“In a normal body with a normal heart…” –Dr. Tsao, Cardiology
We’re in a hospital room with the lights off, slow-dancing to Otis Redding’s “Coffee and Cigarettes.” The nurses leave us alone. Over the song, for the first time in three days, we can’t hear the beeping of Q’s monitors. I slip my hands in his back pockets and rest my cheek on his neck. As we spin, medical wires wrap around us like seaweed.
We are building a sandcastle too close to the sea. The more we sculpt the turrets and pack down the sand, the more the waves pull the other side back into the dark wetness.
In this analogy the sandcastle is our relationship and the ocean is Q’s congenital heart condition.
I try to steer my ship toward facts as though they are lighthouses. As though they could illuminate which shore to land on.
Fact: I am thirty-five.
Fact: Q is thirty-eight.
Fact: We’ve been together for nine months.
Fact: He has S, a five-year-old from a previous marriage.
I debate with myself whether this is fact or context: We want to get married and have at least one more kid.
Option A is ending a relationship with the person I love, the person I am building a family with, because it might be unfair or reckless (these are Q’s words and not mine) to have more children knowing he might not see their tenth birthdays. To avoid having to watch Q cry in the hospital bed because he feels like he’s letting them down. To avoid having to help our children through his death while also mourning. I imagine myself stroking their heads and whispering I know you miss him and how they’re going to be okay, while trying to steady my voice. I imagine our children filling the side of his bed where his body once was.
We would live separately, knowing we are both alive. This option says, somehow, that trauma in ten years is somehow not bearable but if it was twenty, would that could be bearable? Or, if you didn’t know it was coming and then it came anyway? I am confused by this option. It does not feel freeing. It feels like being trapped on a sandbar.
With this choice, I would lose the family we’re already making: going to the children’s library on a Sunday and sifting through all the books with green dots for “early readers,” looking for stories with animals and empathy for S to pick from before bed, reading to S by the light of a dinosaur lamp, testing out weird voices for all the different animal characters, getting over my embarrassment when Q overhears me, kissing S in funny spots like under his chin before turning out the light. So, when I face this choice the world feels blank. There is no landscape without Q and S.
But I must squint my eyes, try to imagine what could grow. I force myself to imagine that there’s someone else I could love as fiercely as Q. Or that there are permutations of my life I could be equally excited about. Like the possibility of growing old with someone.
Before I met Q, I hoped for two girls not far in age from each other. I definitely didn’t expect an ex-wife who controls where we live and whether or not I can afford a backyard. Who controls what school S attends. Who controls his too-frequent haircuts. But I have already released these hopes, these variations, like stones skipped and swallowed by the tide.
Option B, we build together. We build fast. With fury and passion. But also with strong infrastructure and support systems. I would not call it reckless at all.
The first time I went to Q’s apartment, I saw this large brambly branch strapped to the wall above his bed. I said to myself, This is my kind of weirdness. Since then, we’ve slowly added to it. We’ve strung small lights. We’ve placed a twisted sheet on top so cirrus clouds hover above our heads like dreams. We’ve slid dragonfly pins over the tips of the thorns to protect us. Sometimes, I hang my glasses on a branch before curling myself into the warm wave of Q’s body.
When we lie in bed, we talk about the children’s books we want to write together. One involves a doorknob that can open anything up. Another one takes literally the idea of losing one’s confidence, and how does the main character find it again? We talk about writing and performing a piece in which we ask each other the same question over and over until no new memories surface that the other doesn’t know. It could be as simple as, Share a memory that has to do with water? We look up at the branch above us and consider how to move in all directions: backwards into the memories that form us and forwards into a collaborative future that weaves between plans with S and plans for the two of us.
But Q rarely wants to stay in bed longer than necessary. He pulls me toward adventure in a way that makes me feel more alert. With Q, I feel pulled toward the tangible world. We jump onto the Brown line without any plans and off a few stops later. Suddenly we are in a park filled with wildflowers taller than I am. We walk through it with linked arms, breathing in and out, trying to trap the last of summer inside our lungs. My summer is filled with days where I stand somewhere unexpected with Q and say to myself, I want to remember this moment. A herd of deer leaping like choreographed ballerinas through a nature preserve. A blue beach umbrella that keeps rolling away from our towels. Packing S down with sand and waiting to see if he can bust himself out.
Fact: We bang against the refrigerator. We bang standing in the shower and sitting in the shower. We bang against the doorframe. We bang on the couch. We bang on the sunny roof deck. Wrapped in a sheet, Q fingerbangs me on the beach and then on our walk back, through the forested dunes, I suck his cock on the sandy trail. We bang biting each other’s lips, slowly. I want to get to know Q’s body and I want to get to know myself better through his body. With Q, familiarity leads to newness.
Fact: Then there is S. With the two of us, he gleefully grabs our hands and swings himself over the cracks in the sidewalk. Or, he drops lower to the ground and “crab walks” across the street as we hold on tight. I’m in awe of S because I’ll never entirely know how he got to be who he is—I missed those first four years. But I am also in awe of S because I see him grow every day and is there anything more magical than entering the imaginative world of a child and helping to expand it? We take all the pillows and blankets from the apartment and pile them on Q’s bed in a giant lump. We select the right stuffed animals to burrow through our “mountain.” Maybe this time, the fox helps the squirrel. Maybe this time, MooMoo the cow supervises from atop. Every time, the mountain finally topples when S requests to have his body thrown against it.
Fact: these stretches of joy are bookended by moments of emergency.
Here in the hospital, we are always on the fifteenth floor. Cardiology. But the room numbers change. Each time we return, it takes me a moment to orient myself: Which is the quickest route to the family kitchen? Which direction is the nurse’s station? What rooms to avoid looking in?
Whenever Dr. Tsao starts a sentence with, “In a normal body with a normal heart…” I know it will be followed by sad news: The valve surgery could be more dangerous than effective with Q’s heart. Another cardiac ablation would involve deconstructing the baffle in his heart. We want a drawbridge that will lead to more years together. Instead, our moat is flooded, begins to eat at the base of our castle. I murmur to myself, Q’s heart is baffled. We’re baffled by his heart. There’s a baffle in his heart. He lives with a baffled heart.
I am always surprised by medical terminology and how it unfolds.
When Q goes into a wild arrhythmia, heart rate over 240 beats per minute, his pacemaker zaps him five times in a row before the doctors can turn it off. It looks like a ghost is punching Q in the chest: his chest is thrown forward away from the sterile white pillows and his legs fly up from under the sheets. I have never felt more protective of and more helpless toward the person I love.
Between the second and fifth shocks, Q quietly pleads with the doctors, “Guys, please do something. Turn it off manually. Get medication to slow it down.” His voice is low and quiet. Being shocked this many times is called a “storm.”
I’m yelling at them. “Turn it off! Why isn’t the machine working? What else can you do? How will you lower his heart rate?”
I turn to Q, “You’re going to live; this won’t kill you even if it feels like it is.”
All the nurses and doctors look like they’re moving in slow motion. The machine is broken and it takes them three more shocks before they remember they can place a magnet over his pacemaker to prevent these defibrillations.
The pacemaker recognizes that there’s an arrhythmia but it responds to the wrong kind, which is why it keeps shocking him and the arrhythmia don’t stop. This is called “inappropriate shock.” I wonder what appropriate shock would be. I think appropriate shock is the aftermath: being afraid to leave the hospital even though it’s the last place Q wants to be, seeing a PTSD specialist, having a panic attack when reading to S the first night back.
I ask Q if, over the last six months, with so many surgeries and visits to the hospital, his relationship to his heart has changed. He responds, “Yes.”
He responds, “Now my heart feels like a foreign object inside me. It feels cumbersome.”
He responds, “Before this summer, it felt like my heart and I were on the same team. I’d say, Let’s pick S up and my heart would help me raise him in the air. I’d say, Let’s go for a swim, and we would. I’d say, Let’s bang Jules and we’d jump into bed with you. Now, I feel like my heart’s sitting in a chair across the room, unwilling and stubborn.”
I squeeze his hand.
Every fact has a feeling anchored to it.
Fact: In the hospital, Q apologizes every day. He asks me, “Please go outside and get fresh air?” Every day, I ask him not to apologize. I do not want to leave.
Fact: When Q thinks about S missing him, he cries.
That is the hardest thing to bear.
Fact: I do not want to be a widow at fifty-five. Nor do I want to spend the next fifteen years in a separate bed, unable to touch Q’s face before I fall asleep.
When we leave the hospital, we will know each other better and the adventures continue. We’ll bundle up, drive to a lit tennis court in the middle of a cold autumn night, and play catch with childhood baseball mitts. Q will teach me how to throw a knuckle ball.
Fact: We do not have an exact date this sand will collapse into that dark wetness.
Fact: We cannot move our castle farther from the sea.
Fact: There are no separate shores to steer toward. There is only the three of us loving each other. We can’t pretend the spray from the encroaching sea is a light rain passing over us. We can’t prevent erosion, but we can gather the sand.
Rumpus original art by Trisha Previte.