Columns

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…

“I’m watching you, Wazowski. Always watching.” If you’re a cartoon fiend like I am, you likely recognize that quote from “Monsters, Inc.,” said by Roz, an administrator. Roz has a gravelly, smoky rasp of a voice. I’ve used this character as an example of what I sound like when my…

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…