“On Raking Up the Dead” by Ben Reed
BLAST, TMR’s online-only prose anthology, features prose too vibrant to be confined between the covers of a print journal. In “On Raking Up the Dead,” a nonfiction finalist in our 2022 Perkoff Prize contest for writing about health and medicine, Ben Reed considers some striking similarities between the plague years in Prussia and public response to COVID-19 in the United States.
On Raking Up the Dead
How the unusual afterlife of a Prussian servant sheds light on social-media comeuppance in the time of COVID-19.
Were it unlawful to speak ill of the dead, it would follow that no histories ought to be wrote.
–Andrew Le Mercier
A Treatise Against Detraction, 1733
In his fascinating 1905 chronicle, A History of the Plague in East Prussia*, German historian Wilhelm Sahm recounts a curious incident during an epidemic that ravaged the Baltic region in the early 1700s. In March 1710, a domestic worker named Barbara Thutin was found criminally responsible for fatally infecting both herself and her employer with plague. Following something akin to contact tracing, the civil and sanitary authorities in Königsberg determined that Thutin had stolen clothing from one of the many houses deserted through exodus or death and that she had taken in a sick relative without her employer’s consent. However, by the time the judiciary handed down its decision, Thutin was already dead and buried. What happened next is astonishing: Barbara Thutin’s body was exhumed from its burial place in the new churchyard, and on the following day, it was hanged, inside its coffin, from a gallows. After being left on display for three days, body and coffin were cut down and burned to ash. Dead or not, there was still a price to be paid, if only symbolically.
By the start of 1710, Prussian state and ecclesiastical authorities were already struggling to mitigate an unprecedented crisis. Central Europe had been wracked by outbreaks of plague since the Black Death in the late 1340s, but this latest epidemic, one of the very last plagues to afflict Europe, was the deadliest wave ever in some parts of Prussia, Estonia, and Lithuania. A consequence of the Great Northern War between the Swedish Empire and the Tsardom of Russia, infection spread across the region as far as Germany and Sweden, killing between one quarter and two thirds of the populace where it struck the hardest. Many died from hunger, as agricultural production was virtually halted. And because the farmlands in the worst-affected areas of Prussia were predominantly owned by the crown, the bottom fell out of the national economy. Attempts to throttle the spread of plague were insufficient or tragically delayed. Despite widespread understanding of the threat of epidemic, early cases were downplayed until the disease had taken root, after which news of the devastation was hyperbolically exaggerated, undermining trust in the state’s authority, particularly in the new sanitary ordinances. The missteps were many, leading to civil unrest. In the autumn of 1709, after the closure of the eastern capital city of Königsberg, the “fiery, irascible Pietist” and professor of theology Heinrich Lysius—later accused of being “a Cartesian and Copernican”—gave a sermon in which he rebuked threats by the authorities to hang citizens who might attempt to break through the plague barrier outside the city, suggesting instead that the people who deserved to be hanged were those who ordered the city to be closed, as they were the ones who had done the most to increase general misfortune. The sermon was later confiscated.
Writing almost two hundred years later, the historian and schoolteacher Wilhelm Sahm wistfully observes, “How should the epidemic be stopped under these circumstances! After all, it may be difficult to absolve the state authorities of individual mistakes, but it would mean misjudging the facts, if one were to unjustly attribute the whole severity of the problem to them.”
The difficulty of contending with early mistakes, disinformation, social disorder, and widespread distrust of government health officials are just the beginning of the similarities between the plague years in Prussia and the public response to coronavirus in the United States today. Sahm writes that unrestricted personal movement and simple carelessness contributed to the early spread of the disease across Prussia. Economic trade tapered off in numerous sectors, leading to high unemployment. The cost of goods spiked. Jews, foreigners, and the homeless were targets of suspicion. City streets were filled with turbulence and mayhem. Robbery and violent crime rose sharply, precipitating the formation of armed night watches. Citizen militias—or Bürgerwache—frequently clashed with police, who in turn were given enhanced latitude to battle mobs and quell riots. Agitators such as Professor Doktor Lysius were censored and punished for giving provocative speeches. Many Prussians sought bizarre folk remedies with no empirically observed history of efficacy, and some attempted to worsen the outbreak by decapitating plague corpses, in the belief that this would strew plague-causing poisons. One government doctor bemoaned the populace’s “foolish resistance” to the sanitary ordinances, and the “mindless defiance” of infected patients who stubbornly refused the prescribed remedies. He complained that the threat of the most common punishment—public lashing with a braided whip—was “not respected at all” and speculated “whether a harsher example should not be made.”
In the spring of 1710, officials in plague-beleaguered Königsberg must have thought that Barbara Thutin, owing partly to her social status as a servant and partly to her being dead, could provide an opportunity to make a sufficiently harsh example. Previously, violators of plague edicts were publicly whipped or put in a stockade, but state warnings that more serious penalties—life imprisonment, or execution—would be handed down were understood to be disingenuous, even by the Berlin Medical Council responsible for issuing them. State authorities and the citizenry were seemingly of the same mind that it would be an injustice to hang an individual just for trying to escape the daily miseries of urban quarantine or find food or do a little commerce, at least not while public morale was already so low. Such callous punishments would cause only more rioting, whereas Barbara Thutin was not only dead; she had done something that had reliably increased one’s chances of being executed for centuries in Prussia: she had contributed to the death of her employer. Her corpse could be hanged and burned, almost as an effigy, with little threat of backlash. Just as astonishing, this gambit seems to have elicited a promising response. Three months later, Prussian state authorities prompted the clergy to read a new edict from the pulpits, announcing, in effect, that Barbara Thutin’s posthumous punishment had been promulgated into law, with notable expansion. In June 1710, church leaders warned parishioners that anyone who died after violating the sanitary ordinances would be considered a suicide and that their body would be exhumed and publicly hanged by the judiciary. The clergy also proclaimed, “The same punishment would also apply to those who died after refusing to take the prescribed medications.”
Today, inflicting physical punishment on a dead body strikes one as both ludicrous and ghastly. In fact, postmortem punishment was commonplace in medieval and premodern Europe, and the castigation of those who died by suicide persisted much longer. Ignominies and abuses were inflicted upon suicide corpses in many parts of Western Europe until the early 1800s in a diverse range of rituals and state-sanctioned practices that all underscored a general repugnance toward the body of a person who had died by their own hand. What was exceptional about Barbara Thutin was not the calculated mistreatment of her remains but the postmortem administrative recategorization of her death by disease as a suicide and the development of this recategorization into policy. Once Thutin had been officially designated responsible for her own death, her remains became available for public humiliation.
In Europe, well into the 1700s, the bodies of those who committed suicide were frequently subjected to public indignity, such as being dragged through the streets or transported in the same cart that carried condemned criminals to the gallows before being left on public display. In England, stakes were sometimes hammered through the hearts of suicide corpses. Typically, across cultures and over centuries, the principal chastisement was the denial of proper burial. Bodies were burned and cast into a river or corpses were exposed and left to be ravaged by animals and the elements. In Ireland, suicide corpses were buried at the seashore. In southern Germany, these bodies were sometimes sent downriver in barrels in a practice called “running” or even used as bait for wolf hunts. Frequently the job of handling the body of a suicide was left to the hangman, the same local figure often tasked with killing rabid dogs, running lepers out of town, and cleaning out cesspits. Willful suicide committed by an outwardly sane person was a crime and a sin, widely understood to be the result of diabolical or supernatural intervention, rendering such bodies untouchable, out of a fear that physical contact might transmit demonic enchantment. As a consequence, the place of final interment was often adjacent to the gallows or in the same potter’s field where executed criminals were buried.
In 1710, faced with the difficult task of reducing criminality and mitigating the spread of disease within an unruly population, the Prussian state needed an opportunity to demonstrate natural authority. This was achieved not simply through the dreadful spectacle of exhuming, hanging, and burning Barbara Thutin’s body, but also by playing on a deeply seated cultural revulsion of suicide and the awful implications of being denied interment in hallowed ground—of being not simply unremembered by one’s own community, but deliberately ostracized from human society, even after death.
In Rituals of Retribution: Capital Punishment in Germany, 1600-1987, Richard J. Evans observes that suicide alone was not traditionally a cause for posthumous execution in medieval or early modern Europe. Despite the litany of degradations and physical insults commonly inflicted upon the corpses of suicides, the hanging or beheading of the dead was generally reserved for criminals who had killed themselves in order to escape capital punishment. Such was the case of Johann Lätsch of Erfurt in 1806, who was condemned to die on the wheel but committed suicide the night before. The local authorities decided to “execute” his corpse, as “the intention of the law is that the sentence shall be carried out on suicides of this kind, as far as is possible, to serve as an example for the deterrence of others.” In 1704, a Vienna newspaper reported on a man who was accused of murdering his wife but who had committed suicide before his sentence could be carried out. His body was dragged to the place of execution, where the executioner beheaded him with an ordinary shovel. In Upper Lusatia in 1647, a domestic worker strangled her employer’s young child before hanging herself, and afterward her body was similarly dragged to the gallows and beheaded by shovel. Perhaps the most famous example of posthumous execution in premodern Western Europe is the Utrecht statesman Gilles van Ledenberg, who was due to stand trial for treasonous activity against the Prince of Orange but preemptively cut his own throat with a bread knife. Like Barbara Thutin, van Ledenberg was later exhumed and hanged in his coffin. Again and again in premodern Europe, the bodies of criminals who attempted to elude justice by taking their own lives were subjected to postmortem or simulated execution, while “regular” suicides were not punished in the same way.
Of course, the public castigation of suicide corpses and the social spectacle of capital punishment are similar in obvious, meaningful ways. Both are elements of social control intended to terrify and shame; both implicitly intend to condemn and deter; and both are ritual performances concerned with the sanctification of the community. However, the capital punishment of criminals who commit suicide carries a specific additional meaning: namely, that the death of a transgressor will not frustrate the community’s entitlement to justice. If a murderer kills himself in the jail to avoid being bludgeoned to death in front of a crowd—well, there would still have to be a bludgeoning because there would still be an expectant crowd. To borrow a phrase, The show must go on.
Given the uncanny similarities between the Prussian epidemic of the early 1700s and the response to COVID-19 in the United States today, it should not be surprising that the practice of postmortem mortification has also been resurrected. This time, the posthumously flogged are social media users who employed their online platforms to stridently downplay the seriousness of coronavirus and to undermine trust in the mRNA vaccines, only to later die from COVID-19. While this reckoning against the transgressive dead involves rhetoric and ridicule, not literal disinterment and physical obliteration, the abuse remains retributive, grounded in a sense of cosmic justice, and very much intended for public consumption.
By midyear of 2021, after vaccines had become widely available, many in the U.S. were well past feeling alarm and frustration at the sizable number of unvaccinated Americans who disputed the deadliness of COVID-19, questioned the safety of the new vaccines, and casually undermined basic mitigation strategies. By September 2021, consternation at this mixture of impudence and fatalism had found an outlet in a mordantly entertaining genre of videos on TikTok. Content creators began making montages of social media posts by individuals who amplified vaccine disinformation and derided mask-wearing before dying—ironically but predictably—from causes secondary to COVID-19.
These TikTok montages follow a fairly rigid template. Act I consists of several screenshots of a social media user’s posts, often citing contrafactual research or promoting dubious COVID-19 remedies such as hydroxychloroquine and veterinary ivermectin. Act II has begun when the user shares that they’ve become infected. The posts then focus on their worsening condition. Act III is typically a single frame announcing the subject’s death, either a screenshot of an obituary or a social media post written in memoriam by a family member. Sometimes TikTok creators superimpose themselves over the montage to editorialize and pontificate, dryly or maliciously. Some accounts provide no narration. When music is present, a staple soundtrack is Heinz Kiessling’s “Blue Blood,” best known as the theme from It’s Always Sunny in Philadelphia. Snark such as this can make the viewer uneasy, as it underscores the medium’s maximal impoliteness and how vigorously these videos breach the ancient social proscription against disparaging the recently deceased. It is not just our bodies that find sanctuary in the tomb.
TikTok creator @…secretlytiktoking has created many solid examples of the genre, such as when she focuses on social media posts made by a Colorado man named Scott Hilliard, whom she describes as an “anti-vaxxer.” In a series of Facebook posts, Hilliard makes statements like, “Take the mask off dumbass democrat,” and “If you get this vaccine your [sic] about a fucking idiot.” Hilliard promises that anyone who tries to forcefully vaccinate him “will die by my hands.” In ACT II, the posts detail Hilliard’s extreme illness: “I’m so dizzy… shit,” “I’m going down hill [sic] fast… my freaking lungs,” “My dear God this covid is kicking my ass,” “My heart feels like it’s going to explode, it hurts to move,” and “Not knowing what lies ahead of me for tonight Is giving me anxiety through the roof.” Then a post announces that an ambulance has been called. Then Hilliard asks for prayers. Act III is Hilliard’s profile picture, in which he is proudly displaying a fish he has just caught in open water. @…secretlytiktoking informs us that Halliard died on November 15, 2021, at the age of forty-two. There is no background music and throughout the video the creator’s tone is flat with occasional notes of wistfulness and melancholy, as if she has been numbed by the never-ending supply of similar stories she has tasked herself with recapitulating.
One of the more prolific and recognizable contributors to several varieties of COVID-related TikTok content is @crazymotherrunner, who shares and explicates public health information and contradicts disinformation. @crazymotherrunner has accrued over a half million followers and over 21 million likes because she is sharp but relatable, winsome even as she scolds. Unlike others, @crazymotherrunner tends to reserve her comeuppance content for public figures, such as South Carolina Republican Party chair Pressley Stutts, who used his Facebook account to voice resistance to lockdowns and what he saw as unwarranted panic in response to COVID-19. In Act II of a montage video made by @crazymotherrunner, Stutts shares updates on his month-long battle with the virus, much of it in the ICU, which ends with Stutts preparing to be ventilated. Viewers learn that Stutts died shortly after. This time Act III is followed by an encore, as @crazymotherrunner adds a coda on cognitive dissonance, displaying a memorial Facebook post by conservative activist and celebrity attorney L. Lin Wood, who theorizes that the pandemic is being used to partisan ends, because “Only republicans are dying of covid.” @crazymotherrunner also made a video of posts by conservative radio host Phil Valentine, who used social media to make false equivalencies about vaccine safety before dying from complications related to COVID-19. @crazymotherrunner’s closing line for that video: “Is it just me, or is there like, a theme here?”
In terms of antipathetic commentary, however, @crazymotherrunner is hardly extreme. In September 2021, Minnesota-based TikTokker @mikeypiv contributed several montage videos to the comeuppance genre, including a TikTok made with screencapped Facebook posts by a man named Doug Pothul, beginning with a post in which Pothul disputes media claims that COVID-19 is widespread by arguing, “I don’t know anybody that has it.” @mikeypiv offers a disdainfully sardonic narration for a series of slides in which Pothul chronicles his infection and symptoms, shares an image of an “Unvaccinated Lives Matter” T-shirt, and looks forward to overcoming the virus so he can enjoy his “natural immunity.” The last image in the montage is a screenshot from an online obituary reporting Pothul’s premature death at fifty-eight. @mikeypiv says, “Well, at least now you know someone who’s had it.”
The online ridicule of outspoken antivaxxers and pandemic deniers who subsequently died from COVID-19 is by no means limited to TikTok. The website sorryantivaxxer.com is a compendium of social-media reportage on the deaths of “anti-vaxxer [activists] who helped spread COVID-19 misinformation on social media.” There is a private Facebook group titled “My new kink is watching antivaxxers die of Covid.” Twitter is frequently a forum for freestyle comeuppance content, such as a January 2022 tweet by comedian Laurie Kilmartin, who shared the link to a Daily Beast article titled, “QAnon Star Who Said Only ‘Idiots’ Get Vax Dies of COVID,” commenting, “Would be great if these people could get deprogrammed instead of infected oh well.” And finally there is a popular subreddit dedicated to bestowing “Herman Cain Awards,” a reference to the Darwin Awards—sarcastic accolades posthumously conferred upon those “who have supposedly contributed to human evolution by selecting themselves out of the gene pool”—as well as one-time presidential candidate Herman Cain, who became one of the first notable right-wing figures to succumb to COVID-19 shortly after downplaying the severity of the disease. (In a bizarre turn, Cain’s Twitter account continued to operate after his death, including a tweet that read, “It looks like the virus is not as deadly as the mainstream media first made it out to be.”)
Almost everywhere that COVID comeuppance media appears online, commenters roundly indict the content-makers for their ghoulishness and toxicity, accusing them of reveling in the deaths of those to whom they feel intellectually and morally superior. Often at least one commenter will invoke the ancient mortuary aphorism, “Don’t speak ill of the dead.” Inevitably, the same question arises: Is content like this a public service, bolstering faith in a new form of vaccine—or is it just schadenfreude? In other words, is humorously highlighting the death of a vocal anti-vaxxer from coronavirus disease an attempt to demonstrate that anti-vaccine rhetoric and “planedemic” conspiracy theories are harmful to the public good, or is content like this no more meaningful than raking up dead dissidents for a few gratifying kicks?
In 2015, psychology researchers at Emory University postulated “a novel tripartite taxonomy” for schadenfreude, or the experience of pleasure or satisfaction at witnessing the failure and suffering of others, which they found is motivated by aggression, rivalry, and a sense of justice. Psychologist C. W. Leach, who was cited by the Emory researchers, connects schadenfreude with gloating and attributes the emotion to social and political polarization. Leach has said, “[It’s] not just taking a little pleasure in somebody’s misfortune […] In many ways, it’s seeing your enemies suffer because of what they believe. That is the sweetest justice, and that’s partly why it’s so satisfying.” Researchers in child psychology at the University of Haifa have suggested that this reflex arises in us as part of our resistance to unfairness and inequality. Schadenfreude isn’t wicked, it follows “the termination of an unequal situation.” The psychologist Norman Feather, who has studied schadenfreude for three decades, has repeatedly argued that the degree to which we enjoy schadenfreude depends on the “perceived deservingness” of the person or group to whom the central misfortune has befallen. For example: If we watch a Dallas Cowboys linebacker get knocked unconscious, we worry for his well-being. But if he gets knocked out two plays after taking a cheap shot at our team’s quarterback, well, that’s practically a morality play.
As robust as the clinical investigation into schadenfreude has been in recent years, the diagnostic terminology retains semantic problems, specifically when it comes to the putative relationship between satisfaction and suffering. It cannot be true that every TikTok user who clicks the little heart icon over a COVID comeuppance video is in fact savoring the real fear, pain, and distress a stranger endured as they approached an undignified and untimely death. More likely, what is most gratifying about these TikToks is how squarely the bad logic and junk science of the TikTok’s Act I are countermanded by the implacable truth of Acts II and III. A cause has met its anticipated effect.
TikTok comeuppance videos confirm the viewer’s assumptions about the world—in this case, that they did the right thing by trusting the science, by depriving themselves of social contact and small errands, by giving Anthony Fauci the benefit of the doubt. They seem to offer unimpeachable proof that we live in an ordered, knowable world of action and reaction. Such a perception of sense and stability in the face of naysayers can lead to faith in reason beyond reason and a level of self-congratulation almost narcotic in how well it satisfies our desire to be right, even as it suppresses our compassion for strangers and their predicaments. It’s also a kind of enchantment, fogging out the reality that vaccine status cannot fairly be correlated to justice or morality, at least not when one’s vaccine status is also correlated to their wealth, race, level of education, and nationality. These TikToks are proof that what ultimately matters to at least some of us, at least some of the time, is belief in a world where people get what they deserve. To reconsider these TikToks as a product of the same drives that once led to the ritualized erasure of the dead is to wonder if we are asking the wrong questions. Maybe it’s not whether this comeuppance content is public service or just schadenfreude. Maybe the schadenfreude is the public service. Maybe what the public wants is not necessarily the good of the public but moral clarity above all else.
When the anti-vaccine proselytizing and COVID denial of the deceased are recontextualized, certain liberal and progressive spaces on the putatively secular, science-loving Internet are ritualistically sanctified, the way medieval villages were once purified with violence after the sudden interruption of a suicide. Here again, it is not the trespasses of the dead in life that comprise the underlying offense, but their death itself. What good is being vindicated in a moral and ideological schism—a schism that calls into question the very epistemological framework of scientific rationalism—if one is denied the ultimate satisfaction: the biologically impossible situation in which an avid COVID-19 denier or anti-vaxxer gets sick and dies from COVID-19, yet also remains attendant and accountable, able to bear witness to their error? What is the common end of empirical and rationalist modes of thinking if not to change hearts by uncovering that which is indisputable? But the dead do not capitulate, and so justice will always feel elusive. And so some of us may find ourselves wending down the path to the graveyard, carrying shovels and rope.
*Title translated from the German Geschichte der Pest in Ostpreußen.
Ben Reed often writes about politeness, medicine, and dystopia. Find him on Twitter: @BenFromAustin. His essays have appeared in Southern Humanities Review, Texas Review, and online at The Millions. His short stories have appeared in Pank, Seattle Review, West Branch, and online at Tin House. Ben teaches literature and creative writing at Texas State University and lives in East Austin. He is currently at work on both an essay collection and a novel.
“Facing It” by Sally Crossley
“Facing It,” a vivid, wise, and moving account of living with Bell’s palsy, was the inaugural nonfiction winner in our annual Perkoff Prize competition for writing about health and medicine. The essay was a first publication for author Sally Crossley and appeared in print in TMR 44:4.
by Sally Crossley
There will be time To prepare a face to meet the faces that you meet;
—T. S. Eliot “The Love Song of J. Alfred Prufrock”
I’m six, seated at the old pine table in the kitchen, but instead of finishing my cereal I’m transfixed, mesmerized by the face caught in the gleaming metal of the two-slice toaster. Morning light streams through the windows on either side, hitting the curve of the toaster’s edges so my cheeks look fat, blurry, but there in the middle, that’s me; it’s true. I smile. Wrinkle my nose. Blink. Scrunch up my nose, my mouth, to make faces—happy, hopeful, sad—all of which annoy my younger sister.
“Mom, she’s looking at herself again,” she calls, so I stop, but then, after a few minutes, when I think no one is watching, I’m back at it.
Then seventeen, eighteen, gazing into the small makeup mirror on my vanity. Pretty? Plain? Ugly? Trace a dark outline along the arc where the eyelashes meet the lids. Rub in eye shadow. Twirl on mascara. Brush a bit of blush along the cheekbones. Smear gloss over the lips. Blot. Blink. Study the reflection again. My eyes too close together, though I’ve had a compliment or two about how, at the outer edges, they lift like a cat’s. But my teeth are too big, my nose really too small.
Catch a glimpse in a department-store mirror. In a window. In a rearview mirror. There I am. That’s me. That’s what I look like.
Until it’s not.
It’s October 1986, a few days before Halloween, at the end of a week when I’ve been busy sewing a clown costume for my four-year-old son. Half blue-and-white stripes, the other half white with blue polka dots, the costume is nearly finished. No mean feat for someone who, ever since home ec, has struggled with each sewing project she has begun, something the machine seemed to feel as I inched the material along the metal plate toward the needle, the thread catching, then snarling around the silver clip covering the bobbin instead of neatly locking each stitch. Yesterday, though, I managed to sew all the pieces together; just the elastic around the cuffs to go. That’s why today, my seven-month-old daughter asleep beside me, merits a few more minutes in bed.
Since my husband and I moved back to Binghamton—my hometown, a place where my husband found a better job and where I could go to grad school—I earned my MA and had our son, then our daughter, but right now I’m unemployed. All week I’ve been fighting a bad cold with a fever, my mouth full of canker sores. I’m trying to will myself back into a dream, just for a few more minutes, when my husband asks, “What’s wrong with your face?”
I open my eyes. He’s standing next to the bed, knotting his tie, studying me.
“What do you mean?”
“Go look at it,” he says.
I desperately want to stay where I am, but he looks worried, so I climb out of bed, imagining a pimple of enormous proportions. Instead, looking in the bathroom mirror, I see the problem: the right side of my mouth, along with my right eye and right cheek, droops, and no matter what expression I attempt, I can’t seem to fix it. I touch my cheeks, my mouth, my nose, all of which are sensitive—I’m pretty sure I have a sinus infection—but otherwise, everything feels normal.
I slide back in next to the baby and close my eyes. With just a little more sleep, I promise myself, I’ll be fine.
At the same time, I send part of my brain in search of an explanation. What would cause my face to droop like this? Have I ever had anything like this happen before?
Unable to sleep—it’s time I was up anyway—I look in the mirror again. The right side of my face still sags.
Usually, the only doctor I visit is for my kids, but I decide the lingering cold and fever justify a call. The fever is down, yes, I tell the nurse, but I’m also having trouble—I laugh a little, embarrassed; it sounds so ridiculous—with my face.
The doctor can see me at two.
Because I don’t want anyone else to see my face, my husband arranges to take a late lunch so he can watch the kids. The minute he walks in the door, I leave. The sooner I reach the doctor’s office, I figure, the sooner he’ll be able to fix this cold, this infection. This face. Usually, I walk; this afternoon, I drive.
He’s old-school, this doctor, his office in the basement of his house. The dark-paneled, half-filled waiting room holds half-a-dozen straight-backed chairs, and I choose one across from an older woman, keeping my hand on the right side of my face to hide it, pushing my cheek up.
But she comments anyway. “Someone’s just been to the dentist,” she smiles.
In the examining room, the doctor runs through the usual: blood pressure, heartbeat, temperature, which is a little over 100. Finally, he studies my face, then presses the skin around the right side of my mouth, my nose, my eye. “Does anything hurt?”
I tell him about the tenderness, about how my mouth is filled with canker sores.
He nods, puts away his stethoscope, then peers inside my mouth and gently feels around inside. “Does this hurt?”
I nod. “A little.”
Afterward, we sit across from each other at his desk while he makes a few notes in my file. Then he looks up and leans back in his chair. “You have a fairly severe case of Bell’s palsy,” he announces before explaining how sometimes the nerve on one side of the face dies, and doctors don’t completely understand why. “You should tape your eye shut at night to protect the eye.”
I’m trying to pay attention, but I’m waiting for the part where he tells me how’s he’s going to fix it.
He closes the file. “It could get better,” he says. “It could not.” He shrugs. “There’s not much to be done but wait and see.”
Even now, thirty-some years later, no one knows what, exactly, causes Bell’s palsy. Today, when I look it up, I see that it’s a virus, like a cold; in fact, it’s often triggered by a cold. Named after Sir Charles Bell, a Scottish surgeon who studied it in the nineteenth century, Bell’s is the same virus that causes cold sores and is related to the one that causes chicken pox, attacking what is known as the seventh cranial nerve, or the facial nerve. Once the nerve becomes swollen or compressed, one side of the face droops, making the afflicted person look like she’s had a stroke. Usually, Bell’s comes on suddenly, first becoming evident when the person tries to eat or drink. Or in the morning, when she first wakes up.
I didn’t learn any of this right away. Didn’t, in fact, research Bell’s at all. Maybe that’s because I contracted it in the 1980s, pre-Internet. And maybe, too, it’s because I was terrified of what I might find out. Instead, I clung to what my doctor had said: “It might get better. Wait and see.” Never mind that he’d also said, “It might not”; I held on to the first part of his sentence, determined to believe my face would someday return to the way it had been. But that could only work, I intuited, if no one talked about it.
Over the next few weeks, though, friends and relatives began sharing stories about people they knew who’d had Bell’s. The woman who lived in the apartment downstairs said her mother had had a bout, triggered by a draft of cold air coming in through a car window. My husband’s boss, my dentist’s brother-in-law, my aunt’s friend. But in every case, after a few weeks or months, the palsy disappeared.
That didn’t seem to be happening with me. One friend, very concerned, urged me to have an MRI, fearing a brain tumor, something I didn’t follow through with because, well, it seemed obvious. If I had a brain tumor, I would know. If other symptoms arose, maybe. But until then? I’d wait.
And I’d try not to see.
The right side of my mouth still sagged, along with my cheek; my right eye still drooped. When I smiled, I looked like those Greek masks of tragedy and comedy smooshed together: grotesque, at least in my eyes. As the days passed, I learned not to glance in a car window to catch my reflection, not to check my face in the mirror above the bathroom sink for any remaining dabs of toothpaste, not to grab a quick look in the mirror next to the door before I headed out. None of that.
By December, I was managing pretty well, I thought, avoiding mirrors, not dwelling on the fact that I had Bell’s. But then at Christmas, my brother-in-law asked if, after saying his traditional grace, we could pray for my face.
That winter, we bought our first house, a beautiful old stucco in need of repair, and as spring came on, our efforts expanded to the garden, where we dragged out broken limbs, took down trees, raked up years’ worth of decaying leaves. Between that and caring for the baby and the four-year-old, I had plenty of distractions. As for my face? I was all right as long as I didn’t look in the mirror. Who would see me anyway? My family. A couple of friends. Other moms at the park or at the preschool where I took my son. And I was gradually learning that if I jumped into a conversation, I could redirect it with a comment or question, and skip past any looks of concern about the disfigured part of my face. All I had to do was mention one of their kids.
Then one day, prompted by my mother, I made an appointment with a physical therapist who demonstrated a series of exercises that, he said, might strengthen the muscles in my face. I left with a couple of papers illustrating them, but I’d seen from his expression that he had some doubts. Going into his office, I’d steeled myself against hope. But on my way home, I decided I’d prove him wrong. I would learn to raise my eyebrow, to lift my right upper lip, to wrinkle my nose. Soon, I would make both sides of my face work together again and be able to smile.
I didn’t tell anyone about my plan, of course, in case it failed, so when a friend, visiting with her daughter for a playdate with my son, asked, “Have you thought about consulting another doctor?” the question threw me.
“Maybe,” I finally responded, reddening. “I need to think about it.”
A few weeks later, my sister asked the same question.
Both times my answer was the same, but I was furious. As with my brother-in-law’s request for a prayer at Christmas, randomly inserted into a conversation when we were talking about other things, the palsy was nothing I’d been thinking about, nothing I wanted to think about. Why bring it up?
Not that I said anything. I never said anything.
Later that spring, I went to a poetry reading at the university, and as I was leaving, I ran into a few former classmates and professors. Though it had been years since I’d been seen any of them and we’d never been close—I’d been a part-time student, married with kids, taking longer than most to earn my degree—they greeted me with warm smiles and bear hugs, anxious, it seemed, to talk to me, which was gratifying, but I couldn’t figure out why. Had we all been more connected than I’d realized?
Driving home, I replayed what had happened: the hugs, the kind words, the smiles, but those had been accompanied by, I suddenly remembered, looks of compassion, which was when it clicked: my face. They’d been offering sympathy for my face.
A prayer, a question, a sympathetic smile. Hardly reprehensible.
But I’d forgotten that while I’d adopted a plan that prevented me from seeing my face, I couldn’t change what other people saw. My friend, my sister, my brother-in-law, whomever I was in conversation with saw one half of my face move while the other half remained slack, inert. I couldn’t alter that. And yet I continued to try.
Looking back, I realize I was behaving like a very young child who, when first learning how to play hide-and-seek, puts her hands in front of her eyes and imagines no one can see her. She is hiding. And even though I had an increasing amount of evidence that my particular method was not working, I also sensed that what I was doing was the only way I, a thirty-one-year-old woman who’d simply had a bad cold, would be able to adjust to my radically altered appearance. That my face might not ever look the way it once had: What did that mean for other people? And what did it mean for me? I didn’t want to think about that.
In the many arguments I had with myself, my reasons for not seeking a second opinion varied. The doctor was a friend of my father’s; that might offend him. More, seeking a second opinion would cost additional money, which was hard to justify since I wasn’t earning any. My kids had wants and needs; they took precedence. Maybe I could no longer whistle and could only produce a lopsided smile, an ineffectual kiss, but, I told myself, I wasn’t in any pain.
What I did instead was equally instinctive. Since I hadn’t reconnected with friends I’d had when I’d lived in Binghamton before, I didn’t bother to now. Why would I want any of them to see my face disfigured like this? So, in addition to the couple of friends I’d made since moving back, I sought out other moms of kids my children’s ages who didn’t know how I’d looked before.
Now, when I reread entries from the journals I kept during those early years of having Bell’s, I find almost no mention of it.
As illnesses go, Bell’s is unusual because usually, little pain is involved. Lupus, MS, polio, now there’s pain for you. But Bell’s? For me, the only pain that occurred was when I encountered strangers and instead of smiling in response—because I still smiled automatically—they looked away. And when I looked in the mirror. Having a severe case of Bell’s is different from going gray or gaining or losing a hundred pounds or having a terrible case of acne, all of which affect how someone sees herself. Those differences come on gradually, and the image reflected in the mirror confirms that this is you.
Having Bell’s is more like being in an unexpected accident: no maiming, of course, but one’s appearance—one’s sense of self—has suddenly changed.
That’s why it’s perplexing for both the person who has Bell’s and for anyone who interacts with her. When I smile, the downward droop of my mouth suggests that I’m unhappy, even angry, because that’s how one half of my face looks. But then there’s the other half. Which is it? Happy? Sad? It’s difficult for someone looking at me to say. It’s instinctive, and far easier, for them to look away.
We marginalized people all know that it’s a fight to see ourselves clearly, to refuse to allow the way others see us to affect us too much and let that become how we see ourselves. For the unattractive or disfigured, there are the adages Beauty is in the eye of the beholder or Beauty is only skin deep or It’s what’s on the inside that counts.
Me? I secretly bought into the story of the ugly duckling. He, after all, is transformed. He turns into a swan.
“Have you thought about a chiropractor?” my grandmother, a former nurse, asked. “I read an article in Reader’s Digest about one who helped a woman with Bell’s palsy. She was completely cured!” It was three years later, and I was still continuing on just as before, but instead of taking offense, perhaps because the suggestion came from her, I latched on to the idea. Alternative medicine was nothing I’d considered, but it had a certain appeal. A miracle cure. Maybe. After flipping through the yellow pages and making a few calls, I found a chiropractor who said he’d worked with Bell’s patients before. Week after week for more than a year, he tried various approaches, but the heart of what he said was this: the paralysis was largely an issue of mind over matter. “Stay centered,” he said. “Seek balance.”
After I gave up on the chiropractor, I went back to convincing myself that as long as my face was at rest, the palsy was no longer noticeable. This bit of denial continued to work for me most of the time, but there was the occasional glitch. At the grocery store, one of the clerks, a friendly guy about my age who walked with a limp, never failed to ask, as I was checking out, “How are you?” His sympathy was palpable, but I chalked it up to what he remembered about the way I’d looked before. I was better now. “Good, good,” I responded, smiling, showing him. “And you?”
On another day, when I was pushing my cart down the baking aisle, there he was again, this time stocking the shelves with boxes of Jell-O. “How’s your eye?” he asked, touching his own.
“Fine,” I responded, and kept going. That was annoying, I thought. What was his problem? The drooping smile, that was the issue, not my eye. At home, I looked in the mirror just to be sure, facing myself head-on. Staring back at me, both eyes looked just the same, as far as I could see. There was nothing wrong with my eye.
Then one spring day, a salesclerk in a dress shop pulled me aside and in a low voice said, “I had it, too.”
I’d been looking through a rack of blouses and had no idea what she was talking about until I saw her face: one side drooped considerably lower than the other. Hers was much worse, I decided, than mine.
“Have you tried electrical stimulation?” she asked.
I nodded. I’d just finished a round, in fact, and had been convinced that finally—finally—my face looked better. I’d even asked a friend, and she’d said yes, she noticed a difference. But maybe I’d believed her because of the pain involved, the physical therapist turning up the dial in session after session, telling me to let her know when it began to hurt, something I put off doing until it became unbearable. No pain, no gain.
“Me, too,” the salesclerk said. “And then right after that, I got it on the other side.”
“I didn’t know that could happen!”
She nodded emphatically. “It happened to me.”
I nodded and quickly left, but the fact remained: she’d had the palsy. Had my friend been lying? And me, I’d been convinced it was better. Why couldn’t I see that it wasn’t?
I remained unemployed for years. I told myself this was because the economy in Binghamton was bad, which was true, but other than filling out applications at libraries, bookstores, publishers, and the local newspaper, I didn’t try all that hard to find a job. Instead, I volunteered at my kids’ school, at the church we attended, for Literacy Volunteers. At least, I told myself, I was contributing to society, and my husband’s salary was good enough that we could get by. Since I wasn’t earning any money, I kept clothes-buying to a minimum; jeans and sneakers were good enough for me. But I kept my weight down, applied a bit of makeup, still following the would-be attractive woman’s rule book so I could have the gratification of a look from somebody. Anybody.
I continued to practice the exercises I’d been given so long ago, but here and there, and always where no one would see. Not my husband, not my kids. Not even me. The best place? When I was alone driving somewhere. At red lights, I repeatedly squeezed my eyes shut, then pursed my lips, wrinkled my nose, strained to lift my right upper lip. I went at the exercises with a vengeance, determined to raise that eyebrow, to puff out both cheeks again and again as I cruised down the highway.
What I didn’t do, though, while doing the exercises, was look in the mirror. And so my thirties disappeared. For the 5 percent or so of Bell’s palsy patients who don’t recover, synkinesis often occurs, which means the nerve regenerates, but it grows back abnormally. For someone who doesn’t have Bell’s, that nerve helps bring the smile from the lips to the eyes; for a person with Bell’s, not only do the lips not turn up, but the abnormally regenerated nerve partially closes the eye whenever the person tries to enunciate or to smile. The medical term for this is ptosis.
I didn’t know this until years after I’d contracted Bell’s. Probably doctors had mentioned it, but it didn’t sink in, I was so studiously trying to ignore it. Not until many years later, after I become a high school English teacher, did I realize there were other problems.
One day, when I was teaching a colleague’s class, a student in the front row whispered something to a friend sitting next to her, then began laughing as, behind her cupped hand, she pointed at me. My face flushed. My right eye was twitching; I could feel it, and though I rubbed the skin below the eye, the twitch persisted.
I was in my fifties by then, and I had seen more than one teacher reduced to tears by something a student had said. Ignore her, I reprimanded myself. Plowing through the embarrassment, I massaged the right side of my face—discreetly, I hoped, willing whatever was going on to stop. I had a class full of students; I was in the middle of a lesson. But as the period drew to a close, I situated myself next to the desk of the one who’d been pointing and quietly told her, “I want you to stay for a few minutes after class.”
“I can’t,” she said, just as the bell rang.
“Just for a few minutes,” I insisted. My cheeks continued to burn, and my heart was beating wildly—I had no idea what I was going to say to her—but I was determined to see this through.
The student grabbed her friend by the wrist as the rest of the class filed out, leaving the two of them alone in the room with me. This girl, no doubt, expected rage or, at the very least, a lecture, which I’d considered. But at the last minute, I decided to try another tactic. As calmly as I could manage, I asked her what she had seen. Because, I told her, I couldn’t see it. “My eye was twitching, right?” I asked. “Anything else?”
Embarrassed, she looked first at her friend, then back at me. “Your mouth,” she touched her own lips, demonstrating. “It goes down.”
I nodded and then briefly explained a little about the palsy. “It doesn’t hurt,” I said. “But I woke up one day—I’d had a cold—and the nerve had died, and there’s nothing I can do about it. I just wanted you to understand.”
She apologized and left, while I, still trying to quiet my heart, knew I’d achieved something, though I couldn’t have said what.
Then came the stuttering. For anybody, this would be a problem, but it’s particularly tough for a literature teacher. Reading aloud passages to my IB juniors from Othello or from Huckleberry Finn, I found myself tripping over words I knew perfectly well: ts and ps, ds at the ends of words, were harder to enunciate, making it impossible to whip off a passage, let alone something like Rude am I in my speech / and little blessed with the soft phrase of peace. And I couldn’t for the life of me figure out why. What had happened? In conversation, friends increasingly had begun asking me to repeat myself, but it wasn’t only articulation that was a problem. The eye had begun sporadically tearing and closing at the same time, usually when I was trying my hardest to enunciate, further complicating any attempts to read aloud, since I needed to see the words on the page. And at night, when I was sleeping? The eye refused to remain shut. When I’d first contracted the palsy, I’d had to Scotch-tape the eye closed, and here I was doing it again.
I was seeing a new doctor now, the one who had first diagnosed my case of Bell’s having since retired, and she suggested that I see a speech pathologist. This young speech pathologist tried everything I’d tried before: more electrical stimulation, more face exercises, along with giving me a list of tongue twisters to practice—Peter Piper and alliterative phrases full of bs and ms—but slowly. In fact, I was to work on speaking slowly in general. Seek balance.
But then she urged me to consider surgery, specifically with a renowned surgeon at Johns Hopkins who specialized in something called a gracilis muscle transfer, where the doctor moves a useless muscle from the thigh to the face. That would correct problems with my smile and maybe, she hoped, with my speech.
Walking out of her office I considered what she’d said. While I couldn’t ignore the palsy’s effects on my speech and vision, I was afraid to hope too much. What if she were wrong? Yet she’d done the research. I had no more excuses. It was time.
A month later, I drove to Baltimore. I was the only patient in the waiting room, and a nurse handed me a survey to complete. How had Bell’s affected my mental health, my sexuality, my relationships: Seriously? Somewhat? Not at all? I read through the questions and then returned to the first one: my mental health. Years earlier, I’d come across a blog for people with Bell’s. A woman had written that her husband had left her because he told her he couldn’t stand to look at her anymore. That would be seriously. On the other hand, not at all wasn’t true, not if I was being honest.
I recalled the short story I’d read shortly after I had contracted Bell’s. It was about a woman who lost her face. She looks in the mirror for her reflection, and nothing looks back. Very Kafkaesque, but the story resonated especially for me because when I looked in the mirror, a face looked back, but it wasn’t mine. A little theater of the absurd, this whole thing.
So I checked somewhat, marking that answer for all the questions, and pretended to read a magazine while surreptitiously studying the faces of the people who had since come in. Just women, none of whom seemed to be disfigured. Were their issues simply cosmetic? Dissatisfaction with a nose? The lips?
What about me? Wasn’t I being equally self-indulgent, equally vain? Had I thought I was above that? I’d been coloring my hair for years. Growing up, I had been pretty. Not beautiful, not hold-the-horses stunning. Cute. So wasn’t I, at sixty-one, simply trying to look young and attractive again? Those years were gone.
I stood up to leave but at that point reminded myself that I’d taken a sick day and driven five hours after work the previous day to spend the night in a motel. I was here, after all. Before I could change my mind again, the doctor, appeared. Within a few minutes, this charming, clearly knowledgeable guy allayed every concern. He said he knew all about Bell’s and its long-term effects with the eye and the speech, and then he suggested a couple of things: Botox, to start with, then adding a weight to my eyelid, since, he noted, the fact that my right eye didn’t always close when I blinked was drying out the cornea.
Whether because of the drive or the fact that this hospital and the doctor were of a much higher caliber than anything I’d encountered before, I followed his suggestions. I had the Botox, which made my smile more symmetrical, but I’d have to keep up with the injections if I wanted that to continue. A few months later, I had the weight put in, which helped, though it wasn’t perfect.
The following winter, I switched to another doctor, this one equally talented, but in Boston, which was an easier trip since I knew the city and had relatives I could stay with. Her office was different. Nine floors up, the reception area was spacious, with a wall of windows offering a stunning view of the Charles, filling the room with light. Around the room sat other patients from who knew how far away, all of whom suffered from various kinds of facial nerve damage. Most, when I looked at them, refused to meet my gaze. These were my people.
A little girl in red-and-black leggings, a Swedish-looking design, came in with her mother. The child looked unhappy, but maybe the appearance of unhappiness was simply because one side of her face, like mine, drooped.
Then a guy about my age walked in, stopping at the receptionist’s desk to announce, “I’m here to get my smile back.” Heavyset, wearing a brown winter coat on this unusually cool day in May, he told her he had decided to have the two-part operation. “People don’t like it when you don’t smile,” he said.
The receptionist, a pretty, engaging young woman, smiled and said, “That’s not true.”
“Yes, it is,” he said congenially. “You know when people look at you, they want you to smile.”
“Let me see you smile,” she said.
He obliged, giving her a lopsided grin.
“There you go. You can smile,” she said enthusiastically.
“Yeah, but not like before. I’m on disability, so,” he said, and looked around, “you can schedule it anytime.”
It’s no small thing, the ability to smile. People take it for granted, offering a smile to someone sharing an elevator, to a passerby on the street, to a waiter in a restaurant, but a smile, apart from being an acknowledgment of someone else’s existence, also anticipates one in return. An exchange of smiles establishes a connection, maybe even trust. When this man tried to smile, I saw it: his face became that Greek mask, comedy and tragedy smooshed together. Try to read it and you’d err on the side of tragedy. Who was going to smile back at that?
The receptionist, a sweet young woman with whom I’d had several conversations on the phone, who’d greeted me by name when I’d walked in even though she’d never seen me before, had lied. The man could not smile, and he had rightly corrected her. He knew. Probably in her eyes, the lie was perfectly justified, told in order to not hurt him or any other patients who were listening. But for me, this distortion of the truth felt like a return to all the years of denial I was trying to put behind me. Because here was the other issue I’d carried with me: trust. Since contracting Bell’s, I had struggled to trust anyone.
Near the beginning of the play Julius Caesar, Cassius tells Brutus, “And since you know you cannot see yourself / as well as by reflection, I, your glass / will modestly discover you to yourself.” Like it or not, people are our mirrors. They respond to how we look, and that can’t help but affect how we see ourselves.
Each time I ask the people who love me whether my face looks better than it did when I was first afflicted with the palsy, they say, “I don’t even notice it anymore.” Since, for years, I rarely looked in the mirror, or when I did, I was able to convince myself that my face looked better than it did, who am I to judge? I used denial to protect me. But doing so became a curse.
For centuries (the palsy has been around for centuries, some art historians even postulating that the Mona Lisa’s half-smile is a result of Bell’s), there was nothing people with this disability could do but live with its effects. Ignoring them is possible, but the fact is, with age, they will get worse—not the palsy itself but the way it affects the face.
Today, four years after my last visit to the speech pathologist, following a mini-facelift, a series of Botox injections, PT appointments, and exercises, I’m still at it. I’ve now had Bell’s for more than half my life, but if continuing with all of this seems excessive, pointless, even, consider the alternative.
Because the palsy left me unable to use one half of my face to speak and to smile, over the years, particularly when I teach, I’ve become much more animated, trying to reassure whomever I’m speaking to that despite my sardonic expression, my words and humor are kindly meant. The downward turn of my lip, which undercuts whatever I say? It’s unintentional. But that can be a hard sell.
And recently, the physical therapist told me that way of compensating was not necessarily good for me. Instead, speaking slowly, training my brain to visualize a symmetrical face, a method known as neuroplasticity, should be my goal. To cultivate a kind of double vision enabling me to see the face as it really is while envisioning that both sides look the same. To see and yet to imagine, both at once. She even suggested that I videotape myself talking so I could isolate the better expressions and practice adopting those. “The affected eye,” as the doctor refers to it, remains slightly smaller than the other, the eyebrow above it, because of the synkinesis, immobile. But if I look head-on in a mirror and don’t smile, I can convince myself that the way I look is basically normal. Photographs, though, say otherwise. They catch the face, hold it still, freezing the disfigured expression.
In a class I sometimes teach on epistemology, I include a TED talk by a neuroscientist named Beau Lotte, who begins his talk with William James’s words: “We see what we see because it is useful to see that way.” Lotte’s focus is color and shape, and in example after example, he shows how our senses prove unreliable. Even though we think we can trust our senses to give us an accurate reading of the world, Lotte shows, that’s not always the case. Because we expect what we see to resemble what we saw before, we respond accordingly, even though what is before us may have changed.
Sometimes I tell myself that if I’d sought out a second opinion or if I had been prescribed antibiotics or steroids immediately, I might not continue to struggle with the palsy’s effects, yet I know there wasn’t— and still isn’t—a “right” path to follow. Some people, even now, who are afflicted with Bell’s, no matter what medicine they’re given, will never completely recover.
The goal, then, changes. These days, it’s primarily to prevent the effects from becoming worse. I now have to add drops to the palsy-affected eye several times a day because it’s red and constantly dry; the lid still does not completely close, so I pull the eyelid down multiple times a day and hold it for one minute, two. I don’t want to have a heavier weight added. I don’t want a doctor to stitch the eyelid partially closed to protect the little vision that eye has left. At night, I still tape the eye shut.
I eat with a napkin in one hand to catch any food or drink that might slide out, which happens, particularly on days when I’m tired and my cheek is more flaccid. It isn’t pretty.
My speech remains a problem, so every day, I practice saying tongue twisters.
I keep up with the Botox, the physical therapy, the face massages and exercises at least twice a day in front of a mirror, and while looking at both the disfigured half and the half that remains unaffected, I imagine both sides reconciled, aligned. I attempt to purse my lips, which works on one side but not so much on the other and half-closes the eye, no matter how much I try to hold it still. Next, I attempt to smile with my lips closed, one half stretched toward the cheek, the other stopping short; the eye, once again, half-closes, and the chin wrinkles, though I’m trying not to let it. And so on, continuing to imagine both sides the same while making sure I see that they’re not.
Not long ago, I moved to a different area, and when I meet new people, if I catch them looking, I slip in the fact that I have Bell’s. Just a sentence or two. A way to connect, to clear the air. We can move on.
When grieving a loss, people are supposed to arrive at acceptance, and maybe, finally, now, at sixty-six, that’s where I am. After years of not allowing anyone to take my picture, I’m eager to be included. Pictures, after all, are records capturing aspects of who we are at different times in our lives. But except for the occasional photo taken at my children’s graduations, my daughter’s wedding, I’m missing. My choice. I didn’t want to see. Recently, though, I discovered that if I part my lips slightly and open my eyes wide, the camera freezes that expression into a look that is less disfigured, more acceptable. Instead of a smile, surprise.
It’s a trick, but it allows me to see, to accept the face in the picture, in the mirror, in the toaster, in the department-store window, to confront both the disfigured half and the other, the two joined together in a kind of broken symmetry: that’s me.
“In 2018, I was sitting at the same pine table I mention in the opening of this piece. It was no longer the place where my family and I ate our meals but my desk. I wrote the line, “About two years ago I decided to do something about my face.” My original title? ‘Look Away.’
“In draft after draft, I kept the title and the line, liking the directness, the faintly humorous edge, the self-mockery—as if I could do anything about it! But as I continued to reshape this essay, I realized that more than making it a therapeutic exercise for me, I hoped to reach both those who have little or no knowledge of Bell’s and those who are similarly afflicted. To do that, I needed to focus on the difficulty and the necessity of “facing it”: looking head-on at this virus that so dramatically impacted my life and its aftereffects.”
Sally Crossley earned her MA in creative writing from Binghamton University after living in that city for most of her life. She also worked in bookstores and taught English in a public high school before retiring to a small town outside Portland, Maine, to write short stories and, more recently, essays. This is her first published piece.
“Snake Oil” by Suzanne Hodsden
BLAST, TMR’s online-only prose anthology, features fiction and nonfiction too lively to be confined between the covers of a print journal. Suzanne Hodsden’s 2021 Perkoff Prize runner-up story “Snake Oil” features a family grappling with AIDS in the 1990s and a woman’s creative but desperate attempts at alternative healing.
By Suzanne Hodsden
In the summer of 1991, Grandpa Jack dedicated his life to providing his youngest daughter with whatever she wanted, no matter what kind of inconvenience, discomfort, or even fear it might cause the rest of us. When Aunt Angie decided she wanted to see some snakes, he made sure we all had to see them, even if we had to make a seven-hour trip from Denver to Albuquerque. Mom’s crappy Nissan made the drive, creaking under the weight of five humans, Grandpa’s oxygen, and a dog—all to visit the International Museum of Rattlesnakes.
Aunt Angie rode beside me in one seat while Grandpa, who was a large man even past his prime, and his oxygen tank took up two seats. Mom’s overweight Pomeranian Blanche was perched on his shoulder like a pirate’s parrot, and I had my head pressed against the window, scheming about how many times I could slap my brother’s face before the adults in the car intervened.
Oscar was three years younger, and at age seven, he hadn’t yet grown into his boxer’s body. He was all hands and feet and scrawny knees. Mom dressed him in a rain poncho and lined the front seat with Hefty bags, anticipating his almost guaranteed motion sickness. Every crinkling of plastic taunted me. His clear display of leg and shoulder room and his access to the AC and radio struck me as a cruel injustice to bear.
Grandpa was busy contending with Blanche, who nosed the window and barked at any birds she saw along the highway. Blanche was fat. Not a couple ounces past chubby, but round like a basketball. Mom said it was because she was sad after losing her lady parts, and Grandpa asked if the sadness was what made her fart too. She had a habit of letting them go every time she barked, swishing them into Grandpa’s face with her plume of a tail.
I witnessed the same cycle several times: Grandpa would swat her to his lap, hand him to Angie or to me or Oscar. Every time, she’d struggle free and roll her body back to her original perch.
“Just tell her no,” Mom said.
“She doesn’t understand the meaning of the word,” he said, fiddling with the oxygen tubes in his nose.
“I admire her tenacity,” Mom said, and this made Oscar and me laugh like loons.
Grandpa had been in the army and fought in the war in Vietnam. He talked a lot about tenacity whenever we had to do something tiresome. Lawn mowing, dishes, removing dead mice from the basement—it all got filed into the same category. It all built tenacity. He told us we’d thank him when we grew up to be magnificent. Mom had heard the “t” word a lot growing up, and though she didn’t use it on me or Oscar, she still made us do all the same unpleasant chores. I asked her once if I was her servant, and without even looking up at me, she said, “Well, I certainly didn’t have children for the fun of it.”
Aunt Angie spent the majority of the ride asleep against me like a wet blanket, and she felt heavy even though she was a lot lighter than she had been before she’d moved to Las Vegas and gotten sick. She’d always been the pretty sister. In old pictures, she looked like a young Kim Basinger next to Mom’s Natalie from the Facts of Life. Aunt Angie had come back to live with us in Denver not long after Dad died, and even then, she was a pale scaffolding of her former self. Her hair was still blond, and it hung limp around her face because she never bothered to style it.
No one understood HIV or AIDs in the early ’90s, except to know that it killed everyone who got it eventually. Mom had explained to Oscar and me that we had to be careful about germs. The disease Angie had could be managed if folks took care of themselves, Mom said. Magic Johnson had it, we knew, and he looked great. This was the goal we all aimed at, and we washed our hands on the way into the house and wore masks if we had colds. Even Oscar was meticulous and careful. We’d lost our dad young, and death wasn’t something abstract for us.
I once tried to beg off school claiming I thought I had AIDs, and Mom revoked my phone privileges. We couldn’t catch HIV, and it was mean to pretend, she said. I asked her how she knew, and she said she just did. I pressed her further, and she’d finally said, “Because you don’t do what girls do to catch it.”
“How do you know what I do?” I demanded, and she’d just sighed, not having the strength to have the sex and drug talk at that particular moment.
Even so, she didn’t like her sister riding so close to me in the back seat. She kept looking at me with Aunt Angie’s head on my shoulder before turning back to frown at the road.
Around hour six of the drive, the air conditioning went out and the last of my nerves fizzled to nothing. Cracking a window was out of the question because of potential contaminants. Oscar was making chugging sounds like a train with his feet on the front dash, and I lasted through about fifteen minutes of him hollering “CHOO CHOO” before I lunged for him. We started slapping the crap out of each other, causing a brawl that had even Grandpa throwing his own swings. Blanche leaped to the headrest, issuing battle cries and filling the air-locked car with her noxious stench.
Mom swerved to the side of the highway, screaming at us with our full names. Oscar Daniel! Louise Patricia! Dad! The commotion woke Aunt Angie, and she looked up and around, trying to remember where she was.
“Are we there?” she asked.
“No,” we all said at the same time.
She stretched the sleep out of her back, and the alarm on her digital watch (a gift from Grandpa Jack) went off. She dug into her bag for the many bottles of pills she carried with her at all times. A regimen of anti-viral drugs, otherwise known as AZT, let most people with HIV extend their quality of life but came with a host of nasty side effects, including persistent nausea, diarrhea, and fatigue. They also had to be taken on a very strict schedule to remain effective, hence the watch.
Pulling the bottle free, she shook it like maracas and shimmied her boobs like she was still a showgirl. “Cocktail hour,” she announced.
I gave her my Coke from our McDonalds stop, which was mostly brown water, and she thanked me. She asked if she could keep the cup, and when I said yes, she stuffed it down in her huge bag. She never let me drink after her, ever.
“God, why is it so hot in here?” said Angie. “I’m sweating like a whore in a confessional.”
“What’s a whore?” asked my brother.
“You are, Oscar,” I said, and Grandpa grabbed my face, giving me fish lips, and told me to watch my mouth.
“Just be quiet, Oscar,” said Grandpa. “No more train noises either. Hear me?”
Mom steered us back onto the highway, and before the sun went down, I spotted the first sign for Albuquerque.
The closer we got to the city, the more animated Aunt Angie became. The weight loss had made her eyes seem huge, and right then, they seemed like they were going to fall out of her face. She held the hem of her T-shirt and bunched it into her fists. Grandpa rubbed her back to soothe her, saying it wouldn’t be long before she was with the snakes.
“I know. I can feel them,” she said. She shivered and clapped her hands together.
Was she creepy before she moved to Las Vegas? Honestly, I can’t remember, but I don’t think so. She used to give me rides on her back, making up silly songs and singing them. I love you more than ladybugs love the windowsills. I love you like a worm loves dirt. She carried me around in a laundry basket that we pretended was a spaceship. Mom was busy with baby Oscar, who was sick a lot, and I think part of Aunt Angie always pretended I was hers.
Now I pulled away from her, almost frightened of her disease-hollowed body and waning strength. She put her arm around me and pulled me close, and her sweat smelled different from the rest of ours. It was almost sour, but I tried not to flinch. She asked me if I was excited, and I told her no.
“You’re the only one who likes snakes, dude,” I said.
“We’ll see,” she said. She bounced her eyebrows at me.
That night at the motel, Mom cranked up the AC, something she never let us do at home, and we ate pizza on the bed and felt like royalty. I opened up my journal and recorded all the details of the day’s events, including how much Oscar sucked and how much I hated snakes. The entry labeled June 25, 1991, reads: Anything that can climb a tree without feet is not to be trusted.
In the light of day, I was unimpressed with Albuquerque. No city is ever as impressive in person as it is in postcards, in my opinion. Though it was surrounded by mountains, it just seemed brown to me. Brown squat buildings steamed from the heat and a low-hanging sky. In the neighborhoods, locals splashed bright paint on everything to try to distract, but the brown shone through. We sent my dad’s parents in Ohio a card with a hot air balloon on it, even though I never saw one once when we were there.
The outside of the museum was equally unimpressive. It was just a big block building with not a lot of windows. There were no statues of snakes on the lawn, no garden or playground equipment, which were always my marks of a fine museum. I noted in my journal that despite what I’d been led to believe, Albuquerque was lame.
Only Grandpa, Oscar, and I accompanied Aunt Angie into the museum because Mom needed to stay with the dog, a brilliant excuse now that I think back on it. Despite her enthusiasm about a family trip, my aunt abandoned us the second we got through the door, and it was up to Grandpa to squire us through the exhibits while she slipped into a back room on the tail of a long-haired guy with tattoos and an ugly-butt chin.
The first room was all redwood paneling and glass displays of snakes in various fighting stances, head up to strike and fangs (made of rubber, of course) extended. There were buttons on the wall you could press to play different kinds of rattles, and a dark room showing an old projection-style movie on a loop. Grandpa sat us down in front of it and went to find Aunt Angie, and I made myself busy recording all the snake facts that I was sure my aunt would want to know all about when she returned.
- Snakes are deaf.
- Snakes only have one lung.
- Snakes smell with their tongue.
- The rattle on their tails looks like a chewed-down corncob.
- Most people hate snakes. People who love snakes look down on almost everybody.
The movie about snakes freaked me out more than the snakes themselves. Oscar and I wandered into the next room to see a dozen glass terrariums with different species on display. Western diamondback, panamint speckled, tiger, and black-tailed, along with information about how to identify them by head shape and scale color. Every single one of them was rolled into a ball, snoozing like a hairless puppy. They were not poised to strike, and they had their teeth safely folded into their mouths. Their forked tongues tested the air intermittently and seemed the only sign that they were alive. It was almost like speech, and my imagination went to work imagining their hissing voices. Yesss, we sssee you. Now be gone.
Oscar’s first order of business was to march up to the glass and tap on it and press his nose into it, even though there were signs everywhere forbidding people from doing this. I looked around, trying to find some adult in my family that could help me out ; the fear I felt was slowly boiling into anger. I realized in that moment that Aunt Angie hadn’t really wanted us there at all, but she’d needed the ride and the excuse. That made me furious with her, and the anger balled into my stomach like a cornered animal and made my vision start to blur.
“Are these dead?” Oscar asked, unaware of my impending meltdown.
“No, stupid. Look at their tongues.” They weren’t really speaking, I thought. It wasn’t real.
“I think they’re dead, or maybe sleeping. Are they sleeping?”
“Oscar, this place sucks. Let’s go outside.”
I tried to pull at his arm, but all I got was a handful of his Broncos T-shirt as he squirmed away from me. He banged on the glass and yelled at the snake, a tiger ,to wake up. I’m not sure what happened next. How I ended up against the glass, whether Oscar punched at me or I’d fallen. Everyone who saw it says the snake didn’t open its mouth bigger than Oscar’s head. That it didn’t strike at the glass. That this was all in my mind.
The next concrete memory I have is of Grandpa’s hand clamped over my mouth to muffle my screaming. He carried me out of the museum under one arm with his oxygen wheeling behind us. He collapsed into a bench near the entrance, just as Aunt Angie dragged a laughing Oscar out of the building.
Afterward, Mom wanted to know what had happened, and Oscar composed himself long enough to call me a big fat baby. This time, Aunt Angie caught me before I could pound him into the pavement, and she suggested that we all go get tacos. This was when I noticed that there was something large in her purse and that her bag was carefully zipped shut.
My mother pulled me into her arms, and I melted into her soft warmth while she wiped tears away. Still, I was fixated on the bag. Was it my mind again?
I pointed at it, but my aunt caught my eye before I said anything and held her finger over her mouth, shaking her head.
“That was so awesome,” she said. “I can die now. Thanks, everybody.”
She made that joke all the time, and I think she thought it’d break the tension in the room, but it never did, and no one ever laughed. On the ride home, Oscar barfed tacos all over the front seat of the car at 5:52 PM. I made a note of it in my journal.
At my twelfth birthday party, with all my family and friends gathered around my birthday cake shaped like Barbie’s ball gown, a black snake slithered out of my aunt’s blouse sleeve and onto the table. Grandpa and I were the only two people not surprised to see it, and the only two who didn’t start screaming. After spending the previous two months thinking that I was losing my fruit, seeing visual proof of the snakes my aunt had brought home from Albuquerque was a relief.
Most of the party guests ran out of the house, except Mom. who jumped onto a chair clutching Blanche to her chest, screaming “Jesus Christ” over and over again. Grandpa yelled at her, but she insisted that it wasn’t blasphemy if you were begging for help.
Of course, I’d known about the snakes. I’d felt the bulk of her bag against my leg on the ride back to Denver. I’d seen her sneak things into her room: extension cords and Dad’s old aquarium. She’d started wearing blouses that buttoned at the wrist. All of these things added up to only one conclusion, but I hadn’t said anything to anyone. Not even to Grandpa.
Mom and Aunt Angie had started to get along better after our road trip, and my aunt looked and felt much better than she had in months. They laughed over old jokes that only they understood, and I knew that uncovering the secret would bring that entire happy time to an end. Did I like the fact that I shared a house with snakes? Of course not, but as I’d recorded in my diary, Aunt Angie would keep them safely away from everyone if she knew what was good for her. To her credit, she did manage to keep them under close wraps for a long time, considering that she was letting them ride in her brassiere right under our noses.
They weren’t rattlesnakes, which was a great relief to me. They were king snakes, she said. She’d bought them off the tattooed guy she’d met at the museum, who specially bred them for medicinal purposes. She’d gotten a tip from a young guy, who also had HIV, who went to the same disease specialist she did. There was something about the movement along major blood pathways or something. I don’t remember much about the details, mostly because I was trying now to piece together their purpose between my mother’s high-pitched, percussive shrieks.
“How many you got?” asked Grandpa.
“Oh, for the love of God, there is more than one?” said my mother.
In total, there were eight snakes of various varieties living in Aunt Angie’s room, and she swore that none of them were venomous, and they’d never bitten her.
“Don’t you think I’d have found out by now if they were?” she said, but even I could have told her that Mom was in no mood for jokes or even rational argument. About an hour later, everyone was gone, and Blanche was standing in the middle of the table eating my cake, undisturbed. Aunt Angie had bowed out of the fight, and it was down to Mom and Grandpa using the Bible to argue about what to do with Aunt Angie’s new medicine.
Mom referenced creation stories and the snake that tempted Eve into original sin. Grandpa pointed to Moses and his staff with a bronze snake that healed the sick and infirm when the Jews were wandering the desert. They flung verses at each other until Mom played her final card.
“St. Patrick!” she cried. “If snakes are all great and gravy, why did St. Patrick drive them out of Ireland?”
“We Irish have never known what was good for us,” he said.
In the end, it was decided that Aunt Angie would sleep in a tent in the yard if she was to keep her snakes with her. She could come into the house to shower and use the toilet, but the snakes were not welcome to join her.
I helped Grandpa put up the tent under the sycamore tree that we hoped would protect her from harsher winds. It was a good tent, made of thick green canvas with metal zippers, and he said it should keep out most of the weather. The air had already turned crisp, and most of the leaves had fallen from the trees. I asked him what would happen in the winter when it started to snow, and he told me, “That’s a different horse in another race.”
After we’d secured the last spike and Grandpa seemed satisfied with our job, I asked him if he loved Aunt Angie more than he loved my mother. If he was shocked or upset by the question, he didn’t show it. He stood up and brushed his hands free of grass and clumps of earth. He adjusted the oxygen in his nose, and he thought over my question.
“I suppose I do,” he said.
“Is it because she’s so much prettier?”
He took me by my shoulders and told me to stand straight and listen up. I always knew he was dead serious when he said that, so I did as I was told.
“Love isn’t something that you give out based on merit. It’s not a medal, Louise. You give it based on who needs it the most. Nothing else. Understand?”
I nodded my head.
After the first frost, I went into the yard to take blankets to Aunt Angie. I knocked on the canvas and stepped back so she could unzip the doors. There was a snake wriggling in her sweater, and some of the others were tangled in her hair and made it look alive. She thanked me for the blankets and invited me to come in, but I stood rooted to the ground outside.
“I don’t want to touch them,” I murmured.
“You don’t have to,” she said.
Her eyes were luminous black pearls in the semidarkness as she shifted back to make room for me. I climbed into the tent and sat with my legs tucked up under me and my hands pulled into my sleeves. I tried not to think about what was crawling through her hair. They had grown and shed their skin, and it was littered through the tent like dry leaves.
She told me stories about snakes in ancient Greece. How they used to roam free in hospitals among the sick. She told me about the rod of Asclepius, of Hermes’s caduceus. She told me about Indian cobra cures and the Chinese who cured coal-dust headaches with the venom of a water snake. She told me about Seneca Oil and about fakers with snake oil: big pharmaceutical companies and the big bottles of pills she still administered faithfully every day.
“Pharmakon is the Greek word for poison,” she said. “It’s all poison, and it’s all medicine.”
We sat for several minutes and didn’t say a word, and she finally asked if I’d like to hold one. I didn’t want to. I really didn’t, but I held out my hands anyway and asked her not to tell my mother.
“Don’t be scared,” she said, settling a snake into my hands. “You being scared will make her scared, and that isn’t nice.”
The snake she handed me was one she’d named Hero. When I mustered the nerve, I opened my eyes to look at her. Hero wasn’t pure black like the one who’d come to my birthday party. She was red with intermittent stripes of black and white, which made her look like one of grandpa’s socks.
“She’s pretty,” I said, and Aunt Angie smiled in the dark.
Hero crawled up and around the loose weave of my fingers, up my arm. I felt her slick, cool belly against my bare skin and thought Huh. So that’s how they climb.
On Halloween night that year, Oscar was too sick to go trick-or-treating. I was already in my Lancelot costume, but Oscar’s costume—a troll doll suit—was still lying on his bed untouched. This was how my mother knew something was seriously wrong. Oscar would walk out of the house with his hand missing to get a bag full of candy.
His face was bright red, and when he talked, he didn’t make any sense to her, but I knew what he was saying. He was saying “Hero.” Over and over, he said the name. Aunt Angie snatched him up and searched his body all over for a bite, and the truth of what had happened, or what might have happened dawned on my mother. She lit from within with rage.
“This is the snakes? Tell me now. Has Oscar been in your tent?”
“He must have . . .” Aunt Angie trailed off, helpless.
We were all good about keeping Oscar away from Aunt Angie’s tent when she wasn’t there, and I couldn’t think when he would have managed to get out there. And Hero? I could not imagine Hero biting anyone, and I said so.
“You’ve been to the tent, too?” Mom whirled on me, and I backed away from her. “Goddamn it.”
This time, Grandpa didn’t even try to correct her. Instead, he told Aunt Angie to take Oscar to the car.
“You promised me, Angie,” Mom said, breathless.
Grandpa and I watched them pull away from the house, and I made him promise not to die that night and leave me alone. I must have looked so sad in my tinfoil armor, so he held out his pinkie and swore to stay alive. I fed Blanche while Grandpa made us mac and cheese.
Later, when Mom called, Grandpa took the call to another room and closed the door on me. His face was solemn and stonelike, and it frightened me enough that I didn’t try to follow him. This was my grandfather as a soldier, something I’d very rarely seen, even when he was lecturing me or giving me hell for my language or for hurting Oscar. Twenty years fell off him that night, and I saw the man who’d survived in the jungles.
He collected gloves and garden shears from the garage and made his way to the tent. The shears were rusty from disuse, and they creaked as he set about his work. Snip. Snip. Snip. Eight Snips.
I walked to the kitchen table and opened my journal to the page of snake facts and recorded one last entry. Snakes make absolutely no noise when they die.
When I woke in the morning, Mom and Oscar were home, but Aunt Angie was gone. The tent was gone, and the pieces of snake were missing from the trash can. Wherever she went, she took them with her. Grandpa paced the kitchen asking where she would go and where she’d take her dead animals.
“Where do you bury snakes?” Mom asked, but no one knew.
We didn’t know at that moment that we’d never see her again. We didn’t know that she’d hitched to Wichita or that she would find a boyfriend. She escaped the mountains and died out on the great plains in a hospital surrounded by friends and was buried in a grave they bought for her. They never contacted us until after she’d died. She’d started to contact us many times, her boyfriend said, but she always held back. It was years before we knew any of it.
Instead, we rode around for hours looking for a snake funeral. Mom drove until the gas tank of the Nissan got so low, she worried we’d run out. She pulled to the side of the road, left us all in the car in our winter wear, and jumped out into the falling snow. She called Angie’s name over and over, and it sounded like a howl. Like a dog that’s sick. An ambulance or a tornado warning. Her voice cracked like ice and gave out.
The snow in the air thickened and erased the skyline and anyone standing in it. Then we saw her, lit up by the headlights and blinkers. She was walking back.
Grandpa took the oxygen out of his nose and leaned back. After a deep breath, he opened the door and stepped out into the light. Mom’s hands were clutched at the back of her neck and her face was tilted into the falling ice. Her breaths came fast, bursting like white smoke signals. She and Grandpa talked a long time, but neither Oscar nor I could hear what they were saying.
Oscar started to whimper in the front seat, so I leaned up and rubbed circles into his back the way I’d seen Grandpa do. I told him about all the tenacity we were building up. I held out my arm and flexed my muscles and presented them to Oscar for his inspection.
He reached out and squeezed, a slow smile on his face and he felt his own for confirmation of his budding strength. For a moment or two, he forgot that it was dark. He didn’t notice that snow had covered the windshield entirely, and we couldn’t see them at all.
Suzanne Hodsden’s work has been a finalist for the Jack Dyer Fiction Award, longlisted for the Disquiet Literary Prize, and anthologized by the University of Glasglow in A Practical Guide to the Resurrected: 21 Stories of Science Fiction and Medicine. Publications include Crab Orchard Review, Exile, and other journals. She is an MFA graduate of BGSU, where she was a Divine Fellow. Currently, she lives in Ohio, where she is working on a novel of historical fiction.
“One Hundred Days” by Andrea Eberly
BLAST, TMR’s online-only prose anthology, features fiction and nonfiction too lively to be confined between the covers of a print journal. In her 2021 Perkoff Prize finalist story “One Hundred Days,” Andrea Eberly gives us an oncologist and new mother whose past rock-star crush comes crashing into her present professional life in the form of a dying patient.
One Hundred Days
Earlier in my career as an assistant professor of medicine, I would lose myself in charting, reading, writing. I’d imagined myself all mind, just a big brain hitching a ride in a body-machine that I kept running with protein bars, premade cafeteria sandwiches, cup noodles, all washed down with cup after cup of coffee. Now my mammal-body called me back every few hours as my breasts filled with milk, two biological hourglasses that got flipped over after twenty minutes of pumping.
Wichita wichita. The breast pump’s cicada-like chorus filled the clinic’s break room. Today was Thursday, my clinic day. Since I was working as the attending physician at the hospital this month, I spent the rest of the week I was at my research lab. I willed my oxytocin-fogged head to be up to the task of skimming over two years’ worth of chart notes during a single pumping session. I stuffed salmon salad into my mouth while flipping through the electronic chart on my laptop, reviewing chemo regimens, cell counts, CT-scan images. A couple of quinoa kernels fell onto the keyboard, and I brushed them off. I was now responsible for nourishing two bodies, so I’d given up the cup noodles. This next case was new to me; he was coming in for a pretransplant workup.
Wichita wichita wichita. Drip, drip, drip.
When the medical assistant walked in to tell me the patient had arrived, I turned around to his voice. He backed out of the room, hands held up in a Hey, don’t shoot sort of gesture. Strangely bodiless, my swollen nipples pulsed with the suction of the machine, sticking out from the cone-shaped flanges strapped onto me with an elasticized corset. Larry was filling in for Sonya. Sonya was used to the pumping.
I unscrewed the bottles and pulled off the bra, losing a few drops of milk on my pants, and wrapped up the gear before chucking it all into the fridge. I rinsed out my mouth with tap water to conceal stank coffee breath before walking into the exam room. I rubbed some alcohol gel onto my hands.
A man sat on the edge of the paper-covered exam table. Slim dark jeans and a nubby sweater covered a slim body. He appeared closer to my age than his calendar age of fifty-one. But that’s how it is with cancer—the puffiness from IV fluids and steroids can make you look unnaturally young, or the disease can eat away at you and turn you old overnight.
I introduced myself, Dr. Sydney Weaver, and he reached out to shake my hand. A tattoo covered his wrist and half the back of his hand. I’d seen the image before. A blue serpent circled his wrist, scaly body looping on itself with the head eating its own tail. I recognized the ouroboros from the album art of The Invisible City. The poster was still up at my parents’ house, in my old bedroom.
Cool tattoo, I thought, very cool. I was about to say so, when I really looked at the prednisone-puffed face and the postchemo hair fuzz. The cleft in his chin cinched it.
It was him. Mr. Polo.
One night in eleventh grade, my friends and I had gone cruising. It was the late ’80s, Phoenix. Tan desert dotted with stuccoed tract houses and green lawns. All the roads at right angles to each other.
Beth, Angela, and I piled into my Ford Escort—stick shift, plastic dash cracked from endless sun, fabric-wrapped visor disintegrating into a swirl of fine powder. We’d just taken the practice SAT and were giddy with having made the first concrete move toward getting into college, which was to say, getting the hell out of Phoenix. I pushed a Mr. Polo tape into the deck, twisted the volume nob, and felt the bass shake the air, even as the warping speakers were all rattle and static. We stopped at Denny’s and ate cheese fries and drank bottomless cherry cokes. Angela smoked some cigarettes she’d stolen from her mother. Menthols. After driving past Jim Delver’s place and launching a couple of eggs at his window, we drove over to the elementary school with the big speed bumps out front. The city had painted HUMP to warn drivers to slow down. We chalked in the word KIDS underneath. After midnight, we stationed the car in the parking lot of the Ross Dress for Less where Beth worked. It was next to the Taco Bell with the late-night drive thru. We stuffed ourselves with fifty-nine-cent tacos, witnessed petty drug deals, and ripped jokes about the creepy guy in fifth period who was always drawing pictures of wolves in trench coats. Beth and I bet on which one of us he’d ask out first. Definitely Angela. We laughed our throats raw, and then we laughed more. All the while, Mr. Polo blasted from the cassette deck and we swore to each other that even when we went to college, we’d never lose touch and would be friends forever.
Back then, I just thought Mr. Polo’s music was the best thing I’d ever heard. If anyone had asked me why I loved it, I would’ve said it was because of the way he wove together the beats and sounds, how he pushed and pulled the tempos. What a dumb and technical answer, but I cared a lot about sounding smart back then. Really, I just I loved how it made me feel, how he made me feel, like he had crawled into my skull and made sense of everything. I could listen and think, Yeah, it’s just like that. Just like that.
Not long after Marco’s first appointment, I dug around in some old boxes and found my Mr. Polo CDs. I hadn’t listened to his stuff in years. With my windows down, the volume up, and my baby Maddie in the back seat, I drove around. Maddie goo goo gah gah’d and bounced her feet to the electronic drums, the synthesizer click, and Mr. Polo’s machine-gun lyrics. The baby seemed to like Mr. Polo’s middle work best, before he returned to real drums and guitar shreds. In the delicious anticipation of the next beat, the next musical structure, feelings poured through me that were both familiar and strange.
Of course, in medical school I’d learned about dopamine and the pleasure and reward centers in the brain, so I figured music was like drugs, food, and sex—big fat dopamine hits in the deepest parts of the brain. I once shared this theory with Ben, my best buddy from med school, when we were studying neurotransmission, and he joked that I had a pretty mechanical view of the best parts of being alive.
Ben and I had ended up living together in San Francisco for our internal medicine residencies. We shared a one-bedroom—I paid more rent to get the bedroom and Ben slept on the couch-bed. We often went to the laundromat together, the nicer one a little farther away called the Lost Sock. When we washed clothes, Ben always came up one sock short. He had an old shoe box filled with the singletons taking up valuable real estate on our bookshelf at the apartment. I guess he was an optimist, believing that someday all the socks would be reunited. Me, I used to put all my socks in a mesh bag, so it was impossible to lose one. I believed in planning, not luck.
We’d watch our clothes spin around in the dryer while dreaming out loud about the next stages of our careers. Classic overachievers, both of us planned on doing fellowships following residency. I told Ben I wanted to go into hematology/oncology. Ben said he couldn’t understand why anyone would want to go into oncology, because so many of those patients were not fixable. That was the appeal of infectious disease, he said. Match the drug to the bug and cure the patient.
I told him that I didn’t want to stop just at regular oncology. I would push further. Hematopoietic stem-cell transplantation. Every patient on a research protocol as investigators trialed new combinations of medications, new methods of harvesting cells. The fucking Wild West of medicine. In transplant, the goal wasn’t just a feeble extension of life. It was cure.
I wanted to be a goddam cowboy.
On the days Mr. Polo, whose given name was Marco Schellenbach, was on my schedule, a fluttery feeling filled my chest. I wore mascara and was careful not to leave the house with a white blob of dried spit-up on my blouse, even as I was less careful about fastening up all that blouse’s buttons. My husband would sometimes even tell me I looked nice as I dashed out of the house.
On one of those days, as I waited for Marco to arrive for his appointment, I massaged the kinks out of a grant application that was due the following day. My grad student, technician, and two postdocs didn’t deserve to end up unemployed because I couldn’t get my act together and secure funding. I yawned. My kid’s first teeth were coming in, so I was getting little to no sleep, even by new parent standards. The only thing that kept Maddie from screaming was constant attachment to my breast. All. Night. Long.
Marco came in and sat down in a chair—not the exam bench—next to the office computer and stared at his hands. I started with the results of his last bone marrow biopsy.
“Your leukemia is no longer detectable.”
“So that means I can get the transplant?”
His lips pulled into a smile that gripped my heart as we hashed out some of the other details—which conditioning regimen he’d get, the brother who was a match, the sister who could come out from Waco to shepherd him through recovery.
“Do you have any more questions?”
Marco picked up one of the two photos on my desk. Since I shared the exam room, I always had to remember to take my photos home at the end of the day.
“Your baby is cute. How old is she?”
“That’s Maddie. She’s six months old.”
“Who’s the guy in the other photo? Your brother?”
He was asking about the one with the blonde in a tux standing next to the redheaded bride. A lot of patients send their doctors cards with family photos, and we put them up in our offices. I knew it blurred the lines of patient confidentiality, but I couldn’t help myself and answered Marco’s question knowing the hope that the photo could inspire.
One of my first patients.
“Did he live?”
My fellowship had just started when Jason, the guy in the photo, was diagnosed with acute myelogenous leukemia—same diagnosis as Marco. I remember the spring in my step in those days; I’d been driven by my belief that the initial induction and consolidation treatments would work, and even if they didn’t, there was always another step, another treatment, so many different chemotherapy cocktails. I’d prescribed the clotrimazole troches for his thrush during salvage treatment. I’d optimized his antirejection meds. He survived, grew back his hair, got married, and sent me that wedding announcement—the photo on my desk. He’d been the first patient I ushered through the whole process. The first patient I cured.
Marco nodded and pursed his lips as he looked at the photo. His brow twitched. I wondered if he was imagining himself in a similar photo, hair grown back, muscles rounded out. A future without cancer. A posttreatment world.
What was I thinking, leaving the neck of my blouse undone?
During our appointments, I kept thinking that Marco would eventually mention music, like Hey, last weekend I was messing around on my Roland 808 drum machine . . .
But he never did. It became a bit like when you’ve been talking to someone at a party all night long and realize you don’t know their name. You can’t ask anymore. In this case, I wanted to tell Marco that I loved his work, but it seemed deceptive to not have said anything for so long. Maybe he valued what he’d believed was a certain anonymity in our interactions. I mean, I’d now seen him naked under a backless hospital gown, taken blood, knew his whole medical history. So intimate, and yet.
It became a secret I watered like a houseplant. But not any houseplant. Maybe an orchid, where the pleasure was married to the toil of keeping it alive.
While I waited for Marco to arrive—that patient before him had canceled—I caught up on emails. My grad student almost had enough data to write a paper, but her figures were awful, and I didn’t have the time to really get into it, so I closed the email and opened up Amazon to buy some new clothes for my daughter. No one told me it would be so sad to retire Maddie’s six-month footed pajamas, the ones with the hedgehogs.
Earlier that week, I’d replaced Maddie’s photo with a new one. My husband was holding her, and you could just see his hands. Maddie had two tiny bottom teeth. Marco noticed the new photo immediately when he sat down. He said she looked like me. That was when I asked him about his daughter and immediately felt my face grow three sizes too big, hot and red.
My leukemia patient had never told me about his daughter.
In high school and college, I’d read every article about Mr. Polo in Spin or Rolling Stone or whatever other music rag. My high school binder was covered in a collage of magazine cutouts, and the one taking up the most space was a black-and-white photo of Mr. Polo in sunglasses screaming into a mic. I still had a pair of the same aviators.
“I’m actually a huge fan,” I mumbled and swallowed and drummed my fingers against my leg, and the air in the room was jelly. What would he say?
“My daughter just finished art school,” he said. “Hard to believe she was ever that little.” He motioned toward the photo of Maddie.
“Yeah. It goes by fast,” I said. After a moment, I got my nerve up to meet his eye and asked, “What kind of art does she do?”
“She wants to open a tattoo shop.”
He paused and took a deep breath, almost like he was tired from the talking. He lifted his arm, the one with the ouroboros, and said, “She always liked my tattoos. She likes the idea of living art.”
We went over his lab results before he got onto the exam table. I placed my stethoscope over the jaguar tattoo on his back, and the tip of my finger brushed his ink. My heart skipped into my throat as I listened to his breaths go in and out.
Right after graduating college, my roommates and I took a road trip to a big open-air concert near Jackson Hole. Mr. Polo was the headliner. On the stage, Mr. Polo unbuttoned his starched white shirt. Under the stage lights, his muscles rippled, creating the illusion that the stylized jaguar tattooed on his back was alive.
Masses of sweaty bodies, moving to the beat. The violence, the raw physicality of the crowd, edged on sexy. With disassociation from caring and really letting loose, I was for the tiniest moment living life without my mind—I was just a body swimming in thereness, if there even is such a word—synched up with Mr. Polo and his music.
After the concert, we camped for a few nights off a dirt road that lay in the border region between Yellowstone and Grand Teton Park. One night in the tent, my roommate dug out a piece of paper from her bag and wrote the letters MASH on top. It had been ages since any of us had played that schoolgirl game. Mansion, Apartment, Shack, House. A game to predict our futures. The game foretold that I would end up in an apartment with five kids, working as a movie star and married to Dr. Richards, our lech biochemistry professor, whom we always saw working out at the campus gym in such short shorts I swear you could see his nut sack. My roommate got a mansion and was married to Mr. Polo. Lucky her.
Our campsite was near a stream. From our tent we heard something splashing in the water, and then it would stop before starting up again. Was it bison charging through the water? A massive grizzly bear catching fish? We’d been hitting the hash pipe, and paranoia tickled the napes of our necks. That fall I would be heading off to medical school—my roommate, too. My other roommate had been accepted to a PhD program in chemical engineering. We snort-laughed as we imagined the headline. “Young talent cut short. Eaten by bears.”
I unzipped the tent, and my bare feet felt as though they were floating over the chalky dirt as I padded toward the stream. I parted the willow branches like a curtain just in time to see a cloud of white pelicans landing in an explosion of water. They floated with the current of the creek a stretch before flying upstream to land and float downstream again. Paranoia melted into awe as I stumbled back to the tent.
Safely zipped inside the tent, we listened to the sounds of pelicans taking off and landing in splashes of creek water, and we fell asleep to the rhythm of living things.
As usual after working at the lab, I had to get Maddie from day care. The day care teacher told me Maddie had started to point.
Earlier that day I’d reviewed Marco’s chart to see how he was doing. He was two weeks out from his transplant and still admitted to the hospital. His liver enzymes were through the roof, and he was suffering watery diarrhea—graft versus host disease or maybe side effects from the conditioning regimen. We’d know more when the pathology report came back.
My stomach filled with ash.
I strapped Maddie into her car seat. Mostly I was ignoring the stream of garbling sounds emerging from her mouth, when I jammed my finger into one of the buckles. The fingernail of my left middle finger bent back, and pain seared through my hand. It was all I could do to not yell “Fuck!” to not plow my fist into my thigh. I sucked on the finger to dull the ache and inhaled a couple of times. Maddie’s long toes wriggled, taunting me. Goddammit, her sock was off again. What was it with children’s feet and socks? I leaned over, the waistband of my jeans cutting into my belly fat, and picked up the pink-and-white knit thing. Maddie stuck her thumb in her mouth and gave me the stink eye as I pulled the sock over her foot for the eight hundredth time before cinching the straps of her car seat.
One Thursday in clinic, after Marco had been discharged from the hospital, he talked to me about his garden.
“Sydney, what is your favorite apple?”
“I’ve never thought about it.”
“Well, a few years back I planted a Gravenstein tree. This year it has two apples, so next year it should really start producing. Maybe enough for a pie. Gravensteins make the best pies. My grandma had a big tree in her yard, and she baked with nothing else.”
During another visit he told me about a novel he was trying to complete. He said this in between body-wracking coughs that he tried to cover with trembling hands.
“I’m about halfway through revising it.”
“I didn’t know you wrote.”
“My head is filled with all these people—my characters. It will be weird to say goodbye when I’m done with the book.”
I kept hoping he’d talk to me about the music, especially now that he knew I was a fan. I wanted to learn about his process for writing songs, choosing samples, what it was like to stand on the stage above a sea of dancing bodies.
Somewhere inside these conversations lurked his real question: Will I get be able to get my book done?
Am I going to die?
No, deeper still.
When will I die?
One hundred days after I had birthed my daughter, my mom watched her while Craig and I went to a café for a glass of wine to celebrate having kept our baby alive for this milestone. As we walked home, the clouds cracked open with a fountain of rain. We ran the last blocks back to the house, and something warm happened between my legs. I knew what it was, but still hoped I was wrong.
My body had fallen apart to bring new life into the world.
I wanted control of my bladder back.
I’ve always wanted control.
On day eighty-seven posttransplant, it was confirmed that Marco’s leukemia was back. He didn’t get to one hundred days.
Marco paced in the office. Not the violent lunging steps of a healthy man, not the vigorous movements of that man I’d seen so many years before at that festival in Wyoming, but the nervous shuffle of a sick man. A scared man. I explained that the prognosis for people whose leukemias relapsed within one hundred days of transplant was grim.
“What does that mean, Doctor?”
He usually called me Sydney.
I met his question with silence, and that was when he started to cry.
The lights in our living room were on a timer. They clicked off at ten thirty. So did the heat. I had already put Maddie to bed. and Craig was upstairs playing on his computer. The baby cried, and I didn’t think it could be that she was hungry; she had just eaten. I hollered at Craig to go in and get her back down.
Ghost-like light from my laptop filled the room as I flipped through the PubMed database, sifting the medical literature for any option that could go after Marco’s leukemia. There had to be something there if you looked hard enough.
My breasts filled with milk.
I saved links, skimmed abstracts, printed a couple of articles, made notes. Normally I would have fed Maddie around midnight, but I kept working until the sky lightened and birds chirped outside the window. My breasts felt like they had become bags filled with stones. Finally, Craig came downstairs and asked why I hadn’t ever come to bed. I couldn’t say much more than that I was trying to help a patient. I couldn’t tell Craig I was treating Mr. Polo. You know, HIPAA and all that.
Craig went back upstairs and returned a few minutes later with the baby.
“Syd, Maddie’s hungry.”
He said it like “hawngree.” It was our joke.
I held Maddie to my breast. The flood of milk made her cough, and pain shot through me as she clamped down on my nipple.
She now had four teeth. Two top and two bottom.
Maddie’s swallows made little “kah” sounds. A recent paper outlined how something called a FLT-3 inhibitor could attack the leukemia cells, but the drug was still in clinical trials. Could I procure it for Marco? Sometimes drug companies let you use experimental therapies for what they called “compassionate use.” I had to try. I’d contact the medical science liaison at Novo Nordisk. They’d give me the drug. They had to.
The baby dozed off at my breast. A flutter of guilt rushed through me for ignoring her. I remembered the advice my mother had given me—sleep when the baby sleeps. Don’t fight nature. So I picked up her sleep-limp body and carried her into bed with me. I held her to my chest and breathed in the scent of her hair. My own restlessness seemed so abrupt and harsh next to her sleeping form. Her eyelashes were so long. I had no idea that a baby could have such long eyelashes. Underneath the paper-thin lids, her eyes twitched. What was she dreaming about? What would her dreams be? My body was tired, but my mind resisted sleep, and my thoughts wove in and out and kept coming back to the same place. Physicians were just body mechanics. Why could some bodies be fixed, while others failed? What if I couldn’t patch it up and get it back on the road? A package of bones and tissues and vessels and blood—was that all we were?
How many hours did I spend on the phone or drafting emails to the drug company? But inside Marco, his cancer had a schedule of its own.
There hadn’t been time to work through the regulatory hurdle for the experimental drug, so he’d elected to try another transplant. I told him it was a long shot, that it was off protocol and that there was no way his insurance would cover it. Marco didn’t care that his insurance wouldn’t pay. After all, he’d quipped, what else was a gold album for? I tried to be clear and upfront about the risks, about how we were going into unknown territory, that his body hadn’t recovered from the first transplant. But the truth was I never suggested he shouldn’t do it. Not really.
I wasn’t attending the month he got the second transplant, so it wasn’t as a physician that I visited Marco at the hospital. He had a scarf wrapped around his head. He’d been in the room long enough that his family had decorated. A huge line drawing of Marco holding a toddler girl—I had to assume his daughter—was taped to the bathroom door. I had to blink for a moment to control myself. The image so keenly evoked how it felt to hold your child. Marco said his daughter had drawn it and was planning to have it tattooed on her calf.
“Are you able to eat?” I asked.
“Yeah, when I don’t feel too sick.”
“I brought you some pie. The farmer’s market didn’t have Gravensteins, so I got some other kind the guy recommended.” I pulled a Pyrex out of my bag and put a small piece of pie on a paper plate I’d nabbed from the unit’s nourishment room.
“And don’t worry, Marco, it meets criteria for neutropenic precautions.”
Marco smiled and took a small bite.
“I didn’t expect you’d be so good at baking.”
I wasn’t his doctor today. I also wasn’t his friend; that would be presumptuous. There was some sort of blurry relationship between us. I finally asked if we could talk about the music.
Marco had been in the hospital for over a month when it was once again my month to attend on the inpatient unit. His head glistened, totally bald from the treatment. Yellow complexion and sunken eyes, knobby hands, jutting collarbones. His skin like a loose suit over his frame. Diarrhea came next, neutropenic fever, a rectal tube, blood-pressure support. He was altered and could no longer hold a conversation. And then came the breathing tube.
His body was still there, however tenuously, but where had he gone?
Marco’s daughter came every day to visit and sometimes asked questions during rounds. Sometimes they weren’t really questions.
“Is he going to wake up?”
“Why aren’t the treatments working?”
“Isn’t there anything you can do?”
I was home in bed with my baby and my husband the night Marco coded. I found out the next day that the team had worked on him for over an hour, getting his pulse back a couple times before they called it. I was glad I wasn’t there. I didn’t want my last memory of him to be of his body getting smashed by chest compressions while blood frothed around the breathing tube and his eyes became fixed and dilated. The eyes of the dead aren’t like in the movies. They don’t stay closed when you brush your hands over them. The lids spring back open.
That last conversation, the one we had over pie, I’d literally taken notes as Marco talked about his influences. And it wasn’t just other music, but visual artists and novels too. I did mean to look it all up. But as I sat in my office and held the wrinkled piece of notebook paper trying to figure out why I’d scrawled the half sentence, most people like rubbers, I realized I was already remembering it wrong. The notes were meaningless. Sure, I had asked him some questions, but mostly I’d just gushed about how much his music meant to me and how much fun it had been to dance at his shows. Suddenly, a thousand questions leaped into my brain, things I hadn’t asked him. Would never be able to ask him.
Had it been about me all along?
Marco had been gone for two weeks when I received a letter in my office mailbox. It was from Marco’s daughter. I held the small blue card for several minutes before I had the courage to open it.
Thanks for taking such good care of my father. He said you were a fan, and I know that shouldn’t make a difference, but it did.
Later that week, on a sunny Saturday morning, I decided to take Maddie to the park. I buckled my seatbelt, turned the ignition, and stuck in a Mr. Polo CD. Maddie yelled, and I craned around. Her staccato laugh filled the car, and she wiggled her legs and feet. One of her socks hung from her toes.
At the next red light, I turned back to Maddie. Her foot was now bare. I didn’t pick up the sock. Instead, I pulled off the other one and released her beautiful baby foot. She kicked and giggled as I tickled her feet. I was laughing so hard that I didn’t notice the light had turned green until the car behind me laid on its horn.
I was laughing so hard, I peed.
And now? When I listen to Mr. Polo, it is like drinking a memory, taking a hit of the way it felt to be seventeen, parked outside of Ross and laughing with my best friends, how it felt to lie in a tent listening to pelicans splash, how it felt to sit in the car tickling the feet of my beautiful daughter, always on the jagged edge of the rest of my life.
Andrea Eberly works as a clinical pharmacist in emergency medicine. Her stories have appeared in Witness, Southwest Review, Carve, Bellevue Literary Review and elsewhere. She is currently working on a novel-length work.
“Intro to Nursing” by Jessica Watson
BLAST, TMR’s online-only prose anthology, features fiction and nonfiction too vibrant to be confined between the covers of a print journal. “Intro to Nursing” by Jessica Watson was the runner-up in TMR‘s 2021 Perkoff Prize competition. In this reflective essay, part confession, part elucidation of process, Watson gives the reader an inside view of the challenges faced by an early career nurse.
Intro to Nursing
Author note: All reports included in this essay are recreations; in the interest of protecting identity, they are not actual patient reports.
The first rule of diagnosis I learned in nursing school: a diagnosis must be stated in terms of a problem, not a need. In our simulation labs on the third floor of the School of Nursing and Health Studies at the University of Miami, we’re clad in hunter green scrubs, our school color, representing the leaves of the Florida orange tree. Our school’s mascot is the ibis: elegant, white, gangly wading bird—the last animal to take cover before a hurricane and the first to reappear afterward. We live in the most hurricane-prone state in the country: hurricane alley lies just offshore on a path that ends in our living rooms. Green amid swarms of white lab coats and blue scrubs, we nursing students are easily recognizable in the local hospitals: Jackson Memorial, the University of Miami Hospital, and Holtz Children’s Hospital.
As students, we learn to identify problems while thinking on our feet through encounters with simulated patients like the SimMan® 3G. Laerdal, a medical supply company, makes several lines of manikins for emergency, trauma, military, and nursing scenarios. There’s Crash Kelly, MegaCode Kelly™, and Extri Kelly, who I can only imagine needs to be extricated somehow. For peds, PICU, NICU, neonatal, and labor and delivery nurses: Premature Anne™, SimBaby™, and MegaCode Kid. Patient-care manikins like Nursing Anne, Nursing Kelly, and Next Generation Harvey®-the Cardiopulmonary Patient Simulator, prepare student nurses for the fundamentals. For complete disasters, there’s The Ultimate Hurt.
In crews of three or four nursing students, we enter the bay to greet our manikin reclining on a gurney. The sim lab educational team debriefs us with a few sparse details about Harvey Sims in advance: thirty-five-year-old man, came in with shortness of breath, history of peripheral vascular disease. The rest of the scenario plays out during our visit. Our visits are called encounters, and this distinction ups the ante. We’re not just visiting the manikin; we’re encountering him; we’re unexpectedly faced with something difficult or hostile. In the first few simulations, I’m paralyzed by the sight of Mr. Sims. He’s stiff as the diaphragm of my stethoscope, rubber skin pulled taut on his plastic frame, eyes and mouth in perpetual surprise. His face unnerves me, and the metal springs inside his ribcage squeak with every chest compression during CPR.
In sim lab, we fail the simulation if we don’t fake sanitize our hands. I train myself over and over to remember to reach for the pretend sanitizer pump on the pretend wall, mimic rubbing my hands together with sanitizer made of air. I exaggerate the performance, exclaiming how clean my hands feel. “I’m rubbing a golf-ball sized dollop of sanitizer for no less than twenty seconds until my hands are dry. I’m rubbing my palms, back of hands, fingers, and wrists. Now I’m letting it air-dry completely before moving on,” I say to the instructors observing us.
We rehearse the moves with our manikin Harvey before we use them on real people. “Hello, Mr. Sims. My name is Jessica, and I’ll be your nurse today.” I put my stethoscope on his stiff chest to listen for lung sounds. I take his pulse by putting my fingers on his wrist, where his thumb juts out rigidly. I shine the penlight in his eyes and pretend that his pupils have reacted. My encounter with Harvey involves so much playacting that I’m not sure where to look or what to think. Do I pretend he has a pulse? Do I maintain direct eye contact with his painted-on, permanently surprised eyes? Do I wait for the voice on the overhead speaker to shout out that his lung sounds are diminished?
The first step to solving a problem is being able to describe the human body as succinctly as possible. We distill the myriad components of what keeps everyone alive and healthy into systems, hemispheres, quadrants, markers, and metrics, which are compared to a baseline or “normal” standard—a mountainous task made more attainable through the use of shorthand.
The first time I see a nurse’s patient report in its entirety, I’m overtaken by anxiety. If I was the type to faint or hyperventilate into a full-blown panic attack, this would be the moment. Instead, I’m the type to hold the spring of boiling, frothing water in my throat so that my own volatility blisters my insides. I spend several months learning to decipher these reports. My anxiety is made more severe by the realization that soon my job will involve assuming responsibility for the safety, health, and well-being of each person under my care.
Even so, I can’t help but marvel at the ingenuity of the nurse’s report.
Patient 1 Report
|Patient Hx:||HIV, ESRD w/ HD, pericardial effusions|
|Neuro:||opens eyes, – commands, pupils sluggish|
|Respiratory:||desats to 70’s during suction; CPAP* 5/5/40% (*vent setting)|
|GU:||HD Tu, Th, Sa; anuric|
|GI:||1 liquid brown BM; OG @ 50 – osmolite 1.5 @ 35 ml/hr|
|Peripheral:||RUA fistula +/+, R foot amput.; RLQ blake drain; 4 lap sites|
|Labs:||BG 168/185; Na+ 134; all else WNL|
|Lines:||L SC CVC, L fem a-line, L AC #20|
|Drips:||vaso @ 0.04, neo/levo standby; precedex @ 0.4|
|To Do:||CT Head; Check CXR; T&S|
|Ask MD:||Na+ 134|
|Notes:||rec’d 1 unit PRBC’s à Tmax 100.2|
So much of what we learn is passed down from nurse to nurse, and this is also true of shorthand, which for the most part I learn on the unit. I study the way more senior nurses write their own reports and orders on the order sheets. Sometimes I’m given someone’s report in its entirety at shift change. RUA is right upper arm and RLQ is right lower quadrant. The shorthand for lines tells us whether it’s in a vein or artery and where on the body. The first time we lay eyes on a patient, even before, during report, we begin a critical thought process.
Peripheral refers to extremities, or limbs, as well as peripheral vascular findings. Peripheral is where I document assessment findings such as surgical drains, dressings, and wounds, fistulas for hemodialysis, and amputations. Peripheral also means skin. Skin tells a story. Patient 1’s Report tells us about hemodialysis three times a week and a fistula on the right upper arm where machine lines connect with blood vessels for cleaning. I put my finger on the fistula and feel a buzz like the throat of a purring cat. My fingers tickle. Using the small diaphragm of my stethoscope, I listen for a woosh, a bruit. If both are present, it’s patent, +/+ on the patient report. If neither are present, I have a problem.
The doctor diagnoses Patient 1 with HIV, End Stage Renal Disease, and pericardial effusions. The nurse might diagnose the patient with something related to fluid volume or risk for infection, given that the patient receives hemodialysis. A nursing diagnosis can change minute by minute, depending on the patient’s vitals and response to treatments. In practice, a nurse responds to the patient’s needs faster than the time it takes to formulate a nursing diagnosis, but nursing school emphasizes these diagnoses and care plans in an effort to train the student nurse to adopt a certain critical thought process. As a nurse gains more experience, nursing care begins to arise from something more akin to instinct. Like the night I leaned in the doorway of my patient’s room, number two on the liver transplant list, watching him try to sleep, sensing that something was off. First a simple question: “Do you know where you are?” Then drawing a blood gas, alerting the team, rolling a ventilator to his doorway to keep on standby.
My first job taking care of real patients is critical care nurse in a multisystem intensive care unit in Orlando. The streets here don’t flood like they do in the city of my alma mater, but we find ourselves inside the cone of probability enough to adopt the ritual of annual hurricane prep. I’m on the hurricane team my first two years on the unit. Team A for Hurricane Michael, which means I sleep over and work the two day shifts on either side of my sleepover. Team B for Hurricane Irma, which means I work the day after the hurricane, when the power is out across most of the city and downed trees still line the roads.
The nurses on the unit range from fresh out of nursing school to veterans of twenty or thirty years. Every new nurse goes through a rigorous sixteen-week training program with an assigned mentor, which includes additional study outside of work. Our patients are the sickest of the sick, except for some in CVICU or lung transplant. We get our share of liver and kidney failure, transplants fresh from surgery, end-stage diseases, respiratory failure, sepsis, complicated GI surgeries, and chronic care patients. We wrap our code cool patients in Arctic Suns, affix pads to their skin which circulate cold water that drops core temps to 32-34°C: therapeutic hypothermia. We have a fair number of transfers to hospice or palliative care, plus withdrawal of life. Sometimes we get laterals from neuro or a patient with heart failure awaiting transfer to CVICU.
I’m assigned the color royal blue for my unit. My scrubs are Cherokee, Grey’s Anatomy, and Healing Hands. I buy a pair of New Balance memory foam sneakers and compression socks with rainbow stripes and polka dots. The socks compress at 15-20 mmHg and imprint ridges on my calves. It’s a 10-percent discount if I show my hospital badge.
I buy scrub pants with as many pockets as possible: two on the seat, two in front, with a pocket or two nested inside each, and the occasional added thigh pocket. On the loop of my thigh pocket, I clip a hemostat, ready to go. Hemostats resemble scissors but grip like needle-nose pliers. Of all my tools, this tool has most often bailed me out of a bedside situation, elbow deep in a “clean” procedure I can’t step away from. The grippers on the nose loosen any tubing wrenched too tight, needed in a pinch when changing and troubleshooting lines.
My EKG calipers ride my pockets next to the pens, ready to measure the distances on a heart-rhythm strip. Each patient has a unique heart rate and rhythm. The peaks, troughs, and distances between them, each accentuation, tells us where in the heart the beat originates and how long it takes the chambers to fill with blood and squeeze. All the heart songs are printed on scrolls every four hours and glued to paper. I unclamp each patient’s three-ring binder, put the strips in their rightful place. Scanning morning labs, I rub the critical labs bright with yellow highlighter, make them pop with alarm. Orders must be written with a black pen, so I carry several.
Before I enter the patient’s room to assess them and determine problems, I sanitize my hands. Then again after I touch anything in the room, again before touching the patient, and again after touching the patient, and once more outside the room. In nursing lingo, this is known as “the five moments of hand hygiene.” I’ve abbreviated “the moments” because they specify “after body fluid exposure/risk, and before clean/aseptic procedures,” as well.
Usually, I think of a “moment” as being a more intimate occasion. Perhaps even a momentous one. That might be the intention of calling them “moments”: to transform hand hygiene into an inviting self-care experience—a sort of rebranding of infection prevention as a self-indulgence. At the least it’s a helpful mnemonic device. Here, take a moment for yourself while pausing in the hall just outside your patient’s room. Drop a glob of sanitizer in your palm and rub your palms together as you breathe in and out. Take this moment, and every other moment of hand hygiene, just for you.
A single piece of paper determines my plan of care for the day. It’s the nurse’s patient report, given at 0650 then again at 1850, plus any notes, labs, meds, or other details I’ve scribbled onto the sheet. Sometimes I forget the sheets in my pocket when I wash my scrubs. In the drum of the washer, the paper disintegrates into a million pieces that coat my pant legs and sleeves like a light dusting of snow. I wash and rewash the scrubs, then pick the remainders of white pulp off the valleys of my pocket seams. By the end of day, the paper will be softened like butter by folding and unfolding, moved in and out of my scrub pockets a hundred times. Sometimes I check my pockets just to make sure it’s still there.
Patient 2 Report
|Patient Hx:||DM, substance abuse|
|Labs:||BG 600’s on admit|
|Lines:||L AC #18|
|To Do:||BG checks Q1H|
|Ask MD:||Pt requests morphine|
On a bad day, bed management sends us the difficult patients: according to report from the emergency department, a patient with a history of substance abuse who let his blood sugar go to get access to opiates. He claws at his hospital gown in bed and flails his arms and legs, disheveled locks of dirty blond hair partly covering his face. After I receive the Patient 2 Report from the outgoing nurse and respond to his first several call bells, the nurse manager of our unit tells me that in a previous admission, he was caught rubbing his central line on the toilet to get an infection in order to lengthen his stay. Technically, he’ll need to be on an insulin drip, which requires blood-sugar checks every half to one-hour. Technically, that falls under ICU jurisdiction. He’ll be on the call bell every ten minutes asking for morphine. As soon as I administer the morphine, he asks for more.
The secretary, the one answering his calls with her push-button speaker, will ask me for a plan, as in, “How are we going to handle this?”
The way I handle this problem, which is also the secretary’s problem, creates more problems. In addition to answering my patient’s call bell every ten minutes, I have to figure out how to get the patient to stop using it every ten minutes.
Nursing Diagnosis: Powerlessness related to institutional environment and unsatisfactory interpersonal interaction as evidenced by secretary asking, “How are we going to handle this?” and reports of frustration over inability to perform previous activities.
Here, the problem is powerlessness.
In response to the secretary, I stop at her desk on my way to the med room and stare at her a minute before responding. I’m tired. It’s around 7:00 in the morning, and I am not yet ready to be bombarded with call bells and needs and problems. “What can I do?” I say, then get back to work.
My response makes her cry. I only find out because the charge nurse that day, there to offer assistance and supervise the nursing staff, pulls me into the break room. She wants to ask me my version of what transpired with the secretary. She emphasizes that the secretary is a tough lady, and it’s extremely rare for her to cry.
A new problem arises, one I didn’t intend to create, one with origins I don’t entirely understand.
A nursing diagnosis is different from a doctor’s diagnosis. Because of the differences between doctor and nurse in scope of training and treatment, nursing diagnoses can focus on spiritual and psychosocial concerns. It wasn’t until 1980 that the American Nurses Association defined nursing as “the diagnosis and treatment of human responses to actual or potential health problems.” Emphasis here is on human, while medicine (what doctors practice) is thought of as prevention and treatment of disease. In essence, nursing treats the human, and medicine treats the disease. The spiritual realm is one area that nurses are permitted to diagnose and treat. For instance, we don’t need an order to call a rabbi to bedside. We don’t need to ask a doctor if the chaplain can pay a visit or if we can hold hands at the bedside and bow our heads in prayer.
As a nurse, I can diagnose patients with impaired religiosity, impaired individual resilience, disturbed personal identity, spiritual distress, powerlessness, situational low self-esteem, risk for compromised human dignity, risk for loneliness, risk for chronic low self-esteem. My favorite diagnosis of all is perhaps the “imbalanced energy field” because of the way it flirts with the metaphysical and territories wholly unknown.
For care of the patient with an imbalanced energy field, nurses ‘evaluate energy fields’ and perform ‘therapeutic touch.’ In a step called “the unruffling process,” therapeutic touch resembles Reiki as an intervention, wherein nurses lay hands two to six inches away from the patient’s body to “dissipate impediments to free flow of energy within the system and between the nurse and client.” The last part always gives me pause—the exchange of energy between nurse and patient. Suffering is painful to observe and engage, but there’s no avoiding it at the bedside. I believe empathy works in part by absorption of another person’s energy when in close proximity, and this can be an overwhelming and painful sensation felt within the body. How does the story our body tells change through that exchange?
Patient 3 Report
|Patient Hx:||Liver transplant, Etoh|
|Neuro:||opens eyes, + commands, agitated/paranoid|
|Lines:||R FA #20|
|Ask MD:||Pt delusions|
I remember well most of those encounters with patients when a powerful energy was exchanged. One of my youngest patients with liver failure was a twenty-something with stringy black hair and piercing, mistrustful eyes. On the second day I cared for her, she became convinced I was trying to kill her. Most nurses learn how to develop a sense of humor when it comes to these things, but I couldn’t help but feel uncomfortable. My patient scrutinized my every move and action. A self-consciousness overtook me, and guilt bloomed within me like an open wound. I started to feel raw and vulnerable, my emotions just at the surface of my skin so that an air current might set them off. All my efforts to convince her that I was here to ensure her protection and safety failed.
She watched me unwrap syringes and draw up medications. As I explained to her what the medications were and reached for her IV, I knew she was thinking about what she might do to my hands and how to turn the medicines on me.
Patient 3 Diagnosis
Nursing Diagnosis: Patient has risk for other-directed violence related to paranoid delusions.
Subjective Data: The patient states, “The nurse is trying to kill me.”
Objective Data: The patient has clenched fists and jaw. The patient eyes me suspiciously.
Plan for Care: Continue reassuring the patient. Continue reorienting the patient to time and place. Continue to explain the purpose of the liver failure medications. Continue to reassure that you’re administering medications for liver failure and not a lethal dose. Ask the patient if she wants family present. Ask the patient if she wants to speak to the chaplain. Continue to pretend that you’re not deeply, irrevocably uncomfortable, that you won’t remember this for the rest of your life, that you don’t begin to wonder if you are trying to kill the patient, because the patient is so convincing, because there is one reality outside the patient’s room and another reality inside the patient’s room. Pretend that when the hepatologist visits the patient, that you and the patient aren’t both crying for help with every sinew and muscle in your bodies.
Originally, ‘imbalanced energy field’ was called ‘disturbed energy field.’ The diagnosis of “disturbed energy field” was removed from the tenth edition of Nursing Diagnoses: Definitions & Classification 2015-2017. The editors explained their decision thus: “all literature support currently provided for this diagnosis is regarding intervention rather than for the nursing diagnosis itself.” The diagnosis returned in the eleventh edition of Nursing Diagnoses: Definitions & Classification 2018-2020 as “imbalanced energy field.” The difference between the two diagnoses, although a difference of one word (imbalanced rather than disturbed), embodies one of the goals of nursing: to be nonjudgmental. The word disturbed itself casts judgment on the diagnosis (and person); it tinges the diagnosis (and person) with something undesirable.
The ideal nurse is first and foremost nonjudgmental, perhaps so much so that they have one foot in the realm of the kind of implicit acceptance of anything human we’ve come to expect from our spiritual and religious communities. The ideal nurse wouldn’t use the word disturbed to describe anything about their patients. The ideal nurse legitimizes their patients through acceptance and listening. Imbalance within the body connotes more legitimacy than if something in the body is disturbed. An imbalance can be restored through care and attention, while a disturbance, like a colony of wasps getting knocked out of their nest, is not likely to be put back together into anything resembling its former self.
What is the difference between a problem and a need? For some reason, I often think of needs as being unmet, and problems as getting solved. You solve a problem; you have needs. When needs aren’t met, do they create problems? Are problems needs that can be met? Can a person have needs that aren’t problems requiring correction? The more I think about it, the cycle between need and problem seems like a hungry beast that can never be content. Do we feed it? Does medicine feed it?
Then again, why must our needs be problematized? Why can’t we state our needs – loudly, declaratively. Why can’t we make grandiose proclamations of need to the person next to us in the cafeteria sandwich line?
A problem can be physical, psychosocial, spiritual—so why is nursing tasked with the job of addressing all of them?
I need to breathe versus “patient has impaired gas exchange” or “ineffective airway clearance” or “anxiety.” I need to be closer to God versus “patient has impaired religiosity” or “spiritual distress” or “moral distress.” Outside the hospital, we have needs. Inside the hospital, our needs are transformed into entities with actionable plans and interventions executed by nurses for measurable outcomes.
“A nursing diagnosis is defined by NANDA International (2013) as a clinical judgment concerning a human response to health conditions/life processes, or vulnerability for that response, by an individual, family, group, or community.” It’s interesting that the diagnosis concerns the “human response.” Why human? Is there any other type of response? It’s interesting too that the diagnosis doesn’t just pertain to the patient, the “individual,” but can also extend outward to family or even an entire community. And it’s interesting that nurses’ responses can extend to ”vulnerabilities” as well as health conditions.
As nurses, we know that when the patient has experienced brain death and there’s nothing that can be done to reverse this condition, that sometimes the most vulnerable person is the closest family member. My first brain-dead patient was a woman who attempted suicide by an overdose of blood pressure medicine when five weeks pregnant. She starved her body of oxygen long enough that only a ventilator and continuous medication could keep her alive. Her husband was adamant that she was going to make a miraculous recovery and “walk right out of this hospital.” The family of my patient viewed me with suspicion whenever I entered the room to change a bag of medication or reposition her. The health care team was keeping her indefinitely in a steady state that couldn’t last forever, while the family pushed back and fought about prognosis.
Taking care of the husband was as important as taking care of his wife:
Patient 4 Diagnosis
Patient Hx: wife admit s/p suicide attempt, anoxic brain injury, five weeks pregnant
Nursing Diagnosis 1: Husband has complicated grieving related to his wife’s brain death as evidenced by lack of acceptance of the death, persistent painful memories, self-blame, distressful feelings about the deceased, and mistrust of the health care team and translife representatives.
Nursing Diagnosis 2: Husband has ineffective denial related to his wife’s brain death as evidenced by husband states, “a miracle is going to happen, and she will walk out of this hospital” and husband also states, “they just want her to die so they can harvest her organs.”
There are five stages of grief, more or less. We don’t necessarily move through all of them in sequential order. The husband embodied the first two: denial and anger. Sometimes he transitioned into bargaining, when I could hear him begging God for help. I felt stinging anger in his eyes when he looked at me; it was my natural instinct to look away. Before acceptance, the grieving might lapse into a depression—what the body does when it feels powerless.
Patient 5 Report
|Patient Hx||lung CA w/ mets, malignant pleural effusions; pt RRT to ICU for respiratory distress|
|Neuro||opens eyes, – commands|
|Cardiac||ST 110’s; systolic 90’s|
|Respiratory||Bipap 12/4/80%; sats low 90’s, tachypnic; use of accessory muscles|
|Code Status||Ltd to Bipap|
Because I can’t remember anything about the weather, or time of year, I don’t know when exactly this patient came to me. I know it wasn’t long after I got off my sixteen-week orientation with my preceptors sometime in February. Less than a year earlier, I’d passed my nursing license exam. Let’s say that it was late spring in central Florida, when the heat was beginning to build by midday and you could feel it pressing down on your face like a wet xanthosoma leaf.
I remember her as having long white hair that flowed over her pillow. Inside our perfectly climate-controlled hospital, there still wasn’t enough oxygen in the air for her. There would never be enough oxygen. The Rapid Response Team rolled her into my empty room on a BiPap, bilevel positive airway pressure, accompanied by her husband and daughter, who reminded me of New England, my home: modest in manners and appearance, forthright in speech, and stoic in their grief.
Since her code status was Limited to Bipap and she was already on Bipap, I had the sinking realization that there was nothing else we could do. No intubation, no CPR, no medications to restart her heart. Unless she miraculously recovered from her respiratory distress, she was going to die. I knew what it was like to try to assuage a family member begging for a miracle, but her husband looked to me for guidance. I had never had a patient in this state who was Limited to Bipap, had never gone through the motions before of caring for someone this way.
Her face was engulfed in the machine, a transparent breathing mask with a flexible cushion sealant that molds to the contours of the face. Straps go around the head and the mouthpiece connects by accordion tubing to a machine on wheels that houses the oxygen supply and control panel. The triangular shape fits over the nose and mouth for maximum gas exchange, but she looked so uncomfortable, head tilted away as if repulsed, back arched reflexively, that the BiPap appeared to be parasitizing her.
Her husband, a mild-mannered man in trousers and a button-down, sat dutifully in the bedside chair as if awaiting instruction from me. As his wife labored to breathe through the BiPap, he turned toward me, outside the room, and asked, “Is this it?”
Before instinct comes paralysis. But this wasn’t simulation paralysis; this was the real world.
There was an innocence and bravery in his voice, but what really unnerved me was how much faith he placed in my ability to answer this question. As though I knew exactly what was happening and what to do:
Patient 5 Diagnosis
Nursing diagnosis: Ineffective role performance related to despair as evidenced by me sitting in my chair looking despondent while her husband turns his head toward me and asks, “Is this it?”
Related Factors: Inadequate role preparation, skill rehearsal, and validation; unrealistic role expectations as evidenced by the fact that I never knew what it would feel like to let my patients die; inadequate support system because at the end of the day I couldn’t tell anyone what I did at work, I moved to a new city for this job and didn’t know anyone; stress; lack of role model
Subjective Data: Altered role perceptions; change in self-perception of role; change in usual patterns of responsibility or capacity to resume role; role overload; powerlessness
Objective Data: Inadequate adaptation to change; inadequate confidence; ineffective role performance; inadequate external support for role enactment; role strain, confusion, or ambivalence; uncertainty; anxiety; depression
The problem: I had never rehearsed this scenario before, didn’t know the protocols. I never thought of nursing before as the absence of action, as the opposite of saving a life.
The need: I needed support, backup from one of my colleagues. I needed to feel less alone.
Protocols exist as a way to continue the choreography of care despite any emotions. They tell the body what to do.
A senior nurse working the rooms next to me stepped in. I had met her in the lunchroom before. She was the nicest of the nice. Management often paired green nurses with senior nurses for these occasions.
She spoke in a hushed tone: “Your patient’s dying, right. Let’s make sure this is what they want, then write the orders.”
I followed her into the room to speak with the family. She answered the husband for me, “Yes, this is it. Is this what you want?”
Jessica Watson is a writer from New England who calls Florida home. She recently finished an MFA in nonfiction and became a nurse after dropping out of a PhD program in oceanography at the Rosenstiel School of Marine and Atmospheric Science. She’s currently at work on a collection of essays blending research, personal narrative, embodiment, and cultural criticism. “Intro to Nursing” is her second essay published from that work in progress. Growing up, she never wanted to become a nurse, but now she considers nursing one of the most profound professions.