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.
—Hamilton Cain
Beautiful story of how we can each love our neighbor! There have been a lot of babies in my neighborhood being born in the last three years. Its incredible to see how we all as a community have come together as a result of it. I recently experienced an act of generosity when a neighbor gifted my 7 month old son a Zipadee-Zip . Best thing ever!
Hamilton:
I read this a while ago and never had a chance to comment. Beatifully written. Excellent read. Your son sounds amazing. Don’t stop writing! Best of luck to you all.
– Dennis
Hamilton! What a wonderful story. I had no idea the genesis of Owen’s bed. What a warm and happy story. Love it! Love the barter system too. I should really invoke it more often. 😉
Fascinating that Owen has both a G and J tube. I would think maybe the J tube because the reflux wasn’t controllable with the G tube? And I know people with J tubes and they are more complicated. (I’ve told my son’s story on this site, but not sure if it’s in the archives.) Well, either way, I’ve reread this story and again, and think it’s magical. I really look forward to reading the book. What a journey you’ve been on. But you tell the tale in such a warm, sensitive way. Nothing self-pitying about your words. Bravo to your… Read more »
Thanks so much, Laura, and I’ll be sure to look for your piece in the archives. Owen receives his nutrition and the majority of his GI medications through his J-tube; we keep the G-tube open, more or less, to vent out any pressure from his BiPAP machine and also to reduce the risk of reflux. That Owen has two sites is a bit unusual for SMA children, also a tad more complicated, but the surgeons recommended that we try it this way back in ’03. No major problems.
Best wishes to you and your family as well, and thanks again.
This is such a wonderful story. I feel like a know Owen a little bit now and having been a dance student of Dirk and Marcy for years, learning how Dirk transfered his amazing knowledge about movement and mechanics to help Owen start to experience movement in his own body is truly fantastic!
Beautiful!
Hamilton, I remember reading an earlier version of this story. It’s wonderful to see how it has evolved — very clear, sharp and effecting. I can’t wait to read your book, and I’m always holding a good wish in my heart for you, Owen and your family.
Great story. Powerful writing.
Owen is a great kid and you should be very proud for all you have done.
Cant wait to read the book.
All the world’s a stage, right? Beautiful.
‘Dirk’ graced our home as physical therapist for our son Akiva, who as Down syndrome and PDD for 3-years or so. Through rain, sleet, snow and hail, he’d show up – also in Boerum Hill – bike in tow, to work in his gentle way with our boy, a late walker and much delayed in development due in part to a seizure disorder as an infant. I too, enjoyed the tales of his work as a dancer years earlier, remembering a trip to BAM to see Twyla Tharp and Nine Sinatra Songs, still during his dancing career. ‘Dirk’ sold us… Read more »
Thanks, Laura, you’ve made my day! My son has both a G- and a J-tube so those machines are a major part of our lives. And while I’ve never thought of it him this way, Dirk *is* a kind of gruff, wise-cracking, male Mary Poppins — I’ll remember the comparison always.
Thanks again.
What a fabulous story! It is wonderfully worded and magically inviting. I love how these people pranced into our lives in that movie, which I loved so much! And how they tip-toed (or better yet, jeted) into your apartment that winter day like Mary Poppins! My son had a G-tube for quite a while and I know what it’s like to be tethered to machines and frightening situations. And I love this barter, in the truest, old fashioned sense of the word. I look forward to your book.