Posts Tagged ‘ Panama ’

Seeing a country through inspiring eyes

I arrived home from Panama late last night, touching down in a sparse and quiet terminal at RDU with shops closed and staff off-duty. Already I miss Panama’s scenery, its warm weather, its delicious food, diverse culture, unique history and collage of breathtaking sights.
But most of all, I miss its people.
That’s highly unusual for the typical trip. Most travelers only interact with service workers when abroad. But this trip was special, one defined not by what places were visited but by who was met along the way.

I’ll never forget the compelling stories of the children, adults and families who didn’t give up on life even when faced with the enormous physical setbacks of OI. They have a disease where the most basic structure of the body is prone to break, living in a country that barely recognizes the problem and provides almost no medical support network. Yet their attitudes remained upbeat when we came to their homes for an interview. In some cases they had scraped together funds for expensive surgeries in the United States, and thus felt privileged just because they could walk.
My entire group of Elon grad students was equally touched by the encounters. We laughed with these Panamanians, cried with them, played games and told jokes. Literally and figuratively, they took our pictures just as we took theirs.
The effect was profound enough that on the plane rides home there was frequent chatter on what we need to do for the next week building the interactive website for OI in Panama. We weren’t just longing to go back to Panama. We were actively looking forward to the coming week of work ahead in Elon, where the technical resources will make it possible to bring to life all the compelling footage we captured on location. It’s hard to think of a project I’ve ever felt more motivated to complete than this website.

It may not stop there. The foundation invited us back for spring break, when a special event will be held to launch the site and build buzz among the non-profit and medical communities in Panama on what can be done to help. There are still other deliverables beyond the website that our group has discussed as ways to make the campaign stronger.
But first comes the process of sifting through the hours of video and thousands of photos to tell just the right set of stories. I’m in charge along with Karen Hartshorn with designing and developing the site itself, including its animated elements, so all the multimedia components work seamlessly.
At the end of the trip the two of us along with translator Mari Vicky Langman presented the digital mock-up of the site to the heads of the foundation. The director teared up with joy, exclaiming how this project will change the lives of the children we met. Given the talent and dedication in our group, I know it can.
It has certainly left a permanent imprint on mine.

Finding a nation off the beaten path

Beyond its namesake canal, Panama isn’t a country that typically generates much interest among the American public. It doesn’t have the glamor tourist destinations and cultural touchstones of western Europe, nor the branded image of adventure associated with Africa and parts of Asia.

But those who overlook this gem of a country are missing out. Among the many great lessons I’ve learned on this service/education trip is that you don’t have to follow the tourist template to of name-brand destinations to have a truly memorable international experience.

The nature of the project raising awareness and support for treating OI has allowed for an immersive tour of the country without sacrificing any work time. At this point we’ve interviewed more than a dozen OI patients, doctors and volunteers on location where they live and work. Those interview sites have stretched from the pacific beaches and resort-like settings of Panama’s western half to the highly modern metropolis of Panama City to the jungles of eastern Panama to the colorful Caribbean coast.

Along the way we’ve passed through historical districts, sandy beaches, impoverished slums, thick forests, majestic mountains and sweeping farmland. We’ve sampled several types of authentic cuisine for breakfast, lunch and dinner. We’ve learned of Panama’s history as a nation and its altogether unique mix of American, French and Spanish cultural influences. We’ve seen rainbows over the jungle, sunrises over the Pacific (yes, it’s geographically possible, check out a map if you don’t believe me) and skyscrapers over the harbor.

It all adds up to a country that can’t be defined by just a few of its parts. Outside of the canal, there are no internationally recognized landmarks, yet drive 30 minutes in any direction and a new discovery invokes surprise. Even the canal never fails to impress despite its well-known status. The engineering marvel changes elevation multiple times, requiring a complex system of locks that make navigation a tight squeeze — so tight, in fact, that ships going through must surrender the wheel to a Panamanian captain for the duration of the trip. That doesn’t stop the ships from coming and spending hundreds of thousands of dollars to pass through the channel. Drive through the city on any given moment and there’s a parade of giant tankers and cargo ships lined up along the ocean awaiting passage.

This trip is by no means a vacation, with 12-hour work days the norm. But I can think of few better ways to authentically experience a country than by interacting with its natives in an open-ended format. The foundation we’re working with has been our guide through areas often too remote or unfamiliar for the average tourist to enjoy. It’s unnerving at times, a bit awkward at others. But after the initial culture shocks comes a deep appreciation for a country I hope to return to again some day, and one that deserves a greater profile

among the international community.

Bones that break. Spirits that don’t

Kenneth is 10 years old. He loves soccer, video games and math, with a goal of one day becoming an accountant. He can break out into song on request, or juggle a ball with his feet.
What Kenneth can’t do is count on his bones to cooperate. The only near certainty is that they will break, as they have 172 times since he was born.
This is what Osteogenesis Imperfecta can do to a body. By dramatically changing the way collagen is produced, bone structure is fragile and fractures can take place during everyday tasks. Without specialized treatment and physical therapy to repair those fractures, the setbacks only get worse.
Kenneth is but one of seven courageous individuals with the disease we’ve interviewed in their homes during these first few days in Panama. Like Kenneth, they all have resilient, upbeat attitudes despite their condition. Yet they all have their own unique medical setbacks that prevent them from getting the help they deserve.

Eventually that help will need to take the form of trained doctors inside the country. By telling the amazing stories of those in Panama with the disease in an engaging multimedia format, my group hopes to do more than just get people to donate money or even volunteer their own time. Ultimately the word will have to get out to the medical community to move American doctors into taking their services to Panama or Panamanian doctors into learning the specifics of OI.

There is no cure for the disease, but with the right support network it can be managed. This trip isn’t all about documenting sad stories, but also highlighting the way some semblance of a normal life can and has been achieved even in the face of extreme medical adversity. We’ve heard about amazing ambitions, dreams and success in not letting brittle bones break the spirit.

Such hope will play a centerpiece in our project’s website, which my classmate Karen Hartshorn and I sketched out yesterday and will start building in the next few days. There is no challenge in having content, only in finding the right way to present and navigate through so much compelling footage. Done right, I hope our audience will be moved not so much by the tragedy of this disease, but by the resolve shown to persevere through its pain.

The farthest I’ve ever traveled to visit a home

Parking can prove rough in Panama.

Forget the congested spaces crammed into the streets of the Panama City’s urban jungle. The 1.5 million-plus municipality has more than its fair share of tight spots for transportation, but they pale in comparison to a short drive into the countryside … where convenient parking is often non-existent.

My graduate school group of eight students (plus an Elon undergraduate serving as our translator) got a full taste of both extremes during our first day in the country. We’ve come for 8 days to get footage and information on those suffering from a rare genetic disease that makes bones as brittle as glass. The goal is to help The Crystal Children Foundation raise awareness of this disease and the gaping lack of treatment options available for those in Panama that live under the threat of a bone fracture at every moment.

We came in knowing the medical plight would prove severe, with patients having heartbreaking stories to tell. What blew us all away on that first day was the sheer effort it takes many just to reach the city to receive the most basic of medical care. The journey can take hours, with multiple modes of transportation, just to traverse 50 or so miles.

Case in point was the first subject we met, a young woman named Zuleika Goday who heads into the city regularly for treatment of her baby Yazmin. We interviewed her at the foundation’s office in the morning, than took what we thought would be a moderate drive to her home on the outskirts of the city. As we drove away from the high rises and modern amenities of the municipality, the road and the degree of development alongside it scaled back dramatically. Within the hour there was only rural countryside in all directions. We kept driving the ever narrowing road waiting for the parking space to arrive.

It came into view eventually. But there was still a river, a 3-mile dirt road and a 2-mile hike separating Zuleika and Yazmin from their house.

It proved perhaps the longest I’ve ever traveled to reach a home, but one filled with exhilaration. After crossing the river in an old motorized canoe, we watched in disbelief as a covered pick-up truck came down the road and the driver motioned for us to pile in. At the jerky moment of take-off, the atmosphere filled with sheer giddiness. In a few hours we would be sweating and sunburned on the return trip and ready for a break. But at this second, there was only childlike laughter and wonder on repeat as we entered a jungle we never expected to see once on this trip, let alone the first day.

The scenery of the hike looked like something out of the TV show Lost: unchecked vegetation in every direction,  a curving landscape of hills, and absolute quiet all around. Eventually we reached the thatched hut Zuleika called home, starting an interview where we learned of her weekly struggle to keep the Yazmin’s bones in place with treatment hours away. The thing is, she’s not the only one in such remote conditions facing such a journey for necessary medical care. There are many others, some of whom we have met these last few days, who live in isolated, poverty-stricken regions where getting help, even on the rare occasions when it’s available, requires a journey. To truly have their major bone fractures fixed, a trip to a U.S. hospital is required in order to find the right medical expertise.

What can we do by sharing in this experience? Hopefully find a way to let the greater Panamanian and American public know of the issue, building momentum and funds for a clinic in the country. It will take just the right mix of multimedia storytelling and web-based graphics calling people to action. I hope we can pull it off, but I know we’ll have all the footage and the experience necessary to make it happen, and I couldn’t ask for a more talented and engaging group of students to work with on the project.

By car we’re seeing a new world. But it’s after we park that the real work, and the real eye-opening experience, comes into focus.