Our Long Marvelous Dying

by Anna DeForest

Genres: Family Life; Literary Fiction

Synopsis

Palliative-care physician and award-winning author Anna DeForest returns with an ode to life and to death, and the ways we care for ourselves and others on our long, marvelous walk toward the end.

In a pandemic-hushed city, a young doctor lives a life of insecure attachments: to a distant partner in an untended marriage, to a loaner child who stirs up hurts from the past, to houseplants wilting in a dark apartment on a once-vibrant street. 

Through a yearlong fellowship caring for the dying and their families, death is impossible to ignore, and still more endings loom at every turn—endings made worse by wounded, avoidant doctors who don’t know how to let go. But after the sudden loss of a long-estranged father, our unnamed narrator’s work is thrown into painful relief, and we see, under threats large and small, how far we will go to hold on to our lives—no matter how little we live them. 
 
Lyrical and with piercing insight, Our Long Marvelous Dying is a meditation on the twin drives of life and death—and how all of us reckon, day by day, with their ecstatic, inevitable collide.

Release date: July 9, 2024

Publisher: Little, Brown and Company

Print pages: 176

Sample

On my first day of work I meet a man with psychic abilities. Like what, I ask him. It is visions mostly, he says. He says in fact he had a vision in the scanner just now. The test is called an MRCP. It uses radio waves and magnets to map the course of the bile ducts. The man has cancer of the pancreas. He is in a bed in a hospital and I am beside him, a little above him, sitting on a window ledge because there are no chairs. Whenever he refers to the test, he calls it by name, as though to show me he knows what is going on. But he gets the letters wrong after the starting M, and the string of letters gets longer and longer every time he says it. I turn him back to the visions. Yes, whenever I start to tell one, my wife will shout at me: No, Henry! She does not want to hear it; she does not want it said. What do you see, I ask him. There is no way to know in advance if the question will come out condescending or ringing with true interest. I can only hope I hit the right note. He looks at me as though he is looking into a camera. Disaster, he tells me, catastrophe. Tell me more about that, I say, but he won’t.

Whenever I notice the faults of others, I make myself imagine, really imagine, to the edge of true belief, that I too have enormous faults that are obvious to others yet completely unknown to me. Of course I don’t really believe it. Enough like anyone, I am sure in my heart that, for unclear reasons, I have a slight moral edge on the rest of the world, that I am more giving and more fair and more kind. Examining this belief—knowing that it is common to most people and so cannot be true for most and so likely is not true of me—somehow does little to change it. In my case, though not always in others’, the belief does seem to force me to improve the way I comport myself, to try to rise to this internal expectation, to be better, to be more generous, to cover up the lie.

Perhaps that is why I am here when I could be paid better to lead a happier life in another, more curative specialty. I am training to be an expert in pain unto death—or quality of life, as we are being trained to call it, burying the lede, elevating the plus side so patients will be willing to talk to us. I set off on this course a long time ago, and I find the reason I give for choosing it changes as I go along. Still, I recite it to myself and others until we believe it. This new world, this death, this broad, waving pandemic death, is not what I thought I signed up for. It has given the work in medicine at times the cast of a punishment. What are you saying, Eli asks when I say things like that. Eli is the man I married. He likes to remind me that cause and effect are neither targeted nor punitive, that the forces of the world have nothing to do with me.

Eli did not want to come back to the city. Some people want to live here only once. Eli hoped for us to move into a life that was less precarious, less expensive, to move away from survival living and how it makes us think only of ourselves. Or am I making that up? All he said at the time was that this life was not his own. And I feel it could go on like this, he said, for some time, for our whole lives, you going and me following along. What do you want? I meant instead. But this was never a question he could answer. Even I did not get to pick where we would end up—it was a match, fellowship, like residency was, a ranked, algorithmic assignment to another year’s work. But I did the ranking. We could not agree on the order, and we took long walks about it and had a few drinks to talk it through, and the talking got heated and did not clear things up. It came to seem that he needed me to want something I did not want. I could never put a finger on exactly what it was. In the end I wrote the list in the order I wanted and submitted it without his consent.

All of the apartments we can afford are grim and lifeless with thin walls and low windows, places that remind me of places I lived when I was poor. In the suburbs we had a mezzanine duplex with a fireplace on the ground floor. I would stand staring at the fire from above with a solid sense of grandeur roaring in my heart. It was a rental, sure, but still that word mezzanine set me far apart from something in life I hoped never to get close to again. Now in the city, we need space for the new suburban aspects of our shared life: a midsize dog, a dozen potted plants, a child. Not ours. At last we find a place in a prewar building along a park at the very northern end of Manhattan, where, because of a lack of developmental interest, there are woods, real woods, hundreds of acres right across the street. This is the forest where the Lenape sold Manhattan for buttons at Shorakapok, the waiting place, now a rock with a plaque where a tree once stood. The apartment is ground floor and dark, the least of many evils.

The plants start to die right away. Someone across the alley in the back runs purple lights night and day to keep whatever he is growing alive. We will not do that, but we have one sunlamp, bright white, twelve hours on and twelve off, that the plants crowd around like lepers at the hem of a preacher. If you dust the leaves like you are supposed to, they fall right off, two down for every one left hanging. Before this, before even the first week is up, there is a flash flood and a tornado warning at the same time, piercing alerts through the cellular phone: SEEK HIGH GROUND AND SHELTER IN A BASEMENT. On a hill and a ground floor, I do neither. I mute the alarms on my phone and sit at the chess set with the child, Sarah, my brother’s daughter, whom he has left with us. Sarah always tries to misuse her pawns, to move sideways, attack backward, although by now I know she knows better. Eli is at work. After Sarah is in bed, I watch the cyclone tear through the tristate area on the TV news. The flood drowns tenants in basement apartments throughout the outer boroughs. Later, in Queens, I meet a woman in her thirties who is dying of lung cancer, living in such a basement with her son, who looks just shy of middle-school age. She speaks only Bengali, but her T-shirt says in English across the chest: TOMORROW IS ONLY A RUMOR.

I am trailed everywhere I go by a supervising attending. When you asked about the visions, she asks, what was the therapeutic intent? To show that I believed him. Though this answer is both untrue and insufficient. On my feedback sheet a few weeks later, hardly anonymous, I read: Interview style is somewhat hard to follow. The first attending is a palliative nephrologist. She is an expert in dying from failure of the kidneys, uremia, a sleepy toxicity we tend to tell patients is no more unpleasant than taking a nap. How would we know that?

No matter his powers, he will not live long, the man with cancer of the pancreas. In the line of work in which I am training, most patients do not. What have they told you, I ask him, about your disease, about what happens next? But he will not look into his own future. I am afraid to, he admits. So I ask him what he hopes for now. This is a question we were trained to ask in an online module for orientation. It seems almost mean. I would not have come up with it on my own. The man has thin arms, a bony chest, wasted temples sunk into his cheekbones. His bedbound state we sum up in two words: poor reserve. Cancer patients’ rate of survival is in inverse proportion to the care they have come to require from others. Health is autonomy. This man cannot walk, cannot lift his hands to eat. I can see into his future: he will suffer a lot, and then he will die. I want only one thing, he tells me, but I already know what it is. He wants to live forever.

We have one year to learn to care for the dying, one year and then the rest of our lives. All of the fellows are doctors, mostly young, fresh from residency, so we are a cohort trained all or mostly in the plague years. I was far enough from the city through the early surge that I did not, say, load bodies into refrigerated trucks, but a lot of the others were right here in the thick of it. They will not tell you what they saw, but they will tell you how they slept at night, or didn’t, mostly drinking strong drinks and watching traumatic documentaries, videos of unwanted dogs scheduled to be euthanized or North Korean escapees recounting the murders of their families. When we start talking like this, reminiscing, we all start laughing at nothing; we laugh until we are short of breath and then for a long time no one says anything.

In orientation, all of the lectures are given online. A summer surge has made conference rooms once again untenable. You come to miss them, the bare walls and empty bookcases, the containment, the pleasant blankness of paneling. Medical libraries do not contain books. The science so quickly rewrites itself. On the screen the squares are crowded with faces, potted plants, trespassing cats. I watch from bed. As a group we are mostly white, mostly women, consistent with the demographics of the field, which is starkly white and has two women physicians for every one man. The gender skew relates to deep human traditions in the work of care, I guess, and the whiteness may be due to palliative care’s proximity to euthanasia. It pays poorly, too, on the spectrum of doctor money, like most caring or preventive fields with few procedures to bill for.

I rescued some books once from a liquidating medical library. Human Diseases in Color, a book of frightening medical photography, and Dictionary of Symbols, which must have been acquired in a time before Thorazine, when Jung was still relevant to the practice of psychiatry. The first few entries are

Abandonment

Ablution

Abracadabra

Abyss

The text beneath abyss is focused on the location of the abyss as it varies by culture: inside of mountains, at the bottoms of seas and lakes, over the horizon, or somewhere out in space. According to this dictionary, the abyss symbolizes not the unknown but the inferior. Abracadabra, it says, comes from the Hebrew, meaning hurl your thunderbolt even unto death.

One of the orientation lectures, after opioid conversions and remedies for constipation, is on talking points, branding, an early introduction to the field’s bad rap. The host is center screen, upbeat, in a statement necklace of large colorful beads. She admits right away: I used to work in pharma, so I know how to spin! The trouble, she says, is all this talk about dying. The public does not want to hear about death. Lead with life, she says, lead with what you have to offer. The cornerstone of her agenda is to demote the most common promotional images for hospice: a sunset viewed through parting clouds; a close-up of two white hands; an old hand atop a younger one, meaningfully clasped. She exclaims, over a slide of such an image: Enough with the hands!

In these early weeks, I am sent on home visits, cataloging homebound strangers’ homes, while some of the cohort are sent to the clinic and some have already started in the hospital. The year is all laid out in advance. We will meet the dying in all of the settings we may later work in: the home, the clinic, the nursing home, the hospital. And we also see people who are not dying or are no nearer to death, as far as they know, than we are but who have curable cancers or chronic illnesses of other kinds and benefit in small and large ways from our wisdom in navigating health-care systems and dosing potent opioids.

Treating pain is the bulk of our work. By the time we are consulted in the hospital, the teams have reached the edge of their comfort—naproxen, acetaminophen, the almost useless pill for scorching nerve pain called gabapentin. We are trained to be comfortable with the stronger stuff: morphine, hydromorphone, fentanyl. We assess the risk that patients will use these drugs incorrectly, recreationally, and we dose them in ways that neither lead to euphoria nor hasten death. We . . .