September 14, 2009
The humidity that morning was so intense I was awakened by my own sweat before sunrise. My aunt had turned off the air conditioning so all that was left was a fan blasting the hot air into my face. A cold shower brought instant satisfaction but left me with a headache. My aunt made up her mind to come along to see my work, and there was nothing I could do or say to stop her. Since Hoi An Foundation could only afford to spare one driver, my aunt hired a “xe om,” more accurately described as an individually-owned taxi service on motorbikes. I thought I had gotten used to the extreme sun exposure by then, but my body was sending mild signals that I had overestimated my endurance.
The blazing sunlight directly over my head did not do as much harm as the scorching heat on my skin. After half an hour of sitting on the motorbike with the breeze constantly blowing into my face, I arrived at the district where I was going to screen my random sample of residents for hypertension and diabetes. It was a particularly disappointing morning with nearly a 40% non-response rate from the households initially chosen to be in the stratified random sample. The heat had destroyed my usual patience, and I gave in to the cultural custom that I had considered so inefficient until that moment – lunch break.
Lunchtime is not just one hour of the day in Viet Nam — it is a way of life. I had to get used to the idea of empty streets bounded by two rows of closed businesses at noon. Almost everyone in the work force, including street vendors, goes home around noon for lunch followed by a one to three hour-long nap. It was rude to visit people’s houses at noon because everyone was busy having a family meal, and it was hard to find anyone awake to complete the survey immediately after lunchtime. I cannot quite pinpoint whether it is a trace of French imperialism or a natural adaptation to the dangerous noon heat, but I decided to take a long break so my ibuprofen would have time to kick in before I had to work again.
We stopped in a small restaurant known for its Cao Lau, a Hoi An specialty dish, and it was the filthiest place that I could imagine, even by street restaurant standards. The breakfast and lunch crowd had left a floor full of used, grey napkins and cigarette ash on the ground. Between the heatstroke and the upset stomach, I was ready to call it a day and make up for it on the weekend, but I could not get myself to quit. I sat on the motorbike for what felt like an endless journey until we arrived at the second village. Even though I was excited to get off the motorbike before the nausea could hit my body, my excitement quickly turned to astonishment when I saw the first house.
Comparatively narrower that all the other houses on the street, this one was about 150 meters from the main road and stood out as if it were the only house in the middle of the desert. I had on a pair of flip flops and felt the pain of my little toes being buried in burning hot sand with each step. A woman no more than 40 stepped out with a straw hat on her head and two large baskets filled with fresh produce. I was especially alert to make up for the morning’s low response rate and jumped to tell her how lucky she was to get a free screening for hypertension before she could tell me that she was too busy. She agreed and invited me to the house for a drink only to discover she was out of tea. I took off my shoes and quickly screened the room for the closest chair, but there was none. Out of common courtesy I placed all the equipment for screening on the floor so she did not have to apologize for the lack of furniture. As if she understood my gesture, she silently came over and sat across from me. She was a very short woman and could have been easily mistaken as a dwarf if she were in the western world. I placed her tiny arms on my left thigh while she continuously apologized for not having any furniture. Once we were done, I asked her about some of her responses to the survey, particularly about her family and income since she would most likely have to start treating her hypertension and diabetes.
The participant had never been married and lived alone in an empty house with only her produce and one portable stove for company. Even the poorest houses that I have seen had a bike or large pot of rice — she had nothing. She earned about $35,000-$50,000 for a ten hour work day — one hour walking to and from the market and nine hours selling her produce. That is approximately 20 cents an hour and $2-$2.80 a day. I asked her to go to the hospital for a more accurate BSL and blood pressure screening because my informal screening revealed that she had both stage one hypertension and diabetes. I carefully explained the chances of death from a stroke or heart attack. Since her lunch could have affected her BSL, a formal screening, where she would be under the doctor’s directions to fast, was absolutely necessary to provide the precise results.
She stared at me for a moment and said, “It is too bad if I die. I do not have time to get a check-up, and I do not have money to treat those diseases you speak of. As long as I am careful not to spread my diabetes to anyone else and live for as long as can, I will be okay.”
I dug into my pocket for whatever money I had left — absolutely nothing. I reiterated the necessity to get the formal screening and left her house in astonishment. I was more than one mile away from the empty house before I realized that I forgot to tell her that diabetes, although a chronic disease, was definitely not contagious. What could have possibly prompted this myth that diabetes is communicable? I felt guilty for forgetting to explain this detail for her, but I knew that mythbusting had never been a part of my job description; I had neither the credibility nor the experience to correct medical beliefs that have been around longer than I have.
By the end of the day, I had forgotten my role in Viet Nam. Am I going to be a stoic researcher that simply stands back to observe the poverty, injustice, and death in this country? Am I going to be a philanthropic student that eats ramen instead of rice to donate my unused fellowship money to the poverty-stricken? Everything that I have learned in the classroom about participant observation seems so vague. I think the heat has really gotten to me today. A good night’s rest is what I need to apply what Professor Symonds taught me about anthropological research to my medical work.
Friday, June 5
I was awoken by the boiling heat that hit particularly early this morning. Josh’s text arrived late, but I had been preparing since last night for the unexpected. After several delays (missing volunteers and my difficulty in reaching the meeting point), some volunteers, a translator, and a nun occupied a ridiculously large sixteen-seat van while the rest rode their motorbikes. It was an unusual choice in transportation, but I did not want to question the odd doings of tourists because I realized I was going to be one for the next seven weeks. After a short ride in the air-conditioned van, everyone gathered into a small motor boat that took us directly to the leper colony.
The scenery was picturesque but not enough to mask my anxiety. Lively conversations between new acquaintances quickly became noise pollutants that I zoned out as I sat in contemplative silence for the large part of the trip. Our boat started to slow down after entering a bowl-shaped bay, and I knew better than to look for a dock leading to a leper colony. Throwing my shoes onto the sandy beach, I plunged feet-first into the water. I lucked out and barely got wet, but the nun that went after me got half of her robe soaked in salt-water.
The events between the plunge and our arrival at the medical center blur in my mind, but I can recount everything that happened once we there. We all laid our packs in a clean corner and began our individual duties. Josh was settled and began to see patients, so I went over to the nurse’s station to offer my assistance--thinking that I would mostly observe since it was only my second day of work. How wrong I was. Almost immediately the nurses were demanding from the staff at the medical center for clean steel bowls to benches. On their behalf, I invited the head of the medical center into the station to watch our standard procedure so he could implement it during our absence. He declined several times and left the center when I became too busy translating for the nurse and patients. It was obvious to me that the villagers wanted nothing to do with the Hansen’s Disease patients. The social stigma of leprosy that I had heard all my life began to play in my mind like a short, overrated clip on YouTube. Leprosy continues to be labeled a highly contagious and incurable disease, and the villagers on the island used the patients as living proof of “a lifetime of pain and suffering.”
In less than five minutes I went from translator to assistant nurse, throwing out old bandages and emptying dirty bowls with bare hands and a committed heart. It was so easy to lose myself amidst risky drug users, irresponsible health care providers, and negligent government leaders. The government had isolated these patients on a rural island that could only be reached by boat. Although medical workers were there to help, they were insufficient in number, poorly trained in medicine, and most importantly socially negligent to patients of a stigmatized disease. When I thought about all of these factors and the number of patients lined up with supplies of antibiotics they simply didn’t need, I forgot about the probabilities of contracting leprosy and devoted myself to my immediate surroundings. The second patient was comparatively younger than most, and her pickiness revealed a lot about her physical and mental health. The nurse wanted to place her in charge of supplies, particularly unused bandages and extra paracetamol (more commonly known as acetaminophen in the United States and sold under the name brand Tylenol), so that patients with limited accessibility to the clinic could pick them up on a more convenient day. She strongly refused. All the patients were quick to agree with her because no one wanted to be responsible for distributing the bandages and dressing once we were gone.
“What responsibility?!” I silently shouted.
Like an optimistic college kid, I had developed a positive connotation about the island’s state of unity simply because others had labeled it a leper “colony. ” These isolated and, to a larger degree, medically neglected people would benefit from a community where they helped each other out, especially since the infection worsened at different times of the year for different individuals. So ideally the strongest members can help the weakest and vice versa, depending on the course of their own infection.
Then we saw a woman with a prosthetic leg came in expecting pain relievers for her wound but left teaching me an unforgettable lesson. Her left leg had been amputated before the cure for leprosy was widely available in Viet Nam. She wore a regular tube sock on her amputated limb because the prosthetic was scarring her wound. I was a few steps away from the old lady, but I could still smell the light odor that came from the wound. The bandage was old and dirty even though she had just washed it before coming this morning. After we replaced her gauze bandage with better crepe bandages, we instructed her to not wear the prosthetic leg for one week so the wound could heal quicker. She agreed, only to put the leg on as soon as I turned my head –-less than one minute later. How wise she was! She cried that her children were busy working, and she would not wear the leg for a week once she got home.
“Can’t anyone take you home?” the nurse asked. She replied in the negative. The nurse asked again if there was anyone available that could take her home. They replied in the negative. I will never let myself forget how all the villagers, who had nothing better to do than satisfy their curiosity about the foreign volunteers by observing us work non-stop, would rather see this old and disabled woman walk home on her fresh wound than push her wheelchair. There were too many social stigmas attached to helping a person with leprosy.
I had been working tirelessly until that moment. Suddenly my arms became too weak to empty the bowls, and I was too small to erase the age-old stigma attached with leprosy – contagious, filthy, and incurable.
Thursday, June 4
The taxi pulled up to the curb of Tan Son Nhat International Airport in Sai Gon, and I took time to admire the beautiful of the old, but still glamous wing before they close it down. The famous Tan Son Nhut serving passengers in South Viet Nam since the 1930’s will no longer serve domestic flights when construction of the new airport, inconveniently located 25 miles away from Sai Gon, is complete. Before I could fully observe my surroundings, my taxi driver demanded $160,000 ($8. 89USD) Vietnamese Dong. Unfamiliar with the currency as I was, I still realized that he was ripping me off: the meter was at $148,000 ($8. 22USD) when he pulled up to the curb. His tip should have been more than the 67 cents that I spent five minutes arguing about, but I just hate the idea of getting ripped off. I am having serious doubts about living in a culture where bargaining is habitual and setting extravagant prices is a rule of the road. Even the officers in immigration were negotiating for a higher bribe.
Unfortunately, money was the least of my worries. I was to arrive in Da Nang in less than two hours, and the director of the program thought I was scheduled to be there yesterday. I am half way across the world-- entering a city I have never heard of with no address or phone number. I figured that I could always take a taxi to Hoi An and ask around the small town, so I purchased a ticket on the spot and flew into the closest airport.
8:15: I’m at DAD airport, retrieving all of my luggage and anxiously searching for my name among the crowd of bustling family members and hustling cab drivers. There it was: “Cherilyn Tran” on a loose sheet of notebook paper. I was on the move--again. The trip from Da Nang to Hoi An was exciting, as with the rest of the country, but also disappointing. Along the the 20 mile road from Da Nang to Hoi An, there were blueprints for construction of five star hotels and retirement palaces for foreigners. My friend Vy Vy’s words echoed in my head: imperialism was unpredictably changing the face of Viet Nam. I just hoped that the change was mostly good.
Not long after I arrived at the hotel I received a call to meet up with Josh at CHIA (Children’s Hope in Action), an Australian NGO that provides assistance to some of the most underprivileged children in Quang Nam province. Josh did not have the exact address but was certain that it was on the same street as my hotel, so I thought that it would be easier to spot the sign if I walked. It felt so hot that I stopped three different times to purchase a hat, a fan, and bottle of water for a one mile walk. In retrospect, it was far from the hottest day in Hoi An, but the novel heat felt deadly. I finally arrived at CHIA, but no one was working except a young gentleman who wasn’t working at all- he was sleeping at the front desk during business hours. I woke him up and asked for Josh. “Josh does not arrive until 2:30,” he replied. Was it not 2:30 yet? It turned out that my treacherous journey lasted ten minutes. Oh, I am so not going to last in this country. It was an hour before Josh arrived at CHIA, so I had plenty of time to look at Josh’s work.
We saw about twelve patients that afternoon, but the encounter that stood out in my mind was with a young lady and her 5 month old baby. She carried the baby with ease as he was sleeping. As usual, Josh asked about pregnancy or delivery complications. The baby had an irregular skin rash pattern that I could not recognize, so I just sat in silence while Josh enlightened us. The young mother said that early in the pregnancy she was hospitalized with a serious fever that ended before long. Josh slowly approached the baby but his stethoscope’s cold chestpiece disrupted the baby’s peaceful nap. Screams soon filled the room. The baby was small, but he knew that he was not going to be touched by a stranger. He twisted and turned weakly in his mother’s small arms while Josh took any short opportunity to look at his rash pattern. He was not old enough to speak but those eyes were crying to be left alone. He had a difficult time turning his body around but tried with all his strength until he was out of energy. The mother seized the chance to shift the baby’s weight to her other arm as soon as he stopped crying.
I finally understood. What appeared as robust arms that would rather bear her baby’s weight than disturb his sleep were actually a mother’s frail arms that shielded her disabled baby. The baby could not sit up and did not have enough energy to turn away from Josh’s cold chestpiece. Josh diagnosed the baby with congenital rubella syndrome, an illness that the baby acquired when the mother contracted rubella during pregnancy. Josh briefly explained the condition and symptoms to everyone in the room, ending with, “and she’ll have to take care of him for the rest of his life, but you don’t have to tell her that,” to the translator. I did not know enough about the illness to play the blame game, but I remembered all the trouble that I went through to satisfy my school district’s mandatory MMR immunizations in the U. S. I could feel the blood rush to my face. I could not decipher then that the feeling was anger. What the CDC declared in 2004 as a closed chapter in America’s history of endemics had destroyed her baby’s life, if not her own. His illness could have been prevented with a simple immunization that almost every elementary school mandates in the United States. It was injustice.
Well at least CHIA, Josh, and not I were not waiting on the world to change -- we were grabbing the shovels to dig an alternative path.
September 08, 2009
Her name had come up in several previous conversations because they often discussed the most effective form of treatment for her, but I was never attentive enough to place a name to the endless list of symptoms: precious puberty, café au lait patches, osteoporosis, and a permanent displaced fracture. I first met Thuy when her parents brought her to Hoi An Foundation Clinic Day for her a routine follow-up. Carried in by her mother, Thuy was wearing an oversized Victorian tea hat with large purple flowers that covered more than half of her face. Underneath the hat, Thuy’s face looked like a fully bloomed tulip with crystal clear skin and an intent gaze. Unfortunately, the Vietnamese people considered her smile ― with its slightly downturned lips ― the foreshadowing of an ill-fated life. We started out on an awkward note when I,with my reputation for too-literal translations, told the mother that we all thought Thuy was “just gorgeous. ” Compliments are seen as bad luck, and it is common for parents to call their children “ugly darlings”. The mother gave me a strange look like many I had seen when I have these mind slips, so I just sat back and observed.
Myra went directly for the cut on Thuy’s heel while the doctor read over her past medical history. Myra grabbed a large plastic bowl half-filled with water and soaked Thuy’s bandaged heel into the water. Then she proceeded to move Thuy and her family into the next room so the doctor could examine the next patient. That also meant that I would be the translator for Myra and the family. When Myra slowly removed the wet bandage I saw the most horrifying cut ― an entire piece of flesh was gone. Even with no medical school degree under my belt, I knew that she needed to be hospitalized until the flesh healed, or, as the Vietnamese doctors put it, she needed to “wait for the meat to turn red again. ” The family disclosed that they could not afford for Thuy to be an inpatient. Instead, they chose to hire a nurse at half the price to change the bandage daily and check to see when the meat turned red. The hospital was prepared to pull her skin over the cut once it healed. Her parents, who barely had money for basic necessities, were going to pay for a procedure that would probably permanently damage their daughter’s heel, if not her entire foot, when the obvious alternative of skin grafting was available. I guess it was not so obvious in Viet Nam because I found out that only one doctor in Da Nang hospital was familiar with the procedure, and it was only after Josh discussed it with him during a previous visit. In the meantime, Hoi An Foundation did not have the financial means to pay for Thuy’s hospital fee, so Myra could only offer to change her bandage every other day, pay for the family’s round-trip fare from Da Nang to Hoi An, and pick them up from the Hoi An bus station once they arrived. Myra’s offer allowed me to see Thuy frequently and eventually develop a bond that changed my outlook about the medical field
On Saturday morning, I received a text from Myra asking me to come over at three if I was available. Seeing as it was my day off and my plans were flexible, I rode my bike over much earlier than expected. Thuy’s family did not arrive until fifteen past six when I was half asleep on the couch. Instead of coming by bus, they had waited for Thuy’s father to get off from work and borrowed a neighbor’s motorbike to drive 15 miles down to Hoi An. The dressing that we had applied on Thursday had not held, and blood had started to leak through the bandage by Friday evening. I was afraid that changing the dressing every other day was going to help the family save money at the expense of Thuy’s recovery. When Myra was done she brought out a jar of lollipops, and Thuy grabbed two instead of one. She neither smiled nor thanked Myra, which was a very rare response to find in Viet Nam. However, Thuy was only four years old, and I was careful not to comment on her impoliteness as it would insinuate bad parenting on her mother’s part.
“Does Thuy smile more often at home?” I asked.
Her mother replied in the negative. I became more curious.
“Does Thuy ever smile?” I asked further.
“Not a lot, miss,” her mother replied.
When Myra went to grab the reimbursement for Thuy’s hospital bills, I resumed with my questions.
“Has she been quiet since birth or did her behavior changed after she became ill?”
From her mother, I discovered that Thuy was a silent child who barely cried as a baby and rarely talked as a toddler. I asked these questions fully knowing that I might be crossing the boundary by looking into her psychological well-being when we were only responsible for her physical well-being. As a matter of fact, Hoi An Foundation was providing Thuy with some of the best medical care in Quang Nam province. Yet, I let my curiosity and concern for Thuy get the better of me and did not stop until I got the facts I wanted.
By the end of the conversation, I started to glue together the pieces of the puzzle that made up Thuy’s life. Firstly, I could see the signs of sexual development before elementary school in a society with largely late physical maturity. Thuy would also be facing a lifetime at risk of fractures and collapsed vertebrae thanks to the very same doctors who caused her permanent limp when they could not align a displaced fracture. She would also grow up under the hardship of poverty in a land with limited financial mobility. Finally, as an extreme introvert, she was born different in a historically assimilating culture, in a country that largely ignores and misunderstands mental health. With all that being said, I realize that these were only the facts that met my eyes; Thuy’s life was a multi-dimensional experience shaped not only by the things given to her but her responses to them. However, it was in my nature to put the pieces of the puzzle together, even if a lot of pieces were still missing.
Thuy’s mother rang Myra up on Monday to report that the wound was starting to smell. Again, I had the opportunity to translate for Myra, except this time, we were paying her a house visit all the way in the city of Da Nang, approximately 16 miles away. We got off our bikes at the main road in front of her house and walked into a housing unit with just a few houses and a lot of curious eyes mostly staring at Myra. Thuy’s mother greeted us at the door and appeared apologetic that her daughter had fallen asleep waiting for us. I followed Myra’s instruction to grab supplies and caught glimpses of the house while waiting for the water to run. Her house was almost empty. It was hard to believe that four people were living in a house with one mattress, one cabinet, and only basic cooking and living supplies. There were no signs that children lived in the house: no color, no toys, and no mess. I stepped into the bathroom to take a breath but could not control my tears, so I gave myself a few seconds to recuperate. All of a sudden Thuy began shrieking. Her screams were not very loud, but they struck my nerves like lighting. I sat down across from Thuy to persuade her that Myra was only using the scissors to look at her wound and not to hurt her. She began trembling, and I held down Thuy’s foot while her mother stabilized the little girl in her lap. I could not control my emotions and openly displayed a frown before I turned my head away from Thuy. Her mother saw my response, but what she thought of it I believe I will be better off not knowing. Myra eventually stopped her attempt to probe the wound with scissors when Thuy began shaking violently. I saw Thuy’s pain through my mother’s eyes, a pain that even I was starting to feel.
In the past, I have comforted others with some version of “I feel the pain you are going through. ” Yet, when I think about what it really means, only a small portion of people who say it can truly feel the other person’s pain. I remember telling it to a neighbor after her husband died from lung cancer and left behind two young children, but there is no way that the loss I felt was tantamount to the heart-striking pain that she experienced at the time. I also remember telling it to the endless number of customers who told me about the deaths of their family members, but now I realize that I will never know the pain of losing until I have loss. Even then, there are so many who have suffered the loss of a loved one and only say that they can feel another’s pain because it is what is socially acceptable rather than because they were reminiscing on their own pain. However, the pain that I felt with Thuy was real, and it taught me the strength of empathy. I began to see the sacrifices that went into raising a child -- because Thuy has fibrous dysplasia, the mildest accidents can lead to deadly fractures. The empathy that her mother felt could be naturally explained by materal love, but my empathy was from one stranger to another. I realized at that significant moment that I belong in health care. Compassion will give me the strength to fight every patient’s battle as if their life was somehow connected to mine.
Clinic Day at Hoi An Foundation
Today is my first day at Hoi An Foundation clinic. Hoi An Foundation was founded by a pulmonologist from Denver, Colorado who started out providing medical care to some of the poorest children in the Quang Nam province through CHIA (Children’s Hope in Action). He then extended his care to disabled patients in Hoi An who could not afford medical procedures, including children born with AIDS and adult with cardiac and respiratory problems. His latest project focuses on hypertension and diabetes and involves screening patients both in Hoi An and the rural districts of Dien Ban and Duy Xuyen; educating medical providers in rural clinics about appropriate treatment methods, and distributing medicine. When Josh is not in the country he recruits doctors around the globe to volunteer a few weeks of their time to follow-up on old patients and screen new patients. Hoi An Foundation is the first and only organization of its kind throughout Central Viet Nam.
I rode Josh’s bike 3km from my hotel to the clinic and arrived exactly five minutes before eight. I called Myra to open the gates. Myra is an Australian nurse who follows the foundation’s regular patients when Josh is back in the states working and there is not a volunteer doctor in the country at the time. Myra has been in Viet Nam more than two years, and she knows the country, and sometimes its culture, better than I, although I almost speak fluently while Myra is still learning numbers. I walk my bike into the house for less than one minute to find six patients rushing to the door.
Where had they come from and how did they simultaneously appear immediately after I opened the gates?
The doctor had not arrived by eight o’clock, yet the waiting room was already swamped with worried faces. An, the head translator and community health coordinator, made a loud announcement, “We are seeing patients who have fasted for their appointments first. ” The first five patients were diabetics, and more than one also had hypertension. The older patients were not taking their medication as instructed, and one even increased her own dose after the pharmacy accidentally gave her a higher dosage than prescribed. An, the community director and head translator, made the very interesting observation that for some odd reason elder diabetic patients who were not taking their medications properly appeared distorted and forgetful. A lot of patients just stop taking the medication altogether while some mixed up the time or dose. Sometimes An gave instructions on how take the medication several times and asked the patient to repeat them to her, but even then some forgot everything as soon as they left for the door. I was scared to imagine the fate of these impoverished, forgetful patients under the care of local medical providers who expected these patients to not only be responsible for buying the right medication (when local pharmacies too often make mistakes) but also to take their medications properly.
We saw regular patients next. It was not even nine o’clock before patients in the waiting room began showing signs of agitation: pushing, shoving, and begging. The main translator stepped out of the room for a short break so I stepped up to the job. Myra decided to see a family of three first. A stout boy, no older than ten, with unusually swollen cheeks and large black eyes was carried into the room by his older brother. Their mother sat next to me and placed a warm smile over her concerned frown. I listened quietly as the doctor read out his past medical history and Josh’s previous treatments. When Vietnamese doctors told the family that his condition was untreatable, they had turned to Western doctors for their last chance of hope. We suspected that the boy had muscular dystrophy but hoped for something curable. Josh wisely placed the boy on prednisone, a corticosteroid that has been the chosen temporary treatment for many inflammatory and rheumatic disorders. This prescription had the multiple benefits of slowing the rate of muscle deterioration if it were Duchenne muscular dystrophy and helping us discover his real illness if it were something else. Unfortunately, prednisone’s legendary side effects are enough to devastate adults not to mention a ten-year-old. For our particular patient, it was muscle weakness, weight gain from increased hunger, redness of the face, facial swelling, and the occasional blood in bowel movement.
After weeks of unsuccessful treatment we confirmed that the boy had muscular dystrophy and decided to take him off the drug so we could recommend him to an organization that specializes in caring for children with the condition. However, prednisone is a strong steroid that causes the adrenal glands to lose its ability to naturally produce steroids in the long run, so patients had to follow a specific procedure to discontinue the drug. Abruptly stopping the medication could lead to severe adrenal crisis, including but not limited to nausea, vomiting, and shock (Carol & Richard Eustice, about. com), so patients were advised to gradually reduce the dosage under careful supervision. The doctor made these details about prednisone very clear to me so I could emphasize them to the patient. I carefully translated the results of the boy’s side effects and the instructions on how to gradually reduce the medication, paying special attention to word usage and repeating the instructions several times when the patient appeared confused.
I had come on Josh’s recommendation to observe the doctor and had not been mentally prepared to provide life-and-death translating services. What if my imprecise translation caused this boy’s death? I am sure that no one will question the death of an impoverished little boy with an incurable disease in a developing country, so liability was not at the center of my worries. Rather, I was affected by personal responsibility and compassion. I had to explain to the family why we had to test their son on such a powerful drug without directly addressing the real issue ― lack of accessible genetic screening. With watery eyes, the mother placed her dried and wrinkled hands on my thigh and begged me to help her son. With a guilty heart, I told her that we were going to recommend him to an organization that could help. I told her everything that the doctor said, except that the disease was permanent. I had a moment of weakness and needed affirmation that I was doing the right thing before I could tell her. Ironically, the little boy gave me the strength to tell the family the hard truth; I did not want to look directly into those eyes and lie to him.
Not long after I made the statement the brother nodded to confirm his understanding. The mother, on the hand, continued to ask the doctor to help her son. I could no longer focus on the mother and shifted my thoughts to his brother. The older brother was a rather handsome man of 25 who had quit his job to help his mother look after his brother. I glanced over at the older brother’s well-built arms and earth tone skin ― products of carrying his brother to school and hospitals over the years. To satisfy the little boy’s wish, the older brother would carry the ill boy to and from school on the weekdays and watch him around the clock on weekends while the mother worked in the fields. I did not know what to make of a young man sacrificing his education for his sick brother’s future when that future looked so brief and dark, but I do know that this man had taught me the true meaning of sacrifice.
Muscular dystrophy is a sex-linked genetic disease that can be hidden in females but still transmissible to male children. Since they had a daughter in the family, we had to warn the family of the chance that they would have a grandson born with the same condition. I made sure to stress the importance of contacting us or another Western doctor when their daughter got married so she could undergo genetic testing in Hue. I was careful to advise that the daughter get tested before marriage instead of before having children because I was speaking in a country where any suggestion of premarital sex was seen as questioning the family’s honor. I left the family on the good note that perhaps by the time their daughter was old enough for marriage, prenatal genetic screening would be available in the country. You can only imagine how difficult it was for me to explain the concept of screening a fetus for a gene to a farmer in Viet Nam who could not read.