Kids for World Health Presents: “My Trip to Uganda: A Journey to the Human Spirit” – with photographic journal
Africa…As a child, I dreamed of the visual map of a distinctively shaped continent far far away; images of jungle-like landscapes, tall grass, roaming hungry lions, rambunctious chimpanzees, and a doctor named Albert Schweitzer.
I remember asking the questions, as assuredly most of us do, as to why we are born to different parts of the world, each of us with a life to live…often finding ourselves in very different centers of what appears to be inequitable opportunity.
And underlying that cultural stamp, I often asked myself, “What is it that we do share…and how visible are our human spirits within the recognition of what we hold in common as residents of our life-embraced planet?
As our generation grew, the world suddenly became smaller, and the concept of Pangaea continents seemed to become a virtual reality, clearly making possibilities of understanding more feasible and necessary across our globe. As communication became more accessible and technology allowed for direct visitations, the continents seemed to shift once again, giving real opportunities for discovery.
Within my classroom in Larchmont, New York, Kids for World Health emerged from a close cultural look at life in Africa, and the concern for people whose lives were challenged by neglected diseases in developing countries of our world. It emerged through the voices of a collective body of
eight year old children, who found preventable deaths to be intolerable and life to be important for all people with whom we share this planet, no matter of economic or cultural status.
As you heard in the film, KFWH began its mission by educating others about neglected diseases: those for which a cure or treatment exists, but for the world’s poor, are most often unattainable. The initial KFWH target disease, Trypanosomiasis or Sleeping Sickness, was expanded in 2007
to include three other diseases: Buruli Ulcer, Leishmaniasis, and Chagas Disease;diseases of countries found outside our border; diseases for which the treatments often remain unfunded because the western world does not own them.
• See Facts about the Target Diseases in the Education Center/Neglected Diseases
Fortunately for us, our mentors and advisors include an independent team of doctors who are the world’s experts of neglected diseases from the World Health Organization, including Dr. Jean Jannin and Dr. Pere Simarro, our founding mentors; as well as other organizations including Doctors Without Borders. As they travel from one remote area to another, they discover places where Kids for World Health can realize its mission through specific projects or “Actions” in the form of education, diagnostics, or treatment. Options are presented by our advisory team for consideration by the Student Policy Board, members who meet regularly at their home base in Larchmont, NY. A unique quality of our organization is that through thoughtful discussions, decisions are made by students on KFWH policy and placement of funds, based on the integrity of the organization and on the most current information available.
As you could see from our film, Kids for World Health has traveled a long way in the past nine years, from Chatsworth Avenue School to all schools within the Mamaroneck School District; to Harrison, NY and to Washington, DC and the White House; to New Jersey, Illinois and Ohio; to France and to Nigeria; and in September, to Uganda, as an International Scientific Council for Trypanosomiasis Research and Control Conference speaker.
Although, our students could not attend the conference so early in the school year, I accepted the invitation to speak in Kampala, Uganda on their behalf. The conference was attended by 37 countries and by 650 people who lead others across the globe in raising the level of care for the world’s poor. They fight against extreme poverty, lack of financial support and proper treatments, governmental corruption, rebel armies, tribal conflicts, and superstitions that substitute education of commonly acquired diseases.
I was not only privileged to present our mission and work in Kampala, but I was able to gain updated information on the progress of the treatment of Sleeping Sickness and to connect with invaluable human resources for our organization and for our students.
However, the most powerful part of my journey directed my attention to the Human Spirit. For almost four weeks, I resided within a village and hospital compound in Lwala, Uganda at which KFWH recently built a new pediatric clinic. The new clinic services approximately 150,000 villagers from the surrounding areas. It was my aim to make connections with villagers and to help answer the questions that our students have asked concerning life for those in other cultures. I was reminded from a discussion with some friends that to ‘bear witness’ may be the best possible approach to this new experience. To be a receiver and to have conversations with the people of Lwala, was in fact, a way for me to enter their world, and to find understanding. As an equal partner in the exchange of our lives, the white wealthy American image was disarmed as relationships were built, and interactions took a more natural form.
After this experience, I can now speak honestly to you today from the real stories of real people from one forgotten place among many with whom we share our common themes of humanity.
But before I do, first and foremost, what I learned from my trip, was that the work of Kids for World Health does matter to real people…that it does have an effect on lives, and that the commitment that gives us good feelings, is importantly, giving others Hope, a sense of being remembered,and a feeling that some progress exists for them in their world. It visibly contributes to the treatment of individuals who want to live their life, in whatever form that may take.
Lwala Hospital was way out in the bush..like nine hours out! I did not know if I would get there without the experience of pushing my driver’s car.
Over dirty bumpy roads, through muddy waters, past iron-clad roofed shacks…shack after shack and thatched- roofed family villages with wide-eyed babies sitting on roadside staring out to watch the day’s activities..and me transitioning by, I finally met the familiar picture in my mind; that of
Lwala Hospital. My open mind to accept the setting for what it was, was not enough at first, to accommodate the shock of cultural poverty that I was
to experience. I learned, however, that it was possible to adapt, and that relationships, curiosity and visual mirrors of life, kept me grounded enough to reset my ability to function, to find myself, and begin to relate to others.
Lwala is unique, as it has wards for the patients, less than suitable housing for staff, and schools surrounding the periphery. A Catholic church stands tall in the center providing nourishment along with its surrounding gardens. Nicholas Kristof’s NYTimes magazine article on the successful effects of education, healthcare, and micro-finance occurred to me as I studied the landscape. What would be the possibilities of combining all three in one village center to obtain sustainability? Would it be possible at Lwala?
Through conversations with patients, staff, teachers, students, healthcare workers and children, I became known as a “collector of stories.” People would show up at my doorstep to share a wrinkled photo tucked in a book some years ago…and always with a story. I became friends with the Hospital
Administrator, Ada, with whom I shared much woman to woman time.The following is her story which is descriptive of her own hope for education and support of herself and son, Issac.
All names have been changed to preserve privacy.
*“ Academics is something that I cherish. I want to study hard and keep Issac in a good way. My ambition early on was to be a doctor. I began Primary School at 3yrs. old. The Headmaster told my parents not to stop my schooling, because I had potential to be a ‘great lady.’ Through the years,
I had much encouragement from my teachers and was allowed to skip over 2 grades. Unfortunately, in Primary 2, I became sick with TB and had to spend 6 months in the hospital. My parents moved to a different location and I had to attend a school without the sciences! I needed to shift my focus
to History, Economics, and Divinity. My high school performance went well, and the priest at the school offered to send me to University. But the LRA came, and forced us into camps. That changed my scholarship opportunity. Fortunately, my uncle offered me a loan to attend university in Kampala. After graduating with degrees in Administration, Management, and Human
Resources, I applied for the position as Hospital Administrator here in Lwala. I was fortunate to get this position, although I was just 27. It made my original dream of working in the healthcare sector a reality. My next dream is to get a Master’s Degree, and then a Doctorate, go abroad, and to
change my citizenship. I wish to change the quality of my life for myself and for my son.
My other passion is an organization that I founded for women whose husbands have died from AIDS and who have AIDS themselves. We raise chickens and grow oranges to sell at market. I encourage the women to accept being…and to know that they are not necessarily going to die right
away. I believe that for all of us, that it is important to accept life, and to live fully no matter how much time we have, or no matter the circumstances presented before us. “
*Dr. Jon Loute,
the one and only doctor at Lwala Hospital this time, became a
fast and interesting friend. At 27, quiet spoken, humorous, and thoughtful,
Jon sacrifices time and educated effort to bring a quality level of care
to Lwala and its 150,000 potential hospital visitors. Earning only $300 a
month, Jon now faces a concern for his newborn son and wife who will
soon join him at his thatched- roofed hut on the hospital grounds. He may
be forced to consider a city position for a higher pay and conditions that will
give his family a better quality of life.
Jon is one of ten children, 8 of whom are yet living and educated. His
brother died in the Lords Resistance Army, and his sister of malaria.
He grew up in a poor village not far from Lwala. He was well- educated in a
private school that was paid for by one of his brothers. It is common that
each child pay for the next in line, should education be an option. When he
got married, it changed everything, as now, as he states, he is responsible
for more than himself. He is conflicted about leaving, but finds it to be a
probable necessity due to the poor salaries in rural villages. Lwala is lucky to
have a doctor. Most rural villages have trained assistants who make due until
NGO doctors pass through.
Jon performs approximately 350 surgeries a year in a one room cement
cell-like building with two open windows. He works with two assistants and no
running water, no back-up generator, poor-lighting, no x-ray, no ultra-sound
or sonogram machines…and a small container of ether for the patients who
lay on a rusted table with little padding. Jon delivers babies, removes organs, fights infections with drugs that have a weak power to heal. And he comes back each day to what he has…for that is life for him and his people.
While there, one baby was born dead; had they had the help of an ultra-
sound, the baby’s life would have been saved. Isaac, a medical clinician at the
hospital, claims that at times, “Diagnosis can be a matter of coincidence.”
Jon describes their fight against hopelessness as one to support with
humor. He and his medical assistant, Isaac, keep things going with nightly
volleyball matches and much good- humored laughter. Although Jon
is concerned with the future and current governmental and management
struggles and abuse, he proclaims about humor that, “It is better than
hanging!” Yet in his eyes remain the tension of responsibility for the life of
his newborn son, Calin, and the opportunities that he may never have.
I often traveled with Jon to the wards to listen to stories and/or to
help with 4th stage Sleeping Sickness or Malaria patients. The treatments
for Rodensciense( animal tryps.) lasted approximately three or four weeks
with rests in between using Melarsoprol, a highly toxic mixture of antifreeze
and arsenic. Due to lack of funding for research, this combination is the only
available cure for animal Tryps. It kills as many as 18% of the patients on
injection to veins that collapse under its stress. I got to know these familiar
faces and their personal stories with a translator, day to day….and they
welcomed me into their world.
*Anna and Edgar come each Tuesday and Thursday to work within the
Healthcare HIV Clinic and to receive their meds for AIDS. They have eight
children, two of whom have HIV through birth.
The couple walks to work and to the clinic starting at 6:00 AM, arriving at
8:00 AM to receive their protocols, a walk that should take less than an
hour. They are often too tired to walk faster, especially since their intake
is one scant meal a day. Although their meds require 3 good meals a day,
the couple does not eat much, as they first make sure that their children
have enough to eat.Their immune systems are weak from the disease and it
is impossible for them to retain the energy they need to lead active lives.
The couple was forced to move from their home village to avoid the stigma
of their condition. Comfort comes now only from each other, which was
inspiring to see. Their wish is that their children have real happiness, health, food to eat, and an education. More than anything, they wish to live long
enough to raise them.Kids for World Health gave the couple two bicycles in order that their
journey be shortened. They were so grateful that they brought me a
live chicken for lunch, a hand-made mat, and a cabbage! They wish to be
remembered by all of you.
*Maria Agaro is a surviving late- stage Sleeping Sickness patient, being
treated with Melarsoprol. She lives alone in a nearby village, having outlived
her 8 children and husband, who was a tailor. Some of her children died
in the insurgence. She is approximately 75-80 years old, not knowing her
age along with many who have no records. She has only one bed sheet and a
dress to her name and lives on sugarcane, tea and some greens. “Happiness
for me at my age, is not remembered. I only see my Life as having been
difficult…and feel that surely the young have some moments of joy…as only
they can do at their age.” Maria has one tooth, a twinkle in her eye…and
looks as if Life will not capture her Spirit…as long as she can and wills the
energy to survive!
*Sister Anna…an African “sister,” is a Senior Nursing Officer at Lwala
Hospital. She grew up in another village in the same district, living in a
typical hut with a thatched roof. Sister Anna now lives in a small cement
structure on the compound. She tells of the story that all the villages fear
and remember. It takes place on June 24th, 2003.
Joseph Kony, the leader of the Lords Resistance Army, a rebel group originally
fighting for freedoms, but as many rebel armies, turned violent toward their
own people, was said to be in Northern Sudan. No one had heard that he
and his men had reached the outskirts of the area, until a man ran 8 klm. to
warn the villages that men were traveling their way carrying guns. “We were
scared,” said Anna. “3 Days later, at 11:00 PM. they attacked our village.
The parish priest was hurt when he tried to leave, and they beat him until he
opened the safe. He implored them to take anything and leave.” Betty and
the staff ran out into the bush and hid behind the foliage all night long, lying
on their stomachs watching through the branches, barely daring to breathe.
They gaped in horror as the army went to the Primary School to kidnap the
girls from their dorms. The night guard had bravely taken the little girls
away into hiding just before the army arrived. So the rebels angrily went to the Secondary girl’s dorm. The girls were awakened from their sleep and were tied together as one bundle of 108 girls. In the morning, Anna witnessed them being marched out the door and over the grounds to the
neighboring district, where they would begin their 1000 klm. walk to Sudan
to become child soldiers. Those who couldn’t walk were shot. Some of the
girls from Lwala and the surrounding villages found their way back over time.
But there are those who have never been heard from again.
Conversations took yet another form, with focus on human life themes and
questions raised by our students over the years.
What is joy for you? What do you fear? What gives you hope? What is
conflict for you? What do you wish for yourself and/or your family? What
keeps you going…and what motivates or inspires?
In talking with a student nurses group, the issues of multiple wives surfaced
along with the feelings of jealousy and advantages for women experiencing
this custom. “My father has three wives who all live in separate parts of the
house. At first, it was uncomfortable; but later, the women felt that they
had more women with whom to share the work, and to call ‘Sister.’ As for me,
I would not like to participate in this custom. Our generation is getting away
from this, and not entering marriages where men feel this way. About one
third of marriages still practice this tradition. Often women secretly hope
their men will not become wealthy and own many cattle, because what follows
is the status and means to have more than one wife.”
*Eve, an ambitious student nurse with expressive, hopeful eyes stated:
“Joy and happiness for me is to have good women friends. We understand
each other”. Eve stated that what she wishes for is “to raise the level” of
her life, get a good education and job, and live meaningfully. Currently, the
average life span of a Ugandan woman is approximately 39-41 years old. Life
conditions, health standards, diseases, hard work, and general poverty take
its toll. It seems important to not only change the conditions of life, but
also the motivational attitude to do what one can to improve, even under a
seemingly hopeless situation. I would think lack of motivation in some way
may demonstrate a fear of being caught in a situation of unfulfillment in a country which does not support the individual in any real way. Fears of being used, being discounted as unimportant, of territorial thievery, of violence in the name of power or greed run deep, particularly among those who remember horrific attacks on their villages and people and those who have
seen and understood the real motives of a government that doesn’t care if
its people die.
In visiting and teaching a senior class of girls, I asked about their wishes.
Some of the girls wished to be a doctor, nurse, teacher, accountant. The
majority got down to basics. Obuka, a 15 year girl spoke quietly from her
bench in the classroom. “What I would wish for is a piece of meat, some
shoes, and even a happy dress!” Dreams have their limitations by the
relevance of the here and now.
A Day in the Life of a healthcare worker, an adult or child villager, and
patients were noted in my journey through the village. An example of a day in
the life of a ten year old girl is the following:
4:30-5:00 AM- wake up bell
5:00- morning prayers
5:30– fetch the water
dig for food
6:00– bathe from the basin and dress for the day.
6:15– prepare breakfast for the family.
7:00– clean up and straighten the house or begin walking to school..(1/2 to 6)
7:30– school day begins
1:00-2:00 PM lunchtime…walk home or stay at school ;( no food provided in
primary schools; therefore, some children don’t eat for a 12 hour span of time.
2:00– walk home
3:00– rest and clean up
3:30– meet with friends
4:00– fetch the water
prepare the dinner for the family
do any laundry for the next day
clean up the house
6:30- clean up from dinner
8:00-9:00– Bedtime…no electricity; therefore, work by the firelight only.
Living in a village such as Lwala is, to me, the only way to experience even
a partial feel for the culture and life of its people. To experience hunger,
squat in a hole, bathe under an ankle- high spicket when the water dares
to run, gives a sharp gut reaction of culture shock, followed by ways in
which one learns to adapt and survive; and it gave opportunity to experience
more direct empathy. But what are our common themes that identify us
as humans? Joys, fears, compassion, a mother’s pride, greed, authoritarian
power, insecurities, feelings of inadequacy, mistrust, mismanagement of
governmental funds, territorial power, ego ….and more, play out in our
modern cultures right alongside cultures often described by the western
world as developing, traditional, or even primitive. We are more than not,
quite the same at our core.
And how does one even begin to dream, to imagine, to have wishes when
thinking about water or food or the hopelessness of a situation which
does not encourage you to move forward; rather, does everything possible
to inhibit growth? In reference to my childhood question, and to that of
Jon, my doctor friend, “How is it that some people in our world seem to
have the opportunities to live their lives more fully without the consuming
process of acquiring the basic needs of day to day survival?” And what is
our responsibility as partners in humanity? My thoughts are that in getting
to know the people we serve and in creating relationships, we begin to
understand the real human stories, our common threads, as well as how we
can begin to help one another in a respectful way. The village of Lwala is only
one example of a decimated area whose needs are great from the struggle
of poverty, abusive conflict, lack of education, and disease.
What can we do? What can we imagine for all the world’s people?
Kids for World Health imagines creating opportunities for understanding
through communication sites where KFWH students and villagers share
personal stories and questions.
We imagine ways in which a global health curriculum and direct cultural experiences can be shared among students through photo essay and publications.
We imagine a world where new generations of young people understand equality from a different perspective other than economic and technological advancement.
It imagines human equality being expressed through exchange of perceptions, thoughts,
values, and feelings, and through expression of imagination..opening doors
for a future that speaks of service with a new vocabulary and new ways of
understanding cultural difference and levels of common ground.
it imagines that all the world’s people have the chance to live a life, no
matter how that life unfolds; for, as witnessed in Lwala,
“Life is important for all people, rich or poor”.
“Travels in Uganda” is a photographic journal with intent to capture expressions that mirror student questions and themes on human commonalities. It was also used with a written memoir called “My Trip to Uganda: A Journey to the Human Spirit” describing my experience in Lwala Village where KFWH opened a new KFWH Pediatric Clinic. We hope that you will enjoy the presentation and use it as a basis for dialogue about what unites us as humans within our common core…kk