Wiping Away Her Tears
April 9, 2018
She couldn’t wipe away her tears.
This is the image that’s haunted me most since I lost a friend to ALS several years ago.
I’d worked with Gina right out of college, then moved on and lost touch other than exchanging delighted hugs if we happened to see each other on a sidewalk or in the mall. She was an incredibly warm and vibrant person – sparkling brown eyes, a hearty laugh – somebody easy to reconnect with in an instant. We were about the same age, and our catch-up conversations reflected the pressing concerns of youth: ten extra pounds, the grocery stores that wouldn’t double our coupons, those darned downtown trains that always tied up traffic during rush hour. . .
But mostly we laughed and reminisced about our fun-filled, adrenalin-fueled, friendship-rich stint at the local newspaper.
Until her little girl was diagnosed with cancer. That’s when our chance encounters turned somber and soul-searching. That’s when our encounters stopped being chance. I would visit her daughter in the hospital and share tearful embraces, squeezed palms, optimistic sentiments, hopeful platitudes. Through it all, Gina was a tower of strength, faith and grace. Those qualities endured even on the most crushing occasion of her life: Morgan’s funeral. I’ll never forget how tightly she clung to me that day.
It was shortly thereafter that Gina was diagnosed with ALS, more commonly known as Lou Gehrig’s disease. I had a glancing familiarity with the condition – bad, grave, debilitating, incurable – but nothing could have prepared me for Gina’s final challenge. She was still young, achingly young, when she became entombed in her own body.
The progressive disease destroys the motor neurons in brain and nerve cells that prod muscles to things like lift a finger or bend a knee. ALS basically blocks the brain from telling the muscles what to do.
Muscle weakness gradually impairs – and eventually impedes – the movement of arms, legs and other body parts. Total paralysis, then death, is the grim endpoint.
Until the end, Gina’s personality remained intact. She could still move her facial muscles, and her eyes still sparkled as we shared old stories. But the laughter would inevitably end in tears. She could feel the rivulets coursing down her cheeks – she could still feel everything – but she couldn’t wipe the tears away. I wiped them away for her and wondered what she did when no one was there to do it.
“How can I help you?” I asked pleadingly, patting a tissue against her cheeks.
“Go home and hold your babies close,” she answered. “Hold them close enough to feel their breath on your cheek. That’s what I miss most: feeling Morgan’s breath on my cheek.”
My last visit took place a few hours before Gina’s death. Her body was still motionless, but her face was more vibrant than I’d seen it in years. “I can feel it!” she told me, her voice now barely a whisper. “I can feel Morgan’s breath! It’s getting closer.”
It took me a few years to channel this experience into my fiction. It was too raw. But my last visit with Gina inspired me to push ahead, in her honor. My latest novel, “All the Wrong Chords,” includes a character with ALS, and I fervently hope I did my friend justice. It felt right, because the character in my novel, like Gina, is so much more than her disease. She’s a physician, a loving mom, a caring and sensitive person who just happens to spot a great deal on the bass guitar her son’s best friend has been saving up for when his father loses his job. It’s her spirit, not her disease, that defines her. Just like my friend.
With her keen sense of fun, I know Gina would have loved the ALS ice bucket challenge that made the rounds a few years ago. I picture her hoisting a bucket above her head, squealing as cold water rains down. Water she can wipe away as her giggles subside.
That’s how I picture Gina.