His son’s diagnosis—hypoplastic left heart syndrome—has one father thinking about the reasons to run.
Image by Norbert Bisky, Mass, 2013, oil on canvas. Courtesy the artist
When I was eight, I’d wrestle our pet mouse, Hulk, into a clear-plastic hamster ball, lock the lid, and watch the rodent rumble his way around my childhood home. From a distance, the contraption recalled a phantom bowling ball as it wobbled along walls, ricocheted off baseboards, and smacked stove and refrigerator. Sometimes I’d let Hulk roam unattended, and later I’d listen for the click of plastic to find him. Usually I’d find the cat, Smokey, mesmerized by the bubbled mouse and batting the orb with quick jabs.
Once, with a toe-tap, I helped Hulk careen outside, down the trio of concrete porch steps, and across the driveway toward Toltec Avenue’s slow-rolling suburban traffic. As the ball accelerated, Hulk stuck to the inside wall—by will or centrifugal force, I don’t know. I chased the container as it bounced toward my father’s silver El Camino lumbering into the driveway. My foot stopped Hulk milliseconds before disaster, and my father threw his arms in the air and shook his head. His AM radio blared a ball game so I couldn’t hear his words, but it looked like he said, “What the hell?” The mouse clung to the wall as I lifted his world—heart flutter shuddering gray fur and paws bloody from hanging on.
Years later, I imagine Hulk as the treadmill revs up. The red-and-blue lights on my son’s police car sneakers flash with every step as he runs with the stride of a six-year-old born with half a heart. Each footfall echoes within the curtained confines of the adult cardio-testing lab. The dozen wires snaking from the leads on Casey’s bare chest bounce with his gait and converge on a box lashed to his hip by an adult-sized belt. Casey grips the handrails at his sides, his arms nearly straight out at shoulder height—a miniature jogging crucifix.
Every three minutes the treadmill throttles up in speed and angle, and my heart hammers harder. I try not to picture my forty-pound boy fumbling a step, rocketing off the whirring conveyor belt and cartwheeling on the shiny hospital tiles. I straddle the rolling belt and crouch behind him like a linebacker, hands out, ready. Every skipped beat or foot stumble ruckles my spine, and I fight the instinct to snatch him up. I focus on his shoe’s blinking soles and hear his quickening breath.
“He’s smiling,” the cardiologist says.
For most of my life I despised treadmills. I preferred the open road in any weather over sweating in the musty gym on what seemed a glorified rodent wheel. I liked finding out what lurked behind the next turn. I enjoyed the pressure of keeping a healthy pace without a machine prodding me along. Weathering the elements added to the challenge.
Treadmills have a dark history. Whether for profit, war, or punishment, oppressors and entrepreneurs alike have harnessed muscle power to pump, grind, drive, lift, fan, turn, saw, and thresh for millennia. Tread wheels—which people or animals pushed—evolved at the hands of Sir William Cubitt, inventor of the prison treadmill in 1818. This device used prisoners’ steam to mill grain, and churned in lockups across England until the early 1900s. Inmates on some treadmills simply spun giant fans, generating nothing more than a gentle breeze: a warning against crime for the masses. Charles Dickens called the contraptions “a sad, terrible sight of human degradation—as painful to witness, perhaps, as to endure—with a ludicrous touch about it, too, that seems to add to the degradation.” Historians say there were four treadmills total that spun in American jails into the mid-1800s. Convicts in New York’s Bellevue Penitentiary treaded one such machine during ten-hour shifts in front of spectators from 1822 to 1824, until officials deemed the punishment too cruel and inhumane.
In the twentieth century, the treadmill rolled from behind bars into the hospital, where physicians used conveyor belts to test cardiac health. Doctors Robert Bruce, Wayne Quinton, and Paul Yu pioneered exercise cardiology in the 1950s and ’60s. Bruce’s treadmill test—which increased slope and speed every three minutes—became known as the Bruce Protocol. He said, “You would never buy a used car without taking it out for a drive and seeing how the engine performed while it was running, and the same is true for evaluating the function of the heart.” Nearly fifty years later, Casey was taking the same test, thanks to Dr. Bruce, the “father of exercise cardiology.”
While Dr. Bruce and his colleagues ushered the treadmill from the dark ages into modern medicine, the space race, an Air Force colonel, and stress hustled the machine into homes and gyms. Dr. Kenneth Cooper delved into aerobic fitness after he thought he had a heart attack at age twenty-nine. His physician told him he was out of shape. Cooper blamed the stress of medical school for his inactivity, and after his health scare, he started working out. Cooper, an Air Force flight surgeon and director of the Aerospace Medical Laboratory in San Antonio, Texas, designed the original physical conditioning program for America’s astronauts. He devised running tests that calculated VO2 max—the amount of oxygen the body transports and uses during intense exercise—for NASA and the military. Experts say V02 max is the best indicator of aerobic health, and the military still uses these tests today. The 1968 publication of his book, Aerobics, paved the way for the first home treadmill to appear later that year, when William Staub, a mechanical engineer, read it and realized there were no treadmills available for consumer use. He developed the PaceMaster 600, and presented the prototype to Cooper. From there, treadmills allowed millions to run in place. Websites report that roughly 50 million treadmills were sold in 2010 alone.
Casey and his twin, Ian, were born in 2004 in San Antonio, Texas, at Wilford Hall Medical Center, now Wilford Hall Ambulatory Surgical Center, the Air Force hospital where Dr. Cooper performed his early research. Within a few hours, Jennifer, my wife, and I went from having two healthy baby boys to facing the possibility of losing Casey. A pediatric cardiologist drew in red ink on the room’s dry erase board. The drawing, tucked between congratulatory notes and the twins’ birth statistics, showed a broken heart. I snapped a photo of the drawing and scrambled to find paper to take notes, scribbling the doctor’s words on the hospital’s brown paper towels. Dr. Bush, the cardiologist, told us Casey was missing his left ventricle, the heart’s largest chamber. The disease, hypoplastic left heart syndrome, affects one in ten thousand newborns, and it is universally fatal if untreated.
Casey had his first surgery, the Norwood procedure, when he was three days old. He barely weighed six pounds. They say an infant’s heart is the size of a walnut.
Dr. Bush gave us our options: take our son home and make him comfortable for the few days of life he’d have left; keep him on life support and wait for a transplant, which could take months; or do a staged reconstruction of his heart that would require multiple open-heart surgeries over several years. Dr. Bush said, “You have a tough road ahead of you no matter which path you choose.”
We chose reconstruction.
Casey had his first surgery, the Norwood procedure, when he was three days old. He barely weighed six pounds. They say an infant’s heart is the size of a walnut. The night before that first surgery, the lead surgeon took me aside and said, “You may lose your boy.”
I never saw my father, a lifelong runner, use a treadmill. A half-marathoner before it was in style, Dad often ran his lunches in 100-degree heat. When I was young, I’d pedal my BMX alongside him as he ran, then ride with him in the El Camino as he checked his mileage. When he wasn’t running he’d rep endless sets of bench press and dumbbell curls shirtless in the garage. I’d marvel at the beads of sweat that slid down his forehead, and off his nose, leaving dime-sized splash marks on the concrete. Sometimes he’d let me hoist five- or ten-pounders as he lifted. Standing next to him, with a matching sweat band, I’d imitate his exercises and loud exhalations. Sometimes after his workouts, he’d open the garage fridge, a 1953 International Harvester, grab a Pabst, and slide the can into a Styrofoam beer koozie. He’d offer me a Coke and strike up a conversation about the Cardinals or ask me about school or Cub Scouts. Once he mentioned how proud he was of his low pulse: “Forty-five,” he’d say. “Best the doctor’s seen in months.”
One fall morning in 1985, Dad woke up with white-hot pains spearing his chest and left side. Sweating and shaky, he later said he felt he was dying—the big one. He didn’t let on when he shuffled me off to school, unsure whether or not he’d live to see me that afternoon. My mom rushed him to the emergency room and, after a battery of tests, doctors diagnosed Dad as experiencing a stress attack. The doctors urged him to take time off from his police chief duties. Stress is standard issue for cops, along with batons, badges, and guns. He returned to work the next day. Two weeks later, Dad underwent a treadmill stress test, and he awed the doctors with his superhuman blood pressure and pulse.
By the time I hit high school, Parkinson’s disease had slowed Dad’s seven-minute mile. He’d conquered several half-marathons, including one that finished on the Indianapolis Motor Speedway track, but he’d never run our hometown race, the Valley of the Flowers half-marathon. My senior year, I was able to talk him into it. The race began in the murk of coastal California fog. The clouds burned off as we jogged along the chaparral and flower field roads. I still look at the picture of us at the finish line—the first time I realized I was taller. He’s smiling, with a big thumbs up. Little did I know that would be the only half-marathon we’d run together. Eventually, he stopped his roadwork altogether.
There were other ways to burn stress through exercise. Dad could still lift weights. We sweated away many afternoons lifting in his buddy Dave Jones’s garage gym. Jones—a weld inspector with a shaved head who crafted knives, rode Harleys, and had tattooed arms thicker than my head—lifted weights in steel-toes and jeans. He swilled Miller Genuine Draft from his garage fridge and called Dad the “toughest son-of-a-bitch I know.” At the time, my dad looked like an older version of Dave Jones: shaved head, goatee, cutoff shirts, and a tattoo on his right arm. On any given day, half a dozen of us cursed our way through sets as the afternoon sun made the shadows run long across Dave’s garage floor. More often than not, Pop outdid us with hammer dumbbell curls or cable pulldowns while mumbling about “old man power.” The day my bench press total overtook my father’s left me heartbroken and pleased.
Casey endured his second open-heart surgery, the Glenn procedure, when he was six months old. My wife and I rushed from the waiting room to the eighth-floor pediatric intensive care unit when the nurse let us know we could see him. Casey lay sprawled on an adult-sized gurney surrounded by beeping machines and fast-talking people wheeling him to his room. Tape kept his eyes shut. Tape held the ventilator in place. Tape ran vertically over the incision on his chest from his throat to his belly button. A line of red ran down the middle of the white strip. Tape on his arms, legs, and neck secured IV lines. Round heart-monitor sensors clung to his skin. A catheter tube, taped to his leg, crept from his diaper. Tape secured an oxygen sensor to his other leg. He looked broken and taped back together.
I didn’t know what I was watching. My kid could’ve been dying, and I wouldn’t have known.
The rack of IV bags running into my son recalled some kind of sterile tree. A trio of doctors directed the action of nurses, techs, and respiratory therapists. In continuous movement the team adjusted the ventilator, tweaked the medicines, re-adjusted the ventilator, and added medicines. Buzzers, bells, and alarms backed the steady directives. This controlled chaos kept Casey alive. I didn’t know what I was watching. My kid could’ve been dying, and I wouldn’t have known.
Numb, silent, and tearless, I stood and watched and held my wife’s hand. Her eyes were dry too. Crying wouldn’t help Casey.
I wished I were in a boxing ring or maybe a dim street with no gloves. I wanted to destroy someone or something. I wouldn’t tape anything back together.
The crowd thinned after they got Casey situated. Eventually, the surgeon stepped in. He wore a slick collared shirt and pressed khakis, hardly the bloody green scrubs I’d come to expect from movies. He appeared ready to golf, and I didn’t blame him. He cradled the same fist-sized wooden box that I’d noticed after the first surgery. I thought the box held some kind of lucky charm—a Buddha or rabbit’s foot. One nurse told me he carried special surgery glasses in that box.
“Casey’s doing okay,” he said. “Kept us busy in there, had a mess of scar tissue from last time, and he didn’t want to go on bypass. After that things went smooth. We got everything done that we needed to get done. You know these next twenty-four will be the roughest, but he’s a tough one.”
Dave Jones introduced me to the 1977 film Pumping Iron. In the classic bodybuilding documentary, Arnold Schwarzenegger, Lou Ferrigno, Mike Katz, Franco Columbu, and Ken Waller, among others, battle it out for the 1975 Mr. Olympia and Mr. Universe titles. The film alternates between the lifters and their pre-meet training, resulting in a sort of East versus West Coast feud, a muscular pre-cursor of Biggie and Tupac. Schwarzenegger appears focused, hilarious, arrogant, and lovable. He smiles when he flexes and delights in playing mind games with his competitors. When asked about working out with Columbu, Schwarzenegger says: “…Franco is a child, and when it comes to the day of the contest, I’m his father. He comes to me for advices. So, it’s not that hard for me to give him…the wrong advices.” Schwarzenegger embodies the Gold’s Gym, Venice Beach, California stereotype: beaches, blondes, tanning oil, paparazzi.
Ferrigno trains with his yelling ex-cop father and a bunch of out-of-shape city schmucks.
The airy and bright aura of the West Coast dissipates when the camera pans to the young and hearing-impaired Ferrigno, a brooding and intense underdog. Ferrigno’s Brooklyn gym is dark and small, wood-paneled, and red-carpeted. Instead of beautiful women and fellow bodybuilders, Ferrigno trains with his yelling ex-cop father and a bunch of out-of-shape city schmucks. He’s an ex-sheet-metal worker who groans and yells in his lair-like gym then gulps his pills and eats dinner with his mother. He’s huge, talented, and a little scary. You can’t help but like him, but you sense something lurking within. Throughout the film Schwarzenegger seems relaxed and confident while Ferrigno appears stressed and concerned. In the end, Ferrigno finishes third and Schwarzenegger wins another crown. After the contest, Schwarzenegger reclines on a couch in an “Arnold Is Numero Uno” t-shirt while smoking a joint, sipping white wine, and chowing fried chicken. Meanwhile, Ferrigno is quiet, and it’s clear that he’s already thinking about the next contest. He says, “It will just give me the motivation to train harder.”
Bicuspid aortic valve is the most common congenital heart disease. Instead of three leaflets, people with bicuspid aortic valve only have two. Schwarzenegger was born with bicuspid aortic valve, and in 1997, at age forty-nine, he underwent surgery to repair the condition.
Some research says that bicuspid aortic valve is a precursor to Casey’s disease. The thinking is that the valve deformation leads to abnormal blood flow and hinders development of the left ventricle. And Casey’s twin, Ian, suffers from bicuspid aortic valve. The doctors who first cared for Casey and Ian published a paper about them: “A Case of Hypoplastic Left Heart Syndrome and Bicuspid Aortic Valve in Monochorionic Twins.” The abstract says: “Since a genetic cause for HLHS has not been obvious, it is generally considered to be inherited in a multifactorial manner. Studies of twins are valuable in elucidating the genetic contribution to a birth defect such as HLHS. We report a case of monochorionic twins in whom one has HLHS and the other has bicuspid aortic valve. Predisposing genetic and environmental influences on individuals with identical genotypes, such as twins, may result in discordance of left-sided flow lesions.”
My father also suffered from bicuspid aortic valve.
Despite my father’s true-grit motivation, his weightlifting eventually fell to the side. Not long after the twins were born, the Parkinson’s disease made it hard for him to handle a fork, let alone hoist dumbbells. But he still walked. He’d walk until he wore out the tennis ball on his walker, which I replaced each time I visited. One medical study says that “training on a treadmill does help Parkinson’s patients develop better walking movements,” but Dad never needed a treadmill. His favorite poster showed a runner dwarfed under a background of trees and mountains, and the phrase “There is no finish line.” I quoted these words in my father’s eulogy.
Regarding treadmills, Dave Jones said, “It’ll be a cold day in hell before you’d catch me on one of those things.” My college roommate compared treadmill running to masturbation. “A means to an end,” he said, “but hardly the best.” Samuel Taylor Coleridge wrote, “To sentence a man of true genius, to the drudgery of a school is to put a racehorse on a treadmill.” A nineteenth-century article explains that treadmills reform “offenders by teaching them habits of industry.” And an 1887 article, “The Treadmill in America,” argues that the treadmill’s “monotonous steadiness constitutes its terror, and breaks down the obstinate criminal spirit.”
The concept of “monotonous steadiness” has leached into euphemisms about the modern workplace. Office doldrums break down the human spirit, just as prison treadmills shattered “the obstinate criminal spirit.” I hear people joke about “Groundhog Day,” or “running in place,” and realize they’re often longing for tangible products of their daily toil, just as roadrunners long for a route they can later drive and measure on their car’s odometer as opposed to the digital treadmill display. The same goes for weightlifters: they covet mass.
I wonder if the comic book character The Incredible Hulk is a byproduct of humanity’s gradual shift from hard labor to hardly laboring—the natural reaction to redlining in the cubicle—but experts say the green beast arose from Cold War paranoia. Stan Lee’s Hulk first appeared in 1962, the year of the Cuban Missile Crisis. The story goes: Dr. Bruce Banner, a nuclear physicist, was working under General “Thunderbolt” Ross at a New Mexico Air Force Base laboratory. Banner received a fateful dose of gamma radiation from a nuclear bomb test, and the Hulk was born. Stress is one of Hulk’s triggers, says the Marvel Comics directory.
My first exposure to the character was the 1977 television series. Bill Bixby played Doctor Banner, and Lou Ferrigno was the Hulk. It’s said that the producers passed on the chance to cast Schwarzenegger for the role. The storyline is slightly changed in the television show: Banner was researching the human capacity for superhuman strength during crises—what happens when a person summons impossible strength to save a loved one, for instance—when he received the fateful dose of gamma radiation. Banner’s quest was personal. His wife perished in a car accident when he was unable to rescue her.
What escaped me as a child is that there was no cure at the end of that lonely road.
When I was five, I loved the line “Don’t make me angry; you wouldn’t like me when I’m angry,” because it sounded cool, and I sometimes impersonated the Hulk by pushing on walls. One recent late night, I watched a rerun of the show and the final scene, of Banner hitchhiking on a desolate highway to a mournful piano solo, gut-punched me. The man is running a quest for a cure that will bring him self-control and peace. What escaped me as a child is that there was no cure at the end of that lonely road.
The recent film versions of the Hulk, with their computer-generated imagery and Ferrigno cameos, thrill my son, just as the cheesy ’70s show thrilled me. The Hulk’s popularity across the decades speaks to the timelessness of “good” monsters and perhaps an obsession with our own potential. It is scary to think that if we can’t save ourselves, neither can we save anyone else. A six-foot-tall cardboard cutout of the modern Hulk stands watch in the twins’ room, and they delight in targeting the green beast with their Nerf gun’s yellow foam bullets. Sometimes, Casey dons gigantic pillow Hulk hands and boxes his twin brother and me. Sometimes he leans into the walls with the green fists. The gloves’ sound effects roll crushing sounds and “Hulk Smash!” together with our combined laughter. When Casey smiles, flexes, and tells me I won’t like him when he’s angry, I think of Schwarzenegger smiling and flexing in the ’70s.
I think of bodybuilders’ enlarged veins sustaining their growing muscles, and I think of the extra veins that reach out from my son’s heart in search of oxygen, better circulation. These veins are his body’s attempt to fix the problem. Doctors call them collaterals; they only hinder Casey’s heart. Every few years Casey endures catheterizations to block these small vessels with platinum coils.
Casey’s third open-heart surgery happened when he was four at the Children’s Hospital of Denver. The days before the operation proved harder for all of us despite the surgeon’s confidence. Casey was bigger and stronger, but we also knew him better. He was a wild, talking, laughing preschooler, and we had to take him to the hospital for a major surgery that would hurt him to help him. At his end-of-year preschool party, they played a slideshow of photos to Israel Kamakawiwo’ole’s “Somewhere Over the Rainbow,” and Jennifer and I had to turn away. Other kids were getting ready for summer vacation, and Casey was getting ready to fight for his life. Nights before the surgery, after a few whiskeys, an older friend, mentor, and father of seven told me, “You have to be comfortable with the idea that you aren’t in control of this.” The night before we took Casey to the hospital, we went to the movie Speed Racer. We didn’t talk about the next day; we’d already done that.
Casey spent six weeks in the hospital after that surgery. I marveled at how he always wanted to get out of his bed despite having two chest tubes and multiple IV lines. The chest tubes ran into white boxes with blue water called chest drains. We’d place him in a blanket-lined wagon, hang his chest drains on the sides, and one of us would pull while the other followed behind, pulling his oxygen tank and IV rack. Eventually, he was strong enough to walk, and he’d pull the wagon—with the medical gear he was connected to—through the hospital halls himself.
Our 12-year-old daughter, Carly, has a pet hamster named Felix. She wouldn’t let us leave him behind when we moved from Virginia to California last summer. We carried his small cage into hotels, gas stations, and restaurants along the way. He survived the move, and these days he runs on his wheel for nearly an hour late every night. Sometimes I hear the wheel spinning as I lay in bed.
Carly’s a better small pet owner than I was as a boy. Felix has a ball, and Carly lets him roam the house, but she watches him the whole way. She’d never let him roll down the stairs or out the front door toward the street. And she protects Felix from the twins, but they wouldn’t hassle him too much, since they’re scared of getting bit.
Lately, when I’m stressed, I choose the treadmill. On the machine, I control the road unfolding in front of me, unconcerned about hairpin turns, potholes, or crazed drivers. The weather is static, and I choose the speed and pitch. I recall another of my father’s favorite quotes, inspired by Ecclesiastes: “The race is not always to the swift but to those who keep on running.” For a short time, I embrace this illusion of control and run from the hassles of the day, and my own Hulk moments, as loud music comes through my headphones. Or maybe I’m running toward some way to help my son. Either way, on the treadmill, I’m not actually going anywhere. I am not losing or gaining ground, and maybe that’s the best I can hope for. Sometimes I stare at the blinking heart-shaped pulse monitor on the machine’s digital face. I plus up the speed until my legs blaze. The green light flashes and sweat burns my eyes as I strive to keep up.
When the cardiologist told me that Casey was smiling as I stood guard over his treadmill test, I’d like to say I backed away to let my son know he could handle this on his own, but I didn’t. I couldn’t. I realize now that standing there helped me more than him. After three open-heart surgeries, a half-dozen cardiac catheterizations, extended hospitalizations, external pacemakers, chest tubes, PICC lines, central IVs, and endless checkups, the treadmill stress test was just a small challenge for him. I like to think he smiled on the machine because for those few minutes he felt in control. No matter how hard he runs, he’ll never have a whole heart. Still, he keeps on. He keeps pace.
Brandon Lingle’s work appears in the New York Times, The North American Review, Epiphany, The Rumpus, Narrative, The Evergreen Review, and The Mississippi Review, among others. His essays are notables in The Best American Essays 2010 and 2013. He is an editor of War, Literature & the Arts.