An Unexpected Letter
Sometimes as writers when we write from the heart we find a whole new realm of possibilities in the response of our readers. Having thought deeply about the motivation and purpose of writing ‘The Disappearing Sister’ along the journey of its creation, I look back now and see so much more meaning in what I chose to write about than I had ever anticipated.
After I published ‘The Disappearing Sister’ I sent a copy to the doctor who had worked with our family. Soon after I received a hand written thank you card in the post. Our doctor had written two pages not only thanking us but openly expressing how the book had changed her. She said,
‘Elizabeth it is with deep respect and humility that I received “The Disappearing Sister”. Reading it brought me a whole range of emotions – sadness compassion, and perhaps a deeper understanding of you and your family and what all of you went through during your daughter’s illness.’
‘How wonderful to focus on the sibling who gets lost in the turmoil and yet is such an important part of the healing process.’
‘I believe this book will help make me a better doctor and respond to the whole family in a better way with any disease process, particularly in mental health.’
These comments came from a professional whose time and attention I’d come to rely on over the years of therapy and consultation. These were the words of someone whom I shad viewed as a guru, an expert, a pillar on which to lean. What I had suspected to be the case, but had not been sure, was that there is journey of discovery and understanding that the practitioner travels on with their patient. How marvellous that one so informed can take it upon themselves to be open to further learning and understanding. How this doctor might apply her new insights in the future is something to which I will probably never be privy yet to feel that my storytelling opened her up to new possibilities. If this is so then there are myriad possibilities for storytelling as a healer, as a way of enlightening and thus supporting those who work with families in the health and the community sector.
Storytelling as a Healing Tool
Richard C. Senelick, M.D is a case in point. Over his forty years in the health sector he has sought to raise the awareness of the need to educate and support disabled people and their families and to advocate respect and resource provision for this sector of the community.
Senelick outlines his theories on the healing power of stories citing the renowned series ‘Chicken Soup For The Soul’ as an example of how real stories about real people help others to cope with the stress and trauma in their lives. He talks about the storytelling as an effective tool and cites Stewart Gandalf’s article where the following indicators are listed of why this is so:
• Are mentally richer than simple instructions
• Engage and involve the patient
• Trigger empathy
• Are more likely to be remembered and retold
• Promote a two-way conversation
• Transfer knowledge
These factors all help to engage the listener in new ways of thinking. This in turn helps to take away the stigma, the fear and the ignorance that block the pathway to healing. Not only does it help with the treatment of the individual but it will help those who are supporting loved ones to process what they are dealing with so that they can cope and work through their feelings. Whilst I never intended to write ‘The Disappearing Sister’ to heal myself yet I admit it was a cathartic experience. It has given me a deeper understanding and a way of reflecting on what has happened within my family and to my daughters. For this I am grateful.
Where to now?
With its success in developing new ways of thinking, series like ‘Chicken Soup for the Soul’ have grown into new structures, combining the latest medical advice with real stories from real people. It is inspiring to learn that the ‘Chicken Soup’ team are in partnership with Harvard Health Publications to produce a new series to help improve readers’ health. I too am hoping to develop my work into new areas. I look to those who have gone through their own experiences of loss, illness or trauma and by working with them aim to develop a series that not only empowers and helps people heal but does this from the perspective of the very young.
By examining the world from a child’s perspective, adults working with and caring for children going through traumatic experiences may reflect on the context that the child is living within and thus work on developing effective strategies to best support the child and help them to develop the resilience needed to cope in their daily lives.
“Oranges Are Not The Only Fruit”
The Question of the Broken Record…
For parents of those suffering eating disorders, the sense of being a broken record when it comes to food is an overwhelming one. How is it possible that the teenager that is so responsible and wonderful in every other facet of their life can be making life so difficult for themselves and all around them?
Why do the oranges, the celery the cucumbers and myriad of other poor food choices become the sticking point, your nemesis? You shudder recalling the particular food or (diet) brand of product that is the choice that has both you and your young person screaming and at breaking point. Where does negotiation stop and hard rules kick in?
There is the approach – usually taken on the “down slide” into an eating disorder where the family try to accommodate for their young person’s changing taste and food habits/choices. After all it’s “normal” for children to wish to experiment and try new things; to develop their own tastes… or is it?
Years ago there would have been little choice for the family sitting down to a shared meal, what was packed for lunch was your food choice for the day and there was not the range of prepared “to go choices” to decided between on the way to school or work. Yet there were still eating disorders, silently and cruelly working themselves through households, claiming lives, destroying families.
The lack of discussion in previous times has meant that there exists a culture of silence around the unsavoury topic of ED. It is only now as those brave enough to come and share their experiences, their family’s stories and their own strategies that a fuller picture is being gained and a better understanding of how to help is being established.
The “tough-line/no discussion” approach often taken once the reality that there is an ED illness is also a tricky one. A rational and calm delivery of the “hard-line” is easier said than done. How many times can one be expected to repeat the mantra ” you need to finish your dinner” or “Oranges are not the only fruit, you need to eat something else”?
The answer is more often and for far longer than you would ever imagine. The conversations that scare us, the foods that trigger revulsion for the association they have with the calorie restrictions our children may have taken on are not going away any time soon. A person’s recovery from an eating disorder takes a long time, a very long time. You will have to steel yourself for being that broken record of a clear message of support and no nonsense for years and united support from family and close friends is vital to help you carry on caring. This means being brave enough to talk and to lean of the support networks you have to be able to keep being the broken record when eating disorder behaviours are trying to control your child.
What do you do when someone in you care about is hurting, when their behaviour is making it worse? How can you help them if you are the youngest and no one is listening? These are tough questions to ask and tougher when you are living through the trauma of a loved one suffering an eating disorder illness. When our family found ourselves dealing with these issues we discovered that there was little in the way of literature to help us tackle the distressing topic with our younger daughter. As a result, I came up with the concept of a children’s picture book aimed at empowering and educating the very young about this long-term illness and its impact on family life.
Finding the Right Image
Finding the right illustrator to create the right sort of images was a crucial factor and the choice of second year Sydney University Arts student; Johanna Roberts; was no mere coincidence. Johanna was not only a top HSC Art student at the time but was my ill daughter’s best friend. Having an insight and a personal experience of how far-reaching the effects of eating disorders were gave Johanna a deeper understanding of the situation when designing the images to fit the manuscript. Eating disorders are often misunderstood illnesses. People suffering are not choosing to live a certain lifestyle. They are very ill and need long-term support and care. This has major impacts on normal family life.
So how can such a picture book be of value? In the mental health area in general there are continued calls for discussion, forums and opportunities for carers, sufferers and professionals to share and work together. You only need to be on social media platforms such as “Twitter” to see the call to action and the cries for help. We need to use our powers of communication to get the message out there so more people understand what we are dealing with and how we can best help support.
Feedback is Vital
The thought of review and feedback is terrifying and yet is so crucial to the whole process. I will deal with this topic in detail another time but suffice to say the thought of one’s time, energy, creation and purpose being the subject of criticism is quite daunting. Never-the-less it is vital to do a reality check to see if you’ve hit the mark and gauged things correctly. Tentatively putting some raw copies out into various sectors gave me the chance to access some feedback. It was so useful and in fact a source of encouragement. People were very constructive in the way they broached the comments they wanted to make. Positive reviews of the book have been validation of the choice to broach this highly sensitive topic. Tony Smythe of Eastside Radio says; “As a dad of a daughter it really frightens me … thank you for sharing and writing this book.” As well as this notion of education, the sense that someone is getting their “side of the story” out there is a moving one. I have had heart-wrenching feedback from many adult readers who tell me that they relate to the sibling bond and the secrecy surrounding the illness. There is a tremendous sense of relief, gratitude and emotional outpouring in response. Feedback is “worth it”.
The Value of a Project
Writing “The Disappearing Sister” has been an unintentional cathartic journey but getting the message out there in order to help others is the key purpose of the book. If I can help even just one family then this has been worth the effort. I am now seeking to promote the message of hope and education in schools and related health services. The book will be the subject of a launch to be held in early August. For further information please see links below:
Find “The Disappearing Sister” by Elizabeth Cummings at:
The Butterfly Foundation:
National Eating Disorders Collaboration
Eating disorder illness is a topic that has traditionally come with a stigma of poor lifestyle choices and association with the glamour of celebrity circuits. However the truth is much less glamorous with the total social and economic impact being substantial. Eating disorders rank 12th in mental health hospitalisation and are the second highest costs next to bypass surgery being recently estimated to be at around 913,986 * costing the community in terms of social and economic impact in excess of $69.7 billion.
*Deloitte Access Economics, from “Paying the Price: economic and social impact of eating disorders “ report.
The report also estimated that the mortality rates are almost twice as high for people with eating disorders than in the general population – with up to 1,828 deaths from eating disorders in 2012 (515 males and 1,313 females. “Paying the Price: economic and social impact of eating disorders report”. (Extract taken from the Butterfly Foundation website)
Learning I Was Not Alone – Reading Others’ Stories
I have been grateful for the care and support my friends and family over the years and particularly as those tough times. During these times there was a great sense of being alone and isolated and only with the continual support from so many did we made it through as a family. Talking, sharing and being in touch with everyone really helped us cope as did reading the journeys of others. Reading helped us better understand what we were going through and also made us aware that we were not alone.
One of the most useful resources was “Brave Girl Eating” by Harriet Brown a parent’s account of her daughter’s illness. I can definitely recommend her works as balanced and honest accounts full of useful advice and information. Therefore I am very excited that Harriet Smith journalist and authors of several books (see http://www.amazon.com/Harriet-Brown/e/B001IXM9J8) including “Brave Girl Eating” has agreed to take a look at my book. It will be a chance for both of us to share and to reaffirm that we are and indeed were not alone.
Brave Girl Brave Author
In “Brave Girl Eating” Harriet talks frankly about her own family’s experience; from the onset of her daughter’s illness right through to the recovery stage. At times it is not easy reading, not because it was badly written but because the honest and detailed accounts were so easy for us to identify with in our own experiences at the time. Harriet managed to strike a great balance of keeping it real and yet full of the emotion that is so stirred up when caring for a sick loved one.
Being able to read of her experience and other accounts helped to empower my family and I to keep going when things were tough. At times the thought of carrying on was too much to bear and we could not see how life would ever be “normal” again. The constant struggle with the eating disorder and the sheer exhaustion physically and mentally of the 24 hour care required meant that we often could not see things rationally ourselves.
Losing Hope – Looking For Answers
I distinctly remember a friend trying to reassure me that things would get better and that there were improvements and the overwhelming sense of despair and doubt I was feeling at that time. I often did not believe her and at times would get very upset to hear her tell me things would improve. This was not because I wanted my daughter to stay unwell – it was because I had begun to lose hope. The road was so long and so hard and I was so close to it all I could not see an end to it. Again and again I would dip back into Harriet’s book and other reading material to try to understand and to try to find the strength to keep going. When would it ever end and was there any hope at all?
True Friends Stay Strong
The number of times I would go over the situation, the difficult episodes and the medical details with friends – over coffee, during a run or walk, on the phone, at the school gates. I cannot imagine how hard it was for them to listen and to feel so unable to help. Yet the very fact that they stuck by me, whether they really understood what was going on or what the illness did was support in itself. It was what mattered. They stayed by me, not judging, listening and trying to understand what was going on and simply just being there.
Knowing that they were there was a huge boost. Being able to find new connections through getting to know other families who were going through the same trauma whose stories were retold in the books meant so much. It was hard for them, hard for us and above all so very hard for our daughter.
Learning that I wasn’t alone as a parent, my daughter learning she wasn’t alone as an anorexia sufferer was an important part of the road to recovery. We were blessed with these support networks and I only hope that others in the same situation may be too. As for my friends, my family, and those who were brave enough to share their own stories; my hope is that they may know how much their support meant and how they were part of my daughter’s journey back to health.
Sharing The Truth
I went to see Alan Cumming speak the other night at the Joan Sutherland Theatre in the Opera as part of the Sydney Writers’ Festival. Having grown up in Glasgow and seen him on the stage and on UK TV over the years I was looking forward to a night of comedy and satire. What I was not prepared for was the stripped down, open and honest admissions and sharing throughout the course of the event. Alan described (sometimes in heartbreaking detail) the abuse he suffered as a child. He talked of his pain in frank tones and he explored aspects of his journey to empowerment and emotional strength with the interviewer in front of a packed house.
The need To Share Truths And The Need To Hide Truths
I was so taken with this openness and this need to share and felt that it echoed some of the sentiments I have gone through when working on my book “The Disappearing Sister”. It made me think about the need we have to share to analyse, to talk through even the most upsetting events in our lives. That said it also struck me how true Alan’s comments were when he spoke about how he and his brother would end up covering for their father when he had been abusive – and that this type of behaviour is so typical of those in such situations.
This strange dichotomy in our psyche – the need to share truths and the need to hide truths – often based on how we feel we will be perceived and judged is a dangerous one. Over-sharing can disempower us from “moving-on”, can alienate us from others who can not understand or who are threatened by the information we share. The hiding of the difficult and traumatic events in our lives also inhibits closure, it gives nobody the chance to help and in the case of abusive relationships it gives the abuser power to continue the cycle of abuse.
The Risk Consequence Of Sharing
It is no light decision to share so openly. If someone shares intimate and personal information they lay themselves open to comment. It is a frightening prospect to have one’s very trauma the subject of public discussion. The possibility that criticism and blame may come back is a very real fear people have when contemplating sharing. However what Alan Cumming described was an amazing validation, a sense of support and care as a result of his reveal. In the same way I have found that by discussing and being open about my own situation as a parent of an ill child allowed others to get involved and become part of the healing process. Yes there were those who simply couldn’t grasp the issue, who countered my worries with “She’ll be fine” “Don’t’ worry” and all the other platitudes that were well meant yet unhelpful. Yes there were those who felt my own lifestyle of exercise and my interest in health were linked to my daughter’s eating disorder (if only it were that simple!!) However those voices were the minority and hand-on-heart I would not have done it differently – talking about the problem WAS and still IS part of the healing.
Saying “No To Shame”
So I applaud the courageous survivors like Alan Cumming – whatever their trauma may have been that they chose to share, choose to talk and “Say no to (the) shame” of the situation in which they find themselves. In listening to him share with us as an audience I sat there and hoped that his journey to peace, understanding and healing from the terrible childhood he endured was one that simply by listening even a stranger like each of us in the audience could be part of that process.
© Elizabeth Mary Cummings 2015