The silver linings of solitude, the gold nuggets of gratitude

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by BioNews Staff |

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The myasthenia gravis community spotlight banner features photos of people living with MG.
A man with a goatee and sunglasses smiles for a photo with his dog Carmel.

Michael and Carmel. (Photos courtesy of Michael Adam Weinberg)

This is Michael Adam Weinberg’s story:

I might’ve found myself solo, still meandering lost on this winding, never-beaten path of life, without my myasthenia gravis diagnosis and the consequential medical challenges I’ve faced over the past 17 years. Possibly, but not probably.

I skew slightly toward an introverted lifestyle. I enjoy my comfort and my kitchen. However, from my preteen years to my 30s, I still enjoyed social events and outings, camaraderie, conscience, and coffee.

Initially, my diagnosis was a mystery and malignancy. I was and remain an outlier by sex, age, and demographic. I was a strong, robust, healthy 30-year-old. I enjoyed hikes, heavy and light lifting, grappling, running, and rigorous activity. I was in exceptional peak physical shape and skewed the demographic.

Initially, the diagnosis had a harsh impact due to the invasive surgery, a thymectomy, required to remove my thymus gland. Six weeks of X-ray radiation followed, then years of steroids and other therapies. The ramifications of these choices still aren’t clear.

And the slow woven tapestry of life clickety-clacks on the weaver’s loom, hour after hour, day after day, as the months pile into years. Soon the friends and family with babies and toddlers have preteens and adolescents. People move, people change, people don’t have time. Or care. Or loyalty.

The thread is bare, frazzled or frizzled, or both.

This warped tapestry, a blessing and curse, demands the need for a nurse, for survival’s purse; it inhibits my freedom to read or write verse, the search constant for purpose.

My body oft exhausted in perpetual battle dance, assisted by the needle’s lance, because of weakened stance. Even still, after all these years at war, this is hard to understand: My colorful, active, full life dulled by “lottery chance,” I’d prefer these shackles lanced.

Instead, the abandonment by family and friends, by society and “the sanctified,” offers me solitude and solace. The friends and family who don’t call or write or visit offer me days and days alone, perpetual — time both torturous and exquisite.

A man wearing a blue flannel shirt smiles in front of a wooden sign that reads "All I want is more beautiful" in blue, with an image of a man hiking through flowers.

Michael smiles at Pop Up Nola in 2017.

The solace provides the ink, shiny, to render linings where agony abounds, to reveal nuggets where all seems lost; the sheen of gold is found. Limited mobility reminds me of the magic of biology, chemistry, and physics. Such milestones mark precious gnomes guarding my meander.

The silver-lined solace infuses moments of conversation with gold nuggets of gratitude. My attitude of thanks for the moment, for curiosity, for divinity, for awareness of my mortality and functionality, constant; for the hand of divinity, pumping the heart within me; and for my kitchen — my hearth of comfort, color, and creativity.

The camaraderie of a rare cup of coffee among elders of acquaintance, some with patience, some patients, our bodies in degradation, while, ironically, I ponder my actualization. And here I sit now, iced coffee, bobblehead, measuring distance to home even with wheels, CPAP need imminent, these words I hoped to share days ago, but this is how my life goes: an errand accomplished, coffee enjoyed, returning home to my pup. Silver linings, gold.

In recognition of Myasthenia Gravis Awareness Month in May, the MG Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by MG, written in their own words. Follow us on Facebook and Instagram for more stories like this, using the hashtag #MGSpotlight, or read the full series