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.

LOVE!

Dave

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.

There are broken-tile mosaic floors and walls all over Anandwan. They're cheap, easy to clean, and colorful.

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.

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.

One of the fingerless lepers doing her job: peeling onions. Her prosthetic leg is behind the bucket. She can really fly on these onions.

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.

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."

A morning portrait of a well-fed leprosy patient.

This woman is usually quiet and doesn't show much emotion, so we don't really know what's happening for her.

One day the gents were getting their massages and everyone was happy and smiling. Sometimes that happens.

Jen nicknamed this man Popeye, which is so perfect. Craig massaged him and said his muscles are hard as a rock.

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.

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.

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.

Adorable deaf boys, with volleyball in the background and the deaf girls in the right rear.

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.

My favorite hyperactive deaf girl. I've got this kid's fingerprints all over my camera lens. She's adorable. And hyper!

Zohar, from Israel, is one of the coordinators on this work retreat, with her husband Nathan. They are the founders of Sangha Seva, (www.sanghaseva.org) which focuses on "meditation in action." She's in this photo with some of the blind girls.

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. 

Band practice.

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. 

This little one wasn't going to get any closer than she had too.

My blind friend with the abscess under his arm getting treated by Mousie. Be glad I didn't choose a close-up shot.

That's a beautiful Grandma right there!

Gabby gets a massage from one of the old ladies, while bed-ridden Jyoti looks on.

(The End)

Volunteering at Anandwan, Forest of Joy

"The good you do today, it will not last. Do good anyway.

If you give the best you have, it will never be enough. Give your best anyway."

 ~ made famous by Mother Teresa (edited)

"I sought my soul, but my soul I could not see.

I sought my God but my God eluded me.

I sought my brother and I found all three."

 ~ source unknown; the favorite quote of Baba Amte, founder of Anandwan

Steve Martin used to begin his live comedy show with "I like to start the show by doing something impossible: I'm now going to suck this piano through this straw." Today's impossible feat: I will now describe to you what it's like to volunteer at a mostly-leprosy community in central India. As I write these letters I always hope to provide some kind of full accounting of an experience, and it's never looked as hopeless as it does right now. Volunteer work of this sort has a way of stretching you, finding your edges, building great walls around your comfort zone, and then watching those walls crumble, brick by brick. The subtle-me says you can't even accurately describe the experience of sipping a cup of tea. Caring for wounds of leprosy patients? Why do I even try...

We're staying at the lovely oasis, of sorts, of Anandwan, which means Forest of Joy. It was founded by the bigger-than-life Baba Amte, a compatriot of Gandhi, who was born wealthy and had unending luxurious alternatives laid before him. As a fearless young man fighting the British for independence, he found himself fleeing from the horror of the "living corpse" of a dying leper. He was shaken to the core by his reaction, and after returning and caring for the leper's last three days on earth, he resolved to dedicate his life to the care and empowerment of India's lepers. This place is built on principles of dignity, equality, hard work, and the intrinsic value of humans, regardless of their status, wealth, or number of fingers. "Work builds, charity destroys" is a core Baba Amte principle.

There are 18 of us volunteering, including the two retreat organizers, and we're working two shifts a day, for two or three hours each. Among the many possible roles, most of us have chosen between wound care, playing with the deaf and/or blind kids, and giving massage and  attention to the people in the old folks home. Inexplicably, I've chosen to start the day with dressings wounds, waking at 5:30 a.m., roughly four hours earlier than my normal get-up-ya-lazy-bastard wake-up time. In the afternoon a group of us are taking mostly old folks out on wheelchairs trips to the grave site of Baba Amte and his wife.

A continuing theme on the retreat, and our biggest struggle: what really helps? What's the "best" thing to do? How could I be most useful? The short non-answer: it's helpful that we're here, mostly for the message that the lepers and other outcasts are worthy of our time, attention, and love; AND we're doing very little that will have any kind of lasting impact. That's way too simple a summary, but there was a long discussion group on this topic last night, and it's not going to be summarized in a sentence or two. (But the retreat's happening again next December, and you're welcome to join and figure it out for yourself!)

I'm treating wounds under the direction of "Mousie," a lovely and healthy leper with permanently bent fingers, at the old folks home. Mousie doesn't speak a word of English, but that doesn't stop her from talking to me in Hindi or Marathi, the local language. At first I felt incompetent and useless, but now that I'm getting better at applying bandages, I'm only feeling useless. Mousie lives here, has for years, and will be dressing these wounds six or seven days a week until she's too old to continue. Soon enough I'll be laying on a beach somewhere complaining about the cost of airfare to some other exotic location. She doesn't need me. At the same time, she seems happy that I'm there, and we've developed a smooth work relationship. The giant burn the length of one woman's thigh is too complicated for me, so I mostly watch, but when someone comes in with a deep but clean wound that covers a quarter of the sole of their foot, she motions with her finger slightly to indicate what to do.

I'm probably at risk of objectifying some of the patients, but damn, these are some cute grandmas. One lady is about four feet tall and her foot looks about the size of the palm of my hand. There's a one-legged no-fingered two-toed lovely with an artificial leg who's full of life and has a sassy grin. I think in a parallel universe somewhere we're dating. I don't know how the relationship is going but I wish them well. The least attractive of the leper ladies, a hard fought contest to be sure, is one of my favorites. She has a snaggle-toothed grin with random missing teeth, no fingers, and she can't stop drooling for some reason - but she has such a lovely and gentle way about her. I said in the last letter that I was dealing with a mix of love and revulsion. As I thought might happen, when you get used to the wounds they seem less important, and it's easier to see the residents not as lepers who need help, but as people. It's amazing what they are able to do, but like old folks everywhere, they can use a helping hand. 

If you do come next year, which I expect, (just say yes,) what I've written above may not be your first impression. There is some incredible suffering on display here. As Dr. Vikas, the son of the founder told us the other night, the mission of the organization is to close this place. Virtually no one comes here to live by choice. They've come because they've run out of choices. Lepers are still shunned by society and forced to leave their homes and villages. As he put it, "It's a social catastrophe that brings us here."

So on this Christmas Eve, you have much to be thankful for. May you recognize it. Eyes to see, a roof over your head, food, friends, your health. And fingers to join together in a "namaste," the traditional Indian greeting that means I recognize the divine in you.

Too much love, hardly any revulsion!

Dave

It's a portrait-filled newsletter, people, so get over it. I'm making up for lost time when I couldn't as freely take people pics in Europe. Are these two stunning, or is it just me?

We came for the dancing competition, but stayed for the endless speeches. Then we left before any dancing happened. This is so typical for Indian official events.

Meet Jyoti, who spends literally 23+ hours a day laying flat on her back in a women's dorm at the old folks home, because there's no other place for her. She has severe arthritis (I'm not sure what kind) that prevents her from being able to straighten her legs. Her arms are stick-thin. Jen took it upon herself to get her upright and in a wheelchair and outside for maybe the first time in six months. How is it that she's always smiling? How can that be?

In this guy's parallel universe, he's playing sax for a blues band. Here on earth he's an eye patient with cool-cat shades.

A leprosy patient sitting in the sun.

Another leprosy patient.

I like this old guy. He's all in one piece, but pretty feeble. I've tried to talk him into a wheelchair trip with no luck so far.

All the rooms are dorms, with 8 or 10 beds in each. They have almost no personal possessions, and there's no sink or toilet in the room.

She's one of my regular patients in the wound clinic. Lovely thing.

This woman is blind, sitting in the sun with her girlfriends and chatting away. The women are SO much more fun than the men, clucking and cooing and gossiping. The men mostly hang out in smaller groups or alone and don't talk much.

This is Nani Bhai, with the palm-sized feet. The end of her foot wobbles from side to side in a way it's not supposed to.

She doesn't always look so fierce.

Another heart-breaking story. This is Neesha, who was literally dropped off at Anandawan when she was about three years old. She's now about 10, blind and mute, but able to recognize the doctor's voice and ask him for chocolate. Jen and I have taken her out for walks several times. She lives in the hospital, of all places, because there's no place for her.

Where's Waldo? That's another Dave in the background, from England.

Some of the wheelchair crew at the Baba Amte grave site. One of the old women just cried and cried when she came to the grave. He's really revered by the people here. He died in 2008 and his wife only earlier this year. (Laurie is from the U.S., David from England, and Yvon is French.)

The best work job: giving the old women massage and oiling and combing their hair. Less thrilling: Nathan on the right trimming fingernails and toenails.

Jen (The Tower of Love), Neesha, and Jenny from Singapore. Notice the home-made wheelchair with a standard plastic chair as the seat.

Sorry if this is disturbing, but this sweet old guy can't close his eyes because of leprosy. A skin has formed on his left eye, and he's blind in both eyes. I gave him a little massage today and he asked me to sit on his bed next to him. He's actually really cute. (Maybe that sounds funny looking at the photo.)

Warming herself in the morning sun.

A local young man invited us to visit his village for a few hours, and six of us went along.

I didn't want this little guy to cry, but I was happy to take his picture while he did.

I think this kid was in the last newsletter. He and his sister are great fun.

This little girl loves to have her photo taken. She's a beauty.

Adorable!

The lovely Dana from Israel, one of the retreatants.

This is how metal rods are cut the old-fashioned way.

The cousin of our host in the village, standing in front of a purple door. We'd just finished a delicious meal prepared by the family.

(The End)