Save One Life in Nepal

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:
https://lakelley.smugmug.com/InternationalTravel/Save-One-Life/Nepal-2015/51907135_ww8cL6#!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.

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.
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.
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