Float Like a Buttahfly
— Kerry Wong

Years ago, I heard someone in the chronic illness community say they were “medically retired.” It was before I had fully accepted the idea of being disabled, and I thought it was the greatest euphemism I’d ever heard. Until recently, that’s how I described myself, too. But now that…

I think I need a Bubble Wrap suit. Yep — a full-sized, head-to-toe suit made of industrial-strength protective Bubble Wrap. That (not Obi-Wan) just might be my only hope. My medical records indicate that I’m a “fall risk.” As much as I hate seeing that, I get it. I fall…

Early on in my chronic illness journey, before I knew I had sarcoidosis, I was struggling. I desperately sought answers about what was happening to me, not only physically, but also in other ways, like what my life would look like moving forward, how much of it I’d lose,…

Call me naive. For years, I never understood why my cousin posted the time on Facebook every afternoon. I thought the Doobie Brothers were just a musical family, like the Pointer Sisters or the Jonas Brothers. (They weren’t.) My husband often teases that I grew up “under a…

I think I’m the least prepared I’ve ever been for Sarcoidosis Awareness Month. Or perhaps I’m the least busy I’ve been on these occasions. I know a lack of preparedness and a lack of busyness aren’t the same, but something in my head makes them both feel like a…

When I was in high school, my mom and I began an ear-piercing competition. When I came home for breaks during college, we checked each other’s ears to see who had more. In grad school, she told me I was forbidden to pierce anything other than my ears. That’s when…

When I woke up this morning, my husband was in the living room watching “Star Trek II: The Wrath of Khan” (1982) for the umpteenth time. It was toward the end when — don’t worry, even though the movie is over 40 years old, I won’t offer any…

I was watching the “Morning Joe” talk show this morning — well, not really watching; it was more like background noise while I worked on a few things — when something caught my eye (or, more accurately, my ear). The hosts were introducing a guest who’d just…

Maintenance. It’s a concept I’m quite familiar with. Years ago, when I was following (and later working for) a weight loss program, maintenance was the dream. The idea was that once you reached your goal — when you’d lost the weight you wanted to lose and were the size…

Whether I’m resting after a long day at the infusion center or busy working on my next big project, my TV is almost always on. It’s mostly background noise, something familiar so I don’t have to pay attention. It could be a “Law & Order” marathon or a…

“’Hang on a sec, hon,’ I called to my husband in the car, at the airport, and again on the plane. ‘I want to get a good shot. I’m sure something from this trip will work its way into my next column.’” That’s how I started my column one…

Bracelets with messages meant just to cheer me, Wireless earbuds when anyone’s near me, Cute comfy PJs without a drawstring, These are a few of my favorite things. The holidays are upon us, and while that should be a time of joy and celebration, of love and…