Courage In Each Step - Marian Lough's Story

At 52, Marian Lough is too young to be stricken down by Parkinson's Disease, a condition which debilitates the person physically, making bodily movements difficult. Although she's still in the early stages of the degenerative disease, she talks to CHONG SHEAU CHING about how it has changed her life, and how she keeps her chin up. "I love Kuala Lumpur!" Marian Lough said excitedly, serving me a refreshing Marian's Cocktail - Ribena in tonic with a twist of lemon. "I love the smells and the wetness of the wet market, the side streets, finding things I've never seen before and talking to the locals. "I just wish I didn't have to leave, " she sighed. "I'll miss all my friends, and - this may sound strange - the mini buses!" "I was on one yesterday, and the bus driver, who was puffing while carrying on a shouting match with the conductor swerved the bus dangerously at high speed. My knuckles went white from gripping the bars too hard, but I though to myself, ‘What a lovely experience!'" And that just about sums up Lough's unputdownable spirit. Despite the difficulties she has maintaining her balance, she sees thorough the potentially crippling situation and finds joy even. But the joy she feels inside is not registered on her face. Just smiling is big effort for people with Parkinson's. Their faces are mask-like and devoid of expressions. Blinking impairment makes them look like they are sharing at people. Emotional stress results in uncontrollable hand and leg tremors. "I'll miss the apartment," said Lough, as she proceeded to show me around. Her apartment on Jalan Perumahan Gurney overlooks a busy, noisy street in Ampang. "I have enjoyed my three years here tremendously. I prefer it to a big house in a quiet area, because I can see the life of a whole community going on around me from my kitchen window!" she said. Kampung Keramat lies behind her apartment building. "The kampong is extremely lively in the mornings and late afternoons. Boys fly kites, people take splash baths near a well, and women pound spices on pestles. They slaughter animals in that clearing for Hari Raya. When it rains, they cover their things with plastic sheets and banana leaves, and move things around as fast as lightning. I can feel myself doing everything they do! It's amazing. Pointing to the footpath near a mosque, Lough described her favourite scene of the day in her slow, soothing voice. "The man cycles to the mosque three times a day with his bike piled with boxes. He parks near the banana trees, then changes into his sarong and goes into the mosque. When he comes out, he sweeps the part with a coconut broom. He throws some rice on the path for the birds while a black cat cuddles around his feet. He's part of my life in KL!"     In Lough's world, everything, including those insignificant and depressing to others, plays a part in making her life worthwhile and intriguing. A repetitive event isn't boring to her, but a fresh episode of an on-going, life-sustaining process. Her approach is a stark contrast to many Parkinson patients' gloomy and apocalyptic outlook of life. Instead of leading a subdued home-based lifestyle to minimize physical mishaps, she goes but all her way to live every minute as actively as she can. "I often visit my masseuse and sometimes nap on the couch on her verandah. Remember that flood in the kampong several months ago? I helped her clean her house! It was so gratifying to be right there with the folks. I love every minute of it!" Her excited voice filled the kitchen with energy as she told me about other interesting characters in the kampong. Lough proceeded to make some sandwiches, her hands trembling visibly. But she refused help, despite the risk of cutting herself. I watched her as she worked and talked about the "wonders" she sees around her - which to us, are but everyday events.  Her movements were in slow-motion and her conversation punctuated by many optimistic expressions such as "amazing", "lovely" "sweet" and "charming". I realized, here's a woman determined to drive the disease away in her mind by focusing on the positive and God's many little wonders. Originally from Auckland, New Zealand, she and her husband, Michael Lough, moved to Singapore in 1990 after living in Australia, the Pacific Islands, England and Scotland. Trained as an educator for children under seven, she was involved in pre-school training and story writing in New Zealand. She also served as the President of the Auckland YWCA, a committee member for the National Council of Woman's Organisation of Auckland, and a committee member of community-based welfare organizations such as Woman Line, a listening service for Maori women. "I was always busy. If I wasn't working, I was keeping in touch with my big network of friends. When Michael got this interesting job in Malaysia, I said to myself, "I've got to see Malaysia. It's the chance of a lifetime." The loughs moved to Kuala Lumpur in 1993. soon after, Marian began feeling her right hand and her arms and legs trembled uncontrollably when she felt tired and pressured. But she was too busy settling down to give the symptoms much thought. She thought the signs were caused by missing her piano and driving her car. At a physiotherapist friend's urging, she finally went to see a doctor.  The initial tests showed nothing, but Lough's concern grew after witnessing a fatal accident on the Seremban highway which left her trembling violently. She went to a neuro-specialist for more tests. "I was shocked when the doctor told me I had Parkinson's Disease. I associated it with old people, and at 52, I was hardly old." She looked straight into my eyes. Her face was expressionless, but her voice spoke volumes about her frustration. "It was difficult to accept taking pills for the rest of my life and knowing that my body wasn't functioning normally. "I have to think before I can even smile - something I could do since I was a baby. But the most crushing bit was having to give up my love for traveling. I was devastated. Totally devastated." "My disease changed the dream retirement plan we had been looking forward to for so long. We had planned to travel the world. I have always wanted to talk to people who live in exotic places and hold the children's hands. Now, we have to stay put in New Zealand so that I can cope with the advancement of the disease." Lough looked down at her hands as her voice trailed off. "My daily life now is about dealing with pills. Pills. Pills. Pills. I dislike them but I've to take them. Staring on the pills was difficult. Morning sickness and my revulsion at the thought of the pills occupied my days.  Sometimes, I felt like shouting, ‘Why me? Why me?' and throwing the pills out the window." Her eyes darted between the wall and me as her shaking hand brushed a lock of hair from her forehead. "Once, I broke down and cried at a pharmacy counter because I couldn't see myself buying the pills for the rest of my life. I lived with tremendous despair for several months. Support from Michael, my children, and friends has helped me to accept it. Reading information on the disease sent by my children and friends also helped me to cope. "When I was still healthy, I was so busy that I forgot that there was a whole world out there besides my own. I was uaware of the wonders. The disease made me more aware of my own mortality as it's something that I have no control over. It gives me a sense of urgency I've only one life! "One life. One life. This is it. I won't have it again, so I have to get out there and live every minute of it fully." Marian Lough was ill from taking her medication. At that time, she was reading the novel, Chasing the Monsoon. Inspired by the key character, who visited India alone despite a disabling disease, she courageously traveled to India by herself. She interacted with all kinds of people including beggars and street people in the most unlikely of places. She wrote 50,000 words about her trip and sent her story to her friends. She has visited India twice since. Writing has been her consistent response to life's ups and downs. A few months after she was diagnosed with Parkinson's Disease, she had a hysterectomy in which a tow-pound fibroid was removed with her uterus. But rather than dwell on the miserable effects of surgery, Lough recorded the daily happenings outside her window and her interactions with patients and staff. While recuperating at home, her notes blossomed into a humorous and touching story about her hospitalisation that story, she also sent to her friends. Another way she coped was to draw energy from other people, Lough put an ad in a local newspaper asking for Parkinson patients and their families to gather at her house to form a self-help group. Upon discovering a newly formed Malaysian Parkinson's Association, Marian joined them and became a committee member. She initiated a phone tree and regularly phones the members, including those who stay outstation. Lough thinks lightly of the responsibility, even though she herself has to cope with the disease. "Members feel more comfortable sharing with another member about the problems we face, such as constipation and depression. Sharing our experiences and laughing together is very important. A few mines of warm concern can mean a lot to people who are depressed and feeling hopeless. It's extremely satisfying to be able to give something to others. "I tell Parkinson patients to stop thinking about what's wrong with them, and instead to do something they have never achieved before. At the recent farewell party given to me by the Association, a new member told me, "I'll never forget you. You are the first Parkinson person I confided in. Your positive attitude has helped me to cope with my disease. "You see, life is about giving and receiving." She gave me another calm, reassuring smile.   "I love people. Everyone, old and young, dark and fair, big and small, like you." She patted my hand gently. "I'll always have lots of things to do with people. Parkinson hasn't changed me very much except slowing me down physically. I can't walk as fast as before, but I can still get involved in may things. I don't want to hide in a corner and fade away." She gripped my hand tightly. Marian Lough has been writing more. Her letters to her friends in New Zealand entitled, "From My Window" describing the kampong events from her kitchen window, have been so well received that her friends copy them for their friends and neighbours. The letters have also caught the attention of a New Zealand museum. Her series of children's books, published by Arus Intelek, are her best. They include Uncle Zainal And His Monkey, My Big Sister, and How Do You Go To School? She recreated kampong and city lives through children's curious eyes, helping the readers think creatively. Lough is an active member for the international Women's Association and the YMCA in Kuala Lumpur. She continues to keep in touch with friends. She listens to their problems, and tries to help as much as possible. She introduces friends with similar interests so that they can expand their business, careers and hobby networks. She regularly attends the monthly Writer's Group meeting at the British Council. As she listed her various involvements, I asked, "What about your future?" She replied, matter-of-factly, "I will stick to my special diet strictly, drink lots of water, walk, and do qi gong exercises to stay fit. I will keep doing things, moving, thinking and smiling." She paused, then said, "I don't know how the disease is going to progress and hot it'll disable me; I don't want to dwell on the future to much and let the disease become a fear. Occasionally, I'm overwhelmed by thinking about how I'm going to finish up and how Michael is going to cope when I become totally dependent on him. "When I go back to New Zealand, I'm going to resume my hobby of painting with my trembling right hand! And when I can't even do that any more, I'll find another way to tell stories. "Michael's going to build a lovely one-storey house with doors wide enough for wheelchairs. It will not be just for us, but for my fiends on wheelchairs too. "Oh, there are many, many things I want to do. There will be limits, but I hope I'll have time to do most of them." She pulled the kitchen window closed. Suddenly, a light flickered in Marian Lough's eagle-sharp eyes and she threw the window wide open again. "Look!" She pointed a shaking index finger at the dirt path in the kampong. "A rat. It is scurrying by that banana tree! Look! Look! A lovely kingfisher is swooping down! It's trying to follow the rat around! Wow! The clever rat is getting away!"