Columns

I don’t know if I believe in miracles. I know that what makes a miracle miraculous is its infrequency and lack of scientific reason, but I often wonder: How come some people deserve them while others suffer relentlessly? For anyone who doesn’t know a lot about cystic fibrosis treatment, a…

Life would be much easier if every complicated disease or disorder weren’t so complicated. COVID-19, cystic fibrosis, depression — if they all manifested uniformly and could be treated the same across the afflicted population, the world would be much simpler. As always, life just isn’t that simple. About two weeks…

I am never going to be well enough to work out. I realized this the other day and said, “I am never going to feel well enough to do this.” And then I wrote it as the first sentence of this column. I am back to working out, for the…

People often declare my life to be stranger than fiction. (It’s true, and it’s both a blessing and a curse.) Usually, that observation is followed by an urging for me to write a memoir. I reply that I’ve tried, but simply don’t know how to end it. I can’t tie…

If you told me 10 years ago that I would be reliant on my parents again, I would have laughed in your face. I was always proud about being independent, and I didn’t need anyone to help me — until I did. When I had my double-lung transplant three…

“I don’t feel well.” I used to say this all the time. I said it before my last round of IV antibiotics and sinus surgery at the beginning of the year. I said it before being sheltered in the same dang place, thus having much less exposure to the…

I used to scoff at the idea of saving money for retirement. It didn’t seem feasible to me to try to plan decades into the future. I accepted long ago that I wouldn’t live past 40, so why save money for a distant future if it was unlikely I…

If I were a doctor, I would say hello and ask a couple questions about the individual first. That way, they would feel like they’re a person, I’m a person, and we are two people who can talk about health. I would not act like the doctor I spoke to…

As a person with cystic fibrosis, I’ve formed close-knit relationships with care providers in multiple disciplines. Before my double-lung transplant three years ago, I was hospitalized frequently. I would be hospitalized for a couple weeks, out for a few, and then back in again. So the cycle went. My…

“Is this what I’m going to do forever?” I asked my dad. We were waiting outside a lab that hadn’t received the necessary fax to draw my blood, even though we had called and confirmed with my doctor’s office hours before. I had emailed my primary doctor earlier in the…