Myasthenia gravis brings into focus what is essential in our lives
An 18th century classic helps put life with MG into perspective
Published in 1759, Voltaire’s satirical novella “Candide” follows the adventures of its protagonist as he travels the world. Along the way, Candide encounters the suffering, misfortune, and ambiguity that is characteristic of human life.
A college philosophy course was my introduction to this masterpiece. I can visualize myself walking across campus in a snowstorm with a copy of the book in my backpack. In this vision, I see a young guy oblivious to the influence the novella would eventually have on his later journey with myasthenia gravis (MG).
Near the end of the tale, Candide remains uncertain about the nature of contentment and peaceful, happy living in a world filled with negative forces. Then he and his companions encounter a happy Turkish farmer. Equating money and possessions as sources of contentment, they assume the farmer is a wealthy landowner divorced from the ordinary struggles that consume most people’s lives.
The farmer tells Candide the secret to his peace of mind: “I never trouble my head about what is transacting at Constantinople; I content myself with sending there for sale the fruits of the garden which I cultivate.” In other words, he doesn’t stress over what he can’t control.
Candide inculcates the farmer’s advice and decides to live each day focused on the things he has some control over. When there is violence in Constantinople, Candide’s friends can’t understand why he retains his equanimity. When they interrogate him about it, Candide responds, “All that is very well, but let us cultivate our garden.”
Cultivating our own gardens
For seven years, I chaired our school’s history department. Each year, my team would reach a point of irritation with everything from campus administration to inane state and federal mandates and other forces beyond our control. When this happened, I’d gather the team to read a selection of “Candide.” This exercise always helped to restore some equilibrium and lessen the tensions. Inevitably, someone would mention Richard Carlson’s book “Don’t Sweat the Small Stuff . . . and It’s All Small Stuff.”
When I was diagnosed with MG four years ago, many things caused me to “sweat.” I spent months in hospitals. Large doses of prednisone resulted in avascular necrosis in both hips. I temporarily lost the ability to walk and drive. One day, my legs gave out and I found myself lying in bodily waste, unable to move. Like a character in a Greek tragedy, I was brought low.
I coped with these negatives as best I could. However, eventually, the pressure was too great, and my emotional state gave out. I was lucky, though, because I had the support of loving family and friends, and excellent professionals who carried me through this difficult time.
I’ve learned that most of life is composed of small stuff. Time spent in hospitals is an opportunity to catch up on reading. My support network drove me wherever I needed to go. People land in their own waste all the time. When you live with a rare disease, this isn’t uncommon. You get up, clean off, and wipe up the mess. Then you get on with the day. You cultivate your garden.
Over a decade ago, I bought an old barn plank that an artist had decorated with the title of one of my favorite hymns. I put it under a window thinking I’d eventually find a spot for it. I came to like its location and never moved it. This week, I realized that it’s exactly where I had my infamous fall. If I had turned to my right, I would’ve read, “It Is Well with My Soul.”
I know the future will bring more falls, more experiences that will embarrass and even humiliate. I’m OK with that. I’ll tend to my garden knowing that whatever happens, “all shall be well, and all shall be well and all manner of thing shall be well.” I hope that all of my MG compatriots, along with those in the broader rare disease community, will come to know the wisdom and peace prompted by taking care of one’s own garden.
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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