Being a homebody suits my twin who’s living with MG
My brother prefers to stay at home, especially during a flare-up
I started traveling as a backpacker when I was 19 years old, back in the 1990s. I spent a semester studying in London in 1997. As a naive kid from the South Bronx in New York City, I found it mind-blowing to be in countries where people spoke English but had such heavy accents that I couldn’t understand them. I was also a lot more outgoing back then; I’d go out of my way to say hello to strangers and try to strike up spontaneous conversations.
My twin brother, Aaron, has never had a passport, has never traveled, and is a homebody. Aaron was diagnosed with myasthenia gravis (MG) in 1999 at age 24, though he’d started noticing muscle weakness a few years earlier. He underwent thymectomy surgery a year after his diagnosis, although I forgot all about it until recently.
My ongoing conversations with Aaron about MG have made me reconsider how he dealt with his condition in the past. My family just didn’t talk about Aaron’s MG for a long time. He had severe eye misalignment for decades, often wearing sunglasses to hide it, and finally underwent a successful strabismus surgery late last year.
However, it was only recently I thought to ask him about his social circle and how strangers treat him when they notice his MG symptoms.
Why Aaron prefers to stay at home
Aaron is a nice, charismatic guy, but others can be cruel and superficial. People are often judged by their appearance — especially those with severe eye misalignment. While Aaron wore sunglasses for a long time, he couldn’t always hide every symptom of MG. And in New York City, complete strangers will happily offer running commentary on anything they see.
“Do people give you funny looks or make comments if they notice your muscle weakness after an MG flare-up?” I asked Aaron.
“Yeah,” he replied. My twin often says a lot with few words.
“Can you give me an example?” I asked.
“I can’t move as fast as I used to, you know,” Aaron said. “I don’t even like to run anymore because I’m afraid I might fall. Sometimes people in the neighborhood see me moving slowly while running errands.”
“What do they say?” I asked.
“Sometimes they’ll ask me, ‘What happened to you?’ or ‘Why are you moving so slowly?'”
In our South Bronx housing project, where Aaron still lives, everyone knows each other. You’re bound to see the same people at the mailbox, supermarket, or just standing outside. Many neighbors have noticed a change in Aaron, but they don’t know what caused it.
“Weird how people want to mind their own business until they are nosy,” Aaron said.
“So, how do you respond?” I asked.
“I usually don’t,” he replied. “One person kept asking, so I just said I fell at an old job and got injured. Usually I say nothing and keep it moving.”
I wanted to ask him about his social life and whether he talks to strangers, but I already knew the answer. Aaron became an avid gamer because he loves it, but I think it also helps him cope with his MG symptoms in private.
“When was the last time you talked to a stranger?” I asked.
“I don’t do that,” Aaron said. “Besides family, I only talk to people I know.”
“Have you ever been in a situation where you met a stranger who noticed your symptoms, and you explained MG to them?”
“No,” he said. “I don’t talk to anyone besides you and a few people.”
“Are you content being a homebody?” I asked.
“It is what it is,” Aaron said. “If I don’t have to go out, I don’t. I’d rather be at home.”
I realized that MG has limited Aaron in many ways, and he must always be proactive about protecting his health and controlling his emotions when he goes out. He is a homebody in general, and these days, I am, too, but based on our conversations, it sounds like his symptoms are very noticeable during MG flare-ups.
Sometimes I hate human nature. It’s why I’m not as outgoing as I used to be. People can be so nosy when they see something odd, but lose interest in the explanation if they can’t understand it. I’m hopeful I can spread more awareness about MG with this column, but it’s hard for strangers to care about such things until they are personally affected.
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.
About the Author
Duncan Black
How sad! Your brother needs to get out of a hostile urban environment...move South or West where people are warm and loving and care for each other...become involved with a church or charity that is concerned about improving the lives of others and become less introspective. Many people can improve their MG lifestyle by changing their mental attitude.