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A Louder Silence

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Names, Phases

27 Thursday Jun 2013

Posted by victoria in Kenny Institute, Society

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bill bell, me, present day, rehabilitation, society

“‘Bill’ Stanley William / Willis Bell (??)”

That name is written not far beneath Elizabeth Kenny’s, in my roster of important figures in this absurdly crowded story.  So far, I’ve talked only about Kenny herself, and about her patients—and, in my last post, about myself—but there are dozens, if not hundreds, of others who figure into this story.  They are nearly as vibrant and dynamic as its central character, but were afforded nowhere near as much press coverage, and finding ways to get to know them has proven both delightful and infuriating.  

This story is vast, almost beyond my ability to see it all at once, force a wide and ever-changing vista into a single frame.  It’s yet another part of what I love about it: its enormity, and the delight I take in the knowledge that each one of the many thousands of people who passed through the Kenny Institute, for a week or a month or a year, came away with a different impression of what the place was and exactly who the people were that lived and worked there. 

Because it’s not what a thing really is that we see, that we remember.  It’s what it means to us. 

The physical therapist with that heavily annotated name is one of my favorites: one of the most interesting, and so far one of the most enigmatic.  It isn’t just that the names on his paperwork don’t match up (though they don’t, always, with William/Willis the main point of contention).  It’s that he seems to have used different names with different people—and it’s that one small quirk that has me curiously transfixed.

It was while I was talking to my interviewee Russell, who fell ill in the summer of 1940, that I figured this out: I’d asked him about the people who cared for him other than Kenny, hoping to draw out some of the names I already knew.  “[S]he had one male and one female nurse that was on her staff, Australians,” he said, but he couldn’t remember their names.

The girl was probably Mary, I told him, or else Valerie: Kenny’s adopted daughter and protégé, and her favorite physical therapist, respectively, both of whom accompanied her from Australia.  The boy’s name was almost certainly Bill, another therapist she’d trained—someone I’d heard stories about, who all of the kids seemed to adore.  I’d read a lot about Bill, and I was confident that this was Russell’s guy.  Did any of that sound familiar? I asked.

It didn’t.  Not then.  But a few minutes later, he told me about this “orderly” he’d worked with almost constantly, someone who helped him with his treatments and carried out his exercises.  Stan, he said, thoughtlessly.  Sliding out, the way things do, from dark corners of memory too cluttered to retrieve anything from when you rifle through them in the light.

And something went off in my head.

Stan.  Stanley?  Stanley William?  Bill?

I’d read people’s recollections about the somewhat unfortunately named Bill Bell, but never any—at least, none that I recall—about Stan.  And yet it’s obvious that the man Russell spoke of with such mischievous warmth in his voice was the same one who’d watched over so many others in their most fragile and brilliant moments: outgoing and deadpan and subversively indulgent, with the same Aussie drawl Kenny had. 

Stanley et cetera Bell was one of the Kenny Institute’s first staff members—he started working for Kenny in the States in 1940, and the Institute wasn’t dedicated until December of 1942—and to all appearances one of its most beloved.  Kenny summoned him from Australia the instant she was ensconced in Minneapolis; she had trained him in physical therapy at a clinic she ran in Queensland, and the two had worked closely together for his entire career to date.  As apparently skilled and authoritative as anyone else on Kenny’s staff, Bill/Stan also had a bit of a “good cop” reputation, contrasting with the women’s more severely expressed expectations.  “Stan and I got along like a million bucks,” Russell told me, grinning, and it was clear that to a lost, lonely kid looking for guidance, that meant everything.

packer_blogThe Kenny Institute, as it was in the 1940s, was, and still sometimes is, accused of being a “cult of personality”—but no hospital serving nearly a hundred people as long-term inpatients, and two or three times that during certain epidemic swells, could operate on the strength of a single individual, no matter how formidable she might have been.  Sister Kenny’s ethos permeated the place, but it’s the auxiliary staff former patients recall most vividly: the people they saw every day, sometimes more than once.  (Sometimes an exasperatingly large number of times.)  The nurses.  The “packers” who swathed their bodies in hot wool blankets to ease their cramps.  And the therapists, who coaxed them so slowly and steadily back to life.  People who knew them better than they knew themselves, at least for that brief breath-held moment in time, who bore witness to their tears and shared in their triumphs, and were both the cause and the cure of their pain. 

It was the most intimate relationship many of them had ever had—not just the children, but, by all accounts, many of the adults as well.  It amazes me how openly Kenny patients talk about their doctors and therapists—not just in retrospect, but in things they wrote while they were still in the hospital, or shortly thereafter.  They seem to have talked to them just as candidly: without any of the frightened reverence I’m used to seeing in the face of such an authority gap, they tease and question them even as they look to them for guidance.  It’s respect, and well-earned, not intimidation.

It’s like I wrote in the last post: this is real life.  With all of the extraneous distraction, and all of the social nicety, stripped away.  If you didn’t have the luxury of hiding from it, it was good at least to have someone with whom to share, and these were the people they could trust.  And the patients—some of them, anyway, when they were ready—plunged into this highly unusual dynamic with an abandon and a sense of freedom they didn’t seem to feel anywhere else.  You weren’t supposed to talk about it—about polio, about your fears, about much of anything at all; recollections of interactions with family and friends frequently emanate squirming discomfort.  But this specific relationship, between the Kenny patients and their therapists, that you might expect to be so fraught with expectation and fear, is both ocean-deep and light as air.

And they entrance me, coming to life on these old and crinkled pages.  It’s uncanny, in a way, to come away with such a strong impression of an individual—not just the mysterious Mr. Bell, but so many of these people, the ones who show up all the time and the ones I’ve “met” just once or twice—without actually knowing anything about them.  I have a copy of a card with Bell’s credentials on it—but most of Kenny’s resume was faked, so I have a hard time believing his is wholly straightforward.  He spent some time in the military starting in 1945, but how that came about, and why, as far as I can tell, he never returned to the Institute, remains a mystery.  He was married, with at least two children, but I don’t know anything about his family besides that they existed.

academic credentials - bellThe only thing about Bill/Stan Bell I don’t have any trouble figuring out is why he was so thoroughly beloved.  The first story I ever read about him was relayed by a man named Robert Gurney, in an interview for the book Polio’s Legacy.  Robert called him Bill.  He called him Bill, and he spoke about the winter of 1940, and learning to walk again: seventeen years old at the time, Robert insisted he couldn’t do it, but his technician felt otherwise.  After a couple unsteady laps around the therapy table, Bill announced that Robert, with Bill’s help, was going to walk back to his room.  This plan seemed difficult to protest, so off they went, until one of Robert’s friends noticed him walking alone and called out congratulations; as it turned out, Bill had stopped to “[talk] to a couple of pretty nurses,” and Robert had inadvertently kept going without him.  As soon as he realized what had happened, Robert promptly wavered and fell, but he tells it as a deeply happy story, infused with nostalgia, tinged with gratitude.

“Henry [the friend] was laughing so hard he was crying,” Gurney says, “and I was just sitting on the floor laughing.  But from then on, I walked.”

The interview is eight or nine pages long, and only one of them deals with this incident, much less Bill himself.  But I came away from those bare sentences with a distinct impression of who this person was and how he thought (though I still can’t decide whether the detour to chat up the nurses was an actual lark or just a ruse).  I feel like that’s the opposite of what usually happens, like I’m getting to know these people inside out: it’s so easy to accumulate semantic details about a person—what do you do, where are you from, where’d you go to school?—and so hard to actually learn anything about who they are.  But these people come across as so raw, so earnest, so inside-out, that it’s hard not to see them right away.  You see them in their letters, in their memos, in the stories that others tell about them, so enthusiastic and conspiratorial: the way they really were, in the day-in and day-out of a job both unforgiving and unfathomably rewarding.

That’s why I’m so curious about the name change.  About why Russell talks about Stan, and Robert reminisces about Bill, when they met him the very same summer, a span of time in which you expect there to be a united front.  Maybe it’s an odd thing to have latched onto so tightly, and with such insistent curiosity.  But names have a literally mythological power, and changing them is more than just semantic, because your name tells you—you, not just the rest of the world—so very much about who you are.  You can be a different person, with a different name.  Even if they both belong to you, and neither one is a “disguise.”

I know because I changed my name, a little less than a year ago, one little piecemeal introduction at a time, from something that merely belonged to me to something that was mine.  I’d been Tori since I was born, an abbreviation of a given name I claimed to hate, and that even my parents never meant to call me aloud: too regal, too stuffy.  I was so stubborn about it that it says Tori on my university diploma.  But about a year ago, with the world swirling around me, I started wondering if that was the person I felt like—or the person I wanted to be.  I started wondering about Tori on the cover of a book.  And then, one day, with a small and instantaneous thrill of transgression: Hi.  I’m Victoria.

I love this “new” name.  Victoria is who I chose to be.  And there are many people in my life now who know me only that way: when my yoga teacher Matt calls me out in class, it is Victoria he gently chides; Victoria is the name at the top of this page.  It startles me when I swipe my loyalty card at the chain café I’ve eaten at practically every other day since I was a teenager, and when my order comes up they call out, “Tori?”  And yet, sometimes, for reasons I can’t even fathom, a department store salesperson will ask my name, and I’ll chirp the shorter version—not because I forget, for a moment, but because it feels more appropriate.  Even though most of the time I cringe, unfairly, when I see that worn-out word, the old name, a relic of a person I’m relieved to no longer be. 

Sometimes a name is just a name.  But sometimes it’s a threshold.

So that’s a moment—a pair of them, in fact—I wish I somehow could have witnessed: whatever the space was between Stan/Bill’s two introductions, and whatever spontaneous impulse triggered the change.  Maybe different people seemed to need different things.  Maybe different contexts brought different levels of comfort.  Maybe he was still trying to figure out who he was going to be in the U.S., and whether that was any different from the person he had been back in Australia.  Maybe it’s nothing.  Maybe he went by both names as a matter of course, and the kids he worked with picked their favorite as shorthand.  Maybe one of the boys whose stories I’ve mentioned couldn’t remember at all, and paperwork or an interested family member supplied a name different from the one he used every day.  Or maybe there was somebody else named Bill, or Stan, on one of those wards, and that someone was unusually protective of his name.

blog_picnicI probably won’t ever know.  Not that particular detail, so specific, and so likely inconsequential, no matter how much I want to read into it.  I’ll keep gathering stories, the ones about Stan and the ones about Bill, and I’ll figure out the truth, if not about the name, then about the things that happened, and I’ll line them up for you: in the proper order, and with proper annotation, and with as little of the conjecture I’m making right now as possible.  But the writing of this book is about more than just that, and that’s one of the things I’ve been grappling with over the last few weeks, writing and thinking such personal things.

I have no idea where I heard this story (yet another damning piece of evidence against my bibliographic skills, which before I started this project left very much to be desired), but it bears repeating anyway.  Whether this is a yarn about a real place or an urban legend, a kind of artist’s parable, I don’t know, but it goes like this: there was once a little bookstore with only two sections.  Over one cluster of shelves hung a sign that read Facts—nonfiction.  And over the other?  Truth.  The fiction section.

When I first heard that little tale, fiction was the only thing I wrote—at least, the only thing I wrote of my own volition, and the only writing I shared with others that didn’t come back with a letter grade attached.  I loved the story then, and I love it still, but it sounds different to me, after all these years, because my situation is different now.  I write both.  And I think about that anecdote now, and I wonder: why choose just one?

There are things in my novel that reference actual reality, but I didn’t put them there because I wanted anyone to learn anything.  Fiction sits on the side of truth, at least when it’s doing its job as it should, and no one asks from it anything more than that—which is exactly as it ought to be.  But nonfiction, that’s a different animal.  There’s an implied derision in that simple word: facts.  It conjures a sterility we remember from textbooks, and it’s a legitimate criticism: I am deeply buried in facts, trying to wade through the existing literature on the history of polio, and it can be stifling.  I love to read the scientific papers of the time, which have a sort of sly elegance and cleverness the modern journals I studied in college totally lack, but the secondary sources, the academic tomes, are dry and impersonal in a way that feels to me almost heart-wrenching. 

It’s important to provide accurate reportage, and a worthy accounting of the truth.  But I love this story because it’s about people.  People, and their lives and hearts and minds.  People’s families, people’s memories, people’s heritage and hopes.  Writers of nonfiction shy from those things, too often.  Hoping, perhaps, that people will be able to extract the appropriate feelings from an endlessly unspooling reel of names, dates, and featureless interactions, or perhaps just afraid of accusations of bias or inaccuracy.  But that’s the one thing the little bookstore parable has right: facts aren’t, intrinsically, connected to truth.  The people I’m writing about deserve better than to be reduced to sweeping generalizations and gut-wrenchingly vague statistics.  And they also deserve for someone to tell their stories correctly.

That’s why I look for those signatures, on Bill Stanley Willis William Bell’s letters, and why I pore so carefully over the accounts of those he worked with.  Because I think that facts can tell us the truth, if we understand that there’s more there to speak than mere procedure.  I love the way the whole world talks to itself: the way the specificity of these anecdotes becomes, always, universal, and the way semantic details can reveal intimate and tender emotions.  It’s curiosity about people that leads me to recognize the gaps in my factual, biographical knowledge.  It’s because I want explanations for the events and quotations and little quirks of behavior that allowed this thing, this crazy improbability that was the Kenny Institute, to happen the way that it did.  And the discoveries I’ve made that way are what convinces me that even good math can add up to something greater than the sum of its parts.

That this story is so emotionally clear and so factually opaque is both its glory and its misery, and I’ve been sledgehammered by that a dozen times since I’ve gotten to Minneapolis.  The folders and folders and folders of misfiled letters and papers shuffled like cards in a poker shoe over at the Historical Society are heart-stoppingly overwhelming, and the photographs and jokey newsletters written by Kenny’s patients feel like coming up for air.  But I fight through the one to shore up the other.  Because—like I’ve said before—I want people to see this thing the way that I do, and I know that means giving you something to latch onto that makes sense.  Something that’s real.  Something that’s true.

However you choose to interpret that, and whatever name it goes by.

Standing Tall

25 Saturday May 2013

Posted by victoria in Introduction, Society

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introduction, rehabilitation, society

She is grim and anxious, captured in this set of black-and-white photographs.  Her small body rigid, she stands barely balanced on a pair of short forearm crutches, mouth set and sharp as a razor blade.  You can see how much she needs this step, and how hard her heart must be beating, keeping time with the shaking of her weak, tangled muscles as she moves.  Her therapist’s hands are light on her slender legs, her ankles and calves, moving them forward one at a time, showing her where to go, making the effort she is still too wrung out to manage by herself.  Her short hair is neatly braided, pretty and incongruously ordinary against the back of her neck.  She’s maybe eight years old, or a little older than that, and she looks exhausted already, holding the weight of the world in her small hands, eyes fixed straight ahead.

And then something changes.  I don’t know what happened in that moment, in the flicker of time between those shutter flashes (if shutters, or flashes, were even things cameras had back then).  I wish I could have been there, to see exactly what elapsed between the fourth and fifth snapshots.  But whatever it was—some whispered word of encouragement, or some feeling of triumphant familiarity—looking at that last picture is like watching the sun come up.  Standing there, laughing, she is radiant on those crutches, this skinny grade-school girl.  Elfriede Kohler is the happiest person in the world.

The day I saw that picture was the day I started to understand.  What I was really looking at, and what someday I would be writing about, and what it would come to mean, and the ways that it would change me.  Those photographs are the culmination of a lengthy scrapbook, lovingly assembled by someone at the clinic where Elfriede was treated, chronicling her progress from the depths of illness to partial recovery and discharge.  The brown kraft paper is rippled and torn, and pictures have fallen out here and there, leaving tantalizing holes in the story that the handwritten captions don’t quite manage to fill.

And I sat there in the library, feeling the weight of this book in my lap, as fragile and enduring as the girl it preserves, and I knew I never wanted to give it back.  Not just because the feelings were so profound.  Because—at least in part—I was starting to grasp just how incredibly rare they were.

Moments like Elfriede’s don’t come along very often, in these stories, but even when they do, they sit far down the line from the place we left off.  The illness was a dark, purgatorial space, after the before but just before the after, and no matter who you were, and what you might eventually achieve, the earliest forays into this new, unstable life were as terrible as anything that preceded them.

Polio’s paralysis is strange and unpredictable: its boundaries are fuzzy, its consequences vague, and, at least at the beginning, its permanence unclear.  Weakness powerful enough to put someone in an iron lung could abate entirely within weeks, but someone else’s comparatively inconsequential limp might never get better at all.  The effects are hardly ever symmetrical, nor are they especially well-contained: one side of the body is almost always much more heavily involved than the other, and even devastated limbs usually have some muscles that still work.

Even more uncannily, for all the glittering pins and needles of the illness itself, once the infection clears, sensation is rarely ever affected.  So much of the world stays intact: the feel of the damp sheets against your body, the nurses’ rough handling of your tight, aching shoulders, the bright-lit pain that still pulses through your body, random and blinding as lens flare.  It’s only your ability to interact with it that changes.

It doesn’t make sense, the straining that happens inside you, and the cruel disconnect between what you feel or imagine to be possible, and what you find really is.  Some people talk about a sense of disembodiment, like that part they can still sense but can no longer command or comprehend doesn’t even belong to them anymore.  More often, though, in recounting their experiences, people don’t talk about it at all.  They are lying desperately ill in the contagion ward, and then they are in therapy, transferred somewhere else to reboot, to get better.  The transition is so fast and so disorienting, and the things on either side of it so bold, that it doesn’t even stand out.

Every so often, someone will bring it up, often a little dreamily, like they’re only just realizing it’s true: I guess that was the last time I walked on my own.

Knowing seems to bring them comfort.

It was clear right away that something was terribly, terribly wrong, but it often took a long time to figure out just what it was.  The moment it was possible to endure being touched again, the doctors swarmed back in—more often than not to contain you, compress together all your pain and confusion and complicated feelings and literally bind them to your body.  Not just weeks but months of recovery were spent lying strapped down in bed, in an attempt to prevent further damage to weakened muscles.  Infants were put into body casts; older children and adults found themselves racked on “Bradford frames,” traction-like devices that held them stretched out, often with their arms at right angles.

“The immobilization is maintained for a period of eight weeks, aBradfordFrameHSC-AR1937-800t which time a second muscle test is made….  If exceptional improvement is shown, this immobilization…is repeated,” a prominent 1941 textbook, Dr. Philip Lewin’s Infantile Paralysis, instructed.  These eight-week periods were to be repeated indefinitely, but were “seldom continued for more than six to eight months.”

As if that’s no time at all.  As if everyone old enough to understand what was happening to them didn’t use that time to think about what would become of them after all this was over.  Didn’t lie in bed worried and helpless, and knowing all too well what would happen if it didn’t work.  If they didn’t get better.

People don’t talk about the transition, and those early days and weeks of recovery.  But they talk about the extremes to which they later went to fight for normalcy.  They talk about being haunted by a stigma they were desperately trying to avoid.

imgdisability_04lg

There’s a poster that’s frequently reprinted in historical retrospectives of the “polio years;” I first saw it in a 2005 exhibition at the Smithsonian Museum of American History in Washington D.C.  Created for a vaccination awareness campaign in 1956—the second summer the shot was available—it shows two different pictures, dramatically-split screened by contrasting backgrounds.  On the right stands a smiling grade-school girl in tight buns that bear a passing resemblance to Princess Leia’s, balanced awkwardly on wooden crutches, the angle of her slender arms calibrated to imply even more deformity than she seems to suffer.  On the left, two able-bodied children stride confidently through a field, wholesome hands intertwined.

This, the caption reads, above the happy siblings.  Not this, above the bravely grinning girl.  Vaccinate your family now

This.  Not this.  This.  Not this.

This was the world the many thousands of people paralyzed annually by the disease in the U.S. alone had to live in.

Every single depiction of polio, every warning against it, characterizes the disease as a hideous specter, sometimes literally so: in a film called The Crippler, produced by the March of Dimes, the illness moonlights as a grossly elongated shadow, looming darkly over unsuspecting homes.  Polio was horrifying, of course, and more than likely this visceral repulsion accomplished its objective: eliciting donations, raising awareness, and getting kids vaccinated, when that time came.  But in associating the illness with the grotesque, its victims were tainted that way, too.  As disgusting and contaminated, or else tragic and courageous, almost martyred, helpless young sacrifices to a noble cause.  We put these kids up on pedestals even as we shrank from them in terror.

Having polio no more made you brave than it made you broken.  It meant you were in the wrong place at the wrong time, that you shared the wrong ice cream cone or dove in the wrong swimming pool.  The poster child was a cultural fantasy, not a reflection of reality.

But how do you understand that, at four years old, or fourteen?  You’d seen those pictures, unless you’d been living under a rock since the day you were born.  You knew what it meant, to have had this happen to you.  And you knew that the only way to be okay again, to avoid being pitied or lionized, was to get better.  All the way better.  Even the kids in those posters knew it: “Help me walk again,” a picture of a child in a walker pled, and a happily skipping boy was triumphantly captioned, “Your dimes did this!”

Getting better became the only thing that mattered.  The only way to feel real again.  And not just getting better.  Getting well.

In the memthisformeoir Warm Springs, about her surgical rehabilitation at FDR’s famous polio hospital, Susan Richards Shreve recalls her younger brother asking if going in for reconstructive operations frightened her.

“I’m not scared,” she told him.  “The next time you see me, I’m going to be a different girl.”

“What kind of girl?” he asked her.

“A perfect one.”

It wasn’t just the specter of posters in shop windows and hyperbolic movie reels that made this seem so crucial.  It was the reality you lived, day in and day out, in most inpatient rehab facilities.  After the restraints finally came off, patients were often started on aggressive exercise regimes, hoping to strengthen them enough to get them back on their feet.  The goal, always, was sitting, standing, walking, no matter how much supportive bracing that required, or how much it might hurt.

rehab_groupThe acceleration was dizzyingly brutal: kept from doing anything for so long, now you were expected to do everything, and the goal wasn’t really to make you feel better.  It was to achieve something as close to normalcy as possible, no matter how strenuously your weakened body protested, and when inevitably you ran up against something you really couldn’t do, it felt like your fault.  Like you’d failed somehow.

And once those insurmountable roadblocks were found, the limits of your natural recovery defined—at least as far as the (misguided, but we’ll get to that) doctors were concerned—the next step certainly wasn’t acceptance.  At a time when fighting to win at any cost—not just in the battle against polio, but in nearly every circumstance, great or small—was not only virtuous but expected, acceptance felt synonymous with giving up.  Encouraging someone to come to terms with their disability was unthinkable: if the patients didn’t feel adequately distressed about how they were doing, what reason would they have to keep struggling?

The next step, instead, was surgery.  Surgery to fuse bones, to transplant tendons from functional muscles to paralyzed ones, to shave down joints unhinged by muscle cramps.  Dozens of surgeries, sometimes, stretched out over years, trying to account for growth, and the pernicious influence of time.  For the most part, these procedures were designed not to make the patient feel more comfortable, but to make her more conventionally functional, closer to “normal”—whether or not that was something she actually wanted, or that her weakened body could support.

Lest you think I’m being hyperbolic, or exaggerating the extent to which recovery alone restored legitimacy, I want to share some excerpts from a March of Dimes pamphlet meant to “help” affected teenagers cope with the aftermath of their illness.  There’s no date that I saw on this slender, seemingly innocuous document, but I’d bet anything it came from the mid-40s, with both fear and determination at their most histrionic peak.

“Everyone has problems to solve.  Some are easy.  Some are hard,” it begins, with an understatment that feels almost deadpan.  “When you are ill your problems are more difficult to solve, more annoying, and many times you do not know where to turn for help.”

Then the language turns from merely patronizing to aggressively fraught with expectation: “it is…the function of the National Foundation to help you win your way back to health.”  You and your family are “fighting to defeat the effects of the polio virus insofar as human skill and knowledge can do so”—and human skill and knowledge were held in high esteem at the time, with the country deep in the throes of new American exceptionalism, awestruck by unfathomable advances like the atomic bomb.

“If this little book does help you to ‘learn the score,’” the introduction concludes, “if it helps you become better able to conquer your polio and return to a full and happy life, it will have done everything we hoped it would do.”

There is no space, in that tone of enforced cheerfulness (which continues, blithely, through the rest of the booklet), for anyone whose recovery is less than triumphant. There are only winners and losers, without space left to to carve out a life in between—when life in between was most often the reality you confronted.  No doctor ever asked a child when enough was enough, or how she felt about what was happening to her.  They certainly never asked the darkest, and perhaps most crucial, question: Do you even want to get better?

walk_again

It seems like an absurd thing to ask, doesn’t it?  Of course you’d want to get better. There was nothing redeeming, hardly even anything tolerable, about this illegitimized existence, lost in the darkness of constant discomfort, at the mercy of a system you didn’t understand.  But what the doctors failed to understand was this: rehab felt like a kind of limbo, a probationary period, where the rules and privileges of normal life were suspended.  It was the place where you stayed while you waited to find out if your sentence would be commuted, and as long as you were there, everything else seemed far away.  More often than not, the “real world” these kids were supposed to be fighting to rejoin seemed like nothing but a cruelly impossible dream.

It’s hard to convince yourself to work toward a goal with such a narrow definition.  A difficult but attainable challenge is motivating.  But it’s hard to imagine enduring that sense of futility, day in and day out.  Lying in bed able to move just an arm, or a couple of toes, knowing that walking, that better, that normal, was the goal, made every incremental victory along the way seem less a triumph than an unbearable reminder of you how far you had to go.

Even if they couldn’t articulate it, there had to be some part of them that understood the paradox in which they were now unwillingly complicit.  If you couldn’t get better, phyiscally speaking, but you had to get better, in order to win back your legitimacy as a human being, your right to take up the same space and breathe the same air as other people without inspiring revulsion or reverence, then what were you supposed to do?  There had to be something you could do.

And there absolutely was: you could deny it.

Not that it had happened; that would have been absurd, not to mention impossible, for someone in a wheelchair, or encased in a body brace.  But you could refuse to acknowledge that it had affected you.  You might be in the chair, but the chair wasn’t a part of you.  You were normal.  It was your disobedient body that was the problem, and that didn’t really need to have anything to do with you.  This whole thing was merely a formality, some kind of terrible joke, and you would reenter the world determined to prove that the real you was better than this chair you sat in.

At the end of the day, in order to be seen “just as yourself,” people felt forced to deny a huge, and hugely formative, part of who they had become.  What had happened didn’t fit into anyone’s plan, or anyone’s image of what they wanted for themselves.  But to refuse to alter that image at all, and to make a perpetual enemy of the crutches that held you up or the fingers that drifted uselessly at your side, created problems all its own.  Insisting that you were unaffected, unchanged, un-limited, was an understandable reaction, but it was also a profoundly disingenuous one.  Whether it came of the work ethic instilled in therapy, or developed as a defense mechanism to cope with the world thereafter, relentlessly having something to prove drove polio survivors to be—statistically!—much more accomplished than their healthy compatriots.  But it also delayed, and in some cases denied, their ability to find peace.

I’m not implying that anyone failed, or that what anyone did was wrong: these attitudes were adaptive.  Patients developed the skills they needed to live in a world that felt hostile and warped, out of line with all of their possible realities.  They believed what their doctors and nurses and parents told them, and what kids don’t?  What person doesn’t, under sufficient duress, cling to anything said with enough confidence and certainty?  They needed a way out of the terrible place bad luck had landed them, and that way was better.  At any cost.  Better was a solid, straightforward goal.  And that was comforting.

But there was another way.

It’s hard to give up that one clear goal, with its easy answers about who you are supposed to be and what you ought to want, and embrace uncertainty instead.  It’s hard to accept things as they are, and keep picking your way across the river one rock at a time, turning with the currents of the water, neither frozen motionless in terror nor so desperate to push forward that the rapids sweep you in and pull you under.  Rushing through the process was as impossible, and trying as disastrous, as lying back passively and giving up.  It wasn’t just your “wholehearted cooperation and obedience when working with the physical therapist” (and doctors, nurses, and parents—again, according to the booklet) that made the difference.  It was your ability to cooperate with yourself, and thereby learn to navigate the actual reality you lived in, rather than the one other people said you did.

It’s why I love that picture of Elfriede so much.  What shines out through her eyes isn’t relief, or hope for the future, visions of what might come next.  She isn’t dreaming of barefoot running or high school dances, or even setting down the crutches to stand on her own.  She’s just happy.  She’s found her feet again, and it feels amazing, and as far as she is concerned—she, and her grinning therapist, who seems equally delighted—in that moment that is enough.  At that moment it’s everything.

That feeling—and the fact that it’s possible—is as rare and precious as her smile.  The human spirit is astonishing, and it’s no surprise that some managed to evade the limitations pressed upon them, and navigate these labyrinthine preconceptions to make their way on strength of spirit—and an enduring sense of self—rather than pure force of will.  There are plenty of beautiful stories scattered across the smooth, impassive surface of this seemingly unscalable edifice.  But nowhere do they cluster as tightly as they do around Elizabeth Kenny—the nurse I mentioned in my first post, the one this book I’m writing is about—and the Minneapolis clinic she presided over for twelve years.

It’s not Kenny, in the pictures of Elfriede, which were taken somewhere on the outskirts of Germany, sometime in the early 1940s.  But the young woman whose touch pulls the little girl forward into her moment of heart-stopping joy was a Kenny-trained therapist.  And I’ve seen enough to know that what this mysterious revolutionary imparted to her charges—the therapists she taught, and the patients she treated—was as much philosophy as technique.  And it came at a time when we all sorely needed a paradigm shift.

I’m looking forward to showing you around.

elfriede

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