Reaching to the

Reaching to the
depths of the soul:
Understanding
and exploring
meaning in illness
THE 1997 HELENE HUDSON MEMORIAL
throughout the illness trajectory and can have a profound influence
on the person’s lived experience. The skills required to understand
meaning and the lived experience of illness for the individual are
extensive. It is only through true presence, mutual understanding
and a sharing of the life of the other that nurses are able to
understand and co-construct meaning. It is a respect and
understanding of the individual within the whole context of their
personhood and the meanings assigned to their experience of
cancer which allows the nurse to practice beyond the surface, to
touch the person’s soul.
Introduction
Excerpts of this paper were used to present
the 1997 Helene Hudson Memorial Lecture.
Sponsored by Amgen Canada, Inc. at
Toronto, Canada, November 1997.
Abstract
By Doris Howell
The nurse who hopes to respond to the experience of individuals
and their families with a diagnosis of cancer must understand and
explore meaning in illness. Meaning has been described as a
fundamental dimension of personhood (Cassel, 1982). There can be
little understanding of the person’s behaviour and responses to
cancer without understanding the meaning of illness in their lives.
The meaning ascribed to a situation can have a profound impact on
the individual and family’s coping and adjustment and may
influence their relationships with the health care team. Meaning in
illness may be influenced by cultural beliefs, religion, values, life
philosophy and past experience. Meaning goes beyond the surface
reactions of the individual to the very depths of the person’s soul
and can be a source of despair and suffering. Meanings evolve
Doris Howell
CONJ: 8/1/98
Helene Hudson
1945-1993
Having cancer changes everything, including your perceptions
of your world and life (Eick-Swigart, 1995). As described in this
statement, a diagnosis of cancer is a life-changing experience that
can threaten personal identity, belief systems, roles and
relationships and one’s sense of the future. Cancer removes
individuals from their social roles and activities influencing one’s
sense of self (Lupton, 1994). The limitations in functional roles
are particularly relevant to life’s meaning, because loss of such
roles can diminish a person’s perceived purpose in the world
(Cassel, 1982). As Koestenbaum (1976) states, “being useful to
others rather than a hindrance is one of the most meaningful
aspects of life”.
The meaning of a cancer diagnosis and the devastating impact of
the illness on people’s lives are captured in the following patient
statements: “It was like having the world blown out from underneath
me”; “My world dropped out. You know “cancer”, it’s a death word—
the worst thing you can hear” (Furman, 1993). As a result of cancer,
individuals may need to redefine relationships, question the direction
of their lives and confront their own mortality for the first time. As
Colyer (1996) states, “an awareness of death wreaks havoc with
human integrity”. This initial diagnostic period has been described as
a time of “existential plight”, when existential concerns having to do
with meaning of life, illness and thoughts and fears of death
predominate (Weisman, Worden, 1976).
Meaning of cancer
The meaning of cancer can have a profound effect on the
person’s emotional responses and may influence the way they
will respond to the “existential plight” of cancer. Meaning has
been described as a fundamental dimension of personhood
(Cassel, 1982) and there can be little understanding of the
person’s responses to cancer without understanding the meaning
of illness in their lives. Individuals may have two reasons for
their symptom or illness experience, the medical reason and their
own private version. For instance, cancer might be perceived as
punishment (Barkwell, 1991; Luker, Beaver, Leinster, Owens,
1996) or cancer pain might be perceived as God’s will
(Kumasaki, 1966). Ferrel and Dean (1995) found that existential
or spiritual meanings were assigned to pain and for many
patients cancer pain was a test for purification, a sign that the
illness was progressing and signified impending death.
Meaning in illness may be influenced by cultural beliefs,
religion, values, life philosophy and past experiences. A person’s
cultural background provides a model for understanding and
responding to experiences. Culture may provide the person with an
organized response to changes in bodily appearance, bodily
function, mental status or behaviour, functions of body parts, or in
Doris Howell, RN, MScN, is a cancer care consultant based in Lisle, Ontario.
doi:10.5737/1181912x811216
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bodily emissions (Donnely, 1995). Religious beliefs may influence
the meaning of an experience, changing the person’s perception of
the meaning of an event. Meanings may vary for both the individual
and for the clinician trying to make sense out of the illness. The
meanings assigned to an illness are unique to the individual and
these subjective illness meanings may be difficult to assess.
Kleinman (1988) introduced an explanatory model as a way of
understanding the meaning attached to an illness experience. The
explanatory model includes a lay view of the etiology, onset,
pathophysiology and desired or expected treatment. Liposki (1970)
defines meaning as the subjective significance of all disease-related
information that impinges upon the patient. He conceptualized
several categories of meanings assigned to illness, namely;
challenge, enemy, punishment, weakness, relief, strategy,
irreparable loss and value.
The most popular meanings assigned by women with breast
cancer to their illness were challenge and value (Luker, Beaver,
Leinster, Owens, 1996). These women went through a process of
reevaluating their lives in an attempt to determine what
contributed to continuing meaning in their lives and served as a
means of helping them to reestablish priorities. The illness was
perceived as contributing to the women’s renewed growth. As a
meaning, when value is attached to an illness the following
changed perception of the disease is possible:
“I have this sense of being alive and embracing life. The spirit is
the energy that drives the whole vehicle, it is the lust for life,
wanting to get there, that’s the energy, that’s the spirit, that drives
me, the zest of energy...I can live life to the fullest, even if I have
no physical ability. I can still live life to the fullest because where
I am living is from within”
Women who perceived their illness as an enemy experienced more
difficulty getting on with living, stating, “it’s like being on death row
waiting for your turn to die”.
An individual’s personal meanings and the context in which
the person lives affect the meaning that a serious illness will have
in their lives. Illness is always an interruption and the meaning or
significance of that interruption will depend on where that person
is in their own life journey (Benner, 1989). The following story
demonstrates the meaning derived from a cancer diagnosis for a
young, athletic man:
This young man with bone cancer, who raged throughout the early
days of his diagnosis and treatment, drew a picture depicting the
meaning of cancer in his life. He drew a crude sketch of a vase
with a crack running through it. Eventually this young man
redefined his purpose in life and began a kind of ministry of
helping other patients. As a result of this new-found meaning he
asked to complete his earlier drawing. He drew yellow lines
radiating from the crack to the very edges of the paper. and
pointing to the yellow coming out of the crack stated, “This is
where the light comes through” (Remen, 1996).
In contrast, a veteran railroad worker regarded his cancer solely
as an annoyance, as something not to be thought about but
eliminated (Ryder, 1993). In an effort to adapt to these
interruptions and changes, individuals reformulate their way of
being in the world (Carter, 1990) and attempt to develop a sense of
the meaning of the illness (Steeves, 1992; Barkwell,1991).
Searching for meaning
Persons with cancer search for ways of explaining their
sickness experiences in an attempt to make sense out of the
chaos. By giving meaning to their experiences, individuals
define and give purpose to their cancer experience and their lives
CONJ: 8/1/98
(O’Connor, Wicker, Germino, 1990). Frankl (1959) identified the
search for meaning as the primary force in life and believed that
each person’s meaning is unique and specific and must be
fulfilled by him alone. Only then does it achieve a significance
that satisfies his own “will to meaning”.
The person searching for meaning may enter an initial search
attempting to find an answer to their symptoms, the meaning of
tests and finally the meaning of life in light of the illness
(Barnard, 1995). It has been proposed (Thompson, 1991) that
the search for meaning could involve looking for: causal
attributions (Why do events happen?), selective incidence
attributions(Why did this happen to me as opposed to someone
else?), and responsibility attributes (questions of personal
responsibility for the event) . Unfortunately, self-blame may be
one of the potential outcomes of searching for meaning in
cancer.
Meanings might also evolve out of seeking an understanding
of the personal significance of the cancer diagnosis (O’Connor,
Wicker, Germino, 1990). Finding meaning in an illness
experience may require a change in values and priorities in life.
Many individuals are able to rework and redefine meaning in
their lives by embarking on a process of restructuring values
and their attitudes towards self, life and others. Women
experiencing uncertainty from breast cancer embarked on an
exploration to find meaning in their lives to help them live with
multiple possible outcomes in their uncertainty (Nelson, 1996).
These women struggled with what their lives had meant and
what their futures might hold and had to learn a new way of
being in the world. New meanings surfaced for these women
through helping others.
The human spirit searches for goals that have personal
meaning and enhance life (Frankl, 1959). Meaning can be found
in three categories: creative (accomplishments), experiential
(witnessing a sunset) and attitudinal (adopting a positive
attitude toward a fate that cannot be changed). Frankl (1959)
states, “when called upon to deal with life’s challenges, the
spirit’s defiant power is activated in tenacious determination; it
responds with irresistible stirrings including the urge to live, to
be free, to understand, to enjoy, to create, to connect and to
transcend”. Those who are able to attribute meaning to their
cancer experience can be led to a creative, self-actualizing
experience (Granstrom, 1985).
Finding meaning in suffering
Illness has been described as both a soul and body experience
and it is within the soul where meanings may surface. “Meaning
is one of the most powerful of all intrinsic rewards and it sings
to the soul” (Frankl, 1959). Secretan (1997) states, “a person’s
mind and emotions are windows to the soul and the soul is the
spirit, inner self or the essence of the person, which is tied to a
greater sense of self-awareness, a higher degree of
consciousness, an inner strength and a power than can expand
human capacities and allow a person to transcend his or her
usual self”. The soul has been described as our essence and the
immortal or spiritual part of us that transcends our temporary
existence (Secretan, 1997). Psyche is the Greek word for soul.
Hippocrates believed that the person’s mind and soul should be
inspired before illness could be treated.
Suffering may be a possible outcome of not being able to find
meaning in an illness experience or patients may find a way
through suffering by finding new sources of meaning. Illness has
been described as a manifestation of soul suffering but what is
meaningless suffering can be transformed into soul making
(Woodman, 1990). Our minds are limited to dealing in
possibilities, but our souls are capable of reaching beyond the
traditional, to the magical and the richly elaborated dream.
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(Secretan, 1997). Only to the extent that a person has fulfilled the
concrete meaning of human existence will the self be fulfilled
(Watson, 1988).
Meaning can be derived through a spiritual connection or
through beliefs about God ( Shuster, Steeves, Richardson, 1996).
The ability to find meaning in suffering has been identified by
hospice patients who describe experiences of the whole person that
brought them in touch with something greater than or outside
themselves (Steeves, Kahn, 1987). As Nietzsche states, “He who
has a why to live, can bear almost any how”. Hospice patients were
found to impart meaning or purpose to their situation in order to
create a sense of control over their environment (Lewis, Haberman,
Walligan, 1987). The following nurse’s description poignantly
captures the meaning that can be found, even in dying, that allows
the person to regain control and transcend the experience:
Mr. Baker was dying. Medicine had nothing left to offer. She
entered into his room with a sense of despair, wondering what
she could offer in what seemed to be a hopeless situation. Mr.
Baker taught her that life continues even for the dying. He still
liked his coffee hot, he loved to be positioned so that he could
see the sunrise and the sunset. He relished his visits with his
wife. A rather elaborate management strategy helped him cope
with his colostomy. He wore brilliant green socks, and he made
jokes about leprechauns and the touch of the Irish (Benner,
1989).
Significance of meaning in illness
Victor Frankl (1986) states, “to live is to suffer, to survive is
to find meaning in the suffering”. The search for meaning is a
significant part of the cancer experience and may affect survival,
coping and adaptation. Meaning is primarily a cognitive
phenomenon that arises in response to specific situations and
events, and it is a central factor in the process of social
adjustment to everyday existence (Mead, 1934). It is meaning
that enables an individual to regain an “inner hold on life”
(Frankl, 1986). An important aspect of the coping process is the
struggle to maintain a sense of meaning that allows the
individual to regain a sense of their self and to maintain a sense
of wholeness and personal integrity (Fife, 1995). The meaning
that an individual develops concerning their illness may have an
impact on their psychological well-being (Lewis, 1989) and may
be a significant factor in achieving a positive adaptive response
and an ability to cope with their illness experience (Steeves,
1992; Fife, 1994).
It has been postulated that there may be a biology of meaning
that effects the healing process (Barasch, 1993). Meaning may be
able to influence the biochemical processes of the body (Block,
1997). The ability to reframe illness in a different light through the
reconstruction of meaning may have an influence on survival.
Speigel (1989) found that women who received a support group
intervention were able to extract meaning from the tragedy by using
their experience to help others. Lack of meaning was found to be a
predictor of depression (Thompson, Sobolew-Shubin, Graham,
Janigan, 1989 ), anxiety and a lowered self-esteem (Lewis, 1989).
The search for and discovery of meaning was an important aspect of
recovery from breast cancer. The meaning ascribed to the cancer
diagnosis and treatment seems more destructive than the cancer
itself. Recovery from the psychological effects of cancer can
continue long after cure has been pronounced (Northouse, 1981).
Responding to meaning in illness
How people experience meaning in their lives is not readily
understood or recognized by health care professionals. To
achieve understanding, it is necessary to explore the meaning
that persons attach to situations. A person’s illness experience
CONJ: 8/1/98
may not be related to the external world as much as to the
person’s inner world as he or she experiences it. As Cassel
(1982) states, “illness and suffering cannot be understood
without taking personal meaning into account”. Travelbee (1977)
notes that the professional nurse hoping to deal with human
responses in the fullest sense of the word “human” must be
prepared to assist individuals and families not just in coping with
illness and suffering, but in finding meaning in these
experiences.
Responsiveness within the context of the nurse-patient
relationship means a willingness to accept a patient’s invitation
to be a close traveling companion on an uncertain journey.
Experiences of intense pain, abandonment, and fear of living and
dying are shared in an effort to construct the meaning of
seemingly meaningless experiences (Parker, 1990). The
cocunstruction of meaning is a dynamic process that necessitates
engaged listening and exploration, understanding and true
presence, with the nurse acting as catalyst to facilitate the
discovery of meaning and having the courage to bear witness.
Exploration of meaning
Nurses have a unique opportunity to bring compassion and
support to people who develop cancer, the kind of support that
touches and transforms human life far beyond the level of curing
illness. Responding to the illness experience of the person
defines a crucial domain for nurses (Dougherty, Tripp-Reimer,
1990). This means being involved in the life, not just the disease
of the patient. As nurses we must move beyond the use of
conceptual models that divide a person into parts to be fixed and
treated (Bennett,1993). Being able to see the meaning of dying,
to nurse the whole patient we must have knowledge of the whole
spectrum of the patient’s experience. It is the nurse’s duty and
responsibility to help patients in their search for meaning
(Starck,1992).
The personal meaning of an illness may be largely invisible.
The nurse can create an environment in which reflection on and
redefinition of meaning in life by the patient is supported.
Nurses can help the patient to determine the personal meaning
of cancer in patient’s lives through exploring with the
individual, “What does this illness mean to your life”?, “What
has changed”? Cassel (1982) concluded that the only way to
know if suffering is present is to ask the sufferer. Using
questions such as: “Can you tell me what it is like?” “Can you
help me to understand what it is like to be in your place?” In
exploring with the patient their illness experience nurses can
arrive at understanding and shared meaning, giving voice to the
language of suffering. Transformational care involves listening
to the person’s description of their illness to discover the
meaning the illness holds for the individual. The meaning of
survival or the meaning of dying can be known only to the
person, and nurses - through gentle presence and listening - will
be able to hear meaning. As Hallsdorsdottir and Hamrin (1996)
state, “the nurse must at times assist the person to find the words
to express their experience, make conscious what is
unconscious, make visible what is invisible, make tangible what
is intangible”. Nurses should be able to hear about suffering and
loss of meaning. As Kubler-Ross (1977) states, “if you do not
use your head and your heart and your soul, you are not going to
help a single human being” (p. 13).
Understanding meaning
Moore (1991) states, “There is a quality to our
understanding that promotes healing of body and mind and
moments of deep understanding can transform suffering”. The
following excerpt provides insight into a moment of deep
understanding:
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“I said, “ I’m beginning to understand how hard it is to be you”.
Her eyes welled up and she nodded slowly. Seeing how much it
meant to her to have someone grasp even momentarily the
private hell she had to endure, I found my own eyes welling up
too and I felt a chill in my neck and spine. For a moment, it felt
like we were joined, both parts of some larger whole; it was very
peaceful and reassuring, even loving” (Mathews, Suchman,
Branch, 1993).
To feel understood is to experience the fact that one’s
personal meaning is shared by another person. The very nature
of nursing practice necessitates hearing and understanding the
language of other. Shared understanding may not be possible
through verbal communication only. “When I insist that my
clients provide increasingly verbal definitions to describe
feelings, I may not be dancing well with them” (Moore, 1991).
A more important dance may be occurring outside our
awareness, which contains the stuff of healing. Patients may not
be able to provide the language and much of the way they
communicate meaning may be through story, symbolic language
and metaphors.
Through story, human beings communicate their dreams, hopes
and sufferings (Collins, 1996), allowing us to enter their world, to
see the illness through their eyes, to understand how they perceive,
understand and feel the illness experience (Kleinman, 1988).
Entering the patient world and seeing the world from their
perspective is described in the following excerpt from the author’s
clinical practice:
Ellen was a young woman who had a promising career in a
public domain and was enjoying life to the fullest when a
squamous cell cancer of the palate of her mouth required
extensive surgical removal, involving enucleation of the eye.
The only patch that could be made to hide what she perceived as
the “nightmare” left by the surgery involved the use of a patch
that covered most of one side of her face with a fake eye painted
on it. When she came to see me for counselling her head was
bowed, her humiliation would not allow her to face me. She had
been trying to get through and reinvest in life with little success
and was now unable to leave her house, not even to the mailbox.
In exploring what life was like for her right now she described
how “she felt like a monster” and some teenagers at the mall
had verified her beliefs. The real unconscious source of her
distress was found to be that when she was a little girl she was
taught that you were not a good person unless you always had a
dress on and shoes shined and face made up when you left the
house. Ellen’s entire personhood was in jeopardy and she felt
worthless. Her entire meaning in life had been destroyed.
One powerful way that meaning can be communicated is
through metaphors (Czechmeister, 1994). Metaphor is one way
that people think about and interpret their world. Metaphors can
provide a window into the person’s reality or lived experience.
Metaphors do not add facts to a description but they add depth of
meaning. Metaphors are often used to communicate the meaning
of a situation, and by asking the patient to tell you about the
metaphor, significant insight into meaning of illness is
uncovered. The importance of metaphor is captured in the
following story:
A young child was deeply disturbed upon hearing her diagnosis of
leukemia and was desperate to make paper cranes. It was
discovered that a few days prior to her diagnosis her class at
school had been told a story about a young Japanese girl with
leukemia who would die if she could not make 1000 paper cranes
within a certain time frame.
CONJ: 8/1/98
The cultural meaning of cancer can often be communicated
through the use of symbolic language. Symbolic language is
particularly important in caring for children as it may be their
only means of communicating difficult-to-verbalize feelings and
the meaning attached to illness. Kubler-Ross (1983) shared the
story of a child in an oxygen tent who asked how he would get
out if a fire broke out. The first nurse explained that this would
never happen, then told the story to another nurse who
understood symbolic language. The second nurse went into the
room, asked the child to repeat the question and, instead of
explaining, took the child in her arms and said “Would this
help?” The child began to share his feelings about dying.
As nurses we must learn to acknowledge the patient’s need for
meaning in their illness and learn their symbol system and the
person’s unique way of communicating their experience. We
must also learn the way in which they assign meaning to life
events, exploring with them new ways of finding meaning in
their experiences.
Knowing the person
Knowing has been described as one of the five dimensions of
caring and has been defined as striving to understand the
meaning an event has in the life of another (Swanson, 1991).
Meaning occurs through entering into the world of the person,
understanding that world and responding to needs. Knowing the
suffering of others requires an exhaustive understanding of what
makes persons the individuals that they are and a comprehension
of when the suffering person feels whole, threatened and
disintegrated (Cassel, 1982). Gadow (1985) states, “knowing the
patient limits their vulnerability and preserves their integrity and
dignity”.
In coming to know the patient, nurses cannot rely upon
theoretical formulations but must instead be willing and open to
allowing the person to be themselves and to hearing about who
they are. The whole-person (personhood) concept includes
personality and character, the person’s past and life experiences,
family identity and cultural background, roles, relations with
other, political aspects of our being, the body, our secret life,
perceived future and a transcendent or spiritual dimension
(Starck, 1992). In knowing the patient, the nurse is able to
provide compassionate care that is relevant to the life of the
other. Compassion is a sensitivity to the pain and brokenness of
the other, a quality of presence which allows one to share with
and make room for the other (Roach, 1987).
True presence
True presence is an experience of genuinely engaging with
another, perhaps for only a fleeting moment, perhaps
intermittently for an extended time (Liehr, 1995). In moments
of genuine meeting and mutuality, we make the other present as
a whole and unique being, as the person that he is, a presence
by which we are told that there is meaning (Buber, 1965).
Human touch and human presence in some way directly or
indirectly restore the dignity and affirmation of being.
Caregivers participate in the act of being fully present with the
patient, within the context defined by that individual patient.
Shared understanding emerges through connection with another
human being. If the inner world of the individual (the soul) is
to thrive, it requires connectedness, communication and love
during times of life threatening illness (Murphy,1996). Mutual
caring has been identified as the most satisfying of human
experiences as well as a source of meaning in life
(Koestenbaum, 1976). One woman described this connection in
the following way: “she would look right into my eyes which is
like looking into my soul. So she looked into my soul to see
what I needed” (Watson, 1988).
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Another human being’s presence is a therapeutic activity of its
own characterized by sensitivity and understanding of the
patient’s plight. Leo Buscaglia was asked to judge a contest. The
purpose of the contest was to find the most caring child and the
winner was a four-year-old child whose neighbor had recently
lost his wife. Upon seeing the man cry, the little boy went into the
old gentleman’s yard, climbed onto his lap and just sat there.
When his mother asked what he had said to the neighbor, the little
boy said, “Nothing I just helped him cry” (Canfield, Hansen,
Hansen, 1996, p.28). This boy demonstrated that presence and
relationship are not about doing, they can be silent and they are
more about just being and presence than anything else.
Catalyst to meaning
Meaning is unique to each individual and must be discovered. It
cannot be given to another person (Frankl, 1959). Each patient
encounter is an opportunity for the nurse and the patient to join in a
search for meaning and understanding that is relevant to the patient.
The nurse can be a catalyst facilitating the patient’s ability to extract
meaning from the experience of illness and death (Jones, 1993). In
order to act as a catalyst, nurses need to move from merely
understanding meaning to illuminating peoples’ capacity to
transform meaning and experience (Hartrick, 1997). Starck (1992)
recommends a three-step process to facilitate the discovery of
meaning and purpose: assessing the meaning of life in the
suffering experience; validating the strength of the human spirit;
and freeing the human spirit. Assessment means eliciting
information about the suffering experience and the meaning it
holds for the patient. Assisting the patient to get in touch with the
human spirit can mobilize the forces of healing, allowing the
person to choose a new attitude. Frankl (1959) states, “the last of
the human freedoms is to choose one’s own attitude”.
Story telling, use of fables or metaphors, and use of parables help
persons to find meaning in their experiences, possibly helping to free
the spirit (Starck, 1992). The following story demonstrates how a
nurse can help to free the human spirit:
Bernadette was a patient I cared for whose suffering was endless
and she could not find any reason to live and constantly spoke of
her desire to die. Much of the meaning of her suffering was
hidden so I decided to use a poem from a book entitled, “The Fall
of Freddie the Leaf” to reach her and possibly free her in her
struggle. I used this parable because Bernadette described her
favourite season as the fall. She would vividly describe how she
felt in looking at the changing colours of the leaves. Fall
signified for her that new growth would begin. Many days prior
to sharing the parable with her I filled a green garbage bag full
of fall leaves and dumped them all over her. It was the first time
I had seen her smile in months. The parable is about a leaf who
does not want to let go of the branch because falling would be
like dying. Others provide him support and describe how he will
be part of the new forming leaf, and finally at the end of the story
he decides to let go.
Courage to bear witness
There comes a time in illness that goes beyond meaning, when
the search for and seeking of meaning is no longer relevant.
Instead, the caregiver offers a quiet sharing of the experience and
helps the person to sustain the burden of suffering (Donnely,
1995). At this stage of illness the caregiver is needed to witness
the patient’s fears, pain, sorrow and dying. Being witness has a
peculiar property of being separated from the action, yet at the
same time fully engaged. There is sympathy and empathy,
resentment and compassion...often the patient’s pain or distress
is indirectly felt, transformed, vividly imagined, or distorted by
thinking it is much worse than it really is. Witnesses are afraid
CONJ: 8/1/98
for the patient and themselves (Horowitz, Lanes, 1992). The
following excerpt of a poem written by a student nurse
(Ferguson, 1989, p. 131) poignantly captures the fear of being
witness to the experience of dying:
The Transfiguration
I was afraid at first
To look at her
Because three days ago
When I looked she was not dying
Three days ago we talked
As she washed her flesh
Protuberant and sagging at the sink
Struggled to wash the suffering from her mind
No use
For it had worked its way
Into the pores of her skin
And into the whites of her eyes
Remembering this I was afraid.
Part of being witness is being able to accept the truth that we
are vulnerable in our humanity and having the courage to share our
whole person with another in order to help them in finding
meaning in the face of death. It requires significant courage to
enter into the unknown of someone’s reality, to be open in
compassionate ways and to live with the uncertainty of the
outcome (Longhurst, 1987; Gadow, 1989). As Frank (1997) states,
“having the courage to bear witness means being able to abdicate
the power to cure for the power to witness”.
Summary
In summary, meaning is a powerful and significant part of the
experience of living with cancer. Meaning may be a significant factor in
understanding the patient’s lived experience of illness and their ability to
adapt and respond to the chaos wrought by a cancer diagnosis. Nurses
play an important role in helping patients in their struggle to find meaning
in their circumstances as they attempt to restructure and find new
meaning in their lives throughout the illness trajectory. The search for
meaning can be a lonely and isolating experience without the presence of
another caring and compassionate human being who is willing to become
part of the journey. The nurse’s presence can be a significant factor in
establishing meaning and can be a powerful source of healing. At the
beginning of this presentation I described how cancer changes
everything. In closing, I would like to share with you a poem (Canfield,
Hansen, Aubrey, Mitchell, 1996) about what cancer cannot do.
What Cancer Cannot Do
Cancer is so limited -
It
It
It
It
It
It
It
It
It
It
16
cannot
cannot
cannot
cannot
cannot
cannot
cannot
cannot
cannot
cannot
cripple love
shatter hope
corrode faith
destroy peace
kill friendship
suppress memories
silence courage
invade the soul
steal eternal life
conquer the spirit.
Source Unknown
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