MSWA Bulletin Spring 16

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THAT’S LIFE WITH NARELLE NARELLE TAYLOR I haven’t always lived in a nursing home, neither have I always had to live with multiple sclerosis. I was quite normal and just before my diagnosis, I lived a robust, even adventurous life that I thought I would tell you about. It was 1982 and my husband Greg and I had built and launched the boat we planned to live on with our three children. We’d then been and visited both sets of the children’s grandparents. One set in Sydney, NSW and the other set in Kalgoorlie, WA and in doing so, we’d given the children a rushed familiarisation with mainstream Australia’s culture. We felt that because they’d spent most of their lives in eastern Arnhem Land in a remote mining community and had never seen things like a double-decker bus or an ice-skating rink we were obliged to broaden their horizons. We’d arranged distance education for them whilst on-board and had bought the latest technological devices for safety and labour-saving, whilst we’d be ‘under way’. Consequently, our suitcases were very heavy and bulging with our goodies and we flew into Darwin planning to get a connecting flight to our settlement, board our boat and then commence on the wonderful adventure we’d planned. We arrived in Darwin to find the town was full. There were ‘Men At Work’ concerts and a Tax Agents Convention both happening in the same week. The town being so popular decidedly inconvenienced us. It was Darwin’s busiest weekend since cyclone Tracy. Lots of repairs to cyclone-damaged buildings had been done over the past few years but to be phoning around town for accommodation whilst waiting for vacancies on a plane out, was what we regarded as nightmarish. One morning, after failing once more to get on a flight, we’d secured, by phone, one night’s accommodation at a motel just around the corner. We decided to walk. The streets seemed to be crowded; Greg and I each carried a heavy, bulging, suitcase. Greg carried two actually, but neither of us said anything. We both knew things were bad enough without embroidering our circumstance by grizzling. I was tempted to groan though in the sub-tropical heat, the dense pedestrian traffic, the suitcases that were so heavy and three children to keep an eye on. The fact that we’d be able to navigate our boat by satellite, because of what we’d just bought, but technology had not advanced sufficiently to put wheels on our suitcases, is curious today, but was at the time, very uncomfortable. I really felt like groaning. We made it to the motel. The motel certainly appeared to be good enough. It would keep weather out. Mercifully, it was air-conditioned, and although we had said ‘yes’ to the motel management’s offer to put all the beds we needed into our one room it sure looked déclassé when we entered the room. Eventually the girls wanted to swim. We hoped the swimming pool would cool us down and brighten our moods. Poised at the water’s edge, one child screamed, wailed like a Sicilian widow and staggered backwards away from the pool. Within seconds her sister did the same and of course, so did their youngest sister. Floating in the pool was something so germy and horrible that we, the parents, weren’t going to get wet either. We returned to our cramped room. The girls had had a really memorable experience and perhaps it was that they’d never forget it that made any talking unnecessary. It was very quiet. Eventually, Greg stood, changed into a clean shirt, one with a collar (that meant something serious), kissed me on the cheek and said he’d be back in a few hours. He left. We waited. He came back. He’d bought a car. We’d drive out of Darwin, down to Katherine and then across Arnhem Land and then we’d be home. There were no roads into Gove in those days so the trip after Katherine was going to be on bush tracks; the occasional creek/river crossing, buffalo herds, brumby packs and kangaroos everywhere. We planned to sleep in the vehicle (a LWB Toyota Land Cruiser), and avoid any heroics with snakes or migratory crocodiles. We’d bought tinned fruit, a can opener, toilet paper (bio-degradable), spoons, water in huge flagons and we had a compass and a map that didn’t look all that thorough. Three days of driving and we were back home, able to see our boat, above water, and also the bloke who had said to Greg on the phone in Darwin that he’d buy the car. We got on-board and unloaded the suitcases at last. We spent a few days in Melville Bay where we fine-tuned the new contraptions we’d bought and ventured out to do ‘sea-trials’ before we headed away. After each day on the water, doing sea-trials etc., we’d walk up the beach to the boat club and I would be unsteady on my feet because of what I thought was some ‘sea-leg’ thing. It was years before I had my unsteadiness investigated and MS diagnosed. Prior to my diagnosis, I was having great fun doing such interesting things and even now, I find my diagnosis no reason for doing things of less interest and no reason to have less fun. 20 | MSWA BULLETIN SPRING 2016
ANYWHERE WITH COLIN ROS HARMAN, SUPER NAVIGATOR I held out for as long as I could. All around me I saw people succumbing to the pressures of advertising and peer pressure, but I was determined to stay strong. I would not buy a Navigator for my car! No, not even if sometimes I did end up lost and bewildered up blind alleys, meandering through unknown suburbs, having to stop, often on the side of roads, to pour over my ancient street directory. Then one day an old school friend, coincidentally the same age as me, fervently pointed out that difficulties with directions were nothing to do with age or hormones. “I blame urban growth,” she said, so I decided I would too, and I bought a GPS Navigator. My Navigator has transformed my life. I love the fact that I am able to choose a voice for it, so I picked one that sounds like Colin Firth. When I’m driving and the voice says – “In 500 metres at the roundabout take the second exit”. I smile dreamily as I remember that scene from Pride and Prejudice where Colin Firth comes striding out of the lake all damp and masculine in his wet shirt. I’m so much more relaxed driving now with Colin in the car. Sometimes I even take a long drive just to spend some quality time with him. I took a long drive with Colin the other day and went to visit my niece. She is the first of her generation in my family to have children of her own, and I have discovered that I love being Great Aunty Ros, or Grunty Ros as they call me. My Great Niece (Griece?) at two and a half has recently discovered a new word and manages to use it in every sentence. “Akshully (actually) me don’t want soup,” she said very firmly today, stomping her feet to make sure we knew she meant it. “Me want cake for lunch akshully.” Her brother, at four and a half, is a passionate devotee of superheros and invited me to look at his Spiderman T-shirt and shorts in great detail. He hates to take them off, much to his mother’s despair. She has managed to buy all the Spiderman material available in Spotlight so she can make multiple outfits. The little hero also taught me how to hold my fingers so they shoot webs out and catch the baddies. I’m sure I will find that very useful. Both children are fascinated by my wheelchair and spent considerable time examining the brakes. Spiderman very helpfully pushed me around the house and showed me his toys. We had a little itsy bitsy problem when I decided to go down a step to see the new trampoline, resulting with me lying on my back with my legs in the air. It didn’t hurt very much and he tried very hard to help me up, but in the end he used his supersonic voice to call his mum who came faster than a speeding bullet to save the day. I think super powers run in the family. I wonder what mine could be. I’ve thought about leaping tall buildings in a single bound but I don’t really have a head for heights. X-ray vision would be useful these days; I could save a packet of money on medical bills. I quite like Wonder Woman’s outfit, especially her red boots. Every woman craves red boots. I’m a bit of a romantic, but living with MS has taught me I also need realism. I think perhaps I might become The Intrepid Ros, Super Navigator - able to go anywhere “akshully”, with Colin. MSWA BULLETIN SPRING 2016 | 21
Page 1 and 2: BULLETIN THE OFFICIAL MAGAZINE OF M
Page 3 and 4: Letter from the Editor DR GREG BROT
Page 5 and 6: A message from the General Manager
Page 7 and 8: Just one in 1,000 people with MS ha
Page 9 and 10: That certainly seems a more compreh
Page 11 and 12: Eating Well Healthy eating and an a
Page 13 and 14: DR GOOGLE - TO BELIEVE OR NOT TO BE
Page 15 and 16: PURCHASING EQUIPMENT? WE RECOMMEND
Page 17 and 18: muMS GROUP - A SHARED SPACE TO TALK
Page 19: ut depending on the approach, the e
Page 23 and 24: Don’t let a little dispute injure
Page 25 and 26: FUNDRAISING ROUNDUP MEGA HOME LOTTE
Page 27 and 28: I would also like to thank all the
Page 29 and 30: SOUTH WEST Regional Round Up The la
Page 31 and 32: ALBANY OUTREACH NEWS CAROLINE CLARK

MSWA Bulletin Spring 16

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