Motor Neurone Disease (MND), a progressive neurological disease, is also known as Amyotrophic Lateral Sclerosis (ALS) and as Lou Gehrig’s disease.Peter Anderson is one of the approximately 1500 Australians affected by this disease and his wife Leanne and daughter Eliza are two of the thousands of family members who live with its impact.
‘I can’t begin to express how difficult it is to lose one’s ability to communicate.’
In 2001, when Peter Anderson was aged 36 and his daughter Eliza was 12 months old, he was diagnosed with MND.Peter and Leanne were told that the disease would probably kill him within two to three years.
Eleven years after that news, this book was launched.The fact that Peter is still alive is due in part to the fact that he has a variant of the disease which has progressed more slowly.From reading the book, it also seems highly likely that the positive attitude that Peter, Leanne and Eliza have had towards his disease has also helped immensely.
‘I have not given up on life, just grasped the reality of my present.’
‘Silent Body, Vibrant Mind’ is Peter Anderson’s account of both living with and fighting against MND.He writes (thanks to some wonderful enabling technology) of still teaching for two years after his diagnosis.Of the difficulties of writing when his condition restricted him to writing around 100 words during a five hour session, with his arms supported by braces and his fingers splinted.Of communicating:
‘I haven’t uttered a word in nearly six years. I haven’t written in four.’
In one of her contributions to the book, Leanne Anderson observes that:
‘For sufferers of MND, the actions of walking, talking and feeding are covertly stolen, one after the other.’
It seems that just as the MND sufferer becomes used to the loss of one function, and adjusts, another function is lost and the adjustment process must begin again.A cruel disease, which progressively reduces the sufferer to living ‘between the ears’.
And yet, the message in this book is about fighting the battles that need to be fought, not succumbing to the disease.Peter Anderson and his family have not lived the lives they envisaged, prior to his diagnosis in 2001, and their lives are full of challenges.Peter and his family know that his story will inevitably have an unhappy ending.But, in the meantime, they are living.
This is a courageous story: somehow it introduces hope, humour and inspiration in a narrative about a dreadful disease.It’s a story for Eliza of a father she never knew before his diagnosis.It’s a narrative - for the rest of us – about dealing with the multiple challenges of adversity.
‘The story isn’t in the disease, but in our triumph over it.I am sure there are thousands of people like us bravely fighting their own battles in their own way, and surely that’s a story worth telling.’
I was simultaneously saddened and inspired by Peter Anderson’s story.He has accepted his fate but fights courageously against every restriction each loss of function imposes.He and his family are realistic but not defeatist, and very courageous.
eBook Silent Body, Vibrant Mind