Even with myasthenia gravis, ‘you still have to get up in the morning’

Recently, while researching Irish history, I came across a commonly paraphrased quote of James Joyce that I’d forgotten: “Mistakes are the portals of discovery.”

I think this resonates with me because living with myasthenia gravis (MG) has taught me how much human discovery comes not from soaring moments, but from awkward ones. Especially moments that involve chairs.

For most of human history, rising has been synonymous with progress. We rise in our professions. We rise in status. We rise to the occasion. Rising is supposed to be graceful, upward, and affirming. Which makes it deeply unfair that one of the most revealing and humbling daily challenges of MG can be something as mundane as getting up from a chair.

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Before MG entered my life, I never thought about standing up. Chairs were temporary pauses. Standing was automatic. Now, rising is a negotiation that often involves strategy, timing, and humility.

Comedian George Carlin once said, “I don’t have a fear of heights. I do, however, have a fear of falling from heights.” That line captures the MG experience perfectly. It isn’t the “getting up” that worries me, it’s the moments in between. The embarrassing, public pauses when you look fine sitting down, and then suddenly you try to rise, and you look anything but fine.

That’s the hardest part. You’re seated, chatting, looking perfectly normal. Then you decide to stand. There’s a forward rock. Maybe you make a second attempt. Arms get involved. Observers may wonder if you’re about to deliver remarks. Nothing draws attention quite like someone who appears to be wrestling an invisible opponent while exiting a chair.

Once again, I need to drag my mother into the conversation. When things got difficult, she used to say, “No matter what happens, you still have to get up in the morning.” While there was a philosophical element to this, she also meant it literally. When morning rolls around, you need to get out of bed, put your feet on the floor, and get about things. Period, full stop.

Living with MG has given the advice more urgency. Getting up isn’t optional, even when it’s slow. Even when it’s awkward. Even when it’s witnessed.

There is a medical reason this matters. Difficulty arising from a chair is not incidental. It’s one of the Activities of Daily Living measured in the MG-ADL scale, one of the most commonly used clinical tools for assessing MG severity.

Along with talking, chewing, swallowing, breathing, vision, and arm function, rising from a chair is tracked because it requires sustained strength in the large proximal muscles of the hips and thighs. These are muscles that MG commonly weakens early. Rising demands repeated, coordinated muscle firing against gravity. MG disrupts that neuromuscular transmission. Strength may appear present for a moment, but endurance fails quickly. I used to wonder why this particular task made the list. Recent events taught me why. It turns out that chairs don’t lie.

Political scientists often repeat the saying, “Where you stand depends on where you sit.” Living with MG has given that idea a physical meaning I never expected. Whether you stand at all may depend, quite literally, on where and how you sit and on the steps you follow when rising.

The novelist Samuel Beckett distilled human perseverance when he wrote, “You must go on. I can’t go on. I’ll go on.” That sentence feels tailor-made for life with MG. We may not rise smoothly. We may not rise quickly. But we rise. Scripture offers the same quiet insistence in Proverbs 24:16: “For a just man falleth seven times and riseth up again.”

History reminds us that progress is rarely elegant. For those of us living with MG, it sometimes comes one chair at a time.

So, yes, rising still matters, just not in the way the motivational posters promised. For people with MG, rising isn’t about climbing ladders or chasing titles. It’s about persistence in small, visible moments. It’s about refusing to stay seated when our bodies insist we should. And if getting up requires armrests, momentum, patience, and a sense of humor, so be it. That still counts as rising.

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.