MSWA2016302 Network Magazine Spring 16 v4

That’s life
with Narelle
Narelle Taylor
Anywhere with Colin
Ros Harman, Super Navigator
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 Agent’s 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. That we’d
be able to navigate our boat by satellite, because of what
we’d just bought, but that 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 ‘seatrials’
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.
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.
24 Spring 2016 The MS Society of South Australia & Northern Territory The MS Society of South Australia & Northern Territory Spring 2016 25