A Wrestle with Leprosy

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 (30^th 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

Tags: Christian Medical Missions, Christian Missions, Emmanuel Hospital Association, Leprosy, Leprosy in a caregiver, Leprosy in a doctor, Makunda Christian Hospital, Medical Missions, Vijay Anand Ismavel, Wrestling with leprosy