Hemophilia India

Believe in Us: Bhubaneswar and Pondicherry

Greeting patients in Bhubaneswar

We flew in Thursday night (Nov. 14) to Bhubaneswar. I love Bhubaneswar. It’s small, colorful, intriguing, and poor. Paved roads give way to dirt roads; cars give way to bull-drawn carts. Sometimes it seems the poorer the place, the more intrigued and comfortable I am. If I dared to believe in reincarnation, as Hindus do, I’d say I must have come from the slums in an earlier life. I am at home in them, and am drawn to them.

The hotel is nice that we checked into last night. Clean, quiet. But no hot shower, again. Will I never have a hot shower in India? This time it’s because the water heater was “hidden” from view—my own fault. The food in the restaurant is also good. Indian food is just delicious!


Usha and I again pack up toys and factor to share, and Chittaranjan, the secretary for the Bhubaneswar chapter, picks us up at 8:30 am. We go to the medical college where Chitta is attending as a nursing student.

Chitta is an amazing young man. Only 24, but so unworldly mature. He has hemophilia, limited access to any factor, is going to college, doing well, and running a whole hemophilia chapter! He pulled together this entire event today. His demeanor is respectful, but he knows when to push to get an idea or suggestion across. I marvel at his diplomatic communication skills. This young man is a keeper.

Greeting from the Dean of the Medical College

The event was lovely. A large sign welcoming us personally was hung on the wall. A special plaque was given to us both thank us for our help. So many families had traveled from very far away, to see us. We got to meet them all, one by one, and ask some questions related to their lives.

For example, one, Jitendra, is 14 years old. He receives money from Save One Life and spends it on education and treatment. He lives 150 kilometers away. His father works on a farm, and must travel far away daily. The father had an intense countenance, a combination of fear and desperation.

Laurie with young beneficiary of Save One Life

When I asked him what one thing would make your life easier (expecting him to say free factor) he said emphatically and without hesitation: a vegetable selling business, to open a roadside vendorship, to be near his son. Awesome answer. He needs 50,000 rupees to start ($1,000). Through out chat we learned that a storm ruined his house and he now lives in a tent!! He only earns $100 a month. We stressed to our partners that they must inform us when disaster strikes our beneficiaries! We can help this man, and I promise him we will get this money for his business.

We took photos with each child, recorded their progress and needs. The dean of the medical college came in to meet us, and greet the children. After a few hours, a take-away lunch was served, and we set out to do some home visits. One obstacle to our work is language: communication is really confusing here. India has about 70 languages, so when we travel to different cities, we have to speak English, translated into Hindi, translated into the local language and then back again. So three people are needed to ask questions and translate! When 2-3 people are speaking simultaneously, explaining, talking over each other, questions and answers are easily misunderstood. We must be über careful when interviewing so correct information is taken. Some things are almost a given and are never misconstrued: most families earn about $10- $40 a month, nothing when you think of what they have to buy. And add hemophilia on top of this… life is a day to day struggle to survive.

This is one reason why education is paramount. When you meet a child in the States, you often ask, “How old are you?” In India, you must ask, “What class are you?” Education trumps anything else in their young lives. Education is a key to a future. This is one reason why we stress that Save One Life monies be considered for funding education costs.

Bikram wants to be a doctor

We head out eventually to visit Bikram, a young man who is sponsored by Save One Life but who needs a scholarship. He desperately wants to attend medical college and needs funding to study for one year, called “medical coaching,” so he can pass the exams to get in. Bikram lives in a clean, new building, but he and his parents live in one small room of this. There is nowhere to cook. There is no bathroom, just a public one down the hall and out a door. There’s one bed and you must use your imagination to sort out where do they all sleep? Bikram never smiles the entire time we visit. I compliment him on the colorful motivational charts I see on the wall.  Set goals. Listen to directions. Believe in yourself.

I tell Bikram we will get him the $1,000 he needs for coaching. Somehow. Believe in us. The mother has tears in her eyes when we explain to her we will help. She offers us some simple food, in the customs of Indians when you come to their home. It is always startling humbling when you are in the homes of the poor, sometimes the poorest of the poor, and they exhibit more  graciousness than just about anyone you know.

Street in Cuttack

On Friday morning, we head to Cuttack, a suburb of Bhubaneswar, about an hour away. It’s a very colorful ride, past temples, roadside vendors, and fruit stands. The streets are a mad scramble packed with cows, bicycles, motorbikes, autorickshaws, trucks and cars. The hospital is a public one, so it is exploding with people. Chitta, Usha and I have to shoulder by a crowd to get in to the hematology ward.

Deepak needs immediate surgery

Our goal was simply to say hello to the director of hematology. He has so many people waiting in line we feel guilty being ushered in. We chat a bit, snap some photos, and then head out to the wards. While at the wards, we come across a huge and shocking surprise. A 16 year old boy, Deepak Das, propped up in a sad bed, flanked by his worried parents. His right thigh is grotesquely swollen, causing his right foot to drop; the skin is stretched till it looks like it might explode. It’s a pseudotumor, Dr. Sudha explains, and he needs an amputation ASAP. This is a complicated case and we urge the staff to consider bringing him to an HTC. They have no factor to do the operation and the operation has been postponed but the boy is now critical. We pledge the factor and any money that can help. The mother starts to cry, and the father immediately sets to praying intensely. India’s culture does not include hugging in public, but this mother, so grateful leans into me and we hug.

Usha, our amazing liaison for Save One Life

Our last city is Pondicherry, in the south, a short drive from Chennai. We flew to Chennai for two days to attend the 25th anniversary celebration of the Chapter, where Usha is from. She is delighted to be home. But Sunday morning, back on the road with a two hour drive to Pondi. Pondicherry is a former French colony which still retains a French flair about it. It’s pretty and quite different than the rest of India. It has temples, museums and a botanical garden (you know this if you watched Life of Pi). It seems to me there are however more stray dogs here than anywhere else. India is ravaged by stray dogs much as the dogs themselves are ravaged by fleas, ticks and skin disease —ubiquitous, yellow mutts with the mandatory
curly tail, as though they were all sired at one time by a common set of parents. Half are lame; many are lactating. They are starved, wary and are everywhere. They set their eyes on me, Usha says, because they know I look different and they are hoping for better treatment from a foreigner. They do tend to approach me and follow me.

We meet with a large group of children at the clinic, and do a home visit in the evening. on Monday, my last day in India, we go to the beach with Dr. Nalini, who runs the clinic and the chapter. Usha and I stand at the Bay of Bengal, enjoying the fresh sea breeze and watching the European tourists. We take in an ashram, where people go to study yoga, and best of all, an ancient 15 century Hindu temple. We removed our shoes, and walk in gingerly, speaking in hushed tones. I witnesses how Hindus pray; their unusual gods, with elephant and monkey heads, blue faced, adorning the walls.  I joined a line to enter a sacred room, where everyone was praying. An oil lamp was brought out by a half-naked Indian, and devotees waved their hands in the flame, then touched power to their heads.

A blessing from an elephant

Exiting, I was surprised by an enormous pewter-colored elephant, ornamentally painted and sporting an ankle bracelet, just outside the temple door. When you offer it a coin, it snatches it then touches your head in blessing. Not having any rupees, I think I gave it a New York City transit coin.

We were tired after the day; the weather was steamy and humid. We drove back to Chennai, straight to the airport, after saying our good byes to Nalini. We stopped at a roadside place that was good, and ate some Northern Indian food and masala tea, summing up our to-do list for the week. I was kind of happy to be back in my traveling clothes—black pants, white sleeveless hiking top—but sad to leave. On this my fourth trip, I am used to India now, comfortable. I never get sick, and love the food and people. I do get mentally drained trying to sort out the languages, cadences and interruptions, but am ridiculously pleased overall with how Save One Life programs are functioning and are actually making a concrete measurable difference in patients’ lives.

Back towards Chennai and the city was crazy bustling at night. Thousands of roadside vendors, shops, motorcycles, autorickshaws. It’s a sensory overload. I am in awe at the amount of humanity in one city. And yet the airport was all but empty, giving Usha and me the time and space to say a bittersweet good bye. We are great partners, and compatible traveling mates. I guess it all seems easy when you have one mission, one goal. Much to think about on a 24-hour ride back to my world.

Greeting from the beneficiaries in Pondicherry

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 18: 24 Hours in Mumbai

Visiting the jhodapattis (slums) on Friday night helped us to prepare for the meeting on Saturday with all the Save One Life beneficiaries. Indira Nair, president of the Mumbai Chapter, picked us up at our hotel, and we set out by “cool cab” (meaning, air-conditioned) to the King Edward Memorial (KEM) Hospital. Indira told me it’s about 15 minutes away but translated from Indian time, this meant about 45 minutes. Traffic is surreal: I feel like a lone foreign protein loose in a throbbing bloodstream of auto rickshaws, cars, trucks, taxis, motorbikes, bikes, scooters and buses that feeds the heart of this ancient city Mumbai. Everything comes slamming to within inches of sudden collision, but miraculously no one is injured. Imagine that we pay for this kind of thrill when we go on roller coaster rides!

At the hospital, a room full of families warmly greet Usha and me. What a lovely reception! They all stood and applauded, Muslims and Hindus, mothers and fathers. We sat at the front of the room, and Balshiram Gadhave, who came with us last night, acted as host and introduced us, thanked us for the funds from Save One Life, which everyone in the room receives quarterly.

Balshiram gave a magnificent motivational speech. He told us how he grew up in a rural village with no money, and hemophilia. He also suffered from polio and was left partially crippled. He didn’t even have the opportunity that these families have today: factor and support from Save One Life. He said a few years ago he couldn’t even speak English. And now? He not only survived but also is successful, because of his positive attitude. He believes in possibilities, and told the children that they have support, factor and now money, and they can be anything they want to be! When filling out the Save One Life forms, he asks the children what they want to be when they grow up and they say “Scientist!” or “Engineer!” he says yes! You can be whatever you want to be—even though these are children from one room homes earning less than $1 a day. He knows it can be done because in the room were young men who had done it. It was a very inspiring speech.

I was able to see our program in action, as each family today would be receiving their quarterly installment. I said a few words about how much American families care about their children, that we see their poverty and suffering, the difficulty in obtaining factor concentrate, of even surviving day to day. But that we are so proud of them, especially the youth like Javed and Yatish who are going to college and are the future.

Usha and I were given beautiful bouquets of flowers, and then a big surprise for me: a sari! A bigger surprise: the families wanted to see me wear it. So I was whisked off to a deserted lab room, where I quickly changed into my first sari. Now, saris are probably the most beautiful of all female attire. Every woman, no matter her shape, looks elegant in one. It is made to flatter the female form. However, it takes skill in wearing one so it doesn’t end up around your ankles! Mercifully, my colleagues pinned it to me everywhere so I felt rather propped up. When I re-entered the presentation room, the families exploded into applause, and I appropriately “modeled” it for them. Moments like these erase all differences in who we are. I was reminded of the last words of the classic American book I read on the plane ride over, To Kill a Mockingbird, after Scout says of Tom Robinson, “…he was real nice….” and Atticus replies, “Most people are, Scout, when you finally see them.” Despite our obvious differences in religion, nationality and socioeconomic status, we all can relate to certain basic human experiences—humor and celebration are some of these we all share.

Balshiram announced that we would hand out the money from the Save One Life donors, and each child happily came forward, shook my hand and received their quarterly installment, $60 US. It may not seem like much, but if I told you that you were going to get a month’s salary for free, from some kind benefactor, I am sure it would brighten your day, especially if you had to pay for factor out of pocket. Twenty-four beneficiaries came one by one, beautiful children of India, who did nothing to deserve this disorder, or the economic plight they are in.

Afterwards, I encouraged the families to speak out and share their experiences as a group. For the last two weeks, Usha and I had spoken to each child individually, which could take up to five solid hours a day. Today, we sadly didn’t have the time. And this was one of our biggest turnouts! Amazingly, the mothers began to speak. While they spoke the children played with colorful balloons I had brought.

They had questions: will there be a cure? How can I get factor? My son needs surgery… some simply said thank you for thinking of them and for giving them support. Their thanks were heartfelt. Usha was especially engaging during this time: she has a natural rapport with families that no one can compete with. She also understands the Indian medical system, each different state, and indeed each chapter as she has had so much experience with Hemophilia Federation (India). And she has compassion galore. Above all, Usha and I were assured today, as in every city we visited, that Save One Life is a) working well, 2) much needed, 3) changing lives for the better.

After the family rap session, lunch was served for the families. We noted that quite a few families came from far away. This has been a constant theme in India: impoverished families will travel up to 12 hours to come to an HTC, all the while trying to manage a child with a painful bleed, and no access to medicine. Usha offered them reimbursement for their travel, including some rupees for their food. Our hearts break when we hear tales like this, but this is exactly the daily living challenge that Save One Life is meant to address.

While they ate, Dr. Ghosh, newly elected president of HFI, and Dr. Devlia Sahu, hematologists at the hospital, joined us, and then gave us a tour of the medical ward. It was filled—and almost all with inhibitor patients. What was going on? There were two, sometimes three patients in each bed, which are only an old metal frame and a thin plastic mattress. No TVs, no games, no room, just endless days of waiting and treatment, and pain. If only you, the reader, could experience this and see this! You would never take anything for granted in your life again. How little these patients, even this hospital, have!

One boy has a CNS bleed, factor IX (very hard to get in India); another two boys whose grandmother kept saying the only words in English she knows, “Three… three..” Three family members who need help. She thrust their x-rays at me, pleading for help. Another man, who looked okay, till he lifted his shirt. His swollen and distended abdomen was loaded with blood, rock hard, which had become tumors, and spread so much they cracked his pelvis. The lovely man, in pain, gave me a Namaste and smiled, and allowed me to take his photo. A little boy with a urinary problem lay naked on a bed, rigged up to cryo. He smiled at me and let me hold his hand. Another with a fracture, another with a head bleed… on and on… it was quite shocking and the needs are great in just this one ward alone.

One case really caught our eye: Suraj, a 16-year-old who came from 12 hours away. I have never seen anyone with hemophilia in all the 24 countries I visited, with such bad joint problems. We took a video of him walking, and he was in obvious deep pain. No crutches, no wheelchairs… they just all endure it like soldiers.

This had been such a joyful and simultaneously sobering visit. But the overall theme was gratitude. They are so grateful to their American sponsors, and we were so grateful to the Mumbai Chapter for providing such a meaningful visit in such a short time. Only 24 hours in Mumbai and I feel like my soul has been branded forever with their pain and perseverance. As always, “The poor have much to teach us.” Indeed, even though I am now home, hemophilia patients from India keep invading my dreams.

Before we returned to the hotel to pack up, we visited the Mumbai Chapter’s office. It was a short walk from the hospital, and was clean, spacious, filled with materials. We had some of that great Indian tea (I will miss this a lot!), despite the heat of the day. Indira and her team showed us their spreadsheets and how meticulously they maintain Save One Life records. Usha and I were so impressed. We could see that this is how the program is meant to run, and yet, just last year, Mumbai was not running the program as well as we had hoped. Patients didn’t know the money came from US sponsors; things were not being communicated. Now, Mumbai emerges as one of our best program partners.

As we joked, Balshiram pointed out the security camera in the corner, a very rare luxury, to monitor the factor supplies. I joked that I thought this was their security camera, and I pointed to the wall photo of Ashok Verma, founder of HFI, who passed away in 2004. We all laughed, and felt that Ashok would be proud of us all today, to implement a program that directly and immediately touches the lives of the poorest with hemophilia in India, a program that saves lives.
(Photos: Mumbai Chapter team members; scenes near KEM Hospital; the swastika in this form is an ancient Hindu symbol)

Usha and I had a bittersweet good bye at the airport: it may not be easy to spend two and a half weeks with another person, almost 24 hours a day, but we not only did it but enjoyed it. I hope it’s the first of many such trips. Usha wisely noted: when the compassion is there, dedication and a common mission, there is no room for differences, quarrels, disparity or problems. We are forward looking always, to help these children have opportunities to not only live but to thrive.

Laurie and Usha

We have children from India in need of your help now. Would you like to sponsor a child? Please visit www.saveonelife.net to learn more. Only 66 cents a day can truly change the life of a child with hemophilia in India—I have seen this with my own eyes this time.

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 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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