THAT’S LIFE WITH

THAT’S LIFE WITH NARELLE NARELLE TAYLOR It has been 25 years almost to the day since I went to a seminar for the newly diagnosed at MSWA in Wilson. To me at the time, it could have just as easily been for the newly condemned. I went anyway, with my family. I was deep in denial so everything they told us seemed so horrific. I recall my late husband Greg got up in the middle of it and went to the races. I don’t blame him. When Dr Alan Kermode addressed a large group of us, he focussed on what the research had established so far. He was kind without giving false hope. He spoke about the dedicated work towards finding a cure. I remember he said some research had found MS is more common in areas farthest from the equator, such as in Scotland, but virtually unheard of among the Inuit of the Arctic. How often an Eskimo encounters a neurologist, I wondered. Next, the people around me began to ask questions and share anecdotes. Some of their stories were very moving and all of them were sad. The indignity of the disabilities that MS inflicts seemed to be a theme. I wanted to say something positive so I stood (I could then), and told the seminar I did not care how my disability appeared to others. “I still have things to do,” I said. “I will keep doing them, even if I have to drag my back legs.” Everyone laughed and so did I. But I was actually serious, and I still am. I have had MS for such a long time now. I no longer wait around for a miracle cure and instead get on with this business of living my life. On and on. As John Lennon once sang, “Life is what happens to you when you are busy making other plans”. As it turns out, I have literally had to drag my legs sometimes, most recently when I was stranded on my bed. It was just on dawn and my powerchair was parked on the other side of the bedroom. It was an especially busy time of the day at the aged care facility where I live, and the conversation I already had with my shower lady told me she considered it far too early for me to get up. I did not agree. After she left the room, I slid down the side of my bed like a teenager escaping to a party without their parents’ knowledge. I did my best impression of an SAS soldier to pull myself across the carpet on my belly towards my mobility device. I impressed myself. When I reached my powerchair, I spent a good 40 minutes climbing up to sit on it. Part way through this massive effort, I was grateful for physiotherapy. I don’t suggest it was pretty though. Triumphantly positioned in my powerchair, I moved my hand to the throttle and smiled. Thunder Road. I drove into the common area and looked smug. I think we’ve all got stories like this. All of us with MS are getting on with it every day. A decade after I had been dealt what Greg used to so succinctly call “the s…t cards” of MS, I went to another seminar for the newly diagnosed, this time as a speaker. The people I saw reminded me what a shock it all had been. A young woman came up to me after I gave my “keep going” speech and said she was relieved. She told me, “I figure that’s the way to do it.” Here I am getting on with it, and pragmatic about some of the collateral damage. Last week I shattered a floor-to-ceiling window with the footplate of my powerchair. I was unharmed, and since MS made me do it, I was also not to blame. I did feel bad but these things can happen when you need a 200kg machine to move around a room. The footplate has form. Last year it reduced a ceramic toilet to a pile of shards. I also felt bad about this. Fortunately, the staff at my aged care facility believe that my independence is worth more than a Caroma toilet bowl or a sheet of glass. They also get on with it and call a tradie. 18 | MSWA BULLETIN WINTER 2017

MEET Ms CARER Meet Ms Carer, a fit and active lady enjoying her retirement years with a beloved partner. But, alas, her marriage is somewhat of a triangular affair with the third party being MS. Recently this interloper (MS) has not been content with playing second fiddle and is trying to dominate the relationship. Consequently Ms Carer feels overloaded with the work and effort needed to maintain a loving and elegant lifestyle with her partner of 40 years. Ms Carer is reeling over the loss of free time with so much of her day and night taken up with the tedious and often hard tasks of caring. The greater emphasis now placed on her role as carer also dulls her usually positive outlook and lessens the time and energy for feelings of love and friendship. Her rose coloured glasses are cracked and cloudy but true to her personality she keeps them nearby, hoping they can be repaired. And she also copes by making a practical assessment of immediate needs and devises a plan of action. Ms Carer is just waiting to let her hair down but for now she has it tied up underneath her sponge hat, a hat so useful for absorbing burdens and soaking up tears. The hat carries her busy bee moniker and a useful bell now that she feels like she is at everybody’s beck and call. Always enjoying fashion, Ms Carer still tries to dress nicely with practical but stylish black slacks and a colourful top. Her amethyst necklace is worn because traditionally it was thought to heal and keep the owner cool headed and it holds other symbolic meanings dear to Ms Carer. An added vest with useful pockets holds her dreams and interests close to her heart as she does the more mundane chores but more about the vest later. Ms Carer is weighted down with her red bag chock full of MS carer paraphernalia: a notebook full of medical notes, prescription refills, various medications, printed instructions from the chemist, a water bottle to ensure her spouse drinks his two litres daily, tools to fix wheelchairs, catheter supplies, cleaning products and a rock or two to signify the weight of responsibility and workload – this is adjustable. Her arms and hands seem to have grown oversize to cope with her load. Ms Carer’s vest is worn in anticipation of the interests close to her heart which seem to be a bit forgotten in the recent workload of care. The busy bee pocket holds a sewing machine for her much loved hobby time. The flower pocket reminds her of her love of beauty and her childhood love of picking every flower she saw! There is a pocket for love, the attached key opens her heart. The star pocket looks empty but it is full of pride at being a star at coping and managing life’s dramas. Ms Carer keeps checking her well-worn rose coloured glasses because one day, just maybe, she will look through them and detect a silver lining. THE PRESENT DR ANDREW E. ONG Each of us has a bank which credits our account every morning. However, if we do not draw or utilise this account the credit cannot be either carried forward or accumulated, but is lost forever. This bank is called time. Each day we are credited with a day’s worth of 86,400 seconds, but none can be carried over to the next day. If we waste a second, it is lost forever. We must therefore invest this time as best we can in maintaining our health, happiness, peace of mind, and in trying to make the world a better place to live in. This is the value of time, but how do we spend it? Time is the most valuable gift we have been given, but the least appreciated until it is brought suddenly to our notice. A student who has failed an exam all of a sudden knows the value of a year wasted. Mothers of premature babies know the value of a month. Politicians know the value of a week. Lovers in a private romantic rendezvous know the value of an hour. Miss a bus or train and you will know the value of a minute. Witness an accident and you will realise the value of a second. Perhaps ask an athlete about the value of a millisecond? Therefore, treasure every moment that you have to spend. Ensure that a second spent counts for something, for time, it is well said, “waits for no person”. Share a moment with a friend, a lover or someone special. Yesterday is history, tomorrow is a mystery, but today is a special gift. That is why it is called ‘The Present’. MSWA BULLETIN WINTER 2017 | 19