NPR's Jason Beaubien just returned from Sierra Leone, which along with Guinea and Liberia is suffering from the worst ever Ebola outbreak.
Polio has been a large part of author Gail Caldwell’s life, ever since she contracted the disease at the age of six months.
Though she was eventually able to walk, she couldn’t jump rope or play basketball. But Caldwell was able to swim, row and establish a distinguished career as a writer.
Throughout her life though, Caldwell walked with a limp. Along with the medical professionals she consulted, Caldwell attributed the often severe pain she experienced to polio. She considered it a chronic condition that couldn’t be treated.
But in her late 50s, Gail’s symptoms were so pronounced that friends urged her to seek a new opinion. The doctor she saw ordered an x-ray, and as Caldwell tells Here & Now’s Robin Young, “he called me as I was leaving my house and said ‘well no wonder you’re in so much pain, you have no hip left.’”
The doctor also gave Gail the news that surgery could help her pain, as well as her limp. Gail Caldwell’s new memoir “New Life, No Instructions“ tells the story of what it was like to change the preconceptions she’d had about her life and literally learn to walk again.
By Gail Caldwell
My first tip-off that the world had shifted was that the dogs looked lower to the ground. I dismissed the perception as a visual misread: Because I was on crutches and couldn’t bend down to touch them, of course they would seem farther away. Then a friend came to visit, a striking woman whom I’d always considered tall. She was standing across the living room and I was smiling, happy to have her there, and I thought, Tink is small! And I never realized it before.
The fact is that Tink is about my size, but until that day I had looked up to her in more ways than one. I was just home from five days at New England Baptist Hospital, where the chief of joint reconstruction had built me a new hip and lengthened my right leg by five-eighths of an inch. The measurement sounds deceptively slight, but then pi, unexplained, doesn’t mean much, either. What the extended hip bought me was about two inches of additional height, because I was no longer bending forward in pain. It gave my leg something immeasurable: an ability to reach the ground, and the chance and anatomical equipment to walk right for the first time in my life.
Almost as dramatic, at least in the beginning, was the re-orientation of my physical self in space. My perspective had been jolted to the point that trees and cars and other markers of street life felt closer to me, within reach in a way they hadn’t before. I could sense the effort involved in making these neural adjustments: In a simple movement like a step forward, particularly outside, there would be a lurch of visual confusion, then acceptance. It happened quickly and brilliantly, and my comprehending it changed everything: What had seemed to be mere dizziness was in fact the brain’s ballet.
These were transient phenomena, the brain being a nimble choreographer of time and space. Within a few weeks I would be accustomed to the additional height and leg length; our bodies, perfect feats of design, respond to what is in front of them, usually without even bothering to let us know. But the dance I found myself doing with the physical world in the first few days and weeks after surgery signaled something larger, more long-lasting, that I would have to learn and relearn in the following year: the notion that life has an agency, some will and forward motion, greater than one’s own wish or intention. The force that through the green fuse drives the flower, Dylan Thomas called it. The idea that the whole blessed shebang doesn’t have to be a free fall after all.
I caught polio when I was six months old, in 1951, during one of the last years of the U.S. epidemic, before the vaccines. The virus, which destroys neurons, can lead to full or partial permanent paralysis; it affected the muscles in my right leg, and I didn’t walk until I was past the age of two. Still, the mark on my family’s door was relatively faint: no March of Dimes crutches or iron lung, just a faltering leg that often went unnoticed. The fact of the disease— important but hardly central—had long been incorporated into my shorthand self-description: writer, grew up in Texas, slight limp from polio. Part of the story I’d told myself all my life was that polio had made me a fighter—that I was hell-bent on being strong because of it—and that much was still true. But in the past few years, within the joys and demands of raising a young dog, I had begun to experience pain and lameness I’d never known before. The mystery of this decline cast a shroud of defeat over what I feared lay ahead. It seemed that the aftereffects of the disease had reemerged, ghostly and conniving, like a stalker who’d never left town.
And then: A standard X-ray, ordered probably fifteen years after it was called for, revealed that the scaffolding of my hip was a junkyard of bone. However compromised my leg had been by polio, muscles can’t work without a structure to hold them up. That I had been walking around at all, I was told, was astounding—and a lot of my recent decline could be addressed by one of the most common surgeries in modern medicine. The rest—the retraining and possible strengthening of a rebuilt leg—would be up to me.
What do you do when the story changes in midlife? When a tale you have told yourself turns out to be a little untrue, just enough to throw the world off-kilter? It’s like leaving the train at the wrong stop: You are still you, but in a new place, there by accident or grace, and you will need your wits about you to proceed.
Excerpted from the book NEW LIFE, NO INSTRUCTIONS by Gail Caldwell. Copyright © 2014 by Gail Caldwell. Excerpted by permission of Random House, a division of Random House, Inc. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
ROBIN YOUNG, HOST:
Question for you: What if the story you always told yourself about yourself suddenly changed? Think about that for a second. Something about you that defines you, even, but suddenly, it's just not true. That's what happened to writer Gail Caldwell. She came down with polio when she was six months old, losing a critical one-and-a-half inches off one leg length. Like a table that was always a little off balance, she couldn't jump rope or play basketball, but she could swim and row, and she could write, earning a Pulitzer for distinguished criticism as book reviewer for the Boston Globe.
She had a slight limp. But in her late forties, early fifties, it increased, and she was in terrible pain.
GAIL CALDWELL: The fact of the disease - important, but hardly central - had long been incorporated into my shorthand self-description: writer, grew up in Texas, slight limp from polio. Part of the story I told myself all my life was that polio had made me a fighter, that I was hell-bent on being strong because of it, and that much was still true.
But in the past few years, with the joys and demands of raising a young dog, I had begun to experience pain and lameness I'd never known before. The mystery of this decline cast a shroud of defeat over what I feared lay ahead. It seemed that the aftereffects of the disease had reemerged, ghostly and conniving, like a stalker who'd never left town.
YOUNG: But then, one day, Gail met a doctor who said, you know, we can fix that. Say what? Gail Caldwell's new book about her hip replacement and leg lengthening is called "New Life, No Instructions." And she joins us in the studio. Good to talk to you again.
CALDWELL: Hi. Thanks, Robin.
YOUNG: And you know, when I saw you, I can see the difference. I'm starting at the end of the story first. You know, you've changed. Your limp is gone.
CALDWELL: Bless you. I hope that's true.
YOUNG: I remember you distinctly standing up from this table, putting your hand on the table and the rest of your weight on one leg, and swinging another leg around.
YOUNG: Well, how do you...
CALDWELL: Hoisting myself. I think I did that for years, and I was doing it more and more.
YOUNG: You were using one leg as a cane, almost.
CALDWELL: Yeah. And I only knew it when I went back to Texas to see people and I would see old friends who hadn't seen me in years, and they'd say, why are you limping so badly?
YOUNG: Yeah. And you didn't...
CALDWELL: And I'd say, because I had polio. You know this about me. And finally, one said, you've never limped like this. You have to go to a neurologist.
YOUNG: Before we get to that, let's remind people where you are in life, when this whole chapter of your life takes place. People who've read your earlier memoirs, "A Strong West Wind," tales of growing up in Texas, something of a rebel, "Let's Take the Long Way Home," the just exquisite memoir of your friendship with Caroline Knapp, who in turn wrote "Drinking a Love Story." You and she shared sobriety and a love of dogs. And the men in your life had a deal with it.
Then Caroline died of lung cancer. Your mom died. Your beloved dog Clementine died. So who is the person we're meeting at the beginning of this new chapter?
CALDWELL: Oh, God, I think I was staggering out from all those losses, some of which are obviously predictable. One assumes we will bury our parents. But I decided that the only way that I could see my way through any of this was to get a puppy. And it was only when I was raising her and she was charging down the street like a plow that I began to think that, in fact, maybe she was more of a match for me than I had figured.
YOUNG: Well, but also maybe she was, as they do, pointing you toward another story.
CALDWELL: She did. I think she hauled me into the light. I mean, that's the thing. I felt like she was taking me down. And I think you're right. I think the opposite was true, that she hauled me toward a new story.
YOUNG: So the new story is you finally take an x-ray after 15 years of excruciating pain, and it turns out that the muscle atrophy caused the destruction of your hip bone.
CALDWELL: Right. Well, and, you know, this is what you said earlier about the story changing. I had been so convinced. When you walk into a room and you say polio, people don't - and they don't say, oh, plus you have a headache. They just say - it's like walking in with cholera. I mean, it's too dramatic to pay much attention to try to footnote the story.
And I had seen - oh, God - a couple of orthopedic surgeons and a couple of - so it went so across the board, surgeons, physical therapists, and nobody had said, well, let's see if there is anything else going on here.
YOUNG: Especially because there is such a thing as post-polio syndrome.
YOUNG: So problems in adulthood are the polio coming back with a vengeance.
CALDWELL: Well, I finally - I walked into a new doctor's office, or I should say staggered into one. And the thing that I - he was so warm and approachable, and yet I realized that he didn't seem that interested in what I was saying.
YOUNG: He didn't want to hear your story.
CALDWELL: He really didn't. He was - I mean, he wanted to hear it, but it wasn't the be-all, end-all.
CALDWELL: First, he said, what does the MRI show? And I said, there was no MRI and no x-ray. And got very quiet, which is always an interesting sign, and he said you're on your way to radiology. And within 24 hours, I had a different story.
YOUNG: Yeah, including you got a little bit taller. But we'll get to that. Gail Caldwell, in her new book she asks what do you do when the story you've told yourself about yourself your whole life changes mid-life, when a tale turns out to be a little untrue. It's like leaving the train at the wrong stop. You're still you, but in a new place. The book is "New Life, No Instructions." You're listening to HERE AND NOW.
(SOUNDBITE OF MUSIC)
YOUNG: It's HERE AND NOW, and we're continuing our conversation with Gail Caldwell. She begins her new memoir, "New Life, No Instructions," wondering if people who go to lords and receive miracles hold on to their crutches just in case.
The book is about holding onto stories about ourselves. In Gail's case, she lost her mom, her best friend, her dog, and for 15 years, a childhood limp from polio was getting worse. She attributed it to age - she was just 60 - and the polio. Then she got a new puppy. Walking him was excruciatingly painful. A doctor ordered an x-ray, and then surgery, and suddenly, Gail had a new story. We'll pick up that storyline.
But Gail Caldwell, you also had a new story to write. You began this book before the surgeries. You know, this book started out as something completely different.
CALDWELL: I had thought that I was writing a book about attachment, and this kind of preposterous, if you will, yes-but feeling of middle age, when you think want is bumping into entropy and you just keep going. And my mother, who had died in '06, had kept surfacing in a ghostly kind of way, and I wrote my editor and said: My mother and my history with polio are really showing themselves in this book. And that was before I had any understanding that the story was about to change.
YOUNG: Because your mother was the one who, when you were a little girl, your mom would lay with you and do these exercises with you, just an incredibly strong bonding moment that you had to through, for how many years?
CALDWELL: My mom was my first rehab coach.
CALDWELL: I remember it as this infinite dragging phenomenon of being on the floor with her, doing exercises. But I thought, as an adult, surely it wasn't that long. And when I asked her, she said, oh, it was a couple hours a day for three or four years - which, of course, is forever. And she never gave up.
And I still remember her voice. I still remember her lying next to me, doing every one of the exercises.
CALDWELL: She must have been in great shape. Saying, we'd do leg lifts and ankle raises, and I remember her saying just a few more, honey. I'll do them with you.
CALDWELL: Obviously, I can still quote it with the inflection that's the same. I think I have that voice so inside me.
YOUNG: Yeah, just a few more. I'll do it with you.
YOUNG: Your dad, too? He got you the cowboy boots with the heels?
CALDWELL: Oh God, yeah. What a pair they were.
CALDWELL: Refused to give up. My dad was, like, there's nothing you can't do.
CALDWELL: And I would go home when I was, I don't know, 45, and he'd see me limping across the den, a slight limp. He'd say, you mean that leg is still bothering you? And it just infuriated me. I'd think, does he really think that polio is something you, like, outgrow? But he just refused to believe that it was tougher than I was.
YOUNG: Well, come to find out, you don't outgrow it, but you finally take an x-ray. And what did the doctor tell you that it showed?
CALDWELL: He called me as I was leaving my house the next day, and said, well, no wonder you're in so much pain. You have no hip left.
CALDWELL: And he said: Do you have any questions? And I said, well, I have a lot of them, but I - the first thing I really want to know is what you think about this. And he said, well, to tell you the truth, I'm relieved. We can do something about this, which nobody had said to me, I think ever, about polio.
YOUNG: Not only replaced the hip, but lengthen your leg.
CALDWELL: Well, that turned out to be a different piece of it. My surgeon, when I met him, said, we can lengthen the leg while we're in there - as though it were, you know, we can cross the street. We can get a cup of coffee. And I was, like, oh, my God. Lengthen the leg, it was such an extraordinary thing.
CALDWELL: So, in fact, they were able to make up for about half of what I - what they call LLD, leg length discrepancy.
YOUNG: Yeah, 5/8ths of an inch.
YOUNG: Never has 5/8ths of an inch felt bigger.
CALDWELL: Oh my God, yeah, exactly. I'll never think a fraction is a small number again.
YOUNG: Well, but before the surgery - now, this is very dramatic. It's surgery, and it potentially life changing. But tell what's going through your mind at this point.
CALDWELL: What was interesting to me was that I went into this with a whole lot of hope and a whole lot of doubt colliding, which is maybe one of the things that happens to us in life about being human. And it was very frightening to me, and I also did not know - I think I'm glad I didn't know how much work was going to be entailed when I got on the other side of this, because I felt like, you know, I said that I felt like the Tin Man for a long time. I kept feeling like somebody had handed me this new machine and said you have to learn how to use this.
CALDWELL: I mean, my leg, I had to teach it how to walk, because I had polio when I was six months old, so I never walked with two legs that were equal. So now I had this new longer leg, and I kept having images of a foal when they stand up for the first time. And there were these floppy limbs, and I don't know what to do with them. I really felt that way.
CALDWELL: There was this leg that was longer and sort of in the way, because I had to train the muscles.
YOUNG: Yeah. The muscles that had been atrophied, but also all the other muscles. They said, well, there's nothing for us to do here. So they'd gone to sleep.
CALDWELL: Exactly. Everybody was, like, get a job, you know.
YOUNG: It's quite something. And before all that, before the surgery, there's a moment where you - no one will relate to this. You have one of those late nights where you suddenly, well, maybe I'll just, you know, my life is maybe about to change. Maybe I'll assess my life so far, and it's always dangerous to go near Google.
CALDWELL: Oh, God, yes.
YOUNG: You're Googling old boyfriends and oh, look, they live in, you know, beautiful homes in Greenwich, Connecticut and give flawless dinner parties, and you're sitting there eating take out with your dog.
YOUNG: And you fall into a little bit of the pity pot. I'd forgotten to marry and have kids. I often preferred canine company to humans. I would die sad and alone. Such was my recitation of despair pulled out from time to time like an ill-shaped sweater, you can't bring yourself to give away. But the next day, you're rowing, and that script starts to fade.
YOUNG: This whole idea that you have to let go of the stories we tell of ourselves.
CALDWELL: Absolutely. And God knows, I mean, I think this may be a human condition. The stories we tell ourselves are so powerful, and you have to really be careful, because if there's not anyone else listening and it becomes that recitation of despair, I think it's an endless loop.
And I think the beauty and magic of story, when we share them, whether we're writing them or we're having lunch with a friend and being intimate with them, the audience who loves you or who listens helps to shape it.
CALDWELL: And otherwise, the narrative is a locked room.
YOUNG: So here you are, post-surgery, I'm wondering if a part of your fear going into the surgery might also have been the person that you might be leaving behind, with the deficit in the leg, was the person who knew Caroline, who knew your mother, who knew Clementine.
CALDWELL: I think it's always - I just realized I'm nodding and I should make that verbal.
YOUNG: It's radio.
CALDWELL: I think there's a way - and, you know, maybe this happens at mid-life. There's a way when you start to accumulate the losses and you feel a loyalty to them, because they're part of your story. So you want - you don't want the story to change so much that it becomes unfamiliar.
When we're talking about the story - what do you do when the story changes, one reason that I had to sort of embrace the right turn that this book took was that I felt that I was being given another chance to think about the way we tell the story of who we are, and that the way you tell the story is what shapes the life, in a way. One begets the other. You think the events become the story.
But sometimes, the story becomes the truth. And I think it's really important in anything to be able to open your heart enough to change that, whether it's about leaving a bad relationship or calling a doctor at the right time, or saying, oh, my God, I need help here.
CALDWELL: I can't be married to the facts that I thought were right.
YOUNG: That's Gail Caldwell. Her new book, "New Life, No Instructions." Gail, thank you so much.
CALDWELL: Thanks. It's good to be here, Robin.
YOUNG: And we'll have an excerpt at hereandnow.org of this terrific read. And we should say, Gail still has a very slight limp from the polio, but again, a new hip replaced the one degenerated by arthritis, not polio. And, of course, her story isn't for everyone with polio, but I suspect some other people might be wonder, Jeremy, if they, too, have a different story to tell.
JEREMY HOBSON, HOST:
YOUNG: HERE AND NOW is a production of NPR and WBUR Boston, in association with the BBC World Service. I'm Robin Young.
HOBSON: I'm Jeremy Hobson. This is HERE AND NOW. Transcript provided by NPR, Copyright NPR.