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I struggle with needing help and not having answers. I’ve always wanted to be calm and collected in challenging situations. I don’t like feeling panicked or out of control, which means I don’t like expressing emotions before I’ve had time to process and understand what I’m feeling. Over the years,…

Cystic fibrosis (CF) doesn’t take breaks, but my late daughter, Jasmine, would have none of that. Even as a child, she was a pro at fighting this rare, genetic illness. Children are so much more resilient than we realize. Her joy in life taught me not to focus only…

Five and a half years ago, I received the gift of a lifetime: a double-lung transplant that gave me back my breath and, in many ways, my life. After decades of fighting cystic fibrosis (CF), I finally felt free. And then reality set in. Nobody tells you that a…

I’m not a jerk; I’m just tired. Admittedly, though, I feel like a jerk sometimes. My eyes widen at the number of private messages that flood my inbox. I know they’re from sweet people who need support and encouragement. “I’ll tackle them another day,” I say aloud. But days can…

“You might live long enough to finish college, maybe even get married, but …” I imagine this is what the textbooks used to say about cystic fibrosis (CF) when I was in college. While I heard such things at medical appointments, I refused to let that narrative define my…

I suspect that many people think living with a chronic illness means that all of your days are filled with drama, such as emergencies, hospitalizations, and constant danger. But that wasn’t how it was for me and my late daughter, Jasmine, who had cystic fibrosis (CF) and passed away…

February has always been a complicated month for me. The holidays are over, spring feels impossibly far away, and here in the Northeast, the gray skies and frigid temperatures seem to stretch on endlessly. And with cold and flu season raging, this time of year presents its own unique challenges…

My permanent disabled parking placard was falling apart, and after 10 years of use, it was held together with tape. So I went to the Department of Motor Vehicles to get a new one. “I’m so sorry that it’s permanent,” replied the lady behind the service counter. Her response shocked…

I never thought I’d make it to menopause. When I was growing up with cystic fibrosis (CF), living beyond young adulthood felt ambitious. Living to my mid-50s? That was science fiction. Yet here I am, facing hot flashes, brain fog, and sleepless nights — symptoms my CF care team…

Last weekend’s weather forecast called for a wind chill factor of -35 F. We don’t usually experience such low temperatures here in Vermont, but this winter has been hitting hard. Before I serenade you with “Ice Ice Baby,” I want to take a trip down memory lane. I am so…