Columns

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,…

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…