Lessons from my late father on coping with loss in life with MG

On Memorial Day, my sister posted a photograph on Facebook that made me stop and think. There was my father, a World War II Navy veteran, standing in front of our town’s monument to all those who served in the military. He stood straight, with the assistance of a cane, the way men of his generation stood when something mattered. I stared at that image for a long time, thinking about how his youth was so different from mine. I reflected on what he gave to his country.

Dad’s life was one of service. After the war, he went to college on the GI Bill and spent almost 40 years teaching high school English. His professional life was in service to young women and men, shaping their minds and stimulating their intellects. It was a noble calling, and he was justly proud of his work.

Then I thought about what was taken from him in the last years of his life, not on any battlefield, but in the quieter war that is chronic illness. At age 70, just after retiring, he was diagnosed with myasthenia gravis (MG). For the next 15 years, Dad lived with the daily struggles that accompany MG, yet he rarely complained.

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I was reminded of this when I received my MG diagnosis. I’ve noticed that the sarcasm, stubbornness, and dry humor that have always been part of my makeup, and were passed down to me from my father, are character traits that help me through MG’s dark periods. I am still working on inheriting his grace.

The monument before which Dad stood honored the losses that accompany wars. Those of us who live with chronic disease understand something about loss that does not often get named out loud or carved into a stone.

Loss need not defeat us

MG took my career. For 30 years, I was a history teacher in inner-city schools, where 83% of my students lived below the poverty line. I never once thought of it as work. I thought of it as a calling. I believed, and still believe, that I was in those classrooms, among those young men and women, because it was where I was supposed to be. Then, in 2020, MG ripped that life from me. The classroom door closed. It was abrupt, final, and pierced me to the core.

That loss will never make the news. Only a few intimate family members and friends will ever see it. There is no monument for it. But it is real, and it deserves to be spoken.

MG takes other things, too. It takes spontaneity, the freedom to say yes when your friend calls and wants to have dinner. It takes the version of yourself that other people relied on. It takes plans, mornings, and sometimes entire weeks. Those of us who live with this disease know the particular grief of canceling on the people we love most, not once, but again and again, watching the worry move across their faces and being unable to fix it.

The poet Mary Oliver asked what I believe is the essential question of a human life: “Tell me, what is it you plan to do with your one wild and precious life?” MG does not ask for your permission before rewriting the answer. It simply rewrites it.

Dad’s difficult childhood gave him an early acquaintance with loss. World War II, his career in education, and his eventual struggles with MG deepened his understanding of how loss affects one’s life. These experiences tenderized him and made him more compassionate. Through it all, he never surrendered an inch of his dignity. His sarcasm and humor were with him right to his final breath.

Frozen in time, Dad stands before that monument, a very different man from the 21-year-old whose name is engraved there. In that photograph, he is both the young sailor who served and the older man who endured. It seems to me that once again, he’s the teacher instructing us that loss need not lead to despair.

Alfred Tennyson concludes the poem “Ulysses” with these lines:

“Tho’ much is taken, much abides; and tho’
We are not now that strength which in old days
Moved earth and heaven, that which we are, we are;
One equal temper of heroic hearts,
Made weak by time and fate, but strong in will
To strive, to seek, to find, and not to yield.”

This passage reminds those of us who live with chronic illnesses that loss is part of the journey. Illness may make us weak, but it need not defeat us. We still can choose, like Ulysses, to use what strength remains in pursuit of distant shores.

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.