We caught up with Linda Boulton, who is also a University of Newcastle Creative Writing PhD candidate and is appearing at the Newcastle Writers Festival this weekend.
Linda is the primary caregiver for her husband who suffers from Parkinson’s disease and is writing a memoir about their shared experience with his illness, with a particular focus on stories written from the carer’s perspective.
Tell us about your background, including what drew you into your area of research?
I was born in Newcastle, the youngest child of Dutch immigrants. I opened my own dancing school when I was seventeen and taught ballet for thirty-five years. I met my husband, Steve, through our shared passion for dance. Our dancing partnership extended into a life partnership and we have been married for almost 34 years.
I began studies as a mature-age student with the Open Foundation course at Newcastle University in 1999, followed by a Bachelor of Arts degree and Honours. After Steve was diagnosed with Parkinson’s disease at the age of 46, I began reading personal stories about illness to find out how other families coped with this type of life-changing diagnosis.
My research interest lies in narratives about illness – specifically carer memoirs – with a particular focus on the literary techniques authors use to convey the illness experience. I began writing my own carer memoir in 2011.
What are you passionate about? How can others in the community get involved?
Ensuring Steve has his needs met as his condition progresses, and being the voice for other patients and their caregivers. Carers perform a vital role in our society – they work 24/7 often neglecting their own needs in the process. Friends and the wider community can relieve carer burden by offering practical support such as giving carers a break or assisting with home maintenance. More importantly, emotional support in the form of phone calls, visits and staying in touch can ease carer stress and help reduce isolation.
Also, raising awareness about the particular issues facing younger patients afflicted with the early onset of age-related neurological disorders such as Parkinson’s and dementia. Better understanding of these conditions can only enhance quality of life for patients and their families.
Has what you’re researching changed your point of view or reaffirmed something you already knew?
My research has confirmed that autobiographical stories about illness are a valid literary form and are a valuable resource for patients, carers, medical professionals and the wider community.The themes in illness memoirs are universal: suffering, pain, grief, loss, courage, resilience, love and hope. Yet each story is also unique and individual. These narratives have the capacity to touch people because they tap into the dramas and celebrations of everyday life and validate these experiences.
Do you draw on any people or resources for inspiration?
The Young Widow’s Book of Home Improvement by Virginia Lloyd first inspired me to write my own memoir. Other significant memoirs relating to my area of study: Lucky Man by Michael J. Fox, Learning to Breathe by Linda Neil, The Year of Magical Thinking by Joan Didion, Iris by John Bayley, A Three Dog Life by Abigail Thomas.
What’s been the most unexpected aspect of your work so far?
Initially, I feared that reliving difficult and distressing times would negatively affect the writing experience. Instead, I have found that writing creatively is a positive process that validates and highlights this significant time in my life. I’ve also been surprised and heartened by the positive feedback I’ve received from family, friends, healthcare professionals and academics about my project.
What do you hope will be achieved by what you are doing and what did you achieve or realise personally?
I hope my story will offer support and solace to other patients, carers and their families. I also hope it will provide some insight into what it means to live with serious illness. I am presenting the human face of illness – a patient is always more than just a set of symptoms. On a more personal level, finding the time and energy to share our story and, of course, honouring Steve in the process.
What’s been your proudest achievement to date?
Raising our two beautiful daughters to be the caring, capable, successful women they’ve grown up to be.
What would be your dream project?
Anything that inspires me to extend myself.
What does the future hold?
For now, spending precious time with Steve. Also, looking forward to our daughter’s wedding next year, the promise of grandchildren, and hopefully the opportunity to visit family in Holland one day.
What’s your favourite local neighbourhood and why?
Warners Bay and surrounding areas. I love living near the lake so I’m biased! The lake looks different every day but it’s always a picture. I often take Steve for drives to Green Point, Eleebana and Marmong Point. Another favourite is Speers Point Park where we walk our dog, Archie.
Can you name a local hero?
Every carer is a hero!
What do you look forward to doing most in Newcastle in summer?
Walks on Redhead Beach in the late afternoon sunlight, the sand between my toes.
Morning tea with friends in one of the cafés overlooking the lake at Warners Bay.
Where and what was the last greatest meal you had in Newcastle?
A delicious Vietnamese meal at Lan’s on Darby Street.
Where is your favourite getaway destination?
Jimmy’s Beach/Hawks Nest – Steve’s favourite holiday spot. It’s less commercial than Nelson Bay, has great beaches, the bay, dolphins…
Your #1 Newcastle insiders tip?
Get out and enjoy everything Newcastle has to offer! We have a spectacular coastline, the beautiful shores of Lake Macquarie and the vineyards and Port Stephens close by.