Columns

The world isn’t fair. Anyone born with a genetic disease like cystic fibrosis before they’ve even had a chance to earn bad karma knows that. But that doesn’t mean we need to stand aside and “take it” when other people are unfair to us…

A couple weeks ago, I wrote about misunderstandings within the CF community. But what about misunderstandings projected into the community from the outside? If you’re a non-CFer, keep these things in mind when interacting with someone who has the disease. You might not feel sick, but that…

“You’re so lucky.” I’ve heard and read that all too often over the past year. I’m lucky I lived to my 20s with cystic fibrosis, I’m lucky I had a lung transplant, I’m lucky my recovery was relatively smooth. The phrase is…

“Cystic fibrosis is a genetic lung disease.” That’s an accurate statement, sure. But it doesn’t reflect the diversity of patient cases — the myriad mutations that cause each case of CF, and the unique medical contexts that shape those cases. And, as all CFers know, the mutations affect…

I’ve gone through life afraid of numbers. Not just math, although I’m really terrible at that. Numbers like “37”: the life expectancy of someone with CF, a number that was even lower when I was growing up. Numbers like “4”: the amount of antibiotics needed to…

I walk through a football stadium. I catch a whiff of the cotton candy and am smacked back to every procedure I’ve had, breathing in the stale cotton candy-scented anesthetic before I drift to nothingness. I am so overcome with fear that I feel like dropping to…

In the three years that I’ve spent away at college, I’ve learned oodles of life-changing lessons that can only be taught by good ole Professor Experience. Freshman year, I learned that duct tape won’t keep twinkly lights on your walls, but will allow…

I won’t lie. The first two months after my double-lung transplant were rough. I wasn’t in much pain, but my body was struggling to adjust to the cornucopia of transplant drugs, and I experienced the torment of withdrawal from the powerful painkillers I was on. After those…

You’re about to read something I wrote two years ago. I had been diagnosed with anxiety and depression not long before then. Both left me utterly crippled, and would continue to do so for several months, but what I struggled most with…

Last week I wrote about how lung transplantation isn’t the Boogeyman I once thought it was. After I had done my research, I finally considered being evaluated for a transplant. My doctors and I expected it to be at least a couple years before I’d need…