Columns

My mother was not a quilter. In 87 years, I don’t think she ever gave quilts a thought. It wasn’t until I was an adult living in the South that I became aware of the craft’s popularity. I learned about quilting weekends, magazines, stores, group chats, and more. I saw…

A diagnosis can change your life, but it doesn’t have to define it. For me, living with myasthenia gravis (MG) doesn’t just mean learning how to manage the disease. It has helped me ask questions, notice patterns, and even become something I didn’t expect: a patient researcher.

When it comes to illness, we like having a reason for it. When my stomach hurts, I ask myself what I ate. When I catch the flu, I wonder who I might have gotten it from. So when I was diagnosed with myasthenia gravis (MG), my first questions were…

Every eight weeks, when I sit in an infusion chair, I can’t help but think of the small, patient labor that had to happen before the medication Ultomiris (ravulizumab-cwvz) ever found my veins. Myasthenia gravis (MG) doesn’t care much about history, but I do, and Ultomiris has one worth…

Being told “no” never gets easier. Even though I’m an adult, that two-letter word has the ability to bring out my inner tantrum-throwing toddler in their “terrible twos.” My husband, Justin, has found a way to lessen the blow so that “no” becomes a …

Navigating chronic illness often means balancing conventional medicine, complementary care, and well-meaning advice. One columnist reflects on finding a thoughtful, whole-person approach without losing sight of safety.

Note: This column describes the author’s own experiences with various pain management techniques. Not everyone will have the same response to these modalities. Consult your doctor before starting or stopping a therapy. Living with a chronic illness means I am never truly well. Early in the morning, my muscles might…

I have an unusual and slightly weird affection for old-time hymns. Something in me responds to the great hymns that have endured for thousands of years, such as “Sub Tuum Praesidium,” one of the oldest known hymns in Christianity. I feel a physical reaction to them. I also…

Myasthenia gravis (MG) has taken plenty from me — strength, stamina, the ability to pretend I’m fine when I’m absolutely not. But here’s the twist nobody expects: Some of the things MG yanked out of my life were things I should’ve tossed years ago. MG may be a…

I was having a spirited discussion with my twin, Aaron, about the upcoming “Avengers: Doomsday” film when I suddenly noticed something. His eyes moved, just a little, and his eyelids weren’t drooping! Normally when I talk to him, his pupils don’t move or his eyelids droop due to myasthenia…