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After losing her husband Tony to Parkinson’s disease 14 years ago, Mangawhai resident Karen Johnson has taken the heartache of caring for the love of her life as inspiration for Unscripted — a deeply personal memoir full of love, grief and ultimately hope.
Karen and Tony met as children in a farming community. They later became a couple, marrying in 1975 and starting a family together.
In 2005 Johnson and Tony moved to Mangawhai with the aim of building a youth camp. Unfortunately for the couple, those lifelong dreams were put on hold when Tony was diagnosed with Parkinson’s disease at the age of 51.
Johnson says Tony had an aggressive form of the disease, a progressive neurological condition that affects movement and can also affect sleep, mood and thinking. He died just seven years after his diagnosis, aged 58.
Karen says she has always had a love of journaling; she continued to document her life during Tony’s illness and used her writing during that time as the basis of Unscripted.
Last year, she went to a writers’ retreat in Tuscany where, after three years of writing, the book was brought to life.
“Although the book focuses on the seven years we lived with Parkinson’s and how I coped with it, it is very much a story of our life together, what our life was like and what Tony was like as a person before he became ill,” Johnson says.
During Tony’s illness, Johnson says she was searching for a book that would give a more personal insight into how others coped, but struggled to find anything, so she wrote the book she wished she had had at the time.
“Tony became someone that was not familiar to me. He had paranoia and delusional thinking, so I wanted to write to honour the man that he was before he got sick, but I also want to put a book in the hands of someone who is caring for someone who is unwell and the challenges that they may face.”
Johnson says that although parts of the book are upsetting and can be confronting, she has tried to infuse her writing with humour and hopes readers can find some comfort in her experience.
“Our deep love for each other, our commitment to family and our strong faith helped us get through the hard times. I hope this book inspires people who might be going through difficult things to know that that there is still hope.”
Johnson says writing the book has been a healing process for her and has ignited a passion to continue writing.
Unscripted is available for purchase in Mangawhai from Meant to Be and Mangawhai Books and Gifts, and online at copypress.co.nz
