I still have much to learn about my brother’s battle with MG
He's kept many of his health struggles private over the years
Inside every person we know is another part of them we don’t know anything about. As adults, we often hide our pain, either out of pride or to spare others from worrying.
My twin brother, Aaron, was diagnosed with myasthenia gravis (MG) in 1999. But I didn’t realize until a few years ago how little I knew about his personal life with the disease. He’s a private man, and to be fair, I never wanted to push him to talk about specific details if he didn’t want to.
Still, as a sibling and his twin, don’t I have a responsibility to ask more complicated questions and not make assumptions about his well-being? But how do I know when I’m being overbearing or intruding on his privacy?
Life after eye surgery
Aaron is now recovering from successful strabismus surgery to correct badly misaligned eyes. For decades he’s worn dark sunglasses in public to hide his crossed eyes.
I spoke to him after his surgery. He’s doing fine except for some bothersome side effects. His eyes are often red and irritated now. Immediately after the surgery, he complained that his tears were overflowing. Now, he says, his eyes are dry and itchy. He has to use eye drops to keep them moistened.
Additionally, he’s constantly fighting the urge to rub them, which his doctor warned against. He was given gauze and temporary eye patches to cover his eyes while sleeping so that he won’t aggressively rub his eyes. It’s a lot of physical discomfort to endure.
While his eyes now look straight forward, they’re also locked in place. Because of MG, he can’t move them horizontally or vertically.
Doctors also advised him to avoid exercising for at least a month. He complained to me about how that makes him feel trapped in his house. He’s going a little stir-crazy, he said. Before he was diagnosed with MG, he’d been a fitness fanatic, but the disease has limited the physical activities he used to enjoy. Now, post-surgery, he has to sit at home for a month to recuperate.
People with MG have enough problems with muscle weakness, but the condition also causes many secondary issues and aesthetic problems.
What Aaron said next made me realize how much emotional turmoil he’s been handling by himself all these years because of his MG symptoms. He remarked that although he hated the side effects of the strabismus surgery, he’s happy not to be dealing with double vision anymore. I was absolutely floored when he said that. He’d mentioned the double vision before, but he’d never talked about how it was a constant burden for him. He often had to focus on using a single eye to look at something. He often had headaches as well, an issue that went on for years.
I’ve lived in Manila, Philippines, since 2017, while Aaron lives in the U.S., but we’d been near each other or spoken every day since we were born. Yet I didn’t know the extent of any of these issues. That was OK, he said, because people must deal with their pain alone, right?
Maybe he felt that since there was nothing anyone could do, he didn’t want to worry anyone.
I’m not my brother’s keeper, but as his twin, I should know these things, even if it’s just to commiserate. Aaron has kept a lot of pain to himself, and while I can’t take it away, I want to know as much about it as he’ll tell me so that he never feels alone.
The people closest to us in life are typically the ones we know the most about. I still have much more to learn about my twin brother.
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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