Co-Research: The Making of an Alternative Knowledge

DAVID EPSTON

 

PUBLISHED BY: narrativeapproaches.com (all rights reserved) CO-RESEARCH – THE MAKING OF AN ALTERNATIVE KNOWLEDGE

Note: An Abridged Version of this paper was Published as ‘Co-research: the Making of Alternative Knowledge in Narrative therapy and Community Work (19999), The Conference Collective, Dulwich Centre Publications, Adelaide, South Australia, PPS.137-157.

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Co-research was a term I concocted in a very specific set of circumstances to describe to myself and others a practice at considerable variance to ‘family therapy’ of the late 1970’s. Around that time, I began a very valued association with Dr. Innes Asher, a respiratory physician at the Department of Paediatrics, University of Auckland. We began to collaborate around those children, adolescents and their families who were suffering the experience of life-threatening, chronic and often disabling asthma. Such suffering as I was to learn, had no ‘voice’, no vocabulary and no place in the bio-medical discourses. If anything, it was rigorously excluded. A ‘good patient’ was calm and enduring and such manners were certainly expected of the family members concerned. But such a life threatening asthma referred to as ‘brittle’, could happen almost any time day or night seemingly with little or no warning.

The first young man I was to meet was 12. By then, Ronny had suffered numerous respiratory arrests, each one threatening his life, following his first arrest on the occasion of his 11th birthday party. What made matters grave was that he had also started cardiac arresting, although his heart according to the cardiologists was ‘as strong as an ox’. His parents, who lived a 60 kilometre ambulance-ride away from the Children’s Hospital could only submit to two sleepless nights before Ronny insisted on returning to the hospital. He was so concerned for his parents’ well-being. Such was the hospital’s concern for him that a suggestion had been floated that he live in intensive care. Everyone worried that he did not have long to live.

In fact, I noted when talking to hospital staff involved in his intimate care, they would betray their fears for him without even knowing it – a slight tremor at the mention of his name. However as I canvassed everyone a nurse on the night shift told me a story I will never forget. She has to remain nameless because by the time I realized its significance, she was lost in the regular rotation of nurses throughout the hospital.

One night when Ronny rang his night alarm, she raced to his bedside and found him in great distress. This usually signalled an arrest. However at the same time, she was summoned to another alert which had priority and there were no other nurses available at that moment. She had to leave Ronny. She called upon all her courage, looked Ronny straight in the eye and shouted – “STOP IT!” They were both stunned by the fact that his distress immediately abated and she was safely able to leave him. Although this had been duly noted in his ‘medical chart’, it went unattended to …..a mere curiosity. This incident, considered at some length, became foundational to a ‘courage practice’ that was trialled with consent under the most hazardous conditions. I was permitted, in a manner of speaking, to give him asthma attacks. I had noticed that my mere mentioning of the word ‘cough(ing)’ was more than sufficient to bring on extreme wheezing. With Dr. Lousie Webster on medical guard behind Ronny and me, we commenced to ‘arrest arrests’. For example, when he was mildly distressed, I would offer him a handful of coins and ask him to pick one. I would then ask him to read the date on it. My next question – “Ronny, what was it like to arrest an arrest?” – was met by great bemusement. On each trial, I allowed his wheezing to worsen until the final occasion. He began to lapse into semi- consciousness turning an awful blue. Dates on coins were no longer of any interest. I seized his hand, gently squeezing it repeating – ‘Feel my strength passing into your mind and body’. I sensed I was losing him at the same time as my strength was running out. With my last gasp, I fiercely squeezed his hand and shouted – “STOP IT!” To everyone’s amazement, he did exactly that and stopped it. Obviously confused as a full day had been dedicated to ‘arresting arrests’ he jumped to full attention and rushed out of the room like the Mad Hatter saying that he was late for an important x-ray date. The nurses from the nearby nursing station rushed in seeking information. Louise shouted – “He did it!” and like wildfire, the news spread around the ward and beyond.

Ronny was soon able to return home to live, had only one further hospitalisation and was able to resume a normal life. Innes and I have kept in touch with him one way and another ever since.

This was a formative experience in convincing me there were ‘alternative knowledges’ to the more conventional treatments for which Ronny had exhausted each and every possibility. What was particularly significant was where one might seek such knowledges – the metaphorical space created through an externalizing conversation between the person/family/their carers and the illness/disability.

Family therapy theory and practice in the late 70s and early 80s had also considered this but I found them at worst ‘family-blaming’ and at best ‘family suspicious’. Lyman Wynne summed up this state of affairs in 1992:

The family system explanations of illness can be regarded as an alternative version of the societal and traumatic life-event interpretations of illness. In each of these versions, not the individual but a larger social unit (family or society) is viewed as ‘disturbing’ or ‘sick’. The hypothesis that family systems are causative in generating or maintaining symptoms provided much of the impetus for starting the field of family therapy”.

(Wynne, Shields & Sirkin, 1991, p.13)

Concerning life-threatening asthma, whereby family members had been involved in numerous life-saving incidents, either directly by administering CPR or indirectly by apply for ambulance or intensive-care services, for me to operate on a family-suspicious basis seemed a grotesque travesty of benevolence, let alone a professional practice of therapy. I became determined to find an alternative frame of reference so I might meet these people with compassion rather than suspicion. First of all, I took ‘suffering’ to be the designated ‘problem’. And by doing so, ‘suffering’ more or less became everyone’s problem. And such suffering was beyond the scale of anything I had known close up. Unfortunately, there was more to come.

In the late 80s, I felt I had no choice whatsoever to further this endeavour to find an alternative when I met the membership of the Dystrophic Epidermolysis Bullosa Research Association. Although this is retrospective, I believe I got the word ‘research’ from sheer plagiarism of their use of research in their naming themselves. When I was first contacted by a colleague, Nick Burtchell, a pediatric dermatologist, I recall being at pains to first learn how to pronounce it and then find out what in the world ‘DEB’ as it is known – was. He informed me it was a very rare genetic disorder variably affecting around 70 individuals in New Zealand. What I did remember most vividly was his description of a missing gene that metaphorically meant that it was like concrete without reinforcing steel. Without such reinforcement, the skin is extremely vulnerable to blistering or rupture at the slightest pressure or touch. The pain associated with this was so excruciating that lancing by razor blade is the only means of relief. Because of the many wounds, parents have to debride their children’s skin before bandaging it which is felt to be as painful as intentional torture.

There was no way whatsoever I could have been prepared or have prepared myself for the prospect of parents being obliged daily to act towards their children in ways everyone knew was inflicting excruciating pain. Young children could not be expected to mediate such sensations into dignified suffering. The pain was just too painful to be distinguished as benevolence or care. I found myself just running out of empathy – if that is the capacity to step into another’s shoes. This was truly outside of what I could conceive. Nor could I fathom what it might be like to revive a comatose child who was arresting and how such a hazard could ever become a part of my everyday life. I felt like an alien and the very best I could hope for was a very rough translation, however uncertain and circumscribed by the limits of my own experience.

I had to ask myself – to what extent can a person participate in anothers’ feelings or ideas? After all, empathy rides on the faith that the grounds of experience between myself and others are similar, such that I can know what another is feeling based on what I might feel in such a situation. But what if the situation remains beyond your grasp, despite your best efforts to imagine yourself into it?

I decided to take ethnography (or better put the doing of ethnography) as my means of operating. Rather than thinking of myself as possessing some ‘expert knowledge’ that I might apply to those consulting me, I made seeking out fellow-feeling as my primary concern. After all, in every instance, the various expert knowledges had exhausted themselves of their very own expertness or frankly admitted that they could do no more than palliative care. For me to presume to substitute some sort of ‘psychological’ expert knowledge would have been insolent and immediately rendered me ‘suspicious’. By the same token, my ‘suspiciousness’ could very well have been experienced as blaming as had often been the case despite my best efforts to redress that.

Other questions I was asking myself were-

• How could I request people in peril to stop seeking rescue but rather turn to themselves and each other?
• How might I proffer something other than a ‘miracle cure’ to take the place of the forsaken ‘medical cure’?
• How could we all take up different relationships with each other and the Problem of suffering?

I had observed that the discourses of biomedicine and the discourses of miracles produce patients and petitioners who fervently looked beyond themselves for ‘cure’ and/or ‘salvation’.

I chose to orient myself around the co-research metaphor both because of its beguiling familiarity at the same time as it radically departed from conventional clinical practice. I brought together the very respectable notion of research with the rather odd idea of the co-production of knowledge by sufferers and therapist. What made this possible, in the first instance, was a fairly thorough-going externalizing conversation, one in which the Problem was a problem for everyone – and here I included myself. Here’s where I parted company from the disinterested ethnographer. This has led and continually leads to practices to discover a ‘knowing’ in such a fashion that all parties to it could make good use of it. Such knowledges are fiercely and unashamedly pragmatic.

This work has been carried out in the spirit of the reflexive methodology proposed by Mary Gergen for what she has referred to as ‘the reflexive elaboration of the event’.

Here series of descriptions were generated and then offered for the inspection of others. Now in Mary Gergen’s words –

The attempt is to launch oneself into discourse around a given set of events and to expand continuously on its meaning through dialogic procedures (for that read narrative- styled questions and answers here). With each new lamination of meaning, the attempt is to break the hold of the ostensible ‘real’ created by preceding accounts. In effect, the hope is to generate a process of continuous reflexivity, enabling new forms of linguistic reality to emerge…..

Self-reflexive methods become independently reciprocal, and the term ‘reflexive’ is applied not to one researcher but to relations between investigator and research participants”.

Ashley was not yet three years old when his parents, Colin and Kathy approached me about his severe dystrophic epidermolysis bullosa. They sought for me to prescribe his future and theirs, something I was quite unwilling to do. Instead we commenced to co- produce a sufferer’s or insider’s knowledge under the umbrella of reducing their suffering in general.

The Dystrophic Epidermolysis Bullosa Research Association became a precedent for what I have come to refer to as a ‘community of concern’. I commenced advertising such a practice in a very scrupulous and transparent fashion. It was advantageous, to be sure, that they themselves used ‘research’ in the very naming of their association. So difficult and rare were their circumstances that many swore they owed their very lives to the existence of their annual conventions and the forum of their quarterly magazine. With everyone’s consent, I made it my practice to circulate the letters i wrote to one family around their community, thanks to their Newsletter. At the annual convention, a day would be set aside for co-research. In the morning, I would review whatever co-research projects were underway (for example, the project Kathy and Colin and I had evolved which I will show you immediately) with all their ‘community’ of around 200 people gathered around us. In the afternoon, groups would break into what they ironically called ‘case conferences’,, made up of children, families, extended family, friends, professionals to reflect on the ‘knowledgeableness’ of the family concerned. Such a knowledge would then be considerably enriched. Their own knowledges – often miles apart – were often evoked when referencing their own experiences with DEB against the co-researching agenda. Thrilling surprises were always in the air which often set the co-research agenda for the next year. To bring this all down to earth, here is the first co-research letter circulated through the DEBRA Newsletter.

 

 

The next letter is to a family I met in Auckland. They had sought me out after a DEBRA family had an article about their 8 year old son called ‘A Small Miracle’ in Women’s Weekly. I appreciated the ‘small’ but could have done without the ‘miracle’. Their 14 year old daughter suffered from psoriatic arthritis and over the past year or two had failed to grow, had abandoned her friendships and given up on her ‘rehab’ which meant she was going to be wheelchair bound. What you will see is my lengthy reply to Jill’s equally lengthy letter seeking a ‘cure’. They lived hundreds of miles away but were only to happy to consider a pilgrimage. To my knowledge this letter written in early 1989 is the second time I used the term ‘co-research’ in a written document. Given their circumstances, I felt required to provide a full account of a co-research practice as possible so as to reach some understanding for any meeting we might have.

 

 

Allow me to pass rather quickly to what I have been referring to for almost a decade as the archives of the Anti-anorexia/anti-bulimia League. The problems of so-called anorexia/bulimia have consumed me up until recently. Anti-anorexia allows us, if we listen carefully, to hear what Anorexia has to say and how it says it. But it does not tell us its purposes or causes. That is for all of us to find out. How does anorexia enter a young woman’s life, impersonate her for a period of time before becoming her cruel ventriloquist? What is so frightening is that the words coming out of so many mouths in any number of mother tongues are so much the same. For reasons such as these, should we then concern ourselves as to what is this ‘power’ that is pulling so many strings on so many lives? Furthermore, how does such ‘power’ spin so m,any deadly webs that entangle so many young lives, bleeding them of hope so that nothing but their annihilation is imaginable? How does anorexia conceal itself so that it can proceed without much resistance to speak of or hardly any public outcry? Anorexia’s ‘power’ is so treacherous, so insidious in fact that it has young women torture and violate themselves while it remains in the shadows of their lives stalking them. Anorexia not only claims its innocence but goes further than this. It now promises these young women the means to escape the very web in which it has ensnared them. Each and every attempt to reach the anorexic standard and their inevitable failure to do so unwittingly tangles them more into the web. And the web now starts closing in on them, slowly but surely squeezing the life out of them.

It has always been my practice to heavily document it from my very early days as much for self-protection as anything else. Bob Dylan sang something to the effect – “If you are going to live outside the law, you had better know what the law is!’ The philosopher, Michel Foucault, advised the documentation, authentication and circulation of ‘alternative knowledges’ if they were to do what he proposed was their work – that of critique. I have always kept this in mind. Anti-anorexic documentation has taken many forms and the ‘itineraries’ of their circulation have become international, now being carried by fax and email. Perhaps the five boxes currently stored in my garage will soon move to some hypertext or electronic home. To be sure, I’ll still keep my boxes of archives as back-up.

Why did I choose the term ‘archives’ and come to think of myself as an archivist? First of all, an archive, according to the Concise Oxford Dictionary, “is a place where public records are held”. In the early days, the archive operated in a very crude way – I would Xerox copies of archival material and post them on request. These archives have been both a resource to and exemplary tales of a ‘counter-practice’ -commonly known as anti- anorexia/ anti-bulimia – to what I refer to as the social practices of anorexia/bulimia.

Many have called upon these archival documents to inspire their own resistance. Often those who loaned the documents later wished to contribute their own. The most common response to being read a document has always been ‘Can I have a copy that ?’ This growing body of documents – these fragments of an ‘alternative knowledge’ – needed a name. The Archives was an obvious choice. It’s main purpose was to merely store in good care and find ways to index it so anything could be easily retrieved. Many of the first generation of League membership bitterly complained that the various professional literatures concerning anorexia/bulimia either dismayed them or made them actively ill. The more auto-biographical genre of the “I am an anorexic’ type seemed to offer readers little chance for escape. More than anything else, it remains a literature of despair.

The requests for archival material soon became too onerous and the means of its distribution too unwieldy and expensive. The archives themselves were growing at such a rate that they were starting to defy my means to even store them.

From 1992 on, many League members had been urging me to compile the archives and make them available by way of a book. As such, this would have required the format of an encyclopaedia and I doubt if any publisher would have considered that a viable proposal. I could not imagine my way out of this until I hit upon the idea of a conventional book (well, not really that conventional) that could be read for itself at the same time as serving as an orientation for a more complete archives, lodged on a web- site. Hypertext space is far more generous and less costly that textual (book) space. Otherwise, I should have been required to reduce say 5,000 pages down to 200 pages and no matter how hard I tried, it was an utter impossibility. The integrity of the archives had to be maintained at all costs rather than an ‘anti-anorexic’ book of greatest hits.

I envision such an archives of resistance to be both a resource and a platform for anti- anorexic developments that are as yet currently unimaginable to me. I hope too that it will be the means to a movement that will operate both underground and above ground conscientiously object to, resist and finally repudiate anorexia and bulimia.

I suppose by now 200 to 300 people from around the world have contributed to it, although every document forwarded to me has not been included. Most made their contribution for the express purpose of fostering disobedience and protest to anorexia. Many of the contributors suffered dearly for having done so by various forms of anorexic torment but they did so nonetheless. Still, we should remember that. It is more than a decade old now and sadly I have lost touch with some of its most notable contributors. But what wedded us all together into a ‘community of concern’ was this archival knowledge that provided a place to speak from and retreat to.

Such records of resistance tell too of the horrors and inhumanity of anorexia/bulimia, and lifts those up who have suffered and are suffering so that we can witness their testimonies, keep their legacies alive and most importantly pay them our respects.

Once provided with the means to speak against anorexia/bulimia, almost to a person, aged 12 years of age and over, everyone has railed against many of the ‘psychological’ and ‘psychiatric’ constructions of them as ‘anorexics’ or ‘bulimics’. The ‘stories’ from the insiders are incomparable to the stories written about them by outsiders. Why is it that insiders regularly refer to anorexia as either a grotesque manifestation of evil or the devil when such terms have otherwise been consigned to the dictionaries of the histories of words?

These documents can take many forms as you will see but what is common to them all is their manner of speaking – anti-anorexia – an anti-language, a radical form of an externalizing conversation.

The following quotation is one of the first public statements by the so-called ‘anorexic’ Ellen West written prior to World War 2. She was later to suicide. Or was she executed? But first let us listen carefully to her words, the only manner of speaking she had to express the horror of her life:

I don’t understand myself at all. It is terrible not to understand yourself. I confront myself as a strange person. I am afraid of myself; I am afraid of the feelings to which I am defencelessly delivered over to every minute. This is the horrible part of my life; it is filled with dread.. Existence is only torture….life has become a prison camp….I long to be violated….and indeed I do violence to myself every hour of the day”.

If she could have spoken anti-anorexically, she may very well have proclaimed her conscientious objection to anorexia rather than such a confession of her supposed offences.

Anorexia, why are you trying to confound and confuse me so that the contradictions I experience as growing up as Jewish woman in the Third Reich are obscured? Why did you appear just when I started to make myself up? How did you turn my critique into my estrangement? Why would you want to turn me against my very desires, wishes, opinions and appetites? And if I were to reflect upon that with a community of like-minded women such matters as how and why you conscript us into prison camps where we are defenceless against your tortures and violations, might we turn against you rather than our bodies, minds and spirits?

Any document is so obviously intertextual in that no one I know has ever contributed a document without having had some access to other archival material. Such material is continually circulating and if I had another hour, I would have liked to have shown you some of the ‘travels’ of a document and how when it returns home, so many more documents come back linked to it.

The ‘reading’ of archival material, although poorly co-researched so far, is about as far away from reading a text book as you can go. Metaphorically, you might consider the archives as a web-site with each reader authorised to either follow some existing ‘trails’ through the ‘web’ or to blaze their own. How many people here rely on the index at the back of the book to guide you through it? Indexing will be vital to such a web-site as you might wish to follow say Gloria, her daughters – Jo-anne and Jenny through letters of the 20 meetings or so we had with their commentaries, pages of transcripts, and the ways their documents were taken up by others and to what purposes. By the same token, you might like to look up ‘breaking the spell’ and go to pages 11-12, 520-530, 711-722, 800- 819 and so on.

What is most important for me is this – that the documents record the very knowledge-in- the-making and to reveal it as such. There is no wish at all to use the conceit of ‘completed knowledges’ that promise to have all the answers. By comparison, the archive would wish to provide some of the best and most poignant questions and pertinent lines of inquiry. I am referring to the distinctive ‘reading’ the archives call for as resonation. The archives are read for inspiration rather than right answers, prescriptions,etc.

Here are some of my favourite questions to a person with whom I have just shared an archival document –

Lee, did Judy’s account of her betrayal by anorexia ring any bells for you?

Lee, did Judy’s account of her betrayal by anorexia enable you to see anything about anorexia that it had been blinding you to up until then?

Lee, did Judy’s account excite your mind in any anti-anorexia way? And if so, how? Lee, were you able to connect in any way, shape or form with Judy’s account?

Since most documents are knowledge-in-the-making, (most people resonateto this), although they may or may not concur with say Lee’s specific conclusions.

I am going to try to quickly take you through a sequence of events whereby Brett resonates with Robyn’s account of unmasking anorexia and then Carla’s resonation in the form of ‘uncanny experiences of a religious nature’.

I SEE THE LIGHT

It was early on in the year and the humidity was extreme the day I meet Brett, aged 12, and his parents, Lynley and Kevan. They had driven three hours desperately seeking help for Brett. Over the previous 3 months, Brett had lost 35% of his body-weight and more recently had been losing weight at the rate of 7 pounds a week. Brett had been deceived by anorexia into believing that he could live by water alone. It also commanded him to exercise throughout the night. Through our first meeting, Brett was decidedly unhappy regarding our discussion. Meeting his demands to turn off the fan and shut all the windows produced a stifling atmosphere. I recklessly externalized perfection and for the first time, Brett responded with a measured degree of enthusiasm. I followed this with: “Do you think anorexia and perfection are like a married couple?” Brett agreed and to my surprise said: “You understand. You are my brother” and as rapidly as he had engaged in conversation, he summarily dismissed me with: “Now shut up!”

I met with Brett and his parents once again. Brett, by now, had been admitted into hospital in nutritional emergency. It was certainly an unforgettable meeting. Brett set the meeting in motion by handing me two drawings he had completed the previous day for my inspection. Casting my eye over the seductive and compelling Anorexia Nervosa, beckoning him with the waggle of her finger, I asked – “How do you like my make- over?” Is that how Anorexia looks to you?” “Yes”, he replied. I furthered my inquiry – “Is Anorexia sweet and inviting?” Brett rejected this prospect – “NO. . . she is obviously trying to make herself look neat!” Calling upon the archives, I asked him if I might show him a video-tape of Robyn from last week, how she SAW Anorexia for her very first time. I informed him that Anorexia had captured her for five years up until that very moment. Brett told me it was fine to go ahead.

We all watched a short edited version of a video-tape in which Robyn tells the following:

DE: Robyn, from what you have been telling me, does that mean you have unmasked Anorexia?

ROBYN: Yes I have. In fact, unmasking Anorexia is crucial. It is the crux of the matter. DE: Can you tell me how you registered Anorexia unmasked for the first time?

ROBYN: I had a fight with my parents. Fights usually herald several pro-anorexic days because straight after a fight, I can’t eat. It’s like a button being pushed. I was tremendously upset and decided to hide down by the pool in the back yard. I then saw this ugliness that scared me witless but at the same time, I was able to face it. I really identified it as an evil spirit. I felt it’s grip . . .it’s bite. We were locked in combat for between a quarter and half an hour. It started with panic and guilt over what I had eaten over the day. Physically, I was feeling sick. I felt a gut dread . . .an unfocussed dread. But then for the first time, I saw its true face. I had never seen anything so hideous. It’s a monster, black with indistinct features. It was more an emotional concept. MY TORTURER; It did manifest itself as a force of being, an evil power. I got the feeling I could oppose it. I struggled with it in hand to hand combat. I prayed to strengthen my resolve. I won that fight but it wasn’t a fight that was all mine”.

Robyn then paused for several moments and becoming far more relaxed and even serene, she proceeded with a kind of summary.

I’ve seen it now. It will never come to this again. I’ve seen its chilling side. . it’s cunning side. THE UNMASKING OF ANOREXIA is crucial. I think I know what it is now. Now when it tries to trick me, more and more I see them as tricks. It all began when I was 16 when I started blossoming as a person and had just started flowering. Anorexia takes away your ability to govern your own life and make your own decisions and replaces this with a crutch, a false refuge, somewhere to run away to. Anorexia separated me from my hopes and dreams. It made me passive and out of the world. It disconnected my logic and my heart. It was as it my life was happening to me and I had no say.”

The moment I stopped the video-tape, Brett exclaimed – “I want to get out of hospital. I want to find some way to show them that I am fighting Anorexia but they won’t believe me. I haven’t been in the grip of Anorexia since Sunday”. I couldn’t conceal my surprise.

“You’re getting free?” Brett reasserted himself – “I’ve been free but I don’t feel right eating in that place. I can’t show them how I am fighting it. I WANT TO FIGHT. It just came to me then that Anorexia wants me to believe it looks like that but it looks more like the Nurse there.” He then handed me his second drawing entitled ‘Nurse Hell – Wanted Dead or Alive’.

I asked again. “How are you seeing Anorexia now, Brett?” Brett replied, “Like the picture I drew of the Nurse. I figured that out on Sunday but didn’t tell anybody”. I happily concluded. “It’s good that you told us today”. But before I could proceed, Brett turned to the video-camera mounted on the wall. We had discussed previously that this tape would be sent with his family back to the hospital for them to view it. He shouted a plea. “Just let me home for three days and I will show you I can fight it”.

He then started to angrily and forcibly brush away what I first guessed was a pesky and irritating insect from around his left ear muttering to himself. “GET AWAY! GET AWAY!” He then wrapped both his arms around his head to block his ears.

I asked: “Are you getting angry with anorexia?” “Yah!” Balling his fist, he then seemed temporarily confused. I asked: “Where is IT?” With increasing frustration, he shouted back at me. “I can’t hit it. It is in my brain”. I tried to remain calm. “Okay, put it outside your brain. Drive it out”. “Tell it”, I shouted, “GO AWAY!” Brett held both his hands to his ears and screamed in a tortured manner. “Go away! I don’t want you anymore”. He screamed yet again but this time with the force of moral outrage. “GO AWAY. GO AWAY!” I echoed his outrage with cries of my own. “Go away! We don’t like you in Brett’s brain”. And then I urged him to persist. “Tell Anorexia – “I hate your guts! Leave me alone!” Brett continued to scream his protested refusal. “I don’t like you anymore!” It seemed that the relationship between Brett and Anorexia was now in question. I asked: “Is Anorexia gone a bit?” His voice dropped to its normal tone when he told me “Yah, it’s gone now”. I immediately forewarned him. “I’m glad you are calmer now. But it will try to come back so you might need to do this again sometime. Do you feel you are on your own again?”

He reiterated. “Yah, I’ve been on my own for three days”. Before he had completed his utterance, he once again brushed aside something unseen from the area of his left ear and once again addressed ‘it’. “Go away! I don’t want you anymore!’

I repeated Brett’s brushing away movements and asked, “When you shouted at Anorexia there and told it go get lost out of your brain, did it put much of a fight?” Although keeping his cool, he informed us, “It’s trying to get back into my ear now”. I advised him to “put something in your ear to block it”. He immediately jammed a handkerchief he had been using to staunch his tears into his left ear and held his right hand over his right ear with grim determination. I asked: “What is it trying to tell you?”

Brett announced it’s cessation and then addressed it with a vengeance. “You put me in hospital and took seven days of sunshine from my life. And my tennis championships because I am not playing in them now”. I joined him with an equal measure of vindictiveness. “Yah, it did! Anorexia, you are wrecking this boy’s life!” This inflamed Brett to add: “You have tried to take my life away from me, you stupid bitch!” I turned towards his parents and asked if they minded him swearing at Anorexia. “No, not at all, that’s fine” they replied. Brett went on to catalogue his injuries. “I was going to win the club championship and you have mucked it all up . . . You are trying to get back into my brain but I won’t let you in”.

I picked up Brett’s drawing of Anorexia, holding it aloft so everyone could see it and pointed to it. “How did you see Anorexia wasn’t a pretty face?” He scornfully retorted: “It’s not a pretty face” and demanded I hand it over to him. He held the Nurse Hell drawing aloft towards the video camera and exclaimed: ‘THIS IS NOT NURSE HELL. THAT IS ANOREXIA!” I then asked if he might write ‘Anorexia’ over his drawing so he could be assured of who was who and what was what. He dramatically and forcibly crossed out ‘Nurse Hell’ and relabelled his drawing ‘Anorexia’. He was now shouting at the top of voice. “That’s what Anorexia looks like. And I just drew over it even though it might have taken me a half hour to draw. And Anorexia wants me dead, not alive”. To make his point, he crossed out ‘alive’ with a vicious slash of his pen. “And she does say these things”. Offering a soft-spoken confirmation and reassurance, I added, “I know. . .I know she does say those things”. Rallying to a cry, Brett screamed again. “Her name is not Hell-in IT IS ANOREXIA!” “Can you understand why I have hated her for so long even before I met you?” I asked. He shouted his reply: “YES! But let me out of the hospital because I am alone there and when I am alone, she can creep back in. Let me think of other things; let me enjoy my life!”

Brett was discharged soon after the hospital staff viewed the tape and were reassured by the vigour of his Anti-Anorexia. However, during a sibling dispute a week after in which Brett was referred to as ‘an anorexic git’, anorexia renewed its hold over Brett’s heart and mind but this was to endure for only a short time until the fateful day that Brett ‘saw the light’.

From hereon in, I hand the story-telling over to Brett:

“I See The Light” is an autobiography of Brett, a twelve and a half year old student fighting Anorexia Nervosa in Northland Base Hospital. It was Brett’s second time with Anorexia Nervosa but this was his hardest fight. The story tells you mainly about Anorexia Nervosa and its ways and means of bringing people down. Brett wrote this book for two main reasons. One was to record his fight so he can look back upon it in the future and for personal use. The other was that Brett had been pulled down twice by Anorexia Nervosa and had felt the full pain the second time, and was determined that this was not going to happen again to Brett or any other child. This book was completed up to the last chapter, “Home Again” while Brett was still a patient in Northland Base Hospital.

** *

“Rain,rain,rain!” I yelled. I had been home from hospital for just under a week now and I was still slowly recovering from my “first” encounter with Anorexia.

This had been the first rainy day since I’d been back. I had not had dinner the night before due to chest pains so I was not in a very good mood anyway for what was about to take place.

I was so full of anger that I refused breakfast thus turning my anger inward. I cursed and swore at the rain, but the anger of not being able to exercise still remained. I turned over and flopped to the lino floor. I began doing vigorous press ups. This was my way of channelling the anger. Mum watched on in horror. The press ups became more vigorous through the day. I refused lunch and then dinner as my appetite decreased and anger increased which meant more press ups. I was now slipping quicker than ever.

This carried on through the next day: anger and press ups continued to increase and Their Force became Larger and Stronger. Then I was taken. It was around the dinner table. Joel, my brother, spilt some drink upon the dinner cloth. I sniggered. “Oh shuddup you anorexic Git!” he yelled. Something triggered, a spring broke. Now my anger had someone to unveil itself upon. It had an excuse. I rushed off to my room and slammed the door. CRASH!!! Now Anorexia began to take me, slowly but surely back down the same dark path. Then the next morning I was admitted to Northland Base Hospital, but this time it was different. I was confined to my room, “no fitness”, “no exercise”. I blindly slipped to my peril through not thinking or looking ahead…..

Over the next two days in hospital, Anorexia slowly stole my life away from my blind eyes and also started turning me against the people I loved.

First it began with my art and creativity. I was sitting in bed slowly sketching a picture of an old sailing ship and then suddenly I felt the urge to wreck it, but before I did this I quickly placed it in my folder.

After that incident I decided to write some letters to my family. At the time it was blind to me, but Anorexia was using the letters to turn my hate against them, e.g. this is a passage from the first letter: “Well, I’m just an Anorexic Git as my so-called loving brother Joel has convinced me”. That was exactly how it started. Anorexia also used my letters to cut off any will or urge I might have to fight it, and slowly led me to believe that I had no reason to live and placed the idea of death into my head. “All you want to do is die”, Anorexia told me. Anorexia did some physical stealing as well, e.g. I lost all my activeness and I found myself in bed resting a lot. I also would have to spend about two minutes rubbing my eyes in the morning before I could even see my hand in front of my face, but most of all I became amazingly weak.

Anorexia also turned me upon everyone I loved, including my family. But Anorexia picked on my brother Joel most of all. From the time Joel called me an “Anorexia Git” until the day I saw the light Anorexia tore my brother away from me to the extent that I was forced to believe that he had completely departed my life.

Anorexia carried on turning me against my loved ones. After Joel it went in this order: Female nurses, male nurses, Dr. Roger Tuck. At this time I wasn’t becoming scared but then Anorexia began to get very personal and that’s when I became scared.

Next she took Tony White, my therapist away from me; first Tony’s trust, then Tony. I feel that must have been a mighty triumph for Anorexia but if that was a triumph, what Anorexia did next was nearly worth a brilliant gold medal. Anorexia took David Epston and my youngest brother away from me. Anorexia was trying to get my Mum and Dad but this was one rock she didn’t crack….she slowly took me down lower and lower into hell and death row, her realm stealing more and more from me and slowly turning more and more people away from me! But she missed one vital and truly obvious possession of mine – the will to read. This was a main key in the lock Anorexia had upon me, but it had taken me far enough down into the darkness. Anorexia was at its greatest strength that afternoon….

I was lying upon my bed resting when in marched three nurses. One asked me if I wanted Nigel or Bob to put it down. ‘PUT WHAT DOWN” I demanded. “The drip”, they replied. I answered, “do I have to?” “YES!”. “Nigel then” I yelled. First they laid me back and two nurses leaned over me and pinned me to the bed. I yelled ‘LEAVE ME I WANT TO DIE’ but before I could finish Nigel loomed over me and plunged the smallish white tube down through my left nostril.

As the tube crashed down through my nose and slithered out and then down once more, this time down my throat, the pain and agony I went through in those next few moments was amazing. Finally when Nigel stopped plunging the tube down my throat, all I wanted to do was pull it out, but I was still pinned firmly to the bed. I yelled, “Let me die! Let me die!” for about five minutes then I lay silent; I was wounded. I lay down in my sleeping bag to rest.

As I lay there strung up to the drip feeding machine with tears in my eyes, I had time to think.

My first thoughts were still tightly fixed on death but as I thought about my family and loved ones it all started to come back to me! “If I die I’ll lose my family, my tennis, my art, adventure”. Then I thought of the books I had been reading, especially Gem of the First Water by Ron Phillips, and all the mystical wonderful adventures those people had experienced! “If I die I shall lose it all. I shall lose everything!”

Then I saw it. I saw Anorexia. She was Exposed, the evil witch. I took one look at her then she froze dropping all she had stolen from me across the floor. All she had turned upon me came back then. Anorexia crumbled into a black dust which drifted away. Then ‘I SAW THE LIGHT’ for the first time in 5 days. Quick as a flash I jumped out of bed: “I’m fighting again”, I yelled. The nurses were amazed but I explained it to them, I quickly thanked Nigel, Bob and Janice for putting in the drip. Then I started to crush Anorexia.

I started by writing A Menu – that is a real kick in the shins for Anorexia. I had just turned around at the cross-roads. “I had seen the light!”

I had discovered who my friends and enemies were, I had overcome my blindness and risen out of the quicksands of hate and denial. I was now thinking straight and in control, but now I must cleanse and reclaim myself…

Over the next few days I slowly got back all my possessions, creativity, art, life and everything else Anorexia had stolen from me.

I also began to eat once more but in very small amounts. I am still on the drip which isn’t a great feeling but I’m sure it’s keeping me alive at the moment. I have now conquered the greatest obstacle of all, I have reclaimed all my friends and family back but most of all I have my loving brother Joel back with me. I have total control over my mind and also have back my smile which Anorexia stole from me.

That night, I had the most wonderful dreams ever, of how I might write my experience up as a story book to help other people to fight Anorexia, and that very day I did. ** *

I began to feel hunger and eat again properly the day I got off the drip feeding machine. A week later I was discharged from hospital, after an admission lasting 17 days, 10 of which were on the drip machine. I arrived home to my family and friends on 24 March 1992. I was HOME AGAIN at last.

Around a year later, I was to meet Paula Parsonage, a counsellor working for Community Alcohol and Drugs Service, through a decidedly strange set of circumstances. I was contacted by Kathy Menzies, the Director of C.A.D.S., asking if I would provide 6 sessions of counselling for Paula. This was the agency’s protocol for any counsellor ‘losing’ a client. “Why me?” I asked. I obviously misheard as I thought Paula’s client had died of anorexia. I asked if I might contact Paula myself firstly to give her my condolences as well as make a time to meet. Kathy said that would be unwise as Carla hadn’t died yet; rather she had recently been declared ‘terminal’ at a meeting Paula attended along with Carla’s family and all professionals associated with Carla’s care. Paula, quite extraordinarily refused to withdraw her services, although all other professionals agreed to do so. I immediately asked Kathy if she would be willing for me to use the “posthumous sessions pre-thumously”. Kathy laughed, thought for a moment and agreed to this.

Paula, Carla and I met soon after. Carla was 38 and had had, according to her, 55 hospital admissions over the past 23 years ever since anorexia took over her life after she was sexually assaulted. She lamented how she had always, for as long as she could remember, wanted to be a nun and live a religious life. However, since this offence. anorexia had, in a manner of speaking, excommunicated her, forbidding her to enter a church, pray in private or even hang her cherished pictures of ‘Our Lady’ and ‘The Bleeding Heart’. I surmised that over the course of so many hospital admissions, she would have had her fill of being asked questions. She heartily agreed but probably was left wondering how we would fill our time. I proposed that we consult the archives and that I would read from them. Included in my readings were ‘I See The Light’ and Robyn’s unmasking of anorexia.

The following letter details our next meeting. 14.5.93

I would also like to tell you what the League has meant to me. For me, this work has been extraordinarily difficult on so many fronts. How many limbs have these families and I gone out on that if one broke – death would have been very likely. I cannot tell you how often in the solitariness of my office, I too would appeal to the League, embodied in its archives. I have lived for several years now with the comfort that Lee, Sarah, Brett, Bryce, Paula, Fran, Eva, Gloria, Jenny, Jo-anne and so many more are both behind me and beside me. Anti-anorexia has become my place too to stand and speak from for at times you can feel invisible – even though you’re not – but this is certainly worth entertaining when you work against evil.

Mary, aged 17, had pulled herself out of the quicksand of anorexia in 1997 and 1998 for the time being. It was painstaking for her parents, Warren and Sharon and myself. However, faced with her final secondary school examinations late last year, we all feared that every freedom she had reclaimed had been forfeited and she would perish. Warren, usually a strong contributor to any anti-anorexic matter at all, sat with his head bowed, tears running down his cheeks and pooling on to his shirt collar. Sharon, also a strong and thoughtful commentator, seemed frozen into stillness and glacial silence. It seemed as if Mary had come to say farewell. I found this unbearable and wrote to her from the very ‘heart’ of the archives.