Chelsea visited Lalgadh in Summer 2011 as a Social Care student inspired by the writing of Paul Brand about leprosy. NLT came up first in her online search and led to several weeks at Lalgadh. Here are a couple of days from her fascinating blog account of her time there (called Nepalcalypse Now):
Community Run Two
Went into another village (this one about an hour away) to implement a new integrated health program, where the
CommunityDevelopment Department (CDD) is hoping to improve water supply/sanitation, waste issues, access to formal education for children, informal education for adults, and employment. Today they were going out to draw a map of the village: the water supplies (which included a river that is dry 95% of the time, and one well) the crop shares, and the huts…and also to “take data” of the number of people in each hut household. CDD has already been involved with this village for two years because one of the self-help groups for the leprosy-infected is established there – made up of about 6 people. In all projects, CDD utilizes the Participatory Rural Appraisal model, so the goal is that the people from the self-help group, along with other disabled members of the community, will take the reigns and form the Health Action Committee: carrying the project by initiating the health practices and hopefully motivating their neighbors to participate as well. The idea is that the community at large will witness positive changes taking place behind the lead of those competent and noteworthy individuals – which will ultimately continue to decrease the stigma attached to disease, disability and deformity.
After a good drive (today was 108°) we found the little clay path that leads from the main road to the village. When you
first pull up there is a big round concrete slab with a big beautiful tree planted in the middle. A few villagers were there waiting for us already, and one woman named Latika had a few dusty bottles of unopened coca-cola sitting there. She rolled out the straw mats to place atop the concrete, and motioned that we all sit. We took off our sandals and Krishna rolled out a large piece of paper, gathered a few rocks from the ground and placed them over 4 corners to keep the paper pinned (thank goodness there was wind to need pinning), and sharpened his pencil before he began to sketch the map. Squiggles for the river, boxes for the huts, then an “X” for the well. As he drew, and the other staff whose name I can’t spell was writing down household numbers, the villagers began slowly accumulating.
Men, women, children, dogs, goats and chickens they came, eyeing the map, eyeing us, and especially eyeing me as I sat Indian-style trying to understand what was happening. Most piled onto the concrete and on top of one another and
on top of us, and others climbed on the truck, sprawled out over the other side, sat in the gravel below, or simply came and went as they pleased. Kids would come and rest their arms over my lap, while they examined my face. Women would back up next to me and look over my shoulder. Others would hand me their children. Latika, charismatic and intelligent, beautiful and furiously attentive – would catch my eye and just stare at me with this funny smile, almost like she had solved the mystery of my being there and was endearingly keeping it between she and I. And I didn’t really have a clue what it was but it she had me convinced that maybe I did. And so she would just grin. Then her attention would jerk back to the map and the community needs, and she’d fanatically advocate for her people and for progress while she played with my toes.
I am finding this to be a pretty normal thing…without borders seems to be a common theme. There are no borders between the inside and outside. There are no borders between facilities. No borders between what is kempt and what is unkempt. No borders between belongings. No borders between individuals or personal space. Women breast-feed at all the time everywhere. I never can tell which child belongs to who, which person has come for service and which has simply wandered to the compound of boredom or curiosity, or which people are strangers to each other and which are family. But I kind of like this – doesn’t leave much room for inauthenticity – you kind of have to be where you are everywhere all the time, because everywhere all the time is where you are.
There was a fourteen-year-old boy at the meeting who, by his way of communicating, stood out as maybe having had some education. It seemed like the older adults looked to him to help relay and clarify. He inched toward me and started to softly and subtly sing, “Abarum……many son…..many son, faaadther abarum…” when I caught what he was singing, I looked at him, laughed and nodded, “I am one of them, and so are you…” A ginormous grin swept his face. Ecstatic and humbly thrilled with his ability to communicate, and he neared my face and said, “your name??” For the next hour the next hour a mass of them huddled round us while we tried to exchange one word at a time. He introduced me to his mother, who has leprosy and works in the kitchen of Lalgadh’s Care Haven facility. She hitched a ride with us on the way home, with one hand out the window and the other resting on my knee. And when I asked Krishna to tell her that her son spoke very good English, she teared up, smiled said a few words, and he relayed to me that she could not believe he could communicate with me…she was very, very happy. And very, very proud.
A Day in the Wards
So today I headed up to the nursing station of the IPD to see about doing ward rounds, which includes going with the
doctor round the 6 IPD wards and checking on each patient and their condition. I was really excited about this, because I really enjoy the patient contact, and also really wanted to get an idea of what exactly was going on with each of them. And so we went, followed by the nurses with their cart of spirit and gauze to redress the other 85% of wounds (the ones that don’t require Septic Surgery Room operational care) at bedside.
I was reading further in Paul Brand’s book, and had just come across this part where he talks about pain being primarily a function of the brain:
“…When you feel a pain in the leg that has been amputated, where is the pain? If you say it is in your head, would it be in your head if the leg had not been amputated? If you say yes, then what reason have you ever for thinking you have a leg?” – Bertrand Russell
In other words, Brand writes, “Sensations of pain, like all others, enter the brain in the neutral, dot-dash language of nerve transmission. Anything more – an emotional response or even the perception of ‘It hurts!’ – is an interpretation supplied by the brain.”
I figured if your own pain and the response to it, emotional or perceptional, is ultimately controlled by the brain – then I was going to apply the same concept to my response to another person’s pain – be it an emotional, perceptional and/or in the last case, physical response. I don’t know if it works like that but I decided that today, if it meant I was going to get to go patient-to-patient through the entire IPD with a doctor who spoke English, it was going to work like that.
Who knew it was easy as that? I went without flinching. I am unsure whether this is something to be proud of, or disturbed by, but it meant I was able to interact fully present – and either way I was thankful for that.
Toward the end of rounds, Dr. Llama and I reached one of the last patients in the men’s wards, who had the worst ulcer condition he said he’d seen in a few years. The white bandages wrapped round his legs were colored from the dried fluids, and when the nurse tried to remove them, they wouldn’t come for being nearly glued to his open sores. So over the tops of the bandages they squirted almost an entire bottle of spirit to try and loosen the stickiness all the way through. Then they pulled, almost carefully enough to keep from tugging at skin and tissue, but not without plenty of unavoidable cases. From his knees down to the tips of his toes, both of the man’s legs were covered in ulcers. It looked like someone had taken the hand-held part of a vacuum to different spots, so that as it approached the leg it would suck up what layers of skin were closest to the surface and surrounded the mouth of the vacuum. But the closer it came to its target, the more concentrated the suction became, so that by the time it actually leeched to the skin itself it would pull up the very bone, and that is all you could see in the center of these ulcers. Surely keeping gauze that is no more than fine fish-netted cloth plastered to all these open sores is not the best method to healing them. Surely he could just borrow a blanket of skin from someone else and have it sewn to him to at least close it all up, right?
The nurse took clumps of folded, saline-covered gauze, and gently slid them over his wounds and I watched the substances bleed together like she was painting with watercolors. With new clumps she dabbed the worst parts of the ulcers with iodine. Then she unfolded sets of dry, clean gauze, and wrapped his legs round. I watched as his sores immediately clung to and soaked the new bandages, and wondered how in the world he was ever going to get better.
Dr. Llama looked at me and said, “Have you read bible?”
“Book of Job? Man has many troubles?”
I nodded, and numbly emphasized, “many troubles,” trying to pretend like I felt the weight of imagining that kind of sorrow, when really that kind of sorrow is far too large to impact my little capacity of a heart.
He smiled at me and said, “But in end, God give double measure”
In front of me was a man who had nearly lost his legs, which he’d actually probably prefer to the constant pain. His
family had not communicated much less visited since he was admitted two years ago. He has one loose tank and one piece of cloth for a skirt and one pair of sandals. And the doctor, who’s been there for 20 years, was responding to this man’s loss, though indirectly, with a smile and a notion of some future fortune. To be honest, I could not help but wonder if I should have been impressed, or really sad. I hope that man will inherit some kind of great fortune for his trouble – that some kind of blessing will find him. But is that it? Is that kind of hope of something far-off and terribly teetering the line of “maybe” all that he has? Maybe I don’t know hope very well, but I am not sure that would be enough for me for the here and now if I were in his position. Especially without anyone paying me special, empathetic attention.
The more I interact with these people, the more I understand also what Brand was saying when he talked about the way different cultures view pain. Ours views it as some terrifying thing to be avoided at all costs, and yet the more you avoid it the larger it grows. With sorrow so inflated, we cannot hardly move for fear of popping, so paralyzed we stay until we find the courage to let sorrow be sorrow and make room for some joy to happen. Or for anything to happen really. This culture views pain as a part of life. It’s part of the cycle and no one can avoid what is natural. Sorrow here does not become inflated, and in fact wouldn’t need to be, for there is reason enough for it to be large enough by itself. With sorrow available at every turn, they cannot think to deliberately enter into it, for what purpose would it serve? Would empathy not only pulsate the depths of their loss? So something besides their sorrow they choose, even if it means they have to choose it every day.
I do think the house of sorrow inside us is too the house of joy. But for these people, there is also a house of joy across some border that takes a hitch and a hike. And it may be empty when they first arrive, but they would rather hike and wait then never have gone at all. Maybe it’s courage or maybe it’s fear that makes them go. And maybe what drives me to stay is but a mix of the two also. Either way, what I am finding is that their grief is harder to get to than I thought. For their joy and their gratitude are too great.