How much having lived is going to cost her
I’m still waking up from seizures thinking that if I didn’t hit my head that hard I’ll just risk it
Having suffered from seizures since she was very young Mary von Aue has become all too familiar with the cruelty of the American healthcare system. Sometimes almost as scary as the seizures themselves are the medical bills that follow soon after. The first thought she has now when she wakes up is relief at still being alive. The second thought is about how much having lived is going to cost her.
“I’m paying $450 a month for health insurance, and I’m still waking up from seizures thinking that if I didn’t hit my head that hard I’ll just risk it and not go in at all,” she told me. “Or if I did hit my head hard, fine, I’ll go, but I’m taking an Uber.”
She’s learned that lesson the hard way all too many times over the years considering how expensive it can be to have your life saved in America: a $15,000 bill in D.C. years ago, a $6,000 ambulance bill in Massachusetts, and to further highlight how insane our system here is, an experience receiving top notch medical care after a seizure in Turkey that set her back a grand total of $145.
More recently she found herself on the hook for $300 for a hospital visit in New York. Not terrible relatively speaking unless you consider that while there she received zero care whatsoever. After refusing to pay for nothing she started to get hounded by bill collectors.
Mary is an editor at the Observer and a friend and sometime colleague. I talked to her about what it’s like living with epilepsy, having to choose between paying off student loan debt or medical debt — the American daily double! — and what it’s been like to be forced to live under the yoke of debt almost from the day she was born.
“I feel like I sort of inherited this process from my mother,” she said. “That if you have a chronic illness you have to pay this monthly debt to the government. That’s what she did.”
You mentioned you were being sued by a law firm over a hospital bill?
Yes. They’ve been hounding me. I’ve had a lot of different law firms do this in the past. Even with my student loans I got sued by a debt collector, but the case got dismissed.
Had you stopped paying?
Yes. It was two different lawsuits. One was for around $20,000 and one was for $77,000. I fought them both, and I was able to win because they sued me in the wrong state, New Jersey, and I was already a permanent resident of New York. They also couldn’t prove those were the amounts I had taken out in loans. Even when I was paying I had collected so much interest that the amounts they were suing me for were significantly higher than the original loans I took out. So they couldn’t prove those numbers. The numbers seemed made up. I had been collecting interest, yes, but I had also been paying a lot, and my payments were never going to principal, they were only going to interest.
So your student loans exploded in interest so much that a legal team couldn’t even figure out what the real number actually was, and that undermined their case? If that’s not an indictment of student loans I don’t know what is.
They really couldn’t follow the numbers. And I had my paperwork of the original loans I took out. My interest rate when I signed on at 18 years old was 11%. At the time I think the highest it could be was 11.4%. My mother didn’t have any credit and I didn’t have a cosigner.
11% is insane. So where are you at now? Are you back on track?
I’m back on track because a lot of that was cleared and it became a more manageable amount. That let me focus on my medical bills. I think I’m under like $15,000. My goal is to finish that this year.
I’m finally under $25,000 and it’s taken me this long.
That’s why I stopped paying. Stopping paying was probably the smartest thing I ever did. I was so fed up. The more I paid the more I had to pay. Nothing was getting applied to the principal. At one point I was paying $1,000 a month and nothing was being applied to principal, so I just said fuck you I’m not paying this. So that let me start paying off my medical debt. Obviously not paying my student loans tanked my credit and got me sued and shit, but then a lot of the money got cleared.
What do you mean? How did it go away?
They sued me and it got thrown out of court. They never sued me again and they just stopped trying to collect. I had taken out private and federal loans. I’ve talked to a financial planner and those loans seem to be gone. There’s another woman that this happened to. (Stefanie Gray wrote about the experience for the Guardian in 2014). When I first got sued I found her on the internet and wrote to her. She said here’s what I did. Here’s my lawyer. She gave me the layout of what to do.
Seems like a risky gambit though. I would guess most people probably shouldn’t try to replicate it.
I would not recommend it. I had to represent myself. It was scary and it lasted a long time. But by not paying my student loans I was able to pay off a lot of medical debt. I had to choose one or the other.
And you have lots of medical debt because of your epilepsy?
God where do I start with the medical debt. As of 2011 I had six figures of student loan debt and five figures of medical debt. In 2012 I was a full time intern and server. My first full time gig was in 2014 and I was making $35,000. I couldn’t physically pay everything so I just had to choose.
This is a medical issue you’ve had your whole life right? Did you have health insurance? Or was it the same shitty kind lots of us have that still leaves you with all these other costs anyway?
I feel like I sort of inherited this process from my mother. That if you have a chronic illness you have to pay this monthly debt to the government. That’s what she did. She was a bartender in New York between 1978-94. Single parent. I was having seizures and she didn’t have health insurance. I was prescribed phenobarbital, which they didn’t realize I was allergic to, and it started giving me so many seizures I had to be put in a wheelchair because I couldn’t walk. One time they took me to the hospital and they said they had to keep me overnight. They kept me there one night and charged my mother $3,000. This was 1989. If I got a bill for $3,000 right now I could not pay that. I would add it to the pile. This was $3,000 in 1989, and she was a bartender.
We did a lot of “medical tourism.” I had a grandfather that lived in Canada, so she sent me to live with him there for a year. Eventually we found out that New Jersey had this thing, I think it’s called Jersey Cares, where they would give you a discount if your child had a chronic illness. Which was so nice of them. So my mom would use someone else’s address in New Jersey, and we would get care there.
The fact that your mother had to send her young daughter off to another country so she didn’t die or get crushed by debt doesn’t exactly fill one with national pride.
I had to repeat kindergarten because of too many absences. That was partially because of all the seizures, and partly because my mother, bless her heart, couldn’t get me to school on time all the time because she was bartending until 4 in the morning. My grandfather said I could stay with him. That’s when I got different doctors. They realized I was allergic to phenobarbital and they switched me to other medications. I got all this medical care and got to see neurologists, and they figured out so much of what was wrong with me while I was in Canada.
So that’s how I inherited the notion that I would have to pay a monthly fee for my illness the rest of my life.
You basically have a recurring auto-pay debt that kicks in every month so you can stay alive.
Right. In 2012 I had all this debt and I took an internship that was unpaid, five days a week. It was with a UN agency in D.C. We were trying to represent the interests of Palestinian refugees on Capitol Hill. I loved it, but it was fulltime and unpaid. To pay for that I was waitressing on the side, working five or six days a week. My schedule was insane. I was staying on a friend’s couch in Alexandria, and it took me like an hour and a half to get to work. At the office I would do 8-4 and at the restaurant I would do 5-close. The trains don’t go all night in D.C. so I’d often wind up having to take a car or something.
So I had a seizure out of exhaustion. It was my first one in years. I had been off the meds. I had the seizure in a really bougie part of Georgetown. It was an ambulance ride, and because no one saw how hard I hit my head they wanted to give me a CAT scan just to be sure. Because a CAT scan is extra fancy at a fancy hospital that one seizure set me back $15,000.
Did you have insurance at the time?
No. No insurance from the restaurant and nothing through the internship.
So you’re fucked. Did you get any sort of leeway from the people collecting that bill?
It went to collections. Collections are particularly cruel. They hound you. I’m afraid to open my mailbox. The letters feel more threatening than the phone calls. I don’t know why. The phone calls they kind of pretend they’re lawyers at first. They do this whole spiel “For legal purposes I need to confirm this is you can you give me your birthday?” and it’s like Fuck you. You called me.
I get that too on my bills. I’m always like, no, I’m not going to give out my identification details to some random person who called me.
It’s intimidating. And it’s hard to keep up with which bill is which at this point. Like I said, I’m pretty low at this point, and I really think I’m going to be able to pay things off by 2022. I’m intense about it and I think I can do it, but now it’s all just in the kitty where I don’t know what is what.
I was visiting a friend in Cape Cod, I had full health insurance at this point, and I had a seizure at his place. The ambulance had to come get me, and apparently my insurance didn’t cover out of state ambulance rides.
Of course. Why would it?
Right? And the ride, I’m not exaggerating, was $6,000. That’s not hyperbole. At the time I was paying $300 a month for insurance. Now I pay $450. It’s $900 total and my work covers 50%. I have the highest, fanciest insurance they offer now for obvious reasons. Even with $450 a month, any time I wake up from a seizure, I know I’m at least $300 poorer. But even though I have the fanciest option Blue Cross offers, I’m still taking Ubers to the hospital instead of an ambulance because I can’t afford it.
So what happened recently, you refused an ambulance ride?
Yes. I have wriggled out of stretchers like a fish. I have been like, no, let me out! This doesn’t count! They make you sign all this paperwork that says they tried to take you and you wouldn’t let them.
We’re both laughing right now but it’s the least funny thing in the world. I did a couple pieces on this issue in here, all the stories people told me about having to like fight their way out of an ambulance.
People told me about saying I am not getting in the ambulance! when they were injured. People walking to the hospital bleeding because they knew they couldn’t afford the ambulance bill. Fuck it, I’ll walk.
As much as we can both sit here and acknowledge how horrible that concept is I don’t think it actually even approaches how horrible it is.
It’s scary. Waking up from a seizure is so fucking terrifying. It’s waking up from a coma every time. It does not get less scary. Every time I wake up it’s like, oh good, I woke up. Some people die in the middle of a seizure. Your brain turns off. So either you wake up, or you go into a coma, or you never wake up. It’s a crap shoot. When I wake up I don’t remember what happened to me, but I know what the feeling of a seizure is. I don’t know where I am. I don't know what year it is. But it’s like, ok, I’m alive. Ok. Cool. And to do that when you wake up on a stretcher, you don’t know where you are, but you know you have to get off the stretcher when you’re already tied to it… it’s this weird fight or flight moment. I’m just coming to, but all of a sudden I have to be like, Let me go! Let me go!
Your first thought is I lived. Your second thought has to be about how much it’s going to cost you to have lived.
It’s really fucking traumatic. I have another funny story I can laugh about now. I had a seizure my first day in Istanbul. I was there for work but I was visiting the Hagia Sophia. When I woke up I didn’t remember getting on the plane and going to Turkey. The last thing I remembered was being in my kitchen in Brooklyn. I was laying on the ground and there were all these people around me speaking Turkish, and I had no idea what was going on. Finally someone in English said you had a seizure. Do you know where you are right now? I said I’m hoping New York. Everyone looked at each other really scared. They said do you know your name? I said Mary. Do you know what year it is? I always get this question wrong. I said 2012? They said it’s 2014 and your name is Mary but you’re in Istanbul. I didn’t even remember booking a flight or why I was there. It took me a few days.
I thought the punchline was going to be then they told you Donald Trump was president.
And then I went back to sleep! So I had an ambulance ride and a CAT scan. But they did even more work. Without any referral they brought me to a neurologist. I got all of these tests. They were so thorough. Experts. All this shit. And because I had all these experts the cost was $145. My Turkish friends there were embarrassed. They said I can’t believe they charged you that much money. We apologize. My friend was embarrassed on behalf of Turkey.
I think we can all appreciate the humor and absurdity of that. It’s like, no, no, it’s ok! I’ll pay the $145 for the full package. That seems reasonable!
I went there to cover the first municipal elections since Erdogan had taken over his party. So this was a peak moment of everyone talking about Turkey and how “backwards” and conservative it had become. It was “descending into Islamic extremism” etc. And I was like uhh I want to stay here.
So more recently you got charged for a hospital visit in New York after a seizure where they did absolutely nothing?
Right. No IV. No glass of water. I was sitting in my little section. Nobody came to see me except the lady with the computer who’s like I’m part of the finance team. How do you plan on paying? I had a seizure there! While I was laying there I had another seizure. My friend who was with me ran to go find someone and couldn’t. Eventually a doctor came by and said oh, you had another seizure? He was like there’s nothing I can do for you now. You need to go home and hydrate and rest. I said I didn’t have any IV. He said huh. I’m not sure why we didn’t get you that. So they charged me $300 for that. I was not going to pay any of it out of principal. They kept calling me and calling me. It got to the point where it was every day. Finally I talked to someone there and we negotiated. He said he lowered the bill to $100. If you pay it today you don’t have to pay anything else. I said that’s still absurd but fine whatever. Then after a while a collections agency comes after me for the $200.
Like I said, I’m paying $450 a month for health insurance, and I’m still waking up from seizures thinking that if I didn’t hit my head that hard I’ll just risk it and not go in at all. Or if I did hit my head hard, fine, I’ll go, but I’m taking an Uber. So even though they did nothing, it cost me $300 just to have the seizure.
Again, the first thing you think is am I dead? Ok, no, I woke up. Then the second thing is is this going to be the bill that means my entire lifestyle is gone? That $15,000 in D.C.? That ruined me. It changed my life for years. It dictated where I could live and work. It changed everything.
Well now I’m bummed out but I suppose that’s the deal with this newsletter.
As someone who reads it how do you think you usually make me feel?
I wrote the intro to our Discontents collective newsletter earlier this week. If you don’t subscribe to it you should! Here’s what I said.
I’ve been thinking a lot about killing people lately. No, not like that, relax. Although the Substack Strangler could make for a particularly stupid media sideplot distraction I suppose. A guy who leaves all his clues in his newsletter but can never get any subscribers to read it so he always gets away with it. The New York Post would love it.
What I mean is all the manifold ways people in this country with power of any kind use it to kill. Not directly mind you. Not with a knife or a gun. Instead I’m concerned with the much more mundane and pedestrian acts of violence that our legislators and other bureaucrats dispense perfunctorily under the cover of How Things Are Done. Most notable recently in this long and noble American tradition was the Senate vote on including a minimum wage raise in the Covid relief package over the weekend. All Republicans and eight Democrats including Jeanne Shaheen and Maggie Hassan of New Hampshire, Jon Tester of Montana, Tom Carper and Chris Coons of Delaware, Angus King of Maine, Joe Manchin of West Virginia, and, rather infamously by now, Kyrsten Sinema of Arizona, mustered their considerable powers, considered the plight of Americans currently working at the minimum wage, looked them in the eye and said:
No. Fuck you.
Or rather they didn’t look them in the eye and that’s sort of the problem. They made the lives of people struggling at poverty wages worse from the remove of and with the protective bracketing procedural politeness of the Senate. This, much like our legislators’ continued refusal to enact Medicare for All is an act of violence by another name. It is sending people to suffer and to starve and to scrape by and to slowly but surely die. It might take a bit longer than other more reliable forms or killing but it is killing all the same.
Sinema took the brunt of our anger for her no vote, coming as it did with a ready-made clip manufactured expertly to drive everyone insane, but then like clockwork the pushback to our collective dogpiling on our most epic Gen-X rockabilly anime Senator arrived.
“I stand by what I said: commentary about a female Senator's body language, clothing, or physical demeanor does not belong in a serious media outlet,” her press secretary Hanna Hurley posted, a typical comment from many others made only more delightful with the visual of her driving a nice boat in her profile picture.
I am sorry but no. Fuck us? Fuck you.
No matter what you say about a senator, no matter how rude it is, it will never match the violence they very calmly and cordially enact on millions of people as a matter of course. Sinema’s goofy thumbs down was a distraction, but it’s not really the salient issue here. It’s her and her colleagues' indifference to so many of our lives.
As I wrote not long ago in Hell World — this is Luke by the way — technically speaking, denying life saving and desperately needed money to people during a pandemic isn't killing them in the same way that shooting them would be it's just inserting the ball into the Rube Goldberg machine of pain that provides an exonerating and distancing sleight of hand between cause and effect.
Every single senator has killed more people than any random guy from your city doing 25 to life, they just get to do it in a way we have all agreed makes it not real for some reason. We're governed by serial killers!!
Here’s an honest question: Who do you think has been the cause of more deaths, Joe Manchin, or Ted Bundy?
[Jesse Pinkman “he can’t keep getting away with it” gif]
Elsewhere this week on my newsletter I wrote about another kind of bureaucratic violence after being driven to the point of madness by the new film I Care A Lot. In this piece I unpacked the film’s depiction of sickening elder abuse through the process of guardianship. The film, for all its flaws, made me even more enraged, I wrote, because I knew in my bones without having ever looked into it that as bad as this all seemed in fiction it probably wasn’t even that far off from how it all works in reality.
Turns out it’s not! This shit happens all the time and some form of it is legal-ish enough in basically every state in the country. We have sent our elderly to the wolves. Worse than that. At least wolves only eat what they need to survive.
Shortly thereafter I spoke with someone who works on these types of cases for the state of Arizona, where elderly people are drained of their savings by parasitic fiduciaries like the one Rosamund Pike plays in the film. Just in a much less horny way.
“The thing that fucking sucked about this movie was the movie part of it,” they said. “Making it seem like it takes a sexy criminal mastermind in a cool and sleek office with elaborate conspiracy networks of various corrupt care providers to do all that shit to vulnerable people.”
“It doesn't. Most of the harm happens very plainly, very boringly and incrementally, by shrewd everyday people who know how to make their billing look benign at a glance. They do shit like chip off a few hundred bucks here and there from multiple people, so it adds up over time. They submit their work to the court. Courts approve the submitted paperwork because they don't care or the staff are overworked or both, the judge doesn't look too closely because no one is actively dying in front of them and someone else told them the fees look reasonable so it's fine, and it just kind of pitter-patters on under the radar for the most part.”
No one is actively dying in front of them.
I know all of this is all obvious to all of us and yet here we are. It’s impossible to describe the country exactly as it is without being embarrassed that you sound like a guy holding a sign outside of the baseball park yelling at everyone. I’m not sure where that ingrained self consciousness comes from but it’s also part of the scam. We’re supposed to get used to all the death. After your first few kills they say it becomes a lot easier.