Katherine E. Standefer
He had known chaos, and been face to face with his dissolution.
They came into the library sometimes, to use the bathroom or free Internet, muttering as they slipped by, their bags rumpled and their eyes yellowed. What happens to the body, I thought, when the body becomes too much. Beside the entrance they lay on the lawn in clusters, with the tanned and crinkled skin of those who live outside. When I passed them at the river a man said, “And how are you, little lady,” angling his head to catch my eyes, and it was though he could see inside me. How I tipped at some edge.
In those weeks I spent every day at the Boulder Public Library, filling out job applications one hour-long slot at a time. The sooner I could get a job the sooner I would be considered a resident, and the sooner I was a resident of Boulder County the sooner I would be eligible for financial aid at the hospital—which meant the sooner I could have the heart surgery that had brought me here, uninsured, from my home in northwestern Wyoming, afraid I would die suddenly before I had arranged the care.
By this time it had been three months since I went into cardiac arrest in a parking lot on a random, gorgeous day in June, and one month since a Boulder surgeon had told me I needed to “make my arrangements”—in other words, to figure out how I would have a cardiac defibrillator implanted against the threat of our family arrhythmia. The ICD was a titanium box placed beneath the skin, connected to the heart by a wire that could discharge electricity to disrupt cardiac arrest. The procedure would cost around $180,000 without insurance.
This was 2009, at the height of the Obama-era health debates. I was twenty-four. Until the afternoon I woke up in a parking lot with gravel embedded in my forehead, I’d been pulling together random jobs so I could write: figure modeling for artists, cleaning cabins, inn-sitting for bed and breakfasts, writing grants, singing in a folk duo at the Farmer’s Market, and working as a skiing, climbing, and hiking guide. That afternoon, I’d ducked out of band practice to take a call. I woke to a sky full of jagged shapes, a white roar hissing out my ears, unsure who or where I was. By the time I could moan for my guitarist—by the time he found me lying there unable to move, and called my boyfriend—I’d already made up my mind not to go to the hospital. “I’ll never get insurance again,” I told my boyfriend, shaky and nauseated and aching, as he helped me sit up. In my head buzzed some idea about hiding what had happened, about buying insurance and going to a doctor later.
But we were too afraid. The same arrhythmia had put my younger sister, Christine, into cardiac arrest over and over again the last few years, and we suspected it had been the cause of death for my great-great-grandmother, who died mysteriously at age twenty in the cotton and pecan country of Hamilton, Texas, just five months after giving birth. The gene caused a heart to sometimes quiver rather than pump, leading to sudden death. For the year and a half since Christine’s diagnosis I had been the sister thousands of miles away from everyone else, avoiding getting an EKG, pretending it wasn’t possible that the genetic mutation could be mine, too.
We went to the hospital.
Like so many young, I’d found insurance both unaffordable and unnecessary. I had, up until this point, lived with a body that could be trusted not to act up. As the daughter of a corporate attorney from a Chicago suburb, I didn’t suffer any of the conditions that came with structural inequities: childhood diabetes from a lack of access to nutritional food or asthma from living in an industrial neighborhood. My check-ups had been regular, my infections met with antibiotics, physical therapy for a badly sprained ankle no big deal. My mother, now a preschool teacher but home for most of my childhood, could easily ferry us to the dentist or pediatrician, in a car that always ran. The only really sick people I knew were old, and covered.
The importance of access to health insurance hadn’t been impressed upon me because I’d never seen what could happen without it.
Once I was diagnosed with the arrhythmia, insurance was altogether out of reach: any insurance plan would exclude this “preexisting condition.” Wyoming, the fiercely libertarian state where I was living at the time, didn’t extend Medicaid to those with overwhelming medical bills, as some states did; it didn’t have a state-subsidized high-risk pool for those who were rejected by private insurers; my small local hospital provided financial aid but didn’t do cardiac procedures; the resort town where I lived was a great place to cobble together a living between ski runs, but a very bad place to seek jobs with insurance—especially then, in the depths of the recession. I’d spent weeks walking the washboard road along the National Elk Refuge beneath summer rain clouds, brainstorming how to do this without leaving my life behind. In the meantime, every palpitation seemed a death knell. I led the hiking trips I was slated for because I needed the money, but I worried I would go into cardiac arrest deep in the forest and this time not wake up. Eventually, exhausted and scared, I got in the car and drove south to Boulder, where my sister’s surgeon had said he would donate his fee if I had the procedure at his hospital.
From vast, silent Wyoming, Boulder seemed a busy, hot hell, its streets crammed with packs of undergraduates and the ringing of jackhammers. But the bumper stickers on the Subarus there advertised it as “The People’s Republic.” It was both a rich place and one that believed in social welfare. I’d learned, after weeks of researching online how other people with preexisting conditions were getting care, that Colorado had a high-risk insurance pool I might be able to get into after six months of residency. And, Christine’s cardiac nurse had told me, the hospital had an indigent care program, which—if I became a resident—might cover some of the procedure costs beyond my surgeon’s control.
Boulder, I fervently hoped, would help me.
My first nights in town, I slept on the floor of my sister Christine’s sorority house on The Hill. The hallways were full of girls with glossy, highlighted hair, their mascara flawless and their sandals matching their shirts. Each bedroom door was busy with construction paper Greek letters, glued with bling. Downstairs, they lounged on plush couches and plucked bagels from a breakfast buffet.
Four years younger than I, Christine was in her freshman year at the University of Colorado when a series of faints landed her in the hospital. Still on our father’s insurance, getting an ICD was painful and scary for her, but it in no way required logistical wrangling. They put it in. Insurance paid. The deductible and coinsurance were billed. This is not to say her life went unaffected; it is not possible to wake up at nineteen with the paddles above you and go unaffected. It is not possible to have a metal box placed above your left breast and go unaffected, the hard nut of it bounding inside you in the car or crunching into your chest wall if you sleep wrong. No, everything shifted: her summer lifeguarding job became out of the question. Her friends were awkward. My sister could pick dresses that hid the scar for sorority formals, but she could not hide the errant blast of electricity she took that spring: 830 accidental volts when the wire moved inside her heart. She was whisked back to surgery, the wire and ICD replaced in the middle of finals.
I only mean that the shape of her life was altered more by the disease itself and less by the act of reaching for care.
In the sorority house, I rolled out my thin, camping air mattress, blowing into its small plastic mouthpiece until it puffed. I slept the three allowed nights at the foot of my sister’s desk. While she was at her restaurant job, scooping noodles into bowls, I borrowed her laptop, but she seemed resistant, wary of me. What I needed was more than what she had to offer. When my mother flew to town—presuming I would have a place she could help move me into, knowing I wouldn’t be able to carry cheap, thrift-store furniture alone—we pretended her first day was my first day, too, and moved our stuff into the more-official guest bedroom downstairs, where drunk students smoked on the ledge outside our windows into the early hours of the morning, the night punctuated with giggles and sudden shouts.
In the morning, bleary, we drove the neighborhoods in walking distance of downtown looking for For Rent signs that weren’t on Craigslist. An apartment was the other route to residency: the address and the electric bill led to the driver’s license. Technically, it was slower; jobs made you a resident immediately, leases helped document your ninety days in the state.
We bought a futon but left it at the store, with the owner’s promise that he would deliver once there was an apartment. We sought the inexpensive, but we bought knowing that I would be recovering from heart surgery: that a bed was a place I would inhabit painfully and for many days in a row.
All weekend I snapped at my mother. A hot rage flickering through me. At having to leave home for medical care. At the terror that I would die before I got it. At having to depend on my parents like this to make my life possible, and what if they stopped. All these logistics, all this heat and noise, what I’d lost, crowded my insides.
At one point I got out of the car in traffic so she could drive, too overwhelmed by decisions, slamming the door, and walking around. “I feel like I’m being punished!” she cried out.
On the radio, politicians calmly explained why extending healthcare to millions would ruin the country. They spoke of nonexistent “death panels” that would decide whether or not people received lifesaving care, without understanding that they were, at this very minute, acting as my death panel.
“No one in America should go broke because they get sick,” President Barack Obama wrote in a New York Times opinion editorial, eighteen days before I moved to Boulder to access heart surgery. That year 60% of bankruptcies would be due to medical bills—most of those toppled well-educated, middle-class homeowners—and nearly forty-five thousand Americans would die from being uninsured.
In the passenger seat, I sat with my face in my hands.
Then the weekend ended. It was time to take my mother to the airport; I was alone again. I had officially overstayed my welcome at Alpha Chi Omega. I began paying, one night at a time, for the University Inn.
The first time I turned into the parking lot, the screaming woman was standing in her window on the first floor with the curtains drawn wide open, hands dangling at her hips. She had the tough skin of a smoker, hollowed cheeks that looked more hollowed still from the way she was dropping her jaw. I watched her mouth move violently, soundlessly, from inside my car. Her shoulders shook, tired-looking, bleached hair piled on her head. Was she wearing a headset? Was she talking to someone I couldn’t see?
I put the car in park and craned my head around, trying to see. No one.
The parking lot was mostly empty, and when I got out I could hear her muffled voice against the glass. I tried not to look again, not to stare, stepping quickly toward reception, but her muffled, crackling voice followed me, would not shake loose.
The next morning, as I went to retrieve free breakfast from the buffet against the office wall, a big man stood solidly next to her door, talking quietly. He had a buzz cut and fat black sideburns. At his feet, the remnants of the night: a plate of little square hamburgers, cigarette butts, something folded into a plastic Lunchables tray. Aluminum foil. The woman hunched as she brought more trash out. She was quiet, but more broken-looking.
Her face would come to me in the day. The violent shape of a screaming mouth, muffled by glass. Wondering if she was someone’s mother. What she was on.
What had happened to her that brought her to the University Inn.
That night I stayed on the second floor of the University Inn. The hotel sat at the bottom of The Hill, where campus transitioned into downtown—a sallow green motel with a thin, white metal rail running along each floor. Out my bathroom window, I could hear the people who lived down at the river, bluffing and fighting, jerking off into the bushes. The sound of them terrified me. It was not that I thought they were a threat to me; it was that I was seeing, for the first time, the way a life could come unwound. The way illness could mean one month without a job, then another—the way the bills could take you under. The way things started to happen to you, once you were slipping, that made it that much harder to get up.
When I saw them, I saw myself. A chaos opening its mouth to swallow me.
But for the grace of my father, I thought, lying dazed on the thin, ugly comforter. My own accounts would soon be empty; my car had been purchased in full years ago, but not by me. What kept me from chaos was, I could see for the first time, a matter only of whom I had been born to, and how they were willing to keep me.
During this time my boyfriend still woke each morning in our bed five hundred miles northwest, in the cabin duplex we shared beneath Snow King Mountain, the valley cool and socked in with summer rain. He drank coffee out of our mugs, used our cutting board. He sat in our dark, wooden living room, with the ceiling beams spaced to look like the insides of a boat. “Are you sure you don’t want me to come?” he had asked the morning I loaded up the car to go. I shook my head. “No use having two of us in limbo,” I said. “I don’t know what’s going to happen. You need to work. You can come once there’s an apartment.”
And so as I lived out of the plastic containers and duffels stacked in my car, up north my life somehow went on without me. It was a life I had spent all my teenage and college years hungering for, in that valley where an errant moose might turn up in the yard, where I could be paid to coach someone down a mountain through the snow and spend the mud season writing. Now I imagined myself, like a ghost, setting water on the stove to boil, to make both of us tea. Or setting off into the pine woods with a group of hikers, the knobby-kneed men in their safari shirts. At any point, I could have gotten in the car and driven eight hours home, arrived into our gravel drive, and put my hands in my love’s sun-bleached hair.
But all summer death had stalked me through that valley: as I woke one night unable to breathe, as I spent my days working on the problem of how to access medical care, as I went down on the side of the trail, dizzy and scared. The medication I was on left me breathless, spinning when I stood from the table or tried to ride my bike, so that I found myself constantly unsure whether I was about to die from the heart condition or was merely reacting to a medication that held my heart rate too low. One by one the activities I loved fell from my reach; I felt death’s low, hot hiss. After the surgeon called, telling me to make my arrangements, I understood that to stay meant death—or at least bankruptcy, if I had the procedure and then shouldered the full burden of the bill myself. To go, to leave Wyoming, seemed in the end my only option. And so my life swung away from me. I drove south.
A body is our first home. My body was no longer safe, and yet there was no way to leave it. Nowhere was safe; the body itself needed to be amended for safety to return. I did not want that hard fist of metal inside me, nor a lifetime hitched to the American medical system, which I was now excluded from as a matter of policy. Once inside me, the ICD would be watching my heart all the time, a computer that counted beats per minute and recorded high heart rates, theoretically distinguishing between dangerous and normal rhythms. Even if I didn’t receive shocks, every three months I would need to have the system checked, the computer’s recordings downloaded. I would never again be just a flesh being. I would be a cyborg. In the back of the cardiology office, they would hook me to a computer to check my settings. They would use its buttons to race and palpitate my heart, making sure the device could still control it, looking for the sudden changes in resistance or responsiveness that meant something had happened to my device or wires. If something was wrong—like my sister’s wire that moved—I’d be swept off to surgery. And even if all went well, after three to ten years the ICD would vibrate lightly inside me, letting me know the battery was up. I would have three months to get the device swapped out. Another moment like this one.
To have the device inside me without insurance, then, would be a terrifying proposition, as I either went without the necessary maintenance or accrued bills every few months at out-of-pocket rates. I did not want to be a cyborg, did not want to make career decisions the rest of my life based solely on insurance access, did not want to let the dream of writing full-time slip away.
But I did not understand how I was supposed to live with death staring me down like that, if I went without it. How I was supposed to do normal things. How I could possibly forget.
One evening, a crowd of drunk boys passed loudly through the parking lot of the University Inn. I went to the window. In the entire hotel, I could see only three of us looking: Me. The clerk, stepping out of the office with his hands on his hips. And the screaming woman. She pointed and hollered at them, swaying on the sidewalk outside her room. Then she turned, sighted me on the second floor, and shrieked. Jabbing her finger over and over at me. Her mouth violently open.
I backed quickly away from the blinds.
In the morning she was everywhere, wandering around cheerful and apologetic. While I spread cream cheese across my bagel, she came into the office and extended her stay to sixteen days. “I changed my mind!” she told the clerk gleefully. “I have money, I have money,” as though it were wondrous. And just as cheerfully she passed me, chatty. “I’m going to get a Coke. They’re just so good.”
In those weeks I learned that “garden apartment” was code for disappointing basement. I filed into these dark and damp rooms, tailing property managers, looking for the place that would provide me an address for my driver’s license, key to establishing residency. Looking for the place I would recover, the place close enough to walk for groceries after surgery, during the weeks driving wouldn’t be allowed. Looking for quiet, looking for calm. Looking for a place that could order my life.
You can complain if the undergrads upstairs are loud, one property manager shrugged. You can call the police.
The good news, another said, was that Boulder had made it illegal to pull couches out onto the grass. I looked again at the bathroom floor. I wasn’t sure whether or not it was rotting.
There was one apartment that kept returning to me, one my mother and I had visited before the Labor Day weekend. This stretched the approval process out by days; everyone was gone. The apartment sat on a quiet street up on Mapleton Hill, an old Victorian converted into four rowhouse-style apartments: a second-story, wood-floored home where the sunlight fell dappled through the leaves of an enormous and ancient-seeming maple. The grocery store was a half-mile walk down the hill, and the hospital sat beside it.
More than anything, then, I wanted this to be my surgery house.
At the library I applied for every professional job I saw and every service job with insurance. I made seven different versions of my resume and walked up and down Pearl Street, placing them into the hands of people at bookstores and bars. Beneath my cheerful smile, there was a dangerous buzzing in me. The unraveling that comes with constant fear. One day at the library a woman in a stained ballcap ran in screaming, “They’s fighting out there!” The circulation desk called the police. Someone had locked someone else in a Porta Potty, then pushed it over, the woman said, and there was yelling, and before long the library and park lawn were covered in police, rolling their eyes and writing tickets.
I wish I could tell you that I tried to see in her the story that had led her there, that had left her haunting this space beside me. Instead I pushed in my earbuds and tried not to stare.
First there was the background check for the apartment. A lag. Then the necessity of a co-signer, for I couldn’t prove employment. My parents worried that if they cosigned for me they could somehow be held liable for my surgery costs. Willing to keep me afloat until I found a Boulder job, until the procedure, they could not weather the cost of this implantation out of pocket.
My best friend from college—the only twenty-five-year-old I knew who was a homeowner—offered to cosign. But she worked for a wild horse advocacy organization, and that summer there were round-ups on the Forest Service land in the Pryor Mountains of north-central Wyoming, so at night she was sending her faxes to the property management company from a motel on the edge of the wilderness, faxes that arrived only in parts: first all signature and no agreement, then all agreement and no signature.
Then one of the faxes finally went through—her work was done—but a top manager was required to sign all leases. He wasn’t in. And wasn’t in. And then he was, but there was no key.
Each morning I put my things into my car. Each day I called the property managers from the library. And each night I returned after the close of business hours to the University Inn, mounting the stairs to the second floor, quietly letting the door of a new room click behind me, surveying the painted brick walls, the fake wood headboard. I cried in bursts, drank red wine out of the plastic bathroom cups. The apartment nothing but a mirage. The surgery receding into impossibility. I had abandoned my former life, and no vision of the future emerged to take its place.
The air was hot and stale. The construction jackhammers kept at it.
On the night I did not know was my last night, the sound of the men in the park along the creek came in through the window more loudly than before. I had gone to the bathroom, to peer out, to look at them standing in tight knots, lighting up, laughing in sudden bursts. I could hear the men shaking out old comforters. Men who were once children, I knew. Men who were once boys. Who sat in classrooms. Who played. What the world had done to them. How the world had failed them.
Cracks were appearing in me, and their voices slid right through. The laughter that came through my window did not feel safe. Did not feel like laughter.
I leaned against the headboard, holding a mug of wine. I had been crying for hours. I had been on the phone with my mother, telling her I did not want to live.
“What are you going to do?” she asked me, fear in her voice, and I couldn’t answer. But I stared at the bottle of heart medication on the orange bedspread beside me, and I knew I could take them all. Beta blockers. A drug that had, as its side effect, low blood pressure. Vasodilation. I could go limp in this world. I could block out the men out there whose lives had shrunk to the banks of the river, the crazy woman with her frizzled hair and wild, late-night grief. I could block out whatever was about to become of me.
I saw it now: what could fix the threat of my own death was death.
Five hundred miles northwest of me, my boyfriend was arriving at board-game night.
Then my phone rang. It was a student from the private liberal arts college I’d gone to, just calling to update my address. I began to cry. Then to laugh. “I don’t know,” I told her. “I have no fucking clue what my address is.”
“Are you in a position to contribute to the annual fund?” she asked sweetly, politely.
“No,” I said. “No, I’m waiting to have heart surgery, and I can’t find a job.” I wept into my hands, the phone cradled against my shoulder. Full of the distance between the self in that hotel room and the self I had been in college. “That college is the nicest place you’ll ever be,” I told her. “Good luck to you.”
I hung up. And lay on the bed, extinguished. The bottle of pills on the bed beside me.
And then a voice inside me said, Put on your shoes.
The voice said, Go to the bookstore. Right now.
I walked down Broadway, stepped into the glittering storefront of the Boulder Bookstore. I bought a copy of The Amazing Adventures of Kavalier and Clay and another of The Alchemist.
I let myself back into the hotel room with a click. I read the books.
In this way, I lived until morning.
The next day, with forty minutes until the end of the business day, the call would come. I would race from the library back to my car, tears leaking, speeding out east to Fifty-Fifth Street, floating up the steps of the property management company. I would sign the form. I would cup the cool keys in my palm. I would drive to Maxwell Street, sling a backpack over my shoulder, and let myself slowly into the apartment, looking at the long windows and sweet, wood floors with a sort of awe. Calling the futon guys for delivery. Calling my boyfriend to say Finally. Laying myself down on the floor just to say Mine.
In the instant I was handed the key to a house, my car became just a car again, not a place I lived or might have to live. With the key would come an electricity bill, and with the bill clenched in my hand I would drive to the DMV to become a resident. A month and a half later, when I arrived at the Emergency Room late one night with chest pains, I would hand them a Colorado driver’s license.
My boyfriend arrived the next evening from Wyoming, his car packed with my kitchen table, my big comfy chair, my little nightstand, all the furniture I had dragged across the country with me for years like quiet family members. I had not until that moment realized what it meant to own belongings with that kind of history. To get to keep them with you, the objects that tell your stories.
I ran out to meet him in the street. Back upstairs, he held two hands behind his back. “Pick a hand,” he said, and I poked his right elbow. He drew forward a small box, and inside, a velvet bag, and inside, delicate lavender earrings, which he slid into the holes of my ears. He kissed me for a long time. Then he fell to his knees and gently put his face beneath my skirt.
For a long time afterward the University Inn became a burned place I drove by, a place I had lifted out of like a helicopter rising from a war zone, leaving others inside. On Parents Weekend at the University, the parking lot would fill with the parents of students, with football fans in for homecoming. I could see that it was a normal place, but it was not a normal place for me. I would live in Boulder for three years, and I would hear about the bodies they found by the creek. The overdoses, the murders, the ones dead of exposure. No doubt some of them went out by untreated medical conditions. When my body failed me—when policy failed me—I came for the first time to live at the mercy of the world, which for me meant the mercy of my parents, transferring money onto my debit card to string me along into some kind of future, in a town where I’d moved to beg public assistance. I saw that for others mercy came slimmer, less reliably, when it came at all. That the failures of policy fell differently on different bodies. All around me I saw the fragile ways people survived, the ways we could be made shells by suffering.
The job that finally took me, three months after surgery, was at a health clinic that offered care to the uninsured. My own insurance plan kicked in after ninety days. Sometimes on my way home from giving talks in the community, as I drove down The Hill toward home, my gaze flickered to the right, and I would feel for an instant the wobbly part of me, the woman who had for a moment lost her future. The violent shape of a mouth behind glass.
The screaming woman and I, at night we both grabbed hard at whatever could soothe us, and the answer was that nothing could soothe that kind of being human.