...The Nature of Suffering, Continued
A person has a cultural background. It is well known that socially determined
factors, such as diet, environment, and social behaviors, contribute to
disease patterns. Because culture also contributes to beliefs and values,
cultural factors play a part in the effects of disease on a person. Culture
defines what is meant by masculine or feminine, what clothes are worn, attitudes
toward the dying and the sick, mating behavior, the height of chairs and
steps, attitudes toward odors and excreta, where typewriters sit and who
uses them, bus stops and bedclothes, how the aged and the disabled are treated.
These can be a source of untold suffering. They influence the behavior of
others toward the sick person and that of the sick toward themselves. Cultural
norms and social rules regulate whether someone can be among others or will
be isolated, whether the sick will be considered foul or acceptable, and
whether they are to be pitied or censured. Returning to the sculptor
described earlier, we know why that young woman suffered. She was housebound
and bedbound, her face was changed by steroids, and she was masculinized
by her treatment, one breast was twisted and scarred, and she had almost
no hair. The degree of importance attached to these losses-- that aspect
of their personal meaning-- is determined to a great degree by cultural
priorities.
With this in mind, we can see how someone devoid of physical pain, perhaps
even devoid of "symptoms," can suffer. People can suffer from
what they have lost of themselves in relation to the world of objects, events,
and relationships. Such suffering occurs because our intactness as persons,
our coherence and integrity, come not only from intactness of the body but
from the wholeness of the web of relationships with self and others. We
realize, too, that although medical care can reduce the impact of sickness,
inattentive care can increase its disruption.
A person has roles. I am a father, a physician, a teacher, a husband,
a brother, an orphaned son, an uncle, and a friend. People are their roles
(whatever else they may be), and each role has rules. Together the rules
that guide the performance of roles make up a complex set of entitlements
and limitations of responsibility and privilege. By middle age the roles
may be so firmly set that disease can lead to the virtual destruction of
a person by making the performance of his or her roles impossible. Whether
it is a doctor who cannot doctor, or a parent who cannot parent, the individual
is unquestionably diminished by the loss of function. I am aware that the
"sick role" allows patients to be excused from their usual role
requirements but, in practice, the concept of the sick role has not been
very useful (although it offers some insight into illness behavior). Here,
as in each facet of person, the degree of suffering caused by the loss varies
from person to person.
There is no self without others, there is no consciousness without a
consciousness of others, no speaker without a hearer, no dreamer who does
not dream in relation to others, no act or object or thought that does not
somehow encompass others. There is no behavior that is not, was not, or
will not be involved with others, even if only in memory or reverie. The
degree to which human interactions are literally physically synchronized
is amazing. Take away others, remove sight or hearing, let the ability to
synchronize activities be injured, and the person begins to be diminished.
Everyone dreads becoming blind or deaf, but these are only the most obvious
injuries to human interaction. There is almost no limit to the ways in which
humans can be cut off from others and then suffer the loss.
It is in relationships with others that sexuality, giving and receiving
love, and expressing happiness, gratitude, anger, and the full range of
human emotionality find expression. Therefore, in this dimension of the
person illness may injure the ability to express emotion. Furthermore, the
extent and nature of a sick person's relationships strongly influence the
degree of suffering that a disease may produce. There is a vast difference
between going home to an empty apartment or returning to a network of friends
and family after hospitalization. Illness may occur in one partner of a
long and strongly bound marriage, or it may be the last straw in a union
that was falling apart. Suffering caused by the loss of sexual function
associated with some diseases depends not only on the importance of sexual
performance to the sick person but its importance in his or her relationships.
The impact of the relationships a patient has was brought home to me as
I sat at the bedside of a dying man who wanted to stop the futile treatments
being given for his malignancy. His wife sat stunned after hearing him speak
and then screamed, "Damn you, you're just trying to get out and
leave me like you always have."
A person has a relationship with himself or herself. Self-esteem, self-
approval, self-love (and their opposites) are emotional expressions of the
relationship of a self to itself. To behave well in the face of pain or
sickness brings gratification, just as to behave poorly in these situations
may leave lifelong disappointment in its wake. The old-fashioned words honor
and cowardice stand for states that are much more with us than their lack
of currency would suggest. In our times we have been more concerned with
relationships with others than with ourselves. Nonetheless, suffering may
follow on failing oneself, if the failure is profound enough.
A person is a political being. A person is, in the larger sense of political,
equal to other individuals, with rights, obligations, and the ability to
redress injury by others and by the state. Sickness can interfere here,
producing the feeling of political powerlessness and lack of representation.
The recent drive to restore the disabled to parity is notable in this regard.
All relationships between people, in addition to whatever else they may
be, are relationships of power; of subordinance, dominance, or equipotence.
The powerlessness of the sick person's body and the ability of others to
control the person by controlling the body are part of the political dimension
of illness. The change in the relationship of doctor and patient previously
described represents a change in their relative power. However, the fundamental
political loss and source of suffering in this dimension of person derives
less from the actions of others as from disease itself. In the Book of Job,
Job in the extreme of his suffering, which he feels is undeserved, wants
to plead his case directly with God. But his bodily affliction and fear
have undermined his being-- "There is no umpire between us, who might
lay his hand upon us both. Let him take his rod away from me, and let not
dread of him terrify me. Then I would speak without fear of him, for I am
not so in myself" (9:33-35). The actions of others can increase the
fears of the sick.
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