With my twin’s continuing double vision, I don’t know what to say

Do you ever use a phrase often without fully appreciating its meaning, especially its meaning to others?

I’ve been thinking about the phrase “seeing double” for some time. My twin brother, Aaron, was diagnosed with myasthenia gravis (MG) in 1999, and he lives with a lot of its symptoms, such as muscle weakness. Since stress and anger can cause MG flare-ups, he’s spent decades learning how to mitigate both. He hasn’t been able to work since his diagnosis.

One of the most obvious symptoms of MG, however, is severe eye misalignment. Aaron needed strabismus surgery to correct this problem after decades of wearing sunglasses to hide it. While the surgery was mostly successful, he’s still dealing with the aftereffects of the procedure.

Aaron’s eyes are no longer crossed, for instance, but they’re fixed forward; he can’t move them. He’s also still dealing with intermittent double vision. It stuns me that he has to live with these symptoms and stay as calm as possible so he doesn’t exacerbate them.

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Aaron and I are New York City natives, but I now live as an expatriate in Manila, in the Philippines. I’ve recently been complaining to the management of my condo about my TV (which came with the unit, along with the furniture). It’s malfunctioning; the screen is blurry and the images are doubling up. Thus, I’m seeing double whenever I try to watch a film or show. Not only is it jarring, it also induces migraines.

As I texted the administrative office again about the issue, I reflected on Aaron’s experience with double vision. Only recently did I become aware that he’d struggled with double vision and headaches for years because of MG and his eye misalignment.

I’ve only been dealing with double vision with my TV for a few weeks, and it’s driving me mad. I know it’s not the same as Aaron’s double vision; I don’t want to suggest that. In fact, I know I can’t relate to how he’s lived with blurred vision for so long.

Deepening my understanding

When I contacted Aaron via social media, I found him watching an NBA game, but he was happy to take a break and chat. I asked him, as usual, about his health and his eyes. He said his doctor recently suggested a follow-up strabismus surgery to improve his eye position, but he’s still happy with his results.

I asked if he were still dealing with double vision, and Aaron answered promptly. “Yes,” he said, “I still get double vision when I wake up in the morning.”

“Did your doctors say this would still be happening?” I asked.

At that point, Aaron sensed I was worried, even alarmed. I try to talk to him about MG without veering into alarm or pity as much as possible, but it’s hard to hear that double vision has been a feature of his life for many years, and continues to be.

“Yes, the doctors said I would still get double vision,” Aaron said, “but it should fade in time, and it doesn’t happen as much.”

I think Aaron sensed my alarm and wanted to downplay the issue. He’s been downplaying his MG issues for decades, mostly through silence. Maybe he thought I was pitying him, but I wasn’t.

I stopped pushing, and we transitioned back to talking about the NBA — specifically, the New York Knicks’ struggles this season. I think we both wanted to get away from the subject of vision.

I once asked Aaron why he used to stay silent about his MG, and he said, “What could anyone do?” He recently told me that I could ask him anything, but these discussions are becoming emotionally raw, especially for me.

My eyes wander to my malfunctioning flat-screen TV, with its blurry images that cause double vision. It hurts my eyes to look at it for a few seconds. I want to know how Aaron manages daily life with recurring double-vision issues.

Before our chat ends, I think about asking about his day-to-day living with double vision, and if another strabismus surgery would help. I decide to do it another time.

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.