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~ Victoria Borland vs. the 20th Century

A Louder Silence

Monthly Archives: April 2013

A Moment of Science

29 Monday Apr 2013

Posted by victoria in Introduction, Science

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background, neurology, polio, science

Let me say this straight out: polio is not an easy thing to write about.  Not an easy thing to characterize, anyway, without distorting it, without allowing some kind of bias to creep in.  And in saying that, I join a long tradition of skewed perspective: it is impossible to paint a clear-cut picture of polio because such a thing doesn’t exist.  Sixty or seventy years ago, a thousand questions went just barely unspoken in millions of households across the country: how dangerous was the disease, really?  How likely was it to disable you permanently if you caught it?  Who was most vulnerable—rich, poor, black, white, girl, boy?  How many communities would it strike?  Would it strike me, here, today?

http://graphics8.nytimes.com/images/2005/04/10/books/groopman450.jpg

If knowledge is power, they were grasping at straws.  In some years there were 20,000 diagnosed cases; in others, three times that.  Sometimes an individual outbreak paralyzed only one in a hundred victims; other times, one in two.  Adults were more likely to end up devastated, but children caught the disease in greater numbers.  Cancer killed many more people each year than polio, but polio did cause 22% of all physical disabilities among New York City’s children in 1944, and most of the other causes were congenital, inborn.  Epidemics began like clockwork in mid-June, rumbled inexorably toward August, and faded to murmurs by late September, and we still aren’t entirely sure why.

If you believed the March of Dimes’ alarmist public service announcements, and took the tragic, lovely poster children who smiled from shop windows to heart, you were probably too terrified to ever leave your house.  Affronted doctors worked constantly to counter newspaper coverage that reported casualties in offset boxes like sports scores, tired of calming parents who believed a diagnosis presaged certain death, and if you believed them you probably weren’t worried enough.  The approach modern commentators tend to take runs something along the lines of, “Well, the public probably percieved polio as a greater threat than it actually was, both because it was so frightening, and because the media coverage of it was so extensive.”  Which is true.  But it’s nothing like a conclusion, nothing like information, nothing like clarity.

If the story of polio is anything, it’s a tale about the ways in which perception transforms into reality.

But it’s also science, of course, and science is objective and explainable—at least, we like to think it is.  The world is unpredictable, and things we like to think of as absolute are too often contingent on variables beyond our control.  There are so many different presentations of the virus, so many possible “clinical syndromes,” that an early medical text proposed eight or nine different “types” of polio-related illness; all were drastically distinct, and at least half potentially fatal.

This, at least, is true: polio is caused by a virus, the uncreatively named “poliovirus,” part of the same family as the viruses that cause most stomach upsets and a half-dozen different kinds of common cold.  The word itself is a little bit bizarre: squat, and kind of ugly, and if you don’t know its Greek root, meaningless.  A shortened form of poliomyelitis, I’m not sure knowing what it means makes things a whole lot better: polios is Greek for “gray,” and a myelitis is inflammation of the sheaths that protect the nerves of the brain and spinal cord.  And they did mean “gray brain swelling” literally: it was merely a blunt description of the damage done to the nervous systems of those who died from the disease.  Their nerve tissue would be drained of color on autopsy, faded to grayscale from its normal healthy pink.

The gray death.  It doesn’t have quite the same ring to it as bubonic plague, but if you found yourself in its path it was every bit as terrifying.

Viral infections propagate in several ways, but the most common, the one that the poliovirus uses, is especially brutal and crude: once the virus enters one of the body’s cells, it replaces the genetic material that carries the cell’s “instructions” with its own.  Rather than producing the proteins that keep us alive and healthy, the cell begins to churn out endless copies of the virus.  Unlike the proteins, these new viruses have no way to escape the cell, and the membrane swells until it bursts.  Too devastated to repair itself, the cell dies, and uncountable new viruses flood the surrounding tissues, looking for new cells to colonize, so the cycle can begin again.  (There is a particularly good illustration of this the National Museum of American History web site.)

When this happens in the initial stage of the infection, when the invasion is “systemic”—distributed throughout the body, replicating mainly in the stomach—this is unpleasant, but not especially devastating.  The vast majority of the body is more than capable of regenerating, after the immune system kicks into gear, and a few long days of misery come to an end.  It’s when the infection burrows deeper that the stereotypical paralysis occurs: once it breaches the nervous system, the poliovirus has a particular, peculiar affinity for the nerve cells known as the “anterior horn cells” of the spinal cord.  These cells form the chain reaching from the brain, where the impulse to move originates, down the spine to the muscles, where the contraction itself occurs.  And with each cellular “lysis,” those connections grow weaker and weaker, until the line finally, agonizingly, goes dead.

sdmesadotedu

We move more than we realize.  As I’ve been sitting here, I’ve readjusted in my chair a half-dozen times, crossing and uncrossing my legs, boosting myself up to tuck them underneath me.  When I’m at a loss for words, I crack my knuckles, wiggle my toes, push my hair obsessively behind my ears and then ruffle it free again.   During one particular stuck moment I got up for a quick set of jumping jacks.  Even typing requires a spectacular coordination, and when I think too hard about how it happens my fingers stumble on the keys.  It’s almost surreal to think that these things we do so thoughtlessly, these incredible fluid movements, originate as nothing more than electric shocks, racing through our bodies at literal lightning speed.  But that’s exactly what they do.

Muscles are dumb.  I’ll talk far more about them later, when I discuss physical therapy in more detail, but they just aren’t terribly ambitious: the only thing an individual muscle fiber knows how to do is contract.  It doesn’t even know anything about relaxing, not really: it’s either on, and squeezing, or it isn’t.  And somehow these many thousands of binary decisions, distributed throughout the six hundred and fifty muscles that string us together, make possible the incredible feats of dexterity we think nothing of every single day.  I could talk about ballet dancers and sculptors and ultramarathon runners.  But I prefer to think of the astonishing complexity of small things: cooking breakfast.  Writing by hand.  Putting on shoes.   Getting in and out of chairs.  Pushing up on tiptoe to reach that thing on the top shelf.

It’s those things you miss the most when they’re gone.

But I’m getting ahead of myself.

As I alluded earlier, polio is on the most basic level a stomach virus.  It’s where the infection usually originates, and it’s where the infection in most cases stays.  “Abortive” polio, it’s now called, and it isn’t any fun—the sore throat is wicked and the nausea can be debilitating—but if that’s the extent of the infection, after a couple of days you’d be in the clear.  (Most of the time, anyway: in some cases, the symptoms disappear for a few days in a kind of “dormant” period, before returning again with much greater ferocity.  Polio narratives are thick with these kinds of frightening uncertainties, and the sense that no one was ever quite entirely safe.)

open-source-craniodotcomThe next possible manifestation of the disease, for those not fortunate enough to recover right away, is called simply “nonparalytic polio.”  It’s more properly a meningitis, which most people have heard something of: an inflammation of the lining that covers, and under most circumstances protects, the brain and spinal cord.  It’s a different kind of infection from the bacterial meningitis that sometimes makes the news, but it’s still extremely uncomfortable and potentially very dangerous.  The compression on the nervous system causes extreme sensitivity to light and sound, and dramatic stiffness of the neck and back, with a headache so severe and sudden it’s sometimes described as a “thunderclap.”  But as long as the poliovirus stays around the nervous system and not inside it, when the fever breaks and the pain subsides, the exhausted rigidity vanishes with it.

wiki spine

In anywhere from five to fifty percent of cases—the three different “strains” of the virus varied greatly in severity, as did the accuracy of case reporting—the infection keeps pushing deeper, until it breaches the tender innermost spaces.  Stereotypically, the virus spreads through the nervous system in an “ascending paralysis”: entering at or near the base of the spinal cord, the virus climbs that chain of cells, spidering its way back up towards the brain, ravaging the cells it commandeers in the process.  The body is wired more or less from the bottom up, too, so that so-called “milder” paralytic infections, choked off quickly by a panicked immune system, leave behind the leg weakness typically associated with the disease.

As the damage rises, the difficulties become more sweeping and severe: about halfway
up the back sitting becomes a struggle.  A little higher, and moving the arms is all but impossible.  As the infection pushes into the uppermost segment of the spine, the cervical spine that flexes in the neck, breathing is suppressed; that’s the area wired to the diaphragm, which controls the inflation of the lungs, and just above the rib muscles that expand and contract to make room for them.

In what is arguably the most extreme form of the illness, it creeps all the way up to the base of the brain itself (“bulbar polio,” referring to an archaic term for the brainstem), which controls everything we do without thinking about it.  It keeps our hearts beating.  It keeps us from forgetting to breathe.  It sends the signals we need to digest food properly, and governs reflexes like the one we use to swallow it.  It controls our body temperature and our sleep.  And it can be torn apart as surely as the motor neurons.

The fallout from that, as you can imagine, is devastating.

I tell you these things because it’s important to understand the mechanical assault, to fully grasp the firestorm happening inside patients’ bodies.  It’s important to understand because these facts form the basis for the incredibly contentious debate that erupted over the best practices in physical therapy for polio.  I tell you because I want you to know what we’re dealing with, and the magnitude of the physiological destruction it wrought.

poliotemBut understand this, too: we didn’t even know most of these things for sure, back in the forties and fifties, when this terror opened up communities like it was ripping out a seam, warping the pattern of everyday life, exposing the fragile, private lining from which we tried so hard to avert our eyes.  It was a time when the departments of neurology and psychology could be headed up by the same person, before accurate conduction studies to map beleaguered nervous systems, before the electron microscope let us see our enemy up close.  (The poliovirus was first imaged in the early 1950s.)  When we were so desperate not to acknowledge our helplessness in the face of this wayward force of mother nature that we injected patients with paralytic poisons and the blood of other victims in an attempt to arrest the progress of the disease.  It was not a time when logic, as we understand it now, ruled the day.

These patients—these kids, mostly—didn’t care what was going on in the deepest reaches of their cells.  It’s disingenuous to say that we shouldn’t either—that’s why I told you all about it.  But it tells us nothing about the things that really matter: the brutal contagion of fear, the stigma and terror of isolation, the pain and the stares and the shame.  The details are interesting mainly in that they are so brutally indifferent, and we are so much at their mercy.  The details are almost insulting.

What polio was is a notion utterly divorced from what polio was like. 

And now that we’ve covered the basics, it’s time to delve a little deeper.

A Statement of Intent

26 Friday Apr 2013

Posted by victoria in Introduction

≈ 1 Comment

Tags

elizabeth kenny, introduction, me, polio, writing

The syrupy exhaustion descends a little at a time, a slow slide of the dimmer switch on the world, darkness fogging your thoughts.  The world seems suspended, or maybe that’s you—something’s off about your relationship to the ground.  Gravity isn’t working quite right, and it’s making you dizzy, and you can’t remember what you’re scared of.  You’re drenched in clammy sweat, even though that doesn’t make sense, because the droplets are running off unevenly, pooling in between the constellations of goosebumps on your skin.  There’s a miserable knot in your stomach, and your limbs are filled with shifting sand.  The pressure tightening around your temples has such physical weight it feels like you should be able to shake it off, but when you try the pain just clamps down harder.

It’s 1940, and you are inside your worst nightmare, and you’re afraid to even tell anyone, for fear of what they’ll do.

We hardly remember what the word means, now, but for fifty years, from the turn of the twentieth century to just past its midpoint, there was nothing in the world more instinctually terrifying than the specter of polio.  More permanent than the Depression, more personal than any war, it had the power to upend lives almost overnight, transforming healthy citizens into weak, cramping phantasms, struggling for breath.  Once the illness began, there was virtually no treatment, and certainly no cure.  No way to know who would escape unharmed, who would be paralyzed, who might lose their life.

Polio victims left home in ambulances, and they came back transformed.  Whether or not they returned in wheelchairs, supported by crutches or canes or the heavy metal leg braces that for so long functioned as cultural shorthand for the disease, they were newly burdened, weighted, in a way no one else seemed quite able to fathom.  And that metamorphosis held an entire nation in terrified thrall.

Because polio changed people.  And not just on the outside.

We have—and, especially, people had then—this preconceived notion that being disabled isn’t supposed to change you as a person.  It seems rude, somehow, to assume that someone with significant physical challenges differs from able-bodied people in matters beyond the simply practical, and offensive to suggest that they are really other, that they see the world differently.

But they are.  Different.  They are different in the same way as all of us, shaped by their experiences—and those experiences, especially in the 1930s and 40s, bore little resemblance to those of the unafflicted (to use a contemporary term).  They spent weeks in dark isolation wards, separated from their families, foggy from the brain infection and largely ignored by their doctors.  Inpatient rehabilitation lasted months or years, sometimes in gentle kind places, sometimes in militant, miserable ones.  Some endured dozens of surgeries; others were subjected to draconian therapy regimens that involved months in body casts or strapped in rigid splints.  All went through unspeakable pain—physical pain, and the pain of loss, which feels no less agonizing, and hardly less concrete.

media-1.phpThis disease laid people bare, shaken and shattered, and even those who beat the odds to walk back into the world unencumbered had to find a way to rebuild from the trauma.  Some changed for the worse; others, in the end, perhaps for the better.  Who each person became depended on who they were to begin with, and how they were treated, and the people they met on their strange and sometimes devastating journey.  And even at the time the public gawked like spectators at a zoo, trying desperately to wrap their heads around the horror, unable to see it the way the survivors themselves did: as everyday, dogged reality, sometimes inspiring, sometimes bleak, never predictable.

By the sixties, just a few short years after the advent of Jonas Salk’s famous vaccine, we’d forgotten any of this had ever happened.

I have written and rewritten this segment a thousand times, because I don’t want to fall prey to the reductionism you see in so many other dealings with the topic.  Because I want you to hear this story the way that I do, see these people the way they really were.  I want to tell you what really happened, insofar as I can find that out, not tell a story about what happened: the things that transpired here form neither a comforting narrative of triumph nor a sensationalized story of pain.  It’s just a story, about people, and about those who tried to take care of them.  It’s a story I think is worth remembering.  Something that still informs our national attitude of determination and bravado, for better or for worse.  Something I think we shouldn’t lose sight of.

But we have lost sight: of the tremendous impact of this part of our history, and the fact that it happened at all.  I read an interview once, in a remarkable compilation of first-person accounts called Polio’s Legacy, in which someone recalled being asked by younger neighbors if his children were “okay;” presumably they thought that the “polio” that kept him in leg braces was hereditary, or somehow still catching.

We haven’t forgotten polio simply because we have the luxury of ignorance, or because the problem is obsolete.  We forgot because we pushed it from our minds.  We beat it, this terrible thing that stalked us for so many years, and so why should we acknowledge it?  Why dwell on a nightmare after the waking?

It’s not accurate, exactly, to say we don’t talk about polio at all, or that people don’t think it’s important.  Dozens of books have been written about it; David Oshinsky’s Polio: An American Story won a Pulitzer prize when it came out in 2005.  We still talk about the disease plenty when we discuss the FDR presidency, or the ongoing vaccination debate (ask me how I feel about that sometime).  But when we look back on it as a historical phenomenon, what people focus on is the race for a cure through prevention, our victory over polio, or else the sheer faceless horror of the disease.  They rack up numbers of cases and children left helpless and paralyzed; they talk about the economic burden of the disease, or the hysteria it engendered.  They talk about polio as a phenomenon.  They talk about polio as an all-consuming fear.

They don’t talk about polio as something that happened to people.  We lose track of our humanity, in those breathless chronologies, maybe because we are ignorant, or maybe because we’re afraid.

It’s not much different than it was at the time, when polio was still a scourge to be dreaded, and smiling poster children solicited donations on every corner while the survivors themselves stayed home, cast out for the unavoidable reality of their braces and canes, and the fact that they didn’t always grin.  It’s easier to think about the macrocosm of war than about each individual battle.  Wars can be won; it’s in the trenches that we pay the price for victory, and unless you’ve been drafted, it’s an easy fact to overlook.  Behind each clinical sentence in a history book, or the bulleted list of symptoms on the Mayo Clinic web site, is, or was, a human being.

Teens and young adults were uniquely suceptible to paralysis, a pretty widely distributed fact, but the fact itself doesn’t address the sixteen-year-old who hugged her limp knees in bed, wondering if anyone would ever want to marry her, wondering if she’d ever make love.  Discussions of the extreme (but ineffective) isolation measures never speak specifically of the parents who circled the outsides of hospitals until they found their child’s window, because during an epidemic a knock and a wave was as close as they could get.  Knowing how much money the March of Dimes spent on splints doesn’t give us a chance to ask how they made the boy who laid for months with his arms at right angles feel.  Iron lungs had children in them—children who sometimes dressed them up in Halloween costumes.

Every single time I talk about my project, this project, each time I reach out to shake a new hand, I hear another story.  It pours out of people like something pressurized too long: My dad had polio, they’ll say.  Or My grandmother.  Their eyes go wide, and a weight lifts as they soften, like it’s good to say it, like it’s a relief to talk to someone who knows what they’re talking about.  The boy down the street was in an iron lung.

I had polio, they say, sometimes, quietly.  And then, always, some variation on Wow, because even—maybe especially—for the people I’d never have guessed that about, the ones who seem physically totally intact, the reminder has its own gravity.  Its own power to turn back the clock. 

There are plenty of things about myself I don’t usually share; some of them happened an awfully long time ago, long enough that hardly anyone knows.  And every single time I get close to someone, there comes a tipping point in the conversation, a threshold where I want to say it, but I don’t, usually, because it isn’t really relevant, except in that space inside my head that begs for a voice.  Just because you can’t see it doesn’t mean it didn’t change me.  Just because it doesn’t “matter” to whatever we’re discussing right now doesn’t mean there isn’t some part of me that wants you to know.

I feel incredibly lucky to hear those stories from others.  To be the one entrusted with them, at least for that fleeting moment.  Maybe people don’t talk about it because they imagine it won’t interest anyone, or because they’re still afraid of censure, or maybe it just doesn’t occur to them, in the rush and reality of everyday life.  But there is a void there.  There is something left unsaid.  I see it almost every day.  It’s a void I don’t think anyone else is trying to fill.

It’s a void that was filled at the time mostly by a remarkable and enigmatic woman named Elizabeth Kenny.  A nurse from the rural Australian bushlands, her unique regimen of treatment for the disease not only revolutionized the field of physical therapy but changed her patients forever, in a way that entirely transcended their mobility.  Conventional wisdom about polio held that paralysis was absolute, and that exercise was dangerous, with passivity the only possible source of redemption.  She rejected that worldview completely, insisting that not all weakness had to be permanent, that helpless submission to the medical machine wasn’t necessarily the appropriate response to the situation, and that imperfection shouldn’t bring with it a secret shame—and her method worked beautifully.  Doctors hated her.  Patients loved her.  And she didn’t seem much fussed either way.

EKI Dedication

Back in 1940, when Kenny first stepped onto U.S. soil, she was entering into a society that liked its brave, idealized concept of polio survivors a lot better than it liked the real thing.  The medical institution was filled to bursting with doctors who felt existentially threatened, unable to cope with their helplessness in the face of the disease.  They treated their patients as collections of muscle-testing results and constellations of symptoms, because to acknowledge their humanity would mean acknowledging their suffering.  And acknowledging their suffering would mean acknowledging they’d failed.  So they pushed them harder, straightened their twisted limbs with ever-increasing violence, so that they could be closer to normal, and the tension could fade from the air.

For nurse Kenny the very idea of allowing those kinds of metrics to define a patient, a person, was anathema.  She, too, saw the intrinsic humanity in her patients, and she wanted for them true recovery, rather than some objective standard of performance.  She was more interested in how her patients felt than in how far they could or couldn’t walk.  And she knew, that to ever get better—whether better meant walking unassisted, or better meant self-acceptance—honesty and wholeness, rather than some fragmented medical identity, was what was required.  Her therapeutic technique was what earned her recovery rates more than twice the average of the day.  But it was her therapeutic philosophy that left her patients filled with admiration rather than fear, and inner peace instead of self-reproach.

It wasn’t a person’s life you feared for when they came down with polio—it was their ability to live.  And even if she couldn’t repair a broken body every time, it was in assuaging this fear that Elizabeth Kenny healed.  It’s a tremendous story of persistence and triumph and hope, and a terrible one, too, of prejudice and darkness and inalterable loss.  It’s a story that has more to do with the scars you can’t see than the ones that you can.  And I’m in the process of writing a book about it, and her, and about the Minneapolis clinic where she did her best work—the book this site is intended to accompany.

I’m not the most logical steward of this story.  I’m twenty-one years old, born the year the Kenny Institute celebrated its fiftieth anniversary.  I run marathons and listen to cringeworthy pop music; my laptop is grafted to me like a third limb, and my hair is sometimes dyed firetruck red.  But I’ve been fascinated by this story for a long time, and I believe it desperately needs to be told.  So I’m taking comfort in this: Elizabeth Kenny—almost six feet tall, self-taught, and frequently lacking in social graces—was not an especially logical hero.

I can’t wait to tell you more.

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