I grew up in Malden, Massachusetts, surrounded by history. According to the City of Malden’s website, “In 1640, the Puritans settled in Malden on land purchased in 1629 from the Native American Pennacook Tribe.” On May 27, 1776, the citizens of Malden declared that, should the colonists…
My dad was born 100 years ago June 20. It’s funny that June is Myasthenia Gravis Awareness Month, as he lived the last 10 years of his life with the condition. Before that, Dad spent 40 years in the classroom teaching English. He was born a teacher. His years…
Living with myasthenia gravis (MG) means living with a body that doesn’t always cooperate. Muscle weakness, fatigue, and frustration can be daily companions. The support and love of family and friends are crucial. Since my diagnosis, I’ve met people from many backgrounds who’ve become my friends. The strange…
Living with myasthenia gravis (MG) has changed important parts of my life. It has taken things from me that I thought were permanent, such as my physical strength. My previous ability to plan my days with confidence no longer exists. Most difficult of all, MG has made me distrust…
In the novel “The Lightning Thief,” Rick Riordan writes that “knowing too much of your future is never a good thing.” Five years ago this month, I was diagnosed with myasthenia gravis (MG). Back then, if I could’ve seen the emotional, physical, and psychological toll this illness would have…
Living with a rare disease is difficult enough, but in the United States, patients fight not only their illness, but also the healthcare system that’s supposed to help them. I was diagnosed with myasthenia gravis (MG) five years ago this month. Managing it requires specialized care, regular…
This is a letter to all those who read and appreciate the work of Bionews, the parent company of this website. Like you, I am a member of the rare disease community, and writing a column about myasthenia gravis (MG) has lightened some of the darker moments of…
Grief’s companion is pain. But in that pain, we can find richness. Holding my mother’s hand as she took her last breath was incredibly painful, but also one of the finest moments of my life. I was able to be with her as she exited this world, just as she…
I’m not the first guy to discover that myasthenia gravis (MG) deserves membership in the select group known as invisible illnesses. Lately, I’ve been thinking about the impact that life with such an illness has on a person’s emotional health. I don’t want to end up in a dismal spot.
It wasn’t my intention to write a column about exhaustion, fatigue, and the part they play in my life with myasthenia gravis (MG). But here’s what happened. I woke up yesterday and went about my usual routine. I ate breakfast, showered, shaved, and dressed. Then I sat at my…
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