I try not to be obsessed with assessing my symptoms of myasthenia gravis every morning. I try to let things be and simply accept whatever my body decides that day. But it always ends the same way. I am in pain, and I am not healthy. A sad reality…
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Last week, my husband rescued me from feeling like the Scarecrow in “The Wizard of Oz” — as if I didn’t have a brain, weighed down by stubborn brain fog that lingered far too long. He wrote about his perspective on my breast reduction surgery, which made me realize…
I was shocked when I learned recently that my twin brother, Aaron, had suddenly become lactose intolerant at age 50. He was diagnosed after becoming violently ill from adding cheese to a beef empanada. It was quite a blow to him. As New Yorkers, we grew up on milk and…
People have always searched for explanations when confronted with suffering that feels arbitrary or unjust. Before modern medicine, illness was blamed on gods, fate, moral failure, or contagion of the soul. In “The Plague,” Albert Camus described how people cling to meaning in the face of senseless disease, warning…
I was recently asked if I choose to protect my loved ones from the reality of my myasthenia gravis (MG) by hiding certain parts of the disease so they won’t worry. The question made me realize something I’d never clearly named before: I wear a constant mask. I cover…
This week was jam-packed with appointments. When it came time to sit down and write or edit something worthy of y’all, my brain gave me the big ol’ middle finger for multiple days in a row. Enter my husband. I’ve talked about him before. He has been my caregiver…
As I chatted recently with my twin brother, Aaron, on a video call, I noticed he was sipping a smoothie. This was very odd to me. Aaron is a serious fitness nut, and before he developed myasthenia gravis (MG), he was always exercising. But…
Some days I feel like a vampire, constantly seeking fresh energy to nourish myself and keep going. From my small experience with other people living with illness, I have learned that each of us has a secret book of survival. The following is mine, to help me confront life with…
Living with myasthenia gravis (MG) teaches you one thing pretty fast: This disease doesn’t move in straight lines. It zigzags. It doubles back. It changes the rules midday just to keep things spicy. One morning, I can get dressed and feel almost hunky-dory. But then, on a day before…
Some days I wake up feeling surprisingly good. The pain is quiet, my body feels energized, and for a moment, it feels like myasthenia gravis (MG) is taking a break. You’d think I’d simply enjoy those moments, live them fully, and be grateful. But I never do. Instead, they…
Recent Posts
- In public, my twin brother outsmarts MG with cold air and thick skin
- One troubling aspect of chronic illness is when I find myself losing empathy
- Most MG patients in US start therapy without lab confirmation of disease
- Even with myasthenia gravis, ‘you still have to get up in the morning’
- New patient registry aims to collect real world evidence on MG in US