Durgapur: Civility in Poverty

Durgapur Chapter has its own treatment center

On Tuesday November 12, Usha and I took a 6 hour train from Kolkata (Calcutta) to Durgapur, one of my favorite stops. Why? I don’t know.

Perhaps it’s just the smallness of the city that charms me. It’s poor but colorful,
manageable. I was only there for a day three years ago, but I feel I recognize it and am at home here. Isn’t that odd?

Boarding the train in Kolkata is always stressful. It’s a huge station, with thousands of people. We have porters to help us, and the railway system in India is fabulously on time and orderly. In such a sea of Indian humanity,  I am stared at like something that fell from the sky. Mostly, when I smile or wave, my gazers beam back at me.

The train ride was long, and Usha and I chatted a good portion of it. They serve delicious masala tea, which makes it bearable. But while we are used to our jumbo size coffee cups, tea or coffee is served only in dainty little dixie cup sizes. I am chronically caffeine-deprived. When we arrive in Durgapur, I look up from my seat and Ajoy Roy is already there, grabbing my luggage. It feels like no time has passed since I was there
three years ago. Ajoy has no personal connection to hemophilia, other than his friend, Subhajit Banerjee, who has hemophilia and runs the chapter, yet he dedicates all his free time to helping our boys. Subhajit and I have been acquainted for 15 years, mostly through the internet and at World
Federation of Hemophilia meetings. Cars were arranged and we go straight to the hotel, not far away. Getting all our luggage and ourselves into the small cars is tricky but the Indians are resourceful and clever and somehow, no matter how much we bring, it all fits. This is perhaps the nicest of the hotels we stay in for our entire trip. The air is hot but not humid; sunny skies, busy city, with autorickshaws, bicycles, cars and cows bustling about with the speed of a mad video game (well, except for the plodding but sacred cows).

Usha conducts interviews with our scholarship winners
Sukdev is learning computers

Usha and I wash the train from our hands and feet, have lunch together, taking our time, sort the toys and factor and head to the large and clean treatment center. Durgapur is lucky to have a whole center dedicated to hemophilia. The patients are gathered and have waited so long and calmly for our arrival. Many recognize me and I them. We sit at a table at the head of the room, smiling at the families. Subhajit, Ajoy and other members of their team hover about, ensuring everything goes correctly. They give lovely speeches welcoming us, and present gifts; I present a check for $500. Then we ask to meet the beneficiaries, especiailly the recipients of our new scholarship fund

The Save One Life scholarship fund is unprecedented in hemophilia. I got the idea for it during my travels, when assessing the needs of patients. Over and over, the young men asked if there was any financial help to get them through college. Education is a lifeline in countries like India; without a degree, you do not stand much of a chance of getting good work. The young men are hungry for education, a degree and work; with these, they can buy their own medicine and one day support their families. The eldest son in an Indian family will be expected to care for not only his parents but any dependent sibling, like unmarried sisters.

One of the most interesting young men we met is Sukdev. He’s taking a two-year computer
course at the ITI (Industrial Training Institute). His father is a cook in a small town; they are very poor. He’s a great singer, according to everyone present, and Sukdev bows his head, sheepishly smiling. He had a CNS bleed en route to camp when he was younger. Camp was
his first exposure to life outside his little village, population 400. He
learned about head bleed symptoms from chapter, so when he got a bleed, he knew
what was happening. Subhajit and Ajoy are proud of this outcome. It took him over four hours to get to this meeting. I feel guilty; we give him some money for transportation.
Laurie and Usha with Durgapur families
Agitated mom, son with hemarthrosis

All five young men we meet with are doing well and look good. They have special needs: two need laptops, which we pledge we will try to get for them. After these interviews, we meet with all the families again. The hunger in their eyes—for money, factor, help—is penetrating. We finally meet each one, snap photos, distribute toothbrushes (a gift from the Hemophilia Foundation of North Carolina) and puzzles and other donated toys. One mother becomes agitated and speaks out, tears in her eyes. Her son cannot walk. The staff talk to her to calm her, and some might think she was exploiting our visit, but I tell Usha I don’t blame her. You get no where by being quiet and this is her moment, with a foreign visitor. A big discussion ensues about the child, who observes quietly. The mother wants factor, help.

After a break at the hotel and some quick food, we head out to two homes. These are about a 45 minute ride from the city, into the villages. The roads are made of dirt and are very bumby. We have to constantly dodge oncoming traffic, which includes trucks, motorbikes, horse
drawn carts, cars, bicycles and occasionally a massive water buffalo. The streets are fringed
with vendor shops, which sell everything from vegetables to tires. The sun sets until it is pretty much dark when we reach the thatched home of Sheikh Rajiv. We have to trek behind some other village homes in the dark, through went grass, to arrive at his home. Subhajit has a flashlight and shines the way, warning me not to fall off the path and into the adjoining field. I wonder if there are snakes slithering around.
Rajiv Family

Sheikh lives in a one room  home made of
mud, with a hay roof; the one room is only 12×12 for four people. There is
electricity, but no refrigerator or any convenience of any type. Living here
is primitive. The father works in a rice shop. His office closes at 10 pm and
he bikes back from Durgapur over the very rough, dangerous roads, about 10
miles, which takes over one hour. Every day he does this. And he has a child
with hemophilia to consider. We sit on the bed, which takes up half the room,
and the family is excited and nervous. We ask questions, present gifts to the
two children, and their mother brings in a tray with drinks and wonderful Indian
desserts. I could write a blog just on Indian desserts. They are indescribably
delicious. Despite having already eaten, we taste some of the desserts. First,
because they are great! Second, this is a huge deal to this family. To have
international guests come to their home, and to serve them. It would be the
height of rudeness not to accept something. Despite their poverty, Sheikh is
doing well and looks great. He is well cared for by the society. When we leave,
the village turns out to gawk and then wave us on with good wishes. They love
having their photo taken.

Das Family

Tuhin Das lives just down the street. Indeed, Sheikh’s father comes with us to show us where he lives. This house is slightly bigger with a front entry–but we are still talking rustic and small. Still it’s big enough for a bed, a table, some chairs and a bookcase. The father is a strikingly handsome man, tall and lean with chiseled features. I sought to compare him to some movie star, maybe Clint Eastwood. The inside décor is a riot of color and knick knacks, giving the room a busy but warm feeling. A little plastic table
with plastic chairs is set, and the father ceremoniously and carefully brings
in a tray with more sweets and soft drinks. It hits me how polite and classy
these two families are. I have been in countless homes throughout the world,
including homes of millionaires and homes of the destitute. I have found the
greatest level of graciousness in the homes of the poor. They shower us with
welcomes, with humble sincerity, and put their guests first. It’s always a
lesson in civility on how to treat guests. The father sets our plates with the
flair of a well trained waiter.

He sells vegetables by pulling cart around town. The mother stays at home, with the two children, who attend school. A child with a bleed means the father has to take time off from work, and loses money. He is a day laborer, and his income depends on hustling
vegetables. He earns about $1 a day. He does have a fridge, which the first
father eyes lustily. We discuss what would help each family further, and the
Sheikh’s father would really like a fridge. Imagine if that were the number one
item on your wish list? We told him we can get that for him and in fact, I give
Usha the money and tell her to get him one tomorrow. The mother can use the
fridge to store factor, but also to “rent” out some shelves and earn a little
extra money.
The mosquitoes are also glad we came and

Lesson in civility from the poor
I seem to be the only one being gnawed on. We finally pack up and say our good
byes, and head back on the bumpy road, out of the rural village, back through
frantic Durgapur, back to our quiet and elegant hotel, one room of which is twice
the size of either home.

Great Book I Just Read
Behind the Beautiful Forevers by Katherine Boo [Kindle]

Boo spent several years embedded in a Mumbai, India slum to record the true stories of life as a slumdweller in India. Trash sorters, street vendors, teachers, prostitutes… the slum has a delicate economic and social balance that is easily tipped when disaster stikes, as when one of the inhabitants sets herself on fire, and another family is accused. The book centers on this dramatic and true case, which serves to hihglight the daily struggle of indiviudal families, how they deal with the corrupt police, sway politicians and try to survive. A masterpiece in international development literature. Four/five stars.

India Day 15: The “Jhopadpattis” of Bombay

Today was one of those days when you are so bone tired you think you cannot go on or bear any more. After all, we have been through ten cities in two weeks now, with little sleep, thousands of miles covered, trips on planes, trains and autos, through slums and countryside, but more importantly, listening for hours and hours to the needs and sufferings of those with hemophilia in poverty. After our visit tonight, Usha sat in the hotel room and cried. It was overpowering.

We left Pune (in Western India) this morning after a productive two-day visit. I’ll have to write about that Sunday, and our trip to Chennai. This tour of India is so rich in experiences, that I haven’t had the time to record everything. But let me tell you about tonight.

We drove by hired car for about three hours northwest to Mumbai, formerly known as Bombay, or “Good Bay” in Portuguese, so I’ve been told. Mumbai is one of the world’s mega-cities, with an estimated population of 14 million. You can easily be stunned just by the visual sensations: the city is absolutely pulsating with activity. Street vendors, pedestrians, auto rickshaws, taxis, trucks, motorbikes, bicycles, and cows. All a noisy, polluted, colorful metropolis.

After we gratefully settled into the Courtyard Marriott, we had a quick lunch and set to work, catching up on emails and such. At four o’clock we met in the lobby with Indira Nair, president of the Mumbai Chapter of HFI, who has a son with hemophilia, and Balshiram Gadhave, board member, who also has hemophilia. We set out in a taxi to visit two families.

The streets are choked with traffic and vehicles, and you take your life into your own hands when you choose to cross a street. And I am forever looking the wrong way, as they drive British here, on sides opposite to those in the US. We did cross the street, and stepped into another world, the jhopadpatti.

Jhopadpatti can be used to describe a group of one or two room housing units, laid out in a corridor, or simply to describe the slum. I’ve been to many a slum, but this one was sensory overload. In a distinctly Muslim section, it was crawling with children and street vendors, and everywhere you looked there was something to see: people hurrying by, skinned animals strung up for sale, windows with strips of candy or snacks fluttering in them for sale, women in black burkas, children running loose in packs, a cat munching on something dead, bullocks tied together in a massive herd in a shed, and noise—children yelling, motorbikes beeping… it all hit us like one massive assault on our senses.

Javeed, the boy we came to visit, led us to his humble home: a small, one room cinderblock dwelling, after a ten minute walk down the narrowest of alleys. When I snapped photos of the local boys, who mugged for me, he said in English, “Come. Dangerous here.”

In his home, there was barely enough room to stretch out my arms. Yet he and his younger brother with hemophilia, his mother and sister all live here. They even had just adopted (nothing formal) an infant whose mother died in childbirth and whose father abandoned the family. Think of this next time you feel bad for yourself: hemophilia, limited or no access to treatment, no privacy, no bathroom, no shower, no possessions. Yet Javeed goes to college and will eventually start a life better than this one. One day.

Around the corner we met Yatish, another young man who is actually getting his master’s degree! Intelligent, hard working, he told me he would one day leave the slum and take his mother with him and buy a home. He’s studying business, and I have no doubt he will reach his goals. Yatish’s home likewise is small, probably the size of a walk in closet, but his mother keep it immaculate. Still, as we spoke, I looked at the one bed, the size of a cot, and wondered who slept where? They pay for purified water to be pumped to the home, pennies a day. They pay $1.50 for monthly rent.

For both boys, their fortitude and determination are remarkable. Their ability to survive is admirable. Both are Save One Life boys, and we are so proud of them!

Walking out, I garnered stares from everyone, and the local children all followed me and begged for a photo, which I gladly took. Beautiful children, trapped in a slum, knowing nothing of green fields, sparkling rivers or polished homes. Yet they survive, and in the case of Javeed and Yatish, even thrive.

The slum seemed to spit us out onto the main street, where you truly have to monitor every second and every vehicle to avoid being struck. Dusk was falling, and a group of teens marched by pounding drums and carrying a gilded statue of the goddess Lakshmi, as this weekend is a holiday. All around India exploded in sound, color, noise, happiness and eternal sorrow. We grabbed an auto rickshaw—like riding in a golf cart— and quickly covered our mouths with our scarves, as the streets were filled with cars. The rickshaw is open, and we are level with exhaust pipes. I felt like I was being asphyxiated. If you’ve ever rode “Mr. Toad’s Wild Ride” in Disney World, you will know what the ride home was like.

While the Marriott was a welcomed refuge against the world outside, the world of the jhopadpatti would not leave our heads. For residents and those who visit, there seems no escape. Tomorrow I meet with 22 Save One Life beneficiaries, and then with greatly mixed feelings, leave for Boston.

I’ll write again on Sunday, to finish off my India journals, and tell you about the families we met in Chennai (east coast, last Monday) and Pune (west coast, yesterday).

India Day 10: The Phenomenal Hemophilia Work of Durgapur

I am in Pune right now, in Western India, very close to Bombay (Mumbai as it is now called), but let me back track again to describe my visit to the wonderful city of Durgapur.

On Sunday Usha and I had our driver take us for a three-hour ride from Calcutta on a well-constructed highway to the city of Durgapur. “Durga” is the Hindu goddess of power and wealth. This was a special visit for me, because I had befriended a board member, Subhajit Banerjee, years ago and had promised him on day I would visit his center.

Indeed, many years ago I ran a program that gave aid to hemophilia programs in developing countries, and gave the Durgapur chapter its first international grant of $5,000. They were so appreciative and invited me to come. I traveled to India in 2001 and then in 2005, but had no time to see Durgapur. For this trip, I told Usha that Durgapur was at the top of my list and if I saw no other city, I must get there. Today was the day!

I fell in love with Durgapur the minute we arrived. A big steel city, it nonetheless has a charm about it. It is colorful and easy to drive around. The city was getting ready for puja, a religious festival that honors the goddess, so her images are everywhere! You could feel the excitement.

I could also feel the heat. It was at least 95 degrees. As soon as we arrived we tossed our luggage into the hotel rooms, patted some water on us to cool down and went straight to the Hemophilic Society- Durgapur Chapter, and what a welcome!

Subhajit, President Mr.D.D.Sen and their team had assembled many of the parents and children, and they welcomed us with flowers first, then several children rubbed kum kum and tamaris on our foreheads, a traditional greeting to show respect for visitors. We all put our hands together in the traditional greeting and said “Namaste” enthusiastically. Like a dream come true for me!

We then sat in a well-decorated room, with ceiling fans droning overhead to cool us. So much time and thought was put into our greeting. All the children and patients came forward to bring us roses. Subajit read what I think was the nicest testimony to our work that I have ever heard. Indeed, he reminded me of things I had almost forgotten! We had ties that went back years with this chapter. Subhajit pointed out that almost all the physiotherapy equipment in the room was purchased with our grant. About 20 children were enrolled in Save One Life (and I know personally almost all the sponsors!). He said that the program helped them understand their patients better by requiring them to make home visits: indeed, on one such trip, during a six hour ride, the car got stuck and they had to push it our of the mud. Then, the committee members were chased by wild elephants! It made them realize how hard it is for patients to come to the center for treatment. And yes, this is exactly what Save One Life is all about—seeing the world from the eyes of the poorest patients, to know their needs in order to meet their needs.

After the lovely welcoming ceremony, I was ushered into a small, clean and air conditioned room. There, I began to meet the patients, one by one. In speaking with them, I began to learn of common threads in the fabric of their poverty. For example, the chapter team told me that the public education is so poor, deliberately poor, that students often hire private tutors, usually the same public school teachers! The teachers supplement their meager income this way, and the students get one-to-one teaching at home, a blessing for a child who suffers from hemophilia. All the student needs to do then is take the exams and pass. But this costs money. And this is where Save One Life is really helpful.

Other stories emerged, each one compelling: sometimes heartbreaking and sometimes cause for rejoicing. For example, Paru, who is sponsored by Ed Wilson of Pennsylvania, bought a fridge with money from Save One Life to help store ice. But he also needed to take out a loan of $80 to pay for it. Imagine, a loan for $80! This shows the very low level of living.

Asish is age 5 and factor IX deficient; factor IX is very hard to come by. The father is poor, a “casual” laborer, meaning his work is seasonal. He uses the donated money for his son’s education. When Asish said innocently, like any child, that he would like a bicycle someday, we alternately gasped and then laughed. Someday.

And Biswajit, sponsored by Diane and Kyle, is age 17. He is so painfully thin, and shuffles and speaks in a dreamlike way, that I guessed correctly he is severely malnourished. He was getting his funds for the first time, and he was so very grateful.

But the highlight of the day was a home visit in the late afternoon to Abishek. He is a handsome young man with severe hemophilia A who lives “close by” the clinic. In reality, it was a 40-minute ride down roads filled with auto rickshaws, trucks and motorbikes. He watched the red sun set while a grim, grimy soot filled the air. Durgapur is Steel Town, India and the steel mills belch out smoke round the clock. We eventually navigated down twisting, narrow alleys, so small that we had to back up again and again, and wiggle the van through them. When we could go no further, we then had to walk, attracting quite a crowd behind us, as I am sure it has been a long time, if ever, someone like me had visited. As we discussed Abishek’s case, I deftly dodged fresh cow dung, to put it politely, which was smeared on the crumbling walkway. I felt like I was doing some exotic dance moves in the near dark.

We reached Abishek’s home and ducked inside to escape the crowd of curious boys following us. Abishek is a young man, sponsored by none other than Patrick Schmidt, president of FFF Enterprises. Patrick would be proud to see his sponsored child: Abishek is attending college and intends to be a physician. He will do it, too. He has excellent grades, is well cared for by his hemophilia society, which gets factor whenever possible. And even using such small amounts of factor—he probably gets no more than 5,000 IUs a year—Abishek is in good shape because he uses ice, rests and compresses the bleed. He tried to never miss school. His family is completely dedicated to helping him, and despite living in such poverty, their small one room home was neat and clean. His mother offered us tea, the model of Indian hospitality, which I almost always find in the homes of the poor. We stayed for a while, and then got ready to leave.

As we walked down the concrete path to the street, about 100 or more faces greeted us: all the villagers had turned out to see us in sheer curiosity. Because I am American, white, a female… all the boys wanted to touch my hands, and I tried to shake as many as possible, feeling like a politician. I even videotaped them and they let out a cheer. Usha urged me to hurry into the car as this could turn into a friendly riot, so we jumped in.

The last stop of the day was the home of Subhajit Banerjee, board member of the Durgapur chapter, and a long time colleague. We had a delightful visit, meeting his elderly father and mother, and his children. With us was Ajoy Roy, another board member. Subhajit has hemophilia, and we’ve known each other a long time. Also Ujjwal Roy, former regional director for HFI and a long-time colleague. We had tea, many laughs, and took photos. Their children presented Usha and I with lovely hand made gifts, and I promised to come back and visit their school as a guest.

Durgapur is a model chapter, a true success story where patients come first. Subhajit and Ajoy, along with their team, demonstrate orderliness, discipline, documentation, while also providing solutions to the patients, and knowing every patient personally. I was beyond impressed with how they run their chapter. And it shows in the physical appearance of the patients, who look good. Still, there are deep needs to be met. Poverty in this part of the state is rampant, and families live far away. We’ll continue to support them through Save One Life, which has become a lifeline to many.

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!)

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