New Life, No Instructions

by Gail Caldwell

  But the questions were coming, I had to concede, with alarming frequency—and from friends and strangers alike: Why are you limping? What did you do to your leg? Ow, that looks like it hurts! With strangers, the affect ranged from genuine concern to an odd form of rubbernecking, the latter of which had finally begun to get on my nerves. Physical infirmities are a Rorschach for all kinds of emotional responses, from fear to compassion. What got to me were the curious people who pressed for an answer, then seemed embarrassed if I said I’d had polio—as though it were cholera, and possibly contagious, or as if I’d just gotten out of prison. I’d learned to deflect the careless inquiries and embrace the nice guys, who were in the majority. One of the first things I had liked about Peter was the way he addressed this part of me within weeks of our meeting, sometime in 2002. We were walking the dogs down the block to our neighborhood park, and he asked matter-of-factly, “Why do you limp?” When I told him he said, “Wow! You had polio?” As though it were an adventure, or special circumstance, which I suppose in some ways it was.

  A version of this, though, is always going on from the moment two people’s time and space collide: Subtle or direct, we are negotiating the private and public spheres. If the wounds are on the inside, we have some choice about what to reveal when, and to whom. If the scar is on the outside—the physical signature that announces itself with the nuance of a trumpet—people tend to think they know a great deal about you, whether they do or not.

  I usually made intuitive choices about when to mention polio, but my one rule was not to mention it to coaches—not until I needed to—because I didn’t want to be pitied or mollycoddled. I didn’t want them to discourage me or assume I was the half-capable one they had to train. This strategy worked for years, but my clear decline on land was making it harder to pull off.

  What fears I had I did not share. I knew about the cluster of symptoms referred to as post-polio syndrome, or PPS, and I vacillated between trying to educate myself about it and acting as though it didn’t exist. Sometimes late at night I would go to the National Institutes of Health website, and read and reread the official statement there on the condition. I read it furtively, as though I were taking the Twenty Questions drinking quiz, and sometimes my stomach would sink while I was reading, and the next day I pretended I hadn’t read it at all.

  The syndrome occurs more often and more savagely with those whose original case of polio was severe, and can result in further muscle loss and incapacitating fatigue. The first person I knew who had suffered from PPS was the mother of an old boyfriend; she had had polio as a young girl, recovered well enough to walk with a cane as an adult, but was in a wheelchair by fifty. A trip to a neurologist when I was forty had eased my distress about the phenomenon, because, he told me, the more neurons lost, the less you have to work with; normal aging takes away muscle mass, so the effects are more extreme in an already compromised body. In other words, the greater the damage done at the onset of the disease, the greater the potential for fallout in later years. Evidence suggested I would be all right: I had learned to row in middle age, and was hell-bent on being one of the exceptions. A Pilates instructor had asked me in my early fifties if I was worried about using up my exercise capacity—she had known polio survivors who did only very light workouts, afraid they were exercising against the hourglass.

  All these were anecdotal insights, empirically useless for my condition, whatever it was. I tried for years to block the entire notion of post-polio syndrome from my daytime consciousness. I was already doing everything prescribed: moderate exercise, plenty of sleep. And so denial seemed the best course of action, given the NIH-stated prognosis: no treatment, no cure.

  12.

  The falling was one thing, but pain was another country entirely. And for the first time that I could remember, beyond the normal sprains and injuries associated with falling, I was experiencing it on a regular basis. This had sneaked up on me, in the way that most cataclysms reveal themselves first as hairline cracks. I had calf cramps and muscle aches and groin strains, my leg got cold at night, no matter how many blankets I covered it with, and sometimes it would simply buckle, as though protesting all the work demanded of it.

  I had ways of explaining each of these, ways of convincing myself that each twinge or ache or spasm was transient, understandable. It was when I started comparing myself with the person I’d been a few years earlier that the picture grew somber. In the not-so-distant past I had felt impervious to the most energetic dogs; now I held on to the fence at Fresh Pond whenever a big dog came up to greet me. The three-mile circuit from my house around the reservoir, once manageable, seemed herculean. When I did it at all, it took me a couple of hours. Tula’s energy level charted some of this decline for me. Walking with Peter or Nancy, she heeled like a model obedience dog, but she always lunged ahead with me. After she had learned the pace of normal walkers, she couldn’t comprehend why I moved so slowly by comparison.

  That autumn, in 2009, I went to visit friends in Austin who saw me every few years. Three different people expressed alarm at how pronounced my limp had become, even when I reminded them that I had had polio and was simply getting old like everyone else. At the insistence of a friend who had known me for decades, I made an appointment with an orthopedic surgeon as soon as I returned home. He had been around during the pioneering rehab on polio patients in the 1950s, and he could tell at a glance, even through my baggy cargo pants, which muscles had been affected and how.

  I told him about the falls I had taken in the past two years—I’d counted thirteen, though there may have been more. Still, he was philosophical, encouraging. He suggested balance exercises and gave me a prescription for physical therapy. He told me he still downhill-skied. He shrugged when I mentioned pain. “You’re like every polio patient I’ve ever met,” he told me. “You have a can-do attitude.” I didn’t want to disappoint him with my grim list of questions, but I plowed ahead. “What about post-polio syndrome?” I asked him. “I’ve been doing a lot of reading about it.”

  He smiled. “And what,” he asked me, “does Wikipedia have to say about PPS?”

  I swallowed the insult and said that my research was from a renowned rehabilitation hospital and the National Institutes of Health official statement on the syndrome. Then he explained why he believed it was a vastly exaggerated or alarmist interpretation of normal aging, enhanced by polio’s early (but finite, or self-limiting) effects. It was comforting to share this doctor’s optimism about me: He cheered on my lifestyle (big dog, swimming, rowing) and he seemed to view me as a glass-half-full type whose pain was negligible but whose spirit was not. I felt elated when I left his office—I can get stronger! Post-polio syndrome doesn’t exist!—and tried, for the next several months, to live up to his image of me. I went home and ordered the walking stick he had suggested, then parked it in the closet.

  After navigating ice all that winter, I stumbled in the backyard the next spring and landed hard on a flagstone, fracturing my left forearm. The break took a while to diagnose. I called my primary-care doctor and went in for an X-ray: A physician’s assistant didn’t touch my arm but sent me straight to radiology, ordering views of my elbow, not my radius. Two weeks later, when the pain became sharper after I lifted heavy pots in the garden, I went back for more X-rays. The doctor called that night and left a message. “The bad news is that your arm is broken,” she said. “The good news is that it seems to be healing well without us!” I vowed, not for the first time, to change practitioners.

  A few weeks later I came home on the train from New York, spending most of the nearly four-hour ride with my legs stretched out in front of me. When we arrived at Back Bay Station in Boston and I tried to stand, a shooting pain went down the side of my leg that was so debilitating I was afraid I couldn’t walk. I made it out of the station in three efforts, stopping and sitting on my rolling suitcase, then walking another twenty or so yards. By the time I got to a cab I was sweating, probably from the adrenaline it t
ook to get me there.

  My doctor diagnosed severe sciatica, and gave me a referral to physical therapy.

  Danielle was a young, willowy woman who was pleasant but all business. Twice a week, I showed up at her office to do leg lifts and core strengtheners and planks and cobras, then went home with a series of resistance bands and exercises I vowed to do daily. Usually I did them on the night before my next appointment, so that I could pretend I’d been keeping to schedule.

  Maybe my reluctance was typical—it’s hard to do prescribed floor exercises when you’re tired and in pain and no one’s watching. But I think I had an extra dose of defeat tied to any effort to strengthen my leg. When I got on the floor, Tula usually brought me a tennis ball mid-routine, so I got the comic relief I needed, and we would play a round of nose billiards before I began again. Inevitably, though, I felt the familiar impotence of that cold floor in Amarillo. Partly it was the pain this time around; maybe some of it was aging, which seemed these days to carry a mood of cauterized hope. But it felt like a darker, more specific knowledge of some downhill course I was on. The lightest excursions were tiring to think about. Dinner with a friend—well, I don’t know; how far a walk is the restaurant from the car? Meet Peter at the park for a ten-minute dog walk, a half-block away? Sorry, not tonight. If I forgot something in a far aisle of the grocery store, I’d do without. Even in my beloved woods I took shortcuts on the path to save ten steps. Rowing was only a little kinder. I could still get in a few miles, but it took me the rest of the day to recover. The only place where I felt free of pain, unafraid of falling, was in the water.

  I realize this now; I did not know it then. Chronic pain is a mean strategist—it takes away your life a little at a time. Acknowledging it goes against some primitive instinct of survival, and so one adapts by denying. This applies to all kinds of trouble: We find ways to anesthetize ourselves to bad situations. It’s easier, at least in the beginning, to pretend the antagonist isn’t there—or will go away, or not do it again, or not turn out to be such a problem after all. It’s always easier to wait until tomorrow to make the call. Then you look up and the trouble has bullied you into a corner of the room and eclipsed everything else in your life.

  I began to grasp what was happening to me only by watching the rest of the world. I marveled when I saw people older than I who were striding through airports, or jogging the pond, or moving with a security I hadn’t experienced in ages. I was traveling that summer, and I usually had a few good hours in the day if I timed it right and could stretch out in a pool. But I sagged in relief when I got to a hotel room at the end of the night, where I could count on room service and painkillers to buy me some relief.

  I saw Danielle throughout the fall. One morning, at her office, I decided to come clean. I was lying on the table and doing side leg lifts, which I loathed because they told me how weak my right leg had become. When I finished the set I turned to her and said, haltingly, “I have a confession to make—I haven’t really been sticking with the program. I’ve been feeling pretty defeated.”

  I was counting on a sympathetic response, some magic bullet of encouragement or optimism. Instead I saw a grim, slightly impatient look on Danielle’s face. She straightened up from the foot of the table and crossed her arms.

  “Well,” she said, “it’s not up to me to motivate you—I get paid whether you’re here or not. And I can’t promise you that if you do these exercises religiously, they’ll work. The only thing I can guarantee is that if you don’t do them, you won’t get any better.”

  I went home to get Tula and headed for the woods. We spent the afternoon walking the trails in autumn light, with Tula ranging after chipmunks and me feeling the sting of Danielle’s ice-water pronouncement. On one level I recognized its truth: It was not up to her, a half-stranger, to move me to change my body or my life. And I knew her attitude was not my problem, that she had been cold and unforgiving, and was in no position to judge me. But knowing those things had no effect on how leveled I felt by what she had said. I was flooded with a sense of failure, of what I now know was shame, and the dissonance of this emotion was a marker for me. Only the past can cast such a deep shadow on the present. What I was feeling that day was something I had felt as a girl, and I’d spent most of my life trying never to feel it again.

  “Well, you know, Mom really drop-kicked us out of childhood,” my sister is saying, during one of our endless conversations about our complementary but different versions of the past. As the more well-behaved older sister, Pam finished college, moved to Dallas, got a job. Like most young adults on the verge of mammoth responsibility, she may not have been ready to be drop-kicked; I was so long-gone already that I hardly noticed. Part of my footloose confusion was encouraged by the cultural rebellion around me, which, by 1973, had sent me from Austin to San Francisco and Berkeley, then to Taos, New Mexico, and back to Austin. I could barely remember to notify my parents what city I was in. But history always shows up to interpret our personal imprints, to corral them into some larger social truth. I suspect my rebellions, often unspoken but bone-deep, would have surfaced no matter what the circumstances.

  Was this the beginning of a tough persona, one that carried me many miles and years but ultimately had to be dismantled? Toughness can sometimes get you out of a rough spot on a dark street, but it can also get you killed, and it’s not all that useful when you’re facing private demons at 3 A.M. Toughness helped to get me out of Texas, and might have pushed me into newsrooms, fueled by adrenaline and testosterone. I’m less sure that it got me, say, to my first AA meeting, or into a therapist’s office, or into the muck of vulnerability that every love affair is. All these I had encountered, and at some point toughness becomes just another cliché, a veneer that has fooled somebody, for better or worse.

  I had an editor for many years who was smart and stubborn, who drove his writers with equal parts praise and tyranny. We were fond of each other, and sneaked away from the newsroom more than once to go to a Red Sox game. Like my dad, he believed me incapable of failure, or at least any admission of failure. He asked me one day why I was limping—he had known me at least five years—and I said, “You remember; I had polio. I always limp.”

  “Oh,” he said. “I always thought that was a swagger.”

  Tough is different from strong, of course, and sometimes it’s easy to be strong: hospital corridors, gravesides, emergencies. The hardest times are when no one is watching, and it doesn’t really matter whether you’re strong or not. The times when you think life is circling the drain, and the bedrock aloneness of it trumps everything else. That’s when animal instinct kicks in, and most of us start to crawl toward the light. Every soldier knows this, and probably every mammal. We like to call it courage, but the body doesn’t recognize it as such. You just put your head down and keep moving.

  13.

  By the end of that week, my sense of defeat over Danielle’s dismissal had turned into something else. I started walking farther at the reservoir. I’d barely closed out the rowing season that year, reaching my minimum required mileage from the boathouse where I was a member, and by December I had lengthened my walk in the woods to the reservoir’s entire circumference, about two miles. I didn’t mind that it took me nearly two hours. The dogs—I usually had both Tula and Shiloh—were accustomed to my amble, and they ran the hills above me as I walked. The pain I felt on city streets was softened by walking on pine-forest floor, and every time I made it all the way around the reservoir was a promise that I might do it again, might beat back the pain with muscle-building.

  Then winter hit, snowstorms and ice that didn’t melt until the following April. I often met my friend Jean and her cockapoo, Max, for walks, and some days I had to hang on to her as well as to the fence. We wore crampons for the ice and I started picking up a fallen branch at the beginning of every walk to use as a staff. When the ice melted, I kept using it. The pool at the end of the day offered its usual relief. But I tried stretching and resting, t
ried walking and not walking, and no matter what I did I felt a pain so thorough and migratory I could barely explain or isolate it.

  I told almost no one about the pain, about how ever-present it was, and I didn’t voice my worst-case scenario: that this was polio’s legacy, and would end in a wheelchair. Tula ran to me whenever I fell, but what filled me with despair was her adapting to what was now routine. Accustomed to my groans when I sat down inside the house, she still looked my way, but no longer with any surprise. The noise had become as familiar as car keys or laughter.

  In early March I went to see a new primary-care physician—a man who had long cared for a friend and who came highly recommended. After the mishaps and half-measures of the past couple of years, all I really hoped for was a sympathetic ear and a meeting about coping with chronic pain. Dr. Ranere was a big, friendly man who seemed immediately engaged: with me, my medical history, medicine itself. I delivered the usual sketch—polio as an infant, years of exercise and strengthening, recent years of pain. When he asked me where it hurt, my brain was so overloaded with information that I became confused. Had no one ever asked me where it hurt before? I can’t remember. I know only that I started with the lower part of the leg and worked up, using my hand as a guide, and said, “Here, and here, and here, and here …”

  Within twenty minutes, Dr. Ranere had been more thorough and thoughtful than anyone I’d seen in the medical profession in years. He considered a visit to a neurologist to ascertain the residuals of polio, but told me he was puzzled by my symptoms. “Polio is a neurological disease,” he said. “It explains the weakness but not the pain. What did the MRI show?”