Columns

When I was a kid and adults learned that my younger sister, Mary, had cystic fibrosis, their standard response was a meaningful sigh coupled with a slow nod. Then, they’d often tell me, “Oh yes, I read the book.” I knew what they were going to say before the words…

I didn’t want to write about this yet. Of course, I also thought COVID-19 would be over by now. From the very beginning of the pandemic, I had hoped, like so many others in the chronic illness community, that things would go differently. I always knew the pandemic wouldn’t end…

Hair has always been a huge part of my identity. Sometimes, it was my way of communicating. Other times, it revealed my declining health. Despite the risks of it being cut too short or dyed the wrong color, my biggest fear was always losing my hair.  …

“I am not doing well at all.” I don’t like saying this. I don’t like saying this because I have children who read things. I don’t like saying this because I have students who see and worry. I don’t like saying this because I don’t like saying this. But…

This column’s title may seem strange to some, but it’s not for those of us who’ve faced sleep disorders due to anxiety. For years I wondered if I would wake up in the morning because my breathing was so bad due to cystic fibrosis. Going to bed without knowing if…

If I were a superhero, my Achilles’ heel would be water. Before I illustrate, I must explain how anti-rejection medications work. A healthy immune system is trained to attack foreign bodies such as viruses because they’re often harmful. When I received my double-lung transplant in June 2019 due…

In many ways, I feel unqualified to write for a publication about cystic fibrosis. I was lucky enough to be born only as a CF carrier, while my younger brother, Brad, drew the short straw in the Punnett square game. Besides, my day-to-day life is no longer affected…

I have thin privilege. I’ve said this before and I’ll say it again: This is significant because only those who benefit from the system can help break the system — and it needs to be broken. “I saw a comment on Instagram where someone pointed out how sexist the concept…

It’s been a long time coming for me to write directly about my life with cystic fibrosis in a body that gives me no choice but to balance illness with society’s definition of a normal life. I am here, in part, to be honest, and to find connection within that…

Most cystic fibrosis (CF) patients are admitted to the hospital for “tuneups,” which are hospital stays meant for IV antibiotics and additional treatments. CF patients are known for having frequent respiratory infections, and tuneups are done either proactively or reactively, based on a patient’s needs. Some patients have more…