THE BIOGRAPHY OF MY SISTER – ONSET OF THE DISABILITY

In document THESIS SUBMTTTED IN FULFILMENT OF THE REQUIREMENTS (halaman 193-197)

The story unfolds with a quick look at my sister’s early life, and how an unanticipated fall and a wrong decision landed her in the ranks of persons with disabilities.

181 8.2.1. The Early Stage

My sister was born on 19 January 1949. Our father worked as a chief clerk on a rubber estate and our mother was a housewife. The third child in a family of eight (including the parents), she had a happy childhood mingling and playing with the numerous children on the rubber estate. She attended the Junior Methodist Girls School in Kuala Lumpur from 1956 to 1961 and then proceeded to Form One at the Senior Methodist Girls School, also in Kuala Lumpur. Although I had not been born at that time, in my later conversations with my parents and those who knew her, my sister was described as an intelligent and caring person and always bubbling with zealous enthusiasm.

8.2.2. The Agonising Fall

In 1962, whilst in Form One, my sister had a fall while playing netball. Initially, it was mere aches and pains but one particular pain at the lower end of her back was rather excruciating. The fear of going to a doctor forced her to bear it without complaining, a move she would regret for the rest of her life. A few weeks later, she was down with a bout of chicken pox.

Whilst having the chicken pox one fateful morning, as she woke up to go to school she found that she could not get up. Not only could she not feel any sensation in her lower body, but she could not even raise her body up from the bed. She screamed for help, drawing our parents frantically to her room. They found that she could only move freely from the neck upwards whereas there was limited movement in her upper body and none at all in the lower part. In our culture, during the period when a person is having chicken or small pox, the person should not see anyone outside the family. My belief is

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that possibly it was an ancient practice to inhibit the spread of the disease, but the practice was given religious connotations to ensure that it was followed. Further consultation with a medium served to confirm that the practice was to be followed and that she should not be brought to a doctor in this state. Once the chicken pox had receded, she was rushed to hospital. After a gruesome three month stay, she was diagnosed as suffering from paralysis from a blood clot in her spine, which the doctors stated was surgically unsafe to operate on and remove. The active 13 year old girl was now bedridden and unable even to attend to her personal hygiene needs without assistance.

8.2.3. A Ray of Hope

During this terrifying journey, my pious parents had never lost sight of the Lord’s benevolence. They kept faith that as all doors towards her recovery were being slowly shut, the Lord would open a window. And He did. Correspondence with the doctors at Kottakkal Arya Vaidya Sala (a century old traditional medicine institution in Kerala, India) revealed that remedial action was possible.

However, they could only cure my sister if she was brought there. This was impossible, since my father could not take such a long leave of absence from work, and my mother could not leave the other small children at home and follow her. Most of all we could not afford it. Alternatively, they suggested that they could send the medicines over with detailed instructions on how they should be administered, and we could “treat” my sister at home. However, they could not guarantee a full recovery. With no other way out, my parents opted for this alternative, purchased the necessary medicines, herbs etc., and administrated them to her strictly in accordance with the prescribed instructions (which

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also entailed the preparation of special food which had to be consumed during that period). Though it took a toll on my parents, especially my mother since she also had to take of the younger children (including the researcher), she nevertheless dutifully followed the instructions. Her efforts finally bore fruit when my sister was ultimately able to sit up, feel sensations in her upper body and, slowly over time, was able to attend to her personal matters with no external assistance. However, her ability to walk never returned.

8.2.4. Life Nevertheless Goes On…

Through the years, and although unable to walk, my sister was able to drag herself on her seat throughout the house and also had a wheelchair. Although it could not be manoeuvred through the rooms of the house, it at least enabled her to sit at a table to have her meals. She did not remain idle, but instead kept herself busy helping out with the household chores such as cutting vegetables, sewing (with a modified sewing machine) and caring for her younger siblings; teaching them, combing their hair, dressing them up and putting them to sleep.

Accepting her fate, she continued to live in this condition watching others progressing with their lives knowing that hers had reached a plateau. Nevertheless, she was an asset to our parents in their twilight years: when the other children had flown the coop in search of lucrative endeavours, my sister was with them and assisted them in many ways. She attended to phone calls, gave insulin injections to our diabetic mother, read the newspapers for our father when he underwent an eye operation, made garlands for their daily prayers and handled an unending list of other things. We, the siblings, made sure that she did not feel useless, and all contributions to the family were channelled to

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her. Our sister literally administered the financial affairs of the family (e.g., she. settled all the bills, determined what groceries were to be bought and when, and even ordered the vegetables by phone giving the researcher sufficient funds to collect and pay for them).

This continued on for 40 years. My father and mother passed on in 1995 and 1997 respectively, but my sister still had her responsibilities to “run the family” and that kept her totally occupied. However, fate was determined that this complacency should end and dealt her a further blow in 2002 when it was discovered that she was suffering from cancer of the rectum.

In document THESIS SUBMTTTED IN FULFILMENT OF THE REQUIREMENTS (halaman 193-197)