Living with MG means facing impossible choices, but we can survive them

With more than 5,000 square feet of space, incredible exterior grounds, a swimming pool, a cabana, and splendorous decorations — especially at Christmastime — it was a house that couldn’t help but impress. Every room glowed with warmth and light. But on that particular morning, it felt enormously empty.

I’d been staying there for a couple months because my myasthenia gravis (MG) had spiraled out of control. Things were so bad that my sister insisted I leave Texas and come up north. By then, I could barely eat or drink. Avascular necrosis had brought a level of pain I’d never experienced before — not even after two brain surgeries. I didn’t understand it at the time, but I was in the early stages of a myasthenic crisis.

As I descended the staircase that morning, half of my body went numb. In an instant, I knew this was no longer something I needed to just manage; it was something I needed to survive.

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I called my sister, who was at the gym, and told her I needed to go to the emergency room, then I dialed 911. The ambulance arrived quickly, but it was during the height of the COVID-19 pandemic, and hospitals were overwhelmed. When doctors finally examined me, they told me bluntly that if I’d waited another hour, they would’ve had to intubate me, and even that might not have saved me.

I was taken to a hospital room. I want to note that the staff at Maine Medical Center, from the room attendants to the chief of neurology, was extraordinary. I don’t think you can find more skilled, compassionate, and deeply humane professionals. But even with that level of care, I knew something in me had changed. My old life was gone.

I felt lost, as if caught in a storm I couldn’t control. It was a Sea of Galilee moment, and at first, I didn’t see anyone who could calm the waves. The Gospel of Mark states the following: “And he arose, and rebuked the wind, and said unto the sea, Peace, be still. And the wind ceased, and there was a great calm.” In that moment, I more clearly grasped the fear of the disciples who were lost upon the stormy water in that story. It’s a fear I think everyone with a rare illness can comprehend.

‘Seared with scars’

Nearly 2,000 years earlier, the Jewish historian Flavius Josephus found himself in a different kind of storm. A general during the Jewish revolt against Rome, Josephus was trapped with his men in a cave after the fall of Jotapata in 67 A.D. With Roman forces surrounding them, escape was impossible. They faced a brutal choice, as every option meant loss: They could surrender and face humiliation or death, resist and die, or take their own lives. They chose a suicide pact.

Josephus later described the horror of that moment in “The Jewish War,” writing of the desperation and inevitability of their situation. He stood in a place where every path forward demanded sacrifice.

This is where his story meets life with MG. Chronic illness rarely presents us with clear, clean choices. Instead, it confronts us with trade-offs. We must accept a diagnosis that reshapes our lives or deny it and risk something worse. We begin treatments that may help but also bring their own burdens. As Friedrich Nietzsche observed, “He who has a why to live can bear almost any how.”

Living with MG often means choosing, not between good and bad, but rather bad and less bad. Josephus survived his ordeal, but it came at a cost. Many viewed him as a traitor for aligning himself with Rome. He was criticized and questioned. Yet he lived. And because he lived, he was able to tell the story.

For those of us living with MG, the parallels are uncomfortably familiar. We are often forced into decisions we never wanted to make: take early retirement from careers we love; accept limitations we never imagined; navigate a bizarre healthcare system that forces us to make choices that feel like deciding between two poisons. With regret and sadness, we say no to opportunities and joys that once defined us.

These are not easy choices. And from the outside, they’re often misunderstood. But survival is not weakness, nor is it failure. As Kahlil Gibran wrote, “Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.”

If you are living with MG and feel like you’ve been backed into a corner, you’re not alone. You are not weak. You are doing what human beings have always done in impossible situations: You are finding a way to survive.

Return, for a moment, to that cave. It becomes something more than a place in history — it becomes a symbol of the life we did not choose. Josephus walked out of that cave alive but forever changed. So do we. Sometimes courage isn’t found in heroic victory, but in choosing to live when there are no good options.

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.