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The first time I heard those dreaded words, “You have myasthenia gravis” (MG), I felt such relief after searching so long for a diagnosis. That was quickly followed by an intense desire to learn everything I could about the condition. One of my biggest motivating factors was a strong…

In less than 30 days, I’ll be getting married and moving in with my future husband, the love of my life, who has lived through every stage of myasthenia gravis (MG) with me, from my diagnosis in 2018 to the grieving journey I am still going through today. But…

Every October, on the faces of many New Englanders, particularly Bostonians, you’ll see a look that cannot be seen anywhere else in the country. In my imagination, it’s the same look you would expect on the face of someone who has seen a religious or ghostly apparition, or the awe…

Let me paint the picture of what our world looked like three years ago. My husband, Ty, and I had been married for about eight years at the time. We were living what I would consider to be the most beautiful life. Peaceful walks around the neighborhood were an almost…

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…