The Lonely Patient - Prologue

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The Lonely Patient - Prologue

By MICHAEL STEIN

Published: March 26, 2007

http://www.nytimes.com/2007/03/26/health/27books-excerpt1.html?

pagewanted=1 & _r=1

My brother-in-law was a sculptor. For almost a year, he had

been having vague symptoms, bloody noses and spots of numbness on

the roof of his mouth, which he blamed on mold in his studio, the

vagaries of New England weather, and a lifetime of exposure to epoxy-

laden materials. In late March, we shared our weekly midday meal at

nie's Luncheonette. We each ordered the usual. For , it

was onion rings, which left his lips shiny, and a chocolate shake. I

had a turkey sandwich, mashed potatoes, and water with a slice of

lemon. As we skidded home in the snow, told me that he had a

rare form of sinus cancer. He looked no different than he had the

week before: wild-haired and thick-nosed at fifty, an expressive

face with deep lines slanting from his nostrils to the corners of

his mouth. His hands, gripping the steering wheel, were large and

knotty. His size had intimidated me as a boy; now as then, his

dramatic voice was overshadowed by his yet bigger ideas about almost

everything. I had always thought of as invincible, so at

first I didn't believe he'd understood correctly what he'd been told.

Then I realized he had just told me the impossible truth. He seemed

to have no more to say about it, and I had a sudden, panicky feeling

that he was waiting for me to say something medical, to give him

advice. But I was speechless, trying to collect what I knew about

patients, cancer, the pervasive possibility of death, the experience

of illness, and all the comforting things I'd told the strangers I

had cared for in the five years since completing my medical

training. I was a young doctor then and didn't know what to say. I

didn't want him to die. I wanted to reassure my brother-in-law,

offer him uncomplicated hope, as well as quell my already rising

sorrow.

At the time, I was a general internist practicing at an innercity

academic hospital, treating patients with AIDS and heart disease,

colds, asthma, and chronic pain. I saw some of these patients in

their homes; some in my dingy, green-carpeted, yellow-aired clinic;

and some on the overcrowded hospital wards. During these early years

of practice, I had, perhaps, concentrated too much on how people

become ill and how their problems can be " fixed, " without trying to

imagine what it's like to be ill. Whether out of self-pity or self-

negligence, or because I was caring for too many patients in too

little time, or because of the daily difficulty of seeing pain and

terror, already I was no longer attempting to understand what my

patients were communicating in gesture and expression, what was

unsaid: why they were unhappy, what was bothering them most, how

their bodies and lives had changed since they became sick.

Doctors feel obliged to strike the right emotional balance with

patients: not too harsh, not too pitying. We are trained to hear and

give grim news. From the first days of anatomy lab, we are inclined,

even taught, to shut down. Rather than disclosing too much about

ourselves - our judgments and contempt, our moods and fear - we are

expected to keep our distance from patients. We deny that this

distancing is a choice. Presented as a necessary rule, a requirement

of composure, this self-protection disappoints patients interested

in the interior world of their illness, the emotional life that's

not on show. As doctors, we can't help being moved by the heartbreak

of the individual medical moment, yet we never forget that patients

are also examples of minutely studied biological processes. We

refuse to be either impressed or surprised as we apply ph

Brodsky's suggestion: " Keep eyes wide open, not so much in

wonderment, or poised for revelation as in look-out for danger. "

Early in my career, with the repetition of seeing twenty patients a

day in a small exam room, I became like one of my ill patients: I

had entered a world of black and white, a world without nuance, with

only a two-word language - " sick " and " well. " Gone were subtle

gradations of color and dialect that an artist would appreciate.

Then got sick, and in the car that day I longed for a rich,

fully formed vocabulary with which to speak to him about his illness

and to help me understand it. I didn't have one.

The challenges of communication were well known to me. I had

published two novels, been nominated for awards, and even taken up

the subject of medicine in my second book. bragged to

everyone that it was the best book ever written about doctors, even

though he had never read it. Still, before that drive from nie's

Luncheonette, I had never fully applied myself to the notion of

illness, to traveling mindfully across its terrain. I was on

automatic, doing my work with the cool precision of debridement. I

spoke the language of medicine fluently but hadn't tried very hard

to learn the idiom of the ill. I always thought that a doctor in

good health could never quite appreciate illness. Each patient's

emotions seemed just slightly out of my reach. I was inarticulate

about the patient's experience of illness, but I was also holding

back, in part because of my training and in part because I believed

that I didn't have the right to ask or intrude.

My formal training in talking with patients took place at the end

of the second year of medical school when I finally put my textbooks

aside and began the requisite course on medical interviewing.

Clinical information-gathering, I learned, has its own stiff anatomy

and order—chief complaint, history of present illness, past medical

history, review of symptoms. I memorized the list of topics to be

covered when speaking with a new patient and watched my supervisor,

a senior doctor, perform a series of interviews. Finally, the day

arrived. My teacher escorted me to the bedside of an elderly woman

with heart failure and sat in a chair behind me. Glancing down at my

notes so as not to forget any important details, I spoke with this

patient.

Caught up in the excitement of my first encounter, trying hard to

keep moving through my list of questions and at the same time to

write down her responses, I sometimes neglected to talk slowly or to

nod in sympathy, simple human behaviors that, I was to learn,

patients depend on.

For years after this course, my interviewing style remained close to

what I had practiced as a student. Only as my experience with

patients increased did I begin to understand that trying to make a

patient feel better sometimes only makes him feel worse. Intent on

teaching me the basics in four weeks, my teacher and I never had the

opportunity to discuss how difficult it is to use humor to disarm a

patient, or how to foster an ill person's determination, or how to

make a patient believe he still rules his own body.

Illness arrives, literally, out of nowhere. Newly ill, the patient

immediately recalls the sick days of childhood, the afternoons

asleep and the midnights awake, the disturbance of the natural daily

rhythm. As an adult, illness makes him feel out of place,

unaccountably absent, far outside existence. The patient expects

illness to enforce a sense of restlessness and fluidity, but groggy

and passive, he soon feels taken over, trapped, imprisoned. The

patient expects to be dependent on others, but not the humiliation

and indignity this sometimes brings. After a very short time, the

patient wants to pretend he's well, to look the other way rather

than face the new reality that the body can be hurt, attacked,

scarred, that he and his body can fail.

Patients cannot put into words the extravagant difference between

how they once imagined they would handle illness and how they

actually do once it is upon them. Illness is repressive. The ill

person forces himself to feel calm, to silence the high keening of

distress. He is determined to keep his turmoil dormant. There is a

palpable denial of emotion as the patient resists feeling anything

but bewilderment. Yet emotions creep up and first emerge in the

small clearings of idle time, and when they do, patients have

difficulty identifying and describing these new and uncomfortable

emotional states that have arrived with illness.

The patient holds back, despite an urge for self-expression, because

he doesn't want to complain and he doesn't want to worry himself;

being completely candid makes him vulnerable. That day in the car

with , the experience of being a doctor, of caring for the

sick, and of trying to anticipate the ill person's sensations,

thoughts, expectations, and exasperation became poignant and

problematic and meaningful to me as it never had before. It's taken

me the six years since 's death to grasp what it takes out of

one to be a patient and how doctors and caregivers might help

recognize and restore what is lost during illness.

That day, when I looked over at , tiny tremblings in his

facial muscles registered the aftershocks of telling me his

diagnosis. I should have told him then that a patient's version of

the world changes quickly when he becomes sick. He should expect the

desire to continue an undisturbed, normal life to seize him harder

each day. Whereas before, the patient may have lived a life

dominated by the pursuit of happiness, suddenly his only pursuit is

health. The ill person becomes a new " self. " Yet in the midst of

illness, the patient is unable to explain that his old identity has

been transformed, stolen. He's been issued a new identity card, the

diagnosis on it. He slips it into his wallet, but it isn't his, it

isn't really him. I should have explained to that the sudden

tenuousness of the version of the world before illness would leave

him with questions: When illness goes away, will anything resemble

what I once knew? Will my life ever be the same after this? Will I

ever feel like myself again?

Before was sick, the idea that I could teach him anything

was far from his mind, and mine. He was a natural teacher; he was

the eccentric homebody who stayed in his studio and worked and

listened to the radio, absorbing everything he heard and questioning

most of it. You came to him. If I ever offered my opinion about art

or finance or Boston sports teams - subjects he was expert at -- I

often felt like he was waiting for me to finish making a fool of

myself so he could tell me what was what.

He was willing to be surprised -- he expected you to bring him

things, pieces of information, gossip -- but if you were going to

discuss his subjects, you'd better come prepared. His wife, my

oldest sister, and their daughter offered a not-so-gentle opposition

to him, but I often didn't mind simply listening. was

exuberant, fierce, energized by talk and a challenge. Beyond

embarrassment, he was difficult to shame for his bad behavior, his

rudeness, or his increasing querulousness when the New England

Patriots were losing and you were boring him. I was a little boy and

was twenty-nine years old when we first met, and although he

was loving and generous to me, he also, later, teasingly doubted

that I had ever really become a doctor: " How can an eight-year-old

be a doctor? " he asked. When he told me what the biopsies and scans

had shown, I could tell he'd gotten a sniff of catastrophe and he

hadn't liked it at all. He was quiet. As if he'd missed a turn,

took a long, winding route back from nie's, driving down

streets I'd never been on, past unfamiliar houses. Sickness, it

occurred to me, is a foreign kingdom, an unrecognizable

neighborhood. We might prefer to stay home, but sooner or later each

of us is obliged, at least for a spell, to spend time in that other

place.

Perhaps already sensed where he was going. If illness is

like going to a different, disturbed country, then the experience of

illness -- moving through that land -- can be thought of as a kind

of travel. It is an odd sort of journey because the sick person

receives no invitation; he is suddenly, involuntarily, taken there.

The sick person wonders with mounting anxiety: What am I supposed to

do? What am I supposed to think? How long will I be forced to stay?

Who can I talk to? Why am I here? Where do I go next? Illness puts

him in contact with a primordial innocence that is dangerous during

travel. There are many risks apparent. Some are obvious. Death is

always lurking in the forest.

That the outcome of the travel is by nature ambiguous -- one hopes

for the best -- in itself causes patients to live with

vulnerability. Yet patients wonder what point there is in focusing

on illness when they're just passing through. They're not settling

here; they're just visiting, moving on, with their return tickets in

hand. This change is dramatic. Once arrived, one is immediately

ready to depart.

" One's native land has a sort of hopeless attraction, when one is

away, " D. H. Lawrence wrote, and anyone who is sick wants to go home

again, to that version of the body he knew. Yet illness, like all

travel, is an experience of jangling emotion, of moods and silence,

of transitory feelings. In this new country, there is a different

sense of time. Strict chronology is gone, replaced by what the

physician and writer Oliver Sacks has called " personal moments, life-

moments, crucial moments. " Illness does not proceed by design; each

step is unexpected and can come on suddenly.

In the car with that day, the unbreakable silence made it a

ruined, spoiled ride. Patients try not to linger on their anxieties

and often can't or won't discuss them, yet at some point the

undiscussed, unmentioned experiences of illness inevitably overtake

them. Illness is far more than a diagnosis to be treated—or not.

There is a particular alienation that illness brings. I have come to

understand that the ill person's distance from others is the most

profound experience of illness, and that this sense of other-ness --

of loneliness -- is more common in illness than any other emotion,

and more dangerous and disturbing.

Books: Dropping Detachment and Reconnecting to Patients (March 27,

2007)

And yet, perhaps, loneliness may also be alleviated. I wish I'd been

able to give the words and maps to move away from that place

where there is no company, where nobody can follow.

I wish I could have told the things I have said to patients

who came later, and what I describe in the chapters of this book. I

understand now that part of being a doctor is helping patients

interpret new feelings and providing them with the faded directions

back to their old lives or to the fi nal and feared destination of

death. Understanding the emotional cascade of illness would not only

help patients communicate with their health care providers,

families, and friends but also provide them with the vocabulary

necessary to describe their responses to illness. Patients may not

be able to control the malfunctioning of their bodies, but they can

have a chance to harness their ways of thinking.

Illness that is articulated may lead to feelings of coherence and

safety during stressful times and thus relieve the sense of

loneliness. A patient's capacity to carry on is critically dependent

on satisfying emotional needs for understanding, love, expression,

and respect. During this last decade, it has become commonplace to

hear celebrities speak of their colonoscopies, for our leaders to

have their hearts and prostates described in the newspaper, and for

cable channels to broadcast close-ups of surgery. But even today the

emotional side of illness is rarely mentioned. Thinking of ,

I have realized that during illness certain human experiences are

intensified, and four feelings in particular: betrayal, terror,

loss, and loneliness. Patients must change their relationship with

doctors and loved ones so that they are able to discuss these

feelings and avoid being taken over by them.

When we are ill, we are filled with a perplexed sense of difference -

- from what we were before, and from those around us -- and too

often this sense of difference is ignored at the risk of worsening

isolation. I want to tell all I know now, offering him

stories from my practice to get at what I've learned since his

death. I want to tell him about my mistakes and the harm I might

have done. would never have wanted me to produce a standard

series of clinical vignettes. He would want me to violate taboos, to

trespass in my storytelling. He would not want me to focus on the

history of a particular disease, or on a discussion of recent

treatment advances, or even on the ethical problems that certain

patient encounters bring up. Instead, he would want to hear about

the more philosophical aspects of illness, about the meaning of

illness, about illness as a different state, and about this idea of

the " new self. " We are interested in illness, either our own or

others', because all of us will be ill at some time in our lives.

The Lonely Patient opens a new dialogue about our expectations of

health and, after its shocking disappearance, of illness, our hopes,

what we're capable of bearing, and our mortality. I'm convinced that

understood fairly quickly that he was about to be taken out

of his daily routine and thrust into a new landscape. (He hated most

landscape painters, except for the Hudson School's Ralph Blakelock,

whose work was dark and swirling.) If there is even the slightest

chance of understanding what goes on in the land of illness,

would want me to reach across the borders and bring back both a

unique medical perspective and a writer's understanding of

narrative -- the story of sickness as experienced by the patient.