Kathmandu, Nepal after 18 months, and still there are so many signs of the massive earthquake that rattled the country on April 25, 2015.
air quality remains poor: my throat feels raw and my eyes water. Our team wears filter
masks strapped to our faces, to protect our lungs. The city at night pulsates like a
living being: through the streets motorbikes, cars, rickshaws, trucks flow,
belching out waste, laced overhead by a gnarly grey network of telephone wires
and cables at each street corner.
all the camera equipment, and Rob Bradford (photography), Jess, Chris and I in another, so Rob can
film. I enjoy their wide-eyed first look at Nepal with all its helter-skelter traffic
previously. I first came to Nepal in 1999 for an assessment visit, then returned in 2000, when my company funded a medical conference. I was so impressed with the NHS then. And more so now. The NHS became our second program partner for Save One Life solely based on their ability to get the job done right, and fast. They are a crackerjack team and work hard to help their patients.
traveling with a film crew this time. I’m used to moving fast and ducking in and out. But
with about 200 pounds of camera and sound equipment, we have to move carefully
and cautiously. The hospital is still in disarray following the earthquake. It’s dark and uninviting. But the hemophilia treatment ward is brightly lit,
clean and orderly. No patients are there at first, and while the crew films,
we chat with the two lovely nurses.
A high number registered! About 200 make regular visits to the HTC, also a
high number. The center is now open 24 hours a day, which is excellent. They have a small
fridge, under lock and key, for factor. Inside is the Biogen/WFH donation of
Alprolix and Eloctate. This donation is absolutely revolutionizing care,
because it provides consistent product availability, which allows for planning, which leads to a
changed mindset. (I will write more about this in the August issue of PEN).
“Namste!” as we each entered. The ward was upgraded! Freshly painted, with new
offices for factor storage and for the nurses’ office; it looks excellent. A freezer held
fresh-frozen plasma, something you never see in the US; this is for patients
with rarer factor deficiencies, or for when there is no factor.
Then a patient walked in: 18-year-old Bibek, a handsome, tall young man,
slender, with an apparent elbow bleed. Despite what must be searing pain, he
smiled broadly, was calm and accepting, gracious. It’s how the Nepalese are:
deeply ingrained in each seems to be a gentle approach to life, respect for
all, and profound civility. They have much to teach the world about how to get
along with others.
HTC for one injection of 1,000 IU, not even enough for his lanky frame. And the
elbow bleed started the day before. He didn’t put ice on it because there is
none where he lives. Still he smiles; his face is placid and open, inviting.
His English is excellent.
hallway, then enter again, replay every conversation and act. We joke it’s
Bollywood and we should sing and dance our way in. Think the ending of Slumdog Millionaire! So we comply and redo the entire entry, greeting,
conversation. I ask them to include the photo of the mom who died in the
earthquake, while she was assisting in blood donations. She’s a true hero.
Ashrit. I regret that I didn’t recognize him at first. We chatted, and he
lifted his leather jacket sleeve to reveal a clawed hand: Volkman’s
contracture. Repeated bleeds for four years have left his left hand useless,
and in a permanent grasp. The saddest part is that he loves to play guitar. I
ask who his favorite guitar player is and he rattles off a long list: Jimmy
Page, Angus Young, Jimi Hendrix… “Slash?” I ask. Oh yes! He’s amazing! So we
share stories of guitar players and music, and he knows how to play Sweet Child
O’ Mine (one of my favorites). He even learned to play with one hand and had Jess and me listen to a
recording on his phone. It’s beautiful. He has talent. He also shows artwork, a
pencil sketch of a child, which is beautiful and haunting.
motorcycle? And I picked at his leather jacket. He started laughing, and I said
I know you Nepalese boys and your motorbikes! He said he used to but not any
longer. Such a sweetheart. He needs surgery. The
main problem? He has an inhibitor. Life has dealt this young man a double blow
but still he smiles and has dreams. I want to help him get surgery.
the Bir Hospital we drove to the Nepal Hemophilia Society office, in the
residential district. Some wiry teens were playing cricket in the street; birds
chirped, the sky was overcast and the air cool. Inside was crowded. They had
built out the office, including a new cold room, to store the donations from
Biogen; this means they could easily handle our proposed 4 million IU donation.
Manil Shrestha (also a patient) and his team are doing a great job. We asked questions, Believe Ltd. filmed… all good material for the documentary.
Mani suggests we go to “KFC,” which
we all think means Kentucky Fried Chicken. We scuffed across the dusty street,
to the main street, with cars, motorbikes and trucks bulleting past us. It’s
very dangerous to cross. Up the high curb (we have to help one another) and
into KFC: Kwik Food Café. I’ve eaten here before. The bathroom sported a squat
toilet, which is actually hard for patients with hemophilia to use–just think about it. Nepalese food is excellent and we down dumplings (called momo),
French fries, noodles, vegetables and Cokes. The talk is happy and light, and
everyone has a good time.
chat with Beda Raj, a board member and also patient, and hold hands, which is the custom here among close male friends. Patrick is a rising star in our community: driven, ambitious, articulate, with a kind heart and compassionate soul. He
lost his 18-year-old brother Adam and it has impacted him greatly. Afterward,
we head for the Shanker hotel, and have dinner together at 7 pm. Everyone has Everest
beer and I have wine, and we share stories from the day.
March 29, 2017
It was rainy, which was disappointing, but then the air was remarkably cleaner
and easier to inhale. We start our day in the dining room together, and I enjoy
a breakfast of eggs, croissants, muselix (delicious), fresh watermelon and
mango, and steamy masala tea. Everyone is obsessed with their photos and we compare them.
Then off to Swayambhu, the “Monkey Temple,” close
by. We draw a crowd because of all the camera equipment. The focus is entirely on Chris; making a pilgrimage to this most famous of temples, in preparation for his climb. I feel very much at peace in Swayambhu. The colorful prayer flags
dance in the wind around the stupas with the painted eyes of Buddha watching. Stray
dogs, their tails eternally curly, strut about in the rain or sleep at the base
of the stupas or even inside the arch of the little temples to escape the rain. Bold macaque monkeys leap and swing overhead, fighting with one another, scanning
for food. They are a rough lot; some are missing patches of fur, and one is
actually missing a nose. One baby has a mangled leg he drags about. Birds chirp
and somewhere a cuckoo chimes.
level, where the gift shops are. The rain is pelting but I have an umbrella and
water-proof camera. I’ve been here twice before and so just enjoy it all. Other
trekkers are here, maybe German. I’m intrigued as always by the Hindu masks on
display. Jess and I meet up and I film her spinning the prayer wheels.
wouldn’t be? He didn’t set out to make a documentary, only to climb the Seven Summits
for a cause–Save One Life. Shy by nature, he comes across as
authentic, humble, and people will be drawn to that. So soft-spoken but a core of steel!
at the temple, and candles at another temple. A monkey bolts up, grabs an
offering of food meant for the gods, and scoots away. They are fast and mischievous. There’s still
earthquake damage, manifested in cracks in the buildings and piles of bricks which is so sad at this ancient of sites. The rain came and went, as we walked about. It took a while to get the tickets, and we stood on a street corner watching all the people walking by. Women with lined faces and colorful but damp saris tried hard to sell us trinkets: bracelets, necklaces, purses. “Good price I give you,” “Madame for you?”
It’s a leg.
With all the shopping we do at Christmas, imagine wishing only for a leg. When I visited Nepal in September, I reported on one of our “boys,” Jagatman. He’s only 26, same age as my daughter Tara. Unlike her, his life is so uncertain and frail. He has hemophilia; he lives in a country that purchases no factor.
|Jagatman at work|
And he lost his leg due to an untreated bleed. Through Project SHARE, we provided factor for the surgery to remove his leg, to save his life. And he’s so grateful to us. Sigh, the fates must be angry. The April 25 earthquake ripped apart his brick home. I stood before the rubble of what once was the home of the Rajbchak family.
But he has a mobile phone repair shop (Save One Life helped get him started with funding) and I saw him eagerly at work. He’s good! Industrious, focused and determined to succeed. It must have taken a lot of courage to ask me to help him purchase a leg. He’s outgrown his current prosthetic; it hurts him. Given the high tolerance for pain these boys have, it must re
ally hurt him. He earns only about $500 a month from the shop, and must pay rent. The leg he showed me in a colorful brochure costs almost $4,000. A fortune. A king’s ransom.
|With brother Monsoon,
who also has hemophilia
But I promised this handsome young man that by Christmas, we’d buy him that leg. What better gift?
And last week we made good. The money was wired and he will soon have his leg. Despite a chronic disorder, limited access to medicine and poverty, Jagatman is beating the odds. His attitude is astounding; his determination like Rocky’s. His focus like a laser beam.
And he’ll never know that the gift he’s given me is so much more than anything I can ever give him.
Merry Christmas to our friends in Nepal, and those with bleeding disorders everywhere!
Great Book I Just Read
Best rock bio I have ever read. Told by the iconic guitarist of the Rolling Stones, Richards almost seems as surprised by his life’s journey as you are bound to be after reading this. Meticoulously detailed, Richards shares his humble beginnings, his teen encounter with life long rock partner Mick Jagger, their rocky road to fame, the drugs, the alcohol… but what makes this bio so different is first, the Stones are one of the greatest rock bands in the world, from the early 60s and still playing! Second, Richards delves into the music: his love of American blues, what he wrote, why, how he got ideas, the chords, the notes, the guitars. This is what I have been wanting to know: how do these musicians create? He’s a voracious reader, loves his library, and lives in Connecticut, a few hours from me. He’s a survivor for sure, and what a story he has to tell. Five/five stars!
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.
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.
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.
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.
speak, and they did, from their hearts.
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!
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
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.
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
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!”
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.
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.
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.
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.
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.
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
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.
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.
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.
Yankees hat on–dreams to be a computer engineer and used my analogy from my speech about having dreams.
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!
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!
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.
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.
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.
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.
it was one of the highest complements I had ever received.
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!
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.
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.
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!
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:
|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.
|Ujol, Guyatri, Binita, Laurie, Barun, Nirmal, Manil|
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|
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.
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
a handsome young boy with a dazzling smile gladly let us take photos.
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
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
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.
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
with questions: where was he when the quake hit on April 25? What happened?
|Ujol and Laurie at Puskar’s home|
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.
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
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.
of the poor never ceases to amaze me.
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|
outside we caught Barun again having a smoke, and kidded him about his painkiller.
Though this time I think he really needed it.
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.
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|
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
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.
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.
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.
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|
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.
smiled shyly. “Because I have two sons.” I realize she wants them married with
their own homes. We all smiled.
|Jagatman and brother Jagatlal, who both have hemophilia|
|Jagatman’s store: a Save One Life success story!|
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!
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.
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.
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.
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).
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.
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.
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.
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
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.
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.
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.”
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.
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.
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.
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.
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.
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
|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.”
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.
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.
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.
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.
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.