Hope, Hype and Reality - Journeys with MND

31 May 2012
Hope, Hype and Reality panelists at Indestructible screening

It was an evening of emotion and debate when over 100 people attended the unique Hope, Hype and Reality - Journeys with MND event in Sydney during MND Week.

Hosted by MND Australia, in conjunction with Stem Cells Australia and the Centre for Values, Ethics and the Law in Medicine at Sydney University, the event included a screening of the award winning documentary Indestructible, about US filmmaker Ben Byer’s very personal journey with MND. Following his diagnosis, Ben starts to document his life. What begins as a series of video diaries grows into a documentary tracking Ben's search for answers and a possible cure. From stem cells to herbal remedies, Ben captures his and other's journeys as they search for a cure that is not yet there.

Following the film, an expert panel discussed the extraordinary emotional and physical journeys taken by people with MND. In particular, attention focused on the opportunities provided by stem cell research, as well as the ‘hype’ and debate that surrounds the issue. 

Panelists included:
Paul Brock – Vice Patron of the Motor Neurone Disease Association of NSW
Miles Little – Founding Director, Centre for Values, Ethics and the Law in Medicine, University of Sydney 
Frank Brennan – Palliative Care Specialist
Megan Munsie – Director, Education, Ethics, Law and Community Awareness Unit, Stem Cells Australia
Chris Zaslawski – Director, College of Traditional Chinese Medicine, University of Technology, Sydney
Ian Kerridge – Director, Centre for Values, Ethics and the Law in Medicine, University of Sydney - chaired the panel discussion and Carol Birks - National Director, MND Australia - provided the welcoming and closing addresses.

The discussion session commenced with Paul Brock, who has been living with MND for over 15 years, providing us with his moving response to the film (an extract from his speech is provided below).

Thank you to those who attended the event and shared their stories. Thank you also to Rebeccah Rush and the Byer family for their generous support in allowing us to screen the documentary.

For more information visit MND Australia.

Paul Brock kindly provided us with the following extract of his response to the film:

Like most human responses to experience my reactions to the film are mixed. Sorrow, admiration, empathy, anger, and – in a curious way – affirmation.

It is a desperately sad
 film. No cheery, sunny, ‘spinning’ can hide the fact that this is a desperately sad film. There is no magical transformation of the sadness into restorative joy. There is no achievement of some kind of transformatory fulfilment, or stoic comfort, or redemption through pain. Inevitably the film challenges us to think about, and reflect over the inevitable ethical decisions associated with, such issues as palliative care, and euthanasia.

I have huge admiration for Ben. He never gives up. He confronts virtually every new challenge with a smile or his engaging sense of humour, or through the comfort of his relationship with his wonderfully supportive and admirable sister, Rebeccah Rush; his splendid brother; his young son; and his friends. Ben has such enormous resilience and determination.

I empathise profoundly with Ben. The physical wreckage of both our bodies is both similar and dissimilar. Like Ben, my arms and legs have withered – in my case they are now useless. Indeed, apart from being able to think and speak, I am now virtually paralysed. Like Ben, years ago I would stand up with my then one remaining partially useful left arm and pull and pull and pull and pull the bottom of my T-shirt at the back trying desperately, independently, to ever so slowly slide the T-shirt over my head. ................

But Ben and my situations are also profoundly dissimilar. My physical degeneration has been over a much longer period of time. Furthermore, my wife Jackie has stood by me in what can only be called heroic, loving fidelity as she has watched her husband – who 17 years ago was as fit as a fiddle, vibrant, at the very peak of his life – progressively disintegrate physically. ................

I also reacted to the film with anger. Ben’s film centres on his unrelenting search for a cure. It is a bloody disgrace that 143 years after the great French neurologist, Jean Charcot, first identified Motor Neurone Disease in the scientific literature, scientists still do not understand what caused me to acquire MND; they still do not understand how to significantly slow down its progression; and they still do not have a cure.............

While I am aware of some notable exceptions in the scientific research community – especially in Australia - I often wonder whether all of those whose research in the field of neuro-degenerative diseases wins them academic acclaim in peer reviewed journals, are fired with the same sense of urgency that drives us who have MND.

I constantly recall what the late great Christopher Reeve said to me in 2003. He told me that whenever he met with researchers and others with the power to ameliorate and eventually cure the currently incurable spinal cord paralysis and neurodegenerative diseases like MND, he would confront them with the following words: “our houses are already on fire, and we need you to put them out, now”. ..........

But, despite everything, the film leaves me with a sense of affirmation. Not exactly hope for myself. I think I will be dead before any cure will be found for this mongrel disease - but I do have hope for the next generation.

At the end of his very powerful and very moving poem “1st  September, 1939”, after giving voice to his despair at the outbreak of what he saw would become the Second World War, the great Anglo-American poet W.H. Auden wrote the following.

Defenseless under the night
Our world in stupor lies;
Yet, dotted everywhere,
Ironic points of light

Flash out wherever the Just
Exchange their messages:
May I, composed like them
Of Eros and of dust,
Beleaguered by the same
Negation and despair,
Show an affirming flame.

In my own efforts to draw attention to the plight of those of us afflicted with MND and our families, friends, and colleagues I have attempted to be one of those ironic points of light. I have always tried to show an “affirming flame” to scientists, politicians, philanthropists, clinicians and all those with some form of power to make a difference as far as understanding the causes, finding ways of ameliorating the effects, and ultimately discovering a cure for MND is concerned.

And, of course, I am not the only one – not by a long shot!