Columns

There’s a strange quiet that settles over a house when two people who usually move in tandem suddenly have to live on opposite sides of it. My husband has been fighting off a nasty head and chest cold. The kind with heavy coughing and congestion that rattles the walls and…

Sixteen years ago, when I was diagnosed with myasthenia gravis (MG) at the age of 12, I was very active. I played sports, including volleyball, until I had to quit because double vision made it impossible. I didn’t like giving up sports, but since I was a teenager and…

Years after being diagnosed with myasthenia gravis (MG), I still find myself navigating other people’s perceptions of my disease almost as often as I navigate my symptoms. But while my muscles are unpredictable, people’s reactions seem surprisingly consistent. Most fall into three categories: those who think I’m faking,…

I celebrated Independence Day a little differently this year. While the rest of the country lit fireworks, grilled burgers, and gathered with friends, I quietly celebrated a different kind of freedom — the kind that comes from choosing a new path when the one you’re on stops serving you. Last…

When I was a teenager, I thought smoking was cool. It seemed fun to try with friends, and for years, that is exactly how it stayed. I would smoke only three or four cigarettes a year, usually during a relaxed evening with friends. It was never a habit. Lately, though,…

It’s sweltering here in Texas. The air quality is abysmal, and a sense of “blah” seems to be everywhere. For somebody like me living with myasthenia gravis (MG), daily life is significantly more difficult this time of year. I’m forced to be semi-monastic, only crawling out of my lair,…

Living your best life sounds like a big and overly simply goal, the kind people put on vision boards or stitch onto throw pillows. But living with myasthenia gravis (MG), I’ve learned that my “best life” isn’t a sweeping transformation. It’s not a grand plan or a 10‑step program.

I wanted to live life to the fullest this year. I wanted to act as if I had no chronic disease, to try every activity that crossed my mind, to be more social, more active, and, in the end, simply happier. After years of feeling trapped inside an invisible cage…

Before I was diagnosed with myasthenia gravis (MG) and neurologists started timing how long I could hold my arms in the air, I had another name altogether. To my family, I was never really Mark. I was Boo, a shortened form of Booza. Usually, we don’t choose our nicknames.

There’s a phrase I hear more often than I’d like: “Must be nice.” Must be nice to sleep that long, to nap whenever I want, to not have to get up for work. Yeah, it’s real “nice” having a body that forces rest whether I want it or not. Here’s…