Publications | MSWA

Views
3 years ago

MSWA Bulletin Magazine Spring 2020

  • Text
  • Mindfulness
  • Coordination
  • Bulletin
  • Lottery
  • Bulletin
  • Accommodation
  • Camps
  • Neurological
  • Ndis
  • Outreach
  • Mswa
Support coordination | Mindfulness for beginners | Camps are back! | Outreach news

MSWA

MSWA MEMBER FOR RICHER, FOR POORER. Brett and Kylie Jones’ phone rang early. “Who on earth is calling at 7:45?!” said Brett. It was Friday, 11 September 2020, and on the other end of the call was Marcus Stafford, MSWA CEO, telling Brett and Kylie they had won the .5 million Grand Prize in the MSWA Mega Home Lottery. In a first for the MSWA Mega Home Lottery, the winning couple are not only long-term fundraising supporters, they are also MSWA Customers. As the prize draw is independently audited and drawn through a certified random number generator, Marcus did not know who he was calling that morning, and was gobsmacked when Brett identified himself – the couple had met Marcus on a few occasions at their local MSWA Services Centre in Beechboro. “Big fella, is that you?” exclaimed Marcus. “Well, that’s just made my day!” When the call ended, the couple sat just sat staring at each other. “I was sobbing,” recalls Kylie. They rushed to tell Brett’s parents, who live next door: “WE’VE WON THE HOUSE!” It was a truly life-changing day for Kylie and Brett. Over the years, the pair have battled through money worries, MS-related curveballs, and Brett has had several heart attacks after an accident tore a valve in his heart. “My children have seen me cry twice,” says Brett. “Once, when my nana died. And the day we won the Mega Home Lottery.” Kylie was diagnosed with multiple sclerosis (MS) in 1998, aged 32. By 2001, Kylie’s mobility and spatial awareness were significantly affected, so Brett quit his job as a butcher to care for Kylie full-time. “I chose to leave work and look after Kylie,” says Brett. “I love her. We signed up to do everything together.” The initial diagnosis was a shock – neither of them knew much about life with MS. Kylie presumed the worst and, on a low day, told Brett he should leave her. “I laughed and said to her, ‘Where else would I want to go?!’” recalls Brett. This was around the time of their 10- year wedding anniversary. Wanting to make a meaningful gesture, Brett organised a party and secretly arranged for the celebrant who married them to attend and renew their vows. “It was wonderful,” says Kylie. This story sums up the couple’s attitude to life. “We’ve always tried to stay happy,” says Brett. “Sometimes it’s been harder than others.” Kylie says she focuses on being positive for Brett, their three daughters and five granddaughters. “If Mum stays happy, everyone is happy,” explains Kylie. Kylie and Brett have been supporting the MSWA Mega Home Lottery for many years. “The cause is so close to our hearts. We always try to buy two tickets,” says Brett. Ironically, they only purchased one ticket in the draw that they won because their budget couldn’t stretch to two this year. 16

The couple regularly attend the MSWA Beechboro Services Centre for the Outreach group and physiotherapy for Kylie. “Without the Centre, people would really struggle,” said Brett. “The staff are fantastic. Some people don’t have partners and MSWA is where they go to get support. Not every Kylie has a Brett.” Like many people who are newly diagnosed, when first joining MSWA in 1999, Kylie was hesitant about attending Outreach. “I didn’t want to see my future,” she says. “What I didn’t realise was that MS affects everyone so differently. Once I worked up the courage to go to Outreach and saw people at all stages of their condition – walkers, wheelchairs, sticks – I thought, ‘There’s not one of us that is the same’. We’ve been attending ever since.” Kylie and Brett are proud that their children and grandchildren often attend Outreach with them, noting that Kylie’s condition has complicated the kids’ lives but that they are richer people for it. Once, after a visit to the Beechboro Services Centre, Brett’s young granddaughter was trying to describe an Outreach attendee to him, saying “he was the man in the green jumper”. Brett was taken aback, realising that “the man in the green jumper” was also the only person there using a wheelchair – but that’s not what his granddaughter noticed about him. She didn’t see the disability. Brett recalls it as one of his proudest moments. “At Outreach, everyone is so different, but we all have the one thing in common,” says Kylie. “You walk in those sliding doors and everyone is equal.” Top: Brett and Kylie celebrating with MSWA Beechboro staff. Above: Photos from Brett and Kylie’s blog: on the road in the MS-friendly motorhome they converted. The couple’s youngest daughter, Rebecca, says, “The most positive thing about your mum having a neurological condition is witnessing all the challenges she’s overcome. Mum and dad have the most positive outlook on life. They’re a massive inspiration, my parents. Everything I’ve ever done it’s because of these two.” Kylie and Brett attribute a large part of their happiness to taking regular trips around Australia in a van they converted into an MS-friendly motorhome, installing handrails anywhere Kylie needs them. They document their travels on a Facebook blog titled ‘Our Adventures – On the Road with MS’ with the aim of inspiring other people to get up and go on an Aussie adventure, no matter your budget or ability. “We’ve always had a small budget so we stay in free campsites in the bush or in the yards of the amazing people we’ve met on our travels. We love it.” says Brett. “When we were trying to process the news about winning the Mega Home Lottery, Kylie said to me ‘You know, we can probably afford to stay in some caravan parks now’. “It’s the funniest thing I think I’ve heard!” “I can’t see us doing that,” remarks Kylie. “Yeah, we probably won’t!” laughs Brett. In seriousness, Brett adds, “My biggest stress has always been ‘If something happens to me, how will everyone take care of Kylie?’ Now I don’t have to worry.” Brett muses, “We’ve done the sickness, we’ve done the health, we’ve done the poor. Now we’re doing the rich.” 17

Bulletin