They're just hoping you're scared enough to ruin yourself for their benefit

It’s truly the illusion of choice and the illusion of motion

If you’d like to help me pay my stupid medical bill I wouldn’t say no.

In July of 1717 if you were a resident of London and you dragged your bones down to the banks of the River Thames you would have seen an extravagant procession float by. On a barge sat King George I and his retinue amidst a cavalcade of other boats including one packed with musicians. George was facing political pressure at the time from his son the Prince of Wales and wanted as far as the twenty minutes of research I just did informs me to show that he was still hot shit so he commissioned a piece from Handel to be played along the way which we know as “Water Music” today. He is said to have loved the performance from the fifty odd floating musicians on an attendant boat so much that he had them perform it four times in full on the trip up and down the river. It sounds like it was a very nice time had by all. 

I learned about all that just now while I was on hold with Harvard Pilgrim trying to figure out what exactly a medical bill I got last week was actually for because that was the song that was playing while I waited tinny flattened and crackling with static like on hold music always is for some reason. I guess so we’ll hang up. King George would’ve been displeased. 

lu k e o ‘ n e i l @lukeoneil47

Everyone loves this and on top of that understands what it means and why. Ah, the famous Treatment Room I definitely remember using for $920.30 worth of time and services.

Ostensibly the bill -- only $621 marked down from $1,575.34! -- was for an injection I got in my wrist in August of last year. You may remember me writing in here about feeling like all of the bones in my hand had been shattered into glass for about nine months straight without much in the way of relief as my doctors insisted wrongly that it had something to do with a pinched nerve in my neck and sending me off to months of pointless physical therapy that did nothing until the day I was set to get an injection in my neck and the pain Dr. said what the fuck no way you do not want to fuck with your neck like that this is your hand this is like a carpal tunnel thing go to a hand guy and so I did. This is of course after doing the normal cycle of being bounced around from one expert to the next who looked at me like I don’t know man then waiting a month at least in between each new visit only for them to say eh not my problem. 

The first time the hand guy must have shot me in the wrong place and it somehow got worse and it felt like I was wearing someone else’s larger arm bones inside of my skin for a week so then I had to go to another guy and he got it right this time and it hasn’t hurt since so thanks buddy. Not having that pain anymore is worth a lot more than $621 to me to be honest but the arbitrary nature of this bill still irked me so I called up my insurance and they explained it all right away lol just kidding. 

There is a line item on the bill called Treatment Room for which they charged me $930.20 and I being a normal person have no fucking clue what that means. I called the hospital billing me and they said idk call your insurance so I did and that’s when I listened to the nice orchestral suite and felt very calm. 

After about a half hour of waiting the nice woman on the phone told me the charges were for a $250 copay plus the balance of my deductible for the year -- if you want to get anything else done do it before it resets in June she told me so thanks for the tip. I asked if I should be expecting another bill like this for the second shot that actually worked and she said oh it looks like they didn’t send that one through I won’t flag it now and maybe they won’t notice it and bill you haha and I said haha thanks.  

The $250 copay was because I went to a hospital to have the shot administered and not a standalone place where it would’ve been the normal $25 copay or whatever she said and I said but that’s where my primary doctor told me to go and she said yeah they wouldn’t know how much it is gonna cost but you can always look up your benefits online beforehand and I said ok and then I said well I guess I’ll go and and fuck myself thanks for your time and I hung up. 

That is of course the point of any customer service call center to get you to go and fuck yourself but they can’t come right out and say it you have to come to that realization on your own as a buddy of mine pointed out to me earlier. It’s like a therapist can’t fix your problems for you they have to get you to work your way towards epiphanies on your own but the opposite of that. Don’t realize that things can get better realize this is how shitty they are and that’s that. 

I am mercifully not going to be fucked by the difference between a $250 copay and a $25 copay or even the full $612 I owe but during almost every other year of my life an expense like that would be a considerable amount to have to pay out on top of the hundreds of dollars a month I already pay for insurance in the first place. Something like half of all Americans wouldn’t have $612 kicking around in a pinch. 

This isn’t my insurer I have Harvard Pilgrim but I just saw that UnitedHealth the largest insurer in the country said revenues are expected to top $260 billion this year which is pretty cool for them. 

Here’s the thing though I should go fuck myself because what I currently owe is nothing. That is just a regular nothing day in the American healthcare system and me owing like $600 is basically owing nothing compared to what millions of people go through people like my buddy David Anthony a music writer whose work you may know from the AV Club and Noisey where he did a great series called the Shape of Punk that looked back at a number of pivotal records that turned twenty in 2018 like this one on Refused’s The Shape of Punk to Come or this one on Jets to Brazil's Orange Rhyming Dictionary or this one on At the Drive-In’s In/Casino/Out.

The other day David posted this bill he got on Twitter. 

David Anthony @DBAnthony

I LOVE HEALTHCARE!!!!!!!

David Anthony @DBAnthony

Since some people have been asking what cost so much, here's a better look. Surgery cost $380. "Hospital miscellaneous" cost $28,592.

I had been sort of aware that he had been going through some serious health problems from reading about them on his newsletter Former Clarity where he’s been chronicling his progress — and also still writing about punk music — but I was still taken aback when I saw that the other day. I mean sort of but not really because it’s an obvious immoral affront to decency but these sorts of things are not exactly rare. 

He wrote this about the moments before he was going under for surgery which I quite liked:

Then they started asking me if I wanted to listen to music before the surgery. 

“You look like you like music,” one of them said, which is both accurate and damning at the exact same time, but I politely declined. But they kept pushing. “No, come on, we can put on whatever you want.” And in that moment, I had an existential crisis. I never thought much about what my “last words” would be or any of that nonsense, but having to think about what I’d want to hear, possibly for the last time, struck me in a way I wasn’t ready for. It made me think about my friend Jeremy, and how his band has a song that I’ve thought about a lot during this process. It goes something like this:

If you fantasize about your funeral
I understand, I've been there before
If there's more importance in the music played
Than who'd attend
We are the same

So when I was hit with a version of that question in real-time, with three people in surgical face masks above me, I blanked. But their eyes were locked on me, and they were waiting for some kind of answer. So I just blurted out, “What’s the most brutal death metal you have?”

I called David up this morning to say what the fuck and here’s what he said. 

This is a terrible question but can you go ahead and summarize your horrific ordeal for us succinctly?

The long and short of it is I was feeling really weird, having balance and vision issues. I was like do I have a brain tumor? I couldn’t find anything that was wrong. I went to an eye doctor and they kicked me around. I went to a hospital. I was there for twelve hours one day before they released me. They did an ultrasound in my eye and a CT scan and all this stuff. They were like we don’t see anything you’re good to go. I was like I don’t know what’s happening here. 

Two days later they called and were like there are tumors on your carotid arteries, you know, you’re gonna wanna deal with that. I was like What does that entail? They said we’re going to send you to this person, that person, I just kept getting kicked around through a local hospital here in Chicago, which is pretty well regarded. They were really terrible. 

I went in for an MRI that week they called me back. They first took an MRI of the wrong thing, so now I was on the hook to pay for two of those. It’s not like they said we screwed up, you get a free MRI. That’s not how this works. I was going to specialist after specialist within the network. I would meet with someone, they would say, oh this isn’t really my department, so I would meet a neurologist, a vascular surgeon, a neurosurgeon. 

So what was actually wrong?

Essentially, in layman’s terms, the carotid artery where I had the tumors, that’s what brings oxygenated blood from lungs to the brain.  They said these symptoms don’t make sense. I was like I don't know, I have tumors in the pathway from A to B, it seems like it makes sense! But none of them wanted to do anything. They were like come back next year, see you then!

I thought this sucks, I don't want to live like this.

Were you in a lot of pain?

It wasn’t so much pain, but Ilead an active lifestyle. I ride my bike every day, and my writing and day job requires me to be present. I could feel my cognitive ability slipping. I was speling things wrong. Every morning for the past decade I wake up and I make coffee the exact same way. I was forgetting the steps, dropping things. I would be on my bike and feel like the ground was slanted.  I felt off-axis with the world. I could tell everything was flat and fine but I felt I was at a 15-20 degree angle to the right.

How long were you getting kicked around? 

That was the first month. I was extremely proactive. I was basically at the hospital three to four days a week hours at a time getting tests and essentially getting nothing in terms of feedback. In the midst of that I started the newsletter to put this out there. In the early going I couldn’t find any reliable information. As someone who never really had great insurance, didn’t come from money, it wasn’t like I was going to the doctor a lot previously. This was all new to me. Like what do you do? How do you navigate this process? How do you get a second opinion? Through doing the newsletter it landed in the hands of a mutual friend who called me out of the blue and said they had a similar thing. Tumors on an artery. They said I had to go to the Cleveland Clinic. They said they got dicked around for six months to a year at the same hospital I had been going to and they didn’t take it seriously until they almost had a stroke and died. They gave me a name at Cleveland Clinic and said they’ll know what to do. 

After about a month I made a trip to Cleveland. I was completely anxious and worried. What if they don't want to do anything? I had to drive five hours, get an Airbnb, spend all this money just to get out there. 

They took me seriously, but the problem was I had to go to Cleveland all the time. The amount of cost and effort and time it took to meet with the right people... I would have like four to five visits back to back in a day and if one fell out of alignment I was there for nine hours. There were a lot of expenses.

But they were going to do something for you?

Because I got a recommendation I was able to expedite the process and jump ahead. Then I was just waiting on a surgery date, which thankfully was only a couple months after. A couple days before Thanksgiving. It was pretty quick compared to a lot of people, but it was just because I was like I can’t work well or live my life I’m just going to put everything I can into fixing this. It was a very costly and intense endeavor. There was one day where I left Chicago at 3:30 in the morning and didn’t get back until 10 pm because I just couldn’t afford to stay out there in Cleveland another night. I was lucky to have friends that would lend me a car or drive me but it sucked having to ask so many favors. I had to tell myself I am a sick person and need to live that way. 

I didn’t realize until after but it was difficult mentally as much as it was physically. 

When did the bills start to happen?

Pretty much immediately. The first MRI, within the first week, I remember showing up at the hospital in Chicago, going up to sign in, and they were like Ok, here’s the bill for it. Do you want to pay for it now, or push it to insurance? The bill was $8,000. 

$8,000 for an MRI? 

Yes, and I had two of them. I knew at the bare minimum there was $16,000 worth of expenses right away, not including an emergency room visit, a CT scan, all the specialists I met with. I knew pretty early on this was going to be pretty expensive.

 Did you have insurance through a job or something?

I got lucky. I was freelancing for two years after I left the AV Club. I had been paying for my own insurance but it was garbage, which is true for a lot of people in this kind of discipline, people that don’t have a full time gig usually. I had it because I bike, so if I got hit by a car I needed that level of garbage insurance. 

I took a day job temporarily, but ended up sticking around. After about nine months I got sick. I was covered by work insurance, but it’s not great. That’s the big issue with private insurance in general. The nature of this industry is you’re paying for insurance not health care. They can find all manner of reasons to deny you, argue with you. When I found out about the Cleveland Clinic, the first thing I had to do was call my insurance and say I want to get a second opinion, is that covered, and is this clinic in-network? If they weren’t I couldn't do it. That’s part of the issue. I was lucky, lucky as a relative term, these things at least lined up in a way that I could at least access them. That’s not true for most people. Most people don't have an acquaintance who comes out of nowhere to say here's exactly what you do. And if they do have insurance there’s no guarantee that two states over in another time zone you're going to be able get what you need even if they accept it. 

Right, it’s a gamble. 

I was very aware I’m lucky to this degree, but by the time I was going to Cleveland I was getting bills from my local hospital to the tune of thousands of dollars. I set up a payment plan, like, I’ll give you twenty bucks a month for the rest of my life. This is not something I can pay. Now, every month since then, the bill has randomly doubled. I haven’t been treated by them since September. I called them after the new year and asked why does this keep going up? I haven’t had any new services since September. They were basically like insurance keeps changing what they want to cover and what percentage they want to cover. 

How is this the system? How is this the way it works? They’ll never give you a concrete figure because they can fuck with it at every tpoint. You have to go through and ask for itemized everything. This Tylenol was $45? I’m going to contest that. You have to have this energy where you say no to everything. It’s almost a full time job trying to litigate your way through insurance companies, hospitals, all this shit. 

From very early on I was aware this was not going to be cheap and potentially could ruin me. But I would rather be alive. 

You don’t want to say the name of the hospital that fucked you? 

It was Northwestern here in Chicago. To me I always thought was a good hospital. 

Yeah me too. I hear that name and think, for no reason, oh they’re good.

Right after I went, a former coworker’s aunt died at that hospital. She had cancer. It wasn’t the cancer that killed her, but they introduced an infection into her body that killed her. I was like oh fuck I shouldn’t be going here. 

I basically hit a dead end with Northwestern where they were like these specialists will see you in one years’s time, September of 2020. They just kept kicking me to different surgeons, and with some of them it was like you can’t get into them until the new year. It was a really bad experience. They were just going to run me around until either I gave up and accepted this or went somewhere else. It was really disheartening to see that.

I hear in Canada and the UK you have to wait a long time and that’s why the American system the best. 

Through this whole process and being tapped into the political cycle, I’ve seen that no one has a choice in their care. It does not work on your timeline anyway. These are specialists where maybe you can meet with them two days a week. You have to get approval from a doctor to even meet them. You can’t just call up a neurosurgeon. That’s not how it works. It’s truly the illusion of choice and the illusion of motion. You’re not moving forward, there isn’t progress, you’re being dictated what you can and cannot do by people who won’t even talk to you on the phone.

The thing I push back on whenever I see that “waiting times” thing come up is, if I would have still been in the Northwestern system, nothing would’ve happened yet. I’d still be waiting. It’s a pure fucking fallacy when people bring that up. There’s no basis in truth of us having a system that gets you through quickly. Maybe if you have a gunshot wound. But if it’s something like I had or many other people have nothing is going to happen for you. 

Who is your insurance company?

That’s the thing, it’s two companies for whatever reason. I’m sure it’s just my job trying to save money. It’s both Cigna and Allied. I had to contact Cigna to get approval to go to the Cleveland Clinic to get a second opinion, but it’s Allied who bills me. 

Very efficient. 

Yeah. To be real, I got lucky in that most of my work I can do from home in terms of my day job. I would just work from home, start my day, call whoever I had to call that day, leave the phone on speakerphone, and wait for someone to pick up. That’s the only reason this moved so fast. Most people can’t do that. If you can spend five hours a day on hold, yeah, maybe you can have it move as quickly as I did. That’s not most people. 

From what I know of you you seem like a decent guy, empathetic and so on. Did this whole process increase your empathy for others or just confirm it?

I have always fallen very far to the left on the political spectrum, to break it down in reductive terms. I grew up and got into punk rock and all that shit it entails, getting into Crass way too young precipitated me thinking this system is broken and we need to care for each other. I had experiences when I was younger, in high school, where my mom got breast cancer, my step brother got lymphoma, and my step father broke his knee and was out of work for months. There was a year where we just got ruined by the insurance industry. My step dad’s car got repossessed from our house because he wanted to keep his son alive but he was out of work. What do you do?

Until this point I've been fairly lucky and fairly healthy but I know that’s not true for everyone. I think there’s such a callous nature to the way people approach these things. This borderline libertarian virtue that if you just work really hard…. No.

I have been fairly healthy for the bulk of my life, and through bad luck from my dad, who I haven’t seen in fifteen years, I got these tumors that happen exceptionally rarely. That’s true for lots of people. We live in a society where we’re told to put ourselves secondary to a job, to some weird prideful sense of self worth through that job, and I think that is so foolish. I think the reality is we’ve built systems that do not care about us, and we’re being told it’s the person, who never really had an opportunity to get started, it’s their fault they have bad insurance. 

I have tens of thousands in student loans I had to take out. I grew up in northwest Indiana and unless I was going to work in the factory there was nothing for me to do. By the time I was eighteen I had to take on so much debt to go to college to get a job later that underpays me and gives me shitty insurance. 

There’s that constant rejoinder on Twitter, you can’t teach people to care about other people, but that’s really what the truth of this is. For me I unfortunately had to watch friends of mine not be as lucky in terms of the jobs they could take, the opportunities they were given, having to support a family way too young. The reality is it all just continues that cycle. Having health care that is available to people, even with a wait, is no different than what we have now, besides the cost isn’t crushing individuals and families and communities like it is here. The same can be said about the nature of access to college and the cost associated with it. These things are not the symptoms, they are the root causes of why people are still in poverty. I’ve seen this for all my life, how it’s affected my family, how it’s affected my friends, how it affected me. Getting a bill like that the other day for $120,000? I was like, this is fucking fake. This is not real. And if you press them on it they’ll admit it!  

Where do you stand in what you owe? 

I don’t know they won't tell me. I know that with Northwestern at present it’s like $3,000. With the Cleveland Clinic and with Allied, that bill I got said it was $120,000 in total and estimated my coverage was like $52,000, so less than half. Maybe it’s $60,000? I have no idea. Maybe it’s $70,000. Maybe it’s $100… But they just aren’t telling me. I don’t know why they are waiting so long or why they’re sending me estimated bills. Part of the reason I threw it out on Twitter was to show that this is what it’s like. $120,000 worth of services rendered, and apparently the surgery to remove the tumor cost only $380. 

I’d pay that to remove a tumor. 

Yeah, I can swing that! Then there was one line item, and many more under this, that was just Hospital Miscellaneous.  $26,000 for Hospital Miscellaneous. The Hospital Miscellaneous is what I paid for most. I don't know what that is. A lot people have seen this and reached out to say we should do a GoFundMe. It’s the saddest thing people have to do that. I pushed back on it since I don’t know what I owe. Maybe it’s only a few grand, and I don’t have that, but if I give them $20 a month for decades, that’s fine. If it’s $50,000 I may have to ask for help. I can’t do anything. 

It’s almost funny to get a bill for $120,000. Sure, ok dude, let me just pay that $120,000.

Yeah. Someone reached out to me and said the Cleveland Clinic is really good if you write a letter explaining financial hardship, they're good at forgiving this. I have another friend in the industry that was like they aren’t going to come after you. They won't pursue it.  Both of these people are telling me at least two different ways where if you just say I can't do it, they’ll just forgive it? 

It’s all already false, they're just hoping you're scared enough to ruin yourself for their benefit. I think that’s the big thing for me now. I don’t want to fuck around and ruin my credit and take on more debt, but at the same time they know it’s fake, I just have to figure out what button I can push to make them admit it. That speaks to the fact that it’s a crazy for-profit industry where they say we can take this $120,000 hit, it does not matter to them. They’re just showing their ass. That’s a big part of the reason I wanted to write about this. I wanted people to see there are paths through it other than what they’re telling you. You have power even when they say you don’t. I’m trying to put together a poor person’s guide to health care. I haven’t been able to do it yet because I have to deal with all this, but I think there needs to be a resource like here’s how you get through it because they won't tell you. 

Until then, and until they are 100% like you owe us $120,000, and we’re going to come after you, it’s like, say whatever you want, we both know this is bullshit. 

I know you and my buddy Dan Ozzi are tight. Would you like to talk any shit about him here?

I have so much shit to say about Dan. I will say that despite Dan and I having a public back and forth of hating each other, he’s been a real big help through this, and he wrote a sappy sentimental thing about me on his newsletter, which was very unexpected and out of character for him. Instead of clowning on him I’ll just say he’s a good dude and I’m lucky to know him. 

I liked the bit you wrote about the surgeons asking you about your tattoos. That always happens to me. 

I understand they want to make small talk and be human and I appreciate that. But the first tattoo I have is an Alkaline Trio tattoo with a thought bubble that says “whoops.” We don’t need to do this dance. I've got tattoos making fun of other tattoos, they don't mean what you want them to mean. 

Another vivid moment you wrote about was being asked what you wanted to hear for your potential last song of your life before surgery. 

That was a thing that crushed me since I wasn’t expecting it. I thought they would just lull me to sleep. Giving me the options to play the last song I’ll ever hear? What the fuck? I know how insane it reads, some of the stuff I wrote, even though I lived it, it’s going to read like shit you read online that people make up to make themselves seem cooler. My legit response was I don’t know, then they pushed, and I knew they wouldn’t let it go, so I said put on some death metal. They laughed and stopped pushing the issue.  

Well now that you’ve had time to think about it’s what’s the song?

If I were to make the choice I would do Outpatient by Jawbreaker because it’s very on the nose.