Columns

In 2020, a myasthenia gravis (MG) diagnosis completely changed my life. According to the Myasthenia Gravis Foundation of America, the prevalence of this disease in the U.S. is estimated at 14 to 20 per 100,000. That means there are about 36,000 to 60,000 cases. So why was I…

“Would you stop sharing so much about mya … whatever the hell it is you have? All you’re doing is looking for attention.” Anyone else heard that before? Maybe from colleagues at work when you’re trying to explain why you’re requesting accommodations? Or family members who roll their eyes…

A recent Washington Post article, written in the form of a multiple-choice quiz, challenges many of the assumptions made about people with “disabilities.” I put disabilities in quotations because my feelings about that term are complex and mostly negative. Putting my unease aside, I agree that “research shows that…

Can you play outside with your kids? Do you need an ice vest? Did you run an ultramarathon in the desert? Are you able to work full or part time? Are you living or barely surviving? The answers to these questions will be different for many of us with…

Spring has arrived here in Texas. The trees outside my windows have lost their winter grayness and once again have turned my home into a treehouse. It’s the time of year when poets and songwriters tell us that new beginnings, and maybe even new love, are in the air. This…

The COVID-19 lockdowns had just started, and small businesses around the world were shuttering at an alarming rate. Many weren’t only temporarily adjusting, they were closing for good. Being in quarantine meant no customers wandering around downtown to shop on a lazy Sunday afternoon. There were no lunchtime meetings,…

Note: This column describes the author’s own experiences with prednisone. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Living with myasthenia gravis (MG), or any rare disease, brings physical and emotional challenges. Since my diagnosis in 2020,…

Last month, when my son, Caden Degen, turned 21, I celebrated it publicly by acknowledging my perspective on what it was like for him growing up, given my myasthenia gravis (MG). This month, he wanted to share his own thoughts, so we communicated via email and phone conversations…

Years ago, a colleague shared her morning ritual with me. After waking, she thanked God for restful sleep, the excitement of a new day, and the caring people in her life. I adopted this ritual. Each morning, I’m reminded that the new day is an adventure. The little boy in…

I’ve lost 20 pounds in three months. Crazy, right? In previous columns, I discussed some of the “aha” moments I’d experienced while taking high doses of prednisone to manage my myasthenia gravis (MG) symptoms. I gained weight — a lot of it — and blamed the medication.