Columns

I’ve often written that “the disease itself isn’t the worst part, rather it’s the …” The medication side effects, the childhood trauma, the dread, the blah, blah, blah. Today, it’s the social exclusion. Post-transplant, I’m not very excluded. Sure, I can’t eat sushi with my friends, and most…

I used to be ashamed about my insecurities. I believed that as a man, I was supposed to be strong. I was supposed to silently hate myself, my appearance, and my body, while projecting an immutable air of confidence. That was the “manly” way. My masculinity, my…

Staying 6 feet apart is not new to me. It’s not new because I have atypical cystic fibrosis and have been doing it for years. Most people know about this rule by now. They’ve either lived it, heard it (backwashed in this very column), or seen it in a…

Hearing the words “blood transfusion” still sends chills down my spine. The emotional response my entire body felt when I heard those words for the first time from a doctor is still traumatic. “I wasn’t supposed to get one of these,” I thought. I had just had a double-lung transplant…

At the start of November, I was infected with COVID-19. My heart rammed repeatedly and rapidly against my sternum, which had been broken four years earlier by lung transplant surgeons. I was dizzy, reeling from the local health department’s phone call informing me of my exposure to a person with…

Today, I woke up and left for a doctor’s appointment. It was 8 a.m., and my eldest daughter was coming with me in case I needed an interpreter. I’m Deaf and fluent in American Sign Language (ASL), but I cannot read lips with all the masks, so we took this…

I can’t remember when I first fell in love with science. I loved learning about it and going on field trips, but I didn’t enjoy science fairs because I missed hanging out with my friends (although I did place second at a science fair with some assistance from my dad).

Who would I be if I lost the parts of me that make me … me? At the height of my back pain — which is off in the old place, on in the new — I can’t sit up for long stretches to write, or stretch myself to…

Two months ago, I watched myself die, then get resurrected on television. Sort of. I used to interview fascinating people in Hawaii for local magazines. I’d never imagined I’d be profiled, much less through a documentary. But there I was, featured in a Bay Area NBC segment titled “…

Imagine living your whole life knowing you have an early expiration date. Then you wake up one morning, and that’s no longer the case. Sounds great, right? Of course it is, but it’s so much more complicated than that. I never would have understood before living through it. Trikafta…