Leper – the very word is apocalyptic. Biblical in connotation, leprosy is a cruel affliction – painless, true, but deeply disfiguring. Sufferers lose fingers, toes, noses, first to numbness and finally completely. Blindness, ulcers and amputations are common among its victims. At one time incurable, just like its sister tuberculosis, it has blighted the lives of countless people during its long history. Very few diseases have penetrated the public consciousness as this one has, becoming synonymous as it is with pariah or outcast. At Rajah Charles Brooke Memorial Hospital, out at 13th Mile, there is apparently a resident ghost. The story goes that she was a strikingly beautiful Orang Ulu woman, interned at the leprosarium there. Rather than face the prospect of the relentless march of the disease, she hung herself from a tree. At her request, her body was interred beneath the tree – the grave is still visible today – and she has supposedly never left.
Nowadays, the term leper is not politically correct. Leprosy sufferer is the modern substitute; perhaps we live in kinder times. But it wasn’t always this way. Originally thought to be hereditary, sufferers were marked out by special clothes or even bells. Strangely, it was on the scientific discovery that the disease was in fact caused by a bacterium, that mass panic truly set in. Suddenly it was contagious and the reaction was swift and serious. In the early 20th century in Sarawak, it became a reportable disease and identified victims were forcibly interned, leaving behind family, friends and futures. The first leprosarium in the state was established for 70 sufferers on Rock Road at 5th Mile, but increasing numbers of patients forced a move. In 1924, Satang Island was given over to a new colony where the inhabitants were effectively contained by the wide expanse of water between them and the mainland. Again, this was short-lived, the monsoon making supply runs impossible, and a year later they were on the move again.
Taken by Sarawak’s only train line to tenth mile, the colonists walked the final three miles into deep jungle. Here, they were on their own in more ways than one. Isolated by Mother Nature, there was little outside assistance. But human nature always finds a way. Here, they founded a community; they built residences and religious sites; children were born here and people died here. Graveyards dot the compound, one for each faith – Muslim, Anglican, Catholic, Buddhist, Taoist and Pagan – each standing close by its respective place of worship from Surau to Tua Peck Kong temple. There is the closeness of the community reflected in the dormitory blocks and yet evidence of its diversity, its residents drawn here after all by a disease and no other point of commonality.
The wooden buildings bear dates from the forties and fifties, named for people presumably long gone or well into old age. Prostheses and medical equipment at RCBM mini-museum.
Today, it is a charming setting of rolling countryside, shaded by trees. The wooden buildings bear dates from the forties and fifties, named for people presumably long gone or well into old age. Two enormous trees dominate the space, and a third which was felled in a storm lies on its side, covered with new shoots. Life tends to find its way. These are Chaulmoogra trees, also brought to this place from elsewhere but now flourishing in their new site. The ground beneath is littered with an unusual fist-sized fruit, its brown skin rough and scaly, cracked apart like scorched earth. Commonly used in traditional medicines, it is from this fruit that a cure was first synthesized. The provenance of the trees here is unknown but they have been standing for many decades until today, further evidence of the unique nature of this community.
Chaulmoogra was commonly used in traditional medicines but it is from this fruit that a cure was first synthesized.
For although the disease has fallen into history with the cure, this place is still alive for the sufferers. The staff is peppered with the descendants of the original residents and, in fact, there are 9 former patients staying here. For one current staff member, her feelings about the place are irreconcilable. She returns here everyday and yet she refuses to be named; she talks of it as home and yet, from the first moment she begins to speak, great tears well up in her eyes and course down her cheeks. This place where she was born stirs the full range of human emotion. She tells the tragedy of her mother, diagnosed and interned and so ostracized by her family. But within that, she recounts a great love story - of a man, her father, who would follow the woman he married to the ends of the earth; of a family whose love made them fight to stay together. Many of the children born to the patients were taken from their parents and banished to the Salvation Army home in town in search of a ‘normal’ life. So she tells how she and her three siblings hid from the daily inspection of 'Tuan Gregor' in the jungle, the cupboard, even the water tank in their bid not to be separated.
Caused by a bacterium, sufferers lose fingers, toes, noses, first to numbness and finally completely.
Her life has been hard. She remembers a hand to mouth existence, helping her father to collect kayu panchang to sell to the brick factories. She remembers the daily walk to school in Semenggoh surrounded by taunts of ‘Anak sakit teko’ – child of leprosy – as if the disease itself had sired her. But the reality is that she had a real mother and father, who lived, loved and lost like the rest of us, perhaps more than the rest of us. Her siblings have all left but she has remained. Now married with children of her own, she says her husband is a good man, he doesn’t mind about her history. As if there is a possibility that he should.
The Rajah Charles Brooke Memorial Hospital (RCBMH) set in charming rolling countryside bears stories of hardship of the Leprosy patients, their families and the stigma from the outside world.
One of the patients is proud to announce that he is 88 years old. He smiles broadly and constantly as he tells his story. He came to RCBM alone when he was just 13 years old. His parents sent him and left him. He has a brother and a sister, he says. He thinks that they live in Kuching but he isn’t sure - they have never tried to look for him. Actually, he did leave the leprosarium at one time and built a life in the outside world, tapping rubber, getting married, adopting a child; if no one else wants the child, he says, of course he will look after it. But the details of that time seem hazy to him – when, where, how long - as if this is his real life and that time outside is only a dream. He returned following a relapse but, though cured he has remained. This is his home, a happy place for him; he is sure on this point. After all, his family is all gone and here he has friends and he is looked after – he banters with the nurses as he talks. He will die here, he says with some certainty but with little regret.
Graveyards dot the compound, one for each faith – Muslim, Anglican, Catholic, Buddhist, Taoist and Pagan – each standing close by its respective place of worship from Surau to Tua Peck Kong temple.
At RCBM, there is a mini-museum. It is packed with memorabilia, a painstaking documentation of life there – newspaper clippings yellow with age, grainy period photos, medical equipment, prostheses, certificates of internment and discharge. But most striking are the handicrafts – a model longhouse, complete with tiny figures, delicate needlepoint, woven mats. These are objects of beauty and intricacy created by patients, many of them with missing limbs or failing sight. No matter what the scars of this dreadful disease, the beauty within remains. Love, family, creativity, responsibility, faith, dedication, hope, charity – they all reside here in this village.
Karen Shepherd wants to thank the staff at RCBM, especially Dr Goh Yi Xiong and Angelina Jong, for making this article happen. They are devoted to this place, researching its history and maintaining the Museum, and helped her to see the beauty in it too.