A hill of neglect, a saintly bull, and a tough fight

Lakshmi Narayanan | 10-January-2013

This is not a cock-and-bull story. It’s the story of a ‘saintly’ bull and a group of lesser mortals confined to a hill-based sanatorium in Thrissur, Kerala, by one of the world’s most dangerous diseases – Leprosy – and a split in family ties. The darker side of this story is unmistakably horrific, yet, we have tried to be as positive as possible. At least hope never abandons the needy. So, we begin with the crack of dawn and the birth of a new hope - the hope of deliverance from a life of agony.

By Lakshmi Narayanan

Just when a lush green hill spread over 110 acres in Mulayam village in Thrissur district of Kerala is ready to bathe under the golden rays of a brand new day, nine-year-old Manikantan is warming up to embark on his first trip of the day with a cartload of tiffin carriers to pull along. He seems lost in his own thoughts in the final stage of mastication, possibly making a mental calculation of an arduous journey that will take him to a cluster of cottages beyond a 20-acre vegetated area. He has been making this trip thrice a day for over four years now, just to deliver breakfast, lunch, and dinner to a group of people abandoned by their near and dear ones because of contraction of a deadly health condition called Hansen's disease, or Leprosy. Had there been any volunteers for this daily tiffin delivery service, Manikantan could have been spared from the labour. Thankfully, animals obey their masters, and Manikantan knows the drill quite well now. He halts before each cottage, shaking his head to make the bell around his neck clang and call out the inhabitants for collection of breakfast. The land strip in this part of the hill is undulated, but then, neither the ruggedness of life nor the nature can ever tame a strong-willed bull. He covers all the cottages in a short span of nearly two hours on a daily basis. After the drill, Manikantan gently retreats to the kitchen area, knowing well that he has to make two more trips later. On certain days, an old Leprosy patient accompanies the bull. But there’s no mistaking the fact that life is at the mercy of a bull! 

Welcome to Damien Institute, the only refuge for 82 people, including about 40 Leprosy patients and those who have failed to convince their near and dear ones about their recovery from the disease. The entire hill in Mulayam is a sanctuary of Damien Institute which has been healing, sheltering, and providing Leprosy patients with their daily bread, with a token annual governmental assistance of Rs 25 for each patient. A visit to this sanctuary also comes at a premium. The autorickshaw drivers have special charges for the sanctuary-bound as if that were a compensation for putting them at the risk of Leprosy. 

Damien: then and now

Set up in 1952 by Monsignor Paul Chittilappilly at Ayyappankavu in Mulayam, Damien Institute received financial support from the Kerala government and some missionaries during the early years. It started with four Leprosy patients, but within a few years’ time, the figure swelled up to 300, including patients from other parts of South India. When the numbers began to rise, Damien Institute developed a new system of Leprosy care, known as SET (survey, education, and treatment). It started providing free treatments for affected patients. But it soon became a neglected island of hope, with apathy setting in from all corners. Yet, nothing ever dented Damien management’s confidence. The number speaks for itself - till date, Damien has treated more than 20,000 patients.

Nature is in full glory at Ayyappankavu. A waterfall and a river add to the charm of this elevated green belt. But the pain arising out of the personal tragedies of the residents of Damien Institute far outweigh their zest for life. Today, Damien Institute owns the entire hill, including a few plots that were donated by the Kerala government. The majority of the hill is covered by rubber plantations, a perennial source of income for Damien Institute. A small bird house and a handicraft centre are the first things that greet a visitor. The beautiful wooden and wax sculptures speak volumes on the creative energy of Damien’s residents. 

As you venture ahead, you will be surprised to learn that the Damien scheme of things is well-structured. Damien Institute has an administrative block, a hospital with modern facilities, including an operation theatre and a laboratory, a church, a school, recreation centres, cattle farms, cultivable lands, cottages (given to cured patients), weaving units, cobbler units, and handicraft units.

“Damien Institute is blessed with all kinds of natural resources and facilities. However, the saddest thing is that its only inhabitants are people who have lost everything in their lives and a medical team that leads an equally silent life. The facilities of the institute, especially the hospital and church, is open to the general public as well since this is a remote area with no other medical facility. We provide 24-hour services with two experienced medical practitioners, Dr Ukru and Dr Nirmala Krishnan. But the locals are indifferent. They keep away, thinking that this is a place exclusively meant for Leprosy patients. The mere mention of the word ‘Leprosy’ is enough to fuel the fear within. I, too, had such a fear when I was appointed as the Director last year. But things have to change. People do not know much about Leprosy. They should be educated about the disease. Otherwise, Damien Institute as well as others who tend to Leprosy patients will always be treated like the Molokai Island in the Hawaian archipelago, US, which became a permanent quarantine area of the Leprosy-affected in the 1860s. How can we afford to ignore the narrow public outlook towards this disease when India is one of the ten countries with the highest Leprosy patients?” asks Rev Fr Antony Mechery, the Director of Damien Institute.

About a decade ago, there were about 500 patients here. In a few years, the number decreased to a little over 100 with effective treatments and low mortality rate. As of today, there are 85 patients. Of these, 52 are permanent residents, including 30 females and 22 males.

The Damienmedical team conducts free check-ups every month through a mobile clinic in various parts of Thrissur district to ensure there is no spiral in Leprosy cases. The constant monitoring makes sense considering the fact that Kerala reports at least four new Leprosy cases each month, says Rev Fr Mechery, adding, this only underscores that the disease is still far from complete eradication.

Patients at Damien Institute are of two kinds – the first comprise those who have been admitted for treatment following diagnosis, and the rest (numbering more than 40) are the ones who have been abandoned by their near and dear ones owing to the fear of living with a carrier of the deadly bacterial infection. In fact, there are many patientswho have been with Damien Institute for the past 45 years. None of the families are even bothered to pay homage to relatives when they die. Because of this continued neglect, caretakers at Damien Institute crematesuch people at a cemetery within the premises.In the past one year, at least five patients have died, including a 60-year-old patient who spent 14 years of his life here.

Self-sustenance in the face of rejection by society

The behaviour and attitude of those in the mainstream society towards Leprosy patients have always been fed by fear, abomination, and the overly cautious mindset of keeping a safe distance. It may seem that the victims of Leprosy have sinned greatly and there’s no way they can hope for redemption. Their total rejection by society had prompted the Damien management to think of a workable formula of self-sustenance and rehabilitation, says Rev Fr Mechery.

“Since Damien Institute had been into agricultural activities since inception, it was just a matter of creating separate manpower units for crop cultivation. In addition to this, weaving, basket-making, and handicraft-makingwere initiated as self-sustenance models for the Leprosy patients during the 1980s. Gradually, they were also trained to run cattle farms,” says Rev Fr Mechery.

The self-sustenance model soon ran into rough weather, with Damien management unable to find takers for its agricultural products in the market just because they were produced by Leprosy patients.“I don’t know why the public is behaving like this. We have been treated badly. That is how the handicraft and agricultural items produced by the Leprosy patients were strictly being used for in-house needs. Today, we have a handicraft unit where we have displayed the items made by the patients. And the crops, such as plantain, pumpkin, ladyfinger, ash gourd, snake gourd, and bitter gourd, are being used for self-consumption. Since we had an excess of agricultural goods, we scaled down our activities a bit over the years,” adds the Director of Damien Institute.

Life at Damien Institute

Damien Institute provides cottages for those recovered from Leprosy. There are 20 to 25 cottages in the Damien campus. Each cottage has one room, a kitchen,a verandah,and a beautiful garden

Each day begins at 5 am with prayers, followed by medical check-ups, a physical warm-up session, and breakfast. Then, the patients head for the fields. None of the patients are forced to work since they are not as physically fit as normal people.“Though agriculture is not financially viable, the management gives each patient-worker a daily wage of Rs 174. The institution provides all kinds of free treatments and healthy food, as directed by the physician. The weekly menu includes eggs, meat, fish, and vegetables. The expenses are met by the income generated from rubber plantations and funds from the Leprosy Association of the UK. The Kerala government gives us an annual token assistance of Rs 25 per patient, while we spendRs 45,000-50,000 per patient on a yearly basis.The government should at least provide medicines at subsidised rates,” says Rev Fr Mechery.

Treatment and rehabilitation

Usually, patients lose their immunity power because of disease progression. They are susceptible to other diseases and body disorders because of this.In particular, between December and February, the majority of patients are affected by cold-related problems. They become bedridden with fever and accompanying illnesses. This happens every year. The number of deaths also rises during this time. This is when patients require more laboratory tests. But the local laboratory authorities refuse to test the fluids of Leprosy patients at their facilities. That is precisely why Damien Institute set up a well-equipped laboratory within its premises. It is openfor the general public as well, but only Leprosy patients turn up for the tests.

Patients who recovered from Leprosy but have nowhere to go could not be accommodated in the hospital premises. If that were the case, many would have succumbed to a psychological syndrome that they are still suffering from the disease. Purely out of love for such people, Damien Institute started providing separate cottages for them, enabling them to lead anew, peaceful life. There are 20 to 25 cottages in the Damien campus. Each cottage has one room, a kitchen,a verandah,and a beautiful garden. However, cooking is not allowed in the cottages because these people need to follow a nutritious diet despite having made a recovery. That is why the food is delivered to them from the institute’s main kitchen three times a day. These people also take part in agricultural activities and are paid for that. 

Extremities and solutions

“When the disease progression reaches a critical stage, a patient may lose his toe, fingers,or feet due to the rapid decaying of flesh. We provide a special type of leather shoes for patients following dismemberment or amputation. This not only enables them to walk, but also saves them from further immediate spread of disease to other parts of the body, thanks to the saturated and medicated leather. We have a unit that manufactures artificial limbs. Patients themselves are part of the production process. Nowadays, we are getting orders for artificial limbs from the nearby hospitals. So, if they can accept artificial limbs made by the Leprosy-affected, why can’t they also accept our handicraft and agricultural items? I don’t understand the logic behind this selective behaviour,” says Jose, the Manager of Damien Institute. 

Other facilities

Other than free treatments and provision of shelter to the patients, the Damienmanagement also extends support for their dependents. It provides educational scholarships for their children, helping them pursue professional courses. Damien Institute is ready to absorb these dependents in its workforce once they complete their studies, but so far, no one has come forward to avail of this opportunity. Besides, patients are allowed to visit their home if they wish to, and their relatives are also permitted to visit them. But there has been no change in the mindset of the next of kin of these patients. So, they continue their stay at Damian Institute.

The Damien Hospital

Established a few years after the inception of the Damien Institute, the Damien Hospital is equipped with all modern facilities that are required to meet the multiple needs of Leprosy patients. The management has been making timely facility upgradation. As of today, the hospital has an operation theatre, X-ray rooms, laboratories, anda pharmacy. It has the capacity to provide treatments for more than 100 bedridden patients at a given time. It has two separate wards for male and female patients, each consisting of 50 beds. Those who need special care and attention, or are at the last stage of their disease are given separate rooms. 

The hospital also has a mental rehabilitation centre called ‘Shanti Gram’, supportedby the Kerala government. At present,more than 20 patients are undergoing treatment at this centre.

In all, about 40 patients are undergoing various kinds of treatment atthe hospital. The medical team, headed by Dr Ukru and Dr Nirmala Krishnan, holds daily interactions and routine check-ups.They are supported by eight Sisters, who are available round-the-clock on a rotational basis. Sister Jaceentha heads this team.

“About two years ago, there were about 200 patients at the hospital.Now, the number has decreased. Bedridden patients are given special attention by our volunteers. We try to make them happy by giving them access to television and other recreational activities. The patients here remind me of the painful past of the Molokoi Island. Many of themdo not have any interaction with the outside world. They have spenta major part of their life here. Being orphaned is much more painful than the disease itself,” says Sister Jaceentha.

About Mycobacterium leprae

The Damien management always maintains cleanliness and hygiene in the hospital premises and the immediate surroundings. Otherwise, it may increase the chances of infection. Mycobacterium leprae, the bacteria which causes Leprosy, spreads through blood, saliva, abscess, and other body fluids, including sexual fluids. It is a very slow-growing bacteria, similar to the one that causes tuberculosis.

There are three types of Leprosy. The generalised form, Lepromatous, attacks peripheral nerves, the skin, the hands and feet, the mucous membranes (such as the lining of the nose), and the eyes. The Tuberculoid form is localised. Its effects are less widespread across the body. The third type is known as borderline or dimorphous Leprosy. It has characteristics of both other forms.

Unsung hero

Recently, a Sister of Damien Institute died following contraction of the disease while tending to patients. None in the media reported this.

Next course of action

Damien Institute plans to build a park named after Saint Damien de Veuster, where the story of this great man will be retold through wax sculptures depicting each phase of his life. “The main objective behind this initiative is to end the public boycott of Leprosy patients. Society should give them a chance to lead a dignified life,” says Rev Fr Mechery.

Global initiative

The world is set to take new pledges on the World Leprosy Day on January 29 this year. We just hope Damian Institute’s residentswould have a reason to smile.

Hope for the hopeless

Muhammad

“I am happy. I have led a peaceful life at Damien Institute. I can’t think of a life beyond these walls. Being a Leprosy patient doesn’t mean the end of life. I still have a life, and I want to put it to good use by spending valuable time for the people like me at Damien,” says Muhammad.

For the past 45 years, Kunju, 63, has been with Damien Institute. He was brought here by natives of Coimbatore, Tamil Nadu, for treatment of Leprosy at the age of 17. He knows nothing about his parents or relatives. During the initial phase of his treatment, Kunju was indifferent to the Damien management and doctors. After many years of treatment, he recovered. Because of language barriers, the management couldn’t educate Kunju. He is not the talkative kind since he has a serious hearing problem. Yet, he is enthusiastic about any job he undertakes here. Ready to serve anyone, anytime, he hangs around the Director’s office for instructions.  

Babu

Babu, 52, is a native of Thrissur, undergoing treatment for Leprosy at Damien Institute for the past few years. Family has always been the soul of his life. But he lost his soul when he contracted leprosy. Over a period of time, he recovered from the disease. And recently, he told the Director of Damien Institute that he will be going for his daughter’s marriage. Excited, he purchased gifts for his dear girl by spending all the money he had earned from his labour in the Damien fields. But his wife and relatives turned him away, saying that if the bridegroom’s family comes to know about his disease, they would cancel the marriage. The groom’s family had been told that Babu was long dead. The man is yet to recover from the shock, but he’s still happy with the family he has already earned at Damien.

Nani

Nani, 55, has been with Damien Institute for the past ten years. When she recovered from Leprosy, the Damien management approached her relatives, pleading for her acceptance by the family. But her daughter and son said it would affect their social status and endanger their health. When the management informed Nani about this, she never shed a tear. Instead, she asked the management to give her a chance to make a new beginning in life. Today, she’s a part of Damien residents.

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