Saturday, December 31, 2011

Joy Not Joy: getting involved at the leprosy community

"Do not be daunted by the enormity of the world's grief. 
Do justly, now. Love mercy, now. Walk humbly, now. 
You are not obligated to complete the work, but neither are you free to abandon it."
 ~ The Talmud

Caring a lot and not doing anything: pretty easy.
Caring a lot and doing a little: really, really hard.

There's an analogy here, though you might have to work for it: Years ago my Mother and I went to visit my brother's new house for the first time. As we walked along the front flower bed my Mom said, a little dramatically, "Oh!  So many rose bushes - they are SO much work!" My brother Mike said, "Only if you do it."

Caring is like that. It's not that hard to care. But it's really hard to put it into action - to "do it." For myself I've seen a difference between (1) thinking about lepers from home, (2) seeing lepers as you walk past them on the street, and (3) having a leper's foot in your face at 6 in the morning. (Ah! I love the smell of antiseptic in the morning! Not so much.) We've all moved from seeing the patients here from a distance to seeing them as real people with very real needs. And therein lies the frickin' problem! 

Yesterday wasn't so special, but it was indicative of what happens when you stick your toes into the water of taking action. One of the first days here I saw a blind man with an oozing wound under his arm, staining his white tank top yellow, and I thought, wow - I'm glad I'm not seeing that guy in the wound clinic. Yesterday, as luck would have it (luck, literally) I followed my wound care mentor Mousie into a room where I'd been multiple times and there he was again: relatively young, blind, stick thin, and I braced myself. (It's so not about me, but it can feel like it is at times like this.) Mousie took off the bandage, revealing a deep, open wound about the size of a large egg, with muscle exposed underneath. As she started swabbing it, he started to moan, but she kept going deeper and deeper, under his flesh towards his armpit, and the moan turned into a wail. At the end of every wail he turned it into a song, likely a spiritual "bhajan," calling out to God. His arms were shaking, his legs were shaking, and he was calling out, "Oh, Mousie! Oh, Mousie!," I guess imploring her to stop. I was holding his hand and arm, thinking that's what I would want in his place, and when Mousie finished he stopped shaking and laid down in bed, exhausted, with the rough wool blanket pulled over his head. About three minutes later as Mousie left the room the tough and not-very-friendly medications nurse came in and really yelled at him, twice, when he didn't get up fast enough to take the meds from her. I wished I'd had a blanket to crawl under at that point.

Just around the corner, where the women volunteers were giving massage and doing the hair of the leprosy patients, one of the lepers sat behind a volunteer and started giving HER a massage. Everyone in this big dorm was laughing and in good spirits, and in that moment, all was right with the world. Later we took bed-ridden Jyoti out for her third and longest wheelchair luxury cruise by far. We were all really enjoying ourselves, Jyoti got to see her father-who-rarely-visits, and we felt like maybe we're making progress with her. When we got her back to her room, we wanted to see how one of the attendants uses the floor-level cart to transport people, since we're modifying it for Jyoti's use. An older woman who's been failing lately already has a black eye and stitches near her eyebrow from a fall. The attendant, by herself, got the patient near her bed, and we watched, horrified, as she gave her a sack-of-potatoes heave-ho and dropped her, hard, on her bed. The mattress is only cotton padding, about two inches thick, and it lies on a metal frame. Her mattress happens to be wet with and smell strongly of urine. Oy.

As the four of us volunteers walked back slowly at the end of our long day, we just shook our heads about all that we'd seen and experienced that day. 

But really, it's only hard if you care, and try to help.


OK - more portraits. And no complaining from the peanut gallery. This lovely and stately woman looks like she could be the matron of a powerful family. Instead, she lives in a women-only dorm room in a leprosy community, and she has such bad osteoporosis that when she walks her back is horizontal to the ground. I think it's my favorite photo from Anandwan.
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There are broken-tile mosaic floors and walls all over Anandwan. They're cheap, easy to clean, and colorful.
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A jump rope session at the deaf girl's school. That's Kate from England on the left. Blind girls are here too, and it's so sweet to see how they hang on to each other as they navigate.
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Three of the deaf girls. The one on the right is a beautiful and frenetic thing. Her fingerprints are still all over my camera lens.
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One of the fingerless lepers doing her job: peeling onions. Her prosthetic leg is behind the bucket. She can really fly on these onions.
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This is the lovable, all-boy, unposed, 15 year-old Sandeep. He's the youngest leper I've ever seen, and he had a pretty advanced case of leprosy. He's lost the tip of each finger, and one leg below the knee from gangrene. Then he broke his good leg and needed surgery, so he's now in the hospital until he gets better. People from our group have spent a lot of time with him.
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This happy gentleman definitely did not get the memo on Indians liking their photos formal and non-smiling. He pumps his arms up and down and says, "Yes, yes, OK, namaste, OK, OK."
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A morning portrait of a well-fed leprosy patient.
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This woman is usually quiet and doesn't show much emotion, so we don't really know what's happening for her.
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One day the gents were getting their massages and everyone was happy and smiling. Sometimes that happens.
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Jen nicknamed this man Popeye, which is so perfect. Craig massaged him and said his muscles are hard as a rock.
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The tailor in the men's wing of the old folk's home. My sources tell me he has a nasty wound on his foot.
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This woman is trying to use a tool with a thin wire to clean the kerosene stove in the dorm room. She was happy to get Jen's help.
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Here's the difference between me and Jen. I took her photo, and Jen straightened her glasses and then took her picture. She was walking down the street like this.
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Adorable deaf boys, with volleyball in the background and the deaf girls in the right rear.
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These lovelies are all deaf. The deaf kids are so expressive it's really a joy to communicate with them, even though I didn't have much experience with it.
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My favorite hyperactive deaf girl. I've got this kid's fingerprints all over my camera lens. She's adorable. And hyper!
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Zohar, from Israel, is one of the coordinators on this work retreat, with her husband Nathan. They are the founders of Sangha Seva, ( which focuses on "meditation in action." She's in this photo with some of the blind girls.
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Do you know this man? Cuz I don't! He saw me taking a photo with some of my "ladies" and just horned in on my action. 
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Band practice.
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The riot: Jen, Laurie and I tried to find our 11 year-old friend Durga at a school. The school administrator said, "Sir, we have 3,000 students here!" When the recess bell rang about 2,000 of those kids tried to get to us to shake our hands and get autographs. It got so out of control that they made us go back in the office while they threatened the kids with cricket bats. Really. 
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This little one wasn't going to get any closer than she had too.
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My blind friend with the abscess under his arm getting treated by Mousie. Be glad I didn't choose a close-up shot.
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That's a beautiful Grandma right there!
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Gabby gets a massage from one of the old ladies, while bed-ridden Jyoti looks on.
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(The End)