My twin brother’s eyes have begun to droop again. It happened during a period recently when I got locked out of my main social media account, and I was busy with work, so I wasn’t keeping in touch with Aaron as much as I usually do. Drooping eyes used to…
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Over the years, I’ve developed an annoying habit of blaming everything on myasthenia gravis (MG). Being aware of it sometimes makes it worse, because I catch myself doing it and still feel unable to stop. It feels like I’m slowly handing control over to MG, one excuse at a…
Last week, I attended a friend’s birthday dinner. Whenever we get together, our conversations remind us why we value each other so much. We always begin with the basics, which change with each passing year. We still ask about things like families and careers, but nowadays, we’re more likely to…
Over the last 15 years, I’ve learned that having myasthenia gravis (MG) means living inside a body that rarely behaves the same way twice. In the early years of my symptoms, long before anyone put all the pieces together, I kept trying to make sense of what was…
For more than 26 years, I avoided talking about myasthenia gravis (MG) with my twin, Aaron. We’re 50 now, and Aaron was in his mid-20s when he was diagnosed, and everything changed. He went from being an intense, exercise-loving, hard-working man to living with a condition that weakens his…
Any job comes with pros and cons, and working while living with a chronic disease highlights the cons in bright colors. While I often talk about my digital career, I never thought to share one of the most physically challenging jobs I’ve had with myasthenia gravis (MG): teaching.
Loving someone with myasthenia gravis (MG) isn’t a rom-com, inspirational-poster kind of love. It’s the sleeves-rolled-up, “we’re figuring this out in real time,” “in sickness and never mind” kind of love. MG doesn’t just change the person who carries it; it reshapes the entire relationship. I’ve lived with this…
My twin brother, Aaron, took advantage of the recent winter blast in New York and went to the gym. With myasthenia gravis (MG), he finds that he has more energy in lower temperatures. Being out in public means having to sometimes deal with people at their worst.
In Algeria, we say that no one truly feels the pain of lava stones except those who have been burned by them before. It’s our way of saying that pain creates empathy, and that suffering opens the door to understanding others. When I was diagnosed with myasthenia gravis (…
Recently, while researching Irish history, I came across a commonly paraphrased quote of James Joyce that I’d forgotten: “Mistakes are the portals of discovery.” I think this resonates with me because living with myasthenia gravis (MG) has taught me how much human discovery comes not from soaring moments,…
Recent Posts
- My twin’s drooping eyes remind me to do better at using my ears
- Does myasthenia gravis really have that much power over me?
- Recovery after MG flares takes many months, even with newer meds: Study
- Severe MG, high corticosteroid dose tied to worse psychological distress
- I’m limiting my news consumption to better manage my health with MG