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CHAPTER
ONE
Chapter
One: THE BERMUDA TRIANGLE
Mary
was a Native woman in her early forties, slight of stature,
gentle and deferential in manner. She had been my patient
for eight years, along with her husband and three children.
There was a shyness in her smile, a touch of self-deprecation.
She laughed easily. When her ever-youthful face brightened
it was impossible not to respond in kind. My heart still
warms–and constricts with sorrow--when I think of
Mary.
Mary and I had never talked much until the illness that
was to take her life gave its first signals. The beginning
seemed innocent enough: a sewing-needle puncture wound
on a fingertip failed over several months to heal. The
problem was traced to Raynaud's phenomenon, in which the
small arteries supplying the fingers are narrowed, depriving
the tissues of oxygen. Gangrene can set in, and unfortunately
this was the case for Mary. Despite several hospitalizations
and surgical procedures, she was begging within a year
for an amputation to rid her of the throbbing ache in
her finger. By the time she got her wish the disease was
rampant and powerful narcotics were inadequate in the
face of her constant pain.
Raynaud's can occur independently or in the wake of other
disorders. Smokers are at greater risk, and Mary had been
a heavy smoker since her teenage years. I hoped that if
she quit, normal blood flow might return to her fingers.
After many relapses she finally succeeded. Unfortunately,
the Raynaud’s proved to be the harbinger of something
far worse: Mary was diagnosed with scleroderma, one of
the autoimmune diseases, which include rheumatoid arthritis,
ulcerative colitis, systemic lupus erythematosus (SLE),
and many other conditions that are not always recognized
to be autoimmune in origin, such as diabetes, multiple
sclerosis and possibly even Alzheimer’s disease.
Common to them all is an attack by one's own immune system
against the body, causing damage to joints, connective
tissue or to almost any organ whether it be the eyes,
the nerves, the skin, the intestines, the liver, or the
brain. In scleroderma (from the Greek word meaning “hardened
skin" ) the immune system's suicidal assault results
in a stiffening of the skin, esophagus, heart, and tissues
in the lungs and elsewhere.
What creates this civil war inside the body?
Medical textbooks take an exclusively biological view.
In a few isolated cases toxins are mentioned as causative
factors, but for the most part a genetic predisposition
is assumed to be largely responsible. Medical practice
reflects this narrowly physical mindset. Neither the specialists
nor I as her family doctor had ever thought to consider
what in Mary's particular experiences might also have
contributed to her illness. None of us expressed curiosity
about her psychological state before the onset of the
disease, or how this influenced its course and final outcome.
We simply treated each of her physical symptoms as they
presented themselves: medications for inflammation and
pain, operations to remove gangrenous tissue and to improve
blood supply, physiotherapy to restore mobility.
One day, almost on a whim, in response to a whisper of
intuition that she needed to be heard, I invited Mary
to make an hour-long appointment so that she would have
the opportunity to tell me something about herself and
her life. When she began to talk, it was a revelation.
Beneath her meek and diffident manner was a vast store
of repressed emotion. Mary had been abused as a child,
abandoned and shuttled from one foster home to another.
She recalled huddling in the attic at the age of seven,
cradling her younger sisters in her arms, while her drunken
foster parents fought and yelled below. "I was so
scared all the time," she said, "but as a seven-ear-old
I had to protect my sisters. And no one protected me."
She had never revealed these traumas before, not even
to her husband of twenty years. She had learned not to
express her feelings about anything to anyone, including
herself. To be self-expressive, vulnerable and questioning
in her childhood would have put her at risk. Her security
lay in considering other people's feelings, never her
own. She was trapped in the role forced on her as a child,
unaware that she herself had the right to be taken care
of, to be listened to, to be thought worthy of attention.
Mary described herself as being incapable of saying no,
compulsively taking responsibility for the needs of others.
Her major concern continued to be her husband and her
nearly adult children, even as her illness became more
grave. Was the scleroderma her body's way of finally rejecting
this all-encompassing dutifulness?
Perhaps her body was doing what her mind could not: throwing
off the relentless expectation that had been first imposed
on the child and now was self-imposed in the adult—placing
others above herself. I suggested as much in my very first
article as medical columnist for The Globe and Mail in
1993. "When we have been prevented from learning
how to say no," I wrote, " our bodies may end
up saying it for us." I cited some of the medical
literature discussing the negative effects of stress on
the immune system.
The idea that people’s emotional coping style can
be a factor in scleroderma or other chronic conditions
is anathema to some physicians. A rheumatic diseases specialist
at a major Canadian hospital submitted a scathing letter
to the editor denouncing both my article and the newspaper
for printing it. I was inexperienced, she charged, and
had done no research.
That a specialist would dismiss the link between body
and mind was not astonishing. Dualism—cleaving into
two that which is one—colours all our beliefs on
health and illness. We attempt to understand the body
in isolation from the mind. We want to describe human
beings—healthy or otherwise—as though they
function in isolation from the environment in which they
develop, live, work, play, love and die. These are the
built-in, hidden biases of the medical orthodoxy most
physicians absorb during their training and carry into
their practice.
Unlike many other disciplines, medicine has yet to assimilate
an important lesson of Einstein’s theory of relativity:
that the position of an observer will influence the phenomenon
being observed and affect the results of the observation.
The unexamined assumptions of the scientist both determine
and limit what he or she will discover, as the pioneering
Czech-Canadian stress researcher Hans Selye pointed out.
“Most people do not fully realize to what extent
the spirit of scientific research and the lessons learned
from it depend upon the personal viewpoints of the discoverers,”
he wrote in The Stress of Life. “In an age so largely
dependent upon science and scientists, this fundamental
point deserves special attention.” In that honest
and self-revealing assessment Selye, himself a physician,
expressed a truth that even now, a quarter century later,
few people grasp.
The more specialized doctors become, the more they know
about a body part or organ and the less they tend to understand
the human being in whom that part or organ resides. The
people I interviewed for this book reported nearly unanimously
that neither their specialists nor their family doctors
had ever invited them to explore the personal, subjective
content of their lives. If anything, they felt that such
a dialogue was discouraged in most of their contacts with
the medical profession. In talking with my specialist
colleagues about these very same patients, I found that
after even after many years of treating a person, a doctor
could remain quite in the dark about the patient’s
life and experience outside the narrow boundaries of illness.
In this volume I set out to write about the effects of
stress on health, particularly of the hidden stresses
we all generate from our early programming, a pattern
so deep and so subtle that it feels like a part of our
real selves. Although I have presented as much of the
available scientific evidence as seemed reasonable in
a work for the lay public, the heart of the book—for
me, at least—is formed by the individual histories
I have been able to share with the readers. It so happens
that those histories will also be seen as the least persuasive
to those who regard such evidence as “anecdotal.”
Only an intellectual Luddite would deny the enormous benefits
that have accrued to humankind from the scrupulous application
of scientific methods. But not all essential information
can be confirmed in the laboratory or by modern statistical
analysis. Not all aspects of illness can be reduced to
facts verified by double-blind studies and by the strictest
scientific techniques. “Medicine tells us as much
about the meaningful performance of healing, suffering,
and dying as chemical analysis tells us about the aesthetic
value of pottery,” Ivan Ilyich wrote in Limits to
Medicine. We confine ourselves to a narrow realm indeed
if we exclude from accepted knowledge the contributions
of human experience and insight.
We have lost something. In 1892 the Canadian William Osler,
one of the greatest physicians of all time, suspected
rheumatoid arthritis—a condition related to scleroderma--to
be a stress-related disorder. Today rheumatology all but
ignores that wisdom, despite the supporting scientific
evidence accumulated in the 110 years since Osler first
published his text. That is where the narrow scientific
approach has brought the practice of medicine. Elevating
modern science to be the final arbiter of our sufferings,
we have been too eager to discard the insights of previous
ages.
As the American psychologist Ross Buck has pointed out,
until the advent of modern medical technology and of scientific
pharmacology, physicians had traditionally to rely on
“placebo” effects. They had to inspire in
each patient a confidence in his, the patient’s,
inner ability to heal. To be effective, a doctor had to
listen to the patient, to develop a relationship with
him, and he had also to trust his own intuitions. Those
are the qualities doctors seem to have lost as we have
come to rely almost exclusively on “objective”
measures, technology-based diagnostic methods and “scientific”
cures.
Thus the rebuke from the rheumatologist was not a surprise.
More of a jolt was another letter to the editor, a few
days later -- this time a supportive one--from Noel B.
Hershfield, clinical professor of medicine at the University
of Calgary: “The new discipline of psychoneuroimmunology
has now matured to the point where there is compelling
evidence, advanced by scientists from many fields, that
an intimate relationship exists between the brain and
the immune system... An individual's emotional makeup,
and the response to continued stress may indeed be causative
in the many diseases that medicine treats but whose [origin]
is not yet known--diseases such as scleroderma, and the
vast majority of rheumatic disorders, the inflammatory
bowel disorders, diabetes, multiple sclerosis, and legions
of other conditions which are represented in each medical
subspecialty.”
The surprising revelation in this letter was the existence
of a new field of medicine. What is psychoneuroimmunology?
As I learned, it is no less than the science of the interactions
of mind and body, the indissoluble unity of emotions and
physiology in human development and throughout life in
health and illness. That dauntingly complicated word means
simply that this discipline studies the ways that the
psyche--the mind and its content of emotions—profoundly
interacts with the body's nervous system and how both
of them, in turn, form an essential link with our immune
defences. Some have called this new field psychoneuroimmunoendocrinology
to indicate that the endocrine, or hormonal, apparatus
is also a part of our system of whole body response. Innovative
research is uncovering just how these links function all
the way down to the cellular level. We are discovering
the scientific basis of what we have known before and
have forgotten, to our great loss.
Many doctors over the centuries came to understand that
emotions are deeply implicated in the causation of illness
or in the restoration of health. They did research, wrote
books and challenged the reigning medical ideology, but
repeatedly their ideas, explorations and insights vanished
in a sort of medical Bermuda Triangle. The understanding
of the mind-body connection achieved by previous generations
of doctors and scientists disappeared without a trace,
as if it had never seen daylight.
A 1985 editorial in the august New England Journal of
Medicine could declare with magisterial self-assurance
that "it is time to acknowledge that our belief in
disease as a direct reflection of mental state is largely
folklore.”1
Such dismissals are no longer tenable. Psychoneuroimmunology,
the new science Dr. Hershfield mentioned in his letter
to the The Globe and Mail, has come into its own, even
if its insights have yet to penetrate the world of medical
practice.
A cursory visit to medical libraries or to online sites
is enough to show the advancing tide of research papers,
journal articles and textbooks discussing the new knowledge.
Information has filtered down to many people in popular
books and magazines. The lay public, ahead of the professionals
in many ways and less shackled to old orthodoxies, finds
it less threatening to accept that we cannot be divided
up so easily and that the whole wondrous human organism
is more than simply the sum of its parts.
Our immune system does not exist in isolation from daily
experience. For example, the immune defences that normally
function in healthy young people have been shown to be
suppressed in medical students under the pressure of final
examinations. Of even greater implication for their future
health and well being, the loneliest students suffered
the greatest negative impact on their immune systems.
Loneliness has been similarly associated with diminished
immune activity in a group of psychiatric inpatients.
Even if no further research evidence existed–though
there is plenty–one would have to consider the long-term
effects of chronic stress. The pressure of examinations
is obvious and short term, but many people unwittingly
spend their entire lives as if under the gaze of a powerful
and judgmental examiner whom they must please at all costs.
Many of us live, if not alone, then in emotionally inadequate
relationships that do not recognize or honour our deepest
needs. Isolation and stress affect many who may believe
their lives are quite satisfactory.
How may stress be transmuted into illness? Stress is a
complicated cascade of physical and biochemical responses
to powerful emotional stimuli. Physiologically, emotions
are themselves electrical, chemical and hormonal discharges
of the human nervous system. Emotions influence—and
are influenced by--the functioning of our major organs,
the integrity of our immune defences and the workings
of the many circulating biological substances that help
govern the body's physical states. When emotions are repressed,
as Mary had to do in her childhood search for security,
this inhibition disarms the body's defences against illness.
Repression—dissociating emotions from awareness
and relegating them to the unconscious realm--disorganizes
and confuses our physiological defences so that in some
people these defences go awry, becoming the destroyers
of health rather than its protectors.
During the seven years I was medical coordinator of the
Palliative Care Unit at Vancouver Hospital, I saw many
patients with chronic illness whose emotional histories
resembled Mary's. Similar dynamics and ways of coping
were present in the people who came to us for palliation
with cancers or degenerative neurological processes like
amyotrophic lateral sclerosis [or ALS, also known in North
America as Lou Gehrig’s disease, after the great
American basebell player who succumbed to it (and in Britain
as motor neuron disease.) In my private family practice
I observed these same patterns in people I treated for
multiple sclerosis, inflammatory ailments of the bowel
such as ulcerative colitis and Crohn's disease, chronic
fatigue syndrome, autoimmune disorders, fibromyalgia,
migraine, skin disorders, endometriosis and many other
conditions. In important areas of their lives, almost
none of my patients with serious disease had ever learned
to say no. If some people's personalities and circumstances
appeared very different from Mary's on the surface, the
underlying emotional repression was an ever-present factor.
One of the terminally ill patients under my care was a
middle-aged man, chief executive of a company that marketed
shark cartilage as a treatment for cancer. By the time
he was admitted to our unit his own recently diagnosed
cancer had spread throughout his body. He continued to
eat shark cartilage almost to the day of his death, but
not because he any longer believed in its value. It smelled
foul–the offensive stench was noticeable even at
some distance away-- and I could only imagine what it
tasted like. “I hate it,” he told me, “but
my business partner would be so disappointed if I stopped.”
I convinced him that he had every right to live his last
days without feeling responsible for someone else’s
disappointment.
It is a sensitive matter to raise the possibility that
the way people have been conditioned to live their lives
may contribute to their illness. The connections between
behaviour and subsequent disease are obvious in the case
of, say, smoking and lung cancer–except perhaps
to tobacco industry executives. But such links are harder
to prove when it comes to emotions and the emergence of
multiple sclerosis or cancer of the breast or arthritis.
In addition to being stricken with disease, the patient
feels blamed for being the very person she is. “Why
are you writing this book?” said a fifty-two-year-
old university professor who has been treated for breast
cancer. In a voice edged with anger she told me, “I
got cancer because of my genes, not because of anything
I did.”
"The view of sickness and death as a personal failure
is a particularly unfortunate form of blaming the victim,"
charged the 1985 editorial in The New England Journal
of Medicine. "At a time when patients are already
burdened by disease, they should not be further burdened
by having to accept responsibility for the outcome."
We will return to this vexing question of assumed blame.
Here I will only remark that blame and failure are not
the issue. Such terms only cloud the picture. As we shall
see, blaming the sufferer--apart from being morally obtuse--is
completely unfounded from a scientific point of view.
The NEJM editorial confused blame and responsibility.
While all of us dread being blamed, we would all would
wish to be more responsible – that is, to have the
ability to respond with awareness to the circumstances
of our lives rather than just reacting. We want to be
the authoritative person in our own lives: in charge,
able to make the authentic decisions that affect us. There
is no true responsibility without awareness. One of the
weaknesses of the Western medical approach is that we
have made the physician the only authority, with the patient
too often a mere recipient of the treatment or cure. People
are deprived of the opportunity to become truly responsible.
None of us are to be blamed if we succumb to illness and
death. Any one of us might succumb at any time, but the
more we can learn about ourselves, the less prone we are
to become passive victims.
Mind and body links have to be seen not only for our understanding
of illness, but also for our understanding of health.
Dr. Robert Maunder, on the psychiatric faculty of the
University of Toronto, has written about the mind-body
interface in disease. “Trying to identify and to
answer the question of stress, “ he says, “is
more likely to lead to health than ignoring the question.”
In healing, every bit of information, every piece of the
truth may be crucial. If a link exists between emotions
and physiology, not to inform people of it will deprive
them of a powerful tool.
And here we confront the inadequacy of language. Even
to speak about links between mind and body is to imply
that two discrete entities are somehow connected to each
other. Yet in life there is no such separation; there
is no body that is not mind, and no mind that is not body.
The word mindbody has been suggested to convey the real
state of things.
Not even in the West is mindbody thinking completely new.
In one of Plato's dialogues Socrates quotes a Thracian
doctor’s criticism of his Greek colleagues: "This
is the reason why the cure of so many diseases is unknown
to the physicians of Hellas; they are ignorant of the
whole. For this is the great error of our day in the treatment
of the human body, that physicians separate the mind from
the body." You cannot split mind from body, said
Socrates-- nearly two and a half millenia before the advent
of psychoneuroimmunoendocrinology!
Writing When the Body Says No has done more than simply
confirm some of the insights I first articulated in my
article about Mary’s scleroderma. I have learned
much and have come to appreciate deeply the work of hundreds
of physicians, scientists, psychologists and researchers
who charted the previously unmapped terrain of mindbody.
Work on this book has also been an inner exploration of
the ways I have repressed my own emotions. I was prompted
to make this personal journey in response to a question
from a counsellor at the British Columbia Cancer Agency,
where I had gone to investigate the role of emotional
repression in cancer. In many people with malignancy there
seemed to be an automatic denial of psychic or physical
pain and of uncomfortable emotions like anger, sadness,
or rejection. “Just what is your personal connection
to the issue?” the counsellor asked me. “What
draws you to this particular topic?”
The question brought to mind an incident from seven years
ago. One evening I arrived to see my seventy-six-year-old
mother at the nursing home where she was a resident. She
had progressive muscular dystrophy, an inherited muscle-wasting
disease that runs in our family. Unable to even sit up
without assistance, she could no longer live at home.
Her three sons and their families visited her regularly
until her death, which occurred just as I began to write
this book.
I had a slight limp as I walked down the nursing home
corridor. That morning I had undergone surgery for a torn
cartilage in my knee, a consequence of ignoring what my
body had been telling me in the language of pain that
occurred each time I jogged on cement. As I opened the
door to my mother’s room, I automatically walked
with a nonchalant, normal gait to her bed to greet her.
The impulse to hide the limp was not conscious, and the
act was done before I was aware of it. Only later did
I wonder what exactly had prompted such an unnecessary
measure—unnecessary because my mother would have
calmly accepted that her fifty-one-year old son would
gimpy knee twelve hours post-surgery.
So what had happened? My automatic impulse to protect
my mother from my pain even in such an innocuous situation
was a deeply programmed reflex that had little to do with
the present needs of either of us. That self-suppression
was a memory—a re-enactment of a dynamic that had
been etched into my developing brain before I could possibly
be aware of it.
I am both a survivor and a child of the Nazi genocide,
having lived most of my first year in Budapest under Nazi
occupation. My maternal grandparents were killed in Auschwitz
when I was five months old; my aunt had also been deported
and was unheard from; and my father was in a forced labour
batallion in the service of the German and Hungarian armies.
My mother and I barely survived our months in the Budapest
ghetto. For a few weeks she had to part from me as the
only way of saving me from sure death by starvation or
disease. No great powers of imagination are required to
understand that in her state of mind, and under the inhuman
stresses she was facing daily, my mother was rarely up
to the tender smiles and undivided attention a developing
infant requires to imprint a sense of security and unconditional
love in his mind. My mother, in fact, told me that on
many days her despair was such that only the need to care
of me motivated her to get up from bed. I learned early
that I had to work for attention, to burden my mother
as little as possible and that my anxiety and pain were
best suppressed.
In healthy mother-infant interactions, the mother is able
to nourish without the infant’s having in any way
to work for what he receives. My mother was unable to
provide that unconditional nourishing for me--and, since
she was neither saintly nor perfect, quite likely she
would not have completely succeeded in doing so even without
the horrors that beset our family.
It was under the circumstances that I became my mother’s
protector--protecting her in the first instance against
awareness of my own pain. What began as the automatic
defensive coping of the infant soon hardened into a fixed
personality pattern that, fifty-two years later, still
caused me to hide even my slightest physical discomfort
in front of my mother.
I had not thought about the When the Body Says No project
in those terms. This was to be an intellectual quest,
to explore an interesting theory that would help explain
human health and illness. It was a path others had trod
before me, but there was always more to be discovered.
The counsellor’s challenge made me confront the
issue of emotional repression in my own life. My hidden
limp, I realized, was only one small example.
Thus, in writing this book I describe not only what I
have learned from other individuals or from professional
journals, but also what I have observed in myself.
The dynamics of repression operate in all of us. We are
all self-deniers and self-betrayers to one extent or another,
most often in ways we are no more aware of than I was
conscious of while “deciding” to disguise
my limp. When it comes to health or illness, it as only
a matter of degree and also a matter of the presence or
absence of other factors—such as heredity or environmental
hazards, for example—that also predispose to disease.
So in demonstrating that self-repression is a major cause
of stress and a significant contributor to illness, I
do not point fingers at others for “making themselves
sick.” My purpose in this book is to promote learning
and healing, not to add to the quotient of blame and shame,
both of which already exist in overabundance in our culture.
Perhaps I am overly sensitized to the issue of blame,
but then, most people are. Shame is the deepest of the
“negative emotions,” a feeling we will do
almost anything to avoid. Unfortunately, our abiding fear
of shame impairs our ability to see reality.
Each of us must reclaim the autonomy we lost when we parted
company with our ability to feel what was happening within.
That lost capacity for physical and emotional self-awareness
is at the root of much of the stress that chronically
debilitates health and prepares the ground for disease.
Despite the best efforts of many physicians, Mary died
in Vancouver Hospital eight years after her diagnosis,
succumbing to the complications of scleroderma. To the
end she retained her gentle smile, though her heart was
weak and her breathing laboured. Every once in a while
she would ask me to schedule long private visits, even
in hospital during her final days. She just wanted to
chat, about matters serious or trivial. "You are
the only one who ever listened to me," she once said.
I have wondered many times how Mary's life might have
turned out if someone had been there to hear, see and
understand her when she was a small child--abused, frightened,
feeling responsible for her little sisters. Perhaps had
someone been there consistently and dependably, she could
have learned to value herself, to express her feelings,
to assert her anger when people invaded her boundaries
physically or emotionally. Had that been her fate, would
she still be alive?
1:
M. Angell, “Disease As A Reflection Of The Psyche,”
, New England Journal of Medicine, June 13, 1985 (return
to article)
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