Ponnupoina Nageshwar Rao, is physically challenged. He was born with a crippled leg. He is the second of three children and hails from Khambhampadu village, Nuzendla Manda of the Guntur district in Andhra Pradesh. Initailly his parents, father Satyanarayana and mother Vijaylaksmi focused on educating his able bodied brothers. This was because they believed that an education would be of no use to Ponnupoina.
The intervention of AIFO , in providing him study materials and funding as well as counselling to his family ensured that Ponnupoina got a chance to pursue his education. While he was a good student, being a differently abled child brought with it many challenges – loneliness and lack of friends, being misunderstood and always lagging behind.
Ponnupoina’s will to have a normal life saw his teach himself how to ride a bicycle and eventually as an adult even ride a motor bike. This was not an easy task and took him years to master. Ponnupoina, passed his 10th and 12th grade examinations and today is pursuing his second year of a three undergraduate degree in commerce. His desire is to study hard and become an IAS ( Indian Administrative Services) officer, and serve his country with a particular focus on the needs of the differently abled and handicapped. He is inspired by Ira Singhal , the first handicapped women to top the IAS examination. Ponnupoina, says that it is only because of the support of AIFO, his family and his optimistic outlook that he has achieved so much. He believes anything is possible , and the future is full of possibility.
A pathetic story from a family with 10 children
Obituary Swapna Das from Lakhimpur district was admitted with – recurrent ulcerative ENL reaction (all names changed to protect privacy and confidentiality)
Swapna: May her Soul rest in Peace –She Died , because timely medical intervention was not available to her.
A family of 12 members, 10 children (6 brothers and 4 Sisters) 6 siblings developed leprosy and had treatment with MDT and among them 3 expired due to complications related to Leprosy (Erythema Nodosum Leprosum- ENL severe form) father affected by leprosy, with multiple disabilities, family members feel that he is the main cause for all the miseries attributing to sin’s he had committed.“ is belief on Sin taking over Science”
She had great faith in treatment and had adhered to all the prescriptions – She was treated for Pemphigus a rare dermatological condition, was over treated with Steroids, and developed steroid dependence (this happened at a tertiary level teaching institution. To manage such cases – the only drug of choice is “Thalidomide” an expensive, medicine to be taken under strict precautions and care as in- patients.
Prabhaat Das (M) 35
Developed leprosy treated for Multi-bacillary (B-MDT) 15 years ago
Laxmi Das (F) 33
Developed leprosy treated for Multi-bacillary (B-MDT) – Married
Vandana Das (F) 31
Developed leprosy treated for Multi-bacillary (B-MDT) – Complication – Expired
Mukul Das (M) 30
Manoj Kumar Das (M) 29
Developed leprosy treated for Multi-bacillary (B-MDT) complication expired
Mongal Das (M) 27
Developed leprosy treated for Multi-bacillary (B-MDT) – Complication Serious condition, not willing to come for in-patient care.
Biswajith Kumar Das (M) 25
Swapna Das (F) 23
Developed leprosy treated for Multi-bacillary (B-MDT) Complication Expired – admitted and was improving very well, suddenly lost hopes and got discharged against medical advice .. Expired the very next day.24th March 2012
Bimal Kumar Das (M) 25
Smitha Das (F) 18
Swapna Das was detected on the 20th February 2012, by AIFO – NLEP Consultant, motivated and got her admitted in the Catholic Hospital – Borgang, where she received necessary treatment for her complication with tablet Thalidomide and Blood transfusion, which produced satisfactory improvement, however a month later, she started to refuse treatment and left the hospital against medical advice on 24.March 2012 and expired the very next day at her home.
Capacity Building, expertise development in the field of leprosy, provision of all level Referral system to be in place to identify, refer and manage complications due to leprosy. The present supportive operations need to be intensified.
An Incident to share
After completing the training programme at Sibsagar while on the way back, just near to the Primary Health Centre – at Tea estate, colony is a settlement of population from other parts of India (Orissa, Andhra Pradesh Kerala) brought here during British regime. The AIFO training team found this young lady walking across, to find her affected by leprosy and due to lack of early detection had reached a multi- bacillary advanced stage of Leprosy and she informed us that she did visit health centres and was prescribed ointments all the time. Measure were taken to ensure she gets treated,
lessons learnt : Improve IEC activities, support the IEC programme with effective Health Services, specially for the underserved areas – people dwelling in colonies at Tea estates which are widely spread across these districts. AIFO operations need to expand strategies to support the leprosy Programme.
An Incident to share
The year was 1983. I was 21 years old. I had enrolled for the Chartered accountancy course, after having completed my graduation in science. For about a few months I had begun to experience a peculiar ‘tug’ on the little finger of my right hand. I also noticed a huge glistening pinkish patch on my right arm, around my elbows. My parents took me to meet a skin specialist, who took a biopsy of my skin. Even before the results of the biopsy was out, some intuition, premonition of a doom egged me to look up a few medical books in the central library of the city I lived in, Coimbatore. Even before my family broke the news to me, I had realized that I had contracted Leprosy.
From being a confident, young woman who had the whole world under her feet, I felt seeing my world slip away from under my feet on that moment of realization. From being someone who wanted to speak up, say things how they are, I turned into someone who from then onwards will have no voice. I became voiceless, opinion-less and future-less. My family was devastated too – however they handled the problem in hand in the most compassionate way that was possible. My sister Shri, older to me by two years, took charge of my emotional, physical and psychological life by being around me constantly, playing tricks like knocking on the bathroom door pretending she wanted to use it, if she found me taking longer than she thought to be normal, eating out of my plate – everything to ensure that I got it that they, my family were ok about what happened to me, that I was not going to be abandoned, and that they were not going to allow me to take my own life should such thoughts cross my mind.
I was a gift of God – the year 1983 was also declared to be the year when the Multi Drug Therapy (MDT) was introduced in our city. Dapsone which I was prescribed by the doctor, was proving to be ineffective. My right hand began to develop the claw. The patch grew bigger. Again Shri took charge, and my parents were persuaded to change my doctor. Dr Rajan let me understand that the MDT would cure me. Before that I also underwent an operation to move my ulnar nerve to release the clawing effect which did not do much to my situation. However, I was on the pathway to recovery. We did not speak about my situation at home. There was always a silence around all of us. I remained silent as I felt I had lost the right to speak. I felt guilty that I was subjecting my parents to so much of torture. Precisely to ease their pain, I really wanted to cure myself. Soon I was a wreck – the fear, anxiety, the worry for my lack-lustre future was so big, I began to have indigestion, sluggish liver, multiple pre-mature ventricular beat, puffy eyes, and every other symptom of a sickly person, that soon I was swallowing Indral, Valium and a few other medicines in addition to the MDT treatment I was on.
By 1987 I had moved to Bangalore. I wanted to move to a new city and I convinced my parents to let me go. Here I had the advantage of anonymity. No one walked up on the road and asked me, ‘Jayashree, what happened to you? Why have you lost weight/ looking charred/ looking sick/..” etc etc which was the way I began to be greeted in my home city. I also could avoid looking at the saddened eyes of my parents, avoid seeing in their eyes what I had become – someone unlucky, and doomed. In Bangalore I was on my own. Meaning, I had to fend for myself including medically. I would buy my own dose of medication whenever I felt there was some ‘germ attack’ – my own discovery that I believed was true – the smallest tug in my little finger to me meant I was being attacked by germs and I needed a lot more of medication. Of course, my biggest challenge used to be to find a quiet time in the neighborhood medical store – I would write out the names of the tablets, hang around the store till the crowd emptied, and with heart beating very loud, I would push the paper to the chemist, barely making eye contact with him. Those days my biggest fear was the fear of being discovered by my then best friend Chita – I would hold her little babies in my arms, and feel like an imposter. I was sure that if Chita were to come to know that I am being treated for leprosy, she might scream at me, and ask me to drop her babies to the floor and leave her house, never to return. I had to keep the secret of what I ‘really’ was, close to my chest – it was suffocating to say the least. I felt like an imposter all through while interacting with people. I took up a trainee position in a CA firm and hid my condition from all. I felt older (although I must have just been a few years senior to most students), I felt like a liar, like a kind of an outsider who did not belong. I made do with pen-friends, except for Chitra, and lived in a make-believe world where my only hope would be when I find another handicapped man with whom I could build a family.
By 1989 I had found happiness in Bangalore – I met Dr. Paul Neelamkavil, who helped me in removing my fear when he told me that I had not only cured myself, but also my whole neighborhood. His words worked wonders for me. He even gave me a letter introducing me to Sister Mary Mascarenas who was involved in the work of leprosy rehabilitation in Sumanahalli, Bangalore, on my request that I would like to work for this cause. Of course, I never did meet Sr. Mary. It was too much for me to meet her. I did not know how I could work for leprosy. But every time I saw a beggar on the road, begging with his stubby hand asking for alms, I dropped a coin into his hand, and silently apologized to him, saying, ‘Sorry, brother, I have let you down. I am like you only, I am just privileged that my family did not kick me out of my home, whereas yours did. I am truly sorry.’ I truly felt that I belonged with them. I lived for a long time, being grateful to my family for not asking me to leave the house. I was an outsider, within my home. And this, notwithstanding the love and support of my family, especially my sisters – Shri, the older one and Sangu, who is younger to me, and my parents.
That year I also met a young happy man – he was studying for CA too. I marveled at how happy he was. I had not remembered what it was to be happy for a long time. Maybe I did laugh. But happy? I wondered what that was. This young man asked me out, and when I blurted to him that I am a leprosy cured person, he held my hand, and told me that’s not wrong and I felt as if the birds were singing, that the butterflies were flying again and that all was well with the world. I married him, feeling grateful, and always relating to life from a place of wonderment. I did not belong anywhere. But I wanted to have a family with this man, and sadly kept trying to be happy. In the meantime tragedy had struck us, my sister Shri died in a road accident in 1993, leaving behind her husband and a 4 year old lovely baby girl. My sister’s death struck some common sense into my head – I began to see life for what it was. I had made a big deal of my disease – but here was a bigger problem – everyone in my family had to deal with the death of someone so young, so beautiful and so full of life. I began to strike back at life – first at God, blaming him for the games he played, and then began to assert myself. I began to seek happiness for my own self. My husband left me in 1995 and I became free and happy for once. In 1997 I declared myself free, and happy and began to immerse myself in volunteering work. Nothing gave me more joy that being a leader in an organisation that helped people discover themselves. During the course of my volunteering I began to share my life-story with people. The more I shared with people that I have had Leprosy and that I am now cured, the more I felt freed up. Additionally, the fact that people walked up to me to congratulate me for my victory over the illness healed me further. In the meantime, my sister, brother were married, settled in their family life, and my little niece grew up to be a young confident working girl. I too began to look for living my family life again. I started aspiring for success in all areas of my life. I re-married, after a long gap of living the life of a single woman. My husband and I now run a successful business in coaching of senior executives in Multinational companies, and we are happy with what we do.
The fact that I got reconciled to being ‘deserving’ of money, wealth, and the worldly possessions, and being emotionally in a relationship of caring and sharing, freed me to think about working for Leprosy – this time, for real. I contacted a few agencies, including LEPRA and AIFO. The turning point in my life was when I dropped in to spend half a day at the Bangalore office of AIFO at the invitation of Mr. Jose M V and his team I felt I had come home at last. Jose and Dr. Mani welcomed me as if I were a long lost family. Dr. Mani had prepared a presentation for me about the situation in Assam. I was appalled at the real situation – there seems to be so much work to be done! The meeting was educative, and my resolve to be here for this work became stronger. Earlier I would keep telling myself, ‘If I die without doing this work, I will never forgive myself’. I do not want to die without doing the work for which I was born. I am sure; I was born to work for this cause. I want to be used up, in any and every way possible for making the work of creating dignity for people who suffer from this illness become a reality, and to help others understand that this is just another disease which is curable. Currently I am a trustee of AIFO, and a member of board of Lepra Society. I am also a trustee of a consortium called the Goodbye Leprosy Trust formed out of a few agencies that work for the cause of Leprosy. I experience immense satisfaction that I am now working with several committed individuals like Dr Jose and Dr Mani and their team, who have been working relentlessly towards removing the stigma and discrimination faced by people affected by Leprosy and rehabilitating them.
All through the years, even before entering actively into the work of Leprosy, I had been regularly following up with the stories on leprosy, including studying the statistics on the disease – a few years ago, it seemed to me that without me being involved, everything is going well – that the world in general and India in particular has been successful in eliminating this disease, and that everyone, meaning the public in general is well aware about this being a simple disease that is highly curable. Yet, I remember when in 2001 I was taking printouts about some stories on leprosy – I was doing my academic studies on the subject, secretly patting myself that I was being true to what Mahatma Gandhi said, that ‘An ounce of practice is worth more than tons of preaching’ , that I am indeed being ‘involved’. I remember I had left the printouts near my bed. Then revulsion took over – I felt I had ‘dirtied’ my bedside by having these prints next to it! In the next thirty seconds I was shaken up by the irony of it all, and by the joke – it was a printout and not even someone with the disease besides my bed. And the irony that me, who was a carrier of this disease was reacting so sharply!
My physical leprosy got cured long ago. I was stuck mentally being sick, for decades. I want to help others not take all that long.