Small wins are big ones when living with myasthenia gravis
It's important to highlight the victories as well as the struggles
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I was having a spirited discussion with my twin, Aaron, about the upcoming “Avengers: Doomsday” film when I suddenly noticed something. His eyes moved, just a little, and his eyelids weren’t drooping!
Normally when I talk to him, his pupils don’t move or his eyelids droop due to myasthenia gravis (MG). But this time, Aaron’s eyes looked healthy. His facial expression was calm and natural. I know he has MG, but for the first time in a long time I could look at him without thinking about the toll MG has taken on his body.
It made me realize that sometimes, unintentionally, I only see my twin through the aesthetic prism of how MG affects his body and spirit. But why haven’t I written much in this column about Aaron’s health triumphs when they happen?
Aaron had strabismus surgery to relieve severe eye misalignment back in 2024. The surgery worked, and his pupils were set forward, but he still couldn’t move them. He suspected this might be permanent.
But as we chatted on the video call, I noticed Aaron’s pupils moving slightly, almost imperceptibly. I did a double take. I asked him if his eyes were moving, and he said yes, as if it were no big deal.
He moved his face closer to the screen and wiggled his pupils a little from side to side. It wasn’t a full range of motion, of course, and it seemed like it required a lot of concentration and effort. But he did it.
I wondered why Aaron hadn’t told me about the breakthrough. Perhaps he’s just used to keeping his feelings to himself. But I think he deserves to have positive developments praised, too.
Aaron has said he was grateful to have the surgery, but also frustrated because it didn’t feel like enough. It felt like one step forward and one step backward. He said he didn’t understand why such a major surgery could fix severe eye misalignment but then lock his eyes in a forward-looking position.
I could tell he was happy that his eyes were no longer completely locked. I told him for several minutes how great he looks. I realized that if I hadn’t been paying attention, he probably wouldn’t have said anything about it.
As a result, I promised myself I’d ask more about his health victories moving forward. Every health win against MG, no matter how small, deserves to be praised.
Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.
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