Learning about my twin’s views on myasthenic crisis symptoms

I used to have a quote on my Facebook page that said, “Don’t take life too seriously; none of us is getting out alive.” To my ear the last part of that quote is pretty nihilistic, and I’ve only understood the seriousness of it as I’ve been getting older. I now feel — contrary to the first part of the quote — that we must take every second of life seriously because it could end at any moment.

I’ve recently been interviewing my twin brother, Aaron, about his myasthenia gravis (MG) and its effect on his life. He was diagnosed with MG in 1999, when he was 24. However, our family didn’t talk openly about his disability, at least not often; we tiptoed around it or didn’t mention it at all. We called him Shaft, after the Richard Roundtree movie character, because Aaron always kept a short Afro and wore shades.

With those shades, Aaron was hiding his severe eye misalignment, and my family and I happily played along. Things are different now; these recent chats are the first time in decades that Aaron and I have openly discussed his MG.

I’ve been doing a lot of research on MG topics, and I’m learning about aspects of his condition that Aaron must have known, dealt with, and pondered alone for decades. I recently talked with him about myasthenic crisis, a life-threatening complication of the respiratory system.

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Sometimes a myasthenic crisis happens to those who abruptly stop taking their MG medications. During a crisis, breathing, swallowing, and talking can seem impossible. It doesn’t mean that someone will perish, but a person in crisis might need to be connected to a ventilator or spend months or years relying on an oxygen tank.

“Yeah, a doctor told me about that long ago,” Aaron said.

I was taken aback by Aaron’s laid-back response. He told me once that his doctors feared his MG could affect his lungs, making him unable to breathe or swallow properly. I remembered that, but I didn’t know that a myasthenic crisis could happen to anyone with MG at any point in their lives.

“Yeah,” Aaron said. “Someday I might need an oxygen tank.”

“Doesn’t the sudden onset of a myasthenic crisis worry you?” I said to Aaron, perhaps projecting a little too much.

“I worry about enough things,” Aaron replied. “Can’t worry about that.”

When Aaron replies with curt responses, I know he’s probably uncomfortable with the topic.

As I learned about myasthenic crises, I remembered how Aaron told me he stopped taking his meds for a little while when he experienced partial MG remission a few years ago. I wanted to ask how he could stop taking his meds if he knew a myasthenic crisis was a possible consequence, but I held my tongue.

It should be easy for me to ask, though. I clearly remember the day Aaron went to the hospital for surgery after his MG diagnosis, but I forgot it was for a thymectomy. I wanted to talk him out of getting strabismus surgery to correct his severe eye misalignment, though it turned out successful. Aaron told me that he still experiences MG flares and that hot weather causes him severe muscle weakness.

For decades, I judged him harshly for playing video games too much, even though I understood he was doing it to cope with his MG. He can’t work because of his disease, and he’s now a homebody. Maybe it’s not shocking that he doesn’t want to go into depth, as I do, about the sudden onset of a myasthenic crisis.

I asked Aaron if he’s set contingency plans if a crisis occurs; he assured me he has and that he’s discussed them with his doctor. He also reminded me that he lives with several relatives should an emergency happen. He’s had decades to consider these concerns, so I wondered how I come off when I’m sharing details I just learned about hours or days ago.

It was a hard discussion to have, and not just for Aaron. We are turning 50 soon, and I think often of my mortality. Maybe that’s why he plays video games so much. I take life more seriously now, but I think Aaron’s underlying point was that there’s only so much we can control, so why worry over what we can’t?

Still, someday I want to talk to Aaron again about making better contingency plans as we face our mortality, no matter how uncomfortable it makes us.

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.