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|
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|
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.
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|
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 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|
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!|
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|
|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.”
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]
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.