On a malady - Timothy Snyder in NYRB:
‘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.’
(…)
‘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.’
(…)
‘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.”’
(…)
‘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.’
(…)
‘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.’
(…)
‘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.’
(…)
‘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.’
Read the article here.
Yes, very much so.
But a few notes. ‘It is the nature of the system that doctors are harried and make mistakes.’ And that’s very human also.
Connections are important in every country, but in some countries more openly. In a decent country with a decent health care system, every patient should be treated as if he has connections. In my experience, the German health care system comes close to this.
Bu for example, I remember people in Turkey complaining about severe corruption in their health care system.
Commercial medicine does exist outside the US, but often more regulated.
Better access to treatment is absolutely needed, but are we talking about single-payer health care? I’m in favor of the Canadian system for the US, but we cannot vote for it, it’s not part of the Biden/Harris plan at the moment. It is not clear to me at the moment what their plan regarding health care is. And maybe it’s not important. First let’s defeat you-know-who and then go back to 2012? 2008? 2016?
It’s important, I would say, to accept that the US is a world power and third world country at the same time, sometimes a US hospital will feel eerily like an Uzbek hospital.
How can you be surprised about this after having lived in this county for so many years? That’s a different question. Academia is also a diversion.