Examining the Inner Life of the 'Lonely Patient'

In his new book, Dr. Michael Stein uses the stories of patients, including that of his terminally ill brother-in-law, to explore the personal side of sickness. Stein, a professor of medicine and community health at Brown University Medical School, discusses The Lonely Patient: How We Experience Illness.

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Excerpt: 'The Lonely Patient'

'The Lonely Patient'

Chapter One

Betrayal

As soon as the patient crosses into the land of sickness, she realizes she has been abducted. Many of her kidnappers are wearing masks and head coverings. They do not tell her where she's going. They carry unidentifiable instruments that could be weapons and move at a frantic pace in unrecognizable patterns. According to Oliver Sacks, she is in "No-land, Nowhere," and has "fallen off the map, the world of the knowable."

There had been no warning that Joanna was about to be stolen into a world of rioting, but when she began feeling pain, she understood quickly that she had been dragged into a fight she didn't start. She felt she had been taken over and knew intuitively that she had to protect herself from her illness. The feeling of betrayal intensified when she realized that there was no villain; rather, it was her body that had turned on her. The arrival of Joanna's pain and the illness that caused it interrupted the continuous state of her body in health. The foundation, the presumption of the music of the everyday, had been undermined. Her body was no longer an ally. When she was healthy, the availability of her body when she needed it had given her a sense of security and confidence. This assurance made it possible to play sports, make money, paint, climb ladders, make love. Her body had always provided a secure base, but once her body became sick, that security had been breached.

Joanna felt the world through her body: when she bathed, watered her garden, tipped back her chair, reached for a spoon, brushed her teeth, bowed from the waist, tumbled into bed. Like all of us, her unique, irreplaceable, and healthy body was the reference from which she made sense of every experience. Joanna took this so much for granted that illness felt like a betrayal. The world lost meaning, or at least she discovered that the meaning of her world was based on health to a greater extent than she had supposed. The meaning of life became simplified: I am my body, my body is sick, I am sickness. Life's stability had been threatened. The journey to the state of illness had been short and ruinous.

Often the first sign of the body's betrayal is the arrival of pain, and from the outset the most crucial fact about pain is its immediacy. Patients in pain think about nothing but that. They wake up thinking about pain. They go to sleep thinking about it. In The Anatomy Lesson, Philip Roth wrote that his protagonist, Nathan Zuckerman, goes "back and back to the obsession" of not being in pain. Patients in pain wait for it to go away a thousand times a day, and they wait for it to return. When it's gone, even for a minute, they can't remember it or re-create it. But when present, pain beseiges every thought. It "circles back on itself, diminishing all else," Roth wrote. Patients are enfeebled by pain, engrossed by it. In pain, there can be no sense of well-being. The idea of living forever never occurs to someone in pain, Roth wrote. Pain cornered Zuckerman, bound and gagged him, ground him down, took away any imaginative power he had. Pain is an unforgettable part of the state of illness, and any patient would agree to give up some of their life if they could escape from it.

Joanna came to my office one afternoon in the first week of December, a scarf wrapped high around her face, ice melting from her eyelashes where her breath had condensed. She hadn't been to my office in well over a year; at that last visit, according to the notes I kept in a purple chart, she'd had a nasty cold. Now she moved slowly, as if old, although she had just turned forty since I'd last seen her. She had an odd beauty: long arms and legs, dark eyes and eyebrows, dimples. She wore a silver ring on her left thumb and was dressed stylishly. Joanna's clothes had always been a tactile language of sashes and ribbons and tassels, fields of metallic and mesh fabrics separated by stitched borders, zippers, off-line buttons. Dressed for winter, Joanna wore black corduroy pants, a quilted scarlet jacket, an indigo crepe blouse, and black sneakers with dark red racing stripes and treads that climbed over the front of her toes. She stared at the new landscape painting I'd put up recently and at the wall-mounted blood pressure cuff and ophthalmic devices, her eyes stopping at the green examining table at the far end of the room. As she took off her coat and scarf, she observed the tall window, which let in northern light that changed as fast as the expressions of the patients I saw there every day.

"You have to help me" were her first words.

"I'll try," I answered.

As a young doctor, I found my patients' pain—the chronically swollen joints of rheumatoid arthritis, the muscle spasms of opiate withdrawal, the fluid that inflamed the lining of the lung—to be unknowable; it felt far away, and I was comfortable keeping it there. In some small way, I feared that if I recognized pain, if it came too close, it would somehow cling to me. Even if I was not afraid for myself, I did not like to admit that patients who came to me again and again for relief sometimes bored me. Pain is always new to patients but repetitive to doctors, Zuckerman knew. Everyone gets used to the patient's pain except the patient. It's always original to the patient.

After Joanna sat in the molded black chair between the side of my desk and the office door (all books and papers were pushed to the nonpatient end of my desk, clearing space for Kleenex and my phone), she told me, "Three months ago, I began to have this burning feeling across the bottoms of both feet." She was a lively and striking woman, but she sounded tired when she explained, almost apologetically, that she had been to see several doctors about her pain, starting with a podiatrist in early October. "He said, 'I want to X-ray your feet to make sure nothing's broken,'" Joanna reported. "'I want to see if there's a broken bone in there.' But I hadn't had an injury, and the problem was in both my feet. Of course nothing was broken."

Excerpted from The Lonely Patient by Michael Stein. All rights reserved. No part of this book may be used or reproduced without written permission from HarperCollins Publishers, 10 East 53rd Street, New York, NY 10022

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How We Experience Illness

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