When Hamilton Cain’s son—who suffers from Spinal Muscular Atrophy—needed a therapeutic bed, a backflipping former dancer from the movie Hair saved the day.
As a nor’easter bore down on Brooklyn that January morning, he biked over from Park Slope to our apartment in Boerum Hill, materializing from the storm’s pale wash like a figure from a pointillist canvas, dots of color resolving into three dimensions, buck-toothed and bow-legged. I waited next to my son’s crib while Dirk stripped off his anorak and Timberlands and left the gear next to the front door, pooling meltwater.
Fifteen months old, Owen suffered from a genetic neuromuscular disease called Spinal Muscular Atrophy, or SMA. His symptoms presented only a few weeks after birth, when he couldn’t hold his head up, couldn’t flail his arms, indications of extreme muscle weakness. The act of breathing—diaphragm in, out, in, out—was hard labor.
He lay curled on his side in the crib, immobile, his hazel eyes scanning the room. A thin plastic tube coiled into his abdomen, providing nutrition; a nasal canula connected his airways with a ventilator that delivered a steady pressure—whoosh, whoosh—to open his lungs.
From that first session as Owen’s new physical therapist, Dirk decided to shake things up. He was, he told us, an unorthodox guy. He’d come to this second career after two decades as a dancer with the choreographer Twyla Tharp. “The joints got rusty,” he said. His wife, Marcy, had also danced with Tharp and now taught repertory part-time. They’d made enough money from special performances and appearances in the film versions of Hair and Amadeus to put a down payment on a dilapidated brownstone, which they’d renovated and where they’d raised two young daughters.
He noticed that if he held Owen’s elbow a couple of inches off the crib’s mattress, Owen could flex his hand and forearm, lift his wrist in a kind of sign language: look, Dad, what I’m trying to tell you. The therapist cracked a toothy grin. “All you need to do is neutralize gravity and he’ll be able to move.”
Dirk found a frayed cotton gown, a souvenir from Owen’s recent hospitalization, tore it into strips, and fastened the largest piece to the feeding pump’s steel arm, using the gown’s ribbon to dangle a sleeve down to Owen’s level. Once he’d inserted the child’s arm into the improvised sling, the effects of gravity were negated. Owen could jab his hand up and down, swing his arm vigorously from side to side.
After a week we all saw the benefits. For the first time Owen could interact with his environment—he could touch a Busy Box, wield a crayon, even finger-paint. Although I’d long surrendered any hope of my child’s art gracing the refrigerator door, by the end of the week, voila: a sumptuous meld of greens and blues and yellows, Matisse-like in its confidence.
The following week, as Dirk was stretching Owen’s leg, he offered a proposal: he’d personally design and build a bed with various slings and therapeutic devices, all suspended from a lattice—a bed that would more than double the crib’s space.
“Awesome,” I said. “But how can I pay you?”
He’d charge me for only the materials. Personal labor he’d throw in for free, provided I’d tutor his 13-year-old daughter in English. “She prefers the soccer field to doing her grammar homework. You help her, I help Owen. A barter,” he said. “Like neighbors used to do, back in colonial times.”
Each Sunday afternoon at four o’clock, Kyra—a slender, feminine version of her father—would arrive, bike helmet in hand, sit at the kitchen table, and diagram sentences for an hour. She intuitively grasped the role of participial phrases, complex sentences; she just needed someone to spell out the elements for her. We drilled over and over: subject, predicate, direct object, conjunction.
And her quiz grades ticked up, from C-plus to solid-B to within striking distance of A-minus. Each Sunday, as she’d toss her knapsack over her shoulder, she’d say to me, “Dad’s been working all weekend on the bed, thinks it’ll be ready real soon.”
One evening, six months after we struck our bargain, Dirk brought the bed over in pieces, accompanied by Kyra, who ferried the headboard from her father’s Toyota like a professional mover. In his basement workshop Dirk had planed and varnished the wood, bird’s-eye maple from Maine—now, in Owen’s room, he winched the frame together and bolted the pencil posts, a Shaker motif. With Kyra’s help he attached the lattice above like a canopy.
Dirk threaded Owen’s left hand into a sling, positioning him on his left side so he could face the television screen. I’d rented a special DVD for the occasion: Hair. We all watched the opening scene in Central Park, “The Age of Aquarius,” where Marcy strutted in a tie-dye dress, feathers splayed across her short hair, and a thirty-years-younger Dirk did a black flip while wearing a paisley vest.
Kyra cracked the same toothy grin during the title song, filmed in the “Tombs” on the Lower East Side, where her father leapt and gyrated, throwing himself against a barred door in a staged prison riot. Beneath his intricate steps lurked a desire to move without any constraints, a yearning to neutralize gravity:
They’ll be ga-ga at the go-go when they see me in my toga,
My toga made of
Blond, brilliantined, biblical hair . . .
Dirk traced a calloused palm over his bald scalp, made a joke at his own expense. He hooked his arm around his daughter, leaned her into his wiry torso. I glanced down at Owen: my son’s hand bobbed up and down to the music’s frenzied rhythm, perfect as a metronome.