Names, Phases

27 Thursday Jun 2013

Posted by victoria in Kenny Institute, Society

Tags

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.

The 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.

The 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.

I 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.

Second Homes, Second Acts

28 Tuesday May 2013

Posted by victoria in Introduction, Kenny Institute, Society

≈ 1 Comment

Tags

background, EKI, elizabeth kenny, introduction, narratives, society

There is a lot of amazing stuff, in the stack of ludicrously heavy filing boxes that make up the Minnesota Historical Society’s “Kenny Papers.” But one of the more arresting parts of the collection is a thick folder of letters, newer than most of the things housed there, and without their musty smell and air of fragility.

Some of the letters are written by hand, in the beautiful looping calligraphy kids don’t learn anymore; I certainly couldn’t replicate those effortless, soaring curves. Others are tapped on typewriters, or printed in erratic monospace font, spat out unceremoniously by early word processors. They come on paper of every imaginable color and size, some intricately folded, others not at all. There are short ones, barely a paragraph, and ones that seem to go on forever, and it’s obvious that none of them say anywhere near as much as they could. Some are creased razor-sharp, the lines so straight they seem to have been written across a ruler; others sprawl and squirm, thick paper rippled by moisture, the residue of sweaty hands or falling tears.

I’d swear that even after all this time–exactly as many years as I’ve been alive–some of them still carry a faint whiff of elegant perfume.

They’re letters written about the still-extant Sister Kenny Rehabilitation Institute on its 50th anniversary in 1992, when a prominent Minneapolis newspaper asked former patients to contribute their memories of the time they spent there. And the differences are semantic, because the content of every single one is the same. I’ve never seen the initial request, but it must have been restricted to the very earliest patients, from the forties and very early fifties, the ones who knew Sister Elizabeth Kenny personally. Or maybe they were simply the ones who felt moved to write in en masse.

The letters are incredibly, unreservedly warm, and to a one palpably grateful. These people, fifty years later, remembered their time at the Insitute—or “Kenny,” some of them called it, “my time at Kenny”—with nostalgia almost unto joy. The time they had spent as inpatients in that squat little building in the heart of Minneapolis was time they’d come to treasure. And they wanted, so exuberantly, so delightfully, to tell their stories. To explain how their brimming, happy lives had played out, and thank everyone involved, even though so much time had gone by that most of the Institute’s original staff had passed away.

It’s fantastic. There really isn’t any other word for it. I came to these things after months immersed in the kind of desperate material I spoke at length about in the last few posts, a world drenched in fear and viewed perpetually in the negative: with the deep pessimism of resignation, and in garish, otherworldly colors. I saw none of that here. And what I saw instead enchanted me.

Who in the world was this woman, I wanted to know, and what was so different about this place?

As it turns out…that depends very much on who you ask.

Even though I’ve been researching her story for upwards of a year now, I’m still trying to tease out fact from fiction, and half-truths from the ones so complete they’ve been embellished into legend. It’s one of those stories, the best kind: where the most hyperbolically ridiculous statements are the ones most likely to prove true, and the ordinary things, the ones that establish a simple, everyday rhythm of life, are the toughest to pin down.

The lives of extraordinary people aren’t so different from anyone else’s, day in and day out. But those aren’t the things people remember.

Born in 1880, Elizabeth Kenny grew up in rural Australia, part of a large, rambunctious family with a formidable number of children. Easily the most fearless and outgoing member of an already free-spirited group, when she broke her arm as a teenager, she convinced the doctor who set the bone to take her on as an apprentice. (Though she would later claim various nursing certifications, this may be the only supervised medical training she ever got.) After a couple of years spent working on and off for Dr. McDonnell, she ventured out on her own to serve as a “bush nurse.” It was somewhere in the depths of these years, making house calls on horseback to families who lived dozens of miles from anything approaching “civilization,” that she started treating polio cases.

The story of her very first encounter with the disease is a great one, and I won’t tell it here, at least not right now. But the crux of the story is contained in a single telegram sent by Kenny’s mentor, after the young, terrified nurse reached out for help.

“Infantile paralysis,” Dr. McDonnell told her. “No known cure. Do the best you can with the symptoms presenting themselves.”

And so Kenny did—and her young charge made a full recovery, along with the half-dozen others who fell ill in the outbreak. She had no idea what you were “supposed” to do with polio patients, or even what was assumed to be wrong with them. It’s a big leap, actually, from “this patient can’t move so well” to “this patient is paralyzed,” and in circumventing the conventional wisdom—not because she was rebelling against it, but because she didn’t know what it was—Kenny found loopholes and inconsistencies in that thinking that led her to an entirely different method of treatment. Among other things, gentle exercise took the place of immobilization, and intense heat therapy stood in for bizarre drug injections—and the results were spectacular. (I am being, here, intentionally vague; a further explanation of these competing treatments, and the way Kenny’s approaches to neurology and psychology intertwined, is in the pipeline.)

With a couple of brief detours into other endeavors, Kenny worked from that point forward rehabilitating people with disabilities who had been written off as hopeless—not just polio patients, but also kids with cerebral palsy and other neuromuscular disorders. As word of her method (and its effectiveness) spread, so did the controversy: she claimed to observe dramatically different symptoms than had been recorded by anyone else, the symptoms on which her method was based, and an air of self-righteous indignation started to gather around her.

One of my very favorite lines in her (spectacularly funny, and spectacularly fictionalized) first autobiography, published in 1943, tells you pretty much everything you need to know about her manner of interacting with others: “Some minds,” she says, “remain open long enough for the truth not only to enter but to pass on through by way of a ready exit without pausing anywhere along the route.”

This was not a clever aphorism devised to get a smile out of readers. It was a philosophy by which she lived, and if she thought you suffered that particular affliction, she was not shy about telling you so. A contemporary journalist might have called her the “Angel of the Outback,” but Elizabeth Kenny was hardly a saint. (Nor was she a nun, despite being widely known as “Sister” Kenny; that was a title bestowed upon decorated nurses in the Australian army, where she served during the First World War.)

Part of the reason I decided to do this project is the frequency with which people still try to discredit Kenny, on the rare occasions when the story is dragged out of the historical attic, and that modern prejudice is rooted in the ferocity of the original controversy. Doctors loathed her, almost to a one, because everything about her rankled—her gender, her lack of credentials, the fact that she said they were wrong—and when they rebuffed her, she pushed back with equal ferocity. She was right, obviously, and everybody else was not only wrong but also incredibly stupid. (This is a diplomatic strategy that tends not to further negotiations.)

It wasn’t until 1940 that she landed in the United States, and there’s some confusion about why she ended up here in the first place. To hear her tell it, she was sent by the Australian government and its public health counsel to spread her technique as a point of pride for her country; less generous accounts sometimes imply that they wanted very badly to get rid of her. But after unsuccessful presentations at hospitals in New York and Chicago, just as she was about to return to Australia, she met a duo of sympathetic doctors from the University of Minnesota hospital…and it was in Minneapolis that the other side of the story blossomed.

Kenny might have been combative with doctors (and, when necessary, politicians, the press, and her own staff). But to her patients, she really was something like a saint. Gentle and attentive, she was their constant defender from a system that didn’t take them any more seriously than it took her. They became co-conspirators, in a way, and it was an arrangement that seemed to strengthen everyone involved. Kenny didn’t have time for anybody’s—well, it’s not exactly a family-friendly word. But she always had time for her kids.

Russell Papenhausen, the gentleman I interviewed a few weeks back, who I’ve mentioned a couple of times, lights up when he talks about her. At age fourteen, he was one of her first patients in Minneapolis, treated before the Kenny Institute (her very own 80-bed hospital, founded in 1942) even existed. And he put it more simply, and with more authority, than any of my pretty words ever could.

“She was a marvelous woman,” he told me, breaking into a mischievous smile. “She put the fear of Christ in the grownups and nothing but love in the youngsters.”

This was the one time that the patients’ voices won out, and, almost overnight, the beleaguered nation fell in love. Everyone in a position of prominence during the height of the polio epidemics gathered around them many dozens of sycophants; Basil O’Connor, the (extremely reluctant) director of the March of Dimes, was lionized by many, chief among them President Roosevelt. But not many people had letters sent to them asking, in all seriousness, “Would you let me know when it would be practical for you to receive a 15 lb. ham?”

A reporter named Inez Robb wrote the following, after her first visit to the Institute, with the breathless lack of objectivity endemic to midcentury journalism:

When I went out to the institute, I went up to visit a patient in the big ward which houses 29 boys ranging in age from 6 to 16. When I came into the ward, I saw a sight that stopped me in my tracks. Two lively kids of seven were wrestling vigorously in a hospital bed. It was a rough and tumble scrap.

At that moment, the nurse reappeared.

“Tommy! Johnny!” she said authoritatively. “Stop that at once! Tommy, you know you are not allowed out of bed. Get back into your own this instant!”

The kids looked sheepish. Tommy, a beguiling imp with big black eyes, got back into his own bed.

“Kids have so much pep,” the nurse said. Kids with infantile paralysis with pep! With too much pep!

“It seems like a miracle,” I said helplessly.

Kenny hated the word miracle—because it embarrassed her, she always claimed, and because it wasn’t true; I suspect it had more to do with the fact that it gave God credit she would have preferred to keep for herself. But of course it seemed like a miracle. It seemed like a miracle to the uncountable, unfathomable number of parents who had been told their child would never walk again, and to the children who’d believed their lives were forfeit—but for very different reasons. In her baker’s dozen years in America, Kenny tiptoed, and sometimes blithely trampled, the vanishingly thin line between what society expected from a great healer of polio victims and the kind of compassionate care those people actually needed.

Kenny was beloved by the nation for the results she produced: the Kenny Institute’s recovery rate was vastly greater that of any other treatment facility’s—about three times higher than average. More of her kids walked; eventually some ran and jumped and fought for our country in the Second World War (including my new friend Russell). Few wore braces or endured the spinal curvature common among polio survivors; if they used crutches, they were the short forearm type known then as “Kenny sticks,” rather than the awkward underarm variety, the kind you were supposed to use when you broke an ankle, and which gained an extra sense of pathos in their permanence. The science, however controversial, was sound; the therapy worked. Kenny’s kids got better.

But her patients didn’t love her because she made them well. They loved her because—against all odds, in a situation just once removed from the fires of hell—she made them happy.

I think my favorite thing in the Kenny papers—more touching than the huge box of thank-you letters, more chaotically revealing than the hundreds of disorganized photographs—is a box of newsletters, crudely typewritten sheets the patients at the Institute put out at various intervals in the 40s and early 50s. They were sent out to kids’ families and circulated inside the clinic, blurry duplicates on brightly colored sheets of cardstock, rife with good-natured ribbing and inside jokes. The young writers gossip innocently about their therapists and doctors and nurses, gush about the photography classes they’re taking or the movies brought in for them to watch, speculate about what they’ll do when they get out, who they’ll be when they grow up. They tease with enthusiasm old friends who come back for outpatient visits, especially when their subpar performance in the checkup meant they’d have to come back for a kind of remedial stay.

Because, the authors declared, only half joking, they knew nobody ever really wanted to leave.

I find myself holding my breath while I read them, like suspending the present can take me back in time, or like if I wait long enough or attend closely enough I might be able to inhale the stale air, with its sweetly rancid scent of rambunctious kids at play. There’s plenty of irony in the Kenny Stretch, and more than a little dark humor, but hardly anywhere do you see a forced smile. Isn’t this such a weird, messed-up world we live in? they ask, unselfconscious, and wise beyond their years. Isn’t this awful? Aren’t we bizarre?

Yes. And gloriously so. Because their lives belonged to them, and them alone, and it’s clearer here than anywhere else. Nobody else got to decide how they felt, or what they were afraid of. They might have been far from home, stranded apart from everything they knew or understood, but this new world was one they were building themselves.

The Kenny Institute was no less of a microcosm than any other inpatient facility—more so, actually, with its tight restrictions on visitors, and conspiratorial sense of community—but it wasn’t a place where you waited for your life to start up again. It was a place where you celebrated the life you still had, the one you were living, because someday was far away, and you were still exuberantly breathing right now. Though she never stated it explicitly herself, it’s obvious that it wasn’t just Kenny’s therapeutic concept that differed from the norm. Her philosophy was wildly different, too, and its core postulate was this: that recovery wouldn’t happen unless you were deeply invested in it yourself, and that in order to be willing to sink such physical and emotional effort into an outcome that was ultimately so uncertain, you needed to value yourself right now.

Her patients had to understand what they were working for, and that that work was something they did for themselves. Not for some anonymous coalition of doctors who poked and prodded at your limbs and scribbled down incomprehensible numbers on a chart, who wouldn’t tell you if you failed. Not for parents who worried that a lingering disability meant giving up on everything they’d hoped for you in life—not to mention what the neighbors would say, or how the checkbook would balance. Not to keep up with siblings or friends or an amorphous notion of what it meant to have dignity.

And—perhaps most importantly—not even because Sister Kenny told you to. Sister Kenny was not afraid of telling you to, and in no uncertain terms, but—unlike pretty much everyone else in the rehab community, at least according to the patients whose accounts I’ve read—she wouldn’t make you do much of anything at all. If you couldn’t prioritize your own recovery, couldn’t take the initiative to focus on getting better—which meant deciding that getting better mattered, which in an uncertain world must have meant you mattered, at least enough to try—she knew she couldn’t force you to succeed, any more than those stubborn doctors could force her to shut up.

You couldn’t just choose to get better.

But you could choose to live.

Put even more simply: “back to normal” wasn’t under your control, or, however skilled her hands and gilded her reputation, Sister Kenny’s. Recovery depended on factors no doctor or therapist could possibly foresee, on the degree of stripping in the wires, on the strength and stubbornness of your body. But better—partly in the sense of performing “better,” to whatever degree you accomplished that, but also partly in the sense of feeling better, feeling safer, more whole—that was a choice. And it was one you had to make; no one one else could make it for you.

That kind of responsibility was terrifying, especially to kids coming out of hospitals where they’d been treated as all but inanimate. But it taught them to stand up straight—in more ways than one—without feeling like they were being puppeteered. Not everybody remembers the Kenny Institute as a wonderful place to be, and it wasn’t an unconditional blessing for anyone. The reality of this situation was impossible to ignore—even if it was, eventually, possible to escape—and patients were asked to face it head-on far more often under Sister Kenny’s care than at most other facilities. The physical and psychological demands she placed on children widely believed to be both incredibly fragile and uselessly damaged were enormous. But those expectations were also an endorsement of personhood, and a gesture of respect, and for even the youngest of her patients, those confidences were transformative.

“You were lucky,” Russell’s wife told him, at the end of our second interview, after we’d fallen silent, exhausted, companionably sharing a plate of homemade cookies she’d brought.

He looked up, quizzical, in the middle of a bite.

“Not lucky to have polio,” Andree amended, waving a hand. “But lucky she came along when you did.”

It was exactly the same sentiment expressed by the wire-service reporter I quoted earlier, in a different, later piece: the children of Minneapolis, at that particular juncture of history, were the “luckiest in the world.”

Not because they were safe; nobody in the world was that, in the midforties, from polio or anything else. Not because there was nothing horrifying about their world, or because that world was free from danger. Because they had the thing that we all so desperately need, and that so much of the rest of the country at that point lacked.

They had hope. And more than hope, they had agency: the courage to find their own voice, and the fortitude to know that the only way to keep their illness from defining them was to write that definition themselves, before anyone else had a chance.

This is the story I’m telling. And this is “A Louder Silence”: the embrace of volume, and clamorous voice, in the midst of a world determined to strip away all the noise. The chattering static of undisguised reality, and the way it starts to sound like music, if you tilt your head just exactly the right way. And the other kind of silence, lurking underneath such fearless self-expression: the ability to sit quietly inside yourself, to find some kind of peace, without needing to thrash away at endless, anxious insecurities. To shout with joy, rather than defiance.

Of course, it’s not always that easy. It’s probably never as easy as I just made it sound. But it was possible. It was beautiful. And this silence deserves to be amplified.

Welcome home.

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, at 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.

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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 memoir 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.

The 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?

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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.

A Louder Silence

~ Victoria Borland vs. the 20th Century

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Names, Phases

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Standing Tall