Every year, I reflect on my diagnosis of myasthenia gravis (MG) on June 24, 2020. As I look back on the past year, I see that MG forced me to reconsider my understanding of certainty. I like predictability. Schedules and timetables are comforting, providing an order that appeals to…
“Is there anything I need to know to help you in an emergency situation? What does an emergency look like for you?” A client of mine recently asked me those questions as we chatted before getting to work. She had come into The Nook, a shared workspace I run,…
It’s crazy to think that I’m approaching my 30th month of writing my column, “The Whispered Roar,” for Myasthenia Gravis News, as well as my seventh year of raising awareness for myasthenia gravis (MG). Over the years, I’ve grown quite comfortable sharing my story, so I thought…
Because of myasthenia gravis (MG), not only do I have to keep track of the food I eat, the amount I talk, and the schedule for my treatment plan, but I also must pay attention to everything around me. Some days it’s all overwhelming, and I wish I…
As you watch the scene unfold, you see someone standing before a person who’s seated. The person who’s standing swings a pocket watch in front of the other, whose eyes are closed, and chants, “You are getting sleepy. Veeeeeeeery sleepy.” Is this what you envision when someone mentions hypnosis? It…
June 25 marks four years since I was diagnosed with myasthenia gravis (MG). Looking back brings to mind the ancient Greek dramatist Aeschylus, who observed that “he who learns must suffer. And even in our sleep pain, which cannot forget, falls drop by drop upon the…
When explaining myasthenia gravis (MG) to someone, I often describe it as a “fickle [expletive].” With MG, there seems to be no rhyme or reason for anything. At the start of my diagnostic journey, I asked my healthcare providers what might have triggered the slow, progressive mudslide of…
If you’ve been recently diagnosed with myasthenia gravis (MG) and you’re looking for a website to help you understand what that means, including how to explain to family members what your life is actually like, you’re in the right place. If you’ve been hearing the same sh*t about being…
Note: This column describes the author’s own experiences with Ultomiris (ravulizumab-cwvz). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. “I dabbled in words and found they were my life,” Irish poet Patrick Kavanagh once wrote. I get…
I admit it. I’m a nerd. I like the science gobbledygook. I thoroughly enjoy digging into the PubMed catalog of biomedical articles, part of the National Center for Biotechnology Information. But even I can admit that when I tried to explain the science behind how myasthenia gravis…
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