On December 7, 1997, I stumbled out of my queen-sized bed, which occupied approximately half the floor space of my Brooklyn studio apartment, and crashed into my desk, which occupied a good portion of the other half. Mornings have always found my coordination compromised—brimming bowls of breakfast cereal have landed on my floor more times than I can remember—but not usually at this level. Cursing, I careened into the bathroom. Only then did the reason for my collision become apparent to me: Although I was now awake, my left foot remained firmly in the land of the sleeping, or so I deduced, given the sensation of pins and needles that accompanied any attempt to put weight on it. I found it a little odd— how often does one wake up with a foot asleep?—but I wasn’t particularly alarmed. Assuming it would be only a matter of time before my extremities caught up with the rest of me, I showered, ate breakfast, did some work on my first novel-in-progress, and tried to print out a couple of chapters. But my printer wasn’t working, and— such was the ferocity of my ambition—I remember this setback agitating me far more than the strange numbness that had by then gone beyond my foot and climbed up the length of my left calf. I was desperate to be published, and a magazine’s fiction editor had offered to take a look at the chapters if I could drop them off at his Midtown office that afternoon.
By the time I got there, it was late in the day. The numbness had become a deep freeze. It had invaded most of my left leg, as well as a portion of my left arm and hand. Sitting down made me wince. So did standing up. Even walking was uncomfortable. Somehow I managed to hobble across 42nd Street and deliver the manuscript. Only then did I allow myself the luxury of wondering what was wrong with me. On the recommendation of my boyfriend at the time, I went to see a certain Dr. Y., whose office was on an unfashionable strip of Second Avenue. Dr. Y. was Boyfriend’s GP; I didn’t have my own. I was 27, and health insurance had always seemed to me a frivolous expense, akin to homeowner’s insurance or that extra package of hypothetical payouts you can opt for when you rent a car. I was in what I thought to be good health and had had no previous medical troubles. I regarded my body almost anthropomorphically, as an essentially docile if occasionally petulant shadow figure that would behave if I did and could be coaxed into or out of anything with a cup of hot tea and a proper night’s sleep.
I don’t remember much about Dr. Y., except that, upon learning what I did for a living (or, rather, aspired to do for a living), he asked if I were related to the columnist Ron Rosenbaum. I politely pointed out that the surnames Rosenfeld and Rosenbaum were distinct, and he agreed, after which he gave me a quick once-over, invoked the phrase “pinched nerve,” and sent me home with a muscle relaxant and the name of a neurologist I might want to contact if things didn’t improve. They didn’t. The next day, Saturday, the left side of my back felt as if it were bound in a straight jacket. I couldn’t twist sideways or lean over. Meanwhile my left hand had stiffened into a loose fist, as if I had been holding a torch that had since slipped out of my grip. Looking at my hand, I thought of Pompeii, of all those bodies frozen in motion, one second of their lives immortalized forever. I, too, felt frozen in time, and yet I was both the subject and the archaeologist, excavating my own preserved limbs. I grew more alarmed by the hour but also more fascinated. In the space of 48 hours, my body, once a partner in crime, had been transformed into an alien being with its own mysterious agenda. I felt vaguely reverential, not only of its powers (which were obviously greater than my will), but also of its defiance. I felt like a parent whose once-reticent teen-ager appears at breakfast one morning with a pierced lip and a Mohawk: I wondered where this odd creature had come from.
My condition had an instantaneously felicitous effect on my relationship with Boyfriend, providing him with an excuse to take charge and thus prove himself a necessary and integral part of my life. (The previous fall I had broken up with him, dated someone else, then reappeared without explanation—behavior for which, until that weekend, he had given me constant grief.) My symptoms infused our union with a sense of gravity and history that had previously been missing from the equation. Whatever we were living through, it was serious, which meant perhaps that we, too, were serious. On Sunday night, as we drank merlot at a swanky downtown bistro—Boyfriend had convinced me that, for psychological reasons, it was important to carry on with our usual yuppie routines as if nothing were wrong—my left ear began to buzz, then went cold to the touch. Until that point my fears had mostly been overshadowed by my excitement at the novelty of the situation. But the thought of my mouth going slack, of being unable to smile or otherwise regulate my facial expressions, left me gasping for breath. For years already I had been plagued by the sense that my facial expressions were giving me away. I would smile when the moment called for sorrow, grimace when I needed to convey lightness and cheer.
As it turned out, my worst fears were not confirmed. Come morning I could still see, speak, smile, pout. But there was no improvement in my leg or back or hand. A colleague of Boyfriend’s referred me to Dr. Frank Petito at New York Hospital. He was a brusque, affable, 60-something with the cocksure voice of an airline pilot and a mischievous glint in his blue eyes. Outside the medical establishment, Dr. Petito is perhaps most famous for having saved the life of former MTV veejay Karen Duffy, who suffers from a rare autoimmune disease called sarcoidosis and whose medical memoir, “Model Patient,” is dedicated to Dr. Petito. My first consultation with him consisted of a series of reflex and coordination tests, some of which seemed more fitting to a 3 a.m. DWI roadblock than a doctor’s office. I was asked to walk in a straight line, to balance on one leg and hop, to touch my nose, touch Dr. Petito’s finger, and touch my nose again. (Double vision, I later learned, can be evidence of a brain tumor.) I was surprised at and even suspicious of how primitive these tests seemed. To think that, at the dawn of the 21st century, neurologists were still relying on wooden sticks, tuning forks and their own fingers.
For the first of many times that winter, I was also struck by how infantalizing the patient role can be. Hopping down the hallway of the Starr Pavilion, I was reminded both of the nursery-school game Simon Says and of the three-legged races in which I had participated every July 4th as a child in Vermont, where my extended family had a summer home. Dr. Petito in turn reminded me of my beloved childhood physician, Dr. Levine, the last doctor with whom I had had a personal relationship. Dr. Petito had the same reassuring, paternal manner, despite (or maybe because of) his politically incorrect banter. To my half-serious suggestion that I might be suffering from AIDS— for me, as for many of my generation fed a steady diet of scare literature in our college years, the smallest blemish would forever raise the specter of the virus and of all those nights we shouldn’t have but did— Dr. Petito replied with a smirk, “I don’t know. What kind of guys have you girls been hanging out with?” (A friend had accompanied me to his office.) For a nervous patient, a little humor provided just the right level of distraction, and it was hard to disapprove too much of anyone who would agree to treat me for free. I will never forget Dr. Petito’s response to my admission that I had no way to pay his hourly fee. “Don’t worry about it, kid,” he said, with an avuncular pat to my back. “I have enough money.”
Dr. Petito checked me into the neurology wing of NYH. I have never been good at adapting to foreign environments—on most trips I count the days until my return—and this was no exception. I felt marooned, disoriented. I thought about just walking out. My better judgment told me not to, told me I was there for my own good. But it was hard to believe. I experienced a strange kind of shame. Never mind the fact that my hospital room was at least as large as my apartment; I was embarrassed that my friends and family had to see me there, ensconced in a mechanical bed, with a dog tag around my wrist. It seemed so sadly in keeping with the rest of my life. I was the Great Disappointment. I tried to assume an ironic face, a can-you-believe-I’m-here face. It worked with my friends. But the mere appearance—never mind the exit—of Boyfriend or a family member elicited a torrent of tears.
Sleep deprivation only exacerbated my anguish. Thanks to an intercom system designed to bring all information to all people, a good night’s sleep in the hospital was an impossibility. Add a moaning, retching roommate to the mix, and even rest becomes a challenge. At various intervals throughout the night, nurses’ aides appeared, chatting all the while in daytime voices, to change my roommate’s catheter bag. Lights were flipped on. The smell was overpowering. The suffering on the other side of the curtain was obviously much greater than mine, yet I couldn’t muster up an ounce of sympathy for this woman, for whom the end was clearly in sight. I begged for a room change, but there was nothing available. I cried louder and harder. It wasn’t long before a psychiatrist was called in to talk me out of whatever it was I had talked myself into and, I could only assume, to calculate the insurance risk I might be posing to the hospital. “Are you in a relationship?” the psychiatrist, a preternaturally tanned Italian man, inquired. He had appeared at the foot of my bed looking like something out of a Paco Rabanne ad from the ‘70s. And then, “Have you ever thought about hurting yourself?” It seemed to me an odd line of questioning—if you were in a relationship, were you more or less likely to hurt yourself?—but I assured Tan Man that had no such intentions.
I reserved my most extravagant tears for the half hour preceding my MRIs. For those who suffer from claustrophobia, these scans are a small nightmare. I could get through mine (one of the brain, the other of the spine) only with a generous helping of intravenous Valium and a friend clutching my feet. She was my lone connection to the land of the living, or so it seemed as I lay there, shallow-breathing in my coffin-like enclosure, never quite believing in the white sand and turquoise sea my therapist had encouraged me to envision. In retrospect I see that I had purposely displaced my anxiety. I spent so much time worrying about the test itself that I didn’t have time to worry about the results. So it was that, the morning after the last test, when a posse of grim-faced residents with no social skills appeared in my room and announced without warning that the results of both my MRIs and my spinal tap were consistent with multiple sclerosis, I felt very little. At least I knew what was wrong with me. Such is the perversity of diagnosis that we would rather have an answer, even if the answer is the very thing we dread.
Though I barely knew what multiple sclerosis was—until then I had never actually distinguished MS from muscular dystrophy, and both diseases called to my mind the same haunting images of leg braces and home elevators—I spent the next hours imagining all the cities I’d never prowl, the mountains I’d never climb, the oceans I’d never swim in. And yet I lamented these lost prospects with only limited remorse. In truth I am not much of a traveler and even less of a hiker or swimmer. In truth I am happiest at my kitchen table, eating cereal and reading the paper. But it wasn’t only my physical apathy that allowed me to embrace the idea of illness. Until then I had always thought of myself as a fearful person—fearful of water, of airplanes, of breaking down on the highway, of getting lost in a foreign country. On that day I learned that I was not scared of death per se but only of the method of death—only of dying a frantic, panicked death, a prospect that MS, for all its miseries, did not present.
There was something else, too, something slightly less noble at work in my imagination. If only for the narrative value, there was something perversely thrilling to me about the idea of having a real disease. Where once I’d felt like a bit player in the human drama, captive to my mundane suburban birthright, now I could imagine myself among its leading actresses. MS promised to stamp my petty struggles with the imprimatur of the profound. To be stricken with a rare disease—did it not make me a rare woman? (N0 longer would I be confused for a poor relation of Ron Rosenbaum’s!) There was romance, as well, to be found in my particular infirmity. It suddenly made sense that weak limbs were used as a metaphor for arousal. Whoever loved me now would have to carry me away with him, I consoled myself, just as Anatole Broyard—in his memoir, “Kafka Was the Rage”—had carried his faint-hearted, abstract-expressionist girlfriend up the stairs to her Greenwich Village walk-up. Illness appealed to the submissive in me, and not merely in the sexual sense. No longer would I feel pressure to visit China, to write a great novel. Just surviving would render me valiant and adventurous. I could let life happen to me, rather than trying (and failing) to make it happen. Here was the truth: I was sick enough to be hooked up to an IV but not so sick that I couldn’t reap the benefits of infirmity. In sickness everything is given and nothing is asked for. In sickness there are no editors waiting for your text, no spurned lovers waiting for your explanation, no creditors waiting for your money, no apartments waiting to be cleaned, no lists you feel compelled to draw up.
In my enfeebled state, I found myself the recipient of a kind of unconditional love I had not known since I was a child. The presents flooded in; the phone rang all day long; the knocking on my door never stopped. Where once I’d had to answer to charges of selfishness and incompetence, now I was the blameless victim of a random crime that, unlike AIDS, or even cancer, could not be attributed to any lifestyle aberration on my part. Boyfriend and I had never been so close, so happy, so symbiotic. He had never felt so appreciated, and I had never been so appreciative. He paid for my private room at nearly 400 dollars a night. Thanks to that room, I found myself hosting a holiday party that I still, however perversely, recall as the greatest party of my life. I held court from my bed, my right arm extended dutifully for the IV (with the last of the tests over, I had been hooked up to a prednisone drip), the room a jumble of discarded coats and champagne corks, the window speckled with the lights of the East River, my 10 best friends gathered around me, drinking and laughing as my monologue ran on and on and on. I had never been as funny as I was that night. I had never been as high, either. (Euphoria is a common side effect of intravenous steroids.)
In the light of day, of course, I had no desire to be ill, least of all with multiple sclerosis, a frequently debilitating autoimmune disease that, as I learned, affects 350,000 people in the United States. MS involves the gradual loss of the myelin sheath around nerve cells in the brain and spine, disrupting the flow of signals between nerves and muscles. The loss of the myelin sheath leads to lesions, or scleroses. Symptoms range from gait and balance problems, fatigue and weakness, to visual impairment, and come and go unpredictably, at least in the early stages. Later the disease tends to become progressive and can leave its victims incapacitated and in wheelchairs. MS’s causes are still unknown, though it is clearly a disease of the First World (fìve times as likely to afflict those who grew up in temperate climates than in tropical ones) and twice as likely to affect women as men. MRIs have revolutionized its diagnosis, but it is still a famously difficult diagnosis to make.
In fact the interns’ proclamations were at least premature, if not erroneous. As Dr. Fetito acknowledged on my release from the hospital, “If I had to take my bets, I’d say multiple sclerosis. On the other hand, it might not be…We’ll just have to wait.” A sole lesion had been found in my brain stem. As I understood it, it took at least two scleroses (“multiple” sclerosis) for an official diagnosis to be made. The appearance of one lesion does not guarantee another. One in three people who have one brain lesion never get a second. What was I to expect? And how, in the face of this looming if uncertain catastrophe, was I to proceed with my life? It was difficult to concentrate on these questions, and for that matter, difficult to feel relieved at being set free without an official diagnosis while the sclerosis I did have remained a giant question mark.
To my relief, my left hand reopened just a few days into my steroid drip. Once I got home from the hospital, however, my leg grew even weaker. I felt like a balloon with only strings dangling from my torso. When I stepped down, there was nothing to support me. I started using a cane. Getting up to answer the phone, let alone going to the corner for milk, had become a project. The romance of dependency had begun to wear thin, as well. I was sick—as the novelty wore off and the reality of my disability set in—of being sick. Of being put in cabs. Of cringing every time I tied my shoe. The early stages of MS are known as “relapsing and remitting,” and all I could do was wait for it to remit. Boyfriend proved a tireless if sometimes dictatorial cheerleader. He yelled at me when I expressed defeatist thoughts. He devised the funny-movie-and-chocolate-cake cure, and every night we rented a Peter Sellers movie and indulged in sweets. It wasn’t a bad life. I had stopped writing completely, and lacking the energy or ambition it took to commute between our respective homes, essentially moved into Boyfriends Manhattan studio. Boyfriend had nicknamed me Gimp, a term I somehow managed to find endearing. I was hungry for all forms of attention, even if it made fun of my plight. Pity, too, was fine. I remember secretly relishing the look of barely disguised horror on my eldest sister’s face as I hobbled across Broadway, cane in hand, en route to a family excursion to see “Titanic” at the Loews on 86th Street. We hadn’t seen each other since Thanksgiving. She was six months pregnant. I was two months crippled. We made a strange pair.
A few days later, my movement improved sharply. Within the space of 24 hours, my symptoms disappeared as abruptly as they had appeared, traveling down the length of my back and left leg and exiting out my foot. It seemed like a miracle. Dr. Petito’s prescription was straightforward. “Go enjoy your life,” he said. But still the advice proved hard to follow. After the initial jubilance wore off, I felt let down and even depressed. My life, once filled with the dramatic tension of a TV movie, now seemed merely dull. Friends went back to treating me as one of them. Boyfriend and I began to quarrel again. He found me preoccupied, ungiving; I found him insecure, belligerent. The neurotic in me worried that I’d missed two months of work. The magazine editor for whom I had gone to such lengths to print my chapters that fateful December morning sent me a note suggesting that my novel was promising but not much else. A month later I had my agent send out the same chapters to 10 other editors around town. The book was rejected across the board. For the first time, I began to doubt my own ambition. Maybe, I began to think, it wasn’t meant to be. I spent my free time surfing MS-related Web sites, poring over lists of symptoms, devouring tales of other people’s struggles and (more rarely) triumphs, and imagining worst-case scenarios. What would I do if I woke up in the middle of the night and found myself blind—crawl to the phone? How would I deal with the humiliation of incontinence, etc.? Knowledge may be power, but there was something ghoulish about those hours I spent learning about a disease I did or didn’t have. I had found a focus for my pessimism, and it was hard to let go. As much as I may have denied it, I was waiting for the next flare-up, for the final proof of my misfortune, my frailty. In the shower sometimes I would feel a slight weakness in my left leg and become transfixed with fright and excitement.
But after a year passed and no new symptoms had appeared, the subject began to fade somewhat. Checkups with Dr. Petito increasingly elicited the same “You look good” and “There’s nothing wrong with you.” Slowly I began to believe it, began to believe that my lesion of ‘97 had been “just one of those things.” I threw out my Multiple Sclerosis file—the one with all the newspaper articles friends and family had clipped for my reading pleasure. I reintroduced the cocktail-hour cigarette (or two) into my life. I sold my novel.
Selling my novel was the most exciting thing that had ever happened to me, and I could concentrate on nothing else, not even Boyfriend. In early 2000 I finished editing the book. Boyfriend and I broke up for the last time a few days later. The novel was due out in September. In August, at a driving range in Montauk, I swung a golf club for the first time. I wasn’t any good at it, but my efforts produced just enough forward motion to convince me, when I woke up two days later with a crick in my right arm, that I was suffering merely the consequences of activating a dormant set of muscles. My thinking changed over the next 48 hours as the soreness turned to a throbbing pain severe enough to keep me up most of the night. The next morning the pain had mysteriously vanished, but I couldn’t lift my arm more than a few inches above my thigh. As the day progressed, I found I had barely enough strength in my shoulder to lift a teacup. My arm felt like dead wood. Most bizarrely of all, I had sprouted what appeared to be a wing just beneath my right shoulder blade.
Were life a magical-realist novel, this last development would have taken few readers by surprise. There was every reason why I might have sought flight at that moment. Life seemed to be unfolding at a greater speed than I could process it. In the space of a few months’ time, I had gone from total anonymity as a writer to bit player in the media machine. The same day a small bidding war erupted in Hollywood over the film rights to my novel, a close family member fell ill. I found myself juggling nursing duty with conference calls to L.A. Most unsettling of all, I had fallen in love. But then that was the kind of mood I was in—a mad, myopic, Anthony Minghella-directed, scarlet-sunsets-and-perpetual-psychodrama kind of mood. I had never been so full of myself; I had never felt so empty. Choosing to see my wing as a rich metaphor, I went to see my GP. (By then I had enrolled with an HMO.) Knowing something of my history, my GP took one look at my arm, got Dr. Petito on the phone, and sent me straight to Admitting. My first thought was, “Not another MRI.”
My second thought—after I noticed someone had written “multiple sclerosis” on the diagnosis line of my admitting forms— was a strangely calm and resigned “Of course.” Maybe in some way I thought I deserved it, deserved to be punished for my delusions of grandeur, for my quest for fame and recognition. Or maybe I was secretly looking forward to the escape that another bout of illness promised. Maybe I was just trying to be mature, a “coper.”
Still this latest incident had few of the earmarks of an MS flare. Pain is not generally associated with the disease. And in MS the legs are much more likely to be affected than the arms. Most significantly MS is a disease of the central nervous system (brain and spinal cord), and this time my brain MRI—once again preceded by a hysterical crying fit and the demand for an IV of Valium—came back clean. There were no lesions to be found, and my nerve damage appeared to be peripheral, i.e., located in the shoulder itself. But Dr. Petito wasn’t taking any chances. I went back on the IV steroid drip. This time I could afford the private room myself. The familiar euphoria returned. I remember a delightful night spent eating candy bars and watching “Judgment at Nuremberg” with a few friends—followed by a familiarly depressive crash upon my release from the hospital (and the IV). A month later I underwent an EMG, a diagnostic test that consists of equal parts electric shock and exploratory “needlework” (enough said) and is used to detect neuromuscular diseases. My presiding doctor was a yarmulke-wearing Zionist who spent most of the hour reprimanding me for having a last name like Rosenfeld and never having learned Hebrew. If aggravation is the best defense against pain, the doctor succeeded in his mission.
The results of my EMG were consistent with Dr. Petito’s initial suspicions. I was suffering not from MS but from long thoracic nerve palsy, a rare, disabling and, as these things go, not terribly serious condition with an 80 percent chance of full recovery (plus or minus some vestigial weakness) within two years, after hundreds of hours of physical therapy. The long thoracic nerve is located in the shoulder. When functioning properly, it activates the serratus anterior muscle, located in the back, whose job is to keep the scapula bone in place. When the long nerve is damaged or inflamed, the serratus anterior atrophies, causing the scapula to jut out like a vertical shelf (my wing!) and limiting mobility in the arm. How had my long thoracic nerve become damaged? LTNP, I learned, is typically the result of trauma or repeated stress. Victims of gunshot wounds and car accidents are often beset with it, as are professional pitchers and ballet dancers. It is also possible, though far less likely, for someone simply to wake up one morning with LTNP as one wakes up with a common cold. In this case the origin is said to be idiopathic (medical-speak for “We have no idea”), possibly viral. How likely is it that someone will simply wake up with LTNP? My rehabilitative medicine doctor at NYH, Steve Marini, had never seen a case. Nor apparently could my golf swing be blamed. “Did you kick up nine feet of dirt?” was Dr. Petito’s reply to my suggestion that perhaps I had done this to myself. “If the answer is no, then probably not.”
Nor, mystifyingly enough, was there any apparent connection between my two incidents of paralysis, in 1997 and 2000. “On the other hand, there might be,” said Dr. Petito, always one to cover his bases. “Hopefully we’ll never find out.”
Again I should have been relieved, and I suppose in most ways I was. Yet again I had been essentially diagnosed with a degenerative disease, only to find out that I didn’t necessarily have it. But the novelist in me could not abide the story as it now stood: An otherwise healthy 30-year-old woman suffering two isolated incidents of nerve damage in three years. It wasn’t merely that it didn’t seem plausible; it didn’t seem fair to leave me hanging like this, not knowing what to expect. Even when medicine can’t provide cures, we expect it to provide answers. And yet in my case there was no coherent narrative in sight, only a proliferation of clues. My frustration threatened to outweigh my relief, and I went back to the Internet, determined to come up with the “missing link” myself. But my amateur efforts, conducted mostly via google.com searches, yielded nothing but dead ends.
It was only then I came to wonder if I was suffering not from MS or any other autoimmune or neuromuscular disease but from my own need to tie up loose ends and find connections between disparate things, and by association, my inability to accept the essential ironies of life. In fact there is nothing more ironic than illness—the nonsmoker who dies of lung cancer, the professional athlete who dies of a heart attack. Just because the odds of something happening are slim doesn’t mean it won’t happen; in fact it means it sometimes will. Supposing we have a one-in-a-million chance of waking up with an idiopathic case of long thoracic nerve palsy (I could find no statistics on the subject), then one person in a million will wake up with an idiopathic case of long thoracic nerve palsy. And of those who do, a tiny percentage will probably also have been afflicted with a brain lesion. And of those who have been afflicted with a brain lesion, at least one in three, if Dr. Petito is right, will never have another one.
As mathematician and social critic John Paulos has taken pains to prove, there is really nothing surprising about coincidences, and it is the novelist’s failure to account for random chance that makes fiction untrue to life:
The most amazing coincidence of all would be the complete absence of all coincidences.…One consequence of the mistaken belief that coincidences are special and almost always significant is their rarity in most modern fiction, where introducing one is considered a form of cheating….Coincidences are the ubiquitous stuff of life and leaving them out of a novel or movie makes plot and character development necessarily more deterministic and less lifelike.
But to allow for the possibility that there was no causal connection between my two paralyses and that I was merely the victim of bad luck, I have had to reject the emotional connotations of my illness, as well—not just the rich metaphors (my wing, my weakened limbs), but the entire romance of my incapacitation—most significantly, my sense of myself as a frail flower or tragic heroine, ever teetering on the brink of disaster. All of us, at one time or another, construct advantageous narratives out of our physical distress. It is comforting to envision the body as a material record of our spiritual and emotional lives. For that matter, it is a tenet of alternative and holistic medicine, but it is not always accurate. Sometimes we have to look outside the body for proof of our mysteries.
Sometimes a symptom is just a symptom.