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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. When I was 8 years old, I spent two years going in and out of Boston Children’s Hospital. During those years,…

If there’s one lesson the Army drilled into me that still applies today, it’s hurry up and wait. I thought I’d left that phrase behind, along with my combat boots and field rations, but living with myasthenia gravis (MG) proved me wrong. That old idiom fits perfectly in…

I do a lot of psychological and spiritual work on myself, and, because I do this work, I’ve come to believe that I am in tune with my body. Every day, from the moment I wake up to the moment I go to bed, I pay close attention to what…

I vividly remember sitting in my third-grade classroom near the end of a school year. Sunshine always filled the classroom at the end of the year, particularly by 1 p.m., making it perfect for an afternoon nap. Those days were unbearable because of the heat, but also because the final…

My twin brother, Aaron, and I are getting older and looking for ways to make our daily lives more convenient. I didn’t see him turning to an electric scrub brush to make washing dishes easier, however. I called him the other day and watched him using one, a small appliance…

I might be the most curious worker on the planet. I love learning new things, discovering novel industries, and exploring what makes people tick through their work. That’s one of the things I enjoy most about working in social media. Depending on the client, I get to dive into different…

“What you aim at determines what you see.” — Psychologist and author Jordan B. Peterson For centuries, this deceptively simple truth has echoed through philosophy, faith, and medicine. For those of us living with myasthenia gravis (MG), it resonates with force. MG can feel like a thief. It may…

Let’s be honest right out of the gate: Grief stinks. It’s messy, exhausting, and sneaky. And if you live with a chronic illness like myasthenia gravis (MG), grief isn’t just about losing people you love; it’s about losing versions of yourself you never thought you’d have to say goodbye…

The very first “code” my mom and I cracked together came long before I even had a diagnosis. Back when I was just a kid with mysterious symptoms no one could explain, we noticed that one thing always seemed to help: sleep. No matter how much pain, weakness,…

Life with myasthenia gravis (MG) often feels unpredictable. One day, my legs are steady enough to walk Pablo, my French bulldog, around the block. The next day, weakness makes standing at the kitchen counter a challenge. Some of the muscles MG attacks control breathing, swallowing, lifting, and keeping one’s head…