Columns

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,…

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…

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…

“Failure is not an option. Winning and learning are the options.” I don’t know who said that quote, though it’s been attributed (with slightly different grammar) to the neurologist and writer Debasish Mridha. But it often inspires me in life. There are so many things I’ve yet to do, but…

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…

Grief’s companion is pain. But in that pain, we can find richness. Holding my mother’s hand as she took her last breath was incredibly painful, but also one of the finest moments of my life. I was able to be with her as she exited this world, just as she…

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…

Yoga expert Vanda Scaravelli once said, “Movement is the song of the body.” Every person has a rhythm when they walk, move, or use mannerisms to communicate. Since my twin brother, Aaron, was diagnosed with myasthenia gravis (MG) in 1999 at 24 years old, his rhythms have looked a…

I discovered my love of cooking when I was 12. While I enjoyed every part of my learning journey, my mom didn’t fully trust me in her kitchen, so I didn’t get to cook very often. I still live with her, so cooking for me is a rare occasion, which…

I’m not the first guy to discover that myasthenia gravis (MG) deserves membership in the select group known as invisible illnesses. Lately, I’ve been thinking about the impact that life with such an illness has on a person’s emotional health. I don’t want to end up in a dismal spot.