Our first meet …

I regret not blogging enough last year; err actually till recently too. I missed recording so many things which I wanted to be written down somewhere, more importantly ought to be shared. They were in some corner of my mind, but never got translated into this space. But they are not things which hold a significance only in ‘that’ period of time, but are timeless. Sharing one such thing now πŸ™‚

All I knew about Leprosy in my life till I visited Sivananda rehab center that ‘just any other day’ last year in search of volunteering opportunities, was that those affected lose sensation in the said areas. All I had gathered from some movies was that they prick the area with a pin to ensure it was not what they thought it was. Β But that day taught me a lot more.

Sivananda lies on the main road in one of the prime areas in Hyderabad, but hardly anybody I meet seems to know about it. All I knew about the place was also just that they shelter the needy affected by Leprosy, TB and AIDS. When I reached the place and asked them if I could go around meeting people, they very happily agreed. Off I went with Lady P who has been teaching the AIDS-affected children there for 8 years now without taking a break or taking it only when she could arrange for someone to fill her place for all the time she would not be around. Such is the commitment of the people you get to see here.

Things I saw and heard shocked me, amazed me, left me hurt and inspired too. I learnt that most people affected with Leprosy don’t get to go back to their own homes even after they are cured because the society never accepts them 😦 Sivananda, in its own campus, has atleast 300 huts where such people now live and lead normal lives. Some of them are married amongst themselves, have kids and live like any of us do – clean their house, cook their own food and so on. Since nobody is ready to take them in, Sivananda has a beautiful system in place where they work in the campus to make different things required in the in-house surgical facility, make and sell agarbatis, candles, lampshades and so on. Β Even those who are on the road to recovery do small odd jobs like carrying the vegetables and provisions to the kitchen etc.. because they start feeling like a burden otherwise.

I got to know that they lose sensation so badly that their feet are always in trouble since they cannot feel any pain even if a thick piece of glass pierces into them, hence making it necessary to wear these thick-soled shoes all the time. Not only this, we all blink on an average every 5 seconds or so, but these people have to remember to do so! I had never even given a thought to that! How many things are keeping us healthy the way we are and how much more grateful we ought to be 😐

In most cases, the fingers become shortened and deformed and they undergo repeated surgeries to ensure as much recovery as possible. Despite all these, they have not lost their hope and zeal. I met this lady who was making beautiful thread-work greeting cards – all her fingers were deformed.

You can have a look here.

I asked her if I could take a video of her making the cards and she was all smiles πŸ™‚ Here she is! Hats Off!

It was so overwhelming that I was not sure if I was ready to meet the kids affected with AIDS too the same day 😐 This was a first too, and my heart alternated between Yes and No. I thought I would cry and I could not afford to do that. But I went, and their smiles like they had the world at their feet made me smile too. They were excited to show me around

Paintings made by them
Some more work of art
Their timetable

I have been to Sivananda many times over now, and every single time the children welcome you with the same zeal and excitement. Contrary to belief, nothing happens to us when we visit either of them. Actually, these kids are more at risk from us because they catch infections easily. Β And this needs to be told to people. The society needs to be sensitized so that we don’t outcast people suffering from these diseases.

I wish we see a day when these problems don’t exist at all; till then, if we can make some time to go visit and spend time with them, it would mean a lot! Actually, it means the world to them.

47 Comments

  1. What an eye opener Swaru! Even I knew just about the needle prick thing..
    Having to remember to blink your eyes!! Thats huge..

    Society not accepting people who are not ‘normal’.. is a big pain point always 😦

    And yes.. contrary to our belief..there are many strong souls who dont give up in the face of such difficulties.. hats off to them. And, to all you people who dedicate your lives to their service!!!

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  2. These are the people who we shud be following. The ones who have actually worked hard to be where they are inspite of society and all that pallava. they are the real heroes..

    YET we run after those who do nothing or will ever do ..

    Thank you for bringing this up, maybe one day the likes of me will go there to see..
    I am myself being a hypocrite here as I do the same as all do, I did not even know a place like this existed ..

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    1. All of us would have done that at some point Bik! I would be telling a lie if I said I did not have that concern in some corner of my mind too πŸ™‚ Infact, I even took a bath when I returned home the first time 😐 So there!

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  3. They are indeed an inspiration despite their physical un-wellness !!!

    Those greeting cards are so lovely !!!

    Swaru, many hugs for blogging on this πŸ™‚

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  4. You are a great soul Swaram. I admire you.
    Thank you so much for sharing all the information with us. I knew places like this exist but never thought of actually going and looking what goes on there. What talent what dedication they have … Amazing!

    How inspiring and soul stirring…!

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  5. That was heart-breaking and hope-inspiring at the same time, Swaram.

    So sad to see the prejudices they face, and yet their spirit, which refuses to be broken. So very inspiring.

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  6. there are so many things that i take for granted that im now grateful for, swar. these people now only shed light that but also are an inspiration to me to do something useful, not to complain about what i have but to always look at the bright side and make a positive use of all that i have. thanks for sharing such amazing stories, swar.

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  7. This is so very inspiring and enlightening!!
    They have to remember to blink!! OMG!
    Sad that they are not accepted by their own families but the grit and determination they have to live and enjoy life… hats off to them.

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    1. That had me almost in a freeze for a few seconds Shilpa .. imagine having to remember to blink. We need to be so thankful for what we have 😦

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  8. It is so sad and inspiring together…. There are just so many things that we take for granted… And here we have these people fighting all odd with a zeal to survive…

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  9. Your posts are always inspiring to may of us, These posts give the bitter reality of our society . Hats off to those who think differently.

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  10. This is a wonderful post to highlight an age-old problem! I wish there were more people like you who show such compassion and take steps to help out others!

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  11. Amamzing work there! And yes I agree with your wish, if only we could re write all the stories in world and give them a Happily ever after ending!

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  12. So true. The things we take for granted and what all we crib about…. when we do not realize we have so much to be grateful for!

    The society needs to be sensitized so that we don’t outcast people suffering from these diseases.
    Agree. But then it’s a very unforgiving world isn’t it? 😦

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    1. Well, the world is made up of all of us. It is for us to take a look and do our bit, and am sure individual efforts will join to change the world – that’s what I think and believe in πŸ™‚

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  13. Very nice post Swaram. We really do not know a lot about these illnesses and about the the people who actually go through it. Anybody who is going through such a difficult period in life needs loving care. I really wish more people realize this.

    Hats off to those people for being so strong having hope for life in such situations and to you people for dedicating your lives to help such people. The next time I am in Hyderabad, I will email you. I really want to go and visit this place.

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  14. This is a beautiful post Swaram. You know, even after orientations and talks, teenagers grow up and into adulthood with misconceptions concerning diseases and how they are are contagious. I am not saying that anyone is perfect but it does help a lot when one respects the learning and abides by it. There are times when we must be concerned about our own hygiene but I have met people who are so well educated but refuse to touch persons with AIDS. Not that education has everything to do with it, but still.
    K and I once volunteered to take some aged and wonderful people for coffee and a small outing. It was heartening to know their stories, and you inspire me to write about it πŸ™‚ thanks for the lovely post and hugs to you for touching lives so beautifully πŸ™‚ really glad to meet you here swaram πŸ™‚

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  15. Lovely post as always, Swaru!
    Makes me guilty as hell, always keep thinking about this but priority goes to zillions of other mindane things in life 😦
    Hope this post inspires me into action πŸ™‚

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  16. Very inspiring post Swaram….and so full of details. The most important being… leprosy is not contagious. Thank U so much for sharing this with us!!!!

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  17. Such a heart-breaking post. I really wish people understood that Leprosy is not contagious and it is curable. Thanks for such a detailed write up.

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