Columns

Last in a series. Read part one. Last week, I asked why those with cystic fibrosis (CF), a progressive and incurable genetic disease, must keep proving disability after already qualifying. This is especially frustrating after reaching an advanced disease stage and undergoing a life-extending double-lung transplant, as I…

Cystic fibrosis (CF) tends to take up a lot of space in my life. Sometimes it’s so all-consuming that I don’t get to focus on anything else, and I must wrestle to separate my identity from this label that I never chose. But CF is not my whole life…

My column, “Mutations & Conversations,” was first launched in 2018 after I observed Cystic Fibrosis Awareness Month by writing a blog post every day in May about living with cystic fibrosis (CF). This decision to write this series was made in the midst of grief: My sister,…

First in a series. There is no cure for cystic fibrosis (CF). This is not a controversial statement. It is not debated in the medical literature or disputed in transplant centers. Everyone in this community knows it in their bones. I say that literally, as CF-related bone disease…

Nearly eight years ago, I flew to Salt Lake City for the Transplant Games of America (TGA). It was one of the best decisions I’ve ever made. Life-changing, in fact. It had been almost a year since my double-lung transplant due to cystic fibrosis (CF). That first year…

When my late daughter, Jasmine, who had cystic fibrosis, turned 10 in 2001, she had lived through a year of medical routines and hospitalizations. But there were also moments of unexpected joy. For her birthday, she wanted a unicorn cake, so we attempted to make one together. With our…

Counseling is as routine for me as eating. Being born with cystic fibrosis and receiving a double-lung transplant led to recurring mental health struggles, including anxiety and depression, which require continual management. Therapy is one of the tools I use to respond. I began my college years as a young,…

Every morning used to start the same way. My late daughter, Jasmine, would shuffle into the kitchen with wild-looking hair, rub the sleep from her eyes, and ask for applesauce with cinnamon. Before she could eat, though, she’d have to do her cystic fibrosis treatment regimen, which consisted of…

“Why do you keep talking about what you’ve been through?” Yes, I’ve actually been asked this before. No, I won’t stop talking about what I’ve lived through. It’s not for my own sake, but because people continue reaching out to me to say that sharing my story helps them feel…

During the summer of 2001, when my late daughter, Jasmine, was 9, she required a two-week hospital stay due to an acute pulmonary exacerbation — a complication of her cystic fibrosis (CF). Life was never the same after that. When I finally brought her home, the relief was…