I was in Germany when I got sick. Late at night in Munich on December 3, 2019, I was admitted to a hospital with abdominal pain and then released the next morning. In Connecticut, on December 15, I was admitted to the hospital for an appendectomy and released after less than twenty-four hours. In Florida on vacation, on December 23, I was admitted to the hospital for tingling and numbness in my hands and feet but released the following day. Then I began to feel worse, with a headache and growing fatigue.
On December 27, we decided to return to New Haven. I had not been satisfied with treatment in Florida, and I wanted to be home. But it was my wife, Marci, who had to make the decisions and do the work. On the morning of the twenty-eighth, she packed everything up and got our two kids ready to go. I was a burden. I had to lie down to rest after brushing my teeth and after putting on each article of clothing. Marci arranged for wheelchairs at the airports and got us where we needed to be.
At the Fort Myers airport I sat in a wheelchair with the children on a curb while she returned the rental car. As she remembers the journey, “You were fading from life on the flight.” At the Hartford airport she wheeled me from the plane straight to a friend’s car and then stayed with the kids to wait for the luggage. Our friend had not known what was happening; she looked at me in the wheelchair, said “What have they done?” in Polish, shook her head, and got me into the front seat. I lay down flat as she sped to New Haven, because my head hurt less that way.
I struggled to get admitted to the emergency room in New Haven. I had to use a wheelchair to get from the parking lot to the lobby of the emergency department. Another friend, a doctor, was waiting for me there. When I was admitted to the emergency room at midnight, I used the word malaise to describe my condition to the doctor. My head ached, my hands and feet tingled, I was coughing, and I could barely move. Every so often I was seized by tremors.
Although I did not understand this then, I had a severe infection in my liver, which was leaking into my bloodstream. I had an abscess the size of a baseball in my liver, and the infection had spilled into my blood. I was in a condition known as sepsis; death was close.
The nurses guarding the entrance to the emergency room did not seem to take me seriously, perhaps because I did not complain, perhaps because the friend who advocated for me, though a physician, was a black woman. She had called ahead to say that I needed immediate treatment. That had no effect.
After the better part of an hour sprawled between a wheelchair and a table in the lobby, I finally got into the emergency department. Nothing much happened then, so I reflected on what I had seen as I stumbled from the lobby to an emergency room bed. I have been in emergency rooms in six countries, and have a feel for them. Like most American emergency departments, this one was overflowing, with beds lining the hallways. In Florida six days before, the overcrowding had been even more severe. I felt lucky in New Haven that night to get a small area to myself: not a room, but a sort of alcove separated by a yellow curtain from the dozens of other beds outside.
After a while, the curtain started to bother me. Getting attention in emergency rooms is a matter of figuring out who staff are and catching someone’s eye. I couldn’t see people passing when the curtain was closed, and so it was hard to decipher the uniform colors and the name badges and ask for help. The first doctor who opened the curtain decided that I was tired, or perhaps had the flu, and gave me fluids. My disconcerted doctor friend tried to suggest that my condition was something more serious.
“This is someone who was running races,” she said. “And now he cannot stand up.”
My friend told the resident that this was my second emergency room visit within a few days, so extra attention was warranted. The resident left unconvinced, and with the curtain partway open behind her, I caught a glimpse then of the two nurses who had admitted me and heard what they said as they passed: “Who was she?” “She said she was a doctor.” They were talking about my friend. They laughed. I couldn’t write this down then but did later in the diary I kept while I was in the hospital: racism hurt my life chances that night; it hurts others’ every moment of their lives.
I was tested, slowly, for flu, for this and that, with little result. I had undergone my appendectomy in the same hospital two weeks earlier, but no one in the emergency department seemed inclined to look at my electronic record. I had brought a folder with the printouts and a CD from the Florida hospital, and I had just enough presence of mind to offer it to the doctors. They were not interested. “We do things our own way,” said the resident. The doctors and nurses seemed unable to complete a sentence, let alone think about my case as something with a history.
I could see, or rather hear, why they were distracted.
A drunk beyond the curtain to the right, an older lady from the sound of her voice, kept crying out “Doctor!” or “Nurse!” A second alcoholic, to the left, was a loquacious homeless man. When asked for his belt, he riffed on the idea of the “Belt of Orion,” comparing himself to the hunter and rapist of Greek mythology. Whenever approached by a female doctor or nurse, he said, “You belong to me; don’t try to fight it.” One of the nurses declared that she didn’t belong to anyone.
Two policemen sat just beyond the curtain, observing two wounded young men. With nothing much to do, the cops moved closer together, just in front of my curtain, and loudly talked the night away. I learned how the police department organizes its shifts. I heard stories of drunk driving, abandoned vehicles, domestic assault, and, the favorite theme, rumbles in the open air that the police were powerless to stop. Some of the stories were funny, like the one about the woman who was caught, shovel in hand and dirt on her knees, undoing the gardening work of her neighbor.
The two police officers preferred different topics: the one bureaucracy, the other criminality. The one who liked to talk about crimes used the terms unperson and unpeople. In George Orwell’s novel 1984, an unperson is someone who has been expunged by the state, someone of whom all trace has been erased. It seemed, though, that the policeman had in mind African Americans he regarded as criminals. I wanted to speak to him about that but lacked the strength.
I was fading. After three hours in my alcove, my fever reached 104. My blood pressure crashed: 90/50, 80/40, 75/30, 70/30. I was hanging somewhere in between. Sepsis kills people, and mine was not being treated.
Malaise means weakness and weariness, a sense that nothing works and nothing can be done. Malaise is what we feel when we have a malady. Malaise and malady are good old words, from French and Latin, used in English for hundreds of years; in American Revolutionary times they meant both illness and tyranny. After the Boston Massacre, a letter from prominent Bostonians called for an end to “the National and Collonial Malady.” The Founding Fathers wrote of malaise and malady when discussing their own health and that of the republic they founded.
In America today, malady is physical illness and the political evil that surrounds it. We are ill in a way that costs us freedom, and unfree in a way that costs us health. Our politics are too much about the curse of pain and too little about the blessings of liberty.
When I got sick, freedom was on my mind. As a historian, I had spent twenty years writing about the atrocities of the twentieth century. Recently I have been thinking about how history defends against tyranny in the present and safeguards freedom for the future. The last time I stood before an audience, I was giving a lecture about how America could become a free country. I hurt that evening, but I did my job, and then I went to the hospital. What followed has helped me to think more deeply about freedom, and about America.
When I stood before the lectern in Munich on December 3, I had appendicitis. That condition was overlooked by German doctors. My appendix burst, and my liver became infected. At the time of my appendectomy, the doctors in New Haven had noted a lesion in my liver but had neglected to treat it, or examine it again, or order another test, or even mention it to me. I was discharged from the hospital the day after that surgery, December 16, with too few antibiotics and no information about that second infection. When I was admitted to the hospital in Florida on December 23 with tingling and numbness in my limbs, I had not known to tell the doctors about my liver. Again, I was discharged after a day.
In the emergency room in New Haven on December 29, everyone dismissed the possibility that my condition had to do with my appendix or my recent surgery. It seemed unthinkable to the doctors in New Haven that their colleagues had done something wrong. This sort of clan thinking is an elementary error, the kind we all make under stress.
The doctors in New Haven did think that the doctors in Florida might have made a mistake. As it became clear that I had some kind of bacterial infection, they suspected meningitis arising from a spinal tap performed in Florida. The New Haven doctors therefore performed a second spinal tap but were distracted even as they punctured my back and searched for the spinal fluid. The resident made an obvious mistake, penetrating my spine through the wound of the previous puncture, which is to say at the putative site of infection. The attending physician had to tell her to pull the needle back out.
People are much poorer at almost every task when they are close to a cell phone; both physicians had kept theirs turned on and close by. I was hunched over a bed with my face against a wall; I know that their phones were present because they rang three times during the procedure. The first was the most memorable. After reinserting the long needle in my spine at a second point, the resident jumped in reaction to her ringtone. Bent over the railing of my bed, I did my best not to move.
My body was at the mercy of the doctors’ permanent distraction. My friend had called the surgeon who performed my appendectomy; she did not remember the liver finding and did not, at this or any other time, mention that it was in the record. If the attending physician and the resident in the emergency department hadn’t been distracted, they could have taken a moment to look up the record of my previous surgery themselves, noted the liver problem, and spared me the second spinal tap. If they had been able to talk to me for a moment longer, I could have shown them my Florida record, which indicated elevated liver enzymes, a clue as to what was happening. I had even circled those results on the paper, but I couldn’t get anyone to pay attention to them. If the two doctors had silenced their cell phones before the spinal tap, they could have done what they thought they needed to without shaking a needle in my spine.
Like everything that happened, this wasn’t my bad luck or the doctors’ bad intentions. It is the nature of the system that doctors are harried and make mistakes.
On December 29, after seventeen hours in the emergency room, I had an operation on my liver. Lying on my back in a hospital bed early the next morning, tubes in my arms and chest, I couldn’t ball my fists, but I imagined that I was balling my fists. I couldn’t raise my body from my bed on my forearms, but I had a vision of myself doing so. I was one more patient in one more hospital ward, one more set of failing organs, one more vessel of infected blood. But I didn’t feel that way. I felt like an immobilized, infuriated me.
When I look now at the pages of my hospital journal, stained by saline, alcohol, and blood, I see that the New Haven sections, from the last days of the year, concern the powerful emotions that rescued me when I was near death. The first words I wrote in New Haven were “only rage lonely rage.” I have felt nothing cleaner and more intense than rage amid deathly illness. It came to me in the hospital at night, giving me a torch that ignited amid kinds of darkness I hadn’t before known.
Had I died, my death would have been all too typical, a passing into sad statistics. Far too many Americans have needlessly departed life this year. Far too many Americans are too close to death all the time. Although we have been promised ever-longer lives, life expectancy in our country peaked six years ago, in 2014.
The beginning of life in this country is frightening and uncertain. Care of expectant mothers is wildly uneven and grossly inadequate. Black women often die in childbirth, and so do their babies. The mortality rate of babies borne by African-American women is higher than in seventy other countries. America as a whole does worse than forty countries in infant mortality. Young adulthood has lost its charm. Unless something changes, millennials will live shorter lives while spending more money on health care than Gen-X parents or boomer grandparents. The prime of life is not what it once was. Middle-aged white men are committing suicide and drugging themselves to death in astonishing numbers. Middle-aged white women in the South are dying before their time.
Our system of commercial medicine, dominated by private insurance, regional groups of private hospitals, and other powerful interests, looks more and more like a numbers racket. We would like to think we have health care that incidentally involves some wealth transfer; what we actually have is wealth transfer that incidentally involves some health care. If birth is not safe, and is less safe for some than for others, then something is wrong. If more money is extracted from young adults for health care, but they are less well than older generations, something is wrong. If the people who used to believe in the country are killing themselves, something is wrong. The purpose of medicine is not to squeeze maximum profits from sick bodies during short lives but to enable health and freedom during long ones.
Our malady is particular to America. We die younger than people in twenty-three European countries; we die younger than people in Asia (Japan, South Korea, Hong Kong, Singapore, Israel, and Lebanon); we die younger than people in our own hemisphere (Barbados, Costa Rica, Chile); we die younger than people in other countries with histories of British settlement (Canada, Australia, New Zealand). Other places keep passing us in the longevity charts. In 1980, when I was ten, Americans lived on average about a year less than inhabitants of countries of comparable wealth. By 2020, when I was fifty, the difference in life expectancy had grown to nearly four years. It is not that other countries have more knowledge or better doctors. It is that they have better systems.
The gap between the United States and other countries grew in 2020, since no democracy mishandled the coronavirus pandemic as we have done. People in Japan and Germany, in South Korea and Austria, and indeed in all rich democracies, were at less risk than we were, because their governments treated them better, and because they had better access to information and care. It was already far too easy to die in this country before the novel coronavirus arrived in the United States. Our botching of a pandemic is the latest symptom of our malady, of a politics that deals out pain and death rather than security and health, profit for a few rather than prosperity for the many.
The new coronavirus ought to have been taken seriously from the time of my hospitalization, which is when it was documented. In January 2020, we should have acquired a test for the novel coronavirus, tracked the new disease down, and limited its reach. This could easily have been done. Far poorer countries did it. Americans infected with the coronavirus should all have had access to hospital beds and ventilators, and the doctors and nurses who treated them should have had enough masks and gowns. A virus is not human, but it is a measure of humanity. We have not measured up well. Some two hundred thousand Americans are dead for no reason at all.
Our malady makes pollution deaths, opioid deaths, prison deaths, suicides, newborn deaths, and now mass graves for the elderly all too familiar. Our malady goes deeper than any statistic, deeper even than a pandemic. There are reasons why we are living shorter, unhappier lives. There are reasons why a president thinks he can keep Americans ignorant during a pandemic and exploit our confusion and pain. Our malady leaves us isolated, uncertain where to turn when we hurt.
America is supposed to be about freedom, but illness and fear render us less free. To be free is to become ourselves, to move through the world following our values and desires. Each of us has a right to pursue happiness and to leave a trace. Freedom is impossible when we are too ill to conceive of happiness and too weak to pursue it. It is unattainable when we lack the knowledge we need to make meaningful choices, especially about health.
The word freedom is hypocritical when spoken by the people who create the conditions that leave us sick and powerless. If our federal government and our commercial medicine make us unhealthy, they are making us unfree.
“The whole history of the progress of human liberty,” as Frederick Douglass reminds us, “shows that all concessions yet made to her august claims have been born of earnest struggle.” It will be a struggle to heal our malady. The struggle begins when we claim health care as a human right.
My body was not well cared for during the early hours of December 29. Fluids brought my blood pressure up some, but no meaningful treatment took place. The doctors and nurses could not spend more than a few seconds at a time with me and rarely made eye contact. They ran their blood work, forgot the results, misreported them, ran off. The permanent distraction of doctors and nurses is a symptom of our malady. Each patient has a story, but no one is following the story.
For five hours, from about one to about six in the morning, I had trouble remaining conscious. While I was in this suspended state, the sounds from beyond the curtain never ceased. My brain formed the words uttered by everyone around me, but I was no longer mediating the stimuli. I was not in charge, or there was not enough left of me to be in charge. The policemen’s conversation kept coming through, as did the drunken shouts, the squeak of shoes on the floor, the wheeze of an automatic door, the slap of a hand on the button that opened it, the knock of a bed against it. The curtain to my alcove followed the bodies of people passing by or danced with a draft from beyond.
When I closed my eyes in the early morning hours, I could still see the moving curtain. The rippling became hypnotically regular, from right to left, like an invertebrate sea creature undulating with the waves. The color of the curtain deepened from yellow to ochre. An inky black around the edges replaced the fluorescent white of the lights outside.
Each time I closed my eyes, the rippling ochre curtain beckoned. I tried to keep them open. The blood pressure reading behind me provided a point of focus. Each time I turned back from my vital signs toward the curtain, though, I would eventually have to close my eyes. Then the color of the curtain would change to ochre, its movements would become darkly voluptuous, and I would remember.
My whole life did not rush before my eyes. It was rather that my ability to suppress memories dissolved. A few images of childhood came on heavy, with punching force. I could no longer induce them to make way for other memories or for new thoughts. It was strange to be a spectator of the real, rather than a referee.
The memories of adulthood were less about what befell me and more about what I learned from others. When I concentrate on what I read, I have a very good memory. Much of my thirties and forties I spent reading first-person accounts of the Holocaust and other German crimes, Stalinist mass shootings and famine, ethnic cleansings, and other atrocities. These came now, too, unbidden, a thousand jabs: one after the other, book after book, document after document, photograph after photograph.
Something in me paused over a Jewish orphan taken in by childless Ukrainian peasants: “You will be like a daughter to us,” they said, she remembered, I remembered. Something in me hesitated over the story of a woman whose special gift, as she hid Jews in her apartment, was to behave as if nothing extraordinary were taking place. Poise. Existential poise. A certain photograph I had looked at regularly for twenty-five years appeared before my eyes again: a Polish Jew named Wanda, full of self-possession. Wanda had refused the German command to go to the Warsaw ghetto in 1940 and kept her two boys safe throughout the war. Her husband, their father, was murdered.
It went on, the black and white of remembered words and images, the ochre curtain rippling in the background, neither near nor far, neither on this side nor that. I was with others. At first I was uneasy with the society of the dead, but this passed. I had learned from them. In some way I remembered what they remembered. Wanda’s younger son grew up to become a historian, who approved my dissertation fifty-five years after his mother had saved him from the ghetto. Twenty years after that, I found the record of what his mother had done and wrote about it myself. Life is not just inside people; it passes through people.
It was the ochre curtain I didn’t like; it was the passage into death, repulsive and seductive, that I feared. I never drew it in my diary; I remember it too well.
I was in sepsis for a long time. Britain’s National Health Service recommends that antibiotics be administered to a septic patient no later than one hour after admission to a hospital. My father-in-law, a physician, was trained that the doctor should see to this personally. In my case I had to wait eight hours, until after that surreal second spinal tap. Nine hours after that test’s negative result, the curtain was drawn, and my bed was pulled from the alcove into an operating room. Someone had finally looked at my scans from the time of the appendectomy and noticed the neglected liver problem. A new scan then showed that the abscess in my liver had grown very large during the two weeks it was ignored. After an urgent procedure to drain my liver, I was wheeled to a hospital room, the one where I would spend the last two days of 2019 and the early part of 2020. After my postoperative care was mishandled, I underwent another procedure on my liver, to add two more drains.
I was released weeks later with nine new holes in me: three from the appendectomy, three for liver drains, two from spinal taps, and one in my arm for the tube that channeled the antibiotics I inject. My hands and feet are still tingling, from what my neurologist now believes is nerve damage caused by my immune system when it reacted to an overwhelming threat.
As I write, I am still in treatment: taking medication, undergoing tests, and seeing doctors. For me, writing is part of the treatment. My own malaise has meaning only insofar as it helps me understand our broader malady. I remember places where I should not have been, things that should not have happened, not to me nor to anyone else, and I want to make sense of them.
After I was discharged from the hospital in New Haven, I heard that colleagues were astounded that my wife and I hadn’t called in powerful patrons to protect me when I was in the emergency room. That had not occurred to us. If the system does work that way, it should not. If some Americans have access to health care thanks to wealth or connections, they will feel pleased because they are included and others are not. Such a feeling turns our human concern about health into a silent yet profound inequality that undermines democracy. When everyone has access to decent care at minimal cost, as is true for almost all of the developed world, it is easier to see fellow citizens as equal.
Part of our malady is that there is nothing in our country, not even life and not even death, where we take the proposition that “all men are created equal” seriously. If health care were available to everyone, we would be healthier not only physically but also mentally. Our lives would be less anxious and lonely because we would not be thinking that our survival depended on our relative economic and social position. We would be profoundly more free.
Since health is so elemental to existence, confidence about care is an important part of freedom. If everyone can assume that treatment will be available when necessary, they can turn their minds and their resources to other matters, make freer choices, pursue greater happiness. If, on the other hand, people think that care is preferential, then those who are on the inside start to take pleasure from the suffering of those who are on the outside. If health care is a privilege rather than a right, it demoralizes those who get it and kills those who do not. Everyone is drawn into a sadistic system that comes to seem natural. Rather than pursuing happiness as individuals, we are together creating a collective of pain.
And so our malady concerns us all. We all take part in the collective of pain. Those of us who are doing better are harming those who are less well-off. When health care is competitive the winners do wrong to others, but they also get worse care themselves. Distracted by their relative advantage, they do not see that by harming others they are also harming themselves. If health care were a right, we would all have better access to treatment and would all be liberated from the collective of pain. Health care should be a right, not a privilege, for the sake of our bodies, and for the sake of our souls.
This article is adapted from Our Malady: Lessons in Liberty from a Hospital Diary by Timothy Snyder, published by Crown, an imprint of Penguin Random House, on September 8.