When chronic illness thrusts us into a fifth season of life

Carole King gave them a tune. My closet bears witness to their different requirements. Winter, spring, summer, and fall divide our years and give rhythm to our lives.

But I’d like to add a fifth season, one that those of us living with chronic illness know too well. It’s a season of quiet grief for the life we didn’t get to finish, or the life we never had the opportunity to begin. I became acquainted with this season in 2020, when I was diagnosed with myasthenia gravis (MG). Unfamiliar with Season Five, I assumed it was just another bump in the road.

Slowly, as I gave up my career, social life, travel, and even simple routines, I began to understand that I was facing a new reality. This idea rocked my world. John Greenleaf Whittier expressed this state of mind in his poem “Maud Muller”: “For of all sad words of tongue or pen, / The saddest are these: ‘It might have been!'”

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No ceremony marks the shift to the fifth season. Leaves don’t change colors. Nobody attends a funeral for the version of yourself who used to run marathons or lead classrooms. Condolences won’t arrive in text messages, phone calls, or Hallmark cards. We mourn losses that others don’t see and society doesn’t validate. Psychiatrists call this kind of sorrow disenfranchised grief. The social norms we use to process other forms of grief aren’t applied here.

My fifth season arrived gradually. Some days it was hardly visible. Other days it was all I could see. One of the cruelest aspects of MG is its unpredictability. A good morning can dissolve into a difficult afternoon. MG fatigue isn’t the same as being tired; it’s a lack of energy that interferes with daily life. This fatigue becomes the silent architect of our days.

All this was the canvas of my Season Five.

‘To everything there is a season’

There’s a strange beauty to this season. Like winter, it strips life down to what is essential. I’ve become more attuned to simple kindnesses, and I appreciate when a friend calls or when my Frenchie won’t stop demanding my attention. When we’re no longer sprinting through life, we notice things.

As Marcel Proust wrote, “The only true voyage of discovery … would be not to visit strange lands but to possess other eyes.” My illness has given me new eyes, even as it has taken much else.

Grief, I’ve found, can coexist with gratitude. I still grieve the loss of intangibles such as my career, my independence, my vision of the future. I miss the version of me that didn’t have to plan days around neurologist visits or medication schedules.

But the changes MG has brought aren’t all negative. I’ve formed deeper connections with others. I don’t mark only what I’ve lost; I note where I’ve found resilience. As Psalms 30:5 reads, “… weeping may endure for a night, but joy cometh in the morning” (King James Version). Though it may seem so distant we doubt its existence, morning will come. Season Five will pass.

Joan Didion once wrote, “Grief turns out to be a place none of us know until we reach it.” I’d replace grief with chronic illness. Few people understand this place until they’re forced to live here. Illness may change us, but nobody is same person they were yesterday.

Heraclitus said it best: “No man ever steps in the same river twice, for it’s not the same river and he’s not the same man.” A fulfilling life results from embracing today. Luke 9:60 says, “Let the dead bury their dead” (King James Version).

Focus on living. Pay attention to who you are, not who you were.

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.