Defiance of Death: How Medical Breakthroughs Shaped Emotional Distance to Disease and Dying

There is a trajectory to humanity’s relationship with death that runs in tandem with the rise and belief in science. When there was no knowledge of bacteria or viruses, and death could come from being cut by a rusty tool, death was an inevitability in a person’s life. Childbirth, measles, cancer, heart disease, could and did take our forebears with a regularity that made the invisible world of death a daily shroud. One worn as casually as you might wear a favorite shawl.

As science and medicine matured, and the invisible became visible in the form of microscopic enemies to be defeated, people became convinced in the possibility of outwitting death. Indeed, the discovery of hand-washing alone became a game-changer in the outcomes of many who would have otherwise succumbed to sepsis or infection from cross-contamination between patients.

As a historian who studies and teaches the Civil War, I have a fascination with my students’ general lack of appreciation for the way combat medicine advanced the field of medical knowledge in the mid-nineteenth century. Instead, students are appalled by what they deem egregious lack of sanitation knowledge in field hospitals and army camps alike. Students know only a world where a malady can be repaired, cured, erased, healed, with what they perceive as an almost willful disregard for death. Death, when it happens today in a hospital, under ideal sanitary conditions, is an anomaly. It is an inconceivable outcome in a world of science, order, and knowledge.

In a field course I’ve taught about cemeteries and the changing perceptions of death in America, one of my lessons is about this very topic. That our rational distance to death, the proximity of our mortal lives to death, are in exact proportion to the extent that we believe science and medicine can and will save us in the event we need it to. We witness mass refutation of the pandemic that rages around us. Individuals, cities, and entire states refuse to follow stay-at-home orders. This attitude persists in direct evidence of climbing death rates in places like New York City, Seattle, and New Orleans. Newsfeeds are overrun with personal stories of loss, of battling the virus, of being near death, and still the public goes to Home Depot to get mulch, or Walmart to pick up a bathing suit, in willful ignorance of the seriousness of the situation. Perhaps this disregard stems from an inherent belief that our modern existence is so infused with science we cannot be unsafe.

This blatant defiance of the stay-at-home order got me thinking about the underlying cause for such behavior. Yes, there is a backlash to the order by some who claim the orders violate their personal liberties, and I do anticipate that we’ll have to be particularly vigilant about requiring our local, state, and federal governments to reassert our freedoms and privacy when this emergency abates. But the behavior also reflects an imperviousness to infection, a cavalier attitude to COVID-19 that even if a person gets sick they’ll be fine. More concerning, are those who outright refuse to believe the pandemic is happening at all, that it’s a conspiracy of some sort. Stories about hospitals running out of sedation medication necessary for intubation, not having enough ventilators to treat the worst of the ill, doctors and nurses succumbing to COVID because they haven’t protective gear, mobile morgues. These are all scenarios out of science fiction. They don’t register as personal unless a loved one or an individual is faced with the reality.

We believe so fully in the ability of medicine and science to cure all that ails us that when faced with a pandemic to which we have no immunity, no cure, no way to miraculously heal the afflicted, we reject the severity of the illness. For so many years science and medicine acted like the miracles we needed them to be. We’ve been able to distance ourselves from the reality of death because, for some of us, a week’s worth of antibiotics have fixed us right up. The flu shot, though not perfect, gave us the armor necessary for facing the day.

This isn’t a perfect world. And many who need medical care never get it. The American healthcare system is broken and unfair to most. Insurance companies take decision-making out of the hands of caregivers. Those who can’t afford insurance, go without even basic care. Healthcare suffers from racism, ageism, ethnocentrism, gender disparity. For many of us in the US the healthcare system is complex, terrifying at times, frustrating, and heartbreaking. And yet, we still collectively believe in the science behind current medicine. We still unfairly imbue doctors and nurses with the ability to cure anything, and expect this outcome, and reject failure when it comes.

Healthcare providers and scientists work with the tools, knowledge, and skills they have available, and that is a considerable wheelhouse from which to draw. But the truth is, that even with top scientists researching new medications, dedicated doctors and nurses tirelessly working the front lines, diseases exist that will come along and devastate us like this current novel Coronavirus. It will rock the scientific community to its core. It will decimate a generation of caregivers. And yet people will still believe they are somehow impervious, because we’ve lived in a world dominated by medical miracles. Older generations remember grievous illnesses like polio, and the way medicine and science saved lives, making them particularly susceptible to believing this current virus is not as threatening as it is. But we also have younger generations who have never lived in a world where disease seemed threatening, making them vulnerable as well. The reliance on medicine to provide an invisible shield between us and death has been growing with each new advancement. Historically, as we gained the upper hand over seemingly incurable diseases, we became less comfortable with death and dying, distanced from the event. Death didn’t live with us daily and so we could ignore it. For the most part this ignorance came with little consequence.

Today, death could be on our Amazon package, could be lurking on our doorknobs, could be on our hands, literally. Death is a droplet expelled from one’s lips. Death is one kiss, one sneeze away. We can’t process this. Recommendations to wash hands for twenty seconds as one of the top ways to prevent illness should be a laughable order, but we’ve become so inured to death and disease, we don’t even do that regularly. The breakthrough discovered over one-hundred and thirty years ago that my students always seem to be most shocked by—washing hands as the prevention of infection—has become a novel way to battle this new virus. That should tell you something about the current complacency of people’s fear over infection. We’ve forgotten that the simple act of hand washing was the medical breakthrough for a generation of medical providers. Our brains can’t process that science may not happen quickly enough to save all of us this time, and so people go about in reckless defiance of the specter that may inevitably visit.

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Alice

I have loved dogs my entire life. There was Quinnie, and Bones, Whiskey, Wendy, and Katie. I grew up with them, always aware of how having them in my life made me somehow one of the lucky ones, missing their presence once it was gone.

But Alice is another story altogether. My shaggy Scottie. My stubborn Scottie. My Scottish Terrier Warrior Princess. She is the first dog to whom I felt an incredible attachment, a connection of souls. We invited her home in 2010. A 12-week-old, gangly puppy whose head was the same size as her body, whose tongue would drag on the sidewalk because she hadn’t grown into it yet. Stubborn and funny and smart. I loved her quirky personality, her fierce independence. I was smitten.

There’s no real way to explain the way I feel about her. Just like there is no real way to explain how deeply I feel about my children, or my parents, or my husband. Love just is, sometimes, and when you feel it that’s all that really matters.

My girl has had a hell of a year. Starting somewhere around end of August 2018 she started limping, acting like her rear leg was painful. We took her to her doc and he diagnosed a CCL injury (just like an ACL tear in a human’s knee). We consulted with amazing specialists and opted for a surgical repair. She came through surgery like a boss. We got her a playpen to sleep in, and for confining her when we worked. She wore her cone, and took her meds, and handled physical therapy, and allowed us to carry her everywhere for 12 weeks. She was the perfect patient. She healed, and her spirit was fierce as always.

I was leaving on a research trip May 21st and would be gone a week. The night before I left, a freak storm rolled in that dumped 8 inches of heavy, wet snow. I was running errands with my husband until 6 or 7 that evening, and I was pissed that the storm had to hit then. I worried about driving the hour north to the airport in the morning. We got home and the dogs (Alice has a brother: Buck) went out as usual. My son noticed something odd about Alice’s urine: it looked bloody. I thought it might be a shadow on the snow, but went out with a flashlight. Sure enough it was pure blood.

I asked my husband to please take her in to the vet the next day. I was worried she had a UTI and wanted her to get looked at immediately. He called his work and arranged to make it happen and updated me by text as I sat in the airport waiting to board my flight. She got antibiotics, and a recheck appointment for when I got home if she didn’t improve.

She didn’t improve. The day after I got back my husband and I sat watching Alice’s amazing doc as he showed us on ultrasound a mass in her bladder. Without any preamble he scheduled her for surgery the next morning. I thanked god for that snowstorm.

My sweet girl had surgery. Her doc is incredible. A truly skilled surgeon, and a compassionate doctor, who did an amazing job removing her tumor. We sent it off. Then we waited. Alice again slept in her playpen at night, did not have to have the cone as she couldn’t reach her surgery site to lick, allowed us to carry her to go outside. She is a super patient, with super patience.

A week into her healing, doc called with the results of the histopathology. My sweet girl’s mass was cancer.

I was gut punched. I went into clinical mode (I was an emergency veterinary technician in the past) asking questions, making notes, but all the while I was numb.

I had the doc on speakerphone so my husband could hear. He was pale.

Today my girl had her sutures out. We have a script for a drug that can help with tumor suppression, and cancer management. We are still considering all our options of treatment. I’m still gut punched, I’m still numb, and at times I find myself overwhelmed with grief. Then I look at her beautiful, graying face, with her bright and shining eyes and my heart leaps at the time we’ve had and the time we’ll have.

One thing is for certain: Alice will live her best life for the rest of whatever time she has left.

I can’t think of the future yet. I can only think of today. Tomorrow I will think of today.

If you see more pictures of Alice, or more stories of Alice coming from me, this is why. I’ve taken pictures of her and written funny things about her antics her entire life. But now, I am marking that existence, her mark on me to celebrate our days together.

This is my love letter to Alice.

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UJ

I can’t really pin down a single memory that is a favorite from my lifetime shared with my Uncle Johnny because they’re all my favorite. UJ had a way of making the mundane fun, of creating play from chore, and laughing all the while. Sweeping his shop, or getting water from the well at the cabin, or doing dishes, these were never boring when doing them for him. He teased us lovingly. He gave advice unflinchingly. He loved us unconditionally. UJ was beloved, not because he was a saintly person, but because he was intensely human. UJ lived every day fully. He died yesterday just nineteen days shy of his 91st birthday.

He was many things to many people. To me he was always my cheerleader. He was proud of me, and I know that because he told me it was so. UJ loved so many. And so many loved him back. I’m a better person for his love, and I will miss him.

God speed UJ.

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Contingency Plans

The text conversation ended quickly.  With the final bubble resting on my screen, taunting and ominous, I felt more of my hopes and security dripping away.

“Three classes maybe, but never four.  Probably not three either. I’m not optimistic.”

It seems ridiculous that such small sentences could reduce me to a condition of self-reflection (nay self-doubt) about my value, but it happened.  I felt commodified. De-coupled from the world that brings me such professional satisfaction.  Reduced to a set of bubbles on a screen.

I am positive that the colleague and friend on the other side of that conversation had no intention of hurting me.  In truth, I trust this person implicitly to be kind and generous.  Yet, the life of contingent faculty is filled with such moments:  pride one minute in one’s good fortune to be teaching in their field; despair the next upon realizing an administration can decide the limits of that joy.  I am contingent faculty for a university I love.  I love the departments I teach in.  I love the students that honor me with their presence in my classroom.  I even love the stressors of finals weeks.  What I don’t love is the scrabbling I must engage in to have gainful employment each and every semester.  The pin-pricks that turn into slashes; great sanguinous wounds only staunched by my stubborn refusal to leave behind the discipline that defines me.

I choose to live in this world of mist and hope.  I could easily find another job to fill my existence with satisfactions.  And this is where the tug-of-war plays out in my heart.  I could leave behind the constant nagging fear of contingency and have stability.  But what would I lose? I can answer that question easily enough.  I would lose the parts of me that I won for myself.

The path to my Master’s degree wasn’t just bumpy, it was downright boulder-strewn.  I almost finished my undergraduate degree when I had my first child.  I took time off from school to raise him and the younger brother that came into our lives three years later.  I was married at that time to a man who graciously allowed me to stay home, but then became attached to my entrenched position.  I went back to school a class here, another there.  But it would take a divorce, getting a full-time job, and a second marriage before I would be encouraged to finish what I started.  My new husband clearly understood the driving need I had to complete my degree.  With his encouragement, and two wonderful young sons cheering me on, I went back to school.

I finished by bachelor’s degree, and my master’s.  I fulfilled a promise to myself, I never thought I could.  My degrees stand for so much more than just the ability to get a job.  They define my deep-seated goals, held since childhood, to contribute to the larger conversation of what it means, and has meant, to be human.  Ten-year-old me fantasized about being a professor, and teaching a roomful of eager students in the hallowed halls of a university.  When I got that chance, my head nearly imploded.  I understood the tenuous position being offered:  contract only, no benefits, this semester only.  But I was going to teach in a university.

Each semester I know my position is not guaranteed.  I hold no one responsible for this, and constantly use my time to refine my research, gain pedagogical knowledge, I write, and find uses for my skills.  My husband’s full-time job affords me the small flexibility to sustain this lifestyle.  We are hanging on, our needs are met, but we live modestly as a result.  These are the choices we make.  But…moments like the conversation above that started all this, make me catch my breath.  I have to redefine myself after such exchanges.  Remember I am still valuable.  Disconnect myself from the bureaucracy of the academic world and reconnect to the reasons I chose to be an independent scholar.  Remind myself of the folly of pursuing a Ph.D when there are no guarantees that such a path will provide anything different for me.

My post today is cathartic.  Writing the demons away in a very public setting seemed the right choice, if only to feel as if I am not langouring in my despairing mood solo.

Contingency plans are always present for me.  Writing this statement makes me laugh even when I’m feeling low:  the unexpected perfection of phraseology inherent in it.  I chooose this life, and for someone who is a planner by nature, I shake my head at this choice all the time.

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Ugly Poetry

Ugly Poetry

Today words are ugly

and poems that use

pretty words

disgust me

Trying for some transcendent

place by being

witty

and spewing the “ripples on the pond”

banality

Why not a poem filled

with ugly words?

dust or cancer or

clutter or

decay?

Even these are too

pretty

and it’s not enough

to just be angry

or hurt or

betrayed—

Words don’t always

have to inspire

or lift up

Poems don’t always

have to lilt

I want this one

to fall

flat

and get hurt

,

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When It’s Been A Year Since My Last Post…

I’m still writing about historical subjects, but blogging about them has taken a back seat to…life.  

This isn’t an excuse, just a fact that is inescapable.

I made a self-promise that I would be more disciplined, and write monthly to get back in the game.

Yet I’m not ready to put history to paper today.  Instead, I wrote a non-history something.  And rather than put it somewhere else (like the depths of my recycle bin) I’m publishing it on my blog.

A poem if you will (or won’t).  A loose consciousness of the will to write.

On writing after the absence of one year:

Being in a delusional amount of pain

The distance of thought and the wanting it to be so good

Streams of tension in my neck cry out for relief

The bang of the shutter so infrequent that I forget it will bang

It is quiet but there are sounds all around me

I am alone but not lonely

The ball of fuzz in the back of my mind

The weight of the task on each eyelid

Indecision numbs my legs

Constrictions in my chest are more the bra than fear

But the fear is there

Conscious of my task now I’m pushing it to be good

Trying to be witty

Wanting it to be good

This is what I hate

And what I love about writing
Love it or don’t.  I wrote.

🙂 Amy

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NEH Institute and Visual Culture

I am pleased to announce that I have been invited to participate in a National Endowment for the Humanities Summer Institute on the Visual Culture of the American Civil War and its Aftermath, facilitated by the American Social History Project, Center for Media and Learning at the Graduate Center City University of New York.  Words cannot adequately describe my anticipation for this event—and perhaps rightly so, considering the subject matter!  The opportunity to study with acclaimed historians on a subject so meaningful to me is a rare gift.  Rarer still, is the chance to be fully immersed in such study; to live and breathe the research away from the day-to-day distractions of my world at home.

I am acutely aware of the power visual media holds on public opinion.  Images can frame an argument clearer and more precisely at times than can words, and often reach audiences that would otherwise ignore print messages.  Take internet memes for example.  A scroll through social media can, at a glance, give a fairly succinct indication of the major issues titillating, rankling, and angering the populace at-large.  These memes can enlighten, influence, and form public opinion, and often create new awareness among viewers, who then forward the meme to others, thus expanding the reach of the message.  The mother of a teenager, I see first-hand the way that visual media affects and influences the generation who grew up with the internet.  My son often uses memes as entertainment, but I also find him occasionally using meme content as a way to refine his opinions about a particular person, or subject.

Historians are challenged when confronting visual media from the past as we may not be culturally attuned to the messages conveyed.  The ability to suss out the inside joke, or the obscure cultural reference is the difference between deep understanding of the material and an academic textual read only.   Take editorial cartoons as an example. When viewed as a series or synthesized group, major concerns can be derived for a given period.  When considered with concurrent events, the biases of the publisher, and the experiences of the readership, one can gain a significant understanding of the deeper concerns of the day.  Historians can then use the information being transmitted visually (the people, companies, legislation, etc. depicted in the image) to determine the nuanced cultural messages important to the era, and more closely analyze the meaning of these messages.

The NEH Summer Institute offers the opportunity to explore the world of Civil War-era visual media; to put tools in my hands that will allow me to expand the way in which I approach, analyze, and relate the messages contained within historical images.  We live in a world inundated with cultural messages transmitted via images.  This statement holds true whether discussing the year 2016 or 1860 or 1750.  Incorporating the fine arts, cartoons, photography, maps, and other visual media into a broader analysis of a historical time period is necessary in order to come to a deeper understanding of the undercurrents pertinent to a given age.

I am thrilled to be able to participate.

-Amy

 

 

 

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