When Erika Murray-Theron started writing about her life following the Parkinson’s diagnosis of her husband Tom, she couldn’t predict that capturing her thoughts on paper would be her way of coping. Yet writing became her solace and eventually a book titled Kom Ons Loop Weg (Protea Boekhuis), which she hopes might shed some light for others struggling with debilitating disease. She talks to DIANE DE BEER:
It says everything about author Erika Murray-Theron when she tells you with a twinkle in her eye: “In one year I turned 80, got married, had a knee replacement and launched this book.”
Published by Protea Boekhuis, the front cover also explains that this is her and her first husband’s journey with Parkinson’s disease.
It all started in 2001 when Erika’s husband Tom was diagnosed. Initially once they were fully immersed in the illness and coping with its progression, Erika started a file on her computer but it was simply meant for her eyes. As someone who had always kept a diary on her life (until her family with five children took over), she knew she needed somewhere she could gather her thoughts and make sense of all the changes they were confronted with on a daily basis.
From the beginning, the onslaught on what had been their life was quite overwhelming, but as one does in these circumstances, you deal and cope. When Tom’s mind was still unaffected, they could make decisions together but eventually, Erika really had to take charge and, as so often with his particular diagnosis, she had to handle everything with great care when dealing with Tom.
Part of Parkinson’s symptoms can be fears of abandonment, and reality for the couple soon became a very individual experience.
The book deals mostly with the last three years of Tom’s life, which because of the degeneration, were also the most difficult. For Erika it wasn’t just the decisions about where and when to move, how to physically manage their lives, but also to bear such constant and intimate knowledge of Tom’s decline.
Theirs had been a fulfilling marriage and what she was witnessing was the dismantling and slow disintegration of both the physical and intellectual beings of her life partner. And with that comes the loss, which is a slow and debilitating process for both, the one suffering and the carer.
This wasn’t a time to think, she had to do. But she is a writer and from as young as five, she would tell herself stories and end sentences with “she said!”, as though writing a story. “I don’t know where that came from,” explains Erika, and even though she started writing books at a relatively late stage, storytelling has always been a part of her being.
Writing is how she makes sense of things and, during Tom’s illness, it helped her make sense of her feelings and her understanding of what was happening.
She hates being viewed as a victim or as someone who wallows in misery, and given what she had to deal with, not languishing in those emotional places is tough. But with Tom the priority, she managed with the help of her children and friends to cope.
That’s where and why the book became important. Once she caught her breath following her husband’s death in 2014, she knew she had to revisit these last years of their life together – that as well as nurture the memories of happier and easier times.
She had been caught unawares by the deep loss she felt with Tom’s passing away, especially following the struggles of the last years. That also meant that she hadn’t yet mourned the loss even though it had been such a part of her life even before his death. “I knew I had to deal with all of that,” she explains. Now she had time to step back, return to her notes to gather her thoughts of what their life had been.
When she started thinking about writing a book, she was driven by the feeling that her experience could benefit others.
But this also meant more exposure, the one aspect of being an author that doesn’t appeal to Erika. “I am a very accessible person but I don’t like being out there,” is how she explains it.
But telling this story she believed she had to be truthful and honest about their lives, especially the last years that were so tough. It also meant that she had to discuss this opening up so publicly with her children.
They are a tightknit family, some more private than others, and this was her and Tom’s story and where she was going to concentrate. And even though the book is extraordinary and something Erika doesn’t regret, the publicity surrounding it has been difficult for her. “Many people only see my plight rather than the extraordinary journey,” she says.
What she has done with telling her story, one that no one really wishes on anyone, is to show the resilience of human beings. How we stand up and get going when life is unexpectedly tough. For her it was about finding the meaning and making sense of it as she was gathering her notes and her thoughts to finish the book.
She contacted the editor of her last book at Protea Publishers, Kristèl de Weerd, and gave her the notes which she had already sorted into some kind of order. Writing and the process is something Erika enjoys and especially the final reworking and editing. “I can sit for hours adjusting one paragraph,” she confesses.
That is why the book is such a revelation. When keeping notes, Erika is someone who has depth and detail in the palm of her hand. The title KOM ONS LOOP WEG (loosely translated as Let’s run away) comes from a moment in time when Tom said to her quite unexpectedly and lucidly: “I miss you … I hunger for you… Let’s run away…”
And still her story isn’t completed and if there are any tears to be shed, perhaps this happy note will do it.
Following Tom’s death, a close friend of theirs, Gideon, also lost his wife. He turned to Erika for some help with things he had to sort through – and, she says, she immediately knew that this friendship was going to develop into something different and deeper. Today she is taking a timeout from writing and the newly-weds are making the best of their time together.
For those of us looking on, it feels as if they were blessed with a special gift.