Reflecting on history can make living with MG a little easier

The final lines of Voltaire’s “Candide” are some of my favorites in literature.

As the story concludes, two of the main characters reflect on the “concatenation of events,” some of which were unpleasant and difficult, that ended in happiness for all. After a summation of their journey, the title character distills events in a succinct summary: “‘All that is very well,’ Candide observes, ‘but let us cultivate our garden.'”

Voltaire’s protagonist realizes that serenity is found in the present. He grasps how little control we have over events and encourages the reader to focus on that which can be controlled.

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February 14, 2023 News by Marisa Wexler, MS

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The way out of darkness

A few years back, on election night, I began receiving text messages from an upset family member. Before turning off my phone, I offered some advice. I told this young adult I’d been here before. We always survive.

Throughout my career as a history teacher, I’ve striven to present history as a lifelong tool that assists one in coping with the “slings and arrows of outrageous fortune.” I maintain that history isn’t boring. But it can be presented by boring individuals. Presented properly, history points the way out of darkness and despair.

My young family member hadn’t lived through many of history’s cycles. During my first trip to Europe, I’d visited Berlin and seen the crumbled wall that once was the “permanent” divide between two cities. I’d lived through the AIDS crisis and witnessed government failure to properly address it. This made for déjà vu when COVID-19 hit.

I also have clear memories of Sept. 11, 2001. Life was never going to be the same again after that, too. While it was never quite the same again, a sense of “normal” did return.

The past two weeks have been distressing. My myasthenia gravis (MG) symptoms went out of control — again. My speech grew nasally, then unintelligible. My eyelids drooped and became ultrasensitive to light. Moving at all took the wind out of me. Constantly dizzy, I was in danger of intubation. I panicked. The MG prison walls tightened, growing closer by the hour.

How could things fall apart so soon after the last crisis? My neurologist and I had developed a plan. The plan had worked — until it didn’t. Caught up in the stress of an MG flare-up, I forgot my historian’s training. I forgot that I’d been here before.

Previous crises demonstrated that with proper attention, life would return to “normal.” This might involve intravenous immunoglobulin treatment, plasmapheresis, altered medications, and other things, but it would happen. For someone who likes certainty, planning, and familiarity, this is difficult. It produces stress that can cause the MG symptoms to worsen.

But things do return to normal. The “prison walls” do crumble. The storm passes. Life goes on. There is comfort in knowing that others have had similar experiences.

Learning from the past

Studying history, one learns the transitory nature of this world. The heyday of Egyptian dominance passed. Rome fell. The fear and panic of bubonic plague came and went. Superstition has gradually been replaced by enlightened scientific exploration. Tyrants are followed by dynamic leaders who seek the benefit of all people. The one constant is our capacity as humans to acquaint ourselves with the past and learn from it.

Living with a rare disease brings all sorts of turbulent experiences. If we stop and reflect, we can see the impermanence of the present. Our knowledge of the past can be a tool we use to create a safe, healthy space. We adapt.

I wish I knew a formula for the creation of such a place. I’m still struggling to figure this out. I’m trying to remain cognizant of all I’ve learned from my study of history. I’m also working to integrate my MG history into this space. The next time my MG flares up — and there will be a next time — I hope I can remain focused on my own garden. I hope I’ll be able to remain a little bit calmer and more centered. With the passage of time, these pieces of calm might knit together into a little garden. Like Candide, I hope to find peace in my little plot of land.

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.