biological research and in clinical research to unravel the causes of cancer and to develop better ways to fight it. Despite this effort, the prognosis of the most.
RUDY P. C. RIJKE
CANCER AND THE DEVELOPMENT
OF WILL
ABSTRACT. People with cancer, who live better or longer than expected or who recover completely despite a poor medical prognosis, usually go through a profound change and self-development. This paper is an attempt to describe and understand the nature of this transformation by examining how initially unexamined conceptions of oneself, life, illness, etc., become manifest and get developed. One feature of this process is that people leave the present-day medical conception, which is based on the notion of 'victim' of and 'battle' against illness, and discover that they have other resources for dealing with life and illness. It will be argued that at the centre of this transformation lies the discovery and development of the 'will', which is closely associated with the willingness to examine one's conceptions of oneself, health, illness and life.
INTRODUCTION Cancer plays only a small role when we look at health care in general: e.g., general practitioners see only few people with a diagnosis of cancer in a year. Yet, tremendous effort has been made in the past 1 0 - 2 0 years both in medicalbiological research and in clinical research to unravel the causes of cancer and to develop better ways to fight it. Despite this effort, the prognosis of the most prevalent forms of cancer (cancer of lung, breast and large bowel) has improved little or not at all in these years. The general outlook on cancer in medicine and in medical research perhaps can be best illustrated by the following quotation, which was taken from the chapter on neoplastic diseases in one of the widely used textbooks on pathology (Robbins and Angell 1971, p. 63): It could be added that the abnormal mass behaves as a parasite and usurps for itself the nutrition of the tissue and host in which it arises. Indeed, in the competition for survival, the neoplasm appears to have a metabolic superiority and can deprive the host tissues of such nutrients as amino acids. These masses frequently, but not always, seem to enjoy a form of autonomy in which they increase in size independently of the influences in their environment. •
.
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In this and most other textbooks, cancer is usually depicted as an enemy, a parasite, which is distinct, different and apart from the 'host' who is usually described as the victim. The therapy is aimed at the destruction of the mass or at making the 'competition for survival' more favourably for the host by fighting the cancer. More generally speaking, cancer is associated for most people with death, suffering, pain, helplesness and hopelesness (see, e.g., van Doom and ZeldenrustNoordanus 1983, and Zeldenrust-Noordanus 1983). Paradoxically, at the same
TheoreticalMedicine 6 (1985), 133-142. 0167-9902/85.10 © 1985 by D. ReidelPublishing Company
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time, people believe that attitude and 'will' may be important in influencing the cancer process. In a recent survey among the Dutch population (Assetbergs 1983), it was found that 75% of the people think that life-style, behavior or attitude can contribute to recovering from serious illnesses like cancer or to delaying the cancer process; 82% of the Dutch public believes that the 'will to live' is important in the recovery from serious illnesses like cancer or in influencing the illness favourably. For 65% of the people, this belief was based on observations in their own environment. Also, in a qualitative study (van Doom and Zeldenrust-Noordanus 1983), in which both patients and general practitioners were interviewed, it was found that for general practitioners serious illnesses like cancer, heart attacks and multiple sclerosis were associated with suffering and helplesness on the one hand and with the importance of the 'will' and the 'will to live', on the other hand. In both the population survey and in the qualitative study, however, there was little or no knowledge among the general public and the medical doctors on what 'will' is or how it can be developed and used. Perhaps, the emphasis in these studies on recovering from serious illnesses like cancer prohibited the exploration of what understanding of 'will' is present. This paper seeks to explore the development of the will as experienced by people with cancer. It further wants to argue that fighting cancer may be an initial impetus for the discovery and the development of will, but not a sufficient cause for this. The findings, which are reported in this paper do not support any hypothesis concerning the conscious influence of people on their cancer, though they may give rise to questions on this topic.
'EXCEPTIONAL' CANCER PATIENTS In a pilot experiment, which was conducted between 1979 and 1983, 12 individuals with cancer were interviewed who were living better and longer than expected or who had recovered completely in spite of a poor or 'hopeless' medical prognosis. These interviews, which were open interviews, were meant to investigate how these people had experienced the illness, if and how they had changed in the course of the illness and what they considered to be their own role in the course of the illness. These 12 people, of which two later died and of which two developed new cancers (different than the original cancer) later, all either had (had) metastases or had been given up. Two of them were men, the remainder women; 5 of them had carcinoma of the breast, the others lung, bowel, kidney cancer, or melanoma. These people covered a broad range of social class, some having had university education, others barely more than primary school.
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The first finding in this pilot experiment was that there were many differences: some people completely recovered from their cancer with intensive medical therapy, consisting of surgery, irradiation and/or chemotherapy; some people stepped out of their medical treatment and completely recovered; complementary to the medical treatment or instead of medical treatment people used various diets, went into psychotherapy, started new undertakings in their lives, developed a meditative attitude and/or changed their life style; some made drastic changes in their lives, others hardly made any; and for some there was an almost instantaneous change in attitude whereas for others it was a gradual process covering 1 - 1 0 years. The analogies between the experiences of these people became more apparent with time. Some of these were: a most subjective and striking finding was that these people made the impression of being more alive than most other people: energetic, spontaneous, sharing joyful as well as painful experiences, and at the same time calm and self-confident; central in most of the interviews was that people had made choices, and how they had made choices; the choice could be for chemotherapy, for psychotherapy or for some entirely different action; the 'quality' of choice (or: source of choice) was experiential; in the course of the illness changes occurred, in varying degrees, in their attitude towards and in their view of reality (themselves, health, illness, life, etc.); usually there was a change in perception of one's own influence in the course of the illness in that one's own influence became more important; at the same time the illness became less important and living one's life qualitatively well was said to be the primary focus rather than the length of one's life. Looking back on their experiences, in particular the change in 'inner attitude' was remarkable. 'Inner attitude' refers to what these people would approximately describe as 'experience of one's relationship with life, oneself, the environment, etc.'. Usually these people talked about themselves before having cancer as being nice, friendly, cooperative, 'doing what I was supposed to do', living up to experiences, etc. Some of them said that they knew that behind their outer appearance they were depressed and lacked a 'will to live'. For some this went on initially after the diagnosis of cancer was made. Two women had three different forms of cancer in 6 - 1 0 years before something inside changed. Invariably, a period came in which these people realized the gravity of their illness. This seemed to be dependent, at least to a certain degree, on the progress of the cancer. Usually, this period was initiated by an incident which threw them back on themselves. "Then I realized that no one could help me", "I was suddenly left alone", "no one and nothing could help me then", "there was no one I could talk with", were some of their statements. Some of them actually chose to be alone: e.g., one woman stayed in a hospital room for three weeks refusing to talk with anyone but a social worker and refusing to make a decision
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about therapy for her (advanced) cancer while being on intravenous feeding. These people said that in this period they started to become more aware of how they had been living: living along the patterns of their families, youth, society, etc. In varying degrees they experienced themselves as being (and having been underneath) victims, and in this period they suffered as such, becoming aware of their, hitherto unconscious, mental concepts about life and themselves. These concepts described, e.g., a life in which one lives according to others' wishes, in which illness, health and death are a matter of chance, in which no real choices exist and in which meaning (as an experience) does not exist. Some described that they also suffered then from seeing how they had not lived their own lives, how they had missed certain chances and how they had repressed insights which had come to them occasionally in the course of their lives. Looking back, most of these people spontaneously said that they also had had some part in the onset of the illness. Going through this period was described as "going through a deep valley", "back to zero", "unit nothing was left", letting go of many assumptions and mental concepts. Then, after a period lasting days to one year, they experiencedhaving choice. They realized somehow that they did not need to be victims, that they had a will. This had a profound effect on their conceptions of life, health, illness, themselves, etc., although often they were not able to make these explicit. Part of this altered outlook was a realization that also in the past they somehow had made a choice to follow the patterns and, in a way, had chosen themselves not to have choice. Following this experience, these people started to act, to fight for life and for the quality of their lives: around that time people made choices for alternative/complementary therapies/approaches and/or made a choice for medical therapy (which they sometimes were already undergoing). This choosing and acting was not confined to their therapy, but was extended to all aspects of their lives. In this acting, people discovered that they "knew much more than they thought they did" and "were able to do much more than they thought they were". In varying degrees, these people became more and more self-referring: trusting their own intuition and insights rather than trusting solely on advice of medical professionals or relatives. They also said that gradually they started to experience more and more: pain and suffering as well as joy, beauty and happiness, their bodies as living entities, the 'intangible' effects that certain places, environments and people had on them, and having a will as an experience of "being energetic" and "directing my energy". Life, health, illness were then seen as processes, living processes, from which people can learn and that people, to a certain extent, can influence and direct. Usually these people would say that it was very difficult for them to describe these processes in words. One man said "I just can't tell you yet; I need time to change my mind". Their
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attitude was something like being a participant, a gardener of life, with a basic experience of wonder, joy and meaning, also in painful and difficult moments. The experience of the will also changed gradually: from being very active and deliberating choices, it became more 'spontaneous', acting naturally on knowing what was right for them.
A MODEL F O R THE D E V E L O P M E N T OF A T T I T U D E
As a simple model, one could perhaps say that before the cancer these people lived without (or without consciousness of) the will. They were 'puppets' of everything that happened in life, in their bodies, etc. Some of the (unconscious) assumptions were that illness, health as well as life in general are governed by chance, that one is totally determined by the past and by the environment, that illness comes from outside or through wear and tear of the body, and no possibility of free choice or free will is seen.
"PUPPET"
Fig. 1. Then the cancer came and in realizing (accepting) it, they became victims (or: became aware of being victims). At that time they started to realize that there was much more inside themselves like experiences from the past, assumptions and mental concepts, intuition, repressed insights, etc. At this point some people at first said that illness is primarily a consequence of past experiences, and later that it is a consequence of their actions (or non-actions). The body may come to be seen as a reflection of how they are living in their situation. At a certain moment a sense of 'I-ness' and free will was discovered in which the reality of choice was experienced. Sometimes this was associated with remembering experiences of having had choices before, though they had hardly been aware of them at that time. In choosing, acting, fighting for life, people would describe their bodies as allies, helping them to be alert and active. At the same time there usually was an emphasis on one's own influence (on their illness, body, life), one's
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Fig. 3. independence and one's actions towards the future. In this stage people are, sometimes painfully, aware of the continuous possibility of choice, and of one's free will to act. In acting, people experienced having a will and gradually started to discover reality as a 'living reality': a reality which they experienced themselves being an integral part of. Mostly, the cancer has become unimportant by then and awareness has greatly expanded. In this, life is experienced as a continuous process in which the experience of oneself both as a unique being and as a part of larger systcms (society, mankind) is simultaneous. The body often is described as a living miracle, a mystery, and illness may be seen as a challenge, being part of the body, of life and of oneself. The experience of free will and of naturally acting upon one's own intuition and hasight seems to be a prerequisite for being a 'participant'.
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f
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"PARTICIPANT" Fig. 5.
During this developmental process these people experienced increasingly more meaning in life, discovered unsuspected strength and wisdom, and developed a sense of individuality. Individuality not as a 'closed system' separate from others and the world, but individuality as a simultaneous experience of one's uniqueness and of being part of a larger reality. Central in this process seemed to be a development of will: the ability to choose from their own individuality and to act on that (see, e.g., Assagioli 1974). The experience of a connection between personal will and a sense of individuality often made people change their social activities. Some of them started to help cancer patients in one way or the other. Usually these people would argue that various forms of therapy (medical, complementary, alternative) may be helpful in relation with cancer, but that the attitude of people and their (unconscious) mental
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conceptions about themselves, their illness and their life is more important. Also, in helping other people, they would stress the self-development rather than fighting the cancer.
PEOPLE WITH ADVANCED STAGES OF CANCER In a second pilot experiment, which was started in 1981, approximately 35 individuals with advanced stages of cancer were counselled. This pilot experiment was carried out to investigate more exactly the underlying nature of the self-development which was found in the exceptional cancer patients. It was thought that providing people with a developmental context similar to the one described by the exceptional patients, could help people with cancer in developing their will and making their own choices in relation to (the quality of) their lives. This counselling which may consist of one session up to many sessions in the course of 1 - 2 years, is intended to help people become aware of themselves and their situation in life and help them to start acting upon their own choices. In the course of such counselling, hitherto unconscious concepts of oneself and of life become manifest as well as insights into what is really needed in relation with themselves and their lives. Often people come into counselling with experiences and insights that they don't dare to share with others or that on sharing with others were critisized or ridiculed. Such experiences and insights usually related to intuitions ("I knew that I had to change my therapy", "I know how I 'made' those metastases") which are in disagreement with the usual concepts of cancer. Having such experiences and (glimpses of) insights as well as being part of the usual culture with it's outlook on cancer, life and people, often made them seek counselling. In the course of counselling, people expand, in varying degrees, their outlook on themselves and on their lives, often re-experiencing incidents from the past, and start to experience life more fully. In particular, exercising their will and becoming aware of all everyday life's choices seems to be helpful in the self-development as well as introspective exercises (imagery, meditative exercises, autobiographic writings, etc.). The development of the will sometimes leads to an experience of individuality, which usually enhances the process of self-development. In the course of this pilot experiment it has become clear that necessary to the discovery and development of the will is what may be called 'willingness'. The willingness "to look into oneself", "to let go of control", "to suffer pain,, "to take risks in relation to the life-partner, working-situation, etc.", "to make choices", "to make mistakes", "to confront one's anger and resentments", "to be alone", etc. These issues, which may be a reflection of more general conceptions in society and culture, constitute an important part of the counselling.
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A choice for such willingness (or a choice not to be willing) seems to be pivotal in any counselling on the development of the will and on the outlook on themselves and their lives. Often, this turned out to be a gradual process, taking months-years, though, rarely, one session sufficed. Going step by step through making choices for willingness, often a deeper level surfaced in the willingness to "confront one's not-willing" and the willingness "to say yes to life".
CONCLUDING REMARKS It should be stressed that the preliminary findings reported here are derived from pilot experiments with a small number of selected people with cancer. Nevertheless, these people may give us some clues about some of the underlying problems in dealing with cancer. One cancer patient said "I didn't need pity, though perhaps I was seeking it; I needed to become aware of my choices, if only -in how I wanted to live my remaining days". Helping people to become aware of having choices and will, makes hidden assumptions come to the surface. Letting go of these assumptions and realizing what effects these have had, is usually a painful process and at the same time an opportunity. In the counselling it became clear that even relatively small choices in everyday life, if sincerely deliberated, can be very helpful in the process of self-development. Also, the extent to which people make a choice for their treatment (even if there is only one possible therapy) may determine the extent to which the will is evoked, which may be a factor in the variability both of the effectiveness of the therapy and of the degree of side-effects that people experience. Perhaps that findings like those reported by exceptional patients, which relate to experiences, to life processes and to participating in these, may help medical science to step beyond the one-sided dialogue with nature which usually is the base of medical research at this moment (see, e.g., Prigogine and Stengers 1984). Exceptional cancer patients may give us some insight into the nature of transformative processes like the changes of mental concepts that they may go through. R U D Y P. C.
RIJKE,
Artsenmaatschap voor Ekologische Gezondheidszorg, Westblaak 35 3012 KD Rotterdam, The Netherlands
REFERENCES Assagioli, R.: 1974, The A c t o f Will, Wildwood House, London. Asselbergs, P.: Confrontatie en toekomstperspectief - publieksenquete, Inst. Psychologisch Marktonderzoek, Rotterdam.
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Doorn, C. van, Zeldenxust-Noordanus, M.: 1983, Confrontatie en toekomstperspectiefeen onderzoek onder pati~nten en huisartsen, Inst. Psychologisch Marktonderzoek, Rotterdam. Prigogine, I., Stengers, I.: 1984, Order out o f C h a o s - Man's New Dialogue with Nature, Bantam Books, New York. Robbins, S. L., Angell, M.: 1971, Basic Pathology, Saunders, London. Zeldertrust-Noordanus, M.: 1983, Confrontatie en toekomstperspectief - een litteratuurstudie over psychosociale factoren en kanker, Inst. Psyehologisch Marktonderzoek, Rotterdam.
