The Pain Chronicles (28 page)

But failure was not to be dwelled on. I did exercises in chronic-pain self-help books on cognitive reframing to learn to avoid
catastrophizing
and
Cassandraizing
and told myself they could make a difference. The voice of doom, for example, that says
I will never get better
could be reframed as
I feel optimistic about my treatment.

How optimistic? Every birthday I wished for my pain to go away, and every year that wish had not been realized. I had other wishes, of course, involving love and work, but each year when I stared at the melting candles and compared them with pain, there was no comparison. People who spend their lives wishing for things that don’t happen are pathetic and should get a grip, I decided, so one year I resolved to wish for something I wanted, but that was likely to come true—something, in short, that would not excessively tax the Wish Fairy. I settled on long life for my cat, Cambric.

On my next birthday I woke bedraggled with pain, while Cambric was as healthy as ever. I refocused my birthday wishes on my affliction.

MORE BETTERNESS TO GET

The fetters of my pain loosened; the relentless ghost returned to its dwelling. When I first got the results of my MRIs, I assumed I was condemned to ever-worsening pain. The diagnosis had seemed so devastatingly definitive, substantiated by films that revealed the truth of my diseased skeleton beneath the cloak of flesh. But I was wrong. Although I do have cervical spondylosis and spinal stenosis and other degenerative conditions, I now understood that the course of chronic pain is unpredictable. There are people whose MRIs show significant problems who feel fine, and there are others who appear to have normal films whose lives are besieged by pain.

My pain was getting better.
Better and better
, I told myself. I was getting stronger through physical therapy and could open jars and pick up things that used to be impossible. I took note of other small markers of progress: how I used to be pained by riding in a bouncing taxicab, or having my hair blown dry in a salon, when the brush would pull the hair taut, then release it in a way that jangled my neck and caused a small, evil sensation. But none of the treatment I tried was transformational in the way that Dani’s was, and although I was getting better all the time, somehow there was always more betterness to get. I wasn’t aware of being in pain all the time, but whenever I thought about whether I had pain, I always did. There were pain-free moments owing to my being preoccupied—happily or unhappily—with something else, but I was never able to “catch” a pain-free moment and enjoy it, which meant that, in some sense, I was always in pain.

Although my shoulder improved through physical therapy, my neck improved less, and over time, a new pain developed on the right side of my face and forehead, like a snake that slithered up behind my ears and struck behind my eyes. It was diagnosed as an occipital neuralgia, which meant, I discovered, a problem with the nerves that supply the eye area, for which there was no good treatment (except for a major surgery that attempts to decompress the blood vessels that cluster behind the eye and has a high rate of complications and a low rate of success).

The occipital neuralgia caused muscle spasms, which triggered migraine headaches, so I got Botox injections every three months at the New York Headache Center to paralyze the muscles in my face, as well as to treat the spasms in my neck and shoulder caused by the problems in my spine. A 2005 study found that three Botox injections cut the frequency of migraines by 50 percent or more for the majority of patients. I tried to be grateful that the treatment helped me, which it did (and, unlike other medications, did no harm), rather than disappointed that I wasn’t among those it cured. I liked going to the Headache Center. I liked the neurologist, Alexander Masukop; the nurse practitioner, Lynda Krasenbaum; and the waiting room, where I would admire the stylish Upper East Side women who looked to me like the worried well, which is what I aspire to be.

I felt jealous of everyone who didn’t have pain, which—it seemed to me—was everyone else. At a department store one day, all the clothes my friend Amanda tried on draped perfectly on her voluptuous body, whereas on me—still underweight from nausea—they hung as on Raggedy Ann. Sitting across from her at tea afterward, I thought how once, I would have envied her breasts, but now I only wanted her neck. I wanted to reach across the table and snatch it and place my own head upon it.

But what would I do with Amanda’s head? She has her own sorrows; even in the fantasy I didn’t feel good about sticking her with my neck. I paused, trying to think of a solution, until she looked at me quizzically—
Hello?
—and we resumed analyzing the bounty of the after-Christmas sale.

A HUNDRED BLESSINGS

Since I do not believe in a god who should come to my aid or a goddess who should have compassion for me, pain did not make me suffer from negative religiosity. Nevertheless, I was filled with telos decentralizing thoughts.

Over the years, pain undermined my sense of myself as a lucky person. I had always placed great emphasis on luck: in my
telos
, luck was what substituted for the idea of an intervening creator. The street always had two sides: the sunny and the shadowed; the blessed and the blighted; the one who has, to whom all will be given, and the one from whom all will be taken. Luck, for me, had the erratic character of an ancient deity, a necessary protection that could be lost at any moment.

Most people internalize their luck—it becomes
them
—something they feel they deserve, as one always deserves to be oneself. Yet because it’s luck, it can change at any moment. Suddenly you’ll find yourself exiled to the shadowed side of the street. The coin had flipped my way again and again. Good (compared to most) historical period. Good (qualification, qualification) country. Good birth family. Good body: good heart, good kidneys, good lungs, and then . . . The toss was unfavorable. In the Book of Life, a small genetic error had been made. The vertebral passage that held my spinal cord was too narrow. The cartilage—which usually lasts most of a century—had begun to degenerate after only three decades.

The answer to
why me?
seemed plain: bad luck. And this was an answer I found devastating, since I don’t believe in fate, but I do believe in luck. I felt as crushed and blighted as if the fates were actively smiting me. Our bodies are the landscape in which our lives take place; pain was my landscape now. I felt like a cartoon Eskimo lying on a shrink’s couch complaining,
I always feel cold
and
I don’t want to build an igloo—I belong in Key West.

A friend told me about a self-help exercise she was trying in which she had to think of a hundred blessings she had received from her newly ended marriage.

“Were there a hundred blessings?” I asked.
You are, after all, divorcing.

“Well, that’s the work of it,” she said, “to think of a hundred. That’s how you experience the blessing—by thinking of it.”

“How many have you thought of so far?”

“A number,” she said, lifting her chin slightly. “Half a dozen at least.”

Although I could see that the kind of person who thinks about catastrophes in terms of blessings is, in fact, blessed, I couldn’t think of a single blessing associated with pain. The next time I saw her, she had found true love and was basking in new blessings, while my pain remained the same.

Blessings, blessings
. . . Would pain make me more sympathetic to people with health problems, or less, because I was preoccupied with my own? Perhaps pain would inspire me to take better care of myself—unless I felt too wretched to bother. I thought of a Zen tale about a boy who is given a horse. How lucky he is, the villagers say. We’ll see, the Zen master says. Then the boy falls off the horse and breaks his leg. How unlucky he is, the people say. We’ll see, the Zen master says. Then war comes, and the men go off to die and the boy stays safely behind . . . We’ll see, we’ll see, we’ll see.

But to see pain as lucky or, even, not
un
lucky seemed like a betrayal of my own sensory experience—or masochism. Printed on the first page of my pain diary was the saying “Once you learn to live with arthritis in a way that you see some good out of it, then you’ve begun to heal.”

Was there a way to understand pain that was both positive and true—or at least not actively false?

FORTUNE

Wandering around a vast Home Depot one day, looking for a certain kind of nail, I bumped into a man in an orange customer-service apron and asked for help. He was in his twenties, and half of his face was disfigured, the skin mottled with scar tissue.

“I’ll show you,” he said. I followed him as he strode confidently through the labyrinth of aisles. “I’m legally blind, so I can’t pick out the package for you,” he said, stopping finally before one column, “but it should be right in this row here.”

I saw that his brown eyes had a filmy look. I asked what had happened, and he told me that when he was seventeen, he had been the driver for a hunting party. A teenager in the backseat had been fooling around with a rifle and had shot him at point-blank range. But God had saved him, he said. He had been crazy then—drinking, knocking at death’s door—but God gave him a second chance.

“I was very fortunate,” he said earnestly. “The accident saved my life.”

I stared at him to see if he was joking.

This is what people mean when they talk about the beauty of the human spirit, I thought: to put aside a million objections and mentally turn misfortune inside out.
God let me be shot
becomes
God diverted the bullet
, and
I lost half my face to a teenager’s stupidity
becomes
the accident saved my life.

If this were
Pilgrim’s Progress
, this moment would be offering me the key to escape imprisonment in Doubting Castle. I didn’t believe in divine intervention, but as with the hundred blessings, I knew that if the man believed the accident saved his life, and acted accordingly, then that belief became true. Could I invent such a narrative about my pain?

“We say God and the imagination are one,” Wallace Stevens wrote. “How high that highest candle lights the dark.”

A Positive Idea Conjured by the Power of Imagination rewrote my pain. An Inspirational Narrative saved me.

“I am very fortunate,” the young man reiterated, smiling a crooked smile with the whole half of his face.

THE CRACK WHERE THE LIGHT COMES IN

I decided to reread
Kitchen Table Wisdom
, the book that the train conductor who lost three of his limbs had found so inspiring. The book is boldly subtitled
Stories That Heal
, but the first time I read it, I had felt distinctly excluded from the healing.

Rachel Naomi Remen is a physician who counsels patients facing life-threatening illness, as well as their caretakers, and she has been a pioneer in the holistic health movement. Although I could see that Remen—who has struggled with Crohn’s disease since she was a young woman—is a heroine, her book irritated me. Its central idea is that illness can be a gift. Using Judaism, Christianity, and Buddhism, Remen transforms terrible stories of disease into heartwarming tales of auspicious coincidence and lessons learned (or—I found myself thinking—embroiders sentiment upon tragedy, in a way that belies the material).

The incident in the book that struck me the most concerned a handsome college baseball player whose leg had to be amputated above the knee when a tumor grew in it. He refused to return to school, and he began drinking, using drugs, and alienating his friends. His former coach called Dr. Remen and asked her to meet with him. “Filled with a sense of injustice and self-pity,” she wrote, “he hated all the well people.”

During their second session, she asked him to draw a picture of his body. He drew a picture of a vase with a crack in it, going over and over the crack with a black crayon. Dr. Remen worked with the young man for two years, during which time he became involved in counseling young people facing deforming illnesses and injuries. His attitude changed, from complainer to consoler. He cheered a young woman in the hospital who had just lost both her breasts to a preventive mastectomy, and eventually he married her. During their last session, Dr. Remen showed him his old drawing again.

“It’s really not finished,” he said. He took a crayon and drew yellow streaks radiating from the cracks. “This is where light comes through,” he explained.

I continued pursuing pain treatment, and I waited for a sense of the light, if there is light, and wondered where it might come in.

ROMANTIC AND PHYSICAL PAIN

Romantic pain and physical pain have nothing to do with each other, unless you let them. Conflating the two in my relationship with Kurt long ago had kept me from seeing each of them—the romantic and the physical—for what they were. Yet whenever I tried to keep my pain diary, the two immediately began to interweave. The space in the pain diary for Symptoms was right next to the space for Feelings. In Symptoms, I’d complain about pain; in Feelings, I’d inevitably turn to my romantic discontents.

For a number of years, I periodically went to physical therapy. I would go three times a week for a few months and make progress, and then I’d stop and faithfully continue my exercises every day for six months or a year, telling myself that
physical therapy is the ticket.
But eventually the mantra would wear out, and I’d fall off the wagon. I’d miss a day and then a week, and of course, it would make no difference, so I’d slack off more, and then after a few months I’d realize I had deteriorated, and—filled with self-reproach and new resolutions of commitment—I’d start all over again. At first I’d make tangible progress, but after some months the progress would plateau and motivation wane. Yet when I’d stop, I’d have to face the frustrating fact that after a point, physical therapy didn’t make my pain better, but not doing it made it worse.

When I was single, I’d often schedule physical therapy appointments at the end of the day and arrange to meet a date for a drink afterward, just as the pain was setting in from the exercise. Dating and physical therapy struck me as bleakly parallel: small, futile-feeling gestures that require faith to believe they will eventually lead you somewhere. The feeling of pain would set in at just about the same time as the feeling of disappointment in the date: the person across the table would come into focus, and I would see that despite the initial intrigue, he was not my type after all—not at all, again and again. And the rare occasions I imagined otherwise, the relationships turned out badly—physically as well as spiritually.

At times I had the illusion that there was a conspiracy of men to thwart my attempts to get better. I got into a silly teenage-type spat with my large, ursine father involving a car, and in trying to wrest the car keys from my hand, he accidentally twisted my bad arm, and the bruises lasted all summer, and I was too embarrassed to go to physical therapy. And when I recovered from that, my relationship with the man I was dating then kept setting me back.

I had dated many men whose problems as a partner I had concluded stemmed from a lack of sufficient maternal love—a lack for which the women in their lives were doomed to try to compensate,
forever.
Zach, however, had a lovely doting Jewish mother who treated him like a prince; I fell in love with him when I met his mother. Unfortunately, I discovered, his conviction of his princeliness seemed to free him from the burden of
behaving
like a prince.

My book bag, gym bag, and duffel bag at that time were a set made of a flowered Laura Ashley print.
“Laura Ashley?”
he’d say when I couldn’t bear the weight and would try to hand any of them to him. I bought a bunch of black bags and suitcases. Carrying those would make him look like a refugee or a homeless man, he grumbled. “I’m not a
camel.
” My therapist advised that I try acknowledging his feelings. “I don’t want you to feel like a beast of burden,” I would begin, “but . . .”

“But
what
?” he’d say. “How is your physical therapy going?”

“Very well.”

“You always say that.”

“It’s always true.”

Zach’s family owned a vast western ranch. As it happened, none of the family members were outdoorsy. They all had a morbid fear of bears, and their preferred mode of exercise was to drive half an hour into town to walk around a track. But their place in the landscape was clear: the sage-covered hills as far as the eye could see were theirs, whereas my place—on their property and in their family—was uncertain. I was always uneasy that one day Zach’s father would take his son aside and tactfully convey that I was a weak seed, unmeet to be a help meet.

One afternoon we went to help a neighboring rancher with his lambing. The experience was decidedly unenchanting: the baby lambs turned out to be evil, oversize creatures who thought nothing of wrenching my arms from their sockets when the rancher casually directed me to still them.

By the time we got home, I was dumb with pain. We were going out to dinner; I had a new, overpriced dress for the occasion that I had bought because Zach had said approvingly that it made me look like the girls with whom he had gone to boarding school. Should I put on a ThermaCare as well—an invalid’s necklace? Should I take a Percocet and risk seeming glazed, while inexplicably refusing champagne? I opted for the champagne, which made me explicably glazed. Better to look like a heavy drinker than a sickly specimen, I decided. Plenty of ranchers were drinkers.

When Zach’s New York apartment had been renovated, he had saved an old solid-oak door, propping it against the wall behind his bedroom door and sealing the arrangement with the doorstop. He kept it that way for years, always leaving his bedroom door open in order to hold the antique door behind it. He failed, however, to inform me of the arrangement during the two years we dated, so once, when he was talking loudly on the phone in the living room, I unstopped the bedroom door and started to close it behind me. The antique door crashed down and knocked me unconscious. I woke a minute later with excruciating neck pain.

At the hospital, Zach filled out forms as to the nature of the accident, chuckling at the question about whether it derived from physical “abuse” and declining a consultation with a counselor on my behalf.

The next time I went to his apartment, I discovered that he had once again precariously balanced the door behind his bedroom door in exactly the same way.

“Well, you wouldn’t close the bedroom door twice, would you?” he said. “That would be pretty stupid.”

I was oddly drawn to men who seemed to possess a store of specialized knowledge, like the ancient priest-physicians who knew the magic formulas that spoke to the healing gods. Without that, it was hard for me to feel seduced, the way some women felt about men who were shorter or slighter than they. The kind of knowledge that had always appealed to me was in the humanities: literature, art, philosophy, psychoanalysis, film. But when, on a vacation, I happened to meet a pain doctor, I realized the field of medicine now possessed that same allure.

I was seduced by the way the pain doctor seemed to understand my body. With most men at some point I’d have to say:
Please don’t throw your leaden arms on my delicate shoulder
, or, YOU ARE MASHING MY NECK. I was careful not to ask him for medical advice, because I had noticed that doing so irritated my physician friends, but his hands instinctively found the pained places in the dark, and occasionally, at an idle moment, he would lightly adjust my head on my shoulders so that it settled better. Sitting at an outdoor café once, he analyzed the muscular-skeletal problems of a woman walking down the street who had, he declared, an “antalgic gait”—unconsciously favoring certain motions to avoid pain. I felt he was seeing humans in a different way, a way I craved learning.

Visiting him at his fishing cottage in Nova Scotia, I was taking a shower at night when I discovered a tick half burrowed in my abdomen. He seemed oddly alarmed.

“Can’t you just take it out?” I asked.

“I don’t know. I could hurt you.”

“In an erotic way?” I teased, and then, “Oh, come
on.
Didn’t you, like, do a surgery rotation?”

He tried heating it with a candle flame in hopes that the tick would withdraw. When it didn’t, he sterilized a knife in the flame and, holding the candle for light, began to pry it out. I lay back on the couch, my shorts pulled down, and he knelt before me holding a candle. We joked about how someone walking by the windows might imagine they were glimpsing a sadomasochistic scene.

In bed that night, I asked him about the formation of the face. He named the fourteen bones of the face one by one, touching my face lightly each time as he said the word, like Adam naming the animals.
“Neck?”
I asked sleepily, falling asleep as he touched my first vertebrae.

In the morning I discovered him downstairs, slumped in a chair, looking haggard and disturbed, stroking his three skittish cats. He looked horrified to see me; the cats scattered and darted beneath the sofa. After I fell asleep, he confided, he had had a fantasy that terrified him—forcing him to get out of bed and sit up all night alone. In the fantasy he had the knife and the candle again and I was lying back on the couch while he carved open my abdomen.

_______

When I met Michael, I waited to have the conversation about pain I had had with all the men I had dated. I’d adjust my voice to a patient register and explain that (although it was hard to imagine, as it is always hard to imagine being in another’s body, especially when you are a large, exceptionally sturdy younger man, as Michael is) I truly couldn’t carry those book bags or groceries or some ordinary thing. I feared that conversation would make him realize it was a drag to have a partner who wasn’t—in the basic sense—
handy.
Naturally, there would be the modern part of him—the dominant part, I hoped—that loved me for my mind, but perhaps there would also be a Hunter who wanted a Gatherer.

I prepared to tell him that I hoped he wouldn’t see it as symbolic: that I had seen it that way myself, but had rejected such an interpretation, and that my personal flaws are not connected to my physical ones and I hoped he would remain clear on that point. Of course, a certain type of man might find this symbolism
attractive
—the Pea that proves the Princess. But I knew Michael was healthfully unattracted to helpless princessness, and indeed placed great value on competence, and I liked that about him, although it also worried me.

But that conversation—that brief, dreadful exchange I had come to expect and would try to forgive, but which would mark for me the beginning of the end of the relationship—that conversation never happened. I could hand Michael my bags without explanation, or, I noticed, if I simply waited, he would automatically pick them up. Whenever he asked me to carry anything—to take his briefcase, for example, while he was dealing with getting the four heavy suitcases that contained an excessive number of books and outfits—he would say in a neutral tone, “Can you take this, or is it too heavy for you?” allowing for the possibility that it was and making that possibility sound reasonable. Because he used this formulation even when asking me to pick up something very light, I was frequently in the satisfying position of being able to declare that I could.

I didn’t want to thank him, because I was afraid saying something would jinx it. When I finally did, he said, “Oh, I never thought of that—that someone could be annoyed by that.”

Once, he told me, he was alone in the house when the heat stopped working. He left a message for the landlord and resumed crafting computer code while the temperature steadily dropped. He put a sweater on and made tea. He put a second sweater on. He tried to read, but found he was unable to concentrate because part of his brain had begun to panic.
Will it always be like this? Will it continue to get colder until I perish? How can I get back to that old, warm way of living? How could I have not appreciated warmth while I had it?

“I was thinking,” he said. “Is this what it’s like for you to have pain?”

I caught my breath.

“I didn’t know you ever tried to picture it,” I said.

The first summer we were living together, he came home from Costco one day with the car filled with flats of boxes of ThermaCare. “They were a good price,” he explained, and began stacking them in the garage. “What’s wrong? I thought you said a person could never have too much ThermaCare.” I had sublet my apartment in New York to try living with him in Portland, Oregon, for the summer. There were six weeks left in the summer and three hundred boxes of ThermaCare.
I would like to marry this person
, I thought.

When Cynthia and I went shopping for a wedding dress, my sole criterion was that the dress be long-sleeved and high-necked to conceal the hateful parts of my body. “You’re Orthodox?” the saleswomen would ask when I explained what I wanted.

“Why do you want to cover your beautiful shoulders?” a saleswoman at Kleinfeld asked in her Long Island accent as I stood in front of the lighted mirror. She tugged the bodice lower. “You have a lovely, long neck, like a swan.”

I woke on my wedding day in the way I always awoke, into consciousness that is consciousness of pain, like a bird smacking into a window. It was no different from any other day, but I realized that I had subliminally expected it to be: I wasn’t changing my name, but I still hoped to relegate pain to my single self. Since I had dismissed the idea that romantic pain had anything to do with the origin of the pain, there was no reason that marriage would cure it, but (since nothing else had) part of me still hoped that somehow it might.

I couldn’t help but idly fantasize about narrating to a friend one day, from a cosseted married vantage point, perhaps in a museum tea shop:
I don’t believe in magic, of course, but it was the strangest thing—even though
I had had it for so many years, when I got married, my pain sort of magically disappeared . . .

At the collapse of the fantasy I felt a prick of sad anxiety: Would my wedding day be imperfect? I had spent thousands of dollars on the sleeveless dress, but inside the sparkles would be my old body, secretly gnarled in pain.

It was a frigid day, cold yet snowless—a typical January day. The climate had failed to make an exception for our wedding and turn balmy, but we didn’t need it to. We had determined to have a joyous winter wedding, a candlelit wedding. I would rejoice in my new life in my old body.