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A Wrestle with Leprosy

30 Jan

When we were medical students (in the early 1980s), leprosy patients were ubiquitous, found at every street corner, train station and bus stand with open sores and deformities, spending their lives begging from passersby. As we passed through college, we learnt that leprosy (or Hansen’s Disease as it was also known) was caused by Mycobacterium leprae, an acid-fast bacillus similar to the one that causes tuberculosis.  The disease affects the skin and nerves and causes skin lesions, loss of eyebrows and lashes, corneal damage, blindness and a host of deformities – most of them secondary to loss of sensation and resulting injury to the insensitive parts of the body (1). The disease is completely curable without any deformities if diagnosed at an early stage. However, the majority of patients at that time never came on time – they did not tell anyone about their lesions, hid their deformities and when it was finally diagnosed, kept the diagnosis secret. This was because of the horrible stigma and fear attached to the disease. No one wanted to be seen with a leper, leave alone have one in the family. This was because this ancient disease (with many references in the Bible) did not have a cure until modern chemotherapy arrived and untreated patients developed grotesque deformities and non-healing wounds. Leprosy patients were herded into colonies, in effect open jails, where they were admitted by their friends and relatives, to spend a lifetime and die unknown. The theory behind the colonies at that time was sound – leprosy could only be transmitted by prolonged close contact and since it was incurable at that time, the best way to limit its spread was to quarantine all known patients and segregate them (2).

In 1993, my wife Ann and me joined the Makunda Christian Leprosy and General Hospital (3,4). This hospital had just become a member of the Emmanuel Hospital Association (EHA) (5). In 1935, Dr. Crozier, a Christian medical missionary from the Baptist Mid-Missions in USA had started the Alipur Mission Hospital near Silchar (later named the Burrows Memorial Christian Hospital). Soon many patients started to come for treatment and among them were leprosy patients. Unable to admit them (for fear of infecting others and the all-pervasive stigma), the missionaries searched for a large piece of land to start a colony. In 1950, such a piece of land was found, 1000 acres of land in the other end of the Cachar District (now Karimganj District) was being sold by the widow of a man who had purchased the land hoping to convert it into a tea-estate. The land was purchased (at present the hospital has only 350 acres of land, the remaining having been taken over by the government), and a team of mission staff started to develop the land, build homes for the staff and wards for the patients, aluminium Quonset huts (6) for the sick ones and large Assam type barracks for the others and develop a large farm to feed the rapidly growing colony. The result was a completely self-sufficient leprosy colony housing about 300 patients. Almost everything was grown on the campus – rice, fish, poultry, oil (from mustard seeds), cotton and silk for clothing, timber and bamboo for housing, sugar (from sugarcane), dal and vegetables. Only salt was purchased from outside. Leprosy patients were brought from everywhere – including all the northeast Indian states and surrounding countries. An American surgeon, Dr. Gene Burrows, joined the hospital and started general medical work (in addition to leprosy work). He started treatment of the leprosy patients, initially with chaulmoogra oil and later with dapsone. He did reconstructive surgery on those who had correctable deformities. Patients whose families were willing to keep them at home received treatment in mobile camps. Unfortunately, in the early 1980s, Dr. Burrows and all the expatriate staff were asked to leave India, never to return. The hospital remained closed till we joined, a decade later.

Our early days at Makunda were tough (7), there were no general patients, they came in small numbers in the initial weeks and months. All our time was spent examining the 60 leprosy patients, the remnants of the original colony, many of them staying since the time the colony had been started. They were being treated with all sorts of regimes by a few old staff, some with the old chaulmoogra oil, some with dapsone alone and some with dapsone and rifampicin. We examined each patient and started the modern Multi Drug Treatment (MDT), a 2 -year course of rifampicin, clofazimine and dapsone on those who needed it. Some patients with deformities were sent to the leprosy hospitals in Calcutta (8) and Tinsukia for reconstructive surgery and prosthetics. Ann spent hours cleaning and dressing wounds, applying plaster casts till chronic wounds healed. I did a number of amputations on limbs which could not be repaired. Those who completed the full course of treatment were given “Released from Treatment” certificates and discharged, certified free of disease and allowed to go out into the world. Some patients, especially the older ones, refused to go (as they feared that they would be thrown out by their family) and they were allowed to stay on. We encouraged the young, able-bodied patients to leave and rebuild a life for themselves and slowly most of them left. We helped some to marry, get good jobs, delivered their children and buried them when they died. We had the privilege of being foster-parents to this large family of reluctant prisoners.

Life in the colony for the inmates was routine, like an informal sort of prison. Many of the patients had resigned themselves to their fate and lived happy lives, doing daily chores in the farm and hospital, organizing meetings for singing and prayer, games and recreation. They were provided free food and pocket money and all their needs were met. They did not have any ambitions, except to live out their lives in peace. A few were angry, rebelling against the unjustified imprisonment for no fault of theirs. Most of them were grateful to us and the other staff for providing them everything they needed. Leprosy was a great leveller, we had inmates who were highly trained government officers and skilled workers as well as unemployed ordinary people, they had all become lepers, united by being infected by the same bacteria. It was interesting to note the attitude of their families. If we wrote to them that their relative was not doing well, no one came to see them or take them home for a break. However, when one of the patients died, one (sometimes a number) of quarrelling relatives would invariably turn up to see what he/she had and collect it (usually a tin box with some cash and personal belongings) – they did not care for the body which we buried on campus! They were exploited by relatives, some politicians, unions and others to try to get land and possessions using their ‘status’ as leprosy patients – these people were not interested in them as individuals and were trying to get land not for the patient but for themselves after the patient died!

In 1997, Ann and me left for our postgraduate studies, me to do my MCh in Paediatric Surgery and Ann to do her MD in Anesthesia at the Christian Medical College at Vellore (9). After completing my MCh, I joined as a Lecturer in General Surgery Unit-III under Dr. Booshanam Moses for a year. One day, I noticed an area of insensitive skin on the dorsum of my right foot and we went with a sense of foreboding to see Dr. Leishiwon Kumrah, our close friend and working in the dermatology department. She did a skin biopsy and the result was borderline tuberculoid leprosy. We knew that leprosy was contagious but never thought that one of us would get it. Ann spent more time with the leprosy patients than me but apparently developing the disease is dependent more on the body’s immunity (T-cell function) than on contact. Later, when we did Lepromin Tests at the big leprosy hospital in Karigiri, Ann was strongly positive while I had no reaction, showing that my T-cell function was poor and hers excellent. Now that we had a diagnosis and no deformities, I thought that I just had to take my course of MDT and I would be fine, not realizing that the worst was yet to come!

I was initially started on a new regime, swapping Ofloxacin for Clofazamine (10), to avoid the dark bronze pigmentation that occurs with Clofazamine. Within a few days of starting treatment, I became hyperactive, keeping Ann awake all night talking nonsense. We soon realized that I had developed psychosis due to Ofloxacin and I was put on the standard 2-year MDT of Dapsone, Rifampicin and Clofazamine. I had difficulty taking the medication but put up with it, counting the days till I would be free. A short time after starting the drugs, I developed swelling and pain of the right lower limb and tender thickened nerves. I was having a Lepra Type I (or reversal) reaction – and was started on steroids. I soon developed severe side-effects of the steroids, tremors, hypocalcemia, hypokalemia, acne and a sort of depression. Although life and limb-saving, steroids are horrible drugs. Some people tolerate them well but others (like me) don’t. They should be used very carefully. After my experience, my blood boils if I see anyone prescribing steroids inappropriately. We were soon back in Makunda. My mother (my father had just passed away) was already upset with me for going off to a mission hospital (to waste my life) and after learning that I had developed leprosy there and was returning to that God-forsaken place, she was quite sure that I must be mad.

When we got back to Makunda, life became very difficult. My close friend, Dr. Samuel Siddharth Swamidoss MD had very graciously volunteered for a posting to Makunda to relieve us to go to Vellore for 3 years – I don’t think anyone else would have wanted to go to Makunda at that time. Unfortunately, he was overwhelmed with problems and struggled to keep the hospital going – he was a physician and had to manage obstetrics and surgery with only one other doctor, besides a lot of administrative and legal issues all by himself. We took over a really sick hospital, with me still on MDT and steroids for my reaction. There was no money, enormous dues payable to a lot of people and no help from anyone. We wrote to many people, to our Association and to possible donors but there were only promises of prayer and demands to settle some of their bills! A number of serious internal problems came to a head at that time resulting in violence on the campus (me being beaten up), Section 144 of CrPC imposed, local people (sadly some former employees, leprosy patients and church members included) occupying the land and demanding that we leave. We (Ann, me and the junior doctors and some others) ploughed the land every morning with a power-tiller and got back control of the land. The trouble-makers then filed a number of false criminal cases against us (hoping that we would leave and allow them to take over the land). We spent the next two years attending court every month till we were acquitted. They also filed a number of labor court cases which kept me occupied. We had made a 30-year strategic plan and this was the middle decade when we were hoping to start major projects to impact local and regional communities. In the midst of all this confusion, we therefore started work on a new English medium school, a school of nursing and a branch hospital in the state of Tripura. It was an audacious move, simply trusting God to provide in the midst of so much uncertainty and most people thought that it was an unsustainable gamble. Through all this, my leprosy reaction subsided and finally my 2-year course of MDT was over. I still have the shiny patch of atrophied skin on my foot to show that I had leprosy and several nerves are still thickened but I am well again.

Looking back at the experience, I know that I got leprosy so that God’s name may be glorified. I never ask why He allowed me to go through all the problems – they are insignificant in the light of eternity, one of those temporary trivial inconveniences that every Christian is called upon to bear. God permitted it to happen to me and that is enough, I don’t have to ask why. To understand a disease from the patient’s perspective, there is no better way than to have the disease yourself. There were times when I wondered whether I would be able to operate again (paediatric surgery demands meticulous attention to fine detail) and when I would be free of drugs, disease and complications but I never doubted the presence of God beside me. Ann was a wonderful person to be with me through all these trials and I constantly thank God for giving her to me – what a precious, wonderful gift.

When leprosy became a major problem, the British government, enacted the Lepers Act, 1898 (11) which provided for the arrest of any person who had leprosy and their incarceration in leper asylums. Along with it came numerous other laws that discriminated against leprosy patients – if you had leprosy, you could be divorced, kept out of jobs and public services etc. Over a hundred years later, even after leprosy became curable and the colonies ceased to exist, some of these laws are still in force, although the main Lepers Act was repealed in 1983. We were told that leprosy was eliminated (brought below the elimination threshold of an arbitrary prevalence rate of 1: 10,000), people started to become complacent and we are now told that the disease is slowly making a comeback (12), with many new patients presenting with disability for the first time as well as presenting in childhood. Aided by a slow natural course and a natural resilience, it is a tough disease to defeat and we could be in serious trouble indeed if adequate timely action is not taken. Leprosy caregivers getting the disease is not new. In the years when the disease was incurable, there was the famous story of Father Damien of Molokai (13), living and caring for leprosy patients, who soon developed the disease and became one among them.

Today (30th January, the death anniversary of Mahatma Gandhi) is Anti Leprosy Day in India (the rest of the world commemorates World Leprosy Day on the last Sunday of January). I am grateful that I lived in a time when the disease was overcome, when it was just an inconvenience and not a life sentence. We must be ever grateful to many scientists and pioneers like Dr. Paul Brand (14) who toiled to find a cure and rehabilitation for those suffering from this scourge and to organizations like The Leprosy Mission (15), AIFO (16), Gremaltes (17), American Leprosy Mission (18), the Missionaries of Charity (19), the government and many others who provided care and cure for the disease – for some years our leprosy work was partially supported by AIFO and The Leprosy Mission.

But for the grace of God and the timely discovery of a cure, I would have been a leper in a prison too. I had a myocardial infarction some years later (20) and now live with an ejection fraction of 30% – I could have easily died that day in 2008. God has taken me through many trials but kept me alive and able to work hard and remain productive. Many of us wrestle with our demons. For some they are sickness, like leprosy, HIV, mental illness and cancer; for others there are issues with parents, spouses and children, each one has his/her own ‘thorns in the flesh’ (21) but we can all find peace and reassurance in that beautiful verse in the Bible, Psalm 37:24, “Though he fall, he shall not be utterly cast down, for the Lord upholdeth him with his hand” (22).  I know that God in His grace has given me many second chances and value every moment I am privileged to live and hope that everything that I think, say and do finds His approval and that when my days in this world are over, I would be welcomed back as a good and faithful servant who accomplished the task given to him.

 

 

References:

 

  1. https://emedicine.medscape.com/article/220455-overview
  2. https://en.wikipedia.org/wiki/Leprosy
  3. http://www.makunda.in
  4. https://the-sparrowsnest.net/2016/02/19/short-video-of-our-work-made-by-emmanuel-hospital-association/
  5. https://eha-health.org
  6. https://en.wikipedia.org/wiki/Quonset_hut
  7. https://the-sparrowsnest.net/2018/05/12/early-days-at-makunda/
  8. https://www.leprosymission.in/what-we-do/institutions-and-projects/hospitals/tlm-kolkata-hospital/
  9. https://the-sparrowsnest.net/2017/09/13/obeying-a-call-to-medical-missions-a-testimony/
  10. https://en.wikipedia.org/wiki/Clofazimine
  11. https://www.legalcrystal.com/act/133845/lepers-act-1898-complete-act
  12. https://timesofindia.indiatimes.com/india/leprosy/articleshow/67689369.cms
  13. https://en.wikipedia.org/wiki/Father_Damien
  14. https://en.wikipedia.org/wiki/Paul_Brand
  15. https://www.leprosymission.in
  16. https://aifoindia.org
  17. http://www.gremaltes.in
  18. https://www.leprosy.org
  19. https://en.wikipedia.org/wiki/Missionaries_of_Charity
  20. https://the-sparrowsnest.net/2011/11/01/an-encounter-with-a-myocardial-infarction/
  21. https://en.wikipedia.org/wiki/Thorn_in_the_flesh
  22. https://www.biblegateway.com/passage/?search=Psalm+37&version=KJV

 

 

Early Days at Makunda

12 May

Medical work at Makunda was restarted on 3rd March 1993 (after about 10 years of closure). Ann and me had arrived in Silchar several days earlier but our suitcase containing all certificates and money had been lost – we recovered it 3 days later when a passenger (who had taken it with him to Aizawl) returned it to Indian Airlines. Hospital staff had created local awareness and publicity and the OP consultation room had been cleaned. One patient (a girl with diarrhoea) was admitted but very few patients turned up. The first day’s collection was Rs. 20/-. Over the next few days, some people turned up asking for home visits and I went with them (pillion riding on their bikes) to see sick people at home.

 

The slow start changed quickly when a patient was brought in labor from a forest village – she had obstructed labor and was quickly referred to the Government Hospital in Karimganj for a Caesarean section. However, when we went to the ward on our night rounds she was still there – they could not take her to Karimganj. The uterus was now tense with a Bandl’s ring signifying impending rupture. We did not want her to stay at the hospital when we were not confident of treating her with the facilities available but the relatives said that if we sent them out of the hospital, they would take her home to die. The operation room was quickly searched – linen autoclaved many years ago was found (still in its wrappings), instruments were boiled and a Caesarean section done (with two nurses holding kerosene lanterns for light) under local anaesthesia – infiltration with xylocaine. Blood was scooped out of the wound and the final stitches put in. The baby was sick (died a few days later) but the mother was alive – I remember her name, Sumvankhup. The news quickly spread – major surgeries could be done at Makunda – and we started getting large numbers of patients. Soon the next LSCS was done, this time with a live healthy baby – her name was Hoia Chorei. Elective surgeries followed – all done without the help of electricity or running water! – only those that could be done under local or spinal anesthesia. We had a Schimmelbusch mask for open drop ether as well as ethyl chloride but after a few procedures, were not very keen to use this technique.

 

We quickly did a complete inventory of the hospital. Many of the equipment (including gensets) had been sold in the past years to pay salaries. We were left with one working blood pressure apparatus, a large amount of assorted surgical instruments and old suture material. The pharmacy contained a large amount of chaulmoogra oil as well as dapsone and some other drugs for the leprosy patients, there were many barrels of “Sanimaster” – universal disinfectant. There was an ancient Picker 15 mA X-ray machine and a Bovie “Spark-Gap” cautery machine as well as a drum dermatome. The laboratory had a colorimeter and a microscope. There was ‘electricity’ from the government – a few hours of electricity with voltage so low that only the red filament of the bulb could be seen. We had been in correspondence with Emmanuel Hospital Association (EHA) in New Delhi and had received Rs. 10,000/- to start off the work. I thought that this was to purchase something that could not be locally bought and had invested it in a BPL Cardiart 108 ECG machine (I was very interested in medicine and cardiology although I had trained as a surgeon). Now, it looked like a foolish decision – there was not even enough current to charge the batteries in the machine! I sent a long list of the equipment that was urgently needed at Makunda to EHA and received a reply several days later – Makunda was an independent society that had to rely on its own income. EHA could try to raise some funds but there were needs elsewhere too. We did receive small amounts but soon realized that we were on our own…

 

When we first arrived, the local staff held a welcome for us at the local Church with paper garlands and told us that we were an answer to their many years of prayer. The leader of the church pointed us out during his messages in Bengali with murmurs of assent from the congregation. However, after the first few weeks, we realized that their hopes were to first get benefits for themselves – gifts, jobs, even land. We disagreed – all the staff (including us) lived in difficult conditions but we had come primarily to serve the poor people of the area and making our lives better was not the priority. Soon he was pointing us out to tell God that we were not being very helpful – we had to stop going to church and spent Sundays at home, waiting for the days when more like-minded staff would join.

 

The staff at the hospital had been receiving their salaries for years without any work. Now they rebelled at the expectation of work. There were a few nurses and aides – one was nearly blind, another deaf, another handicapped, we did not know the local language – it was going to be difficult to change this situation.

 

A lot of time was spent with the 60 leprosy patients – many of them had been in the hospital for decades. We quickly put them on modern chemotherapy and the fit ones were given, “Released From Treatment” certificates allowing them to mingle with the outside population. Many did not want to go, fearful of stigma – we slowly convinced the able-bodied ones to leave. The staff quarters were far away from the leprosy wards and many of the leprosy caretakers were themselves leprosy patients. This was with good reason – in the past leprosy was incurable. Having been taught that it was just an ordinary bacterial disease curable with drugs, we did not worry about contagion – until some years later when I developed leprosy and then went through two years of chemotherapy, severe reactions and drug induced problems. It was a painful reminder that we are not immune and cannot afford to be careless.

 

Supplies soon ran out and we went to Silchar to buy more – we soon realized that dues were outstanding with most shops. All of them wanted cash and we spent hours going in and out of all the wholesale drug stores looking for the best bargains. I was the pharmacist and store-keeper and had to learn quickly to maintain the right amount of stock. We went once a month, on a Saturday evening, bought our medicines, spent time with Christian medical students at the Silchar Medical College, a night with one of the officers of the Baptist compound in Silchar and returned the next day. At Makunda, we were soon engulfed in legal and land problems which we did not understand. We did not know who was a dependable person and who was not. We did not understand why documents were worded in the manner that they were. It took many months of visits and talking with many different people before some clarity appeared and we could understand what was happening within this community. We could not understand how people could be so violent and hostile just to get land and property illegally – many criminal cases would be filed against us in the years to come in an attempt to get rid of us but we did not know it at that time – it is good that each day is revealed in its time!

 

Life at home was also a different experience. When we started work, Ann and me had been married for a little over a year. She had done her MBBS and I had completed my MS. We had a combined salary of Rs. 2000/- per month in Madurai and now at Makunda this had doubled! When we arrived, we were allotted the Doctor’s Bungalow – 3rd Bungalow – connected by ‘party-line’ intercom to the hospital and other Bungalows. There was a wood-burning stove in the back in a separate kitchen. We quickly invested in a kerosene stove. It took a long time to get a gas connection – only one cylinder would be given after waiting for many anxious hours at Karimganj. There was no electricity at home but we had kerosene lanterns and hand-fans. We hoped this would change quickly – it did, 14 years later! Water was carried to our homes at Re.1/- per bar of two 15 liter cans. This was muddy water from the fishery ponds, we allowed it to settle or used alum to clear it. The weather could be quite cold – we could not afford the warm blankets in the shops or it could be really hot and humid – we just prayed to God to turn on his ‘airconditioner’ – for the rains. There were cement tanks in all the toilets and as soon as the sound of rains was heard, both of us ran out to fill these tanks with buckets – clean water which was free! There were colorful birds and butterflies as well as tarantulas and snakes – Ann found a bamboo pit viper in our hall one night when we returned from hospital. Communication was difficult – the nearest phone was in Karimganj, 50 kms away on a really bad road (often blocked completely by floods). When we reached Karimganj and placed our ‘trunk’ call, it would often not go through and we would return without talking. Talking on the phone was not very encouraging – many friends and relatives thought that we were quite mad! Telegrams arrived many days after the incidents that they described. Many small inconveniences – but temporary and trivial compared to eternal life with God in heaven – we should learn to look at them from a heavenly perspective.

 

This is just a short glimpse of life 25 years ago. It was what we had expected when we signed up with God to go as medical missionaries. At the EHA (Emmanuel Hospital Association is an Association of many independent hospital running societies created in the 1970s to support several Christian mission hospitals which were teetering on the brink of closure following the departure of expatriate missionaries) office in Delhi (in October 1992), we had given a 30-year commitment to work at Makunda till retirement and we were planning to keep our promises.

 

The early life at Makunda was full of surprises – we looked forward to the future not knowing what it would bring. Would we be able to stay on? There were threats – could we be beaten up or even killed? It was also full of promise – God’s promise that He was with us. He had given us a vision of a great work that would transform communities in the future, only visible through God-given eyes of faith! Our human eyes could only see it as an impossible dream. We do not appreciate God’s presence until we are vulnerable and helpless. Our obedience was our duty, the results were His. He had promised to take us by our hands and lead us one day at a time. Most of the early days were not pleasant, they were difficult days, but we can testify that God was with us. The vision of a flourishing work would come true in the years to come – He simply wanted us to stay on and plod on, one day at a time, simply trusting Him. He would be the source of all wisdom, strength and encouragement. That vision has become reality in the following 25 years and God has allowed us to see it with our eyes. Great is His faithfulness…

References:

  1. https://the-sparrowsnest.net/2016/02/19/short-video-of-our-work-made-by-emmanuel-hospital-association/
  2. https://the-sparrowsnest.net/2017/09/13/obeying-a-call-to-medical-missions-a-testimony/