The Pain Chronicles

ALSO BY MELANIE THERNSTROM

Halfway Heaven: Diary of a Harvard Murder
The Dead Girl

THE PAIN CHRONICLES

THE
PAIN
CHRONICLES

Cures, Myths, Mysteries, Prayers, Diaries, Brain Scans, Healing, and the Science of Suffering

MELANIE THERNSTROM

Farrar, Straus and Giroux    New York

FARRAR, STRAUS AND GIROUX
18 West 18th Street, New York 10011

Copyright © 2010 by Melanie Thernstrom
All rights reserved
Distributed in Canada by D&M Publishers, Inc.
Printed in the United States of America
First edition, 2010

Grateful acknowledgment is made for permission to reprint the following previously published material: “Final Soliloquy of the Interior Paramour,” from
The Collected Poems of Wallace Stevens
by Wallace Stevens, copyright © 1954 by Wallace Stevens, renewed © 1982 by Holly Stevens. Used by permission of Alfred A. Knopf, a division of Random House, Inc. Excerpts from “The Poem of the Righteous Sufferer,” translated by Benjamin R. Foster, from
Before the Muses: An Anthology of Akkadian Literature
. Used by permission of CDL Press.

Library of Congress Cataloging-in-Publication Data

Thernstrom, Melanie, 1964–

The pain chronicles : cures, myths, mysteries, prayers, diaries, brain scans, healing, and the science of suffering / Melanie Thernstrom.—1st ed.

    p. ; cm.

Includes bibliographical references and index.

ISBN 978-0-86547-681-3 (hardcover : alk. paper)

1. Pain—Popular works. I. Title.

[DNLM: 1. Pain—etiology—Personal Narratives. 2. Chronic Disease—psychology—Personal Narratives. 3. Chronic Disease—therapy—Personal Narratives. 4. Pain—psychology—Personal Narratives. 5. Pain—therapy—Personal Narratives. WL 704 T411p 2010]

RB127.T485  2010
616'.0472—dc22

2010002390

Designed by Abby Kagan

www.fsgbooks.com

1  3  5  7  9  10  8  6  4  2

Some names, certain locations, and identifying details of people have been changed to protect their privacy.

For my parents

Dolor dictat

CONTENTS

Introduction: The Telegram

  I. THE VALE OF PAIN, THE VEIL OF PAIN: PAIN AS METAPHOR

Dolor Dictat

Pain Diary: I Keep a Secret

Poena

The Descent of Pain

Their Eyes Were Open to Suffering

Evil, Hurtful Things of Darkness

No God Came to the Rescue, No Goddess Took Pity on Me

Pain Diary: I Avoid Diagnosis

Acute and Chronic Pain

Destroyer of Grief

The Plan

The Placebo Dilemma

Repressed Negative Emotions

Thistles to Thee

Jesus’ Pain

The Martyr’s Paradox

Trial by Ordeal

Pain Diary: I Decide to Get a Diagnosis

The Body in Pain

Pioneer Girl

 II. THE SPELL OF SURGICAL SLEEP: PAIN AS HISTORY

Conquering Pain

The Craft and Its Terrors

A Terror That Surpasses All Description

Drowsy Potions

Mesmerized

A Chimera Not Permitted

By Whom Pain in Surgery Was Averted and Annulled

The Slavery of Etherization

Pain Diary: I Get a Diagnosis

One’s Whole Life and One’s Fate

III. TERRIBLE ALCHEMY: PAIN AS DISEASE

A Particular Chamber in Hell

The Shape-shifter

The Undeadness of Dead Nerves

Neuropathic Pain Syndromes

Surgical Pain Syndromes

A Classic Misinterpretation

“It’s Hard Work Behaving as a Credible Patient”

The Paradox of Patients’ Satisfaction with Inadequate Pain Management

The Scar Hypothesis

Opioid Addiction and Pseudo-addiction

Prosecuting Prescribers

The Invisible Hierarchy of Feeling

Pain Threshold and Pain Tolerance

Individual Pain Sensitivity

The Cellular Secret of the Chronic Pain Cycle

The Wonderful Dream That Pain Has Been Taken Away from Us

Pain Diary: I Try to Understand Science

IV. FINDING A VOICE: PAIN AS NARRATIVE

Finding a Voice

Inspiration

Suffering

Integrative and Disintegrative Pain

The Risks of Religious Belief

The Phoenix

The Feared-for Self, the Actual Self, and the Hoped-for Self

The Rustling of Strange Wings

Ghost of a Medical Meaning

The Difficult Patient

When Painkillers Create Pain

Sinister Ideas of Pathology

This Curse That I’m Living With

A Partner in Wellness

Pain Diary: I Wish for More Betterness

At the Will of the Body

More Betterness to Get

A Hundred Blessings

Fortune

The Crack Where the Light Comes In

Romantic and Physical Pain

Only Not Showing You My Devotion Is Painful

Kavadi

V. TO CURE THE MIND: PAIN AS PERCEPTION

What Is Pain?

The Demon in the Machine

Pain Perception and Pain Modulation

Expectation Rivals Nociception

The Magic Takes Place in Your Head

A Less Dire Narrative

Pain Diary: I Try to Change My Perception

The Anesthesia of Belief

Cognitive Control over Neuroplasticity

Terra Incognita

A Universe of Hurt

Right Next Door

Notes

Acknowledgments

Index

THE PAIN CHRONICLES

INTRODUCTION: THE TELEGRAM

Imagine, as I imagine, a community of consumptives, coughing blood in a progressive nineteenth-century mountain sanatorium. Their well-regulated hospital life includes the most modern of treatment protocols: antiquated purging and bloodletting have been replaced by mineral baths, good nutrition, mountain air, and heliotherapy—sunbathing. Yet attitudes have not evolved very far from those of Hippocrates, who, in the fifth century
B.C.E.
, warned colleagues against visiting patients who had advanced consumption (the most prevalent disease of the time), because their inevitable deaths might damage the physicians’ reputations.

Through the centuries, there were many theories about consumption’s causes—heredity, evil spirits, vampirism, vapors, sewage, swampland odors, and corruption within the body. In the nineteenth century a fashionable conception of the disease was as a spiritualizing struggle between the body and the soul, in which the mortal flesh was slowly consumed in a way that heightened both beauty and creativity. But in the spring of 1882, a German physician identified
Mycobacterium tuberculosis.
Four thousand years of myth vanished in a moment as the bacterium materialized under the microscope. Although everything about the presentation of the disease, from sufferers’ glittering eyes to their disappearing flesh, had lent itself to metaphor, science abruptly dissented. Consumption became tuberculosis—a disease, not a state of being. Although the cure—antibiotics—was still half a century away, there was a diagnosis.

In
Illness as Metaphor
, Susan Sontag describes the transformation of consumption into TB as an archetypal example of a process by which diseases are understood metaphorically until their pathology becomes clear. The philosopher Michel Foucault captures this process in postulating that modern medicine began when doctors stopped asking patients, “What is the matter with you?”—a question that invited a complex personal response—and began asking, “Where does it hurt?” instead, a question that focuses solely on biology.

Although these processes are driven by scientific discoveries, social attitudes have to shift in order for science to investigate. Moreover, people have to believe scientific findings before they act upon them. From a distance, one paradigm seems to succeed another in the blink of history’s eye, but in their era they surrender slowly, and lives are lived and lost in the interim. Ideas can be slow to catch on: germ theory, for example, had been articulated but not popularized by the time of the Civil War, so soldiers blithely drank from rivers that other regiments used as toilets upstream. And there are always naysayers: bloodletting was discredited years before George Washington was bled on his deathbed by his physicians. Nitrous oxide and ether (the gases used for the first form of surgical anesthesia) had been discovered decades before anyone thought to employ them during agonizing operations.

How did the news of the discovery of tuberculosis arrive at the sanatorium? Did the residents read of it in the newspaper? Did their relatives pay a visit or send a telegram?
It’s not you—it’s a bacterium! Strange—you seemed so consumptive.
Did the news make them rethink the story of their sickness and realize it had nothing to do with a spiritualizing struggle? Or did they regard the news in the way one takes in scientific advances about black holes or the bones of primitive man—interesting, but personally irrelevant? After all, there was still no cure. Or perhaps the news never reached the sanatorium, and the consumptives perished on the magic mountain, imprisoned not only by disease, but by a host of lonely meanings.

Wouldn’t understanding the nature of their suffering itself have been therapeutic? Even in the absence of treatment, epileptics may benefit from knowing that they are not possessed by spirits, and it may help depressed people to know that their condition is not a failure of character. Surely the consumptives would have felt relief, mixed with wonder, to finally know what their disease was—and what it was not. It was not a curse. It was not an expression of personality or a punishment. For better and for worse, it was and is a disease.

To be in physical pain is to find yourself in a different realm—a state of being unlike any other, a magic mountain as far removed from the familiar world as a dreamscape. Usually, pain subsides; one wakes from it as from a nightmare, trying to forget it as quickly as possible. But what of pain that persists? The longer it endures, the more excruciating the exile becomes.
Will you ever go home?
you begin to wonder, home to your normal body, thoughts, life?

Ordinarily, pain is protective—a finely wired system warning the body of tissue damage or disease and enforcing rest for the bone to knit or the fever to run its course. This is known as acute pain; when the tissue heals, the pain disappears. When pain persists long after it has served its function, however, it transforms into the pathology of chronic pain. Chronic pain is the fraction of pain that nature cannot heal, that does not resolve over time, but worsens. It can begin in many ways—as trivial as a minor injury or as grave as cancer or gangrene. Eventually, the tissue heals, the diseased limb is amputated, or the cancer goes into remission, and yet the pain continues and begins to assume a life of its own.

The doctor assures the patient she is fine, but the pain worsens, the body sensitizes, and other parts begin to hurt, too. She has trouble sleeping; she stumbles through her days. Her sense of her body as a source of pleasure changes to a sense of it as a source of pain. She feels haunted, persecuted by an unseen tormentor. Depression sets in. It feels wrong . . . maddening . . . delusional. She tries to describe her torment, but others respond with skepticism or contempt. She consults doctors, to no avail. Her original affliction—whatever it may have been—has been superseded by the new disease of pain.

Chronic pain is a specter in our time: a serious, widespread, misunderstood, misdiagnosed, and undertreated disease. Estimates vary widely, but a 2009 report by the Mayday Fund, a nonprofit group, found that chronic pain afflicts more than 70 million Americans and costs the economy more than $100 billion per year. Another study in the United States indicates that as much as 44 percent of the population experiences pain on a regular basis, and nearly one in five people describes himself or herself as having had pain for three months or more. Much of the degraded quality of life from diseases such as cancer, diabetes, multiple sclerosis, and arthritis stems from persistent pain. In one survey, most chronic pain patients said that their pain was “a normal part of their medical condition and something with which they must live.” One-third of the patients said that their pain’s severity was “sometimes so bad [they] want to die.” Almost one-half said they would spend all they have on treatment if they could be assured it would banish their pain.

Yet treatment for chronic pain is often inadequate. In part, this is because it is only in recent years that chronic pain has been understood to be a condition with a distinct neuropathology—untreated pain can eventually rewrite the central nervous system, causing pathological changes to the brain and spinal cord that in turn cause greater pain—though this new understanding is not widely known. Chronic pain is sometimes defined as continuous pain that lasts longer than six months, yet chronic is not ordinary pain that endures, but a different condition, in the same way an alcoholic’s drinking differs from that of a social drinker. It is not the duration of pain that characterizes chronic pain, but the inability of the body to restore normal functioning.

“The history of man is the history of pain,” declares Pnin, a character in a Nabokov novel of the same name (a name that is itself just one letter removed from the word
pain
). The longing to understand physical pain and to alleviate it has threaded through all of human history, from the earliest records of thought. No single discipline seems adequate to address or represent pain, because every lens through which one tries to examine it—personal, cultural, historical, scientific, medical, religious, philosophical, artistic, literary—fractures pain into a different light.

In the Sanskrit Hindu scripture, the
Bhagavad Gita
, the god Krishna speaks of “life, which is the place of pain . . .” What is pain whose place in life is so central? To unravel its riddles, we must look at the ways in which pain has been understood and interpreted. These understandings seem to fall into three basic paradigms. First, there is what we might call the premodern view, in which pain is never simply a bodily experience, but reflects a spiritual realm suffused with meanings and metaphors, from the pain-causing demons of ancient Mesopotamia who spread their wings wide, to the Judeo-Christian tradition in which pain begins with the expulsion from Eden. “Thorns also and thistles shall [the ground] bring forth to thee,” God condemns Adam—a curse that is transformed, in Christianity, into a means of redemption.

Pain was also seen as a force that could be used for positive spiritual transformation. Pilgrims and ascetics in many different traditions elected to draw closer to God by undergoing painful rites, and martyrs embraced painful death. Belief in pain’s spiritual properties made pain the critical instrument of jurisprudence in the premodern world—not only as the appropriate punishment for crimes but also for determining guilt, both through torture and through the curious precursor to the jury trial known as “trial by ordeal,” in which the suspects were subjected to painful rituals (such as holding a hot iron, walking on hot coals, or plunging a hand into boiling water). If God failed to protect them from pain, they were deemed guilty.

The premodern paradigm is not entirely obsolete; although it has been supplanted, it has not been expunged. To understand our attitudes toward pain today, we must understand the legacy we inherit from five thousand years’ worth of struggle to make sense of this mortal condition. Suffering was—and still is—regarded by many as something that can, must, or ought to be endured. Although it is difficult to believe, the invention of surgical anesthesia (through the inhalation of ether gas) by an American dentist in the mid-nineteenth century was controversial at the time. Many agreed with the president of the American Dental Association, who declared, “I am against these satanic agencies which prevent men from going through what God intended them to go through.” The use of anesthesia during childbirth was especially controversial, as it was believed to circumvent the divine injunction to bring forth children in pain. Even after the invention of anesthesia, many surgeons continued to perform surgery without it, including experimental surgeries on slave women who were said not to suffer the same pain as their mistresses.

The premodern understanding of pain was replaced in the mid-nineteenth century by a new biological view of pain as simple, mechanistic sensation: a function of nerve endings that send predictable pain signals to the brain, which responds passively in turn with a proportionate amount of pain. Influenced by Darwin, the biological view of pain saw all pain as protective—serving, usefully, as a warning of tissue damage. The remedy for pain seemed plain: treat the disease or injury, and the pain should take care of itself. This model prevailed for most of the twentieth century and, indeed, is still commonly held, not only by patients but also by physicians.

While this view has helped us make strides in managing
acute
pain and spurred on the development of anesthesia, it has impeded and continues to impede our ability to recognize and understand
chronic
pain. It cannot explain why some pain continues to worsen of its own accord. Even for acute pain, the model does not suffice, for it cannot explain why in a lab experiment the same heat stimulus may hurt one person more than another, or why injuries that are severe may hurt someone only mildly while mild injuries may be agonizing for others. Moreover, the model cannot explain treatments that target
only
the mind, such as the forgotten nineteenth-century technique of mesmerism (a form of hypnotism), so effective that it enabled surgery to be performed painlessly.