Music at the Edge

The Music Therapy Experiences of a Musician with AIDS

Colin Lee, Colin Andrew Lee

• Publisher: Routledge
• Year: 2016
• eBook ISBN: 9781317397250
• Topic: Psychology
• Subtopic: History & Theory in Psychology
• Index: Psychology

Music at the Edge invites the reader to experience a complete music therapy journey through the words and music of the client, and the therapist's reflections. Francis, a musician living with AIDS, challenged Colin Andrew Lee, the music therapist, to help clarify his feelings about living and dying. The relationship that developed between them enabled Francis the opportunity to reconsider the meaning of his life and subsequent physical decline, within a musical context.

First published in 1996, Music at the Edge is a unique and compelling music therapy case study. In this new edition of the highly successful book, Colin retains the force of the original text through the lens of contemporary music therapy theory. This edition also includes more detailed narrative responses from the author and his role as a therapist and gay man. Central to the book are the audio examples from the sessions themselves. The improvisations Francis played and his insightful verbal explorations provide an extraordinary glimpse into the therapeutic process when working in palliative and end-of-life care.

This illuminating book offers therapists, musicians, related professionals and those working with, or facing, illness and death a unique glimpse into the transcendent powers of music. It is also relevant to anyone interested in the creative account of a pianist's discovery of life and death through music.

1

BACKGROUND

Francis sat at the piano, his head bowed in silence. A sense of expectancy permeated the air. It was as if he were waiting for the beginning of time itself. Sitting near on an adjacent chair, I could feel his calm expressed through deep breathing and inner sighs. The moment was suspended for us both. The quality of his silence was brimming with emotional focus. There was a feeling that this music had already been composed and that he was simply waiting to play that which had already been created. Similar to the anticipation before the performance of a great symphony, we were caught in the potential of musical beginnings. Eventually his hands moved slowly toward the keyboard and he began to play. Opening tones became small motives that in turn developed into melodies and themes. Harmonies and rhythms added to the richness and development of his solo musical design. His improvisation became a heroic tone poem that reflected his life and the challenges he faced living with AIDS. Through the 50-minute span of the music he was able to translate his deepest longing and fears. As the improvisation ended, so Francis again bowed his head. As it had begun, the session ended in silence.

This book describes an extraordinary flight in music therapy with Francis, a musician who lived with and died of AIDS. Through the contemplative qualities of music he found a sense of peace that had eluded him his whole life. The verbal and musical narratives presented describe the re-awakening of his creative musical spirit, which, through earlier circumstances, had been lost. In music he demonstrated great courage, this story being a testament of his musical journey towards death. The structure of the book is formed around his course of therapy, his music and his words transcribed session by session. In the context of the narration, I also describe my involvement in the therapy process: my searchings and reflections, and the professional and personal challenges of this astonishing experience of ‘therapy in music’. The musical excerpts that accompany the text come from recordings of the actual sessions and are included as audio files. This enables the reader to have the experience of sharing in the creative and expressive dynamics of Francis’s journey. With regard to the transcriptions of his words: apart from determining punctuation, and some slight editing in the interests of clarity, the words are as he spoke them. The immediacy of improvisation through speech, as well as music, is retained.

The original vision was to provide a description of a course of therapy that was essentially non-academic. This idea has been retained and expanded for the second edition. All theoretical constructs, apart from those presented in Chapters 2 and 11, appear naturally as the text unfolds. These two chapters provide a professional context that offers the reader the opportunity to consider Francis’s verbal and musical narratives within the boundaries of music therapy as a defined practice. However, whether layman, musician, healthcare professional or student, the reader should be able to understand Francis’s therapeutic journey with little or no previous knowledge of the field.

The motivation for writing this book came from two sources: first a promise. A promise made to Francis before he died that our work together would be documented and presented for publication. I remember clearly when the subject was first broached during the last days of his life. After he had planted the initial seed we immediately began to speculate on matters of language and style. My mind soared as our conversation became more and more enlivened by the possibilities we envisioned. At the same time, I began to feel a sense of uncertainty as I realised the significance of what he was entrusting to me. I apprehensively made a commitment to realise our vision; the content and format Francis entrusted in my hands. After his death I allowed myself time to consider how the structure of the book might unfold. I spent some months making notes and reflecting on our work. Listening back and transcribing his verbal dialogues from every session, I began to sketch the formal beginnings and structure of each chapter. I then began to notate certain critical passages of music, as well as choose the audio examples that would eventually highlight and balance the text. At times the experience of retracing the therapeutic process felt a heavy burden. However, I never regretted our pledge: the objective appraisal of our work demanded by the writing enabled me to explore and clarify many principles central to music therapy with people living with HIV and AIDS.

Second, I saw the opportunity for a description of music therapy in which the verbal and musical voices of client and therapist combine to express the essence of the process. Music therapists normally evaluate their work from their own theoretical frame of reference; the understanding gained comes from the therapist’s descriptions and interpretations. Inevitably, many clients, owing to the extent of their mental or physical dysfunctions, are unable to provide articulate verbal responses. This has always been a problem in assessing the effectiveness of music therapy. With the widening of music therapy practice into areas where clear verbal evaluations are forthcoming, it is essential that therapists learn to consider attentively what the client is saying. Advancements in technology have made high-quality audio and video recordings of sessions easily attainable. With the client’s permission, the music that has been therapeutic can itself be preserved for documentation, and through assessment and research disclose and demonstrate the inherent components and dynamics of the process.

In order to give a backdrop to the content of this book, I must first retrace some of my steps as a music therapist. The opportunity to work in the field of HIV and AIDS came when I gained the Research Fellowship in Music Therapy at City University, London in 1988. Until then I had worked with children and adults who had learning disabilities, at first in a special school, then later in a large hospital complex. Initiating and developing a new department within the hospital took time, dedication and commitment. I devoted many hours to meetings, putting forward arguments for music therapy both in the hospital and in the development of community care. To present the case clearly it was necessary to provide succinct presentations of my work to an often uninformed and sceptical management audience. After five years I had secured a department encompassing learning disabilities and mental health that employed three qualified music therapists and two assistants.

During my last year at the hospital I became increasingly interested in the potential role of music therapy for clients who were at the end of their lives. My curiosity stemmed from reading the small amount of literature available on music therapy in palliative care (Bailey 1983, 1984, 1985, Munro, 1978, 1984, 1988).¹ The hospital where I worked had a small unit for clients who were physically ill, known as the Hospital Ward, which was apart from the main community. Clients were referred for many reasons, from the common cold through to post-operative and end-of-life care. At first I had not thought to include this ward within my work schedule. Certainly, I had never heard of a client with a learning disability being referred to music therapy specifically because of a palliative condition. Reflecting on the literature, I could see no way of adapting the approaches described to the needs of my developmentally disabled clients. Neither I nor any of the music therapy team had undertaken music therapy with such very ill people. What little contact there had been had come through therapists visiting clients with whom they had worked, which was felt to be a humanistic extension of the relationship, rather than a time for formally scheduled sessions. We rarely continued music therapy in these circumstances for the simple reason that we mistakenly considered the clients to be too ill to respond.

After months of deliberation and self-questioning I set up work that provided the option of taking direct referrals from the Hospital Ward. This decision was made with considerable trepidation, for death and dying were on the periphery of my clinical experience. Although only a few clients in the hospital had died, the experiences had always left me with many unanswered questions. On consideration, I began to understand that I was blocking the intrinsic meaning of endings by denying their impact on the music therapy process: it would be essential for me to face this issue if I were to continue growing as a music therapist.

Many powerful therapeutic encounters occurred during the following months. Questions and doubts found their level as I allowed myself the vulnerability of working with the unknown. As the work developed, the Hospital Ward took more of my time physically and emotionally. My concern was now much less with the patient’s learning disabilities and more with the effects of their presenting illness and physical decline. Music therapy sessions were nearly always ward-based, requiring me to take a digital piano and selection of percussion instruments to the bedside. This new sphere of work involved an immediacy I had not encountered before. The therapeutic processes of working in the context of multiple disabilities seemed to gather momentum when a person was chronically sick or dying. Clients would often express what I felt to be intense mirrors of inner anguish. I sensed an increased confusion in their minds. They could neither understand nor articulate what was happening to them. In therapy there were periods of extended musical simplicity and silence that somehow looked beyond the boundaries I had so carefully built in my practice. Questions surfaced: what was I doing in this clinical context? How could my professional role to formulate aims and objectives relate to people in the last stages of life?

The sudden death of a long-term client acted as a catalyst in motivating me to approach our two local hospices with a view to offering music therapy to their patients. My initial contacts were uneasy as neither hospice felt music therapy to be a priority. Their medical staff could conceive of music as relaxation or diversion, but felt uncomfortable about introducing what they saw as the potentially explosive dynamics of improvisation in music therapy. They were worried that this form of expression would be too unsettling or intrusive when a person was very ill or dying. After many frustrating talks and meetings our negotiations broke down. The proposal for the Research Fellowship at City University was my final attempt to set up work in this area.

I chose to focus my research on people living with HIV and AIDS for various reasons. Practically I wanted to limit my proposal to one specific area of palliative care. HIV and AIDS was an issue of great public concern at the time and seemed the most natural area to choose. Apart from pragmatic considerations, other more personal motives soon arose. The pandemic of HIV and AIDS and the impact especially on the gay community felt huge and impenetrable. I remember watching television from San Francisco when the virus and the term ‘gay plague’ first became a reality. In that moment, as a gay man and therapist, I knew I would have a role to play in the unfolding of this disease. The reaction of society to the emergence of HIV and AIDS was both shocking and apocalyptic. As publicity gained momentum I remember being struck by the hysteria of scaremongering, and the effects this might have for a person living with the virus. At this time life expectancy was relatively short. Could music therapy help ameliorate the stress experienced living with HIV and AIDS? How could music therapy accompany the dying process? What effect might musical expression have on the progression of the virus itself? These questions felt more like hypotheses. They were wide ranging and pointed toward the potential connection between creativity in music and the personal dynamics of living with an acute terminal illness.

London Lighthouse

London Lighthouse, a centre facing the challenge of AIDS, was the first facility to offer me a placement for the research.² Lighthouse, Britain’s first major residential and support centre for people living with HIV and AIDS, was opened in 1988. The centre was committed to providing the best possible care so that people affected by AIDS could live – in all the senses this word embraces. Lighthouse felt genuine; it was the first organisation to welcome the idea of including the creative arts within its complementary therapies programme. I felt that the innovatory nature of Lighthouse’s history (Cantacuzino 1993, Spence 1996) supplemented my need for creative freedom as a music therapist. I began working there one day a week soon after its opening in January 1988. There was much to be learned, both in terms of music therapy practice and the evaluation that would need to be undertaken in the research. My work with clients for respite and terminal care took place on the ‘residential unit’, situated on the third floor of the building. The beautiful Ian McKellan hall, on the ground floor, was allotted to me for sessions with clients who were asymptomatic and who were referred through ‘day care’. My clinical work consisted of three individual sessions in the morning followed by a group and time on the residential unit in the afternoon. At the end of the day I received supervision from a member of the psychotherapy team. By the end of the first six months I had acquired, by donation,³ a grand piano and an extensive range of percussion instruments.

Working at London Lighthouse was an experience tinged with both anticipation and apprehension. Lighthouse at that time was a unique and visionary organisation, its central philosophy based on the unconditional acceptance of every human spirit. Together with this was the attitude that death and dying should be accepted as belonging to life. These values strongly affected my work as a music therapist. From the beginning I had to explore my own finiteness. Through supervision I began to address my own fears of death and dying. How would I deal with my life if I too were HIV positive? What would it mean to have a shortened life expectancy? The consequences of these questions and others greatly influenced my ensuing work. Without this professional and personal analysis it would not have been possible for me to work with clients’ needs and fears either musically or verbally. I had been working at Lighthouse for one year before I met Francis.

One reason for wanting to work within the field of HIV and AIDS was my abhorrence of the persecution of minority groups. At Lighthouse I could embrace my philosophy that every person was a unique presence regardless of past choices, and that music therapy was about acceptance and growth. I wanted to offer space in which people could explore their inner world without condition or pressure. One opportunity to do this came with a client, Ian, who wanted me to play the piano while he sang love songs about another man. He explained that he was unable to find anyone who was prepared to take on such an accompanying role. The request was simple and one I gladly undertook. I believe it allowed him the opportunity to express his true feelings of tenderness as a gay man. We worked together for six months exploring songs by George Gershwin and Cole Porter, as well as singing present-day ballads. For me this highlighted the need for music therapy to be totally open to the idiosyncratic needs of every person.

The sessions at Lighthouse were often vastly different from my expectations. Until now improvisation had formed the main core of my therapeutic practice. I believed that through improvisation the whole range of human experiences could be expressed. As a composer and therapist I had made the conscious decision to concentrate on improvisation as m...

Table of contents

• Cover
• Title Page
• Copyright Page
• Dedication
• Table of Contents
• List of figures
• List of audio extracts
• Foreword to first edition
• Foreword to second edition
• Acknowledgements for first edition
• Acknowledgements for second edition
• 1 Background
• 2 Improvisation in context
• 3 Creativity and chaos – assessment and sessions one to five
• 4 Written on the wind – sessions six to ten
• 5 This was a person, this was a flame – interlude
• 6 Everything fades – sessions eleven to eighteen
• 7 Searching for the light – sessions nineteen to twenty-six
• 8 And still through the pain I saw the rain – sessions twenty-seven to twenty-nine
• 9 Expressing the dream flow – sessions thirty to thirty-three
• 10 After therapy
• 11 Afterword
• References
• Index