~ Bishop Robert Barron
I recognize him by the large conspicuous lesion protruding from his face. Only a few days ago did I receive his photo in a consultation from one of the Peruvian doctors working out in the rural health post. He was referred for untreated Human Immunodeficiency Virus (HIV) and cutaneous leishmaniasis, a skin disease caused by a parasite transmitted by the sandfly. If left untreated there is a risk of invasion and disfigurement of the nose, mouth, and throat by the parasite. He is promptly admitted for intravenous treatment of leishmaniasis and initiation of treatment for HIV.
He and his family are Kichwa, one of the many indigenous groups that live and maintain their traditional language and customs here in the Napo region of the Peruvian and Ecuadorian Amazon. He is marked with the characteristic cross-shaped tattoo on his forehead, his wife wears a colorful, pleated skirt with a typical floral design, and their child’s neck is adorned with an intricately-beaded necklace, all signs of their Kichwa identity. They walk barefoot, which often misunderstood as a sign of poverty, actually signifies their firm connection with the earth that lies beneath and around them. When we greet one another, it is a gentle meeting of two palms just barely touching rather than an exchange of firmly gripped hands. The latter has a more intimate implication in Kichwa culture.
Suddenly I am pulled away from my curious cultural encounter- my eyes are quickly drawn to his child. The boy’s unsteady gait stands out more than the attention-grabbing lesion on his father’s face. A quick examination of the child’s feet soon reveals the cause of his off-balance stride- his right foot is turned inward, a condition known as club foot. The two-year-old infant lives with a condition for which, in many developed nations, treatment is usually initiated a few weeks after birth. Nevertheless, the obvious deformity does not prevent him from going about life as any other two-year-old would. His step more intentional and cautious, he continues to run away in innocent disobedience, carefully scale any climbable object within his reach, and wander aimlessly in spontaneous curiosity. After discussing the need to travel to the city of Iquitos for an extended period of time for the treatment of their child’s club foot, the parents are anxiously hesitant and fearfully resistant. Disappointment sinks in; through the instinctive lens of a privileged upbringing one cannot see how they could refuse this opportunity for their child. Through a culturally sensitive lens, however, one is able to see the reasons for their uncertainty- they come from a small community two days away by boat and have never been to the city, they speak little Spanish, they have with them no family support, and they will have to leave behind their livelihood for months. We worry this child will continue through life unable to walk normally from an otherwise easily fixable deformity.
Weeks pass by and the father finishes his hospital treatment for leishmaniasis. The lesion on his face recedes, leaving a significant scar in its place. The family decides they will return home and come back in the future to address their child’s deformed foot. These discouraging words accompany a heavy doubt in our minds, and the father’s hopeful recovery is clouded by a resigned uncertainty in his child’s future. He is discharged and the family waits in the patient house until the departure of the next slow boat to their community. They will have to wait a few days.
He and his family are Kichwa, one of the many indigenous groups that live and maintain their traditional language and customs here in the Napo region of the Peruvian and Ecuadorian Amazon. He is marked with the characteristic cross-shaped tattoo on his forehead, his wife wears a colorful, pleated skirt with a typical floral design, and their child’s neck is adorned with an intricately-beaded necklace, all signs of their Kichwa identity. They walk barefoot, which often misunderstood as a sign of poverty, actually signifies their firm connection with the earth that lies beneath and around them. When we greet one another, it is a gentle meeting of two palms just barely touching rather than an exchange of firmly gripped hands. The latter has a more intimate implication in Kichwa culture.
Suddenly I am pulled away from my curious cultural encounter- my eyes are quickly drawn to his child. The boy’s unsteady gait stands out more than the attention-grabbing lesion on his father’s face. A quick examination of the child’s feet soon reveals the cause of his off-balance stride- his right foot is turned inward, a condition known as club foot. The two-year-old infant lives with a condition for which, in many developed nations, treatment is usually initiated a few weeks after birth. Nevertheless, the obvious deformity does not prevent him from going about life as any other two-year-old would. His step more intentional and cautious, he continues to run away in innocent disobedience, carefully scale any climbable object within his reach, and wander aimlessly in spontaneous curiosity. After discussing the need to travel to the city of Iquitos for an extended period of time for the treatment of their child’s club foot, the parents are anxiously hesitant and fearfully resistant. Disappointment sinks in; through the instinctive lens of a privileged upbringing one cannot see how they could refuse this opportunity for their child. Through a culturally sensitive lens, however, one is able to see the reasons for their uncertainty- they come from a small community two days away by boat and have never been to the city, they speak little Spanish, they have with them no family support, and they will have to leave behind their livelihood for months. We worry this child will continue through life unable to walk normally from an otherwise easily fixable deformity.
Weeks pass by and the father finishes his hospital treatment for leishmaniasis. The lesion on his face recedes, leaving a significant scar in its place. The family decides they will return home and come back in the future to address their child’s deformed foot. These discouraging words accompany a heavy doubt in our minds, and the father’s hopeful recovery is clouded by a resigned uncertainty in his child’s future. He is discharged and the family waits in the patient house until the departure of the next slow boat to their community. They will have to wait a few days.
A couple of days later I am surprised to see the father outside the emergency room. He complains of fever, abdominal discomfort, and chest pain. Again, it is his skin that points us to the suspected diagnosis. Rapidly growing purple bumps erupt on his neck, torso, legs and feet. A quick view in his mouth reveals similar spots on his palate. I think to myself, “I never thought I would see this in my medical career.” A week later, the diagnosis is confirmed with a skin biopsy- Kaposi sarcoma, a cancer that typically only occurs in those with a weakened immune system. We worry his life may be cut short by this AIDS (Acquired Immunodeficiency Syndrome)-defining illness. The situation continues to become more complex.
Multiple days go by, days filled with the routine greetings of “alli puncha,” “alli chishi,” and “alli tuta” (“good morning,” “good afternoon,” and “good evening” in Kichwa), long conversations and extensive counseling, and efforts to ease the father’s painful symptoms. Every day brings with it the anxiety of an invisible ticking time bomb and the same recurring questions. “Will he survive?” “Will his child ever receive the care he needs to walk normally?” As the days pass by, however, with each exchange of words, with each gentle “handshake,” and with each concerned gesture, I feel the walls of fear and doubt slowly break down- a relationship of trust and mutual understanding grows in their place. Until finally, one day, the child’s parents approach me saying they would like to go to Iquitos so he and his child can receive the care they need.
A couple months have come and gone, and I head to Iquitos for my quarterly visit to rest and stock up on supplies. I take a visit to the patient house where the family has been staying while they receive more advanced medical care. With joyful smiles they tell me the father’s skin lesions have disappeared with his HIV treatment and the child’s foot has slowly straightened out. I find him with his eighth cast (out of nine) on his leg, his expression communicating to me our shared desire for him to break free from the plaster restraint and run around on his new and improved foot. Instead, we continue to wait in patient anticipation. And seeing the physical restraint of his cast, I call to mind all of the invisible restraints from which this family broke free to receive the care they need: a difficult and stigmatized diagnosis, the clashing of distinct cultures and understandings of life, a corrupt and often unsupportive healthcare system, a stifling fear and anxiety of facing the unknown, and the prospect of leaving their family and trusting in strangers. Their story is an example of humble acceptance, arduous reconciliation, immense courage, and genuine sacrifice. And in the end we are grateful for the “harsh and sweet process that [made this] growth possible.”
“Growth is the only evidence of life.”
Top Left: A colorful toucan joins us by surprise for lunch in the hospital cafeteria one day; Top Middle: The child’s club foot with a noticeable callus now appears straight after several months of serial casting; Top Right: The parasite, leishmania, is spotted under the microscope by our wonderful, experienced lab technicians; Bottom Left: Solidarity- after almost one month without electricity, hundreds of townspeople come together to tug the new generator, resting on a group of logs, uphill to its resting spot where it will supply electricity to the whole town; Bottom Right: A beautifully-crafted bag-shaped nest created by the paucar (yellow-rumped cacique) once hung from the canopy of a tree- the hanging mechanism allows for better protection of their offspring from predators and withstands the forceful winds that often accompany jungle rainstorms.
Multiple days go by, days filled with the routine greetings of “alli puncha,” “alli chishi,” and “alli tuta” (“good morning,” “good afternoon,” and “good evening” in Kichwa), long conversations and extensive counseling, and efforts to ease the father’s painful symptoms. Every day brings with it the anxiety of an invisible ticking time bomb and the same recurring questions. “Will he survive?” “Will his child ever receive the care he needs to walk normally?” As the days pass by, however, with each exchange of words, with each gentle “handshake,” and with each concerned gesture, I feel the walls of fear and doubt slowly break down- a relationship of trust and mutual understanding grows in their place. Until finally, one day, the child’s parents approach me saying they would like to go to Iquitos so he and his child can receive the care they need.
A couple months have come and gone, and I head to Iquitos for my quarterly visit to rest and stock up on supplies. I take a visit to the patient house where the family has been staying while they receive more advanced medical care. With joyful smiles they tell me the father’s skin lesions have disappeared with his HIV treatment and the child’s foot has slowly straightened out. I find him with his eighth cast (out of nine) on his leg, his expression communicating to me our shared desire for him to break free from the plaster restraint and run around on his new and improved foot. Instead, we continue to wait in patient anticipation. And seeing the physical restraint of his cast, I call to mind all of the invisible restraints from which this family broke free to receive the care they need: a difficult and stigmatized diagnosis, the clashing of distinct cultures and understandings of life, a corrupt and often unsupportive healthcare system, a stifling fear and anxiety of facing the unknown, and the prospect of leaving their family and trusting in strangers. Their story is an example of humble acceptance, arduous reconciliation, immense courage, and genuine sacrifice. And in the end we are grateful for the “harsh and sweet process that [made this] growth possible.”
“Growth is the only evidence of life.”
~ St. John Henry Newman
Top Left: A colorful toucan joins us by surprise for lunch in the hospital cafeteria one day; Top Middle: The child’s club foot with a noticeable callus now appears straight after several months of serial casting; Top Right: The parasite, leishmania, is spotted under the microscope by our wonderful, experienced lab technicians; Bottom Left: Solidarity- after almost one month without electricity, hundreds of townspeople come together to tug the new generator, resting on a group of logs, uphill to its resting spot where it will supply electricity to the whole town; Bottom Right: A beautifully-crafted bag-shaped nest created by the paucar (yellow-rumped cacique) once hung from the canopy of a tree- the hanging mechanism allows for better protection of their offspring from predators and withstands the forceful winds that often accompany jungle rainstorms.
They are extremely blessed to have you there.
ReplyDeleteZach, each time I read your blog I realize what a deep understanding you have of the human condition. Your writing and this understanding touch me deeply. Sending you lots of love and blessings.
ReplyDeleteBeautiful story. Thank you Zachary. We love and miss you.
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