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Tuesday, September 22, 2015

Nepal Part 3: "You've Been Saving Us"

Was it the altitude? At 4,430 feet, being in Kathmandu, Nepal is  like being in Denver. It’s enough to slow you down and dehydrate you if you are not accustomed to it. But I thought just do it. Go to see the famed "Monkey Temple." Wednesday, September 2, was my day off.

I took a taxi over very bumpy, twisting roads where vehicles darted madly around us like metal dragonflies. Cars and motorbikes come within inches of one another and somehow avoid accidents. The driver offered to stay and wait an hour, which is all that it took. I recall being here in 1999, but with the April 25 earthquake, this World Heritage Site is in shock. The earthquake caused extensive damage to the temples and buildings. Dusty red bricks were piled up, or avalanched down stairs. Temples had huge cracks in them, with plaster curling off them. Rhesus monkeys scooted up the sides of the temples and into the doorways to steal the food offering left by pilgrims. Incense mixed with acrid odors. And above it all, the eyes of Buddha stare down placidly and eternally from the highest temple.

Thursday September 3, 2015

Today I met with the beneficiaries of Save One Life and presented their money to them.  The families were waiting for me and Laxmi, and I smiled and waved at them when I entered, being casual so they would feel comfortable. Many smiled back. The logistics were wonderful: a beautiful small stage, bedecked in red; a big sign announcing Save One Life Fund Distribution. So many young boys and older boys and families showed up.

We finally got settled, and the ceremony began; there were many speeches and welcomes. I recall Beda, man with hemophilia and president of the Nepal Hemophilia Society, said to the audience, Pain and hemophilia are synonymous." And then, "My mother used to weep a lot, as he recounted his own childhood without factor.

Eventually we had the families speak, and they did, from their hearts.

Mrs. Chaulagain gave a speech about her two sons with hemophilia, Pranit  and Pratik. There was domestic violence, Laxmi translated for me. Her husband used to beat her; how dare she provide not one but two sons with a chronic disorder for which there was no treatment! He eventually left. They lived in poor conditions, and she struggled to raise two boys. She thanks Save One Life and said she benefited from the program and to keep it going a long time!
One father stood and said, Our government won’t give treatment to us!  He said all the hemophilia families are happy with Save One Life. They use the money for school fees.
Mina has a son with factor VIII deficiency; she is very happy with the support from SOL. Her husband lives in another country, trying to earn money to send to them. So this really helps her.

Then Nawraj, a young man, 18, spoke: he said it was difficult to have hemophilia during exam time (which is much more stressful in these countries than in the US). He thank us for  Save One Life. He described his pain, bleeding at night, and sometimes felt it was better not to have been born than to be born with hemophilia. He lost a job due to so many bleeds. "Our government has not recognized us," he lamented, "because outwardly we look normal, so they don’t pay us attention." His speech was so impassioned about suffering. "You’ve been saving us," he said. "It’s because of you. I want to say more, but I cannot express it, the level of pain I felt."

Then Nawraj sang a song that he composed. It was mournful, deep. Loosely translated, he sand, "I’m living alone, crying alone. Because of you, hemophilia…the pain is too much to bear! I’m sad, crying!"

And remember, on top of all this, these families have suffered through a tremendous earthquake that destroyed many of their homes! 

After all the speeches came questions about hemophilia, which Ujol kindly answered. Then the ceremony: we had gift bags for all the kids, courtesy of all the give-aways from NHF just recently. Yes, I shamelessly confiscated about 50 bags from one homecare company, squeezy toys for the kids veins from another.

The kids loved their gifts. The older ones got t-shirts with hemophilia slogans on them (another involuntary gift from yet another homecare company!). And each child received their annual funds from Save One Life, about $240. For some this is a lot of money.

Then I gave a speech! I started by asking what the highest mountain in the world was. Of course they knew; it’s right in their country! Sagarmatha, better known in the West as Mt. Everest. And I shared the story of a young American man with hemophilia (Chris Bombardier) who plans to climb that mountain. We talked about what’s possible, even without factor, and what’s possible with factor. Dreams, goals… and never give up. I asked many children, What’s your dream? We went around the room asking each child: Engineer, musician, teacher… they all had dreams. I told them we want to help make their dreams come true.
Lunchtime was a buffet of delicious local food: rice and chicken. The children played with their new toys, and soon, the families dispersed happily. I too went back to my hotel, happy, moved. Dedicated to these fine families.

Friday September 4, 2015

Today Laxmi picked me up and we drove back to the NHS office, through the blackened air. The pollution in Kathmandu is deeply unhealthy; I often felt like I was hitched to an exhaust pipe. About 33% of the population wears surgical masks outside, and eventually I did too.

Inside the office was a room full of wonderful, handsome young men, all ages 21-35. I was surprised to see Deepak Neupane present; his eyes lit up when he saw me. I first met him in 1999, when he was only 12 years old, and severely crippled. He became the poster boy for WFH, and to this day they still use his image. He has his hurts, is stoic, not overly friendly.  But Deepak is married. It was a happy reunion and he says he remembers me.

One of the boys, Raju, with a shock of dark hair, said, “Ma’am, I have to tell you this. You look like Barbie doll!”  The boys all laughed.
I furiously took notes as they spoke, while Laxmi recorded their names and ages. At the end, when they had finished, I told them my name (they all knew) and said, And I am not going to tell you my age! And the laughed in return. 

Durga Datta Lamsal, age 27, a government employee, is the chair. He's an impressive young man , soft spoken, a rising leader, mature and responsible. I met Ashrit BK, who has an  inhibitor, 26 years old. He received a scholarship from us but is not attending now due to bleeds. His left hand appears to have Volkman’s contracture.

John Bhuyel--who dared to sit in front of me with a NY Yankees hat on--dreams to be a computer engineer and used my analogy from my speech about having dreams.

 I learned that the Youth Committee members are elected  with two-year terms. They organize a blood donation camp twice a year. They are primarily social: sharing each other’s pain and what happens to each other. They hold a Youth Camp annually, just the guys, usually for 5 days, and they have lectures and do social things. This year they visited the mid-Western region and had medics come lecture. 
When I asked if they did physical therapy at home, the whole room groaned and eyes rolled. Oh, I hit a nerve. I felt like the mother asking her sons if they made their bed or did their homework. Yeah, they know what to do but often "forget" to do it. Boys are the same the world over!

One sensitive subject was marriage. In Nepal, arranged marriages are still common. What prospect does a young man have to marry, when he is poor and disabled?  Jagatlal (“Monsoon”) is married but his was a love match. They all agreed it was difficult; the girls often leave them when they see how hard it is for them to have hemophilia. Krishna, a handsome young man with large, soulful eyes, told me his girlfriend left him. It hurts a mother, all mothers, to hear this about a young man.

To break the increasingly somber mood, I brightly suggested a “Love Program” for the Youth Group and they burst out laughing. How the Nepalese love to laugh!

Raju said Save One Life  helped him a lot. They were all very grateful for our help.

At the end, we shot some video of the boys telling their story of the earthquake, which was emotional. Raju confided he was nervous (I think afraid of becoming too emotional) and he talked on and on cathartically. His parents are still living in a tent four months later.  

I learned that they were coming back from camp when the earthquake struck. On the bus, they were frightened; they saw people crying, and weren’t sure at first why. 

Then we did a group shot, me and the boys. I gave them all my business cards, told them they were the future leaders of the Society so learn leadership! And to be mentors for the young ones, who need them. They presented me with a beautiful wall hanging of Buddha.

The NHS and I had a farewell dinner at 7:30 pm, and it was a relaxing end to the work week.  By 9 pm I was tired; we exchanged the gifts, and Beda walked me from the hotel down to the main street so I could get a taxi. He is disabled, and yet never complains. He rode in the taxi with me, so I would be safe. He is a man of few words, but confided, You inspire me. I admire all your work for all the people with hemophilia around the world.

Coming from him, it was one of the highest complements I had ever received.

Saturday September 5, 2015
I awoke at 4:15 am, after waking up off and on since 10:30 pm, but it was overall a good sleep. I hurriedly dressed. I pride myself on being punctual and responsible. I tiptoed to the lobby, awaking the poor guys on duty who were flopped on the lobby couches. And waited in the lobby for my ride. One of the young managers, tall, thin and bespeckled, asked who I was waiting for? When I replied The Mountain Flights tour, he said the ride was coming at 5:45 am. I could have slept another whole hour!
Mt. Everest (Sagarmatha) in the background

I went back to my room sheepishly, lay down and actually fell asleep at some point.  At 5:30 am, back in the lobby, and the ride appeared. The trip to the airport was fast, and the wait was until 7:15. Finally they called our flight-- Buddha Air 101, and I was hurried to the crowded bus which took us to our plane. I didn’t expect much from a quick chartered flight but the plane was pristine. We each got a window seat. Soon we were aloft, and as we pulled away from Kathmandu, I saw the gray, dirty air, which left the surrounding hills only blue silhouettes, become clearer and cleaner, and the land becoming green with rolling discernible hills, dotted with colorful pillow-candy colored houses. We were finally aloft, 22,000 feet and within 20 minutes the Himalaya were in view.

There are no words to describe how you feel. Your heart leaps with awe, with love for these antediluvian guardians of the world, formed in the violence of the birth of a planet. The first jutted straight up above the clouds like a sentinel, far away, like a warning to be careful of the approach of the others. They almost seemed to have personalities. They were majestic, powerful, magnetic. Then there were more and more. I felt like I was gazing upon the Gates of Heaven. 

A silence fell on the plane as we stared at the snow giants. Soon, mighty Everest itself. Distant, remote. I cannot  imagine what it could take to climb it and felt the urge to go to base camp some day!

When the mountains all came within distance it was too much to process. The sharp drops, the edges, the crevices, the seracs. One after another and another. Oh, they are just rocks, but what beauty! What spells do they cast over us that suddenly make us want to be there, climb them even though we know we would put our life at risk?

All too soon we had to return. That evening, I boarded Qatar Airways and left Nepal for the other side of the world.

See the full Gallery of photos of Nepal:!i=4344863638&k=3hmP65P

Great Book I Just Read
Savage Summit [Kindle]
Jennifer Jordan

K2 remains the most dangerous mountain in the world, with a death rate of 25%. Until 1986, only men had summited the Savage Summit. In this book, Jordan chronicles the lives of five women who made mountaineering history: the ones who summited K2. Ninety women have scaled Everest; of the only six women who summited K2, three lost their lives on the way back down. I worried about this book being a glorification of women who climbed K2 (Alison Hargreaves was mother of two children under age 6 who died after summiting), as her sympathetic and rather feminist intro set the tone. But I was impressed that Jordan shifted into journalist mode and objectively examined the lives, loves, passions and mistakes of these unmistakably courageous, complex and yet sometimes myopic, women who were compelled to risk their lives... and often lost their lives in pursuit of a dream. Four/fives stars.

Sunday, September 13, 2015

Nepal Part 2: Hope Among the Ruins

Laxmi (our lovely program director of the Nepal Hemophilia
When visiting developing countries, I love visiting hemophilia families out in their homes, something I've been doing for almost 20 years. These can be rough days. It’s hot, we’re at a high altitude in Kathmandu, Nepal; my heart pounds when I exert myself too much, and I get dehydrated quickly. But think of what these families endure, especially post-earthquake. They give me strength.

Binita's house 

Binita and son Aayush
Laurie Kelley and Aayush 

Ujol, Guyatri, Binita, Laurie, Barun, Nirmal, Manil
Society), Gyatri (admin assistant) and Beda (person with hemophilia and president of NHS) came at 10 to get me in a sturdy land rover. I had four gift bags of donated items for any kids we would visit. We dodged the traffic jams of downtown Kathmandu and hit the outskirts. Our first stop was not too far. We parked the car, stepped out. Before starting the ascent of stairs to our first home, I noticed a lowly worm writing in the dust at the foot of the first stair, ants crawling on it. I love garden creatures, worms especially (I guess because they are so helpless), and always am fascinated when I find them. To the horror of my hosts, I bent over and picked it up and tossed it gently into the plants, so it could live. The ants would surely eat it. Laxmi gasped… but Beda said, “It’s a living thing, too.” “Yes, I added, and they are good for the earth.” I made them laugh when I cheered, “Save One Life!” Or worm.

Living in a shed

The house we visited was grand, tall, mounted on a small hill. But it was damaged in the earthquake and now has been deemed unlivable. Binita greeted us; she’s a beautiful woman, but her eyes carry such sadness in them. Her husband, a handsome man in his early 40s, died last year of cancer. This leaves her a widow, never able to remarry according to custom, and alone now with a child with hemophilia in a land that provides no factor, save for donations that trickle in. There are never enough donations for the needs.

She greeted me warmly and we hugged, as if we had known each other for years. We gingerly stepped inside. Cracks and fallen plaster abounded. We climbed the wooden stairs, up to the second and then third floors, until we stood on the upper balcony, which provided a rich view of lush Kathmandu Valley. What a shame; this is truly a lovely house.

Aayush, her son, a handsome young boy with a dazzling smile gladly let us take photos.

Back downstairs and we navigated through the dirt and sometimes mud to Binita’s temporary house. This means she lives in a corrugated steel shed. Yes, a shed. It bakes them in the intense heat, and deafens them when the rains come. There is no insulation or luxury. The carpets on the floor were soaked. We kicked off our shoes at the door, as is the custom, before entering and our feet were wet immediately. Kindly, Binita poured us Mountain Dew, a popular drink here. We sat and chatted. On the wall were photos of her and her husband from when they got married. A beautiful couple, full of hope.

I asked Laxmi about her situation. “Will she be able to remarry one day?” “Oh no,” Laxmi said. “She cannot.” Many women, some young, lost their husbands during the decade-long armed Maoist insurgency, I’ve read. To remarry, even when widowed at the tender age of 21, would be to flaunt the social order. And the pressure can be intense and cruel. It’s difficult for a woman to be single here. Almost impossible. Binita added, “Nine people live here too.” Her in-laws, and more. I looked around slowly. The shed couldn’t be more than 15 ft x 20 ft. Nine people…

Reconstruction everywhere

When we emerged from the shed, we caught Barun (a man with hemophilia who used to be on the executive committee of the Nepal Hemophilia Society) smoking over by a barrel. We tsk-tsked him but he jokingly quipped, “My painkiller.”  We trudged back to the car a slightly different way, and eventually down a paved road by a massive wall of stone. “This had been totally collapsed from the earthquake,” Laxmi narrated. Looking up, we saw men diligently at work, cementing the new stones in place. It seemed everywhere in Kathmandu construction was happening.

Next stop, Puskar’s home. This took us further out away from Kathmandu, into a more rural area, in the Kageshwaori Municipality, a town called Sanchez. The drive was probably not more than 40 minutes. We parked near a field, and then hiked down a dirt road. Up ahead was a terrible site: a brick home, completely collapsed. Caved in, red dusty bricks strewn everywhere, but mostly in a vermillion heap. Laxman, the father, stood nearby. He has a handsome, intense face, with a flash of white teeth and readily smiles. Which is hard to believe when you look at what is left of his house. Puskar, who was at school, is 11, factor VIII deficient.

We peppered him with questions: where was he when the quake hit on April 25? What happened?

Ujol and Laurie at Puskar's home
Laxman said he was outside; no one was in the home, thankfully. Indeed, it seems that everyone considers themselves lucky. Lucky that it was a Saturday, and more people were not in office buildings. Lucky it was not a school day, or more children would have died. Lucky, lucky, lucky. It’s a testament to their faith, their reliance that despite their profound losses, they consider themselves lucky.

Chatting in Nepalese, the father and the group of NHS executives all laughed. I marveled at how he could be laughing when fate has dealt him blow after blow: a child with hemophilia, poverty, earthquake. There’s no self-pity, only perseverance and reliance.
We then took a walk, through an open field that was actually refreshing in the mid-day heat, and then through rice crops, startling green and lush, and then over a creek. I had to jump across. For Barun, it was a challenge as he has contractures in his joints. With helping hands from Ujol, the NHS general secretary and father of a son with hemophilia, Barun made it across. We spied a steel, corrugated shed, just like Binita’s, up ahead. This was Laxman’s temporary home. Inside, much the same as Binita’s: hot, dark with a wet floor. Laxman’s wife was present, and sweetly presented us with Mountain Dew.
The hospitality of the poor never ceases to amaze me.

We chatted a while, and took photos. I asked Laxman who was helping him rebuild his home. With Laxmi (the program director of NHS) translating, he replied, “No one. I’m doing it myself.” He works in the daytime at a desk job, then returns each evening to lay bricks. All this was said without self-pity or arrogance.
Puskar's temporary home

When we walked outside we caught Barun again having a smoke, and kidded him about his painkiller. Though this time I think he really needed it.

We brushed through the rice fields again, and back to our trusty Land Rover. Our next stop was to go to the school Puskar attends. It was a short drive, and an impressive school. With 400 uniformed children, the school provided classes, recreation (including a pool) and hot meals. American cartoon characters were brightly painted on the faded yellow wall surrounding the school. Just inside the main gate, gaily colored statues of Buddha, Shiva and Kali.

I asked the headmistress how she felt caring for a child with hemophilia at her school. “It is fine,” she said in perfect English. “We welcome him. The father told us about hemophilia, and we know what to do.” She added, in more measured tones, “We do ask that the children not push him or hurt him. So he often does not play as much as the others.” While she spoke, Puskar walked up, a gangly 11-year-old, all arm and legs, slim, with pale skin, and large eyes. I’m sure he felt embarrassed being called out in front of his classmates, who were all seated quietly under a canopy, eating lunch.

Laxman and son Puskar
The headmistress pointed to the main building, which had visible cracks. “Normally we have class in there,” she explained, “but due to the earthquake, we have to hold class outside.”

Puskar waited patiently, answered some basic questions in English, which he is studying. But I could tell he really wanted to get back to his classmates! We excused him and he took off like a shot, with all of us admonishing him to slow down! It did no good.

We piled back into the Land Rover and headed for the next house. This was in an area very hard hit by the earthquake. Every single building had damage, and whole blocks were nothing but rubble. The earthquake loosened the plaster, covering the buildings, and the bricks tumbled out like a Lego set dumped from a box.  It looked like a bomb had gone off in the center square. In what used to be a park in the center were tents, and squatters in the them.  

A mother shyly tagged alongside me, holding a wide-eyed baby in her arms. She was dirty, thin, but coy. I find the people are always surprised when you smile back and chat with them. She was excited to make contact; her baby not so much, as he leaned way back away from me. She lived in the tent now, and came from another village that was totally destroyed. I thought ironically, we pay to go camping in tents. Her life is now reduced to living in a tent like a refugee.

On to Danchi, Sankhu. We next arrived at the home of Achyut Shrestha, age 26, who wasn’t at home. He’s a government employee now, and no longer in the Save One Life program; another success! The tall, narrow brick home stood on a corner. The mother, a short, dark woman in a flaming red sari, descended slowly down the stairs. She gave us a namaste, and clasped my hands, so happy to see us. Her daughter was also present, and warmly greeted us. They invited us in right away, something I was not so sure we should do. Up the concrete stairs and ducking, entered the small second story room. Cracks veined every wall, and fresh concrete had just been applied to patch up some. It’s a poor home, and not livable. “We use this in the day time to cook,” the mother explained. “But at night we sleep somewhere else.” The government has condemned most of the buildings in town. I’m not sure what will be the fate of everyone.

Hospitality in the temporary home
The funds donated by Save One Life and the Mary Gooley Treatment Center (Rochester, NY) will help pay for repairs. We walked down the road, out side the town, and saw sprawling hills, green fields and small temples. Next to the temples, more tents; a half naked baby boy toddled outside one of them. We smiled at his charm, but inside felt sad about his condition. Down the road, around a bend, we came to another part of town. The mother explained she was having a new house built. Sure enough, a man, woman and young girl were busy laying bricks. There would be two homes, in one building.

Why two? She smiled shyly. “Because I have two sons.” I realize she wants them married with their own homes. We all smiled.

Our last stop was the home of the Rajbchak family. Here live the parents and two young men with hemophilia, Jagatman (age 25) and Jagatlal (nicknamed “Monsoon”). Monsoon was on hand to greet us and was the only family member who spoke English, and not just English but flawless English. He was charming and intelligent. To the left, the remnants of his two-story family home. Half the house collapsed into the lot next to it. I climbed the rubble heap to have a closer look, and down at my feet, amidst the ruins, fresh, strong sprouts were shooting up. It reminded me of a quote from Robert Frost when asked about the meaning of life. His response, “It goes on.” The sprouts reminded me of the reliance of the Nepalese.

Monsoon, like the others, had no self-pity. How could anyone? They all faced the same problems. The boys’ father appeared, a strong man, who is in the process of also singlehandedly building a new home. It’s also a metal shed, but he is plastering the walls to make it more livable. It’s much bigger than the other sheds. We stood inside for a photo.

We walked down the road to see our magnum opus: a mobile cell phone repair shop. Though humble by Western standards, the shop was perched at a crossroads (perfect location!) and had an open front that promoted watches, toys, picture frames and candy. Inside, visible from the front counter, was a young man busily at work: Jagatman. He’s rather famous to both Save One Life and Project SHARE.

We first heard of Jagatman when he needed to have his leg amputated, result of an untreated bleed. We quickly gave the donation and the operation was a success. He has an artificial leg that enables him to walk about without crutches. So here he is: 26, one leg, hemophilia, with no home. He was busy at work, surrounded by all sorts of electrical parts, wires and circuits. He knew what he was doing. Through Save One Life he received a scholarship to get training in cell phone repair. Then, with our mircrogrant, he opened his own repair shop.

I consider him a miracle, a marvel. He has unending reservoirs of strength. He paused long enough to smile and thank us, but got back to work. I think he wanted to prove to us that our investment was well used!

We all started to relax, seeing the man he has become, tired after our long day, and happy with this family’s enduring success. The boys’ mother brought out fresh yogurt drink, which was lovely after a long day with no food. We entirely forgot about lunch! At least seven hours had slipped but without food.

Monsoon shared, “The shop is doing well. We are making about $500 a month now. But we have to pay rent and for the items.” Still, $500 a month is an astounding figure for Nepal, and for a disabled person, and just after a major earthquake.

When it was time to go, we shook hands, gave our namastes, and waved good-bye. The long and bumpy ride back to Kathmandu was punctuated with laughs and shrieks from the back seats: the young people, Laxmi, Barun, Nirmal, were swapping stories and jokes. I didn't know what they were saying but their laughter gave me so much pleasure and hope.

Jagatman and brother Jagatlal, who both have hemophilia
Jagatman's store: a Save One Life success story!
The Nepalese seem to have great faith, and the most reliant of spirits. It seems nothing can keep them down long. I hope this is true, because they still have much to do in the aftermath of April 25. But they—we—will do it together.

Sunday, September 06, 2015

Phoenix: Nepal Rises from the Earthquake

The Nepalese customs official barely looked at my passport--which contained an official visa that expired the next day-- smiled, stamped it and wished me a nice stay. I arrived Sunday evening, August 30 in Kathmandu, capital of this ancient land. The Tribhuvan International airport was fairly devoid of travelers and I collected my two 50 lbs. suitcases, stuffed with factor and lots of goodies picked up from the NHF meeting we just attended. I walked easily through the airport and out into the humid evening air. It's the monsoon season in Nepal, and I expected sheets of rain and puddles to wade through. Luckily the rain held off!

Beda Raj and Ujol KC, person with hemophilia, father of a child with hemophilia and president and chair respectively of the Nepal Hemophilia Society, showed up at the airport with a marigold garland and bouquet of flowers for me; so thoughtful! We greeted each other with the traditional namaste, by placing hands together in prayer fashion.

The days start late here, which is actually nice and relaxing. I had a 10 am meeting Monday morning at the NHS office, which is in a gated community. Beda picked me up in a taxi, and I had my first glimpse of Kathmandu in 14 years. Much has stayed the same: terrible air quality, leaving my throat raw and my eyes watering. At times you feel as though your lungs are hooked to an exhaust pipe. About 25% of the people were surgical filter masks to protect their lungs. I have one but forgot to pack it. There seem to be more people, heavier traffic, fewer beggars. Motorbikes, cars, rickshaws, trucks all seem to pulse and weave through arteries helter-skelter, belching thick clouds of black exhaust, while above, massive networks of telephone wires and cables lace the streets like ganglia of nerves. And through this thriving body of humanity, the heat felt like a fever.

Laxmi Karki and Laurie Kelley
The shops, buildings and signs are colorful, painting an explosion of sights against the faded blue canvas of the massive hills that encircle Kathmandu. The cows have mostly been removed; there were so many more in 2000, and it always amuses me to see, in the midst of the chaotic race of vehicles swerving and maneuvering, to see a placid cow just standing in the middle of the bedlam, as if it knows it's holy and trusts it will not be hit.

Arriving at the NHS office, I kicked off my shoes per the Hindu custom, and entered. The office consists of  two rooms, a bathroom and soon to be “cold room,” for storing factor. 

The executive staff warmly greeted me. We sat in a ring of chairs, and Beda formally welcomed me, placing another garland of marigolds around my neck. Present were: Ujjol KC, whose son has hemophilia; Manil Shrestha, who has hemophilia; Dilli Adhikari, who has factor X; Beda Raj, president since 2012, who has hemophilia. Shashi, factor IX deficient, treasurer; Guyatri, assistant; and Laxmi Karki, program director.

Laxmi, who I have been corresponding with to arrange the trip, entered graceful into the room. Only 24, she has the responsibilities of a seasoned professional.  She walked out, smiling, reached over and offered a hug. Given her warm and welcoming emails, this fit her style. Next, Dilli glided in, and I have not seen him in 14 years, since I was last here. He looked the same! Minus a moustache and sporting a bit of gray at the temples. Nepalese people are very gentle and soft spoken, mindful of civility and manners at all times. What a contrast to us in the West!

A gift from Project SHARE
Beda formally welcomed me, and slipped a red scarf around my neck, a Hindu greeting. In return, I presented the NHS members with factor from Project SHARE. Then Beda gave a presentation, using the wall as a screen. He put time into this presentation. Beda’s slide show revealed:  There are only 2 diagnostic labs; a lack of coag labs means few patients get diagnosed. There are superstitious beliefs about hemophilia, which often prevent families from coming in for treatment. There’s no medical support from government. While the NHS now has opened 5 chapters in “districts,” there is a lack of resources to develop these district chapters or open more. There are no permanent resources to develop sustainability; in other words, they struggle mightily for funding. They do get factor donations, from WFH, SHARE and FBIS (Swedish society, with whom they were twinned).

A new national constitution is underfoot; indeed, with 25% of the population not in favor of it, there have been clashes with the police from demonstrations; nine policemen were killed by mobs just before my visit. If ratified, the constitution will recognize hemophilia at long last. Hemophilia will be included in the Disability Rights act, as a separate disability—this gives the NHS a leg to stand on for lobbying and promotion. It would be a massive win for NHS to have the constitution ratified.

Then the conversation turn to Save One Life. Nepal was our second country to join—a fact which I had completely forgotten! India was our first; Nepal our second. Why Nepal? I had been there in 1999 and 2000. I saw the dedication and hard work of the then newly born NHS. I believed in the staff, and trusted them. My gut instinct proved correct: they have implemented the program to perfection. We have 86 beneficiaries, a very high number. There are four scholarships and one microenterprise grant. Seven patients have their own businesses.
Ganglia of wires
It has changed lives: four young men got government jobs. There’s a change in the family concept too: they realize others care about them, and it helps families to come in to visit the NHS, be evaluated, and understand NHS and the value of its programs. That’s just what I envisioned when I developed the program.

Conversation then turned to the earthquake. I was curious to know how it affected them; what happened. I wanted to hear their story. It was deadly. On Saturday, April 25, at noon, the tectonic plates under the Himalaya shifted, triggering a massive earthquake registering 7.9 on the Richter scale. For 50 some seconds—an eternity for an earthquake—homes crumbled, buildings collapsed, people were crushed.

More than 9,000 people were killed, and more than 23,000 injured. Continued aftershocks occurred throughout Nepal at the intervals of 15–20 minutes, with one shock reaching a magnitude of 6.7 on 26 April.

Barun, a handsome man with hemophilia I had first met in 2000, opened up somberly. “My first thought was factor: what if they were all lost?” He was honest; factor was the most important thing to him. “It was so hard for PWHs [patients with hemophilia]. We’re taught to get out fast when there is an earthquake. But we can’t run, we can’t get out into the open spaces. We have disabilities. I thought, ‘I should leave my house in one minute as so, but how?’ Our phones didn’t work for a couple of hours afterwards. We couldn’t contact one another; it was frustrating. Eventually everyone lived in tents supplied by the government and relief agencies.” Manil, educated, polished, lived in a tent for two months.

Earthquake damage is seen everywhere
Barun continued. “We don’t store factor in our homes; only at the Society office.” Manil added,  “Our first thought was factor! After two days, we were able to get into the office.” There were 15 other earthquakes, and a recorded 386 aftershocks as of September 2, including one during my visit, that very night. The aftershocks ensured that the population would live in tents until there were no more rumblings. More than three-quarters of the buildings in Nepal’s capital, Kathmandu, were uninhabitable or unsafe.

Some were injured and treated at Bir Hospital. Injured while running outside, to escape collapse. “We were mentally distressed,” admitted Barun. “We needed someone to come and help us, but there was no one. We were on our own.”

Help eventually arrived: factor donations from the WFH, Sweden and Project SHARE. The Mary Gooley Center (now twinned with the Civil Service Hospital) donated $45,000, and Save One Life raised about $15,000, mostly though Facebook. “But there was no help at all from our own government,” Barun added.

When they finally could, with some still living in tents, the executive members hired a four-wheel drive vehicle for $100 a day, and tried to reach families who lived outside the capital city. It took 25 days to see most of the hemophilia families in the field. The tally of destruction was sobering: out of their known 500 members, 63 homes collapsed. Two mothers dead. One eight-year-old sister dead.

Sanu Maiya Kapali
The story that saddened them the most was of Sanu, perhaps because of how she died. Sanu Maiya Kapali, mother of a child with hemophilia, had volunteered at NHS for 10 years, at the care center, helping the children, consoling the young men in pain. She was a mother-figure to all. She was conducting a blood donation camp at a hospital, which collapsed. Blood donations are often done right on the sidewalks, in front of hospitals. This sounds unsanitary and unsafe, but it’s fast and works for advertising as the hospitals are typically clogged with patients, doctors and visitors—all walking by the beds and blood collecting operations. Sanu was outside, collecting blood to help boost the supply of plasma and cryo for the blood bank. Huge slabs of concrete fell from the building. She was killed instantly from falling rubble, along with the two donors she was administering to. Her photo shows a beautiful woman with a flawless porcelain complexion, dignified smile, gleaming white teeth, arched eyebrows. Aristocratic, kind. She left behind two children, one with hemophilia. Everyone knew her, and her death seems to have left a gaping hole in the strong spirit of the NHS. I realize how deeply bound everyone here is to one another.

The NHS has worked hard to help the survivors. To date it has distributed donated funds to 56 persons, and wisely asks for receipts for construction expenses and photos of rebuilding from each recipient, before administering more. I expressed how glad we were to help, but I feared they would need more money before the year was out.

It has been four months since Nepal’s second more devastating earthquake in 100 years. Barun, not one to hide his feelings, confirmed: “You're the first person from the hemophilia community to visit Nepal. Thank you.”

Welcome from the Mother's Group
We were running late, and it takes time to travel anywhere in the crowded city, so we headed for our next meetings, at the hospitals. There are two hospitals serving hemophilia patients: the Bir Hospital, and the Civil Services Hospital. The NHS Care Unit at the Bir Hospital is where most patients go for treatment.  It’s basically a room on the second floor. I had been here in 2000, and not much had changed. It is a typical hospital in a developing country: crowded, dark, concrete.

First, outside, we came upon a tent on the sidewalk with a group of women wearing the same pretty blue saris, and bustling activity within. As Beda tried to explain what was happening, a dark-skinned woman with a red tikka on her forehead fairly attacked me with pleasure, crying, “Welcome! Welcome!” It was Nira, chair of the Mother’s Group. She shook my hand vigorously, and eventually just hugged me. This is extraordinary because hugging is not a cultural tradition. She beamed, “I so happy to see you!” The Mother’s Group was busily signing up pedestrians for  blood donations; here was a blood donation camp happening right in front of me. This was great timing, as I was to learn later, these only happen twice a year with this energetic group.

Barun gets a welcome too!
Like all mothers of children with hemophilia, we bonded instantly. The warmth of the day penetrated our bodies, and seemed to emanate outward. Nira quickly took charge. She marshaled the other mothers, who all welcomed me, and shook hands, some shyly. Making a little ceremony on the spot, she organized the other mothers to stand near me, and then honored me with a yellow scarf, a Buddhist tradition, while Barun took photos. I now had a red scarf, a yellow scarf, red beads and a marigold garland about my neck in the 90 degree heat. I was staring to sweat up a storm.

In the midst of our joyous mothers meeting, a poor woman in a yellow outfit lay patiently on a cot, waiting to donate blood. I worried that we were going to forget about her! But patience is a way of life in Nepal. Beside her was a man, needle in his arm—a doctor! And hematologist no less, donating blood outside in the blistering heat on his lunch break. He smiled for the camera.

On our way up, navigating the stone steps, Beda pointed out the cracks in the walls from the earthquake. Considering the whole building is made of this dense and heavy concrete, it was a bit disconcerting. On the first floor, sections were being pulled apart to rebuild again. Construction was happening everywhere; rubble was everywhere. Plastic walls were tacked up to feign protection from dust.

The hospital was damaged
I took note of the sorry little sign that read “Hemophilia Care Unit,” nailed to the crumbling wall,  and vowed to bring, on my next trip, a new sign. In the care unit, two patients were receiving treatment. A teen and a young boy. Before greeting them, the team was anxious to show us Sanu’s photo. The photo was treated with great respect and placed gently and carefully on a table, hear the infusion tables. We draped the marigold garlands on it and several people clasped hands in prayer and bowed to her photo. To me, to us, she was like a gentle warrior, fighting against pain and suffering, who died in battle.

Getting an infusion

Our next stop was the Civil Service Hospital, a government hospital. We were immediately greeted 
by the friendly and hyperkinetic Dr. Bishesh Poudyal, casually dressed in a red shirt and khakis, which suited him and his high energy level. He works at three hospitals, consults and handles all hematology/oncology cases. The list of his activities and travels were astounding. I had to almost run to keep up with him as he darted through the hospital, giving me the 20-minute tour. He had a plane to catch to the Philippines! At the end, after introducing me to one of his colleagues, he expressed his immense gratitude for Project SHARE. “You’ve given us a lot of factor over time,” he reminded me. “You’ve really helped us to save lives here. Thank you.”
Dr. Bishesh Poudyal with Ujol KC

We convened outside, in the burning sunshine, so bright that I had to wear sunglasses at all times. Clothes stuck to my skin; wearing a skirt is brilliant in these climates, or wearing a salwar kameez, with its absorbent cotton. Unfortunately, I had not packed any of these from my previous trips. We decided, now that it was 3 pm, to have lunch. None of us had eaten in seven hours. A restaurant was close by so we decided to walk. Barun had his motorbike, and looked dashing with his black jacket and dark sunglasses. Beda, who had trouble walking, hopped on back and met us there. We walked through a dirt lot, onto a major avenue, where we were surprised to see a few policemen, in their blue camouflage uniforms, with guns. As we walked we spied more. And more. Pretty soon, we were gazing upon a riot squad, compete with shields, helmets and armored vehicle.

Laxmi, ever sweet, approached one of the policemen who was only too glad to chat with the charming girl. She told me, “There are protesters coming down the street. The police are hoping it is peaceful.” But the armaments proved they were prepared for the worst. We climbed the stairs to the second floor and sat at a banquet and ordered Cokes. I could see from my seat the riot squad. I hope this would not be our entertainment at lunch. Fortunately, nothing came of it. In fact, despite the 60 or so policeman, I never saw a single protester.

Lunch was delicious, an assortment of savory tastes of Nepal. I let my hosts order for me. Wary of too spicy food, I nibbled this and that, only once hitting on something that set the tip of my tongue on fire. Barun sat next to me, and we chatted about his wife, his little boy, how happy he was to know  he would have a boy. “I was so worried to have a girl,” he confided candidly. “Now, there is no more hemophilia. I’m not having any more children.” Abortion was legalized only in 2004 in Nepal; it offers a way to end the transmission of hemophilia in countries where no factor is provided.

Life is challenging enough in a country like Nepal. Compounded with hemophilia and a major earthquake, it is a test of one’s character, fortitude and faith to continue on. I am amazed at the camaraderie and above all the joy that bonds everyone together here.

At the end of lunch, we step back into the heat and wait for our taxi. One mother keeps catching my gaze; I wasn’t able to speak with her because he doesn’t know English, and I don’t know Nepalese, more to the point! Laxmi translated, “She wanted to say thank you for all your help. She came all the way from her home just to meet you.” Our eyes locked in understanding, we clasped hands, and she offered a tentative “Tank you” in English. Then we hugged and took a photo. The power of being with people in person can never be overestimated in hemophilia. It’s so easy to forget that we have our brothers and sisters in need elsewhere in the world, when we are seduced and enticed with all the entertainment and distractions life in developed countries offers. But life here strips away much of this to reveal the basics: connection, caring, sharing. 

Next week's blog: visiting the earthquake zone.

Great Book I Just Read

Into Thin Air [Kindle]
Jon Krakauer

In Nepal, it's tempting to read about mountaineering when so close to the Himalaya. This incredible eye witness account is of the devastating 1996 Mt. Everest expedition in which 12 people died, at that time the greatest disaster in its history. A perfect storm: too many clients, too much competition, confused leadership, uncooperative teamwork between the groups, a massive, unpredictable storm. Krakauer escaped with his life and attempts to detail the various teams, personalities and choices made that may have lead to unnecessary deaths. A must read for anyone interested in survival and/or mountaineering. Krakauer has been criticized by many for the accuracy of his account (which he himself second-guesses at times), but he carries with him unrelenting guilt for not doing more... and for surviving. Four/five stars.