11. A Hero for the Books

11. A Hero for the Books

From Chicken Soup for the Soul: Happily Ever After

A Hero for the Books

His grin and twinkling eyes were the first thing I noticed.

I was a regular at the public library and had seen librarians come and go like Heinz goes through tomatoes, but this guy was different. He talked to patrons like they were special and the most important people ever to grace the earth. It didn’t take many visits to feel like we were old friends, and trips to the library became social events.

Sharing New York humor made for some belly grabbing laughs; Mark’s deadpan quips made tears roll down my face. I never tired of leaning against the front desk to hear his latest spin on some inane happening, which only he could make into a comedy routine. My book returns were notoriously overdue, but it was so much fun to visit with Mark that promptness became my habit.

Over time, though, Mark seemed tired. He would rub his eyes while in the middle of a story, and his quips weren’t as frequent. Yet, he never lost his smile and always made a point of asking about my family. We still discussed books and motorcycles and religion, but I could tell something was wrong in his life. I couldn’t just blurt out, “What’s wrong?” based solely on a gut feeling. Or, could I?

It was during one of our chitchats that Mark let slip that he had taken his wife to the doctor. Not wanting to lose the opportunity, I pursued the subject. What did he mean by sick?

“ALS, Lou Gehrig’s disease,” he replied. His answer shoved me into the proverbial brick wall. As a nurse, I had seen the destruction wrought by the disease and knew there was no cure. For once in my life, I was speechless.

Heartbroken for his situation, I gently pressed him for more details. He was willing to talk, and talk he did. His words gushed like water from a crack in a dam, flowing until there was nothing left. He had kept his secret well hidden behind the jokes, the stories, the exchange of wit, but he couldn’t mask the pain any longer. The lump in my throat prevented any reply. The tears in my eyes reflected his.

The debilitating disease was diagnosed shortly after their second child was born. Mark and his wife were sucked into the quicksand of illness in the prime of their lives.

They were fast-forwarded through the marriage experiences, living out their vows “in sickness and in health.” While other young mothers taught their babies to speak, their little boy translated his mother’s increasingly slurred speech. She was now at the point where one blink of the eye meant “yes,” two blinks, “no.”

After working all day, Mark rushed home to oversee homework, prepare dinner and drive the children to their activities. He survived his first shopping trip with his preteen daughter, and, when their son was old enough to play ball, he purchased a van so his wife’s wheelchair could be rolled into it. As long as she had breath in her body, she was determined to see every game. She loved being a mother.

When Mark exhausted his monologue, he poignantly added, “Did you know we both love the beach? One of our favorite things to do together was to sit on the sand at sunset. We’ll never be able to do that again.” Now, their dates were trips to the hospital during bouts of pneumonia or wild-goose chases to doctors, hoping for a new solution.

On subsequent visits, I learned how draining the responsibilities of caring for a spouse with ALS are. After carrying her into the bathroom and preparing her for bed, Mark then wakes up at least once every hour to turn his wife so she doesn’t choke. The muscle activity in her body has diminished, and she has to be physically lifted, rolled over, suctioned and repositioned. He gently rubs her legs to ease the pain, and he whispers in her ear as he wedges pillows around her. A little smile peeks up at him in gratitude, and they drift off for a few minutes sleep, until the routine is repeated. He is up at dawn to send the children off to school, greet the aide and leave for work at the library.

It’s been a gift to become a part of his life, to witness the incredible bond of a man’s love for a woman. His commitment to her shines like a beacon in a dark world where marriage is devalued. He is a testimony to what men and women are called to do in their lives — to love unconditionally, selflessly and without end.

A lesson that’s long overdue.


~Irene Budzynski
Chicken Soup for the Caregiver’s Soul

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