I am not a minority. I am not poor. I am not uneducated. In fact, I have the highest degree we give in this country. By many people’s standards, I am, if not wealthy, privileged. I have a job, even a career of sorts. I am white. It is true that for all intents and purposes I live paycheck to paycheck. But it is a decent paycheck, and I live fairly well. Better, I’m sure, than I deserve.
This is my health care reform story. Pay attention. It’s true, it happened just like this, it’s unencumbered by rhetoric or ideology. (Until the end, maybe.)
About six weeks ago, towards the end of my stint writing the Discovery series LIFE, I began getting chest pains. It had been a long haul, and the pressure was intense. There were many 14-hour days, and many working weekends. The pain began on February 13th. As is my habit with such things, I ignored it. The next day, it was worse, and was harder to ignore. I also noticed tingling in my left arm, which was disturbing, to say the least. My wife was in Tanzania for a shoot, and since I am the sort of person who is uncomfortable burdening others with his problems, I realized fairly quickly that I had to deal with this new development on my own.
So I dealt with it by breathing deeply, meditating, and going for soothing walks. None of this helped. In fact, the symptoms got worse. I was, as they say, shitting a brick.
Quite apart from my real fear of what might be happening with my body was an attendant fear, which had to do with being uninsured. Why was I uninsured, you might ask. A reasonable question.
I am a freelancer. In my world, which is television documentary, there are few staff positions for writer/post-producers. Most of us move, if we’re lucky, from one gig to the next. We don’t have an employer offering us benefits of any kind, let alone the extremely costly benefit of health insurance. We have to buy it ourselves, which is extraordinarily expensive. As it happens, I've been very lucky in my genetic inheritance: I don’t get sick. I don’t get colds or flus, I don’t break bones, I don’t have allergies. I have low cholesterol, very healthy blood pressure and a fasting blood sugar level to die for. I rarely go the doctor, never get hospitalized, and yet pay many hundreds of net income dollars every month for a service I never use. My son just started college, my father requires regular financial upkeep, and we had this thing called a recession. I got fed up. I made a stupid mistake. I asked myself what I was paying this money for. I canceled my coverage, enjoyed the extra money for three months and then started getting chest pains. The universe, it seems, is not without a sense of irony.
So as I stood there, alone in my house, with chest pains and left arm tingling, with no insurance coverage, I heard the voice of Clint Eastwood emanating from the walls: I had to ask myself: Did I feel lucky, punk? Well, did I?
And the answer was no, I didn’t at that moment feel particularly lucky. So, against my every instinct, and stepping way out of my comfort zone, I got into my car and drove myself to the nearest emergency room.
I did this because I had become enmeshed in the thought that, as distasteful as the whole idea of going to a hospital appeared to me, it would be a major drag for my son and wife if I died of a heart attack and all they could think of to put on my tomb stone was “He preferred not to go to the hospital.”
So, I drove to the ER of Washington Adventist Hospital in Takoma Park, Md., and walked into the waiting room. That was where the nightmare began.
The woman behind the bulletproof glass was, not surprisingly, far more interested in my insurance coverage (or lack thereof) than in my physical condition. But as there were few people in the waiting room, I was pretty quickly ushered into an examination room, where a nurse took a bunch of blood, administered an EKG and made me undress and get into one of those infamous hospital “gowns” that I’d managed so artfully to avoid for 53 years.
I won’t spill more ink on that gown than has already been lavishly doled out. But it did tend to set the tone of the entire experience. In the gown I was led down many halls until I came to the X-ray room, where a nervous young tech took pictures of my lungs and heart to make sure the former hadn’t been punctured and the latter wasn’t the size of a soccer ball. Then I was escorted back to the exam room to wait.
And when I say wait, I mean really wait. I had arrived at around three in the afternoon. It wasn’t until 6 that someone actually came to visit, and that was just to get me to sign forms that essentially absolved the hospital of all legal responsibility for me. Then before I could ask for someone to come and tell me what the tests had revealed, she was gone.
Another hour went by, and then two. There was nothing to read, and my phone was almost out of juice. I read the wall charts, the one on kidneys and the one on how to rate the level of pain you were experiencing. Another hour went by. It was 9 pm. I’d been there six hours. In the next bed, separated from me by a yellowed curtain that in its salad days had probably been white, was a crazy and extremely talkative person who had come to the hospital complaining of a bleeding asshole, but was really just trying to get prescription pain medication, to which she was undoubtedly addicted. My only entertainment during that time was listening in on the enraged shouting match between her and the doctor who came to deal with her.
Finally, at 10, a young resident came in and told me that all my tests were negative, but that they wanted to keep me overnight for observation. At this point, my frustration with the endless wait had made me bold, even in my pathetic little hospital gown. I said that I was uninsured and so I wanted to know why I had to stay the night if my tests were all negative; I also wanted to know how much a stay in the hospital would cost. With all the arrogance of which a medical doctor is capable, he told me that I shouldn’t be making this decision based on money but on my health. I said, okay, fine, but that is my decision, and I can’t make it intelligently if I don’t have the necessary information. He said that because I presented with chest pain and tingling in the arm, it was a good idea to take blood and do EKGs 2 more times over the course of the night just to see if anything changed. That sounded reasonable to me, but I still wanted to know what the price tag was. He said he had no idea. I said, fine, could he please talk to someone in the hospital who did have an idea. He said he wasn’t sure if anyone would know.
I said, Pretend you’re buying a car, and the salesman says buy this car but he won’t tell you how much it costs. He said, right. I said, how is it that no one in the entire hospital knows what the going rate is for staying a night? He said he’d try to find out.
Another hour went by. I saw no one. My phone was dead. I reread the kidney poster. The doctor came back and said that the accounts payable department wouldn’t tell him.
This is what people go through all the time in hospitals. They are demeaned, ignored, patronized, given no useful information, left alone for hours with no consideration demonstrated for the fact that they might be just a little anxious about what’s happening to them. It happens more to poor people, to people who don’t speak English well, to people of color. It happened to be happening to me, but it was a fluke, an aberration, and most likely it would never happen again. And even if it did, I would have resources that many others wouldn’t. I don’t think most well-heeled white people really have a feel for this.
90 more minutes passed. It was around midnight now, and I’d spent about nine hours in this depressing little exam room. The crazy drug addict had long since been carted off somewhere. Suddenly the curtain parted and a very small Asian man appeared with a wheelchair. He was there, I deduced, to take me to my room. I was not allowed to walk. Down many corridors and through many heavy metal doors we wheeled, with no conversation, as his English was not so fluent. Finally we arrived at the elevator, which took us to the 5th floor. When the doors opened, I immediately heard the screaming.
I mean screaming. Loud, desperate, agonized screaming. Like I had suddenly arrived in Bedlam. As we wheeled down the hall, the screaming got louder until we stopped at the room from which the cries emanated. My room.
I was allowed at that point to step from the wheelchair and walk in. This is what I saw. I saw a black man writhing in a bed, soaked in sweat, shrieking for all he was worth. It was clear why, from the word he was able to articulate every fourth scream or so: Morphine. The man was clearly in unbearable pain, and his cries were being completely ignored by the nursing staff. At the nursing station I could clearly see three or four nurses standing round joking, gossiping, shooting the breeze. They didn’t even seem to hear the screaming.
There was another sound in the room as well, competing with the noise of the screaming man. It was the television, which had been tuned to the Kids Network, where they were running a Hannah Montana marathon. At full volume. I don’t know if you’ve ever watched Hannah Montana – I never had till that night – but the thing you immediately notice is that what the characters are saying isn’t all that funny but the laugh track is unrelenting, hysterical and loud. So to understand what this was all like, you have to imagine the sounds of this poor guy begging and pleading for painkillers, followed immediately by uproarious laughter. To say that it was surreal would not begin to describe it.
The man never got his morphine until the morning. This minuet of agony and buffoonish laughter never stopped all night long. I hit the nurse call button many times to get them to turn the TV off, but they didn’t come for hours, and when they finally came, the woman said that the program soothed the man. Soothed!! My god. All it did was slightly mute the horror of his pain so that they didn’t have to hear it quite so clearly.
The nurses came in from time to time to take blood and my vitals and to give me medications just in case I might need them. Their blood-taking skills were pathetic and primitive. More blood went on my gown than into the tube. Their demeanor was one of indifference and contempt. They treated me and my cell mate like children … or criminals. They were unable or unwilling to give me any information, for example what my test results indicated, whether I was going to have an echocardiogram, or when a doctor might actually put in an appearance. They could give a shit.
Finally, at around 5:30 in the morning, I gave up trying to get any sleep. I had lines inserted into my hand and on both arms from botched blood-taking. I was covered in EKG and monitor patches, I was wearing a heavy piece of equipment for transmitting the heart data to the machines. A nurse came in and I asked if she could give me any information on what was coming up. Nothing. But nothing in a supercilious tone of voice, as though I was bothering her. My cell mate was now conscious and medicated, and when a nurse came in to check on him, she yelled at him angrily for taking out his arterial line, which he hadn’t. I was there when a tech had come in and removed it. But her assumption was that he was some kind of criminal, some recalcitrant child. He said to her in a voice weak from pain, “Are you my punishment?” I’ll never forget that. “Are you my punishment?” In a hospital. Where they are supposed to take care of you. Where you are desperately afraid and completely powerless.
At 8:00 a.m., a resident sauntered in with a clipboard and called out to no one in particular, “Spillenger?” It was clear that to her I was a burden, an irritation. She read off my lab results in a monotone, numbers that meant nothing to me. I asked her to please interpret. She sighed. Reluctantly she told me that all my numbers were normal and that there was no sign of a heart attack or any other heart abnormality. I said, okay, that means I can go home now? She said, No, she wanted me to be seen by a cardiologist. I asked when that might be. She said, whenever he got to me. I asked if there was any chance she could be more specific, if she could check to make sure that he knew he was supposed to look in on me, because I didn’t want to pay for another night. She said, it’s irrelevant whether I wanted to stay the night or not because they had to decide when that happened. I asked her if this was why she became a doctor, so she could talk disrespectfully and dismissively to people who were in her care. She turned on her heel and walked out.
As she did so, I saw the nurse pull shut the curtain separating me from my brother in the other bed. I said, “Don’t do that, please. We’d like to talk a bit.” She ignored me and kept closing it. I got up, stepped past her, and pulled it back open. I said, “Maybe you didn’t hear me. I want it open.” We had a staring contest for a few seconds, and then she left, muttering to herself.
My cell mate turned out to be Ethiopian, a man named Yohannes. He was a muralist who had designed countless paintings that now grace the New York Public Library, Grand Central Station and other public spaces in cities around the country. An intelligent, educated, thoughtful man who had a neurological condition that had made his arms and legs feel like they were in a massive vise that was crushing them. No wonder he was screaming all night. We commiserated at length on the horror of the place in which we found ourselves, the dehumanizing power of the madhouse, where all human feeling seemed to have been outlawed. After a little while his family arrived – his brother and sister-in-law. She had the warmest, most soulful smile I’d ever seen. She came up to me and took my hand and said, “I very much hope you are well very soon.” After only a day in this lunatic asylum, I wept with gratitude at this moment of human contact. Whatever people go to a hospital like this for, it is clearly made much worse by having to be there.
Soon after that, Yohannes was discharged and he got out as soon as he could. It was what I imagine leaving prison after a long stretch must be like. We embraced as though we had known each other all our lives.
I remained in the room for hours, not knowing whether they were going to try to keep me there for another night, whether the cardiologist was ever going to appear, or even whether he knew he was supposed to. My regular calls to the nurse’s station were ignored. Finally, a man appeared at the door and looked me in the eye and asked, “Are you Paul?”
I said I was, and we exchanged a smile, though I can’t be sure we were smiling for the same reason. I think he could feel my gratitude that he was there. He asked me to tell him everything, tell him how I felt, and what he could do for me. Imagine that! He proceeded to examine me with a stethoscope for 15 full minutes, listening to my heart in every conceivable way, until finally he pulled back took the stethoscope out of his ears and said, “Your heart is absolutely strong, there’s no trace of anything wrong with it. It’s time for you to go home.”
I looked at him for a moment, almost in disbelief, and asked, “So … you’re good at this, right?” That’s how difficult it was to believe that I was actually getting out of Bedlam. He paused briefly, not sure where I was coming from, and then suddenly got it, and burst out in this enormous laugh. “Yes, I’ve been doing this for quite a few years, and I am pretty sure I know what I’m doing.” We shared that laugh for a good long time. It was a great moment.
After it was over, I asked what he thought was causing my symptoms if it wasn’t my heart. He didn’t know but he wondered if I’d had any big stress in my life recently. As it happened, I had. He said that stress can mimic any number of conditions, and chest pain was a very common one. He said the arm tingling could easily be caused by a mild inflammation, and that the two happening at the same time was probably a coincidence. So I’m fine, I asked. He said, yes, but you need to take care of your stress problem … or it will take care of you.
He left, and two hours later, I was officially discharged. As I got up from the wheelchair and walked out the automatic doors, I felt I was entering a world I feared I might never see again. It had been little more than a day, and so you might think this is all an overreaction. But it’s not, and I suspect people have experiences like this every single day. It really doesn’t take much to throw your whole sense of who you are into doubt. As I walked to my car, I felt I had had a taste of hell, of what prison must be like, and of how fragile our grip on normalcy is.
But I also knew that it didn’t have to be this way, that this was not a prison but was supposed to be a place of healing. And I knew that while I had a get-out-of-jail-free card, by virtue of being white and being relatively prosperous, great numbers of people live with this kind of experience on a regular basis. For them, being sick is traumatic in ways that have nothing to do with the serious of the illness. It is to be sucked into a corrupt and broken system, soulless and lacking in the most basic human empathy. It is to be made utterly powerless. It is to place one’s fate in the hands of petty bureaucrats and minor Hitlers. And it’s made all the worse when one is uninsured, because this, as we all know by now, is not Canada. It is not the UK, and it is not France. It is not any of the many developed nations that have single payer health care systems. In Canada, I wouldn’t have had to worry about whether I could afford a night of observation in the hospital. I wouldn’t have worried about whether I could afford an echocardiogram.
I later learned that emergency rooms are where many people get their health care, and that Washington Adventist is known as “a poor people’s hospital.” I find this notion despicable. Why does this country, as rich as it is, allow there to be “poor people’s hospitals” and “rich people’s hospitals”? When I listen to the hate-filled rhetoric of congressional Republicans on why we need to leave matters like health care to the free market, it makes my blood boil. If there is any place where we need to be protected from the predations of the so-called free market, it is in tending to our heath. Where profit is the underlying motive force, why is it such a surprise that a class system develops underneath the surface of our supposedly egalitarian society?
So this is my story. Far too many others will be able to tell a similar one. The health care reform bill that got passed is a faint and vague echo of what we really needed. It is a major disappointment, and will do little to address the serious problems that stem from the power that the insurance companies wield in this country. It is in fact a free-marketer’s wet dream, no matter what the pundits and flacks tell us. Because it leaves in place a system that makes getting sick a crime and going to a hospital a sentence.