Columns

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.

Guess what I did last week? I took a shower standing up! Who cares, right? Well, I do. Because it was a win, however small. When you have a rare disease like myasthenia gravis (MG), the ability to celebrate big wins becomes a rare event of its own. Those…

We all do it. There’s a reason we have the phrase “keeping up with the Joneses,” which everyone knows and understands. For some reason, we want the outside world to see our lives through a specific viewfinder, one that shows the highlights with filters. Because of this, as a society…

Pulitzer Prize-winning author Frank McCourt once said of his fellow Irishmen, “I think there’s something about the Irish experience — that we had to have a sense of humor or die.” The tragic nature of Irish history certainly tested the ability of the Irish to maintain any sense of…

Shedding tears in frustration. Missing football games. Giving foot rubs and having heart-to-heart conversations. Being teased because I was in a wheelchair. Raising a boy to become a young man is hard enough without throwing myasthenia gravis into the mix. But I like to think we made the best…

What do you do when you are awakened by your son telling you that a dead tree just fell on his stepdad’s head? For me, a switch flipped, and I went into medic mode, something I hadn’t engaged in for years. Yet I returned to it in a split second…

So you have myasthenia gravis (MG). Some of your friends or family have distanced themselves from you. You take handfuls of pills every day to kinda-sorta function. Life isn’t what it used to be. Get over it. Yup, you heard me. Get over it. But hear me out.