What courage looks like in daily life with myasthenia gravis
We never know what each day will bring, but we begin it anyway
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It’s sweltering here in Texas. The air quality is abysmal, and a sense of “blah” seems to be everywhere. For somebody like me living with myasthenia gravis (MG), daily life is significantly more difficult this time of year. I’m forced to be semi-monastic, only crawling out of my lair, vampire-like, after sunset.
July has special meaning this year: It’s our country’s 250th birthday. The weather may have reduced my interactions with the outside world, but it has also given me unanticipated time to once more play the role of historian. I didn’t expect this to lead me to find a link between my birthplace and my life with MG.
In Malden, Massachusetts, my hometown, Bell Rock Cemetery is a well-tended, scenic space. Within its walls, there’s an almost palpable sense of the past. As a kid, I was familiar with the cemetery. Like most Maldonians, I knew the importance of Bell Rock. Some of those buried there were important individuals linked to the beginnings of the United States. However, by the time of my childhood, the details of those lives had been forgotten. I did not know back then that beneath those stones lie 40 soldiers, veterans of the American Revolution. These Maldonian ancestors unselfishly answered a call that had no guaranteed outcome and no promise of return.
On my boyhood journeys, I frequently passed Bell Rock. However, it wasn’t the only significant place along my pathways. Many of the civic buildings, businesses, and homes I passed were built before 1776, spectators to events we read about in our school history books.
Those schools taught us that Malden held a particular distinction in the story of American independence. It was the first town in the 13 colonies to vote for independence, doing so in May 1776, two months before the Declaration was signed.
Beginning anyway
My celebrations this month have been accompanied by MG-related struggles. The disease demands that I begin each day aware that, no matter what physical and emotional struggles lie ahead, I plunge in and see each day through.
Over the past week, I’ve found myself thinking about what courage actually looks like, and how often we fail to recognize it because it doesn’t announce itself.
Atticus Finch, the fictional lawyer in Harper Lee’s “To Kill a Mockingbird” (and my nephew’s namesake, a fact that gives the character a kind of living presence in our family), understood something important about courage. As Lee wrote: “I wanted you to see what real courage is, instead of getting the idea that courage is a man with a gun in his hand. It’s when you know you’re licked before you begin but you begin anyway and you see it through no matter what.”
The men buried at Bell Rock did not know they would win. The farmers and tradesmen who voted in Malden’s town meeting in the spring of 1776 did not know the outcome. They only knew that they held strong convictions and a willingness to begin. These were their only “sure things.”
I think about that on the harder days with MG. The days when my grip is unreliable and my voice fades before I finish a sentence. Days when the bureaucracy of illness grinds against the simple desire to live with some dignity. Those are the days I do not feel like courage’s poster child. I feel licked before I begin. But I begin. Most of my MG compatriots do the same. That is the thing about quiet courage: It tends to look, from the outside, like ordinary life.
When I was young, I did not understand what Bell Rock Cemetery held. I wasn’t ready to understand it. Some things wait for us to catch up to them. My nephew Atticus carries a name from a story about moral courage, about doing the right thing in a broken system, about beginning anyway. He will carry that name his whole life, probably never thinking much about it on ordinary days. That is fine. That is how it works with the things worth holding. They carry us as much as we carry them.
Two hundred and fifty years ago, some women and men in my hometown decided to begin. They are in the ground now near where I used to walk to school. I did not know them then. I am glad to know them now.
Today, whatever fight MG brings, know that beginning to once again fight this disease’s visible and invisible battles is enough. It always has been. It always will be.
If we see the fight through, run the race, and keep the faith amid MG’s challenges, we’ll gain honor akin to that of the 40 in Bell Rock Cemetery.
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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