Good Reading : February 2005
goodreading 21 It took six traumatic months of research to start to understand burns. I trawled through the huge second-hand bookshop in Sydney’s student area and emerged with two heavy medical books on burns. I could barely cope with the graphic pictures.They were horrific. In some, the faces of people had become unrecognisable. I covered these photos with one hand as I read, so that I could cope. I wrote notes and read and re- read the text. Burns are complex, and I was not a doctor. I was scared, as doubts about my ability to understand the medical processes kept surfacing.That is when I started my visits. My first visit was to see Professor Wayne Morrison, director of the Bernard O’Brien Institute of Microsurgery at St Vincent’s Hospital, Melbourne. Professor Morrison explained the process of the surgery, the complexity of reconstruc- tion. He gave me answers to questions I did not have the experience to for- mulate. Later I visited Dr Hugh Martin, head of the Burn Unit at the Children’s Hospital in Westmead, Sydney. Dr Martin explained burns, grafts, pain control, scarring, and survival. Slowly I began to understand the trauma of a major burn and the huge and lengthy challenges facing burn survivors, their families, commu- nities and support teams. As Professor Morrison and Dr Martin spoke to me, my escape routes were closing. How could I avoid writing Butterflies? I spent many hours talking to social workers, physiotherapists, nutritionists and nurses committed to assimilating burn survivors into normal life and helping the families cope with the trauma and many years of operations that would follow. I investigated the Burn Unit at Westmead, with its routines of bandages, heat lamps, dressing and undressing of wounds, the creams, the pressure suits, and the proc- esses of healing.The commitment of the family to their burned child was revealing: the daily dressing, physiotherapy, and care. I saw social workers helping the victim, the parents and the siblings.There are often complex emotions to be dealt with, including guilt in parents over how their child came to be burnt, breakdown in family relationships, and resentment over the long and arduous support needed to help the victim. Sometimes there was sibling anger at becoming marginalised, and anger and fear in the victim over the disability and the journey involved in becoming independent again.The emo- tions left me traumatised at times. I discovered the Burn Support Foundation, where parents have created a community for their children and the families of burn victims.There are newsletters and socials.The burn camps sponsored by the New South Wales Fire Brigades were incredible: children in pressure suits and splints, with all their scars and restrictions, could play without the fear of being socially ostracised. When I finally felt that I understood the experience of burns – the medical facts and the social aspects, the burn vic- tim and survivor, the family’s perspective, the role of health workers and the com- munity; when the emotional experience of burns was internalised and melded into my own personal experience of growing up, being a mother, being part of a community, then I put away the research. And only then did I begin the year-long journey of writing Butterflies. I had a definite agenda. Butterflies would be medically accurate, but it would not be a medical book. It would be psychologically accurate in terms of child growth and development, but it would not be a didactic textbook. It would reflect the stories and journeys of the young people and families I had interviewed. It would reflect my own emotional journey. I wanted to write a story where disability is part of the fabric of life, but not life itself.The main char - acter, Katherine, would be burnt but would never be a one-dimensional stereo- type. Katherine would be complex like all human beings, with a family, a back- ground and a personality that reaches from the page into the lives of readers. Katherine’s life would show that disabil- ity does not separate burn survivors from the community, but unites them in the common bond of humanity. Butterflies would celebrate these young people and their families, acknowledge their journey and act as a powerful tool in the accept- ance of each other.When Butterflies was completed, Dr Hugh Martin made valu- able technical changes – after which he generously offered to endorse the book. I cried when I received his endorsement. ‘Every survivor has a story. Often the story is of interest, and even more often instructive. Butterflies is the story of a burn survivor, and is both inter- esting and instructive. It explores the complex areas of the emotional impact of a burn on the individual and family while giving insight into the world of hospitals, patients and doctors. It traces the development of the personality from insecurity and relative isolation to a healthier level of self-esteem that enables the individual to form bal- anced relationships with family and friends. It shows how the inner person can triumph over a preoccupation with surface scars and know that basic values of commitment, caring and trust are more important than the texture of the skin. Butterflies has relevance outside the narrow circle of burn survivors and their families. It shows the ebb and flow of emotions that affect us all, particularly in the transition between childhood and adulthood, and how parenting and family life make these bearable. Those of us who are involved in the world of burns know how survivors need help from time to time, but slowly develop a depth of character and an inner strength, which is rarely seen in others. Like tempering steel, the process of pass- ing through the fire helps make a person of exceptional quality. Butterflies captures these subtleties for the reader, and gives a stunning insight into a difficult topic.’ Dr Hugh Martin Head of the Bur n Unit, The Children’s Hospital, Westmead, Sydney Writing Butterflies was a journey of self-discovery; through Butterflies I faced unresolved issues, transforming them into self-knowledge. I hope my readers will also travel their own road in Butterflies and come out enriched. the writing life Butterflies was one of my toughest books to write. It deals with severe burns ... it was written as a powerful recognition of the journeys of survivors and their families.
December January 2005