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Saturday, November 5, 2022

November 5-6, 2022: Anya Jabour’s Guest Post on Legionnaire’s Disease

[Anya Jabour is Regents Professor of History at the University of Montana. She’s the author of a number of American Studies books, articles, & projects, including the great Sophonisba Breckinridge: Championing Women’s Activism in Modern America (2019).]

Hallucinating History: A Feminist Historian’s Reflections on Legionnaire’s Disease and Medical Mistreatment, from the Victorian Age to the Covid Era

In September 2022, I went to Poughkeepsie, New York, for a four-day work trip. My four-day visit turned into a four-week ordeal. More specifically, it became an extended experiment in surviving pneumonia, as well as contending with an often-frustrating medical system. It also offered me valuable insights into my own teaching and scholarship. Finally, it revealed the ways in which the medical profession’s historical mistreatment of women persists to this day.

During a visit to Vassar College to honor Professor Emerita Miriam Cohen on her retirement, I got suddenly, terribly, and violently ill. Although I’d felt poorly the entire time, I had chalked up my symptoms—headache, lack of appetite, and fatigue—to my recent shoulder surgery. Even after I ate at a highly-recommended Italian restaurant my first night, and found I was unable to enjoy my meal, I assumed it was nothing serious. I was pretty sure I couldn’t have COVID, since I’d had my fifth booster prior to my trip and I had worn a mask on the 12-hour trip from Missoula, Montana to Poughkeepsie, New York (although nobody else did!). 

So, I carried on with my planned agenda for the next two days. On Monday, I happily conducted research in Vassar’s Archives and Special Collections for my current book project, a biography of Progressive reformer Katharine Bement Davis. On Tuesday, I toured campus and mentally prepared to give the talk that Cohen had invited me to give about Davis, a Vassar College alumna (Class of 1892). I felt worse and worse, but I was well-prepared, and I spoke pretty much on autopilot. Although Cohen and others later told me the talk went well, I don’t remember much of it. What I do remember is that afterward, when I went to a celebratory dinner at the same Italian restaurant where I had eaten my first night in town, I enjoyed about a third of my meal before suddenly projectile vomiting all over myself, my plate, the table, and my fellow diners. 

The next day, an Urgent Care visit confirmed my illness was not Covid, although it presented much like it (lack of taste/appetite, vomiting/diarrhea, fever, headache). I also did not have Influenza A or B; my double vaccine prior to my journey had done its job. 

What, then, was wrong with me? Urgent Care staff said it was a stomach bug, advised me to rest and hydrate, and assured me I'd be better in a day or two.

They were wrong. 

Despite valiant efforts by Vassar faculty and staff to care for me first in my hotel room, and then in a faculty member’s home, my condition worsened over the next two days.

I was dehydrated and delirious.

At the insistence of my Vassar caregivers, I went to Vassar Brothers Medical Center, where I was diagnosed with pneumonia. Specifically, I tested positive for an extremely rare and especially virulent form more commonly known as Legionnaire's Disease. Wait! I hear you cry. I wasn't expecting Legionnaire's Disease! Well, one doesn't, does one? (For days, I found myself replaying the Monte Python skit, “Nobody expects the Spanish Inquisition!” in my head—I even posted the meme online—because I was so gobsmacked by this news.)

It’s actually a good thing that I was in such bad shape that I ended up at the ER because they did an amazing job diagnosing a really confusing set of symptoms—and even more confusing labwork! My bloodwork not only confirmed that I had Legionnaire’s Disease, but also revealed that my white blood cell count and other markers of my body’s ability to fight off infection were dangerously low, which explained how I had managed to become desperately ill from an infection that only manifests in 1% of those who are exposed to the bacteria. (I had known I had been suffering from burnout, but I did not know, until I saw the lab tests for myself, that my exhaustion and frustration had severely reduced my body’s ability to resist and fight disease.)

Fortunately, my team of talented physicians were able to figure it out. They probably saved my life. As I later learned, Legionnaire’s Disease is an especially lethal form of pneumonia, causing death in 70% or more of those afflicted without prompt diagnosis and treatment. And my case was stubborn, requiring 10 days of an increasingly powerful antibiotic regimen to respond to treatment. 

Meanwhile, throughout my week in the hospital, I was in danger of liver failure. Legionella pneumonia, unlike run-of-the-mill pneumonia, attacks the liver as well as the lungs—indeed, symptoms such as cough are slow to develop (my own cough did not manifest until I had been in the hospital about five days, more than a week after the initial onset of symptoms). Despite my antibiotic regimen, my daily bloodwork revealed that my condition was worsening, rather than improving, each day. 

The pulmonology specialists called in a team of infectious disease specialists to join my team. Three new physicians—in addition to the original ones, who still visited daily—monitored me around the clock and met to discuss my case daily. They switched me to an antibiotic that targeted Legionella specifically, rather than pneumonia generally. They ran additional tests to ensure that there was no medical reason that I was failing to respond to treatment. (Spoiler alert: There wasn’t. It was a result of three years of burnout and overwork resulting from the ongoing pandemic, policies at every level that denied the seriousness of the situation, and a dramatically increased workload as I—like teachers everywhere—learned Zoom and designed online classes with no warning and no institutional support—that had destroyed my body’s ability to fight infection.)  Finally, my condition began to improve, and the hospital’s head doctor discharged me after a week in the hospital. 

Scary stuff, huh? But, being a feminist historian, I dealt with this in the usual ways: by researching the ailment and by drawing comparisons to the past.

Legionella Pneumophilia was first identified and named (and what a great name, right?) at a 1976 American Legion gathering. So the disease has absolutely nothing to do with scary men in military uniforms, which is somehow what the name Legionnaire’s Disease connotes to me.  Although the mental image of men in military uniforms is rather intimidating, the Legion is an organization formed in 1919, just after World War One. They were all men, but the tie-in to my own research on women’s history in the era made this all seem much more familiar. 

While historically associated with men, Legionella affected women too—probably many more than we knew about, since it’s entirely possible that earlier influenza outbreaks, including the deadliest of all, the misnamed “Spanish Flu” pandemic that swept the globe in 1918, included patients actually suffering, and dying from, Legionella.

Although most sufferers, historically, are men, the feminine-sounding, lyrical name Legionella Pneumophila, as opposed to the masculine, militaristic Legionnaire’s Disease, sounded more welcoming to me. It also placed me firmly in the Victorian feminine malady camp, a world I know well through reading and research in nineteenth-century women’s history and literature.

Symptoms that are vaguely defined, seem to have no clear cause, and include headaches, fevers, cough, and fatigue are all reassuringly (to me!) reminiscent of Victorian ladies' ailments (consumption, for instance, as tuberculosis was called in the nineteenth century), as do symptoms like impaired cognition (brain fever, anyone?) and personality changes (how about hysteria?). While the condition is rare and mysterious, it can kill, so that familiar Victorian trope of the youthful (white) fragile beauty dying young (and thereby staying lovely forever) fit perfectly. 

On from contemplating lovely corpses to reflecting on hallucinating history. One of the most memorable parts of my whole medical nightmare—I mean that literally since I was delirious from lack of nutrition and hydration, as well as cognitive problems and personality changes resulting from Legionnaire's Disease—was my long night in the emergency room prior to my official admission to the hospital.

Yes, it turns out the Legionella has all kinds of fun bonus symptoms. Yay! Over the course of the next few weeks, I would suffer not only from what we now call brain fog but also dyslexia and dysgraphia. I didn’t know any of this at the time, of course. I mean, who expects to get Legionnaire’s Disease in this day and age? Furthermore, most people who are exposed don’t get it. I was just unlucky.

Or maybe lucky. As my best friend from grad school, a fellow Victorianist, later observed, I got to be my own Victorian heroine! Even at my worst, I found this oddly amusing and strangely comforting. I spent a lot of time thinking about the cultural trope of the lovely maiden who dies young in nineteenth-century art and literature. As I became increasingly weak and wan, I told myself that at least I got to be a pale and interesting invalid, like Ruby in Anne of Green Gables, one of my favorite series of books as a girl! (The problem with this scenario is that she dies, but let's bracket that for now.)

So anyway, I was in the ER, slipping in and out of consciousness .  . . have I mentioned I have a history of fainting and I fainted when the ambulance came to take me away? no? sorry-not-sorry, one of the super-fun symptoms of Legionella is brain fog! (Reader: Heavy sarcasm intended here. It is not fun at all!)

And when I was conscious, I could hear a woman down the hallway alternately pleading, demanding, and ultimately screaming to be let out. It went something like this:

Patient (almost a whisper): please somebody help me

Patient (tiny bit louder): please somebody get me out of here

Patient (louder): Nurse! Somebody! Please help me!

Patient (louder still, shouting):  Nurse! Somebody! Please help me!

Patient (louder still, shouting): LET ME OUT! GET ME OUT OF HERE! I WANT OUT NOW!

Background: quiet indistinguishable murmur, presumably from nurse or tech

Patient (escalating from shouting to screaming): PLEASE HELP ME! LET ME OUT! I WANT OUT! SOMEBODY PLEASE HELP ME! ANYBODY!

Now this was all super-disturbing, of course. But in a weird way only fellow Victorianists and women’s historians will understand, it was fascinating. It was so Yellow Wallpaper! For those not in the know, Charlotte Perkins Gilman was a phenomenal writer, a visionary economist, and a feminist force in turn-of-the-century America. Her autobiographical short story, “The Yellow Wallpaper”—now a major motion picture!—is based on her own experience with being diagnosed as “hysterical” and treated by way of “the rest cure.”

When Gilman manifested symptoms such as nervousness, lethargy, and melancholy following the birth of her first child, her husband sent her to S. Weir Mitchell, the preeminent “nerve doctor” of the era, who diagnosed her with “hysteria,” a catch-all diagnosis for any behavior that prevented elite women from fulfilling their assigned roles as wives and mothers. (Note for non-Victorianists; Gilman probably was suffering from what we would now call postpartum depression.)

The popular treatment at the time was the so-called “rest cure.” Many elite women likely enjoyed the “rest” from their onerous domestic duties at luxurious hotels in bucolic settings that offered fine dining, excellent service, and ample opportunities to bathe in natural hot springs, engage in outdoor recreation, and participate in social dances and parlor games, all in the company of other women.  While many women “took the waters” accompanied by their children, they were accompanied by a retinue of retainers who performed routine childcare tasks to allow the wealthy—and not always sickly!—mothers to enjoy rest, relaxation, and recreation.

Gilman’s physician recommended a more restrictive regimen. He insisted not only on no physical exertion but also on no mental stimulation and no social interaction. In her later writings, Gilman said that she attempted to follow the prescription of the famous Dr. S. Weir(d) Mitchell, which included social isolation and a total ban on self-expression. It also included entire absorption in motherhood, even though Gilman’s own written account of her case indicated that her melancholy deepened the more time she spent with her newborn. Dr. Mitchell declared: “Live as domestic a life as possible. Have your child with you all the time. . . . And never touch pen, brush or pencil as long as you live.”  Gilman later explained that she attempted to follow this advice, only to become "perilously close to losing my mind."

In the fictionalized account, the protagonist, a thinly veiled alter-ego for Gilman, receives direction from her husband, John. Like Dr. Mitchell, John insists on social isolation, indoor confinement, and bed rest; unlike him, John also insists on separating the new mother from her child. (Although atypical for the “rest cure,” this was common for women deemed to be suffering from postpuerperal psychosis, as physicians feared women would harm their infants)

At John’s direction, Jane is literally locked in her room. The bed is bolted to the floor; the windows are barred. Alone and unable to use her considerable intelligence, she fixates on the hideously patterned wallpaper, ultimately becoming convinced that there is a woman—perhaps several women?—trapped in the yellow wallpaper.

I think of yellow as a cheerful color; in fact, I purposely painted my living room yellow because I like the color and find it invigorating. But that's not at all what the color connoted at the time! It meant, among other things, disease and quarantine, and of course both Gilman herself and the main character of the “Yellow Wallpaper” were considered diseased and were in fact quarantined!

Plus, this was a hideous, poisonous yellow. Gilman’s protagonist’s first impressions were negative in the extreme. She described the unhealthy hue: “The color is repellent, almost revolting; a smouldering unclean yellow, strangely faded by the slow-turning sunlight.  It is a dull yet lurid orange in some places, a sickly sulphur tint in others.” 

So anyway, Gilman's protagonist tries to rescue the trapped woman by peeling off the wallpaper. In my memory at the time I was hospitalized, she does this by circling the room, peeling the wallpaper in a single strip, like I sometimes try to do with an orange or a tangerine. Maybe that's how it happened in Gilman’s story. Or maybe not. I teach this every spring, but my memory is not reliable just now. (Remember: Legionnaire’s Disease causes memory loss! So, in yet another way, it’s the quintessential Victorian ailment, in that it induces that perennially popular female failing, amnesia!)

I was in the ER for close to 12 hours before being transferred to the hospital, and during that time, I felt like the distressed woman down the hallway actually was Gilman begging her husband/physician not to diagnose her with "hysteria" and sentence, er, "treat" her with the "rest cure.” Moreover, as I was slipping in and out of consciousness, I began to hallucinate. In my own mind, I became the woman in the ER begging to be released.

This was of course profoundly disturbing, but it also offered me phenomenal personal insight into something I have studied and taught for decades. But it was especially meaningful at the time because I was (and now, am again) working on a research project that involved wrongful incarceration. The subject of my current book, Katharine Bement Davis, first directed a female reformatory and then was in charge of all of New York City’s jails, prisons, and reformatories. She always claimed that she advocated institutionalization, not incarceration—reform, not punishment. But even in my addled state, I understood full well that being locked up against your will without committing a crime is a function of the carceral state, not the caring state.

I also knew from my ongoing research that women could be confined to “reformatories” on suspicion of “immoral” behavior” in Victorian America. And during World War One—and well after it, more’s the pity—many so-called “promiscuous” women were imprisoned on suspicion of engaging in sex work or carrying sexually transmitted infections and subjected to dangerous, painful, and ineffective treatments with actual poisons like mercury and arsenic!

This was part of the “American Plan,” ostensibly designed to curb STIs among American GIs and keep them "Fit to Fight!" I had previously learned of the American Plan when supervising Kayla Blackman’s MA thesis; fittingly enough, Blackman is now my research assistant who helped me transform my fevered tweets into a (very) rough draft of this blog post! Although the title of Nancy Bristow's book on the subject, Making Men Moral, indicated that men were the targets of these new “public health” policies, in fact (as Bristow makes clear), the real effect was to further criminalize women’s behavior.

So, anyway, my ER ordeal (which was no way near as bad as that of the poor woman down the hall, who may very well have been experiencing a psychotic break and was probably sent to the psych ward, which they also tried on me at my second ER visit, but that is another story for another time!) gave me a lot of insight not only into the “Yellow Wallpaper” but also into my work-in-progress on Davis, who (thankfully) ultimately became an advocate of sexual freedom and self-expression despite her record of incarcerating suspected prostitutes and supporting the American Plan.

She eventually became an advocate of birth control and comprehensive sex education as well as a pioneering sex researcher whose 1929 magnum opus, Factors in the Sex Life of 2200 Women, openly and nonjudgmentally discussed masturbation, orgasm, and lesbianism! (I argue that Davis’s candid and sympathetic discussion of lesbianism was a product of her personal experiences as well as her statistical analysis; she herself was in a long-term, long-distance same-sex relationship.)

(Full disclosure: Both Gilman and Davis, for all their advocacy of rights for women like themselves—white, well-educated, and well-to-do—denied rights to women of color, poor women, and women they judged mentally or socially inferior. In short, they both advocated eugenics, although each later quietly retreated from their earlier commitment to institutionalizing or even sterilizing “unfit” girls and women.)

But back to me!  Even when I was fairly certain I was not losing my mind, I still had trouble sleeping, which exacerbated my symptoms, especially a severe cough, brain fog, dyslexia and dysgraphia. Perhaps most troubling of all for a professional historian, I also found that time became “slippery,” and I was unable to place even recent events in chronological order. 

While delirious in the ER, despite my addled state, I nonetheless recall being asked questions about the onset of my symptoms. The person who took me to the ER reported that I became ill Tuesday evening, but I knew my symptoms had actually begun on Sunday evening, just hours after my arrival. I kept staring at my phone, not understanding what I was seeing, stabbing at the “buttons” on the calendar app and willing them to make sense. 

My mental image of myself afterward was of a Neanderthal suddenly introduced to 21st century technology. Or, worse, of a mental patient; as the days and my symptoms progressed, those around me became increasingly convinced that I was severely cognitively impaired. Within a few days, I felt just fine in my own head, except for symptoms I understood, by then, as lingering after-effects of my illness. Because I couldn’t communicate this, however, the people around me continued to tell me that I was permanently damaged, unintentionally gaslighting me and causing me to worry that they were right and I was wrong. It was not until I had a virtual appointment with my therapist back in Missoula that I felt reassured that I was not, in fact, “irrational.” 

While I was no longer hallucinating, I began once again to feel like the main character in the “Yellow Wallpaper”: confined to a single room, unable to interact with others, and forced to rest without thinking, reading, or writing. I wasn’t well enough to enjoy the lovely home in which I was staying, because even visits to the bathroom brought on prolonged coughing fits, which often led to violent vomiting. Although I had around-the-clock care and company during the weekend following my release from the hospital, by Monday, everybody—logically enough—returned to their jobs. Indeed, I rejected offers for visitors, because I was unable to talk anyway. I was too exhausted to think or read, or even to watch TV or listen to music. Even when I felt the urge to create, I couldn’t write, either—at least not legibly. I also had great difficulty typing, in that I could not make my fingers actually strike the correct keys. 

When I could think and type, I posted about my horrific experiences on social media. But these posts, which were both my only artistic outlet and my only way of expressing myself since I could no longer speak as my cough worsened, soon created new problems. Because they were riddled with typos and often inarticulate, and because my frustration led me to an uncharacteristic use of profanity, my social media commentary convinced those around me that I was having a psychotic break. Ultimately, they advised me to stop posting entirely—which reminded me even more of Gilman, whose prescription had included giving up pen and paper.

I also worried that I might never be able to resume the work I loved, and that worry, no doubt, exacerbated my symptoms. It was a vicious circle.

But . . . I also had the green light from my physician to leave New York and return home to Missoula, which is exactly what I did just two days later. Now that I am finally home, reunited with my beloved partner and dog, receiving treatment from providers who listen to me, and surrounded by supportive friends, I am almost completely recovered from “Long Legionella.” That is to say, I can sleep, think, read, research, write, and type again. (Although this blog post began with captured social media posts, I’ve done additional research and writing since my return home, and it’s now roughly twice the length of the compiled tweets. I’ve also written a 32-page version of this story for submission to a local press’s nonfiction chapbook competition!). I can watch TV, and I can even hike with my dog! My lingering symptoms (short-term memory loss, an inability to focus on the printed page, and bone-deep fatigue) will, I am confident, resolve with time (lots of time! my estimated recovery time is up to two years!). I am ready, as I told a friend and fellow Victorianist, to enjoy a real “rest cure”—the kind that the elite women enjoyed at luxury hotels conveniently located near healing hot springs more than a century ago.

But most of all, I have reclaimed control over my own life. As the narrator of the “Yellow Wallpaper” puts it after her escape from her prison: “I’ve got out at last . . . and you can’t put me back.”

[Special anniversary series starts Monday,


PS. What do you think?]

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