The Lepers’ World

About 40 minutes by train from Sealdah Station in Kolkata, just on the other side of the tracks from the Titagarh Railway Station, there is a long, low, blue building amidst the shrubbery and mud.  This building is easily lost amid the jumble of other structures in the area, distinguishable only by its length and its soft blue color.  In fact, it would be impossible to see at all from the train.[1]

This is Gandhiji Prem Nivas, a small compound and home to roughly 500 women and men living with leprosy.  Founded by St. Theresa of Kolkata, this physically unremarkable building has been housing, treating, and curing the most ostracized, rejected, and misunderstood members of society since 1958.

Leprosy.

Yes.  Leprosy.

I had the same thought when I first had the opportunity to visit Gandhiji Prem Nivas last August, when I was in Kolkata volunteering with St. Theresa’s religious order, the Missionaries of Charity.  Actually, this word was more of a loud dubious resounding throughout all my thoughts, a question I could not quite comprehend.

Leprosy?  It really exists?

As in, really?

I’d heard faintly before coming to Kolkata that there were leper colonies in India.  Perhaps I’d also read somewhere that there were a couple other countries with leprosy still in existence.  But I’d never in my faintest imaginings…well, actually imagined it.  I just never stopped to think in detail about this disease.  I’d never spent time researching it, never seen a documentary on it, or even passively stopped to think about what it would be like in one of these leper villages.  It was too distant, too far-fetched.  It simply wasn’t real: akin to the other side of the universe, or a black hole.  It’s there, certainly, but without real consequence in my life.  I knew that it was awful, and having leprosy seemed to be a pretty serious situation in the Bible, but that was about it.

But let me tell you something: a short time in Kolkata, and an ever shorter time in the houses and homes of the Missionaries of Charity, will change your mind forever about what is consequential in life. 

This city—incidentally nicknamed the City of Joy—blew my mind away so thoroughly, and offered so many surprises at every street corner, literally in every breath (o, the air in Kolkata!  O, the myriad and indescribable surprises in just one inhalation!) that by the time I’d been there one week, I no longer had room for any disbelief.  If a disease could exist here in this City of Joy, it would—even something like leprosy, which many of us  gloss over when we talk about.

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By the time I’d been in Kolkata two weeks, then, I found the thoughts moving towards deeper questions.  I wanted to know more.  It was no longer “Leprosy?  Nah…really?”  But, “leprosy…what’s it like?”

How do they survive in this world?  What is their life like, given how ostracized and rejected this class of people is?

Lepers are perhaps the most ostracized group of people in this world.  Even in Jesus’ time the lepers had their own colonies, their own rejected corner in the world.  In fact this theme and tradition of casting away lepers goes back to Leviticus, several thousand years before Christ. (the regulations against and treatment of people with this disease is pretty stinkin’ harsh, to say the least).  There is no doubt that even the word “leper” causes some people to crinkle their nose, or frown in some sort of vague disgust.  I’ve seen the crinkling.

I’ve also done the crinkling.

So, actually, maybe that’s what drew me to sign up to visit, after all.  How can I get to know about this disease, to really find out what it’s like?  How can I, perhaps, attend to these stereotypes and stigmas in my own life?

With these questions in mind, and of course with (the requisite) hesitations, I boarded the train at Sealdah Station in Kolkata, with about 20 others volunteers from all over the world, on a horrifically sultry Thursday morning: bound for Gandhiji Prem Nivas.

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The train situation in Kolkata, on the way to Ghandiji Prem Nivas.  Need I say more?

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So.  First, a bit about leprosy itself: from what I found out directly at Prem Nivas from the Missionary of Charity brothers, and further research.  Leprosy is a degenerative disease which causes progressive damage to peripheral nerves, skin, the respiratory tract and the eyes. Untreated, leprosy can cause permanent damage to the skin, nerves, limbs, and eyes.  This causes serious deformities, and can occasion skin lesions, blindness, and loss of limbs.  Leprosy is contagious but NOT by normal touch. Neither is it highly infectious.  It is transmitted by air, from secretions from the noise and mouth such as sneezes, saliva, mucus, etc.  Prolonged contact with infected persons has, in most cases, not led to contraction of the disease.  Currently, eight Missionary of Charity brothers live and work with the lepers at Gandhiji Prem Nivas, caring for them 24 hours a day.  None of them has contracted leprosy, and none of the staff has either.

Leprosy is also curable.  It is treated with MDT, or multi-drug therapy, which since 1995 has been provided by the World Health Organization free of charge to all patients worldwide (from the WHO). With the very first treatment–within 24 hours–leprosy ceases to be contagious.

Today’s India—the India I visited last August—contains about 60% of the estimated 176,176 leprosy cases (reported worldwide, as of 2015).  This number has fallen from 10-12 million worldwide as reported in 1988.  India has “officially” eradicated leprosy; according to government reports the disease no longer exists.

Since it’s not a very prevalent disease worldwide, it is misunderstood just as widely.  As little as you might know about leprosy, there are likely just as many living in Kolkata who know as much, or less.  There just isn’t common information available, and there are shrouds upon shrouds of misinformation.  As such, those living with the disease must endure not only the physical and biological effects of the disease, but the societal ramifications.  These stigmas and their effects can be as debilitating, if not more so, than the disease itself.  Excluded from their homes, villages, and wider social support circles, lepers receive almost no support from their families or communities (this is not just back in Biblical history).  This exclusion extends to their entire family.  In fact, a diagnosis of one individual with leprosy can cast the entire family into this lower stratus, and thus into extreme poverty.  The children of lepers then are born into these stigmas.  They might grow up having never known anything of educational opportunities or economic advancement simply because of their “family’s” disease.  They, too, would then live outside of society, in a class entirely apart.

To paraphrase one of the Missionary of Charity brothers who led us through the compound, if you have leprosy, so does your entire family.

The question, then, is: what is this disease really like for those who have it?  What’s really happening at Gandhiji Prem Nivas, this rarest of places where an entire community is functioning?

I had thought Kolkata took the shock right out of me. And so I went through the doors of that long low unexceptional blue building to get the answers to my questions.  I walked into the lepers’ world, and let me tell you: I was wrong about having no more surprise left in me.

Life at Gandhiji Prem Nivas is quite productive.  This long blue building that you first enter to get into the village is the production center for the Missionary of Charity’s iconic blue-and-white sarees—the habit that St. Theresa of Kolkata wore throughout her life

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The Missionaries of Charity leaving Normal Hriday, the home for the Destitute and Dying.  This is the first home established by St. Theresa of Kolkata.

and made famous in every picture of her ever since.  Here, the residents weave the sarees for nearly 5000 MC sisters worldwide—but that’s not all!  They also produce the bed sheets, towels, cloths, and lungis [2] for the patients in all of the Missionary of Charity houses, worldwide as well.

 

It’s immediately noticeable that the residents have a very healthy sense of community.  This main building is a beehive of activity, with women and men both weaving away, controlling the looms with a beautiful and rhythmic cadence that fills the entire village and marks the time.  It is the source of their friendship, of gossip and sharing, of laughter, of productivity and purpose, of sweat and life and hope.  This is their workplace and their home, and they take pride in it—after all, they are providing for thousands of religious sisters and tens of thousands of poor, many just like them!  This sense of connection and pride is also readily apparent in the big proud smiles that I saw on face after face as I passed through.  I lingered for a bit behind our group of volunteers, watching the men click away and the women peek at us from behind the weaving cloth.  I could see how rhythmic this work was, and how it seemed to be so comforting.  We all know of tasks that are rather therapeutic and calming; weaving seemed to have this sort of talismanic relief for the workers.  As I passed, one of the men showed me how to operate the loom.  He told me with obvious pride that he could make one bed sheet in 45 minutes, or about 10 a day.

Weaving isn’t the only task to keep the residents busy.  Aside from the saree factory, the folks at Gandhiji Prem Nivas also maintain a small farm on site: they take care of pigs, goats, chickens and cows, and maintain a fish farm that provides for their own meals.  A small school fits neatly into the back corner behind the dorm beds, above the cafeteria.  Here about 100 kids receive a formal education.  There is a small shoe shop at the front of the long building, where the men craft shoes especially suited for feet that have been damaged/deformed from the degenerative effects of leprosy.  Interestingly, these shoes aren’t just for the lepers.  The orthopedics help correct all sorts of damages done from the dozens of injuries, diseases, and disabilities encountered in the Missionary of Charity homes throughout Kolkata.

I’m not going to lie.  I was a bit nervous to embark on this journey to Prem Nivas.  I had the tinge in my stomach that told me something new and perhaps threatening was on its way: akin to boarding a plane you already knew was going to encounter turbulence.  I didn’t entirely know what to expect, in short, but enough to be hesitant.

Then I got there, and I walked through the dorm halls of the compound, and down the aisle of that giant blue factory amid all those looms.

And I saw the truest, broadest smiles that I’ve seen this side of heaven.

I saw eyes that were bright, shining, clean.

I felt the hands of the lepers, and they were warm.  Some of the skin was cracked, some was dry, some was soft–yet their hands were firm, solid, the grip universally affectionate.

I heard laughter, and it rang loud and clear and pure.  It rang with a clarity that could only have come from its isolation—separation from the din, the noise, the chaos, the corruption and the confusion of society that personally had me in a tizzy.

I tasted the crackers and the chai tea that came from the nursery.

I smelled pigs, and fruit, and fish from the farm.  I caught the smell of sleep, of sweat, of dirt, of cows, of beans in the kitchen and tropical flowers I couldn’t name.

I saw that leprosy is not a thing to fear as we so often believe.  Yes, perhaps it’s a terrible disease (if it runs its course), but the men and women here?  They are receiving treatment.  They’re not contagious.  They’re not monsters.  They’re normal, as full of life and spirit as any of us who are reading this.

The tide may still be out on the stigmas and the ostracizing, but these men and women work just like you and me.  They’re healing, and in fact many of them have already healed and are working at reintegrating back into their communities.  They play, they eat, they study, they sleep, they laugh and cry and share stories.  They live and move and have their being, and they carry on with what God has given them.  What’s astonishing, what’s astounding–what floored me and continues to floor me even as I write this–is that they do it with a joy that’s indescribable.

Now. I  realize I was just there a few hours.  I may have just seen a short bit of it, I may have just been the outsider and the residents may have just been reacting to this presence.  I recognize that I’m not there day in and day out, and of course I’m not living with leprosy or any of the social stigmas.   I myself can’t gloss over how much suffering must come with this disease, regardless of how far treatment has come.  And I can’t gloss over the fact that I have my feet, my hands, my nerves and my eyesight all intact.  I’m hugely, hugely blessed to have this health and this sound body of mine.

But the smiles that I saw?  The hands that I held?  What they communicate doesn’t lie, and it radiated a depth of joy that didn’t seem to know a limit.

For me, this was the true City of Joy.

 

[1] A lot is unnoticeable from the train, as the only thing you can usually make out is the depth of somebody’s armpit—not just near you, but so close you couldn’t ever forget such intimacy

[2] A lungi is a long skirt-style fabric which is worn by men in India, Bangledesh, Myanmar, and other parts of Asia and the Indian subcontinent.

4 comments

    • That is a most interesting and compelling question! My prayer and wish is that we can all see this beauty and joy more often, of course, all around us — not just in India 🙂

      Like

  1. wow!!! thank you for transporting me into this city… where joy is, as you have described it… is as real as joy can ever be… Through your words, you have allowed us to have a taste, to catch a glimpse, to smell and feel a piece of paradise where God’s presence is truly felt…

    Liked by 1 person

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