I’m in middle school when my heart forgets how to beat. At least that’s how it’s explained to me—it forgot. My dad and I are sitting in my cardiologist’s office for a routine visit, me still in my gym uniform from the school day. Dr. Ferry holds what looks to be a ’90s computer mouse over the left side of my chest, its cord trailing back to a bulky, Medtronic-issue computer console. I look up at him, at his glasses and graying goatee—reassuring signs of omnipotence to a thirteen-year-old. He’ll keep me safe. I’ve known him all my life.
Dr. Ferry uses his free hand to press a stylus to the computer monitor; I tense up. I know what happens next. The dizziness, the sinking feeling. The computer mouse will titrate the lead voltages down lower and lower, searching for the place where my natural heartbeat is left to fend for itself. The Medtronic pacemaker reps call this “testing the health of the leads.” It’s required every six months.
I gently wiggle my legs, hoping Dr. Ferry won’t notice. I’ve found it makes the dizziness less noticeable if I’m moving a bit—the tilting of the room harder to perceive, less scary. The computer blips every time it takes away another fraction of a volt, siphons off more power from the shiny metal disk keeping me alive. The first three go by without incident. By the fourth blip I can feel my heart rate slowing, dropping beats, growing heavy, like an old man trudging through snow.
The Medtronic reps call this part “losing capture.” It’s the moment when the pacemaker leads no longer have enough voltage to stimulate my heart, the shock too weak to generate a beat. Suddenly on its own, my heart starts to flounder.
The invisible pins push gently into my head and the stars come out on the white wall across the room. I’m in a panic but my heart can’t race accordingly. Call it cardiac dissonance: the mind scared to death, the heart dipping below thirty beats per minute. There’s a moment for me to realize this test isn’t like the others—that the stars are closing in too hard, my feet aren’t coming back underneath me—before my heart stops completely.
Our hearts begin beating only four weeks after conception. Some people believe they stop momentarily with every hard sneeze, but this is a myth. Unless it goes into cardiac arrest, a normal heart only stops beating at the moment of death.
In a completely silent and anechoic room, the human heartbeat can be heard from a meter away. Its vibrations roll in waves through the torso, constant, keeping time in the background. One would have to be dead to experience its absence. But in the split second after my heart stops—this unplanned dress rehearsal for my death—I learn what the absence of a heartbeat feels like.
My body is a drum, its last vibration fading out. My body is a temple, serene and contemplative, all voices finally stilled. My body is a glider plane, floating on warm currents of air in the eerie, engineless quiet. Then it falls to earth. The body is silent without the heart.
“Scariest moment of my life,” my dad will tell me years later, chin quivering at the memory. “There was nothing there. You were just gone, like someone had flipped a switch. One moment you were on. Then you weren’t.”
My eyes go blank, my skin drains of color, and I fold like a marionette—like a dead body. My dad manages to catch me and seconds later I jerk awake in the midst of a muscle spasm, my body responding to the sudden lack of oxygen in my bloodstream. I flail, disoriented as my leads blast their full payload back into my heart, jolting it awake.
My dad is speechless, doing his best to bore a hole through Dr. Ferry’s forehead with his eyes. I struggle to control my breath. I’m a big kid. I’m a big kid. I’m a big kid.
“Okay. Well, that’s good to know going forward,” Dr. Ferry says, never losing his measured, doctorly tone. He puts the computer mouse back in the tray where it will rest, awaiting a new patient to torment.
“What? Why, what happened?” says my dad, much louder than necessary, annoyed to need answers from the man who just momentarily killed his son.
“Up until now, Michael still had some underlying heart rhythm. When the leads lost capture, his heart would supply a few beats on its own—enough to at least keep him conscious until I ended the test and the voltage levels reset. That is no longer the case.”
Dr. Ferry tells me that, fascinating and unique as the heart is—as my heart, in particular, is—it’s still a muscle. The rules of muscle memory apply. The muscle learns an action, remembers that action, primes itself to repeat that action. But if the muscle sits around or allows an external source to do its work for it, the memory will fade and the muscle will forget. The heart will forget.
Pediatric cardiologists are masters of the heart-related fun fact, of anthropomorphizing the heart for the benefit of children. They’re able to butcher complicated medical information into something true enough to explain what’s happening yet simple enough for a kid to understand. Over the years, I become a walking repository of these images. They take over my imagination, color in my mind’s drawing of the scene inside my ribcage.
At nine years old, I’m told my heart is tired of the leak it was born with, is working harder than it wants to, and is growing too big because of it. I watch Fred Flintstone push a stone wheel up a hill, panting, swelling up larger and larger with each ragged inhale. Two valves called the aortic and pulmonary need to be swapped in order to help my heart get strong again. I’m told the two valves are collectively referred to as the semilunar valves and that the operation I need is known as a modified Ross procedure. I see two small half-moons, glowing in the viscous dark of my chest. Ross from Friends shuffles them around like a street performer, the pieces of a shell game.
After I’m ushered out of the surgeon’s office to play with the colored magnets in the waiting room, my parents are given the adult version. My heart is already larger than my father’s due to overexertion—this despite the fact I’ve just started third grade. My leaking valve is slowly exhausting it. An operation is needed to prevent heart failure. Transposing my own native heart valves will keep all the tissue growing with me—as opposed to a mechanical or pig valve, which would need to be replaced each time I outgrew it—but doing so is complicated and rarely attempted. The operation will take about eight hours, but if it goes well I may never need surgery again. My parents give the green light.
After the surgery, I’m still recovering in pediatric intensive care, when I’m gently told my heart has lost the ability to talk to itself—to tell itself to beat. I get a flash of a straight-jacketed man in a red padded room, coat buttons dimpled into the walls, yelling. It’s trying to send messages but they aren’t getting through; it will need help delivering those messages from now on. A beaming postman with a satchel slung around his neck enters the scene. The crazy man looks up at him and quiets down.
My parents learn that my atrioventricular node—a tiny but crucial feature of the heart, only one millimeter tall and three millimeters across—was permanently damaged during the operation. It’s one of the keys to relaying electrical signals in the heart, and therefore to the human heartbeat itself. Without it, my heart can no longer function unassisted. A pacemaker—an external version of which I’ve been hooked up to ever since my valve surgery—must be implanted. If at any point during my lifetime the pacemaker stops working correctly, if the leads ever fail or come loose from their implanted positions, I will immediately lose consciousness and be brain-dead in minutes.
When I find out my new helper postman will require more surgery, I start crying into the stuffed polar bear my mom bought in the hospital gift shop. I was promised only one, one big scary surgery, and then everything would be fine. Everyone here—the doctors, nurses, my parents—has betrayed me.
The doctors try to cheer me up. They tell me this is nothing, that in the ’50s pacemakers still had to be plugged into the wall; patients ran the risk of being electrocuted by a surge from the power outlet. I picture a three-prong plug trailing from my behind like a rat’s tail, just enough slack to cross the room. They tell me about an external pacemaker that weighed almost a hundred pounds and was powered by a twelve-volt car battery. They chuckle and I smile, trying to look amused, because I’m a kid and I know that’s what they want. Things have come so far, they tell me. Don’t worry.
I sit on the crinkly exam table paper, still shaking as Dr. Ferry asks if I have any questions about my forgetful heart. I don’t think it forgot how to beat. I think it’s just being willful. It’s a teenager now after all, just like me. Maybe it has grown to resent these intrusions—the knives, scopes, electricity—and is stubbornly trying to resist. It’s being forced to beat, the pacemaker shocking it thousands of times per hour and more than a hundred thousand times per day. Why wouldn’t it be angry? I see a slave, bleeding, driven forward by the crack of a whip.
The natural state of the living heart is one of noise: liquid motion, contraction and expansion. Not mine. The natural state of my heart—the state it returns to, left unaided—is quiet. It occurs to me that what my heart really wants is to be left alone. To stop, once and for all. I feel bad for it. I watch a sinking balloon being batted up into the air again and again and again, when all it wants is to lightly, silently, come to rest on the ground.
I recall this last image five years after that visit to Dr. Ferry, as I sit in my freshman dorm room, trying to convince myself it’s okay to commit suicide. Life has become too hard for a kid with so little impulse control, a kid who lost the fear of death years ago, somewhere between sixteen-gauge IVs, survival percentages, masks thick with anesthesia.
Now that I’m in college and away from home, my cardiologist writes me three-month prescriptions. Fewer refills, less hassle. This provides a mound of pills so high in my palm it requires an entire Nalgene full of water to swallow down.
I see the balloon bounce once, then settle.
Syracuse University Medical Center considers nineteen years old to be the dividing line between adult and pediatric care, so I wake up surrounded by the familiar trappings of a pediatric intensive care unit: cartoon fish on the walls, nurses with miniature koalas and monkeys clinging to their stethoscopes. The doctor says he gave me less than fifty-fifty odds when I was wheeled in. The thing that probably saved me, he believes, is my pacemaker. Irony practically rains down from the ceiling, but I can still feel the sticky paths my tears paved down my face. I’m unimpressed.
“Your friend saved your life, finding you when she did,” he tells me with a sad smile, unsure if I consider this good news or bad. “It’s all rather amazing, considering how rare pacemakers are in individuals your age. Essentially what it did was buoy your heart long enough to keep you alive while we got your blood pressure under control and flushed your system. Almost like a life raft—”
“Enough with the analogies,” I say, voice raw from the stomach tube, still bitter and blind to the wonder of every single beat. “I’m a grown man. I get it.”
Even a normal heart is awash in electrical activity, its output ranging from one to five watts—enough energy to power a small night light or clock radio—at any given moment. The sinoatrial node generates spontaneous pulses of electricity that spark every beat. This intrinsic electrical impulse means the heart, provided an adequate source of oxygen, can continue to beat from outside the human body. The heart will get along just fine. The body needs the heart more than the heart needs the body.
Last year, when I was twenty-six, my pulmonary valve was replaced again—this time using a bio-prosthetic stent. On X-rays the stent resembles a luminous basketball net, bright white against the grey smoke of the organs. It’s a miracle stents even exist, having almost never made it to the commercial market. The stent’s inventor was refused by every major medical company he asked for funding and had run out of ideas for where to turn. Just when all seemed lost, a man the inventor had met by chance on a golf course made a $250,000 investment, saving the project. The man was Phil Romano, founder of the Fuddruckers restaurant chain. He has since reaped millions in royalties from the success of the stent, which has gone on to save countless lives, including mine. Of all the heart-related fun facts I’ve learned over the years, this is my favorite.
I’m twenty-seven now. I see my heart for what it is: covered in scar tissue, still leaking in two different places, three pacemaker leads humming away. I have survived the things it has done to me and it has survived the things I have done to it. A tenuous detente has been reached, a place from which all parties seem to agree we can move forward.
I imagine my heart sighing contentedly as it bites into a Fuddruckers cheeseburger, grease running down grooves of muscle as it chews. I picture it smiling, grateful.
Rumpus original art by Mark Armstrong.