Columns

How I manage my image to live with myasthenia gravis

I recently made peace with the fact that we almost always judge the book by its cover. It’s just what humans do. We believe what we see. And having a disease that’s not always visible has been the biggest challenge of my life. I often look just tired enough to…

Why my twin is terrified of myasthenia gravis remission

The writer and editor Christy Leigh Stewart, who lives with a terminal illness, once said, “Remission is not a cure. It’s an adjective of disability.” In other words, remission from a disease refers to a temporary reprieve from symptoms. There’s a lot I’m still learning about my twin brother,…

The costs associated with my invisible disability

By the end of each month, I always find myself asking: Where does my money go? I work as a freelancer in the digital marketing field, and I also teach courses in the same area. It’s a pretty lucrative activity these days, especially as digital work continues to expand. But…

Riding the wave of euphoria that follows my IVIG infusions

Note: This column describes the author’s own experiences with intravenous immunoglobulin (IVIG) infusions. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. The week, after my cousin’s wedding, I had an intravenous immunoglobulin (IVIG) infusion scheduled — and thank…

How alternative healing methods helped me walk again

Note: This column describes the author’s own experiences with various alternative therapies. Not everyone will have the same response to these methods. Consult your doctor before starting or stopping a therapy. During a myasthenia gravis flare-up in 2019, just before the COVID-19 pandemic, I completely lost the ability to…

Family, fatigue, and the fine art of showing up

A week ago, I packed up my cane, wheelchair, and excitement and hit the road for a cousin’s wedding. It was a six-hour drive each way, the kind of road trip that used to feel impossible when my myasthenia gravis (MG) was more unpredictable. But now that we’re settled…