Every year, I say, “I’m not gonna do it.”
Register for another walk, another march to “end” a disease. Another two-mile jaunt with balloons, strollers, drawn-out faces or heavy breaths. Another fundraiser where one can secure a FAST PASS, meant for the elders perhaps, to the front of the registration line or be handed a bag of goodies for sponsors or items not needed.
My mother’s condition was never diagnosed as Alzheimer’s, based on scientific testing, hers was of the slow-slide dementia variety. But there is no “walk for dementia awareness”, so naturally most efforts fall under the Alzheimer’s category, because its an identifiable name.
“I’m not gonna walk, to end Alzheimer’s,” I say, as I sit with Mom these days, and wonder how she is still here, when her present lasts only seconds and her past does not exist. Then she glances at me, and smiles. Mom’s is a child-like smile, unlike any witnessed in younger, more somber photos of her, as if not wanting to participate in the ritual.
Mom’s smile causes me to gasp, especially when she says goodbye to my son, off to college. He won’t see her until Christmas. She is seated in the sunshine on a worn wooden bench in full view of the burnt orange mums recently planted, and the fountain which will be turned off soon, its gurgling gone away. My son leans his lithe body into her and gives one last squeeze. Mom receives the squeeze with grace.
She reaches up, beaming. “Goodbye, sweetie,” she says, brushing his cheeks with her still soft hands, as if years of Jergen’s lotion really did the job. I am near tears, remembering how she used to cradle a five-pounder in her arms. Nana’s little snuggler.
“I’m not gonna walk this year,” I think, noting her stature has shrunk now, following two seizures, which impacted her posture. She has a permanent “lean in” which would make Cheryl Sandberg jealous. As we stand and I try to straighten her, l lift her arms past the shoulders and tell her we are practicing sun salutations. Mom would kill me if she knew this was yoga.
She wobbles to keep her balance while I support her arms overhead. Then, she really leans in – to me – and nestles into the crook between my head and heart. She has become the snuggler now. Clutching, grasping, patting my back.
“I’m not gonna walk this year,” I tell myself, then encounter the brave caregivers who stroll corridors with or chase down Mom and respond to her every need. Or I am met with the real, live bodies of other residents in mother’s care home. With Jim and Ella, I am discussing the pope. “Well, I haven’t seen him in a while,” Jim says. And Ella says, “I really haven’t been watching television,” despite my last visit when Ella was in the room while we were watching news about the pope’s upcoming visit.
“I’m not gonna walk,” I say. Then Matty smiles at me while eating a late lunch or early dinner, as I spy her through the window of her dining space. She rarely is without grasping the arms of a male, whatever male is in her reach, to lead, coax, sit with or share. I wonder what her marriage must have been like.
Then I sit at lunch with Madge, and she says, “Everybody get out of my house.” And I’m ready to high tail it out of there, given her mood shifts. But I don’t.
Or I place a red cowboy hat on Sue Ann’s head, for “cowboy day,” knowing she used to listen to Johnny Cash and Dolly Parton. She giggles and hums.
“I’m not gonna walk, “I say. Then, I’ll lead Mom around her hallways, occasionally attempting to move her outside because it’s warm. She is reluctant because if the sun is not out, she doesn’t consider the temperature warm.
To exit, we have to dance around Gerry, the caregiver, and another resident, Karen. Karen’s young life at age 60 was once full. It still is, only now her days are spent walking, walking, walking. She never sits long, not even to eat. She is thin, worrisome on her best day, agitated on her worst.
“I’m not gonna walk,” I think. Then Karen’s eyes light up when she spots me. I hold her in a long embrace. Karen has a grip on me and I am OK with that, despite Mom’s impatience. “C’mon, c’mon,” she chides, moving me out of her way.
I wish this walk wouldn’t use such an impractical phrase as, “Walk to End Alzheimer’s.” The writer in me believes the slogan feels more like a gimmick than goal. But what I really want is for walks to be replaced by hugs. Hugs to raise money. Hugs to end our fears. Hugs to “lean in” to the nakedness and vulnerability we have all felt at times. Hugs to remember the humans inside each of these creatures that look, sound and yes, even act like the rest of us.
Regardless, this year, I’ll walk.
But next year, I’m gonna hug my way through the day, knowing that fierce hugs ignite a brain in a way medicine and marches cannot.
*All names, with the exception of Mom’s, have been changed.