With MG, I wonder: Does everything really happen for a reason?

In 2020, a myasthenia gravis (MG) diagnosis completely changed my life.

According to the Myasthenia Gravis Foundation of America, the prevalence of this disease in the U.S. is estimated at 14 to 20 per 100,000. That means there are about 36,000 to 60,000 cases.

So why was I selected for this honor from among the 334 million people in this country? I wish I’d won Powerball instead!

Diagnosis led me to reexamine the notion that everything happens for a reason. I now agree with the “Despicable Me” Minion who said, “The hardest thing about ‘everything happens for a reason’ is waiting for the reason to come along.”

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Life is terminal — it’ll kill you

Those who live with a disease are reminders to others that eventually, everyone is welcomed into the disease community. And eventually, we move from the disease community to the deceased community. Illnesses are megaphones blaring, “Life doesn’t go on forever. Being alive is terminal!”

On an intellectual level, we know that death looms somewhere in our future. When we’re healthy, it’s easy to ignore this reality. We busy ourselves, and death is relegated to the back of our consciousness. A rare disease diagnosis renders this impossible. Many in the rare disease community are forced to confront death and mortality much sooner than expected. It’s unavoidable.

Challenging the notion of a reason

Theologian Kate Bowler has written about the ways in which her diagnosis of stage 4 cancer led her to reexamine her beliefs.

In a TED Talk, Bowler spoke of the loneliness one experiences while living with disease. This loneliness can be compounded when well-intentioned people tell us that “everything happens for a reason” and “God doesn’t give you more than you can handle.”

Bowler says of such remarks, “It’s really oppressive when you just dump that on somebody who, maybe for reasons of illness or, you know, random tragedy or institutional evil, puts them on the losing side of life.”

Making sense out of the senseless

FAP News Today columnist Jaime Christmas’ husband died from hereditary ATTR amyloidosis. Christmas wrote of the experience: “I believe the underpinning fact here is that we don’t want the death of our loved ones to be for nothing. It is important to make meaning out of this otherwise senseless disease.”

The desire to make sense of a disease’s difficult outcome extends to life with the disease. Three years ago, I regularly worked 50 hours a week or more. I drove a high-end German car. I lived a full, busy, successful life. In 24 hours, that life was taken away.

I mourn the loss of my life before MG. My loss is unequal to Christmas’, but even so, it’s the loss of a life. I needed — and still need — to mourn this loss. I was confused when other people told me, “This is happening for a reason.” I remember thinking, “Touché! That’s how the planet works.”

Night, day. Young, old. Up, down. Healthy, sick. Alive, dead. I’ve become a mirror — when others look at me, they see a reminder of mortality.

Death, the uncertain horizon

When I was 8 years old, I had two surgeries to remove a brain tumor. I grew comfortable thinking about death. After life is over, I, like Alfred Lord Tennyson, “hope to see my Pilot face to face/ When I have crost the bar.” I joke that if there’s no heaven, I’m gonna be livid.

Comfort with death confuses and sometimes frightens others. Friedreich’s Ataxia News Today columnist Matt Lafleur wrote that, “A friend and I recently had an honest discussion, broaching topics like depression and the fear of death. I felt relieved afterward. My friend, however, presumed I was in despair, as most people seem to think that sad topics should only be discussed during difficult times.”

I suggest that Lafleur is more in touch than others with that uncertain horizon. I sense he has moved beyond “everything happens for a reason.”

Divine intelligence at work

All of us who live with rare diseases have days when the dark clouds of depression obscure reasons for anything. Days when there is no apparent reason for anything. That’s all right.

In The Apeiron Blog, Mike Sturm writes, “In case you missed it, there is a divine intelligence at work, providing the forward-looking reasons for why things happen. It’s yours. … When bad things happen to you, you have the option to answer the question of why by using them for positive action in the present. It takes creativity and openness, but there are ways — you need only look for them.”

I know I’ll continue to hear well-meaning folks tell me there is a reason for everything. When I hear this, I’ll smile secretly. I’ll know they’re only masking their fear of the uncertain horizon. It will make me love them more.

My MG journey has given me stronger shoulders. Lean on mine just as I lean on those of others.

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.