Sifting through regret over things left unsaid
A columnist has a heartfelt conversation with his brother, who has MG
“It’s the things that are left unsaid that take up the most space in our hearts.” I don’t know who wrote that, but it reminded me about how much has been left unsaid between my twin brother, Aaron, and me.
Aaron’s myasthenia gravis (MG) diagnosis in 1999, at the age of 24, significantly altered his life, preventing him from working, causing severe eye misalignment, and requiring him to take medications for the rest of his life to stave off muscle weakness.
MG altered Aaron’s fashion style. He wore sunglasses for over 25 years to hide his eye misalignment. What’s most striking to me about this situation is how much Aaron kept quiet about his plight.
We’re twin brothers, but until recently, when I started writing this column, we’d rarely talked about his MG. In our last conversation, I completely misremembered a thymectomy procedure he’d had in 2000 after his diagnosis.
I appreciate the conversations we have now about the subject. But I wonder if I should’ve had these talks long ago, without the prompting of this column. If silence is deafening, what does it say about me that so much has been left unsaid for so long?
Overthinking it
Aaron was a bit baffled when I asked him if it ever bothered him that we’d gone decades without discussing his MG.
“No, it bothered me that I had it,” he replied. “I didn’t even want to deal with it back then. I didn’t want to discuss it much, either.”
I can attest to that. Aaron assures me that while he still has MG flare-ups and deals with muscle weakness, they aren’t as bad as when he was diagnosed. I remember those early days, when he could barely use his arms and fingers. He must’ve been so angry and frustrated.
But that’s my point: So much was left unsaid that I now have to go back in time to remember things and extrapolate these thoughts. Should I have asked these questions back then?
Aaron also never spoke about the emotional toll that MG had on him all this time.
“I get what you’re saying,” he said when I brought up this subject, “but we all had things to deal with on our own as adults.”
“It’s hard for me to ask you questions about MG,” I acknowledged. “It’s hard to remember those early days, how it affected you, and how we went out of our way not to talk about it. It feels so weird to think about now.”
Aaron assured me that I shouldn’t feel that way, and that his MG is much more manageable now. “The scary part is over,” he said.
We then changed the subject to our shared disappointment in the film “Captain America: Brave New World” and the future direction of the Marvel Cinematic Universe (MCU). We also have zero enthusiasm for the new Superman film, and we spent another 20 minutes discussing how we would improve the film divisions of both the MCU and the DC Universe.
It was a welcome diversion. I can’t do anything about what was left unsaid. I’m grateful that we now have these open discussions. What matters is what we say to each other now and in the future.
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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