Two weeks earlier, at the time of my appendectomy, other doctors 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. I had been discharged from the hospital the day after that surgery, December 16th, with too few antibiotics and no information about that second infection. When I was admitted to the hospital in Florida on December 23rd 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 29th, 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 this because their cell phones 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 permanent distraction of doctors. 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 at 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, an important clue 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 the needle in my spine. Like everything that happened, this wasn’t my bad luck. It is the nature of the system that doctors are harried and make mistakes.
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. 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—where I raged and empathized. 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 was to inject. My hands and feet were still tingling, my neurologist now believes from 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, because 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 not only healthier physically but also healthier 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 together create 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.
* * *
In the days between my release from the hospital and the closure of the buildings of my university due to the coronavirus pandemic, I went to my office. I wanted to make a copy of my hospital diary and put it in a safe place.
I looked around at the chaos of years of work and travel, the piles on the tables, the books on the floor: it all seemed a bit strange to me after the months away. I felt compelled to put everything in order. I was too weak to do much else: a few books shelved, a few files sorted, and I had to lie down. As I stepped back from death, I was looking for easy ways to bridge the gap between what I wanted to do and what I could do, and getting my library and my documents in order was one. In moving paper around I also wanted to put memories back in their places. I wanted the ochre curtain out of my mind. I wanted control of what I saw when I closed my eyes.