Columns

Talking Heads is one of my all-time favorite bands. One of their most popular songs, “Once in a Lifetime,” has a refrain in its bridge that goes, “Same as it ever was, same as it ever was.” Monotony may not be something most people would choose…

Note: This column describes the author’s own experiences with Trikafta (ivacaftor, tezacaftor, and elexacaftor). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Recently, we experienced a miracle. Or at least we thought it would become our miracle. In April,…

Over the past few weeks, I’ve attempted to focus my thoughts on an area that many of us within the disabled community know all too well: the waiting room. That room is a microcosm for healthcare in the United States: It’s a gateway to healing, but, in 2023, it’s functioning…

Dear fellow parents, After a long summer, it’s finally time to send our kids back to school. Trust me, I’m just as excited as you to have some quiet in my house. But I’m also incredibly nervous. While returning to school is a milestone for every parent, for me,…

Having two rare mutations that cause my cystic fibrosis (CF) has been a small blessing for me. It’s true that I’m unable to participate in many clinical trials that might have given me access to new medications; that’s because I don’t have a copy of the…

Living with cystic fibrosis (CF) and transplanted organs has taught me a great deal about how to successfully travel by air with a chronic illness. While my medical needs look significantly different now than they did before my double-lung transplant six years ago, all of my health…

Like others with chronic illness, many of us with cystic fibrosis (CF) have met someone who has recommended something that would “cure” us of our disease. Someone once told me that some kind of tea would clear out all of my mucus and lung infection. While I appreciated their…

In 1994, I was 24 years old and engaged to be married. My health was good despite my cystic fibrosis (CF). My doctor hadn’t mentioned anything about family planning, so I decided to move forward with my life. A month before our wedding, my husband-to-be and I stopped…

All symptoms aren’t created equal. They can be visible or invisible and range from manageable to unbearable, even debilitating a person for days on end. With cystic fibrosis (CF), symptoms can last a lifetime and affect far more than the lungs. Some even develop into separate diseases, creating…

The thought of having a critically ill child never crossed my mind until it actually happened. I’d hear or see stories about sick children fighting for their lives on television commercials and social media, but I never imagined I’d be that parent. So it was surreal when my 4-year-old daughter,…