The importance of patience on the MG journey

I’ve always considered myself a patient man. One doesn’t succeed as a teacher without some degree of the trait. But the past four weeks have shown me that life with myasthenia gravis (MG) requires a level of patience I never thought I could achieve. I’ve learned that challenges recur; they don’t go away.

As I struggled during these past few weeks, I came across the words of author David G. Allen: “Patience is the calm acceptance that things can happen in a different order than the one you had in mind.”

Let me explain how this quote helped me make sense of my recent journey. If others who live with chronic illness can reflect on its meaning and grasp the truth behind the words, it may help with their journey.

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Facing continued challenges

Since my MG diagnosis in June 2020, learning about the illness has been a key part of my life. My dad lived with the disease for his final 13 years, so I had some familiarity with it. Nevertheless, I researched online and spoke with neurologists, nutritionists, and other medical professionals. I wanted to educate myself as much as possible about MG. I thought I knew a great deal about what could happen to my body.

I’ve since experienced four hospitalizations, two surgeries, two rounds of plasmapheresis, two myasthenic crises, numerous trips to the emergency room, vision difficulties, slurred speech, fatigue, and trouble holding my head upright. I believed no other physical challenges were possible.

Then, in December, the muscles in my hands weakened. At first, I thought nothing of it. Then it became difficult to hold a pan while cooking. This progressed to the point where I could no longer make the bed or use my computer. All my old fears and anxieties came flooding back.

The physical challenges of MG are still here.

Throughout my professional career, I maintained disability insurance in case something was to prevent me from working. For 25 years, I never missed a payment. When MG forced me to leave my job, I assumed the insurance would keep me financially solvent. I didn’t know that it would take almost a year of wrangling with the insurance company before my payments would begin. Once they did, I thought I could focus on my physical challenges.

Then, last October, I received a letter from my disability insurer that informed me I was no longer disabled, and so my payments would cease within 30 days. Once again, my financial situation was precarious. For the second time I had to hire an attorney. I still have no income.

The financial challenges of MG are still here.

Earlier this year, I began treatment with a new drug, and my hopes for success were extremely high. Somehow I knew this would be a turning point — and for a short time it was. Then my symptoms began to recur, and it was obvious this treatment was not the answer to my prayers.

The medical challenges of MG are still here.

Trusting the process

Taken alone, the physical, financial, and medical challenges would hurt. When they converged, it was almost too much to bear. The dark clouds of depression descended upon me once again. I wish I could say they’ve cleared, but they haven’t. I still ask God why this happened. Was it something I did? Was it something I didn’t do? Or, as my family and friends tell me, was it just something in my body that went wrong?

When I consider my MG journey, I think of Sisyphus. Life with MG is a series of challenges that never cease. Conquer one, and a new one comes along. Roll the stone up a hill, and it rolls right back down.

Unfortunately, I’m not a Greek god. All I can do is trust that, with patience, things will work out. This is where Allen’s words come in: Life isn’t happening in the order in which I’d hoped, so I must trust that it’s working according to the plan of my loving creator. Doing so takes all I have.

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.