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I’ve been fortunate to start taking Trikafta, a next-generation, triple-combination treatment for cystic fibrosis. My journey began in December, but it hasn’t been the easiest path to walk along, as I’ve encountered unexpected twists and turns. How Trikafta affects someone’s relationship with their…

I’m going to say something that not everyone wants to hear: Just because we are sick doesn’t mean we get to be bad people. Let me explain. I have an inclusive dance company called Comebacks that I co-direct with an occupational therapist. Within this company, we have a variety…

It probably won’t come as a shock if I say that growing up with cystic fibrosis is confusing for one’s identity. Cystic fibrosis requires a huge time commitment and affects most areas of our lives. We can choose to hide it, which probably isn’t the best idea, because then…

I’m going to talk about something other than sickness for a second. But stay with me, because I’m coming back to that, too. By the time you read this, the Oscars will be a week behind us. A South Korean film named “Parasite” will have won best picture. And likely…

I did not trust the process. I was impatient. A common theme with technological advancements is the expectation of instantaneous results. How many times have you heard someone tell you to “Just give it time”? That’s easier said than done. We started walking to raise…

I compare myself to other people. I shouldn’t, but I do. Sometimes, other people seem nervous to compare themselves to me. “I don’t want to sound like I’m complaining about my health to you” is a regularity, and I never stop appreciating that sensitivity. We have all known that person…

I haven’t tasted much energy over the past month. Thanks to steroid withdrawal, I spend most of my time near home. It’s not all that bad, honestly, to sit around and do nothing. “Doing nothing” can be productive. I didn’t always feel that. Back in my pre-transplant days, I…

All interpersonal relationships are a power struggle. With our friends, family, caretakers, providers, co-workers, and everyone else, we are pushing and pulling, and giving and receiving power in one way or another. That’s not to say that everything in life is transactional; you don’t hold the door for someone and…

“You don’t look Deaf.” This is something I’ve been told while my best friend — who is hearing — was told she does. I’ve had a sign language interpreter turn to leave my hospital room because I spoke to them when they entered. I’ve been on the flip side of…

Fatigue is a challenging condition to describe. It entails being tired, but it’s so much more than that. Fatigue is the side effect of chronic illness that haunts me the most. It can hit at any time like a ton of bricks. The worst…