AN OFFERING | Susan Hall
The technician works methodically from the salmon-colored plastic tub of warm water she’d drawn earlier. As the thin hospital-grade washcloth hits the water, I catch a faint whiff of the bleach it had been washed with. Wringing it out carefully, she places a corner of the cloth over her index finger, pivots her wheeled stool over to the gurney where my son is lying, parts tufts of his brown hair aside, moves the washclothed finger to the spot she’s looking for, and begins to rub. She’s methodical, she’s precise, she’s fast.
She’s unfolded the washcloth from inside a towel roll my son’s neck rested on. I’d watched, amazed, as it emerged from the unrolled towel where it had waited, nested expertly inside like a small Russian doll. As she seeks out each of the red grease-penciled dots she’d marked an hour before, she seems like she’s in no hurry at all. My son does not flinch.
Earlier she’d pulled twenty-seven electrodes from his head. They’d rested on tiny mounds of conduit gel. A nearly life-long epilepsy patient, my son has endured dozens of these tedious and uncomfortable tests—EEGs, the scalp-based measure of brain wave activity. Today, it was part of a PET scan, yet another test to determine whether he would be a candidate for the penultimate treatment for the drug-resistant epilepsy he and 30 percent of his fellow epileptics suffer with: surgery. Diagnosed as a baby with a rare form of epilepsy that’s fired mostly uncontrolled through his brain for the better part of two decades, at 21, my son seems stoic through these procedures, a seasoned veteran. His intellectual disability means he doesn’t have words ready to articulate pain or discomfort. I know, though, that his quiet is a kind of forbearance, not meekness.
As she moves nimbly around his bed, brushing occasionally against the blue curtain rolling a semicircle of privacy around our niche, I’m struck by the apparent age similarity between my son and her. The red Chuck Taylors, the hole of her off-duty nose ring, her chat with me about a book she’s reading—it’s all placed her within a couple of years of my boy, whose six-foot frame she hovers over now.
She dips, wrings, encases her finger again, sorts hair. Applies a gentle pressure to my son’s head. Scrubs. Still, he does not draw away.
The lab manager who had run the scan earlier flits by on his way to another bed in the busy room. Something about this scene arrests him, and he joins me opposite my son and this young woman, our backs leaning against a cool stainless steel counter.
“You know, we’re going for fish sandwiches and fries after this,” he says to the technician, referencing an earlier conversation he’d had with my son. While placing his IV, he had drawn out our plans to stop at a fast-food restaurant on our way back across the state. “Want to join us?”
“Oooh, that sounds good,” she says. Dip, wring, part, scrub. “I love fish sandwiches.” A smile spreads across my son’s face. “Me too,” he says.
Earlier that summer, my husband and I had attended the destination wedding of his boyhood best friend. A later-in-life second wedding, it was a small gathering in Hawaii, mostly family, and soon after we arrived we found ourselves at a casual pizza-place meet-and-greet for the bride’s and groom’s families. We’d been tucked in across from the groom’s youngest sister, now in her forties, and her new husband.
Exchanging banter about where their lives had taken them, my husband, loosened by the complimentary mai-tai and eager to fill a conversational lull that had lingered just a moment longer than he felt was comfortable, asks: “So, no kids yet?”
I’m first to see the annoyance flash across her expression. It’s fleeting. My husband and this woman had grown up together—he’d had countless sleepovers at this family’s house growing up and had, certainly, encountered moments far more awkward than this with her. No harm has been done. Still, I rush in to save us, let her know we get it. “Mike,” I chide my husband playfully, hand on his arm, “there are lots of ways to give and receive love in this world.”
The next morning we’re snorkeling off a volcanic beach. It’s hushed, it’s otherworldly, and I’m contemplative as I float in the warm ocean, watching fish from a cartoon dart in and around coral reefs, watching sea turtles scuttle around, sending gentle puffs of black sand in their wake.
I drift back to last night’s dinner, and my words, which I hadn’t even considered before I blurted them out.
I think of the fantasy I’d had of parenthood back when my son was a baby, back in the early days when I’d rock him in the gingham-padded oak chair, whisper him back to sleep after a midnight feeding, chanting into his ear with each forward and backward movement all the qualities I hoped he would have. So smart, so handsome, so kind, I’d incant over his fuzzy newborn head. My baby, an empty vessel into which I’d pour: me.
I’d understood parental love to be about transmitting oneself to a future generation, passing on family values, religious beliefs, even hobbies: we’d read lots of books; he’d precociously memorize a poem as soon as he could, I’d planned.
But when the tiny, relentless seizures started washing over my son, bringing with them a terrifying diagnosis of stalled cognitive development and almost-sure permanent intellectual disability, all these fantasies shattered into a million little pieces. I could almost see the perfect family photo—you know the one: staged on a beach, a descending lineup of white polo shirts and blue jeans, setting sun casting a glow over it all—drift away, torn up, in the wind.
I’d thought at the time that my heart was broken. Looking back, I was right about that, in a way. My heart had been broken. But it had been a kind of breaking-open, a cracking open that left space for something new to emerge.
No, this kind of love, I’d learned, was more about an emptying—becoming raw, new. My heart had broken, but in its place emerged a tender heart, one able to bear pain and suffering, both my own and my son’s. In its place emerged an alertness to the beauty of a world that mostly—more often than not—responds compassionately when faced with illness and disability.
The feeling I know now is both more complex and difficult to pin down: it’s an empty space into which a fullness flows. A prickling to attention in the face of a moment of kindness. A visceral flooding. It’s molecular, it’s universal. A shared glance across a crowded room: I’m with you. A flash of recognition at a camp-pickup, rolling into delight: There you are. It’s a radical act, a daring great enough to overturn that big fantasy: how we think things are supposed to be.
Parental love has been at once everything and nothing I thought it would be. But it’s not, I decide as I drift along, the exclusive purview of those who’ve chosen, or been able to, give birth or tend legally to a child. No, it lies in everyday moments, ones available to all, coming to life for any of us and all of us when two lives intersect for a moment or for a lifetime. An offering of sorts is made: a life is made a bit more comfortable, a person is accepted just as they are. If it has to be a transaction, it’s complete only when there’s someone who needs our help and then graciously accepts it. A warming of water for a washcloth. A trust that this hand, the one about to touch your head, will be a gentle one.
Back in the PET lab, now, the technician is finishing up. When she’s done scrubbing, my son’s hair is poking up wildly. She reaches around on her tray, produces a thin black comb, like the ones they used to hand out on school picture day. She leans over my son one last time, runs the comb through the crown of his large, brown head, smoothing across the thick hair. “There you go,” she says, finally.
The lab manager and I peel ourselves from the wall, come back to reality. “Good job,” I say to my son. “Thank you,” I say to the young woman, and we get up to leave, the fresh neat comb-tracks still evident, shimmering, in my son’s warm, wet hair.
Susan Hall is a high school English teacher, who lives on the eroding bluffs of Lake Michigan, where she engages daily with the rhythm and beauty of words. Her essays about her son and his epilepsy have appeared in Newsweek, The New York Times, Insider and elsewhere.