The unlikely fighter
Leprosy is a chronic bacterial infection disease that attacks primarily the skin, mucosa and peripheral nerves, and even causes damages to deeper tissues and organs. To this day, some of the ex-patients of the disease still carry the marks of disfiguration caused by Mycobacterium leprae (M. leprae), for instance, a collapsed nose bridge, claw hands, deformed facial features or amputated limbs. Such unusual appearances often make it easy for people to tell at first glance that a person is a former leprosy patient.
Having been moved around the leprosarium for many years, Nordin bin Abdul Rahim is by far the most serious case I have ever seen, in terms of the severity of disfigurement caused by M. leprae.
“My limbs were already in a bad shape before I was admitted to the settlement. I had this disease when I was 10 and only went to see a general practitioner during the early years because I had no idea what kind of disease it was. When I found out that it was leprosy, I did not come here for treatment because I was still studying. I may look like this but I do have a lot of friends, you know. I went to a secondary school in Bandar Jerantut. All my classmates were good-looking, “normal” people but they were never afraid of me. We ate together and played together. One day, when I was on the way home after school, an Indian started speaking to me in Tamil because he saw my dark skin. And I told him, laughingly, that I could not understand a word because I am Malay!” Nordin collapsed into laughter, rolling back and forth, covering his mouth with a fingerless hand.
To be honest, I was terrified by Nordin’s appearance when I first saw him in the hospital ward. My intention was to obtain some old photographs from an old gentleman situated across Nordin’s bed, however the moment I saw him I was unable to take my eyes off him.
His mother and younger brother were there as well on that day, visiting him from Pahang. His mother was wiping his face, while smiling gently; his brother was sitting by his side, setting up a smartphone for him. The mother and sons were having a cosy chat and there was a subtle sense of harmony in the air. I felt compelled to approach them and asked, after introducing myself, if it is okay for me to have a chat with Nordin.
“Sure!” His brother moved a chair over for me. “Have a sit.” His mother remained by his side to keep him company.
Then, Nordin proudly introduced his brother to us, “He is my brother, Mohammad Firdaus. He has just graduated from the university and is now looking for a job. All of us brothers are very close. We do not see any differences between us and we do not compare. We love each other.”
“I studied Form 6 in a religious school and Islam teaches us not to discriminate against those who have a different religious belief, appearance or skin colour. Surely, we must neither reject someone because he is sick. That is why everyone in our village loves me very much. Our parents brought us up well. We love our family and we are very close to each other.”
Nordin’s father, Abdullah Rahim bin Mat Isa, is a well-respected secondary school teacher and his mother, Zaharah bt Idris, is a housewife. He was the eldest child in the family. He had one sister and six brothers. I turned to his mother and asked what teachings had she passed on to her children.
“I told my children: We must work hard for a better life and never forget about Allah. Someday, when we become successful, we must not forget those who have helped us along the way. I want my children to be good, work hard and stay away from bad habits.” She looked at Nordin, her eyes full of love. Before she left, she gave Nordin a hug. She kissed him on his cheek and stroked his hair gently.
Nordin and I became good friends later. He often gave me a call just to catch up on what I had been up to and we talk just about everything. One day, when I returned to Penang for a couple of days, he called and asked me to get him a T-shirt, printed with a Penang beach on it. I asked him what colour he would like it to be and he answered cheekily: ‘Aqua blue and white!” I could hear him chortling over the phone.
When I brought two T-shirts for him, he immediately asked me to help him try them on. The matron who happened to pass us by saw this and teased him, “Don’t you have enough T-shirts to wear? Huh? You are just teasing Ean Nee because you know she can never say no to you!” He admitted. “You are right! That’s because she cares about me.” We both burst into a loud guffaw and took a picture together.
Nordin was, in fact, fully cured two years after he was admitted for treatment. In 1985, Nordin turned 24 and became an animal attendant at the settlement’s animal house, where he was in charge of keeping mice, with a monthly work allowance of RM144.75. At the time, he said, the doctors and researchers at the Research Laboratory of Sungai Buloh Settlement were also using monkeys as their subjects in experiments. Skin tissues with bacteria were often collected from patients’ wounds and injected into the monkeys. Later on, the bacteria were also injected into mice. Subsequently, the subjects were periodically injected with anti-leprosy drugs in order to test the efficacy of the drugs by monitoring the corresponding reactions.
“The mice were provided by the Institute of Medical Research in Kuala Lumpur. Our unit had seven members. Only Lim Yu Tiong and I were inmate workers, the rest were all public servants. My job was to feed the mice regularly, clean the cages that housed the mice and also the animal house. I did that for 16 years. My superior Dr Kamariah offered me plenty of opportunities because I was a good fit for the job.”
Nordin lost all of his fingers and his face was seriously disfigured, but he was not daunted. Instead, he braved through the challenges in life and in the small laboratory, stood firmly in his own place, conveying a paean to life with remarkable strength.
“I worked from 8 to 12 and then carried on after lunch from 2 to 4. In 2010, I was admitted to the hospital for surgery because of a bacterial infection in my right eye, when I was forced to have it removed. Then, I became blind.”
By the time I got to know him, the vision in his left eye was gradually blurring and he could no longer work. However, he still reads the news on Malaysiakini’s website each day. His uncle also sends him two copies of Harakah Daily every week. He pays close attention to Malaysia’s politics and always goes out to vote in every general election.
“We must change. A democratic country needs a powerful opposition party. We cannot just sit back quietly and wait for changes to take place. I come from a rural area, so I know how hard life is for the rural communities and I know what makes the rural areas backwards-looking. There is an inadequate provision for infrastructure. It is difficult for children to attend school and all the prices are going up. Many people are still suffering. We must be open-minded and bold. We must all stick together to help our country flourish!” Nordin might have become a passionate spiritual leader if he had been healthy, I wondered as I listened to him.
Nordin might seem thin and fragile, but he was high-spirited and very talkative when he speaks of his favourite poets, Usman Awang, A.Samad Said and his idol, Adibah Amin.
“A. Samad Said’s novel Hujan Pagi is my favourite. And his poem Benih Harapan. We must defend our freedom of speech. We must show a deep respect for justice and fight against brutality and corruption. We should be fearless in defending the truth!” In fact, Nordin cannot be more qualified to play the role of a victim. Yet, what he demonstrates is a charming, easy-going and happy character. What a beautiful soul he is!
I admire Nordin’s strong will, his courage to stay fearless in the face of hardship and danger, and his open mind and broad vision. Nordin passed away two years ago but I have always been glad that I have had the privilege to write down his stories in time. He shattered the stereotype I had of the disabled in general. I have come to realise that a person’s strength can never be determined by appearance alone, for true strength does not spell itself out loud.
Narrated by Nordin
Interviewed by Tan Ean Nee
Written by Tan Ean Nee
Translated by Zoe Chan Yi En
Edited by Low Sue San