[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,
Ben
PS.
What do you think?]
