Columns

Living with myasthenia gravis (MG) means making daily adjustments, and getting dressed is no exception. What used to be routine is now strategic. Every piece of clothing has to pass the test: Is it comfortable? Will it make my symptoms worse? Can I put it on without feeling exhausted?…

Do you ever use a phrase often without fully appreciating its meaning, especially its meaning to others? I’ve been thinking about the phrase “seeing double” for some time. My twin brother, Aaron, was diagnosed with myasthenia gravis (MG) in 1999, and he lives with a lot of its…

During the month of Ramadan, Muslims all over the world fast from dawn until sunset, meaning no food or drink for anywhere between eight and 12 hours, depending on the region. It’s the holiest month in the Islamic calendar — a time for dedication, reflection, and sharing. But what does…

Since 2020, I’ve been traveling along the myasthenia gravis (MG) road. Sometimes it’s filled with pain, as it was in 2021. We don’t usually think of MG as a physically painful disease. However, the effects of one of the main drugs used to control it, prednisone, can cause…

I bought a car last week, and that’s not even the best part. My sales rep is the star of this show. I’d been looking at trading in my 2018 Dodge Grand Caravan for a few months. I loved that van for what it was. It helped us make the…

“To acknowledge another is to paint strokes of kindness on the canvas of existence.” I was unsuccessful in trying to find the source of this quote, but I like it a lot. As human beings, we want acknowledgment of our ambitions and achievements, as well as our struggles. I write…

When I was a kid, still waiting for my diagnosis, I remember overhearing doctors say, “It might be an orphan disease,” “It could be rare,” “This might be a special condition.” At that time, and even shortly after my diagnosis, I didn’t understand what they meant. I was confident…

Chef Marco Pierre White once observed that “a chef’s palate is born out of his childhood, and one thing all chefs have in common is a mother who can cook.” My mother wasn’t fond of cooking, and while she had a palate for only the best food, my dad…

Note: This column describes the author’s own experiences with intravenous immunoglobulin. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Let’s be real: Living with myasthenia gravis (MG) can be a roller coaster. One day, you’re hunky-dory-peachy-keen, and the…

“It’s the things that are left unsaid that take up the most space in our hearts.” I don’t know who wrote that, but it reminded me about how much has been left unsaid between my twin brother, Aaron, and me. Aaron’s myasthenia gravis (MG) diagnosis in 1999, at the…