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!

Chittaranjan

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 combinaton 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. 
Usha thanking the families

Laurie Kelley accepting gift

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 interveiws with our scolarship winners

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, especailly the recipients of our new scholarship fund

Sukdev is learning
computers

The Save One Life scholarship fund is unprecendented 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

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.

Agitated mom, son with hemarthrosis

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, motobikes, 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.

Sheikh
Street Vendors

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
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

Lesson in civility from the poor
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.

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.

Rickshaw

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

Mumbai: Hemophilia Camp, “Children Free of Pain”

Welcome to Camp HemoSOL! 

Mumbai is a megacity
fringing the Indian Ocean, an ancient seaport that once beckoned to European
ships and sailors seeking to trade spices. It was called Bombay then, a major
city during colonial times, when India was the exotic jewel in England’s crown
of captured countries. Now it is the financial heart of India, the largest
democracy in the world, a fascinating contrast of topography, culture and quality
of life. Especially in Mumbai, where Slumdog-Millionaire shacks sprawl like
weeds alongside million-dollar highrises owned by billionaires. 

Traiditonal greeting
Mumbai: a city of contrasts




And here I am,
sleeping in a canvas tent on the outskirts, showering with chilly water each
morning, housed with about 40 boys with hemophilia who are attending Camp
“HemoSOL” for three days, organized by the Hemophilia Society Mumbai Chapter,
which cares for an astounding 1,250 persons with hemophilia. The air is sultry,
mosquitoes swarm at dusk, sweat seeps out of pores and dampens our clothes. But
the real atmosphere is joyous and electric, as these children generate megawatt
smiles and endless laughter. Camp is where they come together as friends, play,
swim, strategize at chess even while Anand, the reigning world champion and
from India, battles a Norwegian in Chennai, where I’ll be next weekend.

Chess is a national passion

We took a two-hour
tour through Mumbai’s clogged arteries and Indy-raceway-like highways to
finally arrive at the quiet and remote campground—really a 16-acre function
facility for weddings and retreats. Rustic by US-facility standards but very
nice for its purpose here, the grounds host tents, a dining hall, an activity
center (complete with a real, taxidermed Bengal tiger), swimming pool. The
tents are roomy, with electricity, a bathroom and even a TV. Behind the
facility snakes a river, to where goats clip-clop for a drink or bath.

Applauding winners of arts & crafts

Many of the campers
are enrolled with Save One Life, the nonprofit I founded to provide sponsorship
funds to individual children with hemophilia in developing countries. I’m
delighted to meet them again, three years after I last came. This is my fourth
trip to India, and I am definitely feeling at home. No longer am I disconcerted
by sights and sounds, which many of my friends call “an assault on the senses.”
No… this is India; brash and bold, busy and beautiful. Yes, there is a staggering
amount of poverty that challenges me literally. How to describe what I see? But
it is a country that has always welcomed me, and appreciated everything I have
ever tried to do to help.

Team Dream Killers create
an HTC out of art supplies

We donate a large
amount of factor to India each year, and now have over 500 children enrolled in
Save One Life. India is the country with the most number of our beneficiaries.
Why? Well, it has one of the highest populations of people with hemophilia; but
it is also a very productive and efficient hemophilia society— the Hemophilia
Federation (India). It was a good risk to launch our experimental program there
in 2001, and it has not disappointed us.
So back to the
Mumbai boys. I have rarely seen such a large group of boys with hemophilia
living in a developing country in such good shape. This is no doubt due to the
success of the Mumbai chapter in educating the boys and their families, and
providing good medical care, including factor. They stand tall, have good
joints and almost none walk with the crooked gait that see-saws the body.
Mumbai has a good chapter but also good hospitals, physicians and access to
factor.
Boys everywhere love pooltime
Judging the arts & crafts

The boys were all at
camp when I arrived Friday afternoon with Usha Parthasarathy, our Save One Life liaison, and Indira Nair, chair, mother of an adult
son with hemophilia, both mothers of grown sons with hemophilia. Also with us
was Balshiram Gadhave, who has
hemophilia, is president of the chapter and in many ways is a driving force
behind the society. We landed, settled into our tents, took a walk around the
grounds, met the boys, and had buffet lunch or moderately spicy rice, chicken
and roti (bread). Over the next few days we would have a self-infusion
workshop, arts and crafts as the boys in their teams each created a table top
hemophilia treatment center out of random items, swim time, food glorious food
(if you haven’t had authentic Indian cuisine you have not lived! Try the
desserts especially), a disco evening where we all danced the night away, a
talent show in which the boys put on excellent skits related to hemophilia, and
an awards ceremony! I received a beautiful award from the Society, and a card
signed by all the boys at camp. One sweetly wrote: “Madam Kelly, you always
mingle with the hemophilic boys lie cream with milk.”

The Save One Life kids at camp

And I was surprised
when they presented me and Balshiram with cakes for our birthdays! Mine was
October 28, his was that very day. Practical jokers all: my candles wouldn’t go
out no matter how hard I blew. They were trick candles!

The highlight of the
camp was a visit by distinguished visitors: Yogacharya Dr. Hansraj Yadav,
professor and Chair of Yoga at S.P. Jain Institute of Management and Research
and two colleagues. Dr. Yadav is a guru, who taught the mesmerized boys
breathing and physical techniques to relax themselves, to re-energize and to
redistribute energy throughout their bodies. Yoga can help with stress and pain
management. It was excellent and each child followed his lead as he
demonstrated 10 simple techniques.
HFI Logo and Slogan

Camp took place
during the Indian holiday Diwali, the festival of lights. At night streets are
lit up, with lamps or candles. At camp, we concluded Saturday night with
fireworks after our ceremonies. These exploding stars reflected in the beaming
faces of so many boys who sincerely expressed their appreciation to the
sponsors who give them $240 a year in sponsorship funds, to the volunteers who
give them factor and education about hemophilia and to one another. They are
all like brothers. They gazed at the fireworks, arms about each other,
comfortable, secure and with a bright future.

Happy Diwali!
Sudha with a Bengal tiger!
Usha and camp volunteers
Laurie with camper

Hindi temple
Prayers at a temple
Learning yoga from a yogi
Learning breathing techniques
Learning how to infuse
Success!
Interview for Save One Life
Happy Diwali!
Supplication
Indira and Usha on beach
Pooltime!

Youth Leadership: Ender’s Game


I changed plans for my blog tonight after burning out from too much computer work to go to a  matinee movie. What to choose from? I could easily recommend Captain Phillips or Rush… both excellent. But I chose Ender’s Game, not expecting too much. It’s received 62% on the “Tomatometer” (know what that is, everyone?), not exactly stellar (no pun intended).
Here’s the plot, which I shamelessly rip off (with added commentary and at least one grammatical correction) from RottonTomatoes.com: 
“In the near future, a hostile alien race (called the Formics, [kind of like a hybrid giant praying mantis/”Alien” critter]) has attacked Earth. If not for the legendary heroics of International Fleet Commander Mazer Rackham (Ben Kingsley) [who has now disappeared, presumed dead, and who is a Maori from New Zealand!], all would have been lost. In preparation for  the [presumed] next attack, the highly esteemed Colonel Hyrum Graff (Harrison Ford) and the International Military are training only the best young children to find the future Mazer. [Why children? Because their minds integrate and process computer simulations faster than adults…]
Ender Wiggin, a shy, but strategically brilliant boy is pulled out of his school to join the elite. Arriving at Battle School, Ender quickly and easily masters increasingly difficult war games, distinguishing himself and winning respect amongst his peers. Ender is soon ordained by Graff as the military’s next great hope, resulting in his promotion to Command School. Once there, he’s trained by Mazer Rackham, himself [who–surprise!—is not dead], to lead his fellow soldiers into an epic battle that will determine the future of Earth and save the human race. Based on the best-selling, award winning novel, ENDER’S GAME is an epic adventure…”
I thought this was going to be a purely sci-fi, CGI, blow up the aliens tale, but it’s much more than that. Yes. It does proceed slowly with the plot, focusing on character development. The real action doesn’t take place until the very end. It’s gotten its share of criticism for a variety of reasons, but… I liked it!
I liked that it’s about children applying themselves, finding value in their studies, discovering a higher calling. It’s a movie about leadership and youth; what does it take to be a “leader”?
A variety of youth leaders are portrayed, from different genders to nationality and races: Ender’s own sister, talented like him in her own right, was deemed “too compassionate.” Another leader, short and muscular, was too aggressive and demeaning, authoritative. You wonder about Ender himself—yes, he’s smart, but can he get people to follow him?  Over the course of the movie, you watch how he develops his own leadership style, and matures into a true leader, demonstrating strategy, psychology, risk-taking, challenging the status quo [his elder leaders], accepting responsibility when things go wrong, and most of all, honoring his own values. These are all important ingredients to making an effective leader. He embodies all three styles of leadership: positional, situational and transformational. For that alone, the movie should be seen.
Especially by hemophilia youths. We’ve been hearing for a long time that we are victims of our own success. When you have aliens threatening the earth (or HIV threatening the blood supply) you can more easily mobilize an army to do battle—and leaders arise from the masses to spearhead change. When things are cool, good, life is chillin’, it’s harder to get people to train, study and implement leadership for when things don’t turn out right in the future. During a crisis is not the time to study leadership for the first time. we’re victims of our own success; we no longer have an alien to fight, or do we?
Healthcare reimbursement maybe? Could be. Those of us educating and fighting for access to therapies, and lowered copays are not the ones who will be needing this in the future; it’s our kids. They are the ones, the “Enders” we need to enlist now. Teach them how to do battle in the Battle Room while we still have our own Rackhams (starring Michelle Rice maybe?) with us? Something to think about.
In any case, bring your child to see this movie, and talk about leadership afterwards. There is a lovely twist at the end that brings it all together as a feel-good movie. Ask:
What traits make for effective leadership? Is it a popularity contest? What hurts about being a leadership? What do you stand to lose? To gain? Who are your child’s admired leaders? If they are stuck on sports stars, broaden their vision of who and what a leader can be. And let him or her know that the hemophilia community has its leaders too… who will one day need the youth to come forward, like Ender, to plot new courses in our universe, to protect our community from invaders, both pathogenic and economic.
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