June 2010

Back to Mitch

After reading my blog on Haiti, a colleague astutely commented that the blog about Haiti was so action-packed, that Mitch, the little boy with hemophilia, was all but forgotten in the storyline. I went back and read it and sure enough, the highlight of the day, the trip, was meeting Mitch, the only known person with hemophilia in Haiti. But overshadowing it was the gripping tale of accident and ambulance ride, the victims and death, the sad state of the public hospital emergency room.

It’s an allegory for hemophilia in developing countries: the day to day struggle to survive overshadows rare concerns like hemophilia. People in Haiti, as in other countries, struggle to earn a living, to eat, find electricity, raise a family, access some sort of healthcare. Indeed, it’s hard for governments to care about hemophilia when they have political upheaval, earthquakes and other natural disasters, declining economies, strikes, poverty, widespread infectious disease…I could go on and on.

That’s why it’s up to us to care for those like our children with hemophilia. So back to Mitch.

I was overjoyed to read in Randy Moore’s blog that already he has been to see Mitch again with Dr. Eugene Maklin, on the horribly bumpy and nauseating drive to Jaquesyl (and I am a thrill seeker who loves white water, skydiving and racing). They presented Mitch with a new wheelchair (he cannot walk independently) and a cell phone! And since then Randy tells me the grandmother has called four times, asking for money for food. They had not eaten in three days.

I can believe this. Where they live is remote, and not much grows there. The landscape is hot as can be, scorched, and there are no stores.

We are seeking a sponsor for Mitch. So many people called and emailed after the earthquake to know if they could help–now is your chance. Would you like to sponsor Mitch? Make a one-time donation or “adopt” him with regular donations? We have a great team on the ground who can give you updates and get your funds to him. He has no parents and until now, no hemophilia treatment. We will supply the factor–can you help?

Contact us at once at 978-352-7657 if you are moved at all by his plight and can afford a mere $20 a month.

Randy works relentlessly to help provide medical care to the poor in Haiti. I was pretty wiped out after two and a half days, and he labors 14 hour days, seven days a week.

Thank you for your compassion!

Great Book I Just Read
The Power of Empathy by Arthur P. Ciaramicoli and Katherie Ketcham

An appropriate book to review given Mitch’s situation. Psychologist Arthur Ciaramicoli delves into the definition of empathy, and distinguishes it from the better known sympathy. Sympathy is a bit arm’s length from the distress and emotions of another; it makes you feel pity, and might be what compels you to write a check for Mitch. Empathy requires immersion into the experience of another, and a separation of our own biases, judgments, feelings so that we can empty ourselves and be fully present to understand the feelings, suffering and concerns of another. Empathy requires hard work, active listening, patience and boundaries. Indeed, it’s so complex that it isn’t easily explained. Sympathy is more short-term and empathy is for the long haul. It’s hard to be empathic, and many of us are not taught to be so. This book gives good insights into how you can learn to be more empathic, which can help bring more love and intimacy and fulfillment to your life. Three stars.

Heart and Hemophilia

Standing on top of Chimney Rock, in North Carolina yesterday, I was a bit smug as I watched the skinny twenty-something-year-olds lying on their backs, catching their breaths. At 52, I think I felt pretty good after hauling up this 404 foot mountain in the 90 degree heat. But I took the back seat to friend Kerry Fatula, who forged strongly ahead of me. Cut me some slack: she’s 10 years younger, does running and karate, and has killer quads.

If you don’t think you ever have time to stay in shape, note that Kerry is the mom of four boys with hemophilia (three with inhibitors) and also is the executive director of the Western Penn Chapter of NHF. If anyone doesn’t have time it’s her, but she still makes the time to be in the kind of shape most of us dream of.

We were exuberant being outdoors, sweating like crazy, hiking, and taking in the stunning view of the Blue Ridge Mountains. Nothing like physical activity to clear your head, make your heart pound, blood race, and muscles ache. Coming down was even more challenging. Even the muscles in our toes ached! Kerry and I enjoyed this so much, we started making pledges out loud of all the things we would resume that we put on hold, because we had been “too busy”: rock climbing (me), karate (her), road biking (me), mountain biking (her), hiking (both).

And we both noticed as we strolled through the airports to get here, how incredibly overweight America is. As patients with hemophilia, being sedentary and being overweight are terrible paths to allow ourselves to take.

In “Heart Health and Hemophilia: A New Challenge,” an article found in Perspectives, a new program by Baxter, researchers once thought that the deficiency of factor VIII in hemophilia might actually protect people from cardiovascular disease. But this has never been proven, and instead hemophilia patients, like Americans in general, should seriously examine their activity levels and diet to ensure a healthy heart. As many of you know, about 67% of Americans are seriously overweight, and I wouldn’t even be so generous, especially as I spend time people watching at many airports. It seems to me that about 80% or more of Americans are overweight.

The article says, “For people with hemophilia who do suffer a cardiovascular event, invasive treatments can be more risky, so heart disease prevention is extremely important.” And while there are no specific guidelines for preventing cardiovascular disease in people with hemophilia, adults should approach prevention in the same way as people without it – by addressing modifiable risk factors through lifestyle changes, such as quitting smoking, eating healthy and controlling their weight. The American Heart Associations recommendation that cardiovascular screening begin at age 20. Great idea considering also how sedentary our youth may be living.

The article shares the story of 47-year-old Ron, who experienced an irregular heartbeat and unusually dangerous increases in his blood pressure: Upon arriving at his local hospital, Ron told the emergency room staff that he had hemophilia, yet they treated him like they would anyone else. “They even wanted to give me blood thinners,” Ron remembered. He started looking for a doctor with whom he’d be comfortable while keeping an eye on his blood pressure and heart rate.

Eventually Ron found a family physician that understands cardiac medicine and is eager to learn more about hemophilia. He was comfortable with his choice of a new doctor. “You should have your heart checked before you have symptoms,” Ron suggests. “It might not be as easy as you think to find a doctor who knows both cardiology and hemophilia when you need one.”

Ron continues to stay active. He loves spending time outdoors, including fishing and gardening.

Some people with hemophilia become sedentary and overweight because of their joint damage. Of course, obesity and a lack of physical activity are both major risk factors for heart disease. Get active! Walk, swim, do yoga… the more active you are, the better you feel, the less sugar you crave, the less you weigh and the longer you’ll live. See you at the summit!

(Parts of this blog are excerpted from Perspectives, an educational resource produced by Baxter, which provides insight into opportunities and challenges that are relevant to adults, featuring members of the community who share their personal stories. Reprinted with permission.)

Haiti: Life on the Edge

Friday was an astonishing experience. Our ultimate goal was to meet Mitch, the only known person with hemophilia in Haiti. He lives about 90 minutes away, and first we had a few stops to make for more deliveries from Randy Moore, the nurse who works at St. Francois de Sales, where I am staying for two days while in Haiti. Our ultimate goal is to establish a hemophilia referral and care system. While most of the countries of the world have some kind of hemophilia care, Haiti has been left in the dust. The earthquake seemed to rattle everyone’s attention. With outpourings of help that cannot be used due to lack of a program, I’ve decided that it’s time Haiti join the rest of the world to get the hemophilia care it deserves. But first we must find the patients.

Staying at the house at the St. Francois compound is a bit like being at a college dorm, only with much better food. I awaken at 5:30 am to birds squabbling in the tree outside my open window. A grab a cold shower, and then Randy and I have a breakfast of eggs and cassava, and I feel the heat rising, like an oven being stoked. (Photos: Randy in the medical storeroom; our chariot)

Part of what we did for two days was to meet the people who might help us set up a referral system, to get patients referred to Randy. One of these people is Dr. Eugene Maklin, a general physician with a heart of gold and a dazzling smile, and it seems he always has a smile. He is highly regarded by all in Cap-Haitien. For this trip today, Friday, we pick him up as well as our translator, a handsome 28 year old named Jorgen, who happens to be a big Lakers fan.

Roads are one of the biggest detriments to health care: decayed, pocked, crumbling, with billows of dust that almost obscure pedestrians. There are no rules to the road, Randy says. No median strips, no painted dividers. Garbage borders the streets like some strange edging on the fabric of poverty. You come to expect to see it but I am surprised when two city blocks have clean edges—no sidewalks or any such convenience of course. But the garbage is gone.

We’re jostled back and forth, up and done—taking a video is impossible—and finally we hit a highway, with smoother terrain. We pick up speed. Eventually the road deteriorates again and we doge potholes and motorbikes, popping over speed bumps. I start to feel ill and nauseated. I love speed rides but this is like the Runaway Train in Frontierland on drugs.(Photo: Nate Nickerson of Konbit Sante with Dr. Maklin, Randy and Jorgen)

An hour later we arrive in Jacquesyl, a quiet hamlet, one of hundreds in Haiti. It’s flat, scorching, and estimated to have 12,000 people. But who really knows? There is no census in Haiti and all demographics are estimates only. There are few trees, just brush, and dirt and dust everywhere. It’s very rustic.

The homes are made of branches fastened together with mud applied over them. Some have concrete. The roofs, as always, are corrugated tin, baking the inhabitants like dinner in a kiln.

We stop at the small clinic where Dr. Maklin works every Friday. Every Friday he makes this trip by motorbike. Going by car for him today is a treat; not for me.

As we walk into the rural clinic, which has just a few rooms and a short hallway where families are waiting, Jorgen says, “This is a nice place,” and he is sincere. “It’s a nice town,” he adds, and he’s also sincere about that.

Mitch’s grandmother comes into the consultation room. She is rail thin, about 65, elegantly dressed as though she were going to go to church. This always amazes me about the Haitians: how they can look so nice all the time in their clothes, so presentable despite the heat, humidity and dust. She asks in Kreyol who donated the medicine for Mitch and everyone points at me. She smiles and embraces me.

We head off to see Mitch, who is in school, only about 300 feet away. Mitch cannot walk at all. He uses a wheel chair or is carried everywhere. We find the 10 year old sitting in his antiquated schoolhouse, surrounded by his curious classmates. He’s the only known person with hemophilia in the country.

Thin, handsome in his blue school uniform, he looks at us not terribly impressed. Dr. Maklin explains why we are there; Mitch nods. Then we examine his knee, and see the ghastly scar running from top to bottom, resembling train tracks. I take out a gift bag of toys and hand them to him one by one: crayons, deck of cards, sunglasses, T-shirts and a huge superball. After some photos, we carry Mitch outside and place him in the ambulance. When I get in the passenger side, I am surprised to see Mitch sitting in Randy’s lap in the driver’s seat. Mitch has a cool, confident smile on his face and we take off, with Mitch steering and Randy’s foot on the brake and gas petal, cheered by the schoolmates who run alongside.

We arrive at his home momentarily. I snap a photo of his street and an elderly woman hobbles toward me, scolding me in Kreyol. It’s not culturally appropriate to take photos in Haiti: the Haitians do not want us to focus on their misery, their poverty. Randy diffuses the situation through Jorgen by telling her she’s so pretty, why not take a photo? She smiles and they put heads together for a photo. It turns out she is Mitch’s aunt and now we are all friends.

Mitch is placed in a chair in the yard and his wheelchair is brought out. It’s broken, and Randy pledges to get a new one. The house is nice by any Third World standards. A little porch, concrete, several rooms, a yard. I don’t see inside and imagine the inside is not as nice. More photos and Mitch gets the rest of the afternoon off from school.

We go back to the clinic, so Dr. Maklin can finish seeing patients. I become one of them. I am not feeling well and need to get out of the sun and rest. There are no gurneys, no couch, no privacy. I’m escorted to the hamlet’s parish, and inside find a nice living room. As I sit down in the hard sofa, I jump a little as next to it is a box with a huge spider on it. My escort, a pretty young Haitian woman, smiles at me sweetly, and swats it into oblivion.

An hour of peace, even in a room with no AC or fan, works wonder. A houseboy brings lukewarm Cokes in bottles but I can only manage 4 ounces. I give him the other 12 ounces which he refuses at first, incredulous, but then he gives in and walks away smiling.

By 2 pm Dr. Maklin is finished with the patients and we climb back into the ambulance. Two young boys watch us from the shade of one of the few trees. I only have one stick of gum and one mint left but motion for them to come. They race towards us, and grab the goodies.

Randy is compassionate; he drives only about 5 miles per hour, joking that we should reach Cap by tomorrow sometime. We are all happy and chatting about Mitch, and how we can structure hemophilia care, and somewhere along our get-to-know-you session, discover that Jorgen, Dr. Maklin, Randy and I all like Lady GaGa songs.

With only 20 minutes to go till we reach Cap, we stop at a cemetery to snap photos of the beautiful, pastel-colored tombs. Randy asks Jorgen jokingly if he’d like to go in and take one for us, but he shakes his head resolutely. Haitians believe firmly in spirits, and perhaps Jorgen doesn’t want to offend them.

Ten minutes later we pass a mob—something has happened. Quickly I see a truck, a man lying half under the truck, another man on the other side also lying half under, and blood. Men are swarming the truck and shouting they see us, an ambulance , and wave frantically. Randy pulls over, throws the siren on and backs up. The crowd grows; a few UN personnel stand by but do not get involved. Randy, Dr. Maklin and Jorgen jump out to assist. There’s nothing I can do but get in the way, so I stay in the front seat.

Apparently, the two men were on a motorbike together, and hit the truck. Neither is wearing a helmet, sadly a common practice in most developing countries. Both have severe head injuries. The back doors of the ambulance are swung open and Jorgen jumps in first as each man is clumsily handed to him. He lays them down on the metal floor; the bench seats are locked up. Dr. Maklin also gets in last and just before the doors are shut one of the UN guys snaps a photo of the chaos inside the ambulance.

The next 20 minutes are surreal. The two men, severely injured, lying side by side with Dr. Maklin trying to dress their wounds, and with poor Jorgen being tossed about as the ambulance rockets down the decayed and pitted streets. Randy is focused completely on moving traffic out of the way and taking the men to the public hospital that we just visited this morning. Was it this morning? Time moves so slow in Haiti that it felt like last week.

One man, tall and lean, keeps struggling to stand up, despite his wounds. His eyes are wild. “Couchez! Couchez!” (“Lie down!”) commands Jorgen, but Randy yells back not to bother; the man is delirious and doesn’t know what he is doing. The man gives up and pillows his head on a metal box. The conch shells we collected at the beach smash about and I try to pull them up front, to stay away from the injured men.

The second man lies flat on his back, moaning. He is black, of course, but his arm is white now. The skin has been completely stripped off, known as “degloving,” exposing white underneath; muscle fascia, tendons. His ankle is injured and his shoulder, and when the tall man tries to stand up, he pushes right on the second man’s injured shoulder. It’s one big, writhing, horrific scene. When I look up front, out the windshield, it is also chaos; Randy says simply, “You might want to keep looking back there,” worried that I’ll get sick.

Dr. Maklin has snapped on latex gloves but we all have blood on us. Jorgen and I each grasp one of the tall man’s hands. He looks right at me, through me, pauses and then collapses down again on the metal floor, and then tries to stand up yet again. The ambulance hits a large bump and Jorgen loses his balance, falling on the men. We just pray we get to the hospital soon.

We take the turn up the hill to the hospital, dodge an oncoming truck, and pull up in front of the emergency room. Randy runs in to get a gurney, which seems to take forever to arrive. The tall man is pulled out first and placed on the gurney; off he goes into the hospital. Dr. Maklin stays with the other man. And we wait, and wait. Seconds creep by. The gurney finally returns, the same one, now with the blood of the tall man on it. The second man is put on it and they race off. A huge crowd has gathered. Randy says that crowds will gather faster in Haiti than probably anywhere when something is going on.

Dr. Maklin is the eye of the hurricane, calm, self-possessed, reassuring. Randy may be the hurricane, eager for action and results, a blur in motion. Jorgen and I now follow them into the emergency area, into the examination room. Each man is in the same room, which does not resemble anything like an emergency room. Each has an IV hooked up, and nothing more. There will be no MRIs, no X-rays, no CAT scans. No one removes their filthy, torn clothing, washes the street dirt off them. The only bandage they have is one that Dr. Maklin put on them. The emergency team stands there. One doctor writes a prescription for a drug that will prevent swelling of the brain. But there’s no one to go get it, meaning, there is no family present. Randy grabs the prescription and storms off to get the medicine.

The next 40 minutes consist of marching from pharmacy (just a one window storeroom with a laconic attendant), to medicine depot (the bigger storeroom where all the hospital medicines are kept) to emergency room, and back to the pharmacy. While at the depot, Randy secures some Tramadol, a painkiller. It was placed precariously on the shelf and one vial drops and breaks on the concrete floor, and we all gasp. Such waste!

Back to the emergency room. For a split second only, I focus quietly on a mutt, cooling itself on the concrete floor outside in the shade of the waiting area, as if no drama were unfolding around it. I break away for a bit and speak to Jorgen, who waits outside. Jorgen asks me to send him an Oxford Dictionary, to perfect his English. He wants to be a medical assistant, especially with what he has seen here now. I promise him one and a Lakers shirt. He asks if we can be friends on Facebook.

Back in the ER, the medical team seems disengaged; the two men with head injuries lie on parallel beds in a windowless room with little care administered to them. Randy presents the drugs and tense words are exchanged; a crowd gathers. Randy looks at me and motions to leave. “He’s already gone,” he announces about the tall man. He is still breathing but haltingly. His hands have gone cold, his pupils unresponsive; he is brain dead, this man whose hands I was just holding an hour ago. He still has his dirty, ripped and bloody clothes on. No one even wiped his face. Judgment hangs in the air like a guillotine.

While all this is happening, I lock eyes with a young American woman who, spying my Nikon, immediately asks, “Are you a journalist?” I try to explain just what I am, but she grabs my arm and tugs me forward. “You need to come to the pediatric ward to document this child.” As we rush along, just leaving the two men, she spills out that “Michael” was brought in two weeks ago, abandoned on the street, with most likely cerebral palsy. The staff have not fed him in a few days, and are allowing him to die. “Abby” is a volunteer, there for only two weeks, and found Michael soaked in his own excrement, ignored. She has been feeding him and cleaning him. We arrive at pediatrics, a stuffy, hot room jammed with cribs. In a far crib lies Michael, who looks about 5. Enraged, Abby says rapidly, while a Haitian Nurse Ratched leans over disapprovingly, “We’ve got to get him out of here. There’s no one to speak for him.” And she starts to cry. Randy is great at calming her down, and encouraging her to regain her composure. We promise to contact Maison Benediction, a specialty center, to see if they can take Michael. As I hold Michael’s hand he grabs my arm, pinching the skin; a very strong grip. In another minute he is standing straight up, wobbly, and looks down at me. The nurses get very excited. There’s something in this child; he’s not entirely retarded or hopeless. He can stand on his own; with therapy, who knows how far he will progress?

As we walk back up the hill to the ambulance, Randy is plastered in sweat and wipes his brow. Some splatters on me. In Haiti, it’s all about shared anger, pain, blood and sweat. We are each covered in each other’s experiences.

Dr. Maklin gets into the ambulance too, calm, and even manages to smile at us. It’s been a sad ending to a marvelous day in the hamlet. We drive Dr. Maklin home and thank him. He still has blood on his shirt but poses for a picture I take. We thank him for his dedication and caring, and for helping us with Mitch.

We drive back to St. Francois, and I realize it’s 4 pm and we haven’t fed poor Jorgen. Randy and I can go all day without eating, but Jorgen’s a strapping young man of 28, and must be starving. We pay him for him day of translating, and he heads for home.

I take a cold shower to wash off the sweat, dirt and DEET, and truly felt blessed to have just fresh water and a bar of Ivory soap. If Haiti does anything, it makes you treasure completely simple joys. Randy says grace before a dinner of rice and beans and fried plantains, and never has dinner tasted so good. Bottled water; a glass of wine. I feel like the richest person on earth.

We digest the day’s events while sitting on the second floor veranda. Choir music swells from the church below us. Even to a seasoned pro like him—and six months in Haiti as a medical worker makes him a pro—we are stunned by the lack of response from the emergency team at the public hospital. While we discuss third world medicine, someone comes up on the stairs asking for Randy. Off to the clinic we go. Walking on foot across the yard, we enter the small waiting area of the St. Francois clinic. A woman lies on the bed, eyes rolling around with fever. Her husband stands over her, tenderly watching her with worry. A crowd gathers at the door.

While Randy diagnosis her with a different translator, I take in the surroundings. It’s night now, mosquitoes dive bomb us, and a bare bulb hangs from the ceiling. The room is concrete, walls bare except for handprints, stains, whatever touched it; no privacy, no fan, no amenities, hot as heck. The bed is metal frame with a thin mattress. I’m given the once-over by a woman in the crowd until I smile and say “Bon soir.” She smiles back and returns the greeting. Malaria is diagnosed and doxycyclin ordered. Randy and I return to my glass of wine and his cigar, and we plant ourselves on the second floor veranda again.

Below us is constant noise: people on the street in the dark; shouts; drums beating; singing from the Adventist church next door; generator chugging; dogs barking. There is no peace here.

Half an hour later another call from the stairs. We walk over again in the dark to the clinic, stumbling on the rocks. In the same room we see another woman has arrived. She is wearing a pretty back dress, and she appears pregnant. She is moaning, and her husband is agitated. The translator tries to manage, but emotions are running high and the information is confusing. Finally, we learn that she had to have a fetus removed by C-section 14 months ago when it died in utero. The husband is afraid the same thing might happen. But we also learn the woman had a seizure last night; perhaps this triggered the contractions?

I return to the second floor alone, dazed by the pounding wave after wave in the ocean of suffering here. I can’t believe I’ve only been here two days. Ten minutes later Randy appears and said, “Let’s go.” He means back to the hospital to bring the pregnant women. It’s 11 pm. Maybe he saw the look on my face, and he said, “It’s okay. Go to bed.” I instantly feel guilty, spoiled, weak and selfish for wanting to go to bed, while he will most like spend the night at the hospital. More than anything I dread driving on those terrible roads.

I go to bed. He returns less than an hour later. I promise to make a donation to his work, to alleviate my guilty conscience.

Saturday June 12, 2010
Sitting on the veranda, second floor of the St. Francoise de Sale parish compound, listening to: hammer pounding cement, motorbikes, buzzing of saw, low chanting of Haitians at mass, booming bass from a car rattling by, occasional cheep of a bird, chattering of Haitians as they walk past in the street. Earlier, the birds mostly dominated, but now have been silenced by the array of sounds from humans. The chanting grows louder as mass gets underway, and feels like a heartbeat, slow and steady, coming from the church, protected from the pandemonium outside.

In a few hours I will be on my way home. I feel regret leaving. Haiti is exciting, dangerous, poignant, sad, exhilarating: it’s life on the edge. And it reminds me of a saying: “If you’re not living on the edge, you’re taking up too much room.”

Before he takes me to the airport, Randy wants to show me a different view of Cap-Haitien. We head out to the hills. Through the clogged streets again, the “tap-taps” (small taxis so called because the passengers tap the roof when they want to get off) belch black odious clouds and pass women balancing their market items to sell on their heads. The garbage is even worse today as it’s market day. The view from up in the hills is spectacular. We get out and see old forts, cannons popping out of the ground, half buried and some still standing, surrounded by tents and lean-tos. Shanties are perched precariously on the hill over looking the dazzling bay. Dugouts bob in the water. The bay looks beautiful and sunlight dances off the bleached walls and the tin roofed shanties. And Cap doesn’t look so bad, either. Maybe that’s what’s needed: a little perspective. Standing back and seeing a bigger picture.

You don’t visit Haiti; you survive it. You live through it. You are at once fascinated and uncomprehending. How did this country, smaller than Maryland, the first independent black nation in history, ever wind up in this condition while all the countries around it are developing more?

“Blanc!” a little boy cries out, smiling, as we ride by. A very grateful good bye to Randy, who stays to continue his amazing medical mission, and we will talk next week about our hemophilia national program. After an energy-draining, sweaty 90 minute wait in the airless passenger room, I am airborne on a small flight. I feel as though I am seated in a time machine about to come back to the present. I feel oddly guilty, as we in the US have so much, more than enough, more than we ever need. So much that it actually robs us of the incredible experience of life on the edge. Never have I felt so alive. Never have I felt as sad as to leave fellow humans behind in such conditions. And I cannot wait to return.

The Best Job in the World

UN Peacekeepers

All I could think today was that Randy Moore has the best job in the world. He came to Cap-Haitien, Haiti in January for only a two-week stint and is still here six months later. Haiti grabbed hold of him and never let go. I followed Randy around today in the sweltering heat as he checked on patients in the clinic at St. Francoise de Sales parish, packed up medical supplies and equipment and then charged out to the neighboring towns to deliver his goods to various hospitals and clinics. He’s like Santa Claus, only he is helping to save lives.

Let me back up: I arrived only yesterday in Haiti, and it already feels like a week. After a very pleasant seven and a half hour Caribe Tour bus ride through the Dominican countryside (if you don’t mind that there is no toilet paper on the bus, no soap, no running water and the bathroom door doesn’t shut—but hey, they give you lunch!), we stopped at the Dominican Republic/Haiti border. Disembark, back on the bus, disembark, dodge the pawing hands of the Haitian boys trying to beg dollars or sell you snacks, explain in Spanish to the Haitian customs official why you—the only gringo on the bus—wants to go to Haiti, surrender your passport, back on the bus, wait some more, wave to the UN Peacekeepers, give your uneaten rice and chicken lunch to the begging boys, retrieve your passport, and an hour later, you are in Cap-Haitien! Piece of cake.

The scenery deteriorated dramatically once we passed through the border. I cannot sugarcoat this, readers: Haiti is desperately poor. I visited this country in 2002, hoping to start a hemophilia program. Paid out of pocket, and spent a week with the Christianville Mission gang in Gressier, just outside the capital Port-au-Prince, which is now devastated after the January earthquake. I saw Haiti then but didn’t really see Haiti, and I was there for a week! In two days here I think I have seen much more of Haiti with Randy.

Your sense are bombarded: lush trees, plantain vegetation, deep blue skies; mosquitoes everywhere so that you must always carry DEET and use heavily, even in bed; acrid charcoal permeating the air everywhere; concrete houses and tin roofs; and trash…. More than you have probably seen in one place in a lifetime. And the heat—it has to be 90 degrees or more, with some humidity, but you are always, constantly dripping. After the DR, I am just used to being a soggy mess all week!

But I am thrilled to be back in Haiti. Randy, a nurse and humanitarian, was waiting for me in his white Ambulance Land Rover; we had corresponded by email but had never met. After a friendly greeting, he whisked me away to his new home, the amazing St. Francoise de Sales parish, a lovely little enclave just outside Cap-Haitien that houses a church, operating room, a primary school for 400 school kids, maternity ward, clinic and several huge storerooms filled with donated medical supplies. Randy is the regional distributor of all things medically donated. He’s a popular guy in this town.

He gave me a tour of the grounds, and we met Doussaint, who complained of headaches and seemed debilitated by them. We also saw a mom, about to give birth any time. Randy told me how he’s assisted in births many times, even on the roadside while transporting women to the hospital. Haitians are stoic and strong; they have an extremely high tolerance for pain, as they must live with it so much.

I get to stay at the parish, in a medium size room with the bare essentials: ceiling fan, but no AC, cold showers only; kind of like being in a dorm room. Great food; noisy location. All night long dogs bark, trucks roar by and shake the building. It’s really noisy! But after a day like today, we just collapse in sweat, and enjoy a cold drink on the second floor veranda and get better acquainted.

And it was a great day: I have met some amazing humanitarians, all medical people, who are devoting their free time to helping Haitians who are ill. Infectious disease is rampant, poverty is endemic, and the needs seemingly endless. But what a country! The more I learn the more fascinated I become.

Tonight Randy shared with me how very real voodoo is to Haitians. While the country is categorized as mostly Catholic, like its neighbor the DR, Catholicism is closely wed to the indigenous belief in voodoo. Strange rituals, zombies, curses, sacrificing… it’s all here.

What’s not here is hemophilia care. We know of only two children with hemophilia, about of a country with a population of 8 million. My goal is to start the long-term task of building a hemophilia program, to prepare Haiti to join our world community, and hopefully be included as a Hemophilia Citizen at the 2012 World Federation of Hemophilia Congress. But… one step at a time. We first need, above all, one person on the ground here who will be dedicated to hemophilia. We are blessed to know that Randy has volunteered to be that person. And of all things, he used to work for Coram back in the day, and had quite a few hemophilia patients. He already knows about hemophilia, remembers his “kids” fondly, and wants to help us build up this program.

When I leave Saturday morning, we should have a strategy to move forward. So many of you asked me if you could help those with hemophilia in Haiti following the earthquake. I had to tell you all that there was no help we could give, because no one knew where the patients even were, not even the Haitians! I am happy to say that after this week, it’s all going to change.

Tomorrow, we drive for 90 minutes to meet 10-year-old Mitch, who has hemophilia. Please tune in on Sunday evening, when I will post the results of my visit! Thanks to Randy, we will help Haiti.

See my Gallery at www.kelleycom.com to see my photos of Haiti so far.

Tears for Cheers: Camp “¡Yo Si Puedo!” in the Dominican Republic

Blood, sweat and tears literally flowed at the Dominican “¡Yo Si Puedo!” summer camp in Lomas Linda, Dominican Republic this past week. Blood? Because the 40 children and teens attending all have hemophilia, and when you are exited, attending what may be the brightest spot in your year, running, playing, dancing—oh my, can the Dominicans dance!—and you are never on prophylaxis because there is so little factor available, then you are naturally going to bleed.

No problemo. The good news is that we had plenty of factor for camp, thanks to a generous donation. And you wouldn’t believe how these kids played, knowing they had factor to back them up. With a theme of the “Wild West,” our little cowboys were pretty rowdy!

This is the 11th annual Dominican camp, called “Yes, I Can!” in English. A little over twelve years ago, when I first arrived here, the DR had next to nothing for hemophilia care. No factor, not even donations, a poorly run hemophilia national organization—in name only—and a patient registry of less than 50, if even that. Patients were shut out of participating in their own organization, until one woman and her colleagues decided to shake up the system and return power to the parents. Haydee de Garcia and friends succeeded, and the DR today has a government that buys factor, a patient registry of over 260, regular meetings and events, a strong new organization that is patient-centered, and best of all, a fantastic camp.

Sweat? The humidity hits you like a sledgehammer on this beautiful tropical island nation. My feet swelled within a few hours and I sweated constantly for the next four days. Camp is about 40 minutes outside the capital Santo Domingo, in the rolling hilled countryside. The stunning facility where we hold the camp has stately white houses for dorms, a thatched-roof dining area, a big in ground pool, and no hot water! That’s fine because you look forward to the chilled water to cool you down and wash away the constant perspiration. Three showers a day and back on go the damp clothes, only to be soaked again within an hour in the dripping air.

The acclimated Dominican kids never seem to sweat, though. I watched the in awe as they rolled out of bed at 7 each morning, formed a circle at 7:30 am and did their group calisthenics with “Cuchito” the coach, and then paraded into the outdoor dining area for a hot breakfast. Then there were classes about hemophilia, story times, pool times, a rowdy time with inflatable bouncing castles and jumbo slides and a very special visit yesterday to a rodeo—the first one in the DR! As always, camp ended with a wonderful talent show, including skits about hemophilia, and we were all dancing the merengue when the clock struck midnight.

We had probably the best camp since 1999, when it was founded by Haydee and the Fundacion Apoyo al Hemofilico (FAHEM). Then, it was rustic and without amenities. None of us knew how to run a camp, but still we had a great experience and created fond memories. Fast forward and now we have a world-class camp, and the little boys who attended the first camp in 1999 are now counselors, young men who model everything from how to have manners, to how to be part of a team, how to settle disputes, how to be patient and disciplined, and how to have fun safely.

Tears? That was a surprise for me. I’ve been watching these boys for 11 years, and as a mother, am bursting with pride for the initial campers and the men they have become. Brahian, Javier, Alphonso, Luis, Dámaso, José G., Isaiah, Henry, Carlos and José Luis—what amazing and beautiful young men with hemophilia they all are. When we sat down yesterday morning for a rap session about who they are, what their role is in the future of the organization, leadership, and the importance of them taking on even more leadership in preparation for the day when current leaders are gone, the boys expressed their thoughts and feelings.

It started as a rational discussion about leadership and camp, but then it was as if the past 11 years welled up like a swelling ocean wave, carrying with it all the feelings of little boys who left their mothers for the first time in 1999 to young men who have shouldered silently more pain than most of us know in a lifetime. In giving us, the adults, thanks for what we have done for them—personal sacrifices, long nights of planning, days and weeks of organizing, late night visits to the hospitals–tears began to flow when they realized what their lives may have been like had there been no Haydée, no Mecho, no Dr. Rosa or Dr. Joanne, no FAHEM, no camp. And when one wept spontaneously, several others quietly wept, to release all the common feelings of a decade and in gratitude that their futures have been secured. As one young man said, “These are tears, not from sadness, but from joy.”

Many of these boys and young men come from homes where there are few material possessions, sometimes even no plumbing. They live in houses, make-shift sheds, or cramped and hot urban rented rooms. Camp is so much more than a fun time for them. It’s a celebration of life, a communion of children and young adults who share a common pain, and a foundation for the future. It gives them hope that things will change. Blood, sweat and tears? Bring them on: the blood and sweat you cannot avoid at a hemophilia camp in the tropics. The tears are a delicate leaking of innermost feelings of gratitude– for being alive and for being loved.

This camp is one of the greatest things I have ever been involved with, and nothing makes me happier than to see the boys together, as friends, as mentors, sharing life and memories, and preparing to raise the next generation. I am here till Wednesday, when I leave on a 8 hour bus trip to Haiti–stay tuned!

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