How to Not Die in America

By Molly Osberg, Splinter

10 February 18

 

n the second Tuesday in June, I start to feel fluish. If this is 2016 and I’m still a freelance writer, I’m losing money immediately on the assignments I can’t complete because my vision is blurry and my thoughts are erratic. If this is 2013, I am soon taken off the roster at the cafe where I work.

I am out of my mind with anxiety as I hobble to the clinic, sweating, and pay $60 for cough syrup, $300 for the 10-minute visit (if I even have that in the bank; it’s about a week’s worth of my earnings slinging coffee). Once I realize I can’t keep down the cough syrup and start spitting up bile, maybe I’m so feverish and broke I stay in bed without realizing the bacteria I’ve inhaled is more lethal than the flu. So perhaps I just up and die right there.

But let’s say I somehow make it to the hospital. A friend drives me, because a 15-minute ambulance ride can cost nearly $2,000, which I don’t have. I’m struggling financially and I’ve fallen behind on my ACA payments. My friend realizes in the car I’m not making any sense, and that’s because my organs have already begun to shut down. My temperature is well over 100. When the doctors can’t figure out what’s wrong, they submit me to a credit check before advanced treatment.

My credit is awful. I have a massive, unpaid bill from a few years back when someone made international calls on my stolen phone. Maybe, because of this, I’m transferred to a public hospital, where there aren’t 20-odd specialists to arrange an “unusual” surgery. Doctors are required to stabilize a patient, but they aren’t required to, say, stabilize a patient just long enough to keep them breathing and take them to another hospital with a full infectious disease wing to do something risky. So maybe that’s when I die, before they even figure out what’s wrong, because I’m not the type of patient whose financial health can support an elaborate, life-saving procedure.

But even if the hospital could be convinced to ignore my distinct lack of liquidity, in one of these alternate timelines I don’t have a parent with the time and language skills and resources to come down to New York and negotiate with doctors who need a legal surrogate to parse a series of difficult options. It’s not like I can do it myself, in a medically induced coma. And already, two days after being admitted, I am racking up bills for anesthesia, the input of six specialists, radiology, and antibiotics that come to nearly $30,000. And without the treatment, which costs an additional $12,705 for just for a few hours of the surgeon’s time, I am dead.

Let’s imagine, though, that I get lucky and my mother makes it to New York in time. She demands they do anything within their power to save me and puts up for the surgery, using her own credit. She convinces the paper-pushers she’s good for the bills. I am, after all, her only child. I’m in the ICU for 10 days; the baseline cost can be up to $10,000 a night, which doesn’t include the ventilators, the sensors, the multiple IV drips jacked directly into my neck.

Of course, this is not what happened to me. I am not one of the 28 million Americans who are completely uninsured, or one of the 45,000 people who die every year for lack of coverage. I am not one of the 3/4 of U.S. citizens who don’t have access to paid sick leave, and I don’t live in one of the 45 states without short-term disability plans. I’m not one of the 30 percent of insured consumers who are slapped with hefty surprise bills after a hospital visit. Which is why I did not become one of the millions of people who default on their medical debt every year, regularly making healthcare bills the leading cause of bankruptcy in this country.

Instead, on that second Tuesday in June 2017, I found myself in what I worry could be a fleeting moment in my life, one in which the institutions around me find it advantageous to protect rather than screw me. I find it baffling that, since my illness, well-meaning people have repeatedly referred to me as a “survivor,” as if the fact that I got to go on with my life had to do with some inherent moral strength, rather than the material forces put in motion long before I got sick.

That whole week last June, I worked from home, assuring my editor I’d be back in the office shortly. “I haven’t been this sick since I was, like, 8 years old dude!” I told her over Slack, the same day I would be put into quarantine. We have generous time-off policies in our newsroom, thanks in large part to our union. I was told to rest and get better. I didn’t.

A major feature of a person’s twenties is that while you’re ostensibly old enough to take care of yourself, you haven’t really lived through enough to be cautious. As someone with a pack-a-day habit, I got a little sick every year, and my response was to sleep (or work, or drink) through it until the issue somehow resolved. Before 2017 I don’t think I’d been to a doctor in about five years—though as was later reiterated to me by one chagrined specialist after another, my abysmal life choices up to that point didn’t end up making much of a difference.

Either from feverishness or denial, the conviction that I was simply a little sick remained well past any logical point. I have health insurance now, but I’ve spent portions of my life without it, and with my organs sputtering and a spiking fever I wasn’t exactly thinking clearly. I thought of the friend stuck with thousands of dollars in bills, picked up by an ambulance after a bike accident. Call it a reflexive reaction to living in a country where one-third of the population delays medical care out of concern for the cost.

After a weekend of still feeling off-kilter, I went to a clinic for cough syrup, which I quickly found I couldn’t keep down. Two days later, sweaty and half out of my mind, I stumbled back to the same clinic. I’d tried to brush my teeth and ended up spewing bile. The doctor didn’t even examine me: “The only way you’re leaving here is in an ambulance,” she told me. She wanted to call the hospital: I protested, still of the opinion that a hospital visit would be too pricey. I called a friend, who called a car, and we drove to the closest ER.

The sheer number of doctors involved in emergency medical care—especially when the cause of illness is unknown—can be staggering. Often, once a person is sick enough not to know what’s going on, an army of costly specialists are called in. Doctors with the highest out-of-network markups are the ones patients are unlikely to choose themselves: pathologists, anesthesiologists, emergency medical doctors.

I encountered them all when I was admitted to a Brooklyn hospital, though I only remember a fraction of the people who tried to puzzle out what was sending my body into septic shock. According to my medical records I saw six specialists in 40 hours. There was the anesthesiologist who assuaged my terror when I was put under for a bronchoscopy (I was afraid I’d wake up with a camera down my larynx), the infectious disease doctors who asked me about my sex life, how often I got high, my last period, whether I’d been anywhere near livestock.

For awhile the theory was that I had toxic shock; they poked around for a tampon, didn’t find one. There was a mass near my lung, but it wasn’t cancer, despite what one doctor seemed to think. I was put into quarantine and texted a friend, desperately cheerful: “They’re treating me like a patient in world war Z right now.” The joke was short-lived when I started playing scenes from those films in my head. I added: “I’m jusyrinf nor to panic everyone like I’m dying lol.”

I was having an awful lot of trouble breathing. My liver and kidneys had begun to shut down, and I was informed something was off with a valve in my heart. My hands and feet turned bright red. The unspecified infection winding through my bloodstream was similar to one common with intravenous drug users, so I testified to a stone-faced doctor at length about the kinds of drugs I do, and how often, and how recently. I got the distinct sense he thought I was lying. He asked about my mental health, which I found odd.

But when I was finally released into a small private hospital room, I wondered if I could actually believe myself. The room’s green carpet and green walls looked all wrong, oddly monochromatic: I thought maybe I was going crazy, maybe I had in fact taken drugs. I was suddenly very afraid to be alone.

What I know about the next week is mostly pieced together from what I’ve been told and what’s listed on some of the 100-plus insurance claims filed on my behalf. At some point, my retired mother arrived, and I told her that while I was glad she was there, she didn’t have to come: It wasn’t like I was dying (an objectively false statement I have no recollection of making). My boyfriend called my boss and told her not to expect me back at work any time soon.

A week ago, I had been a healthy person in her twenties drinking in a friend’s new apartment in Fort Greene. Now doctors tried to give me updates on the tests they were doing and I couldn’t understand what they were talking about, even as I could objectively sense how corroded my processing power had become. I spent months of my life at the mercy of people with the capacity—and perhaps more importantly, the incentive—to care for me.

The hospital consortium I was admitted to has declined, of course, to comment on what options patients have when they can’t immediately cough up cash. My surgeon, a lovely man who appeared completely elated by my recovery—and took a photo, before he operated, of the ping-pong-sized hole in my lung—told me recently that while the surgery he performed on me was perhaps “unusual,” my health issue was “certainly high risk.” He doesn’t get involved in insurance-related issues, obviously; he has paper-pushers for that. “What I do know,” he wrote in an email, “is that insurance can limit and make our lives difficult, as they commonly deny patients access and healthcare they deserve.”

Sherry Glied, the dean of New York University’s school of public service, put it a little more bluntly: Under even the lowest Affordable Care Act tier, she says, I’d be paying the out-of-pocket maximum—a little over $6,000—and perhaps I’d be limited to in-network doctors. (The hospital I visited has maintained a relationship with an Affordable Care Act-affiliated insurance provider since 2014.) But depending on an individual hospital’s policy, and my credit score, and where I happened to land, whisking me to a second hospital with a dedicated lung surgeon to be treated by some of the country’s best infectious disease doctors might have appeared to be more trouble than it was worth.

The surgeon at the second hospital told my mother I had maybe a 50-50 chance of surviving the surgery, but that if they didn’t do it, I would certainly die. She signed all the paperwork and sent my boyfriend home and, though she’s not a drinker, went directly to the bar, where she waited for the surgeons to remove a not-insignificant portion of my lung.

As they found when they tested the necrotic tissue removed from my chest cavity, I had contracted a relatively rare form of strep—the septic shock shutting down my organs had been kicked off by a ravenous bacteria that incubated in my lung before bursting a hole clear through it. In topical manifestations, this form of strep is referred to by some journalists as the “flesh-eating disease,” feeding as it does on the fatty tissues right beneath the skin. In my case, it wormed its way into an organ and began to kill everything around it. The mortality rate for infections like these can be anywhere between 40 percent and 70 percent in adults. Many people lose limbs or parts of their face. Others require breathing machines or dialysis for the rest of their lives.

In the weeks that followed, medical residents—all General Hospital-level attractive, to my great surprise—clustered around with clipboards, asking hundreds of questions to place my illness and recovery within the continuum of their previous reports. “I’m just trying to understand how you got this,” said one, after a 15-minute interrogation about my sex life. Months later, my infectious disease doctor, who wore a different pair of brogued leather shoes every time I saw him, would tell me with a half-smile it was actually probably just bad luck.

To compound the sheer sense of unreality and deeply unearned good fortune, I read a CDC study recently noting that for some reason, patients who contract similar kinds of severe strep infections are much likelier to survive during summer months.

When I was woken up from an induced coma up a few days later—about a week and a half after I’d first gone home sick—I couldn’t understand what everyone was fucking crying about. I slowly discovered the humming tubes coming out of my nose and torso and bladder, mostly by way of hospital staff adjusting or emptying their contents. There was a whole bouquet of IVs in my neck. But my friends knew all about the machines I was hooked up to. They had complicated inside jokes about them I didn’t understand, nicknames for (and crushes on) my ICU nurse.

Recovering in a hospital like that, you only really do two things: try to follow directions that seem offensively simple until you try them, and hungrily anticipate the schedule of pain medications—the latter of which were being injected directly into my bloodstream in icy spurts. People kept telling me to breathe into whatever contraption was attached to my face.

A few days in, I tried to watch cheerful TV shows provided by a friend, and found them too upsetting to stomach—a side effect either of the fever or the drugs. How could Rick take such obvious pleasure in damaging Morty? What existential despair kept Michael Bluth with a family that so abused him? I watched one of the later Star Wars and I’m so ashamed, but I cried. People visited me in shorts and tank tops, dripping wet, and complained about a New York high-summer humidity I could only vaguely place in my mind.

A few days in, I tried to watch cheerful TV shows provided by a friend, and found them too upsetting to stomach—a side effect either of the fever or the drugs. How could Rick take such obvious pleasure in damaging Morty? What existential despair kept Michael Bluth with a family that so abused him? I watched one of the later Star Wars and I’m so ashamed, but I cried. People visited me in shorts and tank tops, dripping wet, and complained about a New York high-summer humidity I could only vaguely place in my mind.

The paperwork had already been filed on my behalf: My paychecks were being delivered to my apartment, the doctor’s statements had been forwarded to the insurance company and the state. My co-workers sent a very nice card. I was incredulous to find it had been signed by our CEO. Unsurprisingly, emergency time off that comes with some sort of paycheck is vastly more common in white-collar industries. New York State’s short-term disability program paid about half of my salary; my employer paid the other.

It deserves to be said that while most everyone in the hospital I encountered was gentle and caring, and while my insurance paid for nearly everything, both institutions—like all in the medical industry—have in many other cases ruined people’s lives. The medical center where I spent nearly a month was investigated a few years ago for taking charity money but refusing to give financial aid to low-income patients. My insurance provider has argued innumerable cases against claimants: They denied a $400,000 treatment for breast cancer this past November, just to name one.

For reasons I will never fully understand, the occult transmissions between the doctors and the administrators and the insurance company left me responsible for $2,654.42 out of the $648,221.53 billed. And the paychecks I was getting came in handy for the copays and out-of-pocket costs, sure. But they also helped me weather what was essentially an extended convalescence.

Shortly after I was moved from the ICU, my boyfriend explained that my retired mother had canceled her foreseeable plans and would be staying with us indefinitely. I thought the two of them were out of their minds. But patiently my boyfriend, who was already struggling from taking (unpaid) time off, and who had sunk his own resources into preparing the apartment for my eventual return, told me what the doctors had been telling the two of them: For a month or two after I was discharged, I would have trouble walking and need to be monitored almost constantly for signs of a returning infection. Taking flights of stairs, cooking, lifting anything, even standing long enough to shower was for the moment out of the question. I would probably be in a lot of pain, with the incision in my back where they’d scooped everything out. And three times a day, I’d need to take a home-administered antibiotic through an IV drip that was impossible for me to rig up myself.

Once the IVs had blown through all the veins in my forearms and I could shuffle down the hall with some help, I went home. I was 25 pounds lighter. Outside for the first time all summer, I watched a woman amble down the street with a large suitcase and was in total awe, unable to imagine moving in such a casual way. I spent most of the next few weeks in bed; if no one was around to prop me up, I just lay there on my back. I had vivid, unsubtle dreams about all my friends growing bored with my lack of ambition. I couldn’t even read for more than an hour or two without exhausting myself.

The PICC line, a semi-permanent IV that runs from the upper arm into the heart, pumping antibiotics into the blood, would have cost between $1,300 and $3,000 without insurance to surgically insert. A nurse came by my apartment twice a week to check it for signs of infection and change the dressing. She told me she was in a reggae band, in addition to being a “healer.” She spoke approvingly of the crystals my more superstitious friends had left around. The company she worked for billed my insurance provider just under $7,000 for services and supplies.

Around mid-August they took the PICC line out. My white blood cell count went back to normal; I was cleared to drink by far the best beer of my life; the scabs left over from the drainage tube punctures in my torso fell off. I was pleased the surgical incision had missed my favorite tattoo, and less pleased when streaks of my hair turned gray and started coming out in clumps, or when my nails fell off—a months-delayed reminder of that time my body was preparing to die. I went back to work towards the end of the summer. I gave consent to include my miraculous recovery in a medical journal.

I assume people think surviving illness changes you because there’s something inherently character-building about pain. But what happened wasn’t a struggle, in the sense that through perseverance I overcame something difficult. For a fairly brief but unexpected period of my life, I lost my capacity to work, to advocate for myself, to navigate life and all its frictions. For much of my illness—intubated, drugged, feverish—I simply wasn’t there. In my absence, there were more than 25 individual doctors and specialists, an army of nurses, the friends who loved me enough to take care of my affairs while I was under, some unknowable number of insurance agents sitting behind desks in another state, silently placing checkmarks next to my claims.

I am lucky not for surviving the infection, but for being a member of a shrinking class of Americans whose lives can absorb a trauma of this magnitude, and for whom being thrown, insensible, into the system is actually a good thing. When people refer to me as a “survivor,” which they do often, they’re correct, but it’s not what they think it means: It has already been decided, especially now that it’s again fashionable to claim that healthcare is not a right, who is a designated survivor in this country. It has also been decided who is not.