My MG Diagnosis Was a Shock, but I Learned to Trust the Journey

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by Mark Harrington |

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In the book “Man’s Search for Meaning,” Viktor Frankl writes, “If there is meaning in life at all, then there must be a meaning in suffering. Suffering is an ineradicable part of life, even as fate and death. Without suffering and death human life cannot be complete.”

A myasthenia gravis diagnosis brings myriad changes to one’s life. Simple things such as grocery shopping, cleaning up around the house, and hanging out with friends and family now present challenges. Important aspects of life, like a career, vanish or change, sometimes beyond recognition. Depression can quickly fill the void left by these changes.

The challenges of myasthenia gravis (MG) are not equal to the inhumanity of the Holocaust, which Frankl so movingly described in his book. Yet they do bring dilemmas. Some are existential: Why has this happened to me? What did I do, or not do, that caused this disease? Will my career come to an abrupt and unexpected end? Is this the beginning of a slow death?

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Other dilemmas carry less import: Will I ever be able to live without constant exhaustion? Can I still take that trip to Ireland? Will I ever have enough energy to walk the dog? Any chance I can have a month without trips to the doctor?

With MG, one must navigate the world of neuromuscular medicine, unfamiliar treatments, and changes to one’s body (and I’m not talking about bulking up or developing a six-pack). These challenges, both ordinary and existential, create a sense of loneliness. How do I move forward? Can I move forward?

In the year prior to diagnosis, I lost 47 pounds. I was proud and in shape. But medication side effects quickly added back those pounds, and then some.

At the time, we were in the middle of the COVID-19 pandemic, and the isolation brought depression that was magnified by the corticosteroid prednisone. I was desperately missing my daily life at my job as a history teacher. The average teacher answers more than a thousand questions a day, but now, my brain wasn’t called upon very often.

I missed the questions that once annoyed me: “Can I go to the restroom?” “Why did I get a zero?” “How old are you?” “Why do you have so many pairs of glasses?”

Now I was the one with questions, and I wanted answers. My life had gone off the rails. What happened? What could I do? Could anything be done?

Then I remembered my Psychology 101 class in college. I was 20-something and certain of many things. The intervening years have stripped away much of that certainty — but not before our professor assigned “Man’s Search for Meaning.”

While I had initially approached the book as if it were another boring requirement, I quickly realized my error. Frankl’s account of his life in the concentration camps of World War II changed me, particularly when I reached this passage:

“Everyone has his own specific vocation or mission in life; everyone must carry out a concrete assignment that demands fulfillment. Therein he cannot be replaced, nor can his life be repeated. Thus, everyone’s task is unique, as is his specific opportunity to implement it.”

Our lives, despite their randomness, matter! I matter!

Experience has shown me the validity of Frankl’s words. Every journey is unique and filled with specific challenges. MG and all other rare diseases are not phenomena from another universe. They’re not the journey. They are adventures along the way. They have no inherent goodness or badness.

Before we set out on a foreign journey, we do our research. We Google our destination. We ask advice from family and friends. We might watch a Rick Steves video or read a travel guide. We find solid, trusted information.

My MG journey has taught me the importance of building a dependable network that includes a compassionate neurologist and fellow MG patients I’ve connected with through other resources. Opening up to family, friends, and co-workers can help to ease the anxiety that others may feel as they also cope with your MG.

Take a deep breath — or two — and pull out your journey’s itinerary. You may be in for a bumpy ride. But recognize that MG is now part of your life’s adventure. It’s not going anywhere, but you are.

In the book “Eleven Minutes,” Paulo Coelho writes, “I can choose either to be a victim of the world or an adventurer in search of treasure. It’s all a question of how I view my life.” Don’t accept victimhood. Search for your treasure. Trust!

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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2021 Myasthenia Gravis Survey Results

BioNews Survey Infographic

Myasthenia Gravis News conducted a survey from Feb. 11-March 28 to gain greater insight into the characteristics of the MG community and disease management. Results of the survey have now been published. Click on the image to view the infographic, and click here to read the story.