In the first week of quarantine my dad started wearing his mask and a tree branch nearly fell on our heads, nearly killing us. It was a week before the public parks had to close. We tried to go within six feet of my ailing father, who is so immunocompromised that his doctor instructed him to stop shaking hands with people long before the pandemic.
Two years ago, my dad had to check in to Crystal Spring Home Therapies to have a peritoneal catheter inserted for dialysis. While preparing for the operation, the doctor drew on Dad’s stomach with a marker, showing him where he would cut, and so forth. To lighten the mood, he pinched Dad’s belly fat and said, “Ew, what is that?” Doctors are the one class of people allowed to body shame, because every remark is part of an effort to save your life. Under the cover of the white coat, shame has nothing to do with image. We are willing to listen to the voices, real and imaginary, of a society that tells us what to do about how our bodies look, but less willing to listen to a trained professional taking interest in our vitality.
Until dialysis began, my dad would have to come in once a week to have the catheter flushed. The nurse who checked him had once attended Concord, but when her grandfather found out he had kidney disease, she ended up leaving school to tend to him. After being trained on how to run dialysis, she went to nursing school. Clearly she decided to help kidney patients in honor of her grandfather, because it was convenient to help care for him in the first place, then it became convenient for her career. But I wonder if she also did so to keep her grandfather alive in her work. She is tending to my dad, a surrogate for her own grandfather.
Six separate tubes went into my dad’s abdomen. There is something umbilical about the apparatus, and to see it in the elderly is an unnatural fright, because their body is indeed regressing into the neediness of the child in utero. I can’t help but feel sorry for this towering man reduced to such a state before his son and also before a stranger. His voice sounds pitiful as he recounts the slights his body has brought against him. Men are not meant to become babies again in their old age. Bodily decline isn’t shameful. It’s just that it feels so private, an insult to a man’s sovereignty he would rather not share. And so with age, men are expected to conceal the skeleton beneath. But perhaps he is willing to let me see him like this as a warning: This happens to you with time, so be ready for it.
One minute, he is open about his anxiety.
“I don’t want to be here. I just want to live a normal life.”
The next minute he tucks his vulnerability back into the drawer.
“I’ll be all right. It’s just a bunch of stuff piling on at one time.”
***
A year and a half later, my dad is a recovering kidney recipient taking immunosuppressant drugs in the time of Covid-19. He wears a mask and gloves whenever he goes out—if he goes out. He’s got to work, but he’s got to stay safe. The dance he’s been doing for months now has added new choreography.
This is the new condition.
Said Emerson, “In the nature of the soul is the compensation for the inequalities of condition.” Living for a year without natural kidney function, my dad was a concentration of the human condition, honing on abilities that appeared superhuman in the absence of an ability the rest of us take for granted. He began surrendering to the insights of this new condition with patience, thankfulness, and hope. But it was not without frustration.
For an entire year Dad was on dialysis, having to carry out his own medical procedure at home, following thirty-six steps with monk-like precision, compensating for the inequality of disease. This treatment is fitting for my dad, who above all would rather do it on his own than have an excess of contraptions and people checking on him. The makeshift nature of it can feel like Rambo or Robinson Caruso patching his wounds in the jungle. This experience prepared him for the hassle of living in a pandemic. However cumbersome, stay-at-home orders and medical masks are a walk in the park by comparison.
***
The first dialysis machine ran on the motor of a laundry machine, complete with tin cans and sausage casings as filters. It was the best that Dutch pioneer Dr. Willem Kolff had to work with under the occupation of the Nazi regime’s zealous promotion of “screw you” euthanasia. There were no survivors at first. After ten years of improvement on Kolff’s device, even America’s hospitals resisted it at first. Now there are thousands of machines in America, most of them treating Medicare patients in poverty-stricken parts of town.
Anyone with late stage kidney disease is eligible for Medicare coverage. If they weren’t, only the rich could afford dialysis, and most of the 460,000 Americans who need it would simply die off. Some still do, even now. Some, like many cancer patients, willingly forego treatment and prepare for the end.
When he was first introduced to his condition, Dad went to a meeting at the hospital with others like him who listened to a professional review the coming changes and the resources offered for kidney disease patients. An orientation for the newly afflicted. There were many things a person could seek in order to cope with, afford, or settle more smoothly into life with kidney failure. But mainly one had to go with either permanent dialysis or a transplant.
“What if I don’t want to do any of them?” said a woman. “I’m done.”
Her husband sat beside her, silent. My mom gripped my dad’s arm. Every person had a decision to make.
“I’m not doing it,” insisted the woman. She would not accept taking a kidney or submitting to a strenuous and consuming treatment.
My parents wanted to leap out to her from their chairs and say, “No! No! Don’t give up.” But they didn’t know her story. Suppose she had already fought her battles. Along came cancer, Rheumatoid Arthritis, or Cystic Fibrosis. Or suppose she’d seen enough family members spend years in hospital beds. Even her own children.
The doctor tactfully highlighted the plethora of success stories for those who took initiative in getting treated and finding support.
“I’m ready to die,” said the woman. “Treatment? I can’t do it. If I died right now, I’d be fine.”
My dad went over and spoke with the woman. He told her he respected her decision, and he would pray for her.
“I know there comes a time when a person cannot fight any more,” he told me later. “You just don’t have anything left.”
I can understand wanting to give up. With one option, there is a condition you have to keep up with every day, to such a degree that every day is narrower than all the days before it as you spend hours cleaning your blood mechanically. There are no off days. With the second option, someone else risks their own life span for yours. You will always carry that with you. The third option is to expire on your own terms. No requirements, no debts. Just you and the dust ahead.
Strange thoughts form in the hearts of the terminally ill, alien to the rest of us. Their wishes do not always make sense, and it is hard to parse the wise from the unwise. Sometimes the difference between a reasonable wish and an unbearable command, between a heightened perspective and a dreadful outlook, between passive acceptance and passive suicide, is a thin black curtain.
***
The dance we do with death is no longer a private matter when society is ravaged by communicable disease. My choice to wear a mask is no longer just about me. The common refrain, “I don’t care if I get sick and die,” fails to apply. I—that is, we—never really dance with death alone. Every artist rendering the Danse Macabre depicts not a single person with the skeletal haunt, but a group of people conjoined, often in a ring or all-inclusive panorama. The memento mori of death’s familiar masquerade is as public as it is personal and even survives in the custom of trick-or-treating on Halloween.
If you gaze at the endless portraits of plague from medieval Europe, it seems like a snapshot of an isolated time when death was so widespread and so terrifying that it occupied the thoughts of everyone. How could it not? And yet many of the paintings aren’t even of the bubonic plague, but of smallpox, leprosy, or even famine. It did not take a third of the population dying from a single bad wind to bring death to everyone’s minds. Mortality had always been there. Every fatal affliction brought up the same subject, like birth reminds us of life or aging reminds us of time.
The dance of quarantine has been performed all over the world as well, though the name comes from the 14th century Venetian practice of forcing sailors to remain on the boat for forty days before setting foot on land. Jews and Muslims had been doing it long before mercantile Europe. Drawing from its own knowledge of communicable disease, every culture has drawn its own lines between the cost of living and the risk of dying.
So while history’s illustrations of death have given us the nasty visuals of illness, they mostly show us what it is like to live with death around us. The process of dying and the mystery of afterlife or permanent nothingness are dwarfed by social chaos and the burden of burying all those corpses. The symptoms that captivate our imagination the most are not what happens to us when we get it, but what happens to us as we prevent, treat, suffer, overcome, and live on. Gilles Li Muisis gave us a line of coffin-bearers. Paulus Furst represented the encumbering precaution of wearing a mask. Pieter Bruegel included the stabbing, the looting, the burning.
Horror has to be met with humor. Even Bruegel in his painting, The Triumph of Death, incorporates a skeleton playing the hurdy-gurdy, another playing backgammon. Such grim jokes were forerunners to the pandemic memes all over the internet today. It is as if we could not survive in our houses without scrolling through hours of visual and textual references to our shared fear that we are all going to die; the world is going to end, and that even if none of those things happen to me I still feel that life is very difficult to both carry on and protect at the same time.
The long line of paintings, sketches, frescoes, murals, and tapestries of waltzing skeletons are, like the dead and living characters within them, part of a long chain that celebrates life in the face of death. In every memento mori is the reminder that even while you still live you have to accommodate for the consequence of death. We’re all laughing about it because we’re all a little nervous, not just about dying, but continuing on in calculation against another wave of adjusted living.
***
Said plainly, only Thoreau could say it, “If a man is alive, there is always danger that he may die, though danger must be allowed to be less in proportion as he is dead-and-alive to begin with. A man sits as many risks as he runs.” We dance with death sometimes to feel alive, sometimes to understand death, sometimes because we’ve come to know death so well we would rather save the last dance for our old pale friend. It is not a dance we can sit out.
Dad and I listen to some of the old-time music about starvation, disease, old age and death. The words were either hopeful or forbearing. In a previous century, plague mourners would whip themselves in the back with cries of agony and repentance, as if to delay the wrath of God. Others, and I like to think of them as wiser, painted our bones on the wall gleefully doing the rufty-tufty. We are mistaken now to find the danse macabre morbid or obsessive. A dancing skeleton never dies. The dead are asleep, the living bear their coffins.
My grandfather recites the old refrain:
It’s not the cough that’ll carry you off,
It’s the coffin they’ll carry you off in.
Sickness doesn’t kill us before harassing us while we live. And when we go, it is the living who must find a way to deal. The subject of death is also that of daily life, illnesses we overcome after drudgery and rest, of people burying the dead out of pragmatism because the bodies had to go somewhere and the economy was too upended to pay for a priest and a few able hands. All those dancing skeletons, all those goth kids at the mall, and all those country crooners and blues bawlers are singing of an ache that fills the living.
Meanwhile, we’re all getting antsy holed up in our houses. Very real economic losses are hitting some families harder than the current plague may ever touch them. Not everyone is dancing to the same step, but we dance the danse macabre every day. Whether to wear a mask or a seatbelt, to gather in public or lock the door, join the organ wait list or number your days. And we’ll crowd the social media of our time with fatalistic fandangos. Memes that will outlive us.
Three months into quarantine, my eight-year-old builds a Lego coffin and assembles Lego men around it who perform a “coffin dance”. In the midst of this uncertain pandemic, he finds a way to amuse himself. My son goes about the dance, taking arms with me, the skeletons, and all the other fools who one day will be history. It’s kind of funny, we tell ourselves in protest.
There need not be any pessimism, nor any fear, in the living asking themselves how they will face upheaval. Step lively, for we are all dancing skeletons on borrowed time.
***
Image by Lothar Dieterich from Pixabay
