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.
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Freedom is sometimes a scream in the dark, a will to go on, a solitary rage. I needed that in my hospital bed. But a person wanting to be free over the course of a life also needs calm voices, friendly visits, confidence that illness will bring attention and not abandonment. That, too, helped me make it alive into a new year, our year of pandemic. The lessons I sketch here, arising from thoughts and experiences I jotted down in my hospital notebooks, are about how solitude and solidarity work together.
Freedom is about each of us, and yet none of us is free without help. Individual rights require common effort. The Declaration of Independence posits that “all men are created equal,” and closes with the willingness of all of its signatories to defend that principle. A right is something that we are convinced we deserve, but it only becomes real in the world when forced upon the powers that be.
“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.
LESSON 1.
Health care is a human right.
I was in Germany when I got sick. Late at night in Munich on December 3rd, I was admitted to a hospital with abdominal pain, and then released the next morning. In Connecticut on December 15th, I was admitted to the hospital for an appendectomy and released after less than twenty-four hours. In Florida on vacation on December 23rd, 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 27th, 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 took a look at me in the wheelchair, said “What have they done?” in Polish, 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. Although I did not understand this then, I had a massive infection in my liver, which was leaking into my bloodstream. 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 many emergency rooms in six countries, so I 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 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: racism hurt my life chances that night; it hurts others’ life chances every moment of their lives.
In New Haven, as in the rest of the country, emergency departments in the evening are full of older alcoholics and younger people who have been stabbed or shot. Saturday nights in New Haven are tough, for doctors, nurses, staff, and patients. This was a Saturday night. Trying to stop my violent trembling, I pulled the sheets up, and recalled another Saturday night in this same emergency department, a scene that had played out in the next alcove over.
About eight years before, I had come to the emergency room with my pregnant wife after she had cut two fingers badly while slicing bread. She was two weeks from her due date, and less than usually coordinated. I heard the scream, rushed downstairs, tried to staunch the bleeding, and called 911. The ambulance crew was visibly worried about domestic violence. They found us on our knees on the floor of the kitchen, blood everywhere, me holding Marci’s hand above her heart and explaining quietly to our two-year-old son what was happening. Seeing this posture, the paramedics moved very slowly and asked questions in practiced, controlled voices.
In the ambulance with my wife, the paramedics loosened up and said our boy was cute. I waited at home with my son until some friends could come and take him for the night, then joined my wife in the emergency department. We waited several hours for a specialist, apparently because some of the plastic surgeons did not want to brave the emergency room on a Saturday night. Ours was relieved that the fingers were not severed, which is what he had been expecting in the time and place. As we left the building, we realized that my wife had left a scarf wrapped around the corner of her bedframe. I trotted back to get it, only to find a pair of handcuffs on the rail where the scarf had been, attached to the wrist of a man with a more serious knife wound. He had the scarf around his neck. I let it be.