Exploring the mystery of when my twin stopped taking his meds
How I learned about his hope for remission — and his fear it would end
Talk show host Conan O’Brien, among many others, once said, “When all else fails, there is always delusion.” As human beings, we want to believe what we want to believe, even when red flags and truth indicators warn us of the contrary. It can be comforting to embrace delusion when the alternative is a harsh reality.
My twin brother, Aaron, was diagnosed with myasthenia gravis (MG) in 1999 when he was 24 years old. That year, he underwent a thymectomy, a surgery I completely forgot about and misremembered as a tumor removal. The first year or two after that surgery, his MG flare-ups were so severe that his arms barely worked. I realize only in hindsight that he must’ve been overcome by anger for much of his mid-20s.
Aaron also had to deal with the aesthetics of severe eye misalignment, in which his eyes would sometimes point in different directions. That was hard for me to witness. He wore sunglasses as if they were a uniform for decades. He recently had successful strabismus surgery to rectify the issue, but it doesn’t change the decades Aaron spent hiding his eyes behind shades.
Recently, Aaron told me about periods of partial MG remission he experienced a few years ago. He told me that his MG symptoms disappeared so much that he stopped taking his meds for a while. I judgmentally told him not to do that again, but now I feel I glossed over the issue. I should have asked him why he wanted to do that.
‘I wanted it to be over’
From around 2014 to 2019, Aaron experienced instances of partial MG remission. While he acknowledged not taking his meds sometimes during that period, he’d also accepted long ago that he’d have to take his MG meds for life. Since I didn’t explore his reasoning more at the time, I wanted to ask about it directly now.
“You never had a full 100% remission, right?” I asked. “What was it about your partial remission that made you want to stop taking your meds?”
It’s so easy to ask that question, but hard to avoid sounding judgmental. I lived with Aaron for a large part of my life and watched his hardships with MG. I wondered what he experienced that made him stop the meds.
“I wanted it to be over,” Aaron said. I noticed his response was brief.
This subject felt touchy. Aaron told me that remission is now terrifying for him, which I’d never considered. The nature of remission is that it’s usually temporary. Even though he welcomed remission at the time, Aaron would later learn to fear the return of muscle weakness or the need for a new operation.
“OK, dude, but what made you decide you didn’t need to take meds anymore?” I asked again. “I don’t pretend to understand your situation, I’m just wondering.”
“I didn’t want to deal with it anymore,” Aaron said. “The droopy eyes, my muscle weakness, controlling my feelings all the time. It’s hard,” Aaron answered.
“Don’t worry, I always take my meds now,” he continued.
“Dude, you’re a grown man. I know you can take care of yourself,” I answered.
Aaron religiously takes his meds now and never misses a doctor’s appointment. Though I’d originally advised against the strabismus surgery, I’m now glad he did it anyway after the doctor told him it would be safe.
Aaron told me that his MG flare-ups and muscle weakness got worse after he stopped taking his meds, so he learned the hard way to never do that again.
I thought of a story I wanted to share with him. Around 2009, I noticed a pimple on my shoulder. It turned out to be dermatofibrosarcoma protuberans, a rare skin cancer. My delusion made me ignore it for a year before I had it removed. I typically never discuss this procedure, and he may not remember it.
But I wouldn’t be listening to him if I went into that. After all, our journeys are different; I don’t take meds for life.
I’m starting to remember the sporadic periods of remission Aaron would experience. Sometimes Aaron’s severe eye misalignment would disappear, but then his eyelids would droop severely. Even though his eyes are aligned forward now after his surgery, he can’t move his eyes.
Aaron recently told me he still deals with nearly constant double vision, even after the strabismus surgery. From this and his other revelations, I’m understanding why he stopped taking his meds for a while, even if he knew better.
We ended the conversation. This one was hard. He’d never discussed this choice in detail, and he wasn’t comfortable. I know he regrets it, but life gave him an unfair hand.
Everyone is guilty of delusion at some point. The shrewd ones stop when the consequences become clear.
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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