I'm back in Kathmandu, Nepal after 18 months, and still there are so many signs of the massive earthquake that rattled the country on April 25, 2015. The 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.
I'm here with the crew from Believe Ltd, who will be filming hemophilia B patient Chris Bombardier as he meets with the Save One Life program partner, the Nepal Hemophilia Society (NHS), and patients, and prepares for his Everest attempt. Chris's wife Jessica accompanied him and will trek with us to base camp. She and I will stay two nights, then come back to Kathmandu while Chris stays another month, acclimating for the big climb. Should Chris summit, he will be the first person in history with hemophilia to conquer Everest. With 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 and humanity.
First stop today, Tuesday, March 28, is the Bir Hospital, where I’ve been three times 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.
It’s different 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.
I learn there are 573 registered patients out of an estimated 2,500. 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).
The nurses slipped silk scarves about our necks and greeted us with “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.
We chatted with him and learned he had to travel 3 hours to reach the 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.
Patrick asks us to redo the entire visit for the documentary! We have to regroup in the 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.
I chat with another young man there, who I had met in 2015: 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.
To lighten the conversation, I ask (on camera) do you… ride a 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.
After 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.
On the way back I witnessed a tender moment seeing Patrick 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.
Wednesday March 29, 2017
Today was filming at the temple day. 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.
I eventually walk up to the next 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.
Chris is a little self-conscious with a crowd staring, cameras in his face and a boom mike over his head, but who 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!
I watch the Nepalese light incense 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?”
Finally, Patrick, always with a smile and optimistic air, has our tickets and we enter. Old, beaten, the square is a relic of palaces and princes from long ago. Piles of bricks mark the way, old woman sit on wet rugs to sell souvenirs, and hundreds of pigeons swarm one small square. Rob is fascinated with them and takes excellent shots. A massive stone carving of Kali Bhairav dominates anther square, and it’s stunning. Bhairava is called a protector, as he guards the eight directions of the universe. In all Hindu temples, there will be a Bhairava idol. The Hindu faith is very complicated with gods taking all sorts of forms; but the stories are beautiful and the god manifestations are so interesting.
Despite all our differences in culture, religion, ethnicity, location, we have one major uniting thing: hemophilia. Chris, as a person with hemophilia from the US, represents the ultimate life that the Nepalese could one day have: freedom from disability, life with factor available, hope to accomplish their dreams, which could be as basic as just going to school or university. Chris's dream is to reach the summit of Everest and eventually finish the Seven Summits. I think he embodies the Nepalese proverb "Aim to fly and touch the moon together", or in this case the summit of Everest!