MG and the chain of tribulation, patience, experience, and hope
When I read Paul the apostle, I can’t help but think he was writing about me
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“And not only so, but we glory in tribulations also: knowing that tribulation worketh patience; And patience, experience; and experience, hope.”
The apostle Paul was not writing about myasthenia gravis (MG) with those words. He was speaking instead about the whole human condition, the arc of a life lived in faith under pressure. But when I read his words now, after years of living with this disease, I can’t help but feel that he was somehow writing about me. Not just me, but about all of us who carry within a weight that we realize slowly requires us to learn a new way of coping.
Tribulation, patience, experience, and hope. Four words, one chain, and a whole education. Let me tell you what that education has looked like from the inside.
Tribulation
There are days when MG announces itself with everything it has. The diplopia (double vision) arrives first. Suddenly, the world is twinned and unreliable. Then the dysarthria (difficulty speaking) shows up. Suddenly, speech is slurred as words know what they want to be, but can’t quite get there. Next is dysphagia (difficulty swallowing), which stops you cold and hits with brutal force. The simple act of swallowing, which the rest of the world does without a thought, becomes something that requires action and attention. On those days, tribulation is not an abstraction. It is the body itself, struggling with the most basic transactions of being alive.
And then there is the other kind of tribulation, the slower, grinding kind. It is not uncommon for me to spend five or six hours in a single week on hold with insurance companies and government agencies. Hours of my life, suspended in telephone purgatory, fighting for medications and authorizations and referrals that should not require fighting. If the disease itself is a storm, the bureaucracy is the aftermath. It’s the waterlogged furniture and ruined floors.
Patience
You do not choose patience with a chronic illness. It is assigned to you. The tinny, annoying music that accompanies being put on hold teaches it. The flares teach it. The slow recalibration of a body that does not follow schedules teaches it. What I’ve learned, over years, is that patience is not the same as passivity. A patient man is not a silent man. He is simply a man who has learned to wait without losing himself.
Experience
This is where Paul’s chain surprised me most. Because experience — real experience, the kind that changes you — turned out to mean something I did not expect. It meant learning that I knew things the experts did not.
When I was diagnosed, I was hesitant to question the professionals. They had the degrees and the credentials. Who was I to push back? I learned the answer to that question during my first myasthenic crisis, when I was hospitalized and needed a port placed to facilitate plasmapheresis. I pushed hard for the port to be placed in my groin even though the doctor objected. In another instance, I was commended for noticing that the needle that was about to be used for the procedure hadn’t come from a sterile package, and that the person doing the procedure hadn’t washed their hands.
Experience is knowing that your life may depend on your own attention. You are not just a patient. You are the foremost expert on your own body, and that expertise is not a lesser thing than a medical degree. It is a different, irreplaceable thing.
Hope
Alexandre Dumas, at the close of “The Count of Monte Cristo,” left his readers with a letter. In it, the character Edmond Dantès, a man who had suffered imprisonment, betrayal, and the long exile of his own rage before finding his way back to himself wrote that “all human wisdom is contained in these two words: Wait and Hope.”
Living with MG requires exactly this. Not the passive hope of wishing things were different, but the active, disciplined hope of having been through enough to know that things can change. A bad week is not a permanent address. The body that fails you on Tuesday may surprise you on Friday. The God who built patience into the architecture of suffering did not forget to build a door.
Paul knew this. Dumas’ Dantès knew this, too.
“A merry heart doeth good like a medicine,” goes the proverb, but so does a heart that has learned, through tribulation, patience, and hard-won experience, to hope anyway. That’s no small accomplishment.
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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