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Living in the Present: Embracing Life’s Uncertainties

“Therefore, keep watch, because you do not know the day or the hour.” — Matthew 25:13

These profound words have been occupying my mind recently, especially after the unexpected passing of two family members. They serve as a poignant reminder that death is an inevitable part of life, arriving without prior notice. This unpredictability underscores the value of each moment we are granted.

This uncertainty surrounding the timing of our mortality underscores the fragility and significance of each passing day.

In my younger years, I held a simplistic belief in the linear progression of life—from youth to adulthood, raising a family, and eventually retiring before exiting the stage of life. However, personal experiences shattered this illusion of a predetermined path.

The abrupt loss of a classmate in a car accident just before my high school graduation, the tragic deaths of my cousins’ two children at the age of 21, and the sudden passing of my sister-in-law’s father during a seemingly idyllic day at the beach all served as stark reminders that death does not adhere to any fixed schedule.

At a certain point in my life, I assumed that minor adjustments and a bit of rest would suffice to navigate through challenges. However, the convergence of unforeseen circumstances, including a global shutdown, and the unmanageable nature of my MG condition shattered this misconception.

Coping with MG

The onset of the pandemic necessitated strict social distancing measures due to my compromised immune system, leading to an unprecedented level of isolation.

While grappling with attempts to control my MG symptoms under the guidance of my neurologist, there were days when my physical weakness rendered even the simple act of turning off a light in bed a monumental task. Despite the increased isolation brought on by my circumstances, sleep became both a refuge and a necessity.

Throughout this period, the relentless passage of time became acutely apparent. Every day spent in isolation or confined to bed felt like a theft of precious time.

Individuals living with rare diseases often confront the reality of potentially shortened lifespans. This awareness has been a constant companion since the beginning of my MG journey. As I tallied the days affected by MG and those lost to the pandemic, I grappled with the sobering realization that leading a virtuous life does not guarantee a peaceful departure in old age.

In the midst of mourning recent losses and reflecting on life’s uncertainties, a profound realization struck me, echoing the sentiment that “Life is what happens to us while we are making other plans.” The pursuit of an elusive ideal was replaced by the acceptance that life with MG is my reality, shaping my existence until its inevitable end.

Whether marked by challenges or ease, longevity or brevity, the days lived with a rare disease are an integral part of life’s tapestry. Thus, even the seemingly unproductive days spent in slumber serve a purpose, highlighting the universal need for support and interdependence.

Individuals facing limitations in participating in conventional societal activities possess unique perspectives and contributions. Despite being confined within the confines of my home and experiencing a decrease in visibility and activity levels, my presence remains significant.

It is likely that those navigating rare illnesses possess a heightened sensitivity to the passage of time. Medical appointments, diagnostic tests, hospital stays—all serve as stark reminders of life’s fragility, emphasizing the absence of guarantees for tomorrow. The essence of life lies in embracing the present moment.

While these realities once perturbed me, I have come to recognize that amidst the challenges, MG has also bestowed valuable lessons. The acknowledgment of life’s impermanence serves as a poignant reminder to infuse each day with purpose and vitality.

Note: This is an informative platform dedicated to news and insights on myasthenia gravis. It does not offer medical advice, diagnosis, or treatment. The content provided is not a substitute for professional medical guidance. For any medical concerns, consult a qualified healthcare provider. The opinions expressed in this piece do not necessarily reflect those of Myasthenia Gravis News or its parent company, BioNews, and are intended to stimulate dialogue on matters related to myasthenia gravis.