Chosen for September 2009 People’s Book Prize Collection for Non-Fiction
Tracing the life of the author’s father, this passionate, vivid memoir follows him through his childhood in the west of England, his successful 25-year career in the Indian Army prior to the country’s independence in 1947, and his final years in Devonshire, where he raised a family while the symptoms of Huntington’s disease gradually set in.
Born of a family of impoverished Cornish fishermen, he and his six sisters cared for their dying mother after losing their father at the start of the First World War, before Huntington’s disease reared itself in their lives and led to the early death of three of the siblings.
An absorbing, tense story of an emerging family crisis, this is an inspiring narrative showing that, through courage and faith in the face of great adversity, peace can be found.
William Symons was born in Newlyn in 1878. Following family tradition he became a fisherman and a member of the Royal Naval Volunteer Reserve. In 1914, following some early action at sea in the First World War, he died at the age of 36 yrs, leaving a widow and seven children, a boy and six girls. Unknown to him, and to his family, he left another legacy. In his body he carried a faulty gene, which, if inherited, could lead to Huntington’s chorea, a disease that normally becomes apparent in middle age. William died before symptoms appeared but the disease, known at the time as St Vitus Dance, was to claim the lives of a number of his descendants.
This book chronicles the life of his eldest child, and only son, William John, who was 12 years old at the time of his father’s death. There was a small naval pension and William earned what pennies he could in his spare time until he left school the following year aged 13 years and went to work, initially for Dick Bath, the coal merchant. Somehow the family managed to stay together even after the death of his mother, Florence Louisa, from tuberculosis in 1921. They attended St. Peter’s Church, where the vicar, Mr Phelps, knew the family well and gave them his support.
In 1919 William (always known as ‘Jack’ in the family) signed on as a soldier in the Duke of Cornwall’s Light Infantry and thus started a lifetime career in the Army and, from 1922, a long period of service in India. Mr Phelps helped him to weigh everything up and arrive at the decision to make this move. And so the story unfolds’.
Eventually, at the age of 70 years, chorea would claim his life, but it was a life that saw a lot of happiness. Not least the birth of his two sons. The elder of these, John Symons, is the writer of this book.
John Symons spent the first two years of his life in India and the next sixteen in Cornwall and Devonshire. He was educated at the universities of Oxford, Cambridge and London. He has worked for many years as an executive and life coach, and as an adjudicator in management and staff disputes. He lives in East Sussex.
‘This highly unusual book tells the story of an ordinary Cornish family affected over generations by an appalling genetic disease, and by the nightmare of not knowing who it will strike next. Yet there is a kind of triumph amid the suffering. The sensitive writing on a subject that could hardly be more serious makes for an unforgettable read.’
People’s Book Prize
‘The quiet courage of a family in dire adversity could not be better demonstrated – John Symons describes the tragedies that struck at the heart of a poor but devoted Cornish family. Humanity and the valour of the human spirit shine from every page.’
‘This beautifully written autobiography is much more than a description of the effects of Huntingdon’s disease. It is the compelling story of a Cornish family and its journey through a century of change. However, while Huntingdon’s disease threads its way through the book, it does not dominate what is essentially a family story.’
‘An ultimately uplifting account, the book is a deeply personal quest for information to help piece together a more comprehensive picture of a beloved parent long after their demise.’
‘Despite the underlying tragedy this is an uplifting book and an absorbing read, It is beautifully written.’
Margaret Perry in Cross Keys
‘Huntington’s is a disease of families as well as those who die of it … a beautiful memoir to a man devoted to his family.’
Western Morning News
‘Full of humanity and the valour of the human spirit, telling a tragic story with no self-pity – you feel that you are there and connect the story with the experience of loss in your own life.’
Prof. Heather Skirton, NHS consultant
‘The writer is a consummate artist in style, with a poet’s eye for detail. The story is exceptionally vivid – expressing deep faith and perception of the meaning of life, moving to tears, and searching.’
C.F.D. Moule, Professor Emeritus, Theology, Cambridge
‘This book drew me in completely. It is a very moving narration of the course of a family’s life, menaced but not cowed by a truly terrifying hereditary illness. This is a unique kind of writing, with particular appeal to teenage readers who want to get an idea of a way of life that is past, as well as to those who can recall those times. Reading it was an experience that I was very reluctant to let go of, and I was bereft when I finished it. The writer has a very special gift and I hope he is writing another book.’
R. C. Chaplin “ros” (Braishfield, Hampshire), Amazon.co.uk
‘I am from a family living with, and dying from, Huntington’s disease. I know all about the suffering, fear, anguish and desolation HD can cause. … I did think that it might be too painful to read. Yet what I found was a book which, while bringing back painful memories, was a moving tale of dignity, courage and, ultimately, hope .. This is not just a book for HD families to read – it is a book for everyone, of every age and of every background.’
From a reader review
‘I was awake far into the night simply unable to put this charming, uplifting family tale down. Rather than being haunted by the tragic Huntingdon’s disease lottery that hangs over the Symons family I was instead left with a wonderful sense of love and caring, an appreciation of simple pleasures and an insight into delight in family commitment and responsibility rarely represented so well. As well as an intensely personal family history, this book offers a fascinating piece of social history stretching from the poverty and hardship in Cornish fishing communities to studying at Oxford via the British experience in India. The warmth and humour in this book made me smile – it offers a moment of peace in a busy world as it chronicles ordinary people living their lives.‘
Elizabeth Silvey (London UK), Amazon.co.uk
‘In its own way, a spiritual classic, covering ground I imagine never covered before.’
Dr Giles Mercer, Catholic layman and scholar, Knight of St Gregory
‘Utterly compelling. A portrayal of how this cruel disease affects a family and the courage of their response; deeply moving and profound in its sensitivity, placing the story, at its end, in the wider theological context of how to make sense of human suffering.’
Rachel Brookes, Nursing Sister, who has cared for Huntington’s disease patients
Despite the underlying tragedy this is an uplifting book and an absorbing read, It is beautifully written, on one level vividly portraying Army life in India between the wars and at home in West Cornwall, and on another exploring the meaning of suffering. I read it from beginning to end, not skipping anything as sometimes happens. The book was, to quote from a comment on the cover, totally absorbing.‘