Columns

For the past three weeks, my struggles with fatigue have greatly affected my life. I think others who, like me, have been diagnosed with myasthenia gravis (MG), as well as those who care for them, understand this experience. One minute life is rolling along and everything seems…

What’s the first thing that comes to mind when someone tells you they’re “doing the carnivore diet”? If you’re like my husband, who works in the fitness world, it might just be an eye roll. If you’re a vegan or vegetarian, it might be disgust. What if I told…

“Review scientific articles only and summarize the content to explain what treatments are available for a person with myasthenia gravis experiencing breathing difficulties due to diaphragm and intercostal weakness.” This was the question I posed to Microsoft’s Copilot software, the company’s version of ChatGPT, both of…

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…