Columns

Once upon a time, I was constantly on the go. From the moment my feet hit the ground each morning, I never stopped. Then myasthenia gravis (MG) entered my life and work became impossible, so I retired. After that, many of the activities that once filled my days vanished.

Living with myasthenia gravis (MG) means learning that some of the most powerful triggers aren’t the ones anyone warns you about. They’re not always heat, or illness, or overexertion (though those matter, too). The hidden triggers are the ones you discover only by living inside a body…

My twin brother’s eyes have begun to droop again. It happened during a period recently when I got locked out of my main social media account, and I was busy with work, so I wasn’t keeping in touch with Aaron as much as I usually do. Drooping eyes used to…

Over the years, I’ve developed an annoying habit of blaming everything on myasthenia gravis (MG). Being aware of it sometimes makes it worse, because I catch myself doing it and still feel unable to stop. It feels like I’m slowly handing control over to MG, one excuse at a…

Last week, I attended a friend’s birthday dinner. Whenever we get together, our conversations remind us why we value each other so much. We always begin with the basics, which change with each passing year. We still ask about things like families and careers, but nowadays, we’re more likely to…

Over the last 15 years, I’ve learned that having myasthenia gravis (MG) means living inside a body that rarely behaves the same way twice. In the early years of my symptoms, long before anyone put all the pieces together, I kept trying to make sense of what was…

For more than 26 years, I avoided talking about myasthenia gravis (MG) with my twin, Aaron. We’re 50 now, and Aaron was in his mid-20s when he was diagnosed, and everything changed. He went from being an intense, exercise-loving, hard-working man to living with a condition that weakens his…

Any job comes with pros and cons, and working while living with a chronic disease highlights the cons in bright colors. While I often talk about my digital career, I never thought to share one of the most physically challenging jobs I’ve had with myasthenia gravis (MG): teaching.

Loving someone with myasthenia gravis (MG) isn’t a rom-com, inspirational-poster kind of love. It’s the sleeves-rolled-up, “we’re figuring this out in real time,” “in sickness and never mind” kind of love. MG doesn’t just change the person who carries it; it reshapes the entire relationship. I’ve lived with this…

My twin brother, Aaron, took advantage of the recent winter blast in New York and went to the gym. With myasthenia gravis (MG), he finds that he has more energy in lower temperatures. Being out in public means having to sometimes deal with people at their worst.