In wearing sunglasses, my twin was hiding MG, not trying to look cool

Sometimes we say so much about unimportant things that we leave the important things unsaid. Or, we talk about important things using codes or euphemisms.

After all, some studies suggest that more than 90% of human communication is nonverbal. What is unsaid or implied sometimes carries more weight than our words.

My twin brother, Aaron, was diagnosed with myasthenia gravis (MG) in 1999 at the age of 24. But it’s only been within the last few years that I’ve broached the subject of Aaron’s MG with him. We acknowledged it in our family but didn’t discuss it openly. I never even considered that Aaron had disabilities. Someone suggested to me that perhaps I had survivor’s guilt, which I also hadn’t considered before.

It’s still hard to discuss MG with Aaron, even within the context of openness between brothers, but I do it.

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I recently asked him about his habit of wearing sunglasses to hide his badly misaligned eyes. He’d often have horrible flare-ups of muscle weakness that affected his eyes and resulted in terrible headaches. What was it like for people to be indifferent when he wore shades, and then judge him upon seeing his eyes?

“It is what it is,” Aaron said. “I can’t control how people react to me. I can control only my reactions. I made my peace with that long ago.”

For more than 20 years, Aaron wore sunglasses almost every day in order to feel more normal. He was always praised for his style, but he was also hiding his condition.

‘Shaft Boogie’

Along with being hardcore comic book fans and music lovers, Aaron and I love discussing and critiquing films. One of my favorite genres was the blaxploitation era of filmmaking. We loved the “Shaft” films in which the late actor Richard Roundtree starred as the titular urban vigilante and street hero.

Aaron had a short Afro that he had styled weekly at the barber when he was younger. He also wore sunglasses and a black leather jacket, so our family lovingly called him “Shaft Boogie.” (“Boogie” after the Boogie Down Bronx, our home borough.)

I wonder now if our family did that to avoid focusing on what Aaron was hiding behind his shades. What was it like to hide his emotional pain and eyes for so many years?

So much was left unsaid for so long. The emotional toll is heavy; I’m almost 50 now and have difficulty expressing it.

Aaron recently had strabismus surgery to correct his misaligned eyes. The surgery was a success. His pupils now face forward, but they are locked. Aaron’s MG robbed him of the ability to move his eyes long ago. The surgery only corrected the misalignment.

I had advised Aaron to reconsider having the surgery, as I was worried about potential side effects. So much is still unknown about MG. But after thinking about how long Aaron spent hiding behind sunglasses, I now understand why he spent over a year planning this surgery.

As I shared in a recent column, Aaron’s doctor would like to perform a follow-up surgery to slightly improve the results. Aaron is still considering it. I don’t want him to have more surgery than necessary, but I get it. Who wants to hide who they are every day if they don’t have to?

This is why I’m having these conversations with Aaron; too much has been left unsaid.

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.