MULTIPLE sclerosis had been quietly making its appearance for years before former primary school teacher Elysse Jones was diagnosed with the disease in 1992.
“I’d had a lot of odd symptoms that all added up once I was diagnosed,” Elysse says. But for years before that diagnosis, she says she was often told the symptoms were nothing.
Issues with balance had been the first sign that something wasn’t right. “I found myself tripping or falling, often. I’d developed a reputation for it,” she says. But doctors could find nothing wrong. During these years, and those following diagnosis, Elysse managed to break her hip, a tibia, a fibula, an ankle and her arm in falls. She could never, though, have imagined the debilitating illness that was developing.
Born in New Zealand, Elysse has an illustrious Norwegian background. Her second great-grandfather was the first prime minister of Norway after it broke away from Denmark in 1905. She says there was no family history of the condition.
“We didn’t know what was going on. Multiple sclerosis is a hard thing to diagnose because it creates different symptoms in different people.” For instance, the blurred vision commonly accompanying the disease doesn’t affect Elysse at all, but issues with mobility and body functions do.
The disease, which involves damage to the sheaths of nerve cells in the spinal cord, can cause a host of problematic conditions. Some people experience numbness and severe issues with muscular co-ordination. Others develop impaired speech or blurred vision. Symptons can last a short time or stay permanently, with the severity of a symptom randomly fluctuating, too.
For Elysse, the disease quickly led to her being unable to stand. Apart from brief, supported moments, she has been confined to a wheelchair now for more than 20 years.
Living with husband Allan at their rural Paroa property, Elysse says isolation is a by-product of the illness. When she first developed the disease, she says statistics warned her to expect to lose 80 percent of her friends. “That was wrong,” she says. “It’s more like 90 percent. I think some people I once knew cross the road if they see me, rather than come and say hello. They’re scared of the reality of the disease.”
As time has gone by, Elysse says everything has become harder. Unable now to carry out any physical tasks, her long-held interest in local history and in family genealogy have been sustaining. “And books,” she says. “Reading has always been a big part of my life, and while to a lesser extent now, it still is”.
Praising husband Allan who, along with an employed caregiver, provides fulltime care for Elysse, she says she would give him “several gold stars” if she could, the trademark approval of a long-time teacher. While limited now in what they can do together, she says, “we both love music, and that’s one thing we can still enjoy together”.
The tending of Elysse’s heritage roses, for which she has long had a passion, now rests with Allan. For Elysse, most of her time now is spent “trying to be a normal person”.
At the time of Elysse’s diagnosis, in 1992, she says wheelchair access in schools was “dismal”. She’d been teaching for years in primary schools throughout the Eastern Bay, including Whakatane, Edgecumbe, Kawerau, Galatea and Paroa. It was a career she was quickly forced to give up.
In following years though, Elysse made use of her skills as an adult literacy tutor. “I really enjoyed that,” she says, but funding for the literacy scheme that employed her is no longer available.
But there are things that Elysse remains thankful for. Their rural property and its nurturing bird-filled environs is “a lovely place to be”. She is also thankful for her “gold star” husband and his work with Whakatane Bird Rescue of which she “can’t help but be involved with”. And the fact that, fortunately, in Elysse’s case at least, multiple sclerosis hasn’t brought physical pain. “I have to be thankful for that.”