Columns

On Oct. 4, I turned 66. The 4th is also the feast day of St. Francis of Assisi. For most of my life, I also shared it with my Aunt Kay. As a boy in Malden, Massachusetts, I thought that was a fine piece of luck. A saint who…

Breathing is supposed to be automatic. Invisible. Effortless. Most people never think about the mechanics behind it — the diaphragm pulling down, the rib cage expanding, the air moving in and out like a tide. But for some of us living with myasthenia gravis (MG), those mechanics take center…

I have been told that I’ve changed since my diagnosis of myasthenia gravis (MG). For a long time, I said I hadn’t, that I was still the same person I had always been. But lately, I’ve been wondering if they were right. I used to be cheerful and carefree,…

Recently, I thought I’d try my hand at poetry. Here is my first masterpiece: A teacher from Malden named Mark saw double from dawn until dark. Not a cousin was missed. Two Aunt Mildreds were kissed. And he greeted two dogs when one barked. It’s not quite Frost…

Myasthenia gravis (MG)  doesn’t usually explode — it erodes. It might be weeks of throat clearing, feeling like you just can’t catch your breath, or eye droop giving everyone the mean mug and acting like it’s filing a workplace grievance. The night I had to crank my BiPAP…

I recently heard myself saying that going on vacation was simply not an option for me. I was craving some rest, though, and saying it made me sad to realize that I wasn’t dismissing the idea because of my job or family arrangements, but because of living with myasthenia…

A few weeks ago I cut my left hand while chopping food. I gave the wound little thought. It became infected, and, rather stupidly, I ignored it, as if a problem might go away if I refused to look at it. I knew better. People living with myasthenia gravis…

Two years ago, I was living a life that felt like mine. I had purpose and direction. I had a body that mostly cooperated. I was building things — businesses, platforms, routines, dreams. I was moving forward. Now, I’m not. Instead, I’m being fitted for a ventilator. Not “maybe someday”…

Last week, I promised a friend I’d drive her to a surgery. It wasn’t my appointment, but anyone living with myasthenia gravis (MG) knows that showing up for anything requires its own kind of preparation. I spent three days doing what I’ve learned to do before any major commitment:…

I’m writing this week’s column using voice-to-text because I simply overworked my body to the point where it doesn’t want to respond anymore, which feels like the perfect place to start. Living with myasthenia gravis (MG) is challenging, but it has also been empowering in ways I never…