My twin’s drooping eyes remind me to do better at using my ears
I initially dismissed my brother's concern about his eyes, and came to regret it
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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 be a recurring complaint of his. It’s a major symptom of his myasthenia gravis (MG), along with muscle weakness and eye misalignment.
When we were finally able to reconnect and he told me about it, I acted like it was no big deal. “I’m sure it will go away on its own,” I said.
I remember seeing his eyes involuntarily droop on video calls, but because it would come and go, I didn’t really appreciate what he was saying. But after the call, I realized that he hadn’t complained about drooping eyes for a long time.
A second chance to listen
When I thought again about having dismissed his concern, I found myself wondering how many times I’d done that over the years — years when we barely talked about MG.
I called him again, with the intention of being more mindful, and asked him about his symptoms to better understand what was bothering him. He said his eyes began drooping again in mid-February.
“I woke up in the morning, and everything was good,” he said. “By the afternoon, my eyes were drooping again. I got my eyes fixed. Now this.”
Aaron had successful strabismus surgery to fix his severely misaligned eyes in late 2024, and he also underwent a change in his Soliris (eculizumab) infusion therapy. He said he couldn’t recall any serious drooping symptoms during that time, and that maybe both helped keep the problem at bay until now. Having this problem return after a long time without it was clearly bothering him.
Studies show that MG can go into remission, but this may be temporary, and its symptoms may reappear.
Aaron said he focuses on staying calm and using music therapy when he gets frustrated, and he’s open to getting a second opinion if the eye drooping continues.
I felt bad for not paying attention to how much this was bothering him when he first tried to bring it up. It reminded me of how I didn’t want to discuss Aaron’s disease in the past to spare my own feelings. I realized that this may have made him feel isolated when we were growing up. I have so much to learn about MG.
“We’re good,” Aaron said to me. “You did nothing wrong.”
I appreciate him saying that, but I want to do a better job of listening to him.
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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