Waller, D. and Sibbett, C.H. (Eds) (2008) Art Therapy and Cancer Care. Seoul, South Korea: HakJiSa Publisher / OUP.
Chapter 16. An Art Therapist’s Experience of Having Cancer. Liminality: Living and Dying with the Tiger
Introduction
‘Back and forth autoethnographers gaze, first through an ethnographic wide-angle lens, focusing outward on social and cultural aspects of their personal experience; then, they look inward, exposing a vulnerable self…’ (Ellis and Bochner 2000:739).
Whilst chapters 2 and 4 focused on the socio-cultural dimension of art therapy in cancer care, this chapter will focus more on the ‘vulnerable self’: my own experience of liminality as a cancer patient and art therapist. As outlined in chapter 2, this is based on researchundertaken for my PhD as a form of ‘arts-based autoethnography’ (Slattery 2001) and ‘auto/biography’ (Stanley 1992).[1]
Firstly, I will explore my ownexperience of having leiomyosarcoma, a rare form of soft tissue cancer, and my related art-making. To develop the discussion from chapters 2 and 4 this exploration will be done from an anthropological perspective, paralleling my experience with a rites of passage transition (Van Gennep 1960), associated ritual and particularly the state of liminality (Turner 1995).
Secondly, I will explore the impact on my self as an art therapist working with people diagnosed with cancer. I had been practicing in cancer care for some years before my diagnosis and then stopped working in this area until my supervisor and I felt I was ready to commence again. It will be suggested that when working with those in liminal states we can experience what might be termed secondaryliminality. The discussion will also refer to issues such as countertransference, re-stimulation, working with the dying, and self care.
Wounded storyteller
This story is an illustrated ‘auto/biography’ (Stanley 1992), or ‘autopathography’ (Couser 1991), as, in my role of ‘wounded storyteller’ (Frank 1997), I narrate my own experience both as a cancer patient and as an art therapist working with those affected by cancer. The research includes my own personal and professional voices and therefore this will not be an ‘author-evacuated text’ (Geertz 1988:9). This will be made explicit by writing in the first person and by the inclusion of biographical and personally reflective material and artwork. The research explored the concept and experience of liminality – how I felt being in a liminal, transitional or ‘betwixt and between’ space (Turner 1995:95), living and practising at the threshold between life and death. The story encompasses my attempts to make sense, through words and art-making, of having cancer and fluctuating between states of ‘acute liminality’ – heightened risk and reduced control - and ‘sustained liminality’ – less risk and more perceived control (Little et al. 1998:1490) – a fluctuation which may last for the rest of my life.
Congruent with literature on the structuring of autobiographies, my self-study is organised around ‘turning points’ or ‘epiphanies’ in my experience (Denzin 1989). This includes times that I regarded as a ‘nodal moment’ or ‘point of crisis at which time… lives underwent a wrenching’ (Graham 1989:98-99). However, my personal story is also an inter-personal one and so at times I include references to ‘mentors who evoked’ me (Palmer 1998:21) by interweaving a number of voices with my own, such as those of some of my doctors and clients whose stories particularly resonated with mine.
Personal Liminality
In trying to understand my own cancer experience I found the concept of liminality and its characteristics (Turner 1995) congruent with my experience and thus to be ‘a major category of the experience of cancer illness’(Little et al. 1998). Key characteristics of liminality - limbo, power / powerlessness, playing, communitas and embodiedexperience - all seemed relevant to both my cancer experience and art-making and I will now reflect on each of these.
Limbo
One characteristic of liminality is a sense of limbo, ambiguity, being ‘betwixt and between’ and ‘out of time’ (Turner 1988:24-25, 1995:95).
In the early summer of 1998 things were going well for a change. I had just successfully completed my first year of a Masters course at University and, with confidence growing, had decided to try to move from sessional therapy practice and teaching to pursue a more full-time career in these areas. However, I had also first noticed the lump on my arm. Although I didn’t realise it at first, I was beginning to slowly but inexorably move into the realm of liminality and limbo.
After some time, when the lump did not disappear, I went to my medical practice several times between that summer and the next year. Each time I was given a probable diagnosis of a sebaceous cyst. However, because it continued to grow and be increasingly painful, I requested action and was referred for minor surgery. This was done in August 1999 by my GP who realised during the surgery that it was not a cyst and thus the nature of the lump was unknown. However, things took a turn for the worse because I later discovered that the removed tissue was not sent for histological analysis but was disposed of, meaning that I did not get a diagnosis. The lump had not been completely removed and so it continued to grow in size and painfulness and therefore I requested a hospital referral.
An additional difficulty was that the GP involved stated that it was not routine practice in that surgery to send such tissue for histological analysis, whereas I was informed by medical colleagues that guidance on minor surgery in general practice stipulates that ‘All tissue removed by minor surgery should be sent for histological examination’ (General Medical Services Committee and the Royal College of General Practitioners 1996:5) and, referring to histology policy in basic surgical technique, it simply recommends ‘SEND EVERYTHING!’ I had various communications with the GP to try to ensure that practice would be changed to become congruent with this guidance, however this resulted in my having no confidence that such change would occur. Therefore I proceeded with a complaint that was subsequently upheld by an Independent Review Panel of the local Health and Social Services Board. This Panel also deemed the tissue disposal to be a ‘grave error’ with ‘life-threatening consequences’.
Back at the time of the minor surgery, my lack of a diagnosis also meant that I was not rated as urgent and so the first available hospital appointment was in January. At this appointment I saw a specialist registrar who arranged for me to see the consultant surgeon. By this time my teaching and therapy practice had started again after the Christmas and New Year break. However, three days before the consultation with the surgeon I received a hospital letter telling me the appointment was cancelled and re-scheduled for four months later. My sense that something was wrong urged me to refer myself privately to the surgeon who I then first saw in late February 2000. Clearly he too felt that it was important to get a diagnosis because he scheduled day procedure surgery for six days later and a further appointment eight days after that to receive the results. This was one year and eight months after my first presentation to a doctor.
Surprisingly, looking back, I don’t think I suspected consciously that I had cancer, even when the surgeon arranged surgery so promptly. Perhaps it was literally unthinkable. Certainly my family and I were not talking in terms of this, but rather I was caught up in just getting action. Even on the day of the getting the results I was alone and drove myself to the private clinic and was planning to teach that afternoon.
However, some part of me knew at some level that something was wrong. This awareness seemed to be a form of ‘unthought known’ (Bollas 1987:282) based in the ‘somatic unconscious’ (Wyman-McGinty 1998). This urged me on to continue to seek medical attention despite several misdiagnoses, failure to get a histological examination and resulting lack of a re-diagnosis, and hospital delays. The awareness perhaps manifested in some of my dreams and in artwork during those several years and urged me to action.
Prodromal symbols
A ‘prodrome’ (Gr. prodromos: ‘running before’) is an early symptom, occurring prior to and indicating the onset of a disease (MHI 2002). It has been suggested that drawings and dreams can have a ‘prospective’ element (Furth 1988:23), for instance prodromal dreams of cancer (Hersh 1995). It has been further suggested that during cancer images can be a ‘messenger’ like prodromal dreams (Malchiodi 1998:165-194) that can, even pre-diagnosis, indicate a pre-conscious knowledge of the illness and its outcome (Bach 1990; Bertoia 1993:3), prognosis (Achterberg 1985) or dying (Mango 1992).
I first noticed the lump in early 1998, but my oncologist informed me that cancer had probably begun two years prior to being noticeable, i.e. around 1996. For several years before I discovered in 2000 that I had cancer, a number of artworks and dreams had been disconcerting and, at the time as recorded in my journals, had heightened my sense of being in danger and of my death. I had never had such dreams before this.
I found an unremembered drawing from 1996 depicting me with a skull-like face and a damaged left arm showing a mark highlighted on my upper left arm. The tumour site was in my upper left arm. In October 1997 I dreamt my right foot was painful and there was something below the skin like a piece of bone. In the dream I worked it out through the skin and it was an inch long oval piece that was sent for analysis and proved to be a piece of shell. However, in the dream I knew a part remained inside my foot and this was not good. When I awoke I realised there was nothing in my foot but I was left with a sense of anxiety. In January 1998 I dreamt I was dancing with my own Death Certificate, but on waking was annoyed that I had missed the opportunity to look at the date on it. In April 1998 I dreamt I was in a stationary car being trampled over by a huge horse, then an ox and then my heart sank as I knew a herd of cows would follow and nothing could stop them and I would not survive. In 1998 I dreamt I was patting a tiger on the head and although it was large and powerful, it was letting me do this. It was life-threatening, yet a companion.
In October 1998 I made a ‘SelfCollage’ (figure 16.1; and front cover) in which the left side depicted threatening vulnerable aspects of myself and the right side depicted nurturing positive aspects. All the meanings below were recorded at the time of making the image. The image features a central tree and at its base are shells and horns and in its trunk is a metal DNA helix or caduceus. The () shapes between the helix are mandorla (almond-like) shapes that were recurring through my art during these several years. On the left is ‘dead wood’, a ‘petrified forest’, that evoked feelings of death and terror. On the right is the Green Man, a figure that has been important for me since first appearing in my art in August 1996. He symbolises an animate form of the tree thus representing life and contrasting with the death of the petrified forest. I also associate this figure with Mercurius (or Hermes) who Jung (1981, CW13, para.243) describes as the ‘numen of the tree, its spiritus vegetativus’ and as ‘the life principle of the tree… The tree would then be the outwards and visible realization of the self.’ Perry (1997:149) describes Mercurius as ‘he who abides at the threshold (of change)’ and Mercurius is also known as Hermes who Stein (1983) regards as the guide of souls through liminality or threshold situations. On the left of the image, there are fragmented symbols featuring mother-of-pearl and a quaternity, whilst on the right are similar yet integrated symbols.
Regarding the mandorla shapes, in 2000 the specialist registrar indicated the area on my arm where the surgeon would operate by drawing such a shape horizontally on my arm and it was to become the shape of the surgery wound.
Figure 16.1. about here (Self Collage)
The week after making the collage I dreamt that two large lions chased me upstairs in my house. I was terrified because there was no way to escape from them although I woke up just as they were about to eat me. Was this a rising of danger toward consciousness?
In January/February 1999 I had two powerful death/reincarnation dreams. In the first I was travelling in a car and was being shown images, flashed to the front left, of places on the journey ahead. Then they began flashing in rapidly and became distorted, surreal and terrifying and I was ‘told’ that these were now images of the journey ahead after my death. Later in the dream, after my death, I was in a huge covered area with crowds of people milling about. People were getting on large trains-like vehicles and I knew I had to get on one. Although we did not know exactly where they were going, I knew they were taking us to the next life. At the time, I noted in my journal that Bertoia (1993:124) suggests that rebirth ‘refers to some form of transcending death, of being reborn into some new frame of existence’ and it also applies to ‘the development of some form of tolerance for the dying process and for what happens after this body dies.’ Jung (1960:410) suggests rebirth symbols of change, such as journeys and changes of locality, can be associated with changes in psychological condition and with approaching death. The next night I had another dream where I was in a corridor or room with many doorways to other rooms. I knew that each room was another life.
In February 1999 I made a ‘Self Box’ and its front was open and I recorded at the time that the threshold seemed important. I hung strips of black crepe on either side of the opening and this was very disconcerting at the time because I felt strongly that they related to my own death.
Looking back, this all seems curious yet could be unconnected to the fact that I had cancer developing throughout that period. However, the heightened death awareness these symbols brought was part of what prompted me to seek medical attention even though I was not consciously aware of cancer. Perhaps what might be termed prodromal symbols can occur in dreams and artwork during the early stages of disease such as cancer thus communicating an ‘unthought known’ (Bollas 1987:282), perhaps known by one’s body.
Diagnosis
In late February 2000 my surgeon performed surgery and removed the lump by excising down to the muscle, commenting that I must be alarmed by how much tissue he had removed. Eight days later I returned for the results, alone. As I entered his room he told me that he had got the results earlier in the week but had wanted to see me in person. My alarm bells rang. As he told me the diagnosis, in an instant my world changed, time altered and I plunged into acute liminality. Some part of me was reeling whilst another part listened intently. He was saying I had a rare malignant soft tissue cancer. He was introducing me to my new ‘companion’ but, as often happens with introductions, I did not quite catch its name at the beginning. Later I checked its name and knew it to be leiomyosarcoma and then, as our relationship grew closer, I could sometimes call it by its contraction, LMS.
The surgeon was telling me he had ‘smelled a rat’, i.e. suspected cancer, before operating and now this was confirmed by histology. However he also cautioned that he had been unable to get clear margins underneath the tumour despite exposing the muscle. I was being referred to an oncologist while they determined whether to operate again or not. Leaving the clinic I was alone and in shock and as I drove on the motorway to teach that afternoon, I was thinking ‘put it away… don’t get emotional… put it away somewhere, I have to put it away somewhere very secure. In a box, a box… heavily wrapped up and sealed. Wrap it up, wrap it up again, tie it up, sealed, packaged.’ I was also wishing I didn’t have to tell anyone so that they wouldn’t have to be upset.
When leiomyosarcoma was confirmed I entered a limbo state on the threshold between life and death where both became simultaneously sharply real and surreal. I was experiencing liminality, which I later learned Little et al. (1998) describe as a major category of the cancer experience. Liminality stems from the Latin word limen meaning threshold (Turner 1982:24). I was plunged into a ‘betwixt and between’ (Turner 1995:95) space of risk, suspense and timelessness with a heightened emotional engagement with death and paradoxically life.
Over a period of time the doctors debated whether to perform more surgery but instead decided on radiotherapy. The sense was that the horse could already have bolted due to the delay in getting to hospital and the disruption of the tumour during the earlier minor surgery. The diagnosis also began what was to become an ongoing process of tests, CT scans and so on. There were seemingly endless hours of waiting – waiting for appointments, waiting for scan results, waiting for the sword to fall, or not. A visual metaphor emerged of having a ‘sword of Damocles’ (Cicero 2001) suspended over my head. I later discovered this metaphor had been used in the literature on cancer experience (Muzzin et al. 1994; Riskó et al. 1998; Self 1999).