I had just started a video call with my twin brother, Aaron. I live in Manila, Philippines, and he still resides in our hometown of New York City. It felt good to see him. I was pleased to see that the strabismus surgery he underwent to correct…
Columns
Depending on the kind of person you are, you might react differently to the idea of being responsible for someone who needs help. Recently, I was watching a YouTube video in which the creator made a point about feeling guilty and “sorry” for people with disabilities. That hit me deeply.
Ever since I was a kid, I’ve had my own version of events. I remember climbing a mountain when it was only a small road, lifting heavy weights when I was only rearranging furniture. My memories were always heavier, longer, more intense than reality. One day, my boyfriend and I…
One of the strange mercies of living with myasthenia gravis (MG) is that it teaches you to hold life gently. Every breath and every moment of strength can feel borrowed. MG serves up daily reminders that endurance is grace. Chronic illness makes us students of impermanence and demands that we…
I know none of the symptoms of myasthenia gravis (MG) directly affect how I look. There’s no sudden body change or visible sign that screams “something is wrong.” But anything that changes your daily routine inevitably shapes the way you eat, the way you dress, the way you move…
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…
Recent Posts
- Antibody levels may help track disease severity in children with MG
- I’m learning which conversations are worth having, and which ones aren’t
- Guest Voice: A strabismus diagnosis may have been my MG journey’s start
- MG patients 2 times as likely to have other autoimmune diseases
- What not to do when living with myasthenia gravis