No man is an island,
Entire of itself,
Every man is a piece of the continent, A part of the main. —English poet John Donne
I stepped off the plane in Kingston, Jamaica on Thursday evening and the sultry, warm air enveloped me like a thick blanket. This tropical island has great music, savory food, friendly people, world-class resorts, a raging drug problem… and hemophilia. I was here this past weekend to speak at the first-ever conference for the English-speaking countries of the Caribbean. The Jamaica Haemophilia Committee hosted this landmark World Federation of Hemophilia conference.
I’ve been to Jamaica twice before to help the patients organize, and numerous times over the past 20 years to a few other English-speaking countries here, including Barbados, Bahamas, and St. Vincent and the Grenadines. All were represented here, at long last.
The emerging theme of the conference became isolation, and how
to break it. The poetry of John Donne expresses this so beautifully: so many people with hemophilia feel isolated, as if they are on an island, cut off from the world. Indeed, these people really are on islands! Our challenge is to unite patients and families with one another in their own countries, and then link and connect country with other countries, to learn from one another and to support each other. To make a hemophilia continent, and to reduce isolation.
Topics of the two day conference included: clinical management of hemophilia, outreach to community members, genetics, hemophilia in the Caribbean, WFH programs, comprehensive care, the role of nursing, physiotherapy, and patient involvement.
Who attended? Erica Worrell from Barbados, mother of a child with hemophilia, who just started a new society there in April and already held a successful walk to raise awareness; Brian and Ritchie Bardalez of Belize, young men who I have known since they were children, as I visited
Belize twice back in the early 2000s (they are now taking a leadership role);
Issa from Trinidad and Tobago, a patient and fiery orator, all my colleagues
and friends from Jamaica (Denton, Alex, Kirt, Berverly, Kerry-Ann, Milton,
Tamaicka, Sharon, Gricell, and the medical staff of UWI), Laurence Bakhsh, a brave young man from Guyana who we have helped for years with factor donations—first time meeting him!
The challenges are vast: Erica shared how there is no national registry of patients in Barbados, and how difficult it is to get factor. While the country buys some—a miracle in itself—you must get a prescription (wait time long), then go to the pharmacy (wait time even longer). You must pay for all ancillaries, right down to butterfly needles, which often are not even available! And tourniquets? Forget it. (We promised to ship her some ASAP.) Ritchie pointed out that Belize has closer ties with the Caribbean than with Central America, where he is located. There are only 16 known patients in Belize, and the terrain is the opposite of flat Barbados; it is mountainous with poor roads. A plane—“puddle jumper”—is the safest way to travel and distribute factor. 56% of the patients do home therapy, which spares them from expensive travel to clinics. There’s no hematologist—anywhere.
There’s also no hematologist in St. Lucia, reported Dr. Jackie Bird, a 58-year-old dynamo who seems to have single-handedly taken on care for all people with hemophilia on this volcanic island. Poverty is 28%, and there are only 6 known patients—all with factor IX deficiency! Factor is not available and never has been.
That made me sit up. Could we be the first to ship factor IX concentrate to St. Lucia? Jackie’s knees buckled, as she made a prayer sign with her hands, smiled and shouted, “Yes, thank you!” The room exploded in applause. This is the magic of these meetings: putting people together, those with and without, sharing honestly, and finding solutions. Yeah for us!
Laurence, a 33-year-old from Guyana, just founded a hemophilia society in 2015 and is struggling. After all, he has limited mobility, limited funding (he cannot work), and there are only 5 known people with hemophilia, including his brother and cousin. Guyana’s population of 755,000 means there are about 75 people with hemophilia. He has his work cut out for him. But with his natural charm and humility, he quickly became a favorite of all, and with his new network of colleagues, is bound to make improvements soon. “Strive to stay alive” is the organization’s tagline.
The Bahamas was represented by Florence Roker, mother of 21-year-old Chavez, who I met years ago. She has now stepped forward
to grab the reins of the floundering national organization. She broke into tears describing how Chavez has suffered: “You physically feel their pain,” she sobbed. Now, she said, regaining her composure, there are other children who suffer and who need our help. You have to find the silver lining behind the clouds. “This is a passion for me,” she concluded. “I’m motivated to get the organization to where it should be.”
An empowering and passionate speech was given by Issa, chair of the Society for Inherited and Severe Blood Disorders Trinidad and Tobago, an association for those with hemophilia, sickle cell and thalassemia. This is a brilliant strategy, to link up the three blood disorders to gain strength and have a stronger voice. And oh boy, does Issa have a strong voice! Motivating us and making us laugh, he stirred the audience emotionally with obvious leadership skills. T&T has been a WFH national member organization for 25 years, making it the oldest organization for hemophilia in the Caribbean. Issa declared that in the 1980s, West Indies cricket dominated the world. “Dominated!” he shouted. “Dominated! It happened when we united as one! We conquered the world!’ The audience laughed and applauded. Comparing this to diseases and disorders, T&T united as well. But unlike the West Indies cricket team, which had its glory days in the 1980s, “we are still a force to be reckoned with!” Issa declared.
But the most quoted person these two days was Jamaican hemophilia patient Tevon Brown, who stressed how isolated he felt growing up, as if he were the only person with hemophilia. He suffered terribly with pain, which felt like an “electric lead to my heart.” Strong role models and good teachers helped him. And he stressed now that we must unite and bring those who are isolated together, including nations. “We must have stick-to-it-iveness!”
But the greatest joy for me was seeing 22-year-old Kishroy Forde, who I’ve known since he was six, attend. Kishroy lives on Mayreau Island, remote in the Caribbean Sea, part of St. Vincent and the Grenadines, accessible only by boat, with no health care on the island of 300 people. It’s surreal to visit, which I’ve done twice. We provide Kishroy with factor when he needs it, and he knows how to self-infuse. We’ve also helped him attend a tech school, and with the help of his sponsor, purchase a new fishing boat for his father. They live in a rustic community; Mayreau has no towns and you can circumambulate the island in less than an hour. And yet, it is a tropical haven.
This was the first time Kishroy has met others with hemophilia and taken a plane. It was amazing to see him conversing with other guys his age who have hemophilia. He even got up to share his story!
I must thank the World Federation of Hemophilia for organizing this conference, funding it, and inviting me, which allowed me to invite so many of the people I’ve met over the past 20 years. Kudos to Luisa Durante, regional manager of the WFH for Latin America, who is as hard working as she is fun as she is beloved by the people she serves. She and her team (Salome and Felipe) provided a magical two days. The WFH does great work, and we are
proud to support them and volunteer when possible. It takes stick-to-it-iveness to make long term changes in hemophilia care, and this is how it happens. Unity, hard work, passion.
Last week we posted about Rose Bender, a young lady with hemophilia (rare in itself!) who was accepted to Ivy League schools and who has so far lead a rich and rewarding life, supported by family, filled with promise.
Another young person who has graduated is Kishroy Forde, about the same age as Rose but from an entirely different world. He lives on Mayreau Island, in the middle of the Caribbean Sea, accessible only by boat. From Boston or New York? You’d have to take three planes and a chartered boat to get to his home. Kishroy at work
Kishroy could not have grown up in a more different world than Rose. Isolated on this remote island, which only has had electricity for the past 10 years, living in a house without a bathroom, no immediate access to medical care and certainly no factor. Kishroy’s father is a simple fisherman, earning about $40 a month. His little brother with hemophilia, Kishron, died at age 11 from a GI bled. His mother soon after abandoned the family to go to a nearby island and start another family.
Kishroy struggled to stay in school due to his bleeds and lack of factor. He has to take a boat to school daily! Project SHARE shipped him factor from time to time, to keep him alive, and healthy enough to finish school. Thank God for FedEx!
I visited Kishroy on Mayreau Island last February, after not seeing him since he was 6. I was shocked to see, at the docks when I landed, a 140 lb, 6 foot 2 inch beanpole of a young man greet me. Still soft-spoken and gentle, harboring no anger or bitterness at his lot in life, he embraced me and thanked me for the support from our company.
And he surprised me. On an island of only 300 people, most of whom live and die there, he told me he wanted to go to technical school and get an electrical engineering degree. I promise to foot the bill if he could register and study hard.
He did. Without family support, with few options in life, with hemophilia bleeds hobbling him (there are no wheelchairs or crutches even on the island) he did it. I am as proud of Kishroy as I am of Rose. Two young people from different worlds, who both value education and are determined to be independent, contributing members of their very different societies, despite the same bleeding disorder.
Fire is the test of gold, adversity of strong men. Seneca
(Thanks to John Parler for sponsoring Kishroy through Save One Life!)
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After escaping a major snow storm that grounded 50% of flights at Logan, I boarded JetBlue to New York on Thursday, then Bridgetown, Barbados, and then my real destination, St. Vincent and the Grenadines (SVG), a nation composed of five islands. I was last here
in 2001—13 long years ago—to meet the Fordes, a family with hemophilia on the remote island of Mayreau. It’s not easy to get to. After a one night stop over in Kingstown, the capital of SVG, and a meeting with the lovely Dr. Bhattarai Datta, a pediatrician who wants to start a hemophilia organization, I had a short flight, over to Union Island in a private plane, owned and piloted by Martin Jennett, a suntanned, charming and wry Scotsman who has lived here since the 1970s. He showed up in shorts and flip-flops, and said climb in! His Grumman American
Tiger—which he says is “just my car”— is compact, cute, nimble and does the
job, just like its owner. His gorgeous clipper Scaramouche was used in the Pirates of the Caribbean!
We were airborne at once and pierced the clouds. They billowed on my right, the sun heating them. On my left, islands and turquoise waters. Mayreau eventually appeared; we have to technically fly over it to get to Union Island, where there is a runway. From the air, Mayreau was splayed like a green starfish floating on the sea.
At Union Island, I met Glenroy, the captain of a boat which transfers the high school kids on Mayreau to Union every day! He introduced me on the dock to Nancy and husband Lorne, a couple from Nova Scotia, who were also heading to Mayreau. And on the docks is where I met up with Kishroy Forde, who I last saw in 2001, when he was only 6! He shyly walked around me, unsure if it was me, and said hi, and I recognized him immediately. I gave him a hug, big
smile and we chatted. He is 6’2” now, a far cry from the skinny little boy that I put on my knee then.
The ride over was nice, my hair was a disastrous mess, and I mostly listened to Nancy, who shared how she and Lorne had bought a house a few years ago as a winter retreat here, but who have been coming here for 20 years.
At Mayreau, Kishroy’s dad Aldolphus met us at the dock. Dennis, owner of Dennis’s Hideaway, where I would be staying, had sent a driver to pick me up in the strangest truck ever. It looked like it was pieced together bit by bit from scrap metal from anything handy. It was amazing that it could run. There was no dash, just open wires; no
steering column cover. Everything exposed and jerry rigged haphazardly. The door would shut only with a lot of outside assistance. You do whatever you must to keep going here.
Dennis’s Hideaway was written up recently in Outside Magazine as a place to try. It’s where I stayed 13 years ago and it’s pretty much the same. A bit rustic, but from my room, a great view of Mayreau Bay, and Kishroy’s house. It was nice to see Dennis again. He’s a bit grizzled, but still flashes a broad smile. I invited Nancy and Lorne, Kishroy and Aldolphus to dinner at Dennis’s that evening. We gathered at 7 pm first by the round, hardwood bar, where Dennis joined us. He told us stories about various visitors, and how one woman came back to stay a week, and asked if he recognized her. He said no. She said last time she had been there he had proposed marriage to
her! We laughed. I said, “So you probably don’t remember me from 2001?” He paused and asked, “Did I propose to you too?” We all laughed again.
We called it a night at 9 pm; the mosquitoes were biting and their bites sting with impunity. They call these mosquitoes “noseeims,” as in “No see them.” Really.
Saturday February 8, 2014
Kishroy showed up at 8 am or so, and we took it slow that morning. First, to his house, to unload gifts. He has an islander’s walk, shuffling and unhurried, saying hello to everyone. We walked about 20 paces, took a left behind a little bar, and hiked the worn path, matted with leaves, lined with some trash but maintained by goats tied to posts. Some mixed breed dogs pranced out to announce my arrival, followed by pups. Once Kishroy put them at ease, they baptized me with
their tongues, tails wagging so hard their torsos were shaken from side to side.
The simple wood slat home has deteriorated a bit, and most definitely lacks a woman’s touch—Kishroy’s
mother left the family years ago. There is an outhouse and a rain vat. Kishroy shows me his Spartan room, and given
that this may be his home for life, I vow to get him a bedspread and matching curtains next time I come. His cousin Tevin is with him. We unload the gifts: a Bible, pens, books (like Fantastic Voyage, about scientists shrunken to travel through the blood stream), a waterproof expedition watch for him and his father, and wallets. Neither had a wallet.
Kishroy was delighted. And even more with the factor that next was retrieved!
Kishroy is going to get a passport so we can try to get him medical attention for his elbow, which does not bend beyond 90°. I’m not sure what can be done, but we need to
at least find the answer and learn his options. But he needs to go to the States for this.
Next we take a walk. Behind his house are his uncle’s houses. Adolphus, his father, is
one of seven sons: Claude, Samuel, John, then Adolphus, Job, “Nomo” (not his real name, but nicknamed such because his mother declared that after that baby there would be “no mo’.”) and Alvin (apparently her plan failed!). It’s clear that Kishroy, despite the risk of living on an island that just got electricity within the last 7 years, and is accessible only by boat, with no medical care, is surrounded by a tight-knit
and plentiful family. In that way, he is richer than a lot of people I know.
We stroll up to the schoolhouse, where about 70 children all sit in one room. And the Roman Catholic Church, quite pretty and well-maintained, where almost everyone goes
to church. Then we hike around the perimeter of the island, admiring the sun sparkling on the sea, and the various shades of blue. We eventually end up at Nancy and Lorne’s cottage, and they invite us in, despite all the yard work they are in the midst of. A few minutes turns into 90, and we eat lunch and I listen to how Nancy sat with various elder women on the island to capture their stories for a book she authored. She gives me a copy, and one for John, Kishroy’s sponsor. I can’t wait to read this. She has I think for the first time preserved a piece of history of Mayreau.
After lunch we head for the beach, and climb on the dock, where some young boys are fishing. We need gas, and the guys load up the boat with empty containers. While we wait, Kishroy opens up a bit. I ask about his father’s fishing; how often? Where?
“He goes away sometimes for a day, sometimes for t’ree weeks,” he says simply. You miss him.
“Yes…” And adds softly and suddenly, “I miss by brother too.”
I was hoping we could somehow speak about this, but island culture is very different than our North American bare-all culture. Tragedies are not spoken about much. Kishroy’s little brother Kishron died of a GI bleed quite a few years ago. I had noticed
his pictures that I took of him from 2001 set on the one piece of furniture in
the living room.
“I know you do,” I replied. “I miss him too. He was a good boy.” And talk turned to who was Kishroy’s best friend now? “Antonio,” and Kishroy smiles. I would meet him later that day.
The boat was ready, so we gingerly stepped in, balancing dock to rocking dugout; I started doing the splits with one foot on the boat and one on the dock as the boat suddenly drifted away. Thankfully Tevin grabs me and kept me from plunging in!
A very fast speedboat ride, crashing through the mild waves and dousing us with salty water, to get to a neighboring island about 30 minutes away to get the cheapest gas around: about $7 US a gallon! Everything on an island that must be imported is expensive, and almost everything must be imported. We finally pull up; my hair looks ghastly, my sunglasses are salty and coated but what a great ride!
After we load up with an amazing amount of gas (must have been 50 gallons or more), just sitting in the boat at our feet we head out again. I realize we don’t have life jackets, or a radio, or much of anything safety wise, and now have a boatload of gasoline. Yikes.
We tour for the next 90 minutes all around the islands and cays. We see in the distance the small island where Pirates of the Caribbean was filmed. We see pretty green turtles poke their heads out of the water, staring at us with dull eyes. The water is a startling, pure turquoise, like a liquid gem. The sun beats down in us, despite the breeze and wind, and I am soon sizzling red.
We head back and in minutes are back at Mayreau Bay. I head up to Dennis’s to change. We later meet up at Kishroy’s house. En route in the dark, we spy Nancy and Lorne on the street and say our goodbyes and hugs. Maybe it’s the atmosphere, or being on such a remote and sparsely populated place that makes you need to get along,
but you feel closer to people here. Nancy told me only last year for the first time did the island finally get a policeman. A vet comes to the island once a week (there is a problem with too many dogs); a nurse also comes once or twice.
If you get really sick at night, you must take a boat to get to Union, and the facilities there are a bit scary. Martin simply says, “Get to Martinique if you need medical attention.” And I am sure that’s not just a ploy to hire his
Unknown to me, Alphonso has been fishing since the early morning, and returns with succulent lobsters for dinner. He is a man of few words; but I know when I am being thanked. I also note that lobsters are his main source of income; to give away two is a sacrifice. And I note further that Adolphus, for all his lack of education, humility, and humble home, has given me an entire lobster; Kishroy gets the tail of the second, where the sweet meat is of course, leaving Adolphus the head and chest, where there is virtually no meat. I am always struck by the true class some of the poorest people exhibit, and which is so lacking in many of the well-to-do.
We pop open some champagne and toast ourselves. And I split the lobster tail and share with
Adolphus. A grand meal, a way to say thanks for all those who sponsor Kishroy (first the Castaldo family years ago, and now John Parler) and for those who donate factor. We are all keeping him alive and well. In his slight, faint voice, accented with the British lilt of the islands, he says, “T’anks for the factor and the sponsorship.” Nothing more need be said.
We walk back in the darkness, skirting frisky dogs and a random goat, listening to the blaring and pounding of the karaoke bars nearby, stars above, ocean surf ever present, and say good bye at the gate of Dennis’s Hideaway. What a difference 24 hours makes. What a difference shared lives make. What a privilege to be here.
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