Save One Life in India

INDIA Day 11 Taking a Train Back in Time


The days in India are flying by in a whirlwind of planes, trains and autos. Usha and I left Durgapur Tuesday afternoon (Day 11) first by car, for a three hour ride back to Calcutta, then by train headed for Bhubaneswar. The Calcutta rail station is immense, a real icon to the British colonial era. Wouldn’t you know, the sky opened up and a monsoon of rain poured down. Everything turned into slushy brown mud. We maneuvered saris, salwar kameezes and four big bags of luggage (with the help of porters!) in the downpour. It was a chaotic scene with thousands of Indians all running about to get tickets and trains, everyone soaked. We couldn’t help but laugh! Little children kept staring at me (big ones too) as I was the lone Westerner among the crowd. Finally we boarded, said good-bye to our dear friend Ujjal Roy, who accompanied us, and then settled in. The train is small, not very clean, and crowded. Our luggage sat in the aisle and I squeezed in the seat with my other luggage, and Usha, for seven hours. At least inside was air-conditioned. Outside was scorching. When we used the restroom, the water from the spigot was scalding! I use the term restroom loosely for it’s anything but restful to use. Often no soap, no paper, and sometimes no toilet! Try that while balancing purse, sari, scarf and yourself as the train lurches.

With every stop, people came and went, and often beggars would board momentarily, looking for money. These are people with no arms, deformed arms, or just children. One beautiful six-year-old boarded and began wiping the filthy floor with his own shirt, pitifully looking up at passengers with palm out, trying to get some money. Sadly, these kids are part of the mafia, which extorts money from them and gets them hooked on drugs to control them.

The train took us through so many rural villages. The scenery leaving Calcutta was one of terrible charcoal-grey slums alongside the tracks, but eventually gave birth to lush rice paddies, palms, red dirt roads, where water buffalo graze and villagers in colorful saris walk with umbrellas to protect from the sun. The sun set on the beautiful India countryside.

We arrived in Bhubaneswar, the City of Temples, around 9 pm, and were warmly greeted by Mr. Chandan, the secretary of the hemophilia chapter here. The mothers had also come, bearing beautiful flowers. We jaunted off to the Crown hotel, an oasis for us after such long and difficult trips. And they have Wi-Fi! (Photo: Usha and I at the Crown. Even at age 57, Usha is stunningly beautiful and no one wears a sari like her!)

On Tuesday we had two family visits: one fairly poor, and the other doing quite well.Deepak is a 17-year-old, who just started being sponsored through Save One Life. I was excited to meet Deepak to introduce him via video to his sponsor. Deepak is a college student, studying liberal arts, and who eventually wants to be an engineer. He lives in a concrete home with several rooms. The number of rooms, and availability of electricity and plumbing often judge wealth. Deepak bikes to work, despite having severe hemarthrosis in his knees. He is a slightly built young man, soft spoken. Mr. Chandan came with us, as did the president of the society, Dr. G. P. Chootray, a pathologist.

I believe what Mother Theresa once said: “The poor have much to teach us.” I find more civility and hospitality in the homes of the poor than I do in the homes of the wealthy. I have been in the homes of many a millionaire and even more, the homes in slums. It’s in the humblest of homes that they welcome you with open arms, even when I have nothing to bring, offer fresh drinks, in this case a coconut with the top lopped off and a straw inserted. They sit patiently, give you the best seat (often the edge of the sole, flat bed), and put the focus on the guest. I always come away feeling bonded to them. Despite the rain, mud, heat, flies, and usual lack of hygiene, the families we visit are personally clean, carefully dressed, and always an example of civility.

Deepak is doing fairly well but we worry about his weak muscular system; his muscles are quite atrophied and he is painfully thin. We recommend strongly physical therapy to boost the muscles, which will protect his joints, and then keep him in school. Later that evening we would give the society the gift of 30,000 IUs of factor—as much as they were able to purchase from Hemophilia Federation (India) this entire year!


(Photo: Ganesha, the elephant-headed god, is a fixture in many cars) As we drove around Bhubaneswar, I noticed how underdeveloped it is compared to the other major cities. This city is the capital of the state of Orissa, which holds 35 million people. You never, ever get over the sheer number of people you see in India. Swarms, hordes, oceans, wave after wave. And the languages? Over 70 distinct and different languages, and over 1000 dialects! This country is nothing short of a miracle of cooperation and efficiency.

As I was in the City of Temples, I had to visit the oldest temple, the Lingaraj Temple, built more than 1000 years ago for Lord Shiva. Stunning in appearance. All about and inside the temple were pilgrims, come to pray. And all about were cows! You may know that cows are sacred in India, and in this city especially, one cannot look anywhere without seeing a random cow or bullock. Like the temples, they are part of an exotic and inspiring backdrop of this fascinating country.

Our day ended with a very simple and intimate meeting with the local families. They are respectful, and deeply grateful. I presented a gift of 30,000 IU of factor, as much as they have had all year. Imagine, 30,000 IU to be divided among 200! How do you do it? As we chatted with the families, we saw swollen knees and contracted elbows. This chapter, though in existence for 18 years, is a throwback in time. It lags far behind other chapters we have seen, and it shows in the faces and joints of the patients. We are dedicated to empower the patients and to raise this chapter to a higher level, and to inspire more patient leadership. I think the families are ready for this. Usha gave an inspiring speech to the families to get involved, and she has the authority to speak this way as she is former vice president of chapter development for Hemophilia Federation (India) and has a son with hemophilia. She’s a powerful speaker, and quite motivating.

We were touched to receive lovely gifts of hand-embroidered cloths, very typical handiworks of this state. As we drove away in the dark, we felt the families were also in darkness about the possibilities with hemophilia. Save One Life will work to enroll more children, and to help these families have a better future.

(If you would like to sponsor a needy child from Bhubaneswar, please contact us at contact@saveonelife.net today! They truly need your help. Only 66 cents a day can change their lives!)

India Day 2: Slumdogs to WHO?

Day 2 – Saturday, September 25, 2010

Today we started with a hearty breakfast and then headed for the slums of Delhi to meet with two families. Usha, Krish and I met with our colleague Indira, president of the Delhi chapter, HFI, who would guide us. But first a bit of sightseeing. Krish had never before been to Delhi! It’s a marvelous city, alternatively orderly and clean, then also, like most big cities, chaotic, noisy and dirty. We toured the India Gate, a stately monument to the fallen Indian soldiers of several wars.

The first family we visited was in a ramshackle riverside slum, sheltered underneath a soaring highway. A sea of blue plastic tarp draping the tops of the many shanties rippled. Parking on the roadside, we stepped gingerly on a beaten path littered with dog, pig and human excrement, and plastic bags, garbage and paper. A ghastly smell rose from the heavily polluted river, causing Krish to cover his mouth with a handkerchief. Up ahead we could see small children scuttling about, a few teens, and many women: bathing the children under an open spigot by the riverside, hanging laundry, cooking over open fires or carrying supplies home. The dwellings are cement blocks, covered by corrugated tin sheets and covered by the blue tarp to prevent rain from dripping in. An enormous sow rolled over in the mud to allow her numerous piglets to suckle while strange looking stray dogs sauntered by, short-haired, wary, thin, and dirty.

I generate a lot of curious stares, but you know what? If you smile and say “Namaste,” putting your hands together in prayer (the traditional greeting) almost everyone smiles. One young girl—so hard to believe she lives there—not only smiled but also spoke English to me. The narrow, crooked alleys eventually bring us to Indu’s house. She is a tiny woman, maybe only 4.5 feet high, 80 pounds, who is the single mother of two boys, Surender and Sikander. I had met Surender in 2005 during my last visit. He never smiled, and had a traumatized look about him. I never forgot him after that first visit. He still had this look, like he could never quite figure out what was happening and who to trust. His younger brother is the opposite. He warmed up quickly and smiles abounded.

The family was happy to have us come, and also shy. Their home? One room, only 8 feet by 6 feet. I think it is to date the smallest dwelling I have ever entered. I couldn’t stand up all the way. One small square cut into the concrete allowed a rusty fan; that was all the ventilation. A plank served as a bed, covered with a blanket. I could barely fit myself: yet all three live there. Surender is suffering from severe synovitis in his left knee, and he lifted his pant leg to show me; his knee is hugely deformed. It was also hot; he was having an active bleed. We gave some gifts, snapped some photos and chatted about the boys.

When it was time to leave, the family walked us back to the road, with me holding hands with little Sikander. To the left, and covering the length of the entire slum, ironically, is the World Health Organization’s massive, modern, city-block size building. WHO of course is responsible for monitoring and improving the health conditions of developing countries. Just one hundred feet away, its gleaming windows, satellite dishes and massive height dwarfed the pitiful slum. A pretty employee scurried into the building, ignoring us and the ill-dressed impoverished people with us. To add insult to injury, the guards yelled at our driver for daring to park in their parking spot, which of course was empty, save us! Welcome to the world of institutionalized development.

We journeyed on to the next home, where my sponsored child lives. This is my third trip to see Suraj Tanti and his family. I first met them in 2001 and we have maintained a wonderful relationship since. The father, Anil, writes to me several times a year, keeping me updated with the children’s progress, and sending their photos. There are three kids: Suraj (19, but who looks about 14)), Chanda (14) and Shashi (12). Their mother Anita, ever smiling, was also present. Shashi inside the 10 x 10 ft dwelling

We ambled down the broken cement path to their home, populated by random goats, and lined with open run offs, through which ran dirty water and sewage. Despite living in a slum, the Tanti family keeps itself immaculately clean. I actually knew some of the way to their house, and recognized the familiar cement walls, wire fence and neighborhood. Their home is also a one room concrete dwelling, with tin roof and nothing inside but a hard board to serve as a bed— no mattress to ease throbbing joints— and one chair. That’s it. It’s the size of a closet.

Since this was my third trip, and since we’ve maintained contact through the years, all shyness has melted away and we are now very comfortable with one another. “How are your children?” Suraj asked in perfect English. That made me happy! Shashi piped in, “And Jak?” (our terrier) We hauled out the photo albums they keep under the bed, and looked through all the family photos I have sent them through the years.

Shahsi was having a bleed, but never complained. I left factor with them, about $10,000 worth (equal to over ten years salary for Anil), as I know the father is highly responsible. A local doctor can administer when needed. This saves them all a very long trip to the hospital. We then took a short walk to the little shop where Anita sells candy, small cakes and pens. It earns next to nothing; Save One Life sponsorships really help keep them going.

Krish videotapes my sponsored India family

We had a bittersweet good-bye: I was so happy to have visited, but we knew it would be some time before I returned. Indians normally do not hug in public, but we made some exceptions for the American guest!

We relaxed a bit back at the house, and took lunch with Magi, and her adult daughter. All the food is delicious, including the wonderful staple roti (bread), and there is nothing like Indian desserts—all sweet and milk-based. The family’s hospitality puts a great face to India.

After such a day, we were not done still: Usha and I packed up, parted with many good-byes, and headed out to catch the 6:00 flight to Trivandrum, on the south western tip of the sub-continent. We flew for four hours, an easy flight, arriving at 10:00 pm. Tropical breezes greeted us, along with Joe, the tall, handsome son of George Tharakan, a man with hemophilia and one of the founders of the Hemophilia Federation. Off to the hotel for a long night’s sleep.

India is an amazing country with huge potential. By all rights it could be a superpower, given its young and increasingly well- educated people, which is one of its best resources. But it’s hampered also by its huge population, much of which lives under the poverty line, and by a government that has other priorities. We’re seeing progress in hemophilia, at the government level, and also at the patient level, through programs like Save One Life.

The India Odyssey Begins

Indira, Usha and Krish

I feel like I am in the movie Eat Pray Love. India: where eating is a pleasurable ritual to welcome a visitor like me, where praying is sometimes the only thing left when you suffer a bleed without treatment, and where love abounds when we bring donated factor and funding from Save One Life. It’s Day 2, and I am in Trivandrum, on the very southern border, right on the Arabian Sea. A thundercloud is rolling in, and I expect to be deluged with a monsoon soon.

I’m here as part of a site visit and check up for our nonprofit Save One Life. This is a child sponsorship program for those with hemophilia in developing countries. Despite all our best efforts and our lobbying initiatives, we simply cannot wait for governments to one day buy factor for its bleeding disorder patients: children are dying and we can do something about it right now. Our approach at Save One Life is to match sponsors in developed countries with impoverished children and adults in need in developing countries. I’ve seen it over and over in our 11 partner countries: $20 a month can actually change a life for the better.

With “Magi,” our gracious host

India was our first country to enroll, and is our biggest country partner, with 315 beneficiaries. I’m trying to visit as many as possible. I’ll be visiting about 10 cities in 17 days, logging over 19,700 miles by plane, auto and even overnight train. Totally worth it.

I arrived Thursday night after a smooth 15 hours flight to Delhi, the capital, and was met warmly by longtime friend Usha Parthasarathy, mother of an adult with hemophilia, and our Save One Life liaison in India. Usha worked for many years with the Hemophilia Federation (India) and seems to know everyone. She is dedicated, tireless and totally passionate about helping to improve the conditions of those with hemophilia in India.

We were so fortunate to be able to stay, free of charge, at the lovely home of the mother-in-law of Dr. Shipra Kaicker from Brooklyn, New York, whom I met at our fundraiser in NYC earlier this year. She sponsors a little boy in Delhi (whom I met) and her generous offer helps us to save money. She also visits Delhi and helps patients there medically. There are so many angels like her and Usha in this community, I feel like I live in heaven!

with SOL beneficiaries at Lions Hospital

On Friday we visited Lions Hospital, and were greeted by my dear friend Indira Venkataraman, a 78-year-old who also seems tireless in her quest to help her patients. Indira’s adult son with hemophilia had just died earlier this year, but despite her grief, Indira has not nor will ever quit on her patients. She is always in the clinic, always pouring out her love and concern to the boys.

Krish supporting Andy Matthews’ blog!

With us was Krish, a 36-year-old with hemophilia from Chennai, who has become an important link to all beneficiaries. Krish is the first international employee of Save One Life—and I foresee the day when we are employing people with hemophilia in many countries to run our growing programs. Krish has a full time job in advertising and marketing, but spends many nights each week, working up till midnight, to help us compile reports on individual patients, ensuring funds are distributed and coaching chapters on how to implement the program. I was thrilled to meet him, and was so impressed with his intelligence, education and above all, dedication. He is so passionate about Save One Life! His enthusiasm really gave me a huge energy boost and affirmed that all our hard work to make Save One Life reach the poorest of the poor on this earth has been effective.

With Amit and mother

A group of patients gathered to meet us, among them the child I sponsor, Suraj Tanti. As this is my third trip to India, it was delightful to see him again. The initial awkwardness of meeting from years past has melted away to a feeling of reunion, joyful and enthusiastic. Usha, Krish, Indira and I spent the afternoon meeting with each family individually, taking photos, chatting and answering any questions they had. Yes, it’s very time consuming—a combination of doing social work, journalism and administration. But what a joy, to hear how sponsorship funds have helped keep a young boy in school, or helped a family get medical treatment.

Jittender

One of the boys I recognized instantly was Jittender. I met him first in 2005, and he had a haunted look to him. We immediately got him a sponsor, but the sponsor eventually couldn’t keep up the payments. Jittender lost his sponsorship for a while. This really bothered me. Recently, our own chairperson, Chris Lamb, sponsored him, and Jittender this day looked great, and happy. He has put on weight, his joints look good and best of all, he is going to tourism school! He has a future.

After all the interviews, it was time to return to the house, change gears and then go to the Annual General Meeting of the Hemophilia Federation. Delhi is about to host the Commonwealth Games, and I have never seen so much construction! We maneuvered through rush hour traffic, and arrived at the event location. It was wonderful to see the heads of India’s 65 chapters, many of whom I have met over the past 10 years, in India and overseas. It was such a happy reunion! Dr. Maganti, Raghu, Siddhartha, Dr. Devila, Dr. Suresh, Dr. Ranjani and Dr. Ghosh, Rashid… I only wished I could have stayed longer.

After an opening by Mr. Roy Chowdury, the chairman, I gave an overview to all the chapters about Save One Life. While many chapters are now enrolled with us, eventually we’d like all chapters enrolled. I presented the statistics: 315 beneficiaries enrolled, which means we are transferring over $60,000 dollars to India annually. At least 85% of this goes directly to families; the rest goes to the chapter to help offset administrative costs. Patients get money for food and transportation (always a major problem in developing countries). Krish also gave a report on how the program is implemented, how rigidly accountability and transparency are maintained (meaning, Save One Life is only for those nonprofits that can uphold our very high standards). Afterwards, Krish said he was deluged with requests to join by the Indian chapters. That’s good news, but first, we realized, we must get the 200 children on our waiting list sponsored. You can see their photos and names on our website at www.saveonelife.net.

With Priyanka

One of my greatest thrills was to finally meet in person someone I’ve been corresponding with for months about solving problems. A beautiful young Indian girl rushed over to meet me… Priyanka, a brilliant university student with a major in psychology, who also happens to have VWD. We had been planning to meet for a long time, which was finally here. We both felt like it was a dream, come true. And it was! Priyanka hopes to one day work with HFI when her studies are complete.

Our first full day in India was busy and satisfying. We had a late night meal with “Magi” (Mom), Dr. Shipra’s mother-in-law, and crashed… only to be awoken at 2 am with monstrous pipes being dropped, one by one by one, just overhead as Delhi prepared for another day of laying the foundation of a huge highway. Delhi… the city that never sleeps!

Please check in later! Remember this is a 19 day odyssey and I will be posting amazing photos, stories and hopefully videos about my journey through India…See this photo of a preview and check back in a day or so…

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