs among the most powerful building blocks of our cosmos. Passion drives creation, compassion nurtures it. Blend the two for love. Tragically, I’ve found that adding a sick body to the mix can threaten the balance. Passion wanes as…