Columns

Soon after I was diagnosed with myasthenia gravis (MG), my neurologist told me that keeping track of my symptoms could be an important factor in successfully treating it. She recommended I keep a daily journal. She told me that MG is a snowflake disease: Just as…

The past 12 months have been eye-opening for me, bringing opportunities to accept hard truths about my mortality and independence while living with myasthenia gravis (MG). Both of my husband’s parents passed away in the span of just 18 months: his father on Halloween in 2022 and his…

I was caught off guard recently when a friend asked me what one word describes my ability to cope with the ups and downs I’ve had since my 2020 myasthenia gravis (MG) diagnosis. I asked if I could give my answer after dessert. As we ate, we reminisced about a…

The first time I heard those dreaded words, “You have myasthenia gravis” (MG), I felt such relief. 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 desire to prove wrong the doctors who’d…

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…