I will never bow to fatet

Chuah Gim Tuan occupies the first bed from the door in Female Ward No. CH4. Her case is one of the more severe ones in terms of the level of impairment due to leprosy. Despite persistent and uncontrollable tearing, due to malfunction of her eyes’ blinking mechanism and not having any fingers or legs, she keeps her bed and her “cosy little corner” clean and enjoys keeping herself well-groomed. During the interview, Chuah Gim Tuan was wearing a clean set of floral-print clothes and a beaded necklace. She speaks in a Hokkien dialect, tinged with a strong Indonesian accent.

Chuah Gim Tuan, the fighter who never gives up. (photo by Mango Loke)

Chuah Gim Tuan, the fighter who never gives up. (photo by Mango Loke)

“My father was a fishermen and my mother worked at home as a nanny. I am the eldest child in the family. I have two sisters and four brothers, but three of my brothers died of illness at a very young age and only one survived. As a child, I had got a head for numbers so I started selling pastries and cakes in the village to support my family, this was when I was 7 years of age. Every day, I would sell pan-fried pastries that are filled with either red bean paste or peanut, prepared by an older lady, so that I may earn some money for my mother.”

When Chuah Gim Tuan was 13, she developed irregular patches of red spots all over her body, so her family took her to a Chinese doctor and she was put on traditional Chinese medicines, but to no avail. Later, the doctor said that she had contracted leprosy. Since then, she scarcely went out and stopped selling pastries. Occasionally, her aunt would bring her to the temple to pray for blessings.

Regardless, for 7 years they continued treating her at home with traditional Chinese medicines, but there was no improvement and her fingers started to bend. Then, she found out that there was a boatman who would send leprosy patients to Sungai Buloh so that they could seek medical treatment. Her family then raised a few hundred dollars to get her a ticket so that she could come to Malaya for treatment. She was only 20 years old at the time.

“I went on the boat with another three patients and drifted at sea for three days and three nights before we managed to land ashore. As soon as we landed, the boatman hailed a car to bring us here. I only had a bit of money with me. ‘You can go home once you are cured. Don’t be afraid!’ the doctor told us when we arrived.”

Unfortunately, Gim Tuan’s wish to return home never came true. The sensory and motor nerves of her fingers had already been damaged at the time of admission. As a result, her skin had become numb and the muscles in her fingers were paralysed. However, the other healthy muscles continued to function as normal thus leading to contracture and deformity.

Chuah Gim Tuan thought that she could go home after her fingers recovered. Little did she know that lesions would develop on her fingers and ulcerate, bit by bit. The unsuccessful treatment blighted her life with unexpected sufferings and put her through more pain than the others.

Chuah moves around in her four-wheeled cart without assistance from the nurse. (photo by Mango Loke)

Chuah moves around in her four-wheeled cart without assistance from the nurse.
(photo by Mango Loke)

“The doctor gave me sulphone injections on Mondays and Thursdays. My fingers blistered, ulcerated and began to fall off. I was very sad. I asked someone to write a letter home for me to let my parents know that I was alright. I dared not tell them that my fingers had gone bad but simply said that I was cured. I was worried that it would break their hearts.”

It has been widely rumoured among the patients that leprosy would cause their fingers and toes to “fall off by themselves” but that is not the case. In fact, in many cases, what happens is the bacteria would attack the muscles of the palm, thus leading to weakened and contracted hands, and all this before receiving medication. Sometimes, the bacteria would also attack the bones in the fingers, causing them to shorten and deform. Then, the doctors would be left with no choice but to amputate a patient’s fingers in order to prevent the bacteria from spreading.

After her admission, her parents never came to visit her. A letter from home one in a while became her only consolation, slightly easing her homesickness. She never mentioned a word about how the treatment here really went and only wrote home with good news. After an in-patient treatment of two months, the doctor allowed Chuah Gim Tuan to move into a female chalet for eight, located in the East Section. She remembers the time when she moved in; the authorities only provided them with a mug, a bowl, a roll-up straw mat and three boards. Their life then was one of scarcity. While living in the chalet, Chuah Gim Tuan started cooking and preparing two meals a day for inmate workers, such as the “Kepala” (assistant doctors or what they were more commonly known as, dressers) and “Missy” (inmate nurses) who were working in the hospital wards, so as to foot her living expenses.

“The authorities used to distribute fresh rations for us so I prepared their meals. I cooked for four to five person and they would come to my place for lunch and diner every day, at 12 noon and 6 in the evening. Each of them paid me 4 dollars every month for this.”

She continued cooking and stayed in the same job for eight years. Later, she fell in love with a man named, Lim Cheng Lee, a dresser who takes care of patients in the hospital. The budding romance began as the two of them got along and supported each other in their daily lives, and so they decided to get married.

“I wrote to my parents and told them that I was getting married, and that my partner is employed and he could take care of me if anything happens in the future; I was very happy. My partner and I first registered our marriage at the Hokkien Association, but later discovered it was not recognised by the government. We consulted the Medical Superintendent and he told us to get our registration done outside so that our marriage would be legal. That time, I remember another two patients were looking to get married too. So, the four of us got into a car and went to the Selayang Marriage Registration Centre.”

After their marriage, Chuah Gim Tuan and her husband moved into the Marriage Quarters in the Central Section and started a new life. She said the government gave them nothing more than a rice cooker and they had to buy a wok for cooking. Nevertheless, the couple lived quite a happy life together, sharing their ups and downs and supporting each other.

Chuah Gim Tuan continued working after her marriage and would often neglect minor injuries as she could no longer sense pain in her hands. As a result, the infection went deeper and her muscle tissues were damaged. The bacteria began to attack the nerves in her limbs and her condition worsened.

“My fingers became very short and my right leg became painful and started to rot. So, I asked the doctor to cut it off and fit me with a prosthesis. My husband then made me a little four-wheeled cart to help me move about in the house, so that it would be easier for me to cook and perform house chores even when I am not wearing a prosthesis. He was very loving.”

Despite that, Chuah Gim Tuan worked hard after the amputation. She reared chickens and grew flowers in the yard. Many outsiders came to buy flowers from her and her business got better and better. She also grew plants such as the spider plant, money plant, ivy and peacock plant and so on.

Chuah showing us her Buddhist beads. (photo by Mango Loke)

Chuah showing us her Buddhist beads. (photo by Mango Loke)

“I cut young stems from these plants and grow them; they thrive very quickly and reproduce really fast. Each pot was priced at one or two dollars. They were selling so fast that I had no time to grow more! I fertilised them once a week and watered once a day. I once had seven customers buying flowers from me and that earned me more than 100 dollars a month.”

Unfortunately, their happy life did not last. Her husband passed away of illness when she was 56. Nevertheless, she chose to live alone in the chalet and work in the yard from dawn to dusk.

“Some people asked me to move to the Decrepit Ward instead of living alone in the chalet but I did not want to. I still had one leg; I could still sweep the floor, grow flowers and live independently in the chalet without relying on others. But then, my left leg began to rot too. My skin started to crack and the infection came back. The doctor gave me painkillers but I did not even cry. I could take a great deal of pain.”

Dr M. K. Bhojawni, who in the 1950s has helped many patients get their limbs functioning again through plastic surgeries, performed several surgeries on her too. However, the bacteria in her left leg were already spreading and she had no choice but to choose amputation, at the age of 60, in order to save her own life.

Over the 76 years of her stay in the settlement, only her youngest sister came to see her once. Chuah Gim Tuan’s parents never visited her. Later, she found out in a letter from home that her parents have passed – her mother due to colorectal cancer and her father, of old age. Then, she lost contact with her sister too. “When I had this disease, even my healthy limbs turned bad. People told me not to think too much and that everything is okay as long as I am alright. So I just stop thinking about it and then I am not so sad anymore. Some people commit suicide because of hardships but I hang on no matter how hard it may get, because the older folks have told me not to take that path. I tell others the same too – to stay and live on. We are all living together, we should be nice to each other.”

In just a flash, the young woman who came to the settlement due to the disease, is now in her seventies. A marginalised role on the stage of life, Chuah Gim Tuan was forced to separate with her family. Still, she told her story calmly, so calmly that we marvelled at the incredible mental strength she displayed, as we bore witness to the struggles she had been through in her life.

Every day, Chuah Gim Tuan supports herself with her two own hands, slides slowly into the four-wheeled cart her late husband made for her, and gently wheels herself to the bathroom at the end of the ward to take a shower. She does everything she can on her own, even making the bed and doing the laundry; only when it comes to drying the clothes would she get help from the hospital staff. When she has some free time, she would switch on the television on her bedside and watch something to while away time.

“I may have ‘cracking eyes’ but I can see even from a great distance. We live in the Decrepit Ward and the government takes care of our daily meals. We barely have to spend on anything and we eat whatever the government provides us with. The members of the Tzu Chi Merit Society visits us every month. They are really kind to us and I am very happy! They told me to be happy too and I have learnt to look at the bright side now!”

In Chuah Gim Tuan, I see tenacity, optimism and the power of positive thinking, which I believe is found in those who brave on despite the card they’re dealt with in life, and despite the immense amount of suffering they have endured. May her contented heart bring her true happiness!

Chuah in one of her quiet moments. (photo by Mango Loke)

Chuah in one of her quiet moments. (photo by Mango Loke)

Narrated by Chuah Gim Tuan
Interviewed by Chan Wei See, Wong San San & Tan Ean Nee
Written by Tan Ean Nee
Translated by Zoe Chan Yi En
Edited by Low Sue San

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