“The spirit indeed is willing, but the flesh is weak.” Lately, I’ve felt that this Bible verse could’ve been written about me and my muscles. The last week or so has served as a reminder that fall fatigue is indeed a real phenomenon. This time of year always plays tricks…
Columns
Most folks have never heard of myasthenia gravis (MG), and honestly, I don’t blame them. It’s a rare autoimmune disease that even some doctors initially miss. MG plays tricks with the connection between nerves and muscles, kind of like static on a phone line. One moment, the message from…
Note: This column describes the author’s brother’s experiences with Soliris. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. I had promised to video call my twin brother, Aaron, as he received a Soliris (eculizumab) infusion, but I felt a…
When November rolls around, you start to notice more mustaches sprouting across faces — some fuzzy, some patchy, some magnificent. They’re part of the Movember movement, a global effort to raise awareness for men’s health, especially mental health, suicide prevention, and cancers that affect men. But when I see…
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…
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,…
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