Carterton’s Shona Daubé may be leaving her paid role helping Wairarapa people with multiple sclerosis [MS] – but she will keep writing about chronic conditions with her typical light-hearted touch.
Daubé has written five short books since being diagnosed with MS in 2014. The titles say it all: Pee into this jar for me, please; Does my bum look big with this stick? and her latest: Things that may be missed at my Autopsy.
After three-and-a-half years working part-time as the Wairarapa community advisor for the non-profit society MS Wellington, Daubé is focusing her precious energy elsewhere.
She is a well-known Carterton resident, often spotted riding her decorated red electric tricycle around the town’s streets. She lives in an eye-catching 1860s High St cottage, notable for its pink paint job.
Daubé’s self-publishing business, Pink Cottage Publishing, is her outlet for sharing her stories of diagnosis with MS, coping with the disease and facing some unavoidable truths.
“The subject of my books won’t be everyone’s cup of tea – for example, my latest book is a humorous look at dying,” she said. “MS can be all-consuming and, at least for a while, there can be something that makes people smile.
“I believe if you have a positive outlook, it makes a huge difference to how you feel each day.”
Daubé [61] now plans to write “something longer”, hang out with her cat Dorothy and declutter her cottage, which is filled with retro and vintage collections.
“My own MS needs a little more maintenance,” she said.
“I’ll also continue to work on bringing back the history of our cottage, which was once owned by the Sisters of Compassion and used to accommodate people who were down in their lives.”
Daubé was keen to leave MS Wellington on a high note, so hosted a beading workshop in Carterton last month, run by the CanBead charity.
Daubé saw the workshop as a chance for people with MS to spend time not worrying about their condition: “It was two hours of making jewellery and not thinking about what they can’t do.”
There are about 40 Wairarapa people on MS Wellington’s books – but actual numbers with the disease here are thought to be three times that. Many are still working, with busy lives, and the organisation only hears about those who approach them for support, Daubé said.
“My job involved advocacy, ensuring people with MS got the things they needed, as well as education and helping people learn about MS when they are first diagnosed.”
She is encouraged MS Wellington has employed Masterton resident Jo Dean as lead advisor and new Wairarapa community advisor, so there won’t be a gap in local support.
Daubé, a former nurse, is a strong advocate for stem cell treatment to be available for MS sufferers in New Zealand – and sees it as a preventive measure for the health system. The therapy is used here for the treatment of some cancers.
“People diagnosed with MS in the last 10 years have more medications open to them,” she said. “However, we are still catching up with other countries. MS sufferers in New Zealand must travel overseas for stem cell treatment, at great financial cost [as much as $150,000], but it can put people into permanent remission.
“There are long-term implications if people don’t get the treatment – as their level of disability increases, there are costs involved. It makes good economic sense to make the treatment available here.”
MS impacts the brain, spinal cord and optic nerves, which make up the central nervous system. Sufferers experience peaks and troughs, with fatigue a significant factor.
Daubé, the mother of three adult sons, has found Carterton a favourable place to live with the disease.
“I love Carterton because it’s not too conservative and the people are very supportive. My husband, Eric Daubé, is principal of Dalefield School, so together we feel very much a part of the community.”
Originally from Wellington, Daubé said Wairarapa as a whole is “wonderful”.
“The people here are much more accepting of those with chronic conditions and disabilities. Wairarapa needs a pat on the back for that.”
Daubé’s books are available at Heart of Arts in Carterton and through her website: pinkcottage publishing.co.nz
