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A Most Clarifying Battle

The Spirit and Cancer

John Hunt Publishing Ltd.

Part I: Research into Illness, Suffering, and Spirituality

Chronic Illness, Suffering, and Society

In this book, I refer to cancer as a chronic disease. Most cancers are not chronic but, for those of us suffering with metastatic disease, the disease is chronic because there is no cure. Even in the few times when we are told that there is no evidence of disease, the physical toll of constant treatment, taken over years and not months, usually manifests in chronic side effects that impact function and quality of life.

There is an interior landscape of suffering that accompanies living with a chronic debilitating condition. It is unacknowledged but it affects relationships and undermines quality of life. Many of us are aware of it only to the extent that we may have a friend or family member who irritates us by not following through with social commitments or who always seems to be tired and not able to keep up.

Written accounts of living with a chronic illness all point to four overarching concerns which are discussed below:

Loss
Lack of reliability or consistency
Need for normalcy
Medical Team Fatigue

Loss in Chronic Illness

Some of the losses that come from living with a chronic illness include the loss of control over one's life and especially over one's own body, loss of educational or career opportunities, a loss of hopes and dreams as life will not turn out the way one had planned, and loss of self-respect as one moves from doing to just being. Frequently relationships are harmed and even broken. One patient said that he felt that he was "irrevocably and irretrievably damaged" (Gordon, 1997, p. 99).

The loss of control over one's life is particularly difficult. During the experience of chronic illness everything about life appears to be out of control. There are even limits to the power of your choices. Another patient wrote, "My choices were never final ... My physical state was never constant" (Goldstein, 2000, pp. 95–96).

Reliability in Chronic Illness

This experience of loss and powerlessness is never over. There is never a time when you are done with a chronic illness. The way that one feels changes quickly and demands changes in treatment plans and in social plans. Both of these are difficult but the long-term effect of being considered to be "unreliable" in social terms can be devastating.

Frequently people who have chronic illness do not look sick and friends have no other way of judging their physical state or any way of understanding why plans have to be canceled or changed. Many times the sufferer is actually thought to be taking advantage of others rather than actually needing time to take care of her/himself. Some friends get disgusted and drop by the wayside.

Another thing that tends not to be recognized is that people have a need to contribute to the greater society, a need for what is known as "generativity." Living with a chronic illness makes this need both critical to one's sense of identity and well-being as well as an unavoidable reminder of one's infirmity. Generative activities, such as work or volunteer projects, frequently involve a requirement for being active at certain times and places. However, the nature of chronic illness makes this complicated, and often unmanageable, and may make it not only more difficult for someone with a chronic illness to contribute but also reduce the availability of opportunities to do so.

Chronic illness also goes through cycles of remission and recurrence which can be devastating. Most people who live with a chronic illness will tell you that relapses are made much worse by the fact that they follow temporary remissions when "we think, with the eternal optimism of well-being, that we have escaped the clutch of pain for good" (Duff, 1993, p. 16).

Normalcy in Chronic Illness

The need for normalcy is a need experienced by all people living with chronic illness, partly because dependability is a critical component in human experience and, more importantly, because illness and health are social constructions. Society expects that illness comes only in periods of limited duration (you either get well or you die). Although the person who is ill is certainly given permission to take the time necessary to heal, this permission begins to be denied the longer a patient is ill, and in time society begins to develop a sense that the person really isn't sick at all but is malingering.

This can often lead to the ill person trying to be normal, even when feeling ill, lying when asked how he or she is doing by saying that she/he feels fine, and overestimating her or his strength or abilities. The person who is ill feels forced to create socially acceptable reasons for not living up to her or his potential.

If I had my way, I would tell anyone who inquired about my career ambitions that I remain in a less-than-satisfying job because of the security that it offers, and that I need the security to manage my life with bipolar disorder. I want an airtight excuse for what I perceive as my failure to make better use of my talents and education (Griesenbeck, 1997, p. 58).

Patients try to act normally in other ways by denying the reality of the illness or by erecting boundaries between the ill self and the normal self. Patients will offer differing accounts of how they are feeling depending on whether they are in a social or in a medical setting. Psychologically they may see themselves as two different people – the sick patient and the well individual – in an attempt to distance themselves from their illness.

People may be averse to using assistive devices, such as white canes or braces, because they call attention to their condition. This is one reason that cancer patients dread losing their hair during chemo; it marks them for all to see. Patients may also not want procedures that were once easily done in a clinic done instead by a home health nurse because it allows the illness to invade the sanctity of the home in a more tangible way (Goldstein, 2000).

Patients may want to hold on to items from their pre-illness life as talismans for the future. Melissa Goldstein (2000) writes about holding on to pairs of shoes that she would never be able to wear again because keeping them allowed her to hope that, one day, she would be able to dance. This speaks not only to coping but to the struggle to maintain one's identity.

Another aspect of the need for normalcy is the challenge to achieve a balance between dependency and independence. Friends and caregivers often do not understand how important it is for someone who is ill to be able to attend to little things. Caregivers may say with all good intention, "Here, let me. You shouldn't be doing that!" However, when they give too much it can, paradoxically, either increase the patient's felt need for independence and normalcy or may encourage the patient in a belief that he/she is incapable and therefore must be dependent in all things. Allan Macurdy, a person with muscular dystrophy, writes the following passage:

Some have argued, therefore, that I should eliminate all sources of risk and protect myself at all costs, but that could happen only if I were willing to live apart from other people in some kind of bubble. I would not be able to teach, represent clients, see friends, have an intimate life with my wife, play with my nephews and godchildren, or hug my dog. In other words, all those things that give my life value, purpose, and meaning would be sacrificed in order to protect me from infections that might kill me. Who would want to have such a barren, empty life (Macurdy, 1997, pp. 14–15)?

Medical Fatigue in Chronic Illness

Every narrative I have come across includes what I call medical fatigue. This is where physicians, having tired of not being able to cure the patient, opt not to continue treating them. The suffering that results from this has an urgent threatening quality far surpassing the forms of suffering enumerated above. This area is so important that it is addressed more fully in the section More on Medical Fatigue below.

There is a lot that caregivers can do to lessen their suffering and the suffering of those for whom they care, but these issues must be acknowledged and caregivers need to become better informed, not just on the physical aspects of disease, but on the psychological and spiritual aspects. If you are interested in learning more, the patient narratives that have been referenced in this article can be found in the books listed below.

Communal Aspects of Illness

A major part of any consideration of illness is its communal nature. As those involved in cancer research are aware, disease infects an entire family, not just the person diagnosed. Family and friends suffer with their loved one.

Sometimes illness makes people uncomfortable. You can see this when a parent or friend holds onto a belief that if the patient would only try hard enough he/she will be healed, or the belief that there isn't anything really wrong. Other times the people that the patient thought would be there through anything just disappear from her/his life. Often they are overwhelmed by the burdens of care giving and of managing the day-to-day tasks that fall on them.

Families and friends are forced to renegotiate relationships in the face of chronic illness (Hunt, 2000). It is hard and lonely to be in this situation and those living with illness may feel that it is unfair that they are the ones who will have to reach out and attempt to bridge that space, like they don't have enough to do just being sick. The disease of the family is often unacknowledged and untreated.

However, if we are brave and acknowledge these problems and attempt to resolve them, this very renegotiation of relationships can result in a deepening of ties that become more meaningful and satisfying. Unexpectedly, a number of accounts noted that this renegotiation resulted not only in the caregiver's increased duties to the patient, but in the patient assuming care giving responsibilities for the caregiver, a mutuality of love, respect, and care springing from the experience of illness.

My husband and I have experienced this firsthand. The fact of my cancer had frightened him into avoiding the subject altogether. After a long time of my being honest with him about my needs and my fears for him, and encouraging him to speak about his own feelings, our relationship is much deeper, sweeter, and more satisfying and I have confidence that we have been able to develop the support that we will need towards the end of my life.

Mark Nepo expresses this quite well in a more poetic account of his experience with cancer: We are well because people didn't watch our suffering, but entered us and then felt love-suffering of their own. At times, this hurt them too much, which, in turn, forced us to nurture them, until, in bare, essential ways on certain days, we weren't sure who was ill and who was well – a solution that saved us all (Nepo, 1997, p. 137).

The communal nature of illness is not limited, however, to family and friends. It also includes the entire society. Illness and illness behaviors have societal definitions and a framework of rules. Illness also may have roots in the choices and values of a society that led to the development and promotion of environmental factors and that shape approaches to healthcare. For example, in the United States, along with the development of industry, came a concept of the body as machine. This in turn shaped which forms of healthcare would be acceptable and which would not. The allopathic system of medicine in Western culture is based on the idea of systems and mechanisms, not on the interrelationship between the soul and the world as is medicine in some other cultures.

This approach, for the most part, has also limited the focus of healthcare to considerations of the individual mechanism (the body of the patient) and not the ecology within which the mechanism (body) is placed. Thus, our approach to illness avoids considering the link between ozone depletion and melanoma, or other controllable environmental factors, and focuses on illness as a personal problem. The inability or disinterest of the society to reform the manner in which care is given and paid for reconfirms that illness in Western society is considered a personal problem (Kleinman, 1988).

Kat Duff believes that illness may be a cosmic form of societal scapegoating (Duff, 1993). She refers to the theory that society is out of balance (increasingly focused on material possessions and less in tune with natural phenomena); thus, balance must be achieved in a way that will humble society and allow it to take its rightful place in the universe.

"Such traditions," wrote Joseph Epes Brown, "affirm for those who listen, or indeed inevitably for those who do not, that where the sacred in the world and life is held as irrelevant illusion, where evasion of sacrifice in pursuit of some seeming 'good life' becomes a goal into itself, then ... the ordering cycle of sacrifice will and must be accomplished by nature herself so that again there may be renewal in the world." As I understand it, the "ordering cycle" of nature most often manifests as natural disasters and disease epidemics, for "she" sleeps and stirs in the bowels of the earth, and our bodies. We have but one choice: to sacrifice or be sacrificed (Duff, 1993, p. 136).

Thus, according to Duff, those who become ill are functioning as scapegoats of society, the vehicles through which balance is being restored for all. She also refers to the phenomenon that many of those who have been ill frequently state their belief that their illness served some higher purpose, or that individuals may return from a period of illness with a passion to "set things right" as further evidence of this scapegoating function (Duff, 1993, pp. 114–115).

Illness as an Agent of Spiritual Transformation

Kat Duff, in her book The Alchemy of Illness, reminds us that "one of the central tenets of alchemical philosophy was that physical decay is the beginning of the 'Great Work'; spiritual transformation" (Duff, 1993, p. 79). [Italics mine for emphasis.] In 2007, while researching a study I was doing on the nature of spirituality in the chronically ill, I came across a number of patient narratives that described ways in which such individuals felt that they had been transformed through the process of living with their disease, and these transformations had a particularly spiritual feel to them. My own findings, which will follow below, support this.

Kat Duff, writing about her own illness experience, writes:

The alchemists insisted that two things must happen before the cure can be extracted from the disease. The problem must be kept in a closed container, and it must be reduced to its original state through a process of breakdown. The limitations and immobility of illness provide the closed container that enables this transformation, precisely because there is no way out (1993, p. 81).

Later in her text, she looks from alchemical philosophy to finding insight on the transformative power of illness in the form of initiation rituals:

When I woke from that dream I realized that my illness had come to serve the function of initiation, it was bequeathing me a mantle of power ... These rites (initiation rites within traditional cultures) are not events so much as processes, transformations triggered by contact with the sacred, they are intended to prepare the individual for the powers, privileges, and responsibilities of the phase of life they are entering, by actually cultivating the strengths and awareness that will be needed (Duff, 1993, pp. 92–93).

In her account, Duff describes her encounter with sacred power with that which is so beyond human comprehension that it can only be approximated through the stories found in holy myth.

Mark Nepo, in his account of his bout with cancer, describes his spiritual experience:

Yet we have also been touched by a relentless, mysterious grace that has surfaced briefly to restore us. Repeatedly, it rises to save us or empower us – we can no longer make the distinction – and we find ourselves tied to a fathomless place where neither of us had dared to voyage. We call that reservoir God, although you may call it something else (Nepo, 1997, p. 134).

Melissa Goldstein expresses her encounter with the transcendent during her adjustment to life with lupus:

The Light is the physical embodiment of all that I had sensed, and a great deal more, which I had vaguely intuited. The Light is my faith. I call upon it when the emotional or physical pain of my disease becomes unbearable. And it is through the image of my eagle that I join with the Light to find comfort ... I looked to the sky with all that was in me. "Please be with me in my illness. Do not leave me alone in this terrible place." Then the ambient Light descended, washing in waves over me, and through me. I heard whispers, words of solace and healing. They were in a language beyond my conscious translation, but the sense of peace they brought me was total and complete. As the Light poured into me, filling me, I no longer spoke in words. For I was in the Light, part of the Light. I was Light. I did not need words to be heard (Goldstein, 2000, pp. 29–30).

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Excerpted from A Most Clarifying Battle by Landis M. F. Vance. Copyright © 2016 Landis M.F. Vance. Excerpted by permission of John Hunt Publishing Ltd..
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