Life taught me that nothing is guaranteed, so I live in the present

The days one lives with a rare disease are part of life's fabric

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by Mark Harrington |

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“Watch, therefore, for ye know neither the day nor the hour wherein the son of man cometh.” — Matthew 25:13

These words have been at the forefront of my thoughts in the past few weeks, following the sudden deaths of two family members. The quote reminds us that everyone has an appointment with death. While it may not be scheduled in our phones, we won’t be late for this appointment. This makes each moment precious.

Life with myasthenia gravis (MG) heightens both the preciousness and the tenuousness of each day.

In my salad days, I believed a natural progression existed in our lives. We are young, grow up, raise families, and then retire. Finally, with the fullness of time, we exit life’s stage. But life intervened and showed me the naïveté of this belief.

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A week before my high school graduation, a classmate was killed in a car accident. Twelve years ago, two children of my cousins were killed, both at the age of 21. In the middle of a wonderful summer afternoon, my sister-in-law’s father died while sitting at the beach. Death doesn’t have a fixed schedule.

When I was diagnosed with MG, I didn’t think my life would change very much. I’d take a few pills, get a little extra sleep, and life would go on, I thought. Then two unrelated forces converged to shatter that assumption: COVID-19 shut down the world, and we couldn’t get my MG under control.

Life with MG

During the pandemic, my weakened immune system made social distancing essential. This resulted in a degree of isolation I’d never known before.

As my neurologist tried to bring my MG under control, I experienced days when my body was so weak I couldn’t roll over in bed to turn off the light. While sleep increased my isolation, it also became my safe space.

Through it all, I was aware of time’s passage. Every day spent in quarantine or in bed decreased my total allotted days. I was being robbed.

Many people who live with rare diseases know that our lives might be shortened. I’ve been aware of this since the start of my MG journey. I grew angry when I added up the days MG might take from me, along with those I’d lost to the pandemic. Once again, naïveté led me to the wrong conclusion: Leading a decent life and striving to be a good person don’t guarantee a peaceful death at an advanced age.

As I mourned the recent losses and reflected on events, I had an epiphany and remembered the words of a common refrain: “Life is what happens to us while we are making other plans.” I’ve been waiting on something that isn’t coming. Life with MG is my life and will be until I die.

Whether long or short, difficult or easy, the days one lives with a rare disease are part of life’s fabric. Therefore, the days I spend sleeping aren’t wasted. They demonstrate that sometimes everyone needs help from others.

Those who are unable to participate in life in ways that are common to most of society have important contributions to make, too. While MG has confined me to the four walls of my home and I’m no longer as active and visible as I once was, I’m still here!

I suspect that everyone who lives with rare illnesses has a heightened sense of time’s passage. Medications, MRIs, hospitalizations, and everything else remind us that life is fragile. We see clearly that there are no guarantees about tomorrow. Life is lived in the present.

There was a time when all of this bothered me. Now I see that rather than simply delivering me a blow, MG has also brought me benefits. I recognize that my days may be fewer than I once expected, yet this awareness reminds me of the need to fill each day with as much living as possible.

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.


Allan Hock avatar

Allan Hock

Mark Harrmington's article was quite inspirational, thank you for sharing. In a way it made me feel fortunate, I was diagnosed with mg 25 years ago and currently 87, still able to bowl two times a week and enjoy my family, I forwarded the article to a close friend who is struggling with life after having a brain tumor removed, I hope that it will give him inspiration and a positive outlook in the future.


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