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[back] Great views from her window Chong Sheau Ching (The Star) - 4 August 1999

THE STAR (Stories For My Mother Column) Wednesday, August 4, 1999

Great views from her window

By Chong Sheau Ching

A RECENT article entitled There is no looking back in this column generated an astonishing number of e-mail from readers, many of them from the corporate world, who are lost and unhappy. They feel trapped and are unable to enjoy themselves despite their material possessions. They find their lives empty and meaningless. Worst of all, they don't like themselves and everything around them.

I feel sorry for these young, healthy and able-bodied persons whose future looks bright. I wish they could meet my friend, Marian, from New Zealand. Perhaps she could change their view with her tremendous appreciation of life.

Marian and her husband Michael moved to Kuala Lumpur in 1993. Soon after, she was diagnosed with Parkinson's disease, a degenerative nerve disorder. She was only 52 then.

For Marian, simple household chores and walking are physically tiresome. As she is unable to balance properly, she falls easily. Her face is mask-like, devoid of expressions; she has to think before she can smile or express other emotions.

She uses just one hand to manage her daily life and keeps her other hand just below her waist a distinct symptom of Parkinson's. Although her mind is alert, when the disease advances, er ability to express herself verbally or through writing will deteriorate. Eventually, she will be confined to a wheel-chair or be bedridden.

Coping with the gradual physical degeneration is no easy task for Parkinson's patients as the condition is oppressive and results in mental torture. The saddest thing was that Marian and Michael had to give up their dream retirement plan of traveling around the world. Marian had wanted to tell inspiring stories about people through her painting and writing.

Although Marian was initially shocked and grieved on learning about her condition, she kept active. She traveled to India by herself twice, and interacted with beggars, street cleaners and street children to learn about their lives. She wrote a 50,000-word story about her travel with a trembling hand.

What fascinates her friends is her ability to find immense joy in every little thing she sees and does. She turns every incident into a positive experience. A repetitive event isn't boring for her, instead she sees it evolve into other fascinating incidents.

Her approach is in stark contrast to many Parkinson's patients apocalyptic outlook of life. The disease gives her a sense of urgency as it heightens awareness of her mortality. She is determined to live every minute as actively as she can.

"I have only one life, so I have to get out there and live my best," she explained earnestly when I asked her why she didn't lead a quiet home life like other patients.

"Parkinson's hasn't change me very much, except to slow me down physically. I can't walk as fast as before, but I can still get involved in many things. I don't want to hide in a corner and fade away."

Marian has coped with her disease by writing more. Her series of children's books, published by Arus Intelek in Kuala Lumpur, are her best. Her story series, From My Window, detailing community life in Kampung Keramat, is kept in a New Zealand Museum.

Another way she copes is to draw energy from other people. Marian joined the Malaysian Parkinson's Disease Association, became a committee member and initiated a phone-tree programme for members. She called up members including those who were outstation, and shared with them the frustrations of living with Parkinson's. She told Parkinson's patients to stop thinking about what's wrong with them, and instead, achieve something new. She found helping others extremely satisfying.

As a member of various associations in Kuala Lumpur, she had a network of multi-racial friends from all walks of life. She helped them find jobs and get business contacts and be socially fulfilled. Marian helped a divorcee friend who was broken-hearted regain her strength.

Lift dealt her another blow when she had a hysterectomy in which a 907g (2lbs) fibroid was removed with her uterus. Instead of complaining about pain, Marian found tremendous humour in the fibroid stored in a Milo tin. She created stories about it, effectively changing everyone's gloomy view about surgery.

She also recorded the street happenings she saw from her window at the hospital and her interactions with patients and staff. While recuperating at home, her notes translated into a humorous and touching story about her hospitalization.

After Marian recovered from the surgery, she continued to explore Kuala Lumpur, she either walked about or took minibuses.

"I love the smells and the wetness of markets. I love exploring the side streets in the city, finding things I've never seen before and talking to the locals about their lives. There are so many interesting things to do and see here. I've walked around Jalan Masjid India and China Town so often that the people there know me."

She was excited when I visited her at her apartment. She opened her photo albums and showed me street scenes of Kuala Lumpur.

"I've walked everywhere, including the dusty, muddy areas around mega-construction sites," she said.

As she related her adventures in each photo, she showed me the "treasures" she had collected from these places. There were utensils, household items and artifacts which she had found on dusty shelves, cluttered corners and cupboard bottoms.

"See th jagged edge on this spoon. You can tell a story about how the cook chipped the spoon in her kitchen," she said.

Her exuberance increased when she spoke about the minibuses.

"Usually I don't get a seat but one time, a young man offered me his. I must have looked so old that he pitied me," Marian chuckled.

"Minibuses are often so cramped and there's a lot of pushing and jostling. And here the passengers exhibit colourful characters. I figure out marvelous stories by just watching them interact!

"Just recently, a minibus diver swerved the bus dangerously while smoking and carrying on a shouting match with the conductor. The speaker at one corner was blaring out a rock song Give it to me baby! Give it to me baby!

"The veiled woman who was near me stared blankly out of the window. She was oblivious to the goings-on around her. My knuckles went white from gripping the bars, but even then I thought, "What a lovely experience!"

The excitement in her eyes belied the physical anguish she must have experienced to balance herself standing in a crowded bus.

Her descriptions were full of positive words like "wonderful", "great" and "lovely". Until then, I had never thought warm, smelly, noisy bus scenes could be transformed into interesting story settings.

When she told me about the community life in Kampung Keramat which she observed from her kitchen window, I was so touched by her vivid descriptions and her will to get rid of the disease from her mind and fill it with the wonders of the world.

Her eyes flickered as she narrated stories about an old man who went to the mosque daily, a short-tailed cat which chased mice around the area, the women who did their daily chores outside the wooden houses, and a sparrow family's tragedies and joys.

Since then, she has inspired me to inspire others. I told several handicapped persons and abused wives about her mental strength. They are now slowly changing their views of life.

A year ago Marian and Michael returned to New Zealand. Michael has built a house with doors wide enough for wheelchairs to pass through. Marian is planning to invite all her Kuala Lumpur friends, the able-bodied as well as those in wheelchairs, to visit them.

A recent handwritten letter from her shows she is still full of zest.

"I am still painting and writing. When I can't use my hands, I'll use my mouth to hold the pen or the paintbrush. I am slower than before but I'm OK. Life is great because I can see so many green trees and singing birds from my windows. And the sky is very blue!"

Extracted from "Berita Parkie" Sept-Oct 1999 Issue, Bulletin of Malaysian Parkinson's Disease Association.

(Note: Marian A. Lough was a committee member of the Malaysian Parkinson's Disease Association. She returned to New Zealand with her husband around the early 1998).