Hemophilia Calcutta

Calcutta: Scholars Amid the Squalor

Monday, November 11, 2013 Kolkata

Sheets being cleaned

Have you seen the movie “The Life of Pi”? A phenomenal achievement in cinematography that happen also to be a stunning story about life. It starts off with a boy named Pi from Pondicherry, where I am now. I’ve been in India for almost two weeks, hitting six cities, visiting treatment centers and most of all, visiting some of the families and patients enrolled in Save One Life, which numbers about 600 in India! I’ll get to Pondicherry next week—first, I want to fill in what’s happened since Mumbai.


In last week’s blog, I detailed the hemophilia camp (Camp HemoSOL) in Mumbai. After camp, Usha Parthasarathy, of Chennai, a mother of an adult some with hemophilia, and former VP Development of Hemophilia Federation (India), the national organization, and one of the founders of the Chennai chapter, and I flew to Kolkata (Calcutta), on the east coast, arriving late Sunday night. We awoke Monday morning, November 11, to the Muslim muezzins calling the faithful at 5 am on loudspeakers, and then hearing the rhythmic thwunk, thwunk of bed sheets and towels being slapped across rocks by workers at the massive green pool that stretches below our hotel window. The sheets are hung to dry like stiff, grey banners. I’m not sure what beating them against rocks does. My sheets and towels still don’t look too bright or white.

Admitted for an infusion

Our morning and early afternoon was spent at the new treatment center, a gift from a wealthy patron. It’s stunningly clean, an anomaly in Kolkata, a city besieged with people, cars, and mountains of trash; we meet with many patients. One is a teen with a bandage on his head; his expression is a bit wary. I later learn he is the same boy, age 6, I met back in 2001 when I first visited. He was then an orphan, and the center was raising him. He lived there! Now he is with relatives and looks good. Another boy, sweet faced and gentle, with his mother.

Another, a jolly-faced, round boy, who had been sleeping but they woke him. He smiled deliriously while we snapped photos. Finally another teen whose home I had visited in 2005; I never forget these faces and I’m amazed that he’s here on the one day I visit eight years later.

Laurie Kelley with hemophilia patient

We asked questions about their treatment (mostly cryo and plasma!), passed out toothbrushes we were given by the families of North Carolina (and the Hemophilia Foundation of North Carolina’s Christmas party last year) and puzzles. We met with an older man, 64, with a psoas or hip bleed. He was there with his 16-year-old son who spoke English. The Indian patients are all so nice, patient, polite. Unfailingly polite. Eventually we get to the Save One Life scholarship recipients. These are young men who qualify for a grant of money to help defray the cost of college.

Usha examines a boy with a bleed
Laurie with a new Facebook friend, Ayan!

One boy, Sajid, really caught our eye. His parents have died, and he was short money for the education. He qualified for a scholarship from us, but was still $40 short for tuition. That’s a lot of money in a city like Kolkata. At age 21, he raised his own money by tutoring other students. And he was living on his own. We replaced that money that same day, telling him how proud we were of him; Usha had tears in her eyes hearing his story. This experience made me realize what a difference we were making in these boys lives.

Save One Life’s Kolkata Scholarship Recipients

After the visits with the boys, we took photos; the boys all seemed genuinely happy to see me, and hung around a while to snap photos. I figured they might be dying to get going home. Then Usha and I, along with members of the Kolkata Hemophilia Society, including Ravi Ojha and his son Siddhartha, drove to a restaurant, and had a late lunch. I am not eating much on this trip and my wristwatch now keeps sliding about my wrist as I lose weight. (My girlfriends all want to come with me on a trip when they see how I always lose weight!) The food was very good: roti, chepati, and my favorite— masala tea. After this, we went to visit a beneficiary in his home. Ashish is sponsored by BioRx’s president, Eric Hill, one of many he sponsors with us.


Kolkata has many homeless people who live on the streets

It was not a long car ride, but we shoulder our way through the clogged city streets, and went to the poorer section of Kolkata, though almost all of it seems so poor. Still, this is a fascinating city. Yellow cabs dash about madly alongside ancient rickshaws pulled by white-haired, iron-muscled old men. Lights are string up deliriously here, celebrating the festival of lights, Diwali. So it was nice to drive about at night, breathing in air that was at once cool but gritty, fringed by multi-colored lights, guided by flickering lamps lit at passing Hindu temples, and finally arriving at an alley where Ashish lives. He was waiting at the beginning of the alley, where sweet shop sat, guarded by a generic third-world yellow dog, complete with the mandatory curly tail, eating some crackers.


We were happy to see Ashish, and set off in the dark down the alley, a short walk to his house, with him leading the way. House is misleading; it’s only a 12 by 12 room, big enough for one king size mattress and one cabinet—that’s it. The family sleeps on the bed and on the cold and moist concrete floor. Ashish is adorable, with such personality and expressive face. He wrote a letter to Eric, in English! Then cut a little video for me. I loved this kid at once. His family was sweet and slightly embarrassed to have foreign visitors. The father was not present, but the mother was, and didn’t quite know what to do with herself. The children had no such problem; they giggled, mugged for my camera, and wriggled on the bed in excitement.

Asish, a Save One Life beneficiary

After a long day with too little sleep, I often feel like I want to skip the family visits, which invariably happen during the mosquito-driven night, in grimy places and dark environs. But I never regret going. It means the world to them—a visit from an American lady! And I brought stuffed animals which made them happy. We spilled out into the dark alley after the visit, and headed back to the car, with many waves and good byes.

Back at our hotel, Usha and I skipped dinner, once again, and snacked on the raw almonds I brought from Boston. I compile notes, process photos and turn in. Tomorrow we head for Durgapur, named after the goddess Durga, who brings success and wealth. Maybe for a lucky few; our hemophilia families do not know such luck, unless it’s knowing they have a hemophilia
chapter, some donated factor, and Save One Life. (Next week: Durgapur,
Bhubaneswar and Pondicherry)

Diwali lights


Siddhartha of the Kolkata Chapter with Ashish’s family


Laurie and Usha with Ashish in his “house”: the right and left walls are visible. The room is only 12×12 and houses six people

India Day 9: Hyderabad to Calcutta

Usha and I flew in last night to Calcutta, the “City of Joy,” location of the famous Patrick Swayze movie by the same name, and of course, Mother Theresa’s mission. We arrived quite late at night after a short flight from Hyderabad. Let me backtrack and finish up with Hyderabad. Camp was on Wednesday, and on Thursday, we awoke at 4: 30 am–Usha, Dr. Prasad and I drove to Hyderabad, a 5 hour ride.

We stopped around 9 at a restaurant and had some breakfast: eggs and toast for me, and delicious Indian tea, which while not spicy has some sort of zing to it. Really delicious and milky. Then back in the car, which was a luxurious ride, as the car seems to be new and is covered with terrycloth towels. We passed long stretches of fields, and many villages, all seemingly the same. Buffalo pounded the shoulders, and various roadside shops zipped past.

Entering Hyderabad, it got busier and busier, and then crowded. There are hundreds and thousands of motorbikes. The streets were pulsating with them. Huge buildings, large billboards: Hyderabad is one happening place. We drove to the Nazim’s Institute of Medical Services, where the local chapter heads and doctors awaited us outside. Inside, patients were waiting for Usha and me in the hallway, some eager, some confused. There was quite a bit of nervous energy: while I was speaking to one set of parents, someone would interrupt, start a new conversation, introduce me to someone else… quite confusing! Everyone seemed angling and positioning for attention. And why not? Everyone needs financial assistance and factor, and those we can provide.

All of these patients were really lovely to interview. When I met an obviously Muslim family, I said “Assalam a laikum,” and their eyes lit up in surprise. Just a smile and “Namaste” was enough to get everyone connected. The team served that lovely Indian tea; the only thing is, the dainty Indians serve it in a thimble size cup, while we Americans, especially this American, love to swig it down by the 12 ounces Dunkin’ Donuts size! Appreciating the cultural differences, they served me two cups.

Meeting them one by one, I was able to get the baby smiling, the little boys to relax, and the teens to loosen up. Most families earn about $25 a week, nothing. They really need help. All they want is a chance, a shot at life: the opportunity to go to college, be educated and get a job. The families all want and need help; the appeal in their eyes was plain. Who can help them? Who cares about impoverished patients with hemophilia? If we in the developed countries have no pity in our hearts, and turn away from them, who will help them? I always think, what if that were my precious baby with hemophilia? I would pray day and night for someone to help. I wanted to touch those boys’ souls, change their lives… come back again soon. Who are they? What do they feel? What can we do for them?

Back at the house, we sat outside on the veranda before dinner in the dusk, to relax. We heard the mosque call to prayers. I thought, here we are Christian and Hindu with the Muslim prayer calling out over the city… beautiful… like kindred spirits united against the common enemy of poverty.

On Friday morning, we had a rare day off. We decided to tour the city. We drove to the old section, to a busy bazaar, and I loved it! I hopped out of our car, dodged the speeding cars and motorbikes and snapped some photos. Usha and I checked out a temple of the goddess of wealth, Lakshmi. We visited a dress shop and I had fun selecting a few Indian salwar kameezes—less than $15 an outfit. I was feeling out of place with my Western clothes. We stopped for lunch at a nice restaurant, where I had dhosa and coconut: delicious! Back to the house, pack and we were ready for our flight to Calcutta, which is where I am now.

Upon arrival at 10:30 pm last night, we were greeted our colleagues, Mr. Oja and Sudip Chatterlee, members of the executive board of the Calcutta Chapter. The relatively cool 76 degrees last night belied a brutally hot day today.

I haven’t ever seen much of Calcutta though it was my second visit. I visited in 2005 on another whirlwind visit of India, and only stayed 24 hours. I longed to see more of it, as I only know one part of it and probably not representative. I awoke this morning, opened my hotel window and was greeted by a big green, polluted pond, where workers were, at 7 am, already vigorously beating sheets and towels against rocks; I wondered if my sheets would end up there today?

Calcutta is huge and grimy, and even the paved streets seemed to perpetually throw up a cloud of dirt. Yet I see a lot of progress in the five years since I was last here.

The Calcutta Chapter was only a stone’s throw away, and we zipped off there to met with patients this morning. We interviewed 10 patients in five hours, and I must say, I saw some really great things, and some heartbreaking things.

First the great things: Calcutta was one of our first cities to enroll in Save One Life, and now I can see the payoff. The boys we enrolled eight years ago are now finished with college and getting jobs. They are paying for their factor. Some are even thinking of going back to school for further degrees! Many of them are quite handsome and came to the center to see me, well dressed. For example, Nazbul is now a tailor, even though he is only 18. With the Save One Life money from sponsor Eric Hill, president of BioRx, he bought two electric sewing machines, and earns $30 a week, which is way above what most of our beneficiaries are earning. Previously, he considered himself very poor, but now he is sustaining himself and even buys factor.

But we also met little Mokhesh, age 14 but so slim and tiny. He had chest pains, and he writhed in pain a lot during the interview. He and his father had traveled 5 and a half hours to come here.
We gladly paid for their transportation, and concerned, we arranged for him to have an infusion, as I brought with me donated factor. Without this donation, though, he would have to wait for hours to get the cryo or plasma into him. We had a long talk with the chapter about why they don’t get any donated factor. All over India chapters are finagling to get donations: why not Calcutta? The team didn’t seem to know where to turn to for donations (despite that I run Project SHARE and it’s right on the internet). I think after this visit, we will have them more aware of how to get factor. We also saw a huge need for physical therapy. The boys all have contractures and very weakened musculoskeletal systems. Usha began thinking of ways in which to get programs started.

Above all, I saw connection and compassion. Tanuka, the administrator of Save One Life for the chapter, was our kind of gal—she knew every single patient by name, and all their relevant information. No one else there had the connection to patients like her. With this detail, she could ask better questions of them, and could determine their needs best. When one young man, 29, said he sat around watching TV all day, she said pretty much that’s it—no school, no work, no Save One Life funds. He was given a deadline by which to get his life going again, despite his obvious poverty and disabilities.

One boy who made a strong impression on us was Toten, 21, who lives three hours away. He was very quiet during the interview, until the end. Then he shared with us his dream: He’s attending electrical engineering school, and once he is successful, he wants to help others, to give back. That’s one of the first times I had heard any of our beneficiaries say that, and it pleased us. We feel that with our blessings, we can give back. Poverty becomes less a socioeconomic level, and instead becomes an attitude. If Toten, who earns about $1 a day can give back someday, then we all can.

Next stop Durgapur, a four hour drive!

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