Ranjan Lekhy
Dr. Kamala Tharu pressed her head against the oval window of Qatar Airways flight no. 129; her breath was fogging up the transparent polycarbonate. Below, clouds that looked like tufts of cotton were slowly dispersing. Beyond that vast horizon lay Milan—a city of fashion, science, and new beginnings. She was going there to study for an MD, a Doctor of Medicine, specializing in Genomic Medicine, to learn advanced techniques like Base Editing (Adenine and Cytosine) and CRISPR-Cas9. That Kamala, once a teenager from a family steeped in chronic poverty and superstition, was now poised to become a genomic medicine expert seemed nothing short of a miracle.
The seatbelt sign lit up. She placed her white coat on her lap—not because it was cold, but out of habit. That white coat bore the silent weight of all her past suffering, rebellion, science, and faith. That white coat bore the silent weight of all her past suffering, rebellion, science, and faith. It was a symbol of the victory of the life-giving apron of science over the white shroud of a terrifying ghost (the white shroud of death).
She closed her eyes.
The humming sound of the aircraft’s engine and its jarring turbulence transformed into the sound and jolts of a bullock cart from Hekuli village, transporting her back to when she was half-conscious and being taken to the hospital in Tulsipur. She recalled the heat and dust of the Terai. The memory of fetching firewood from the jungle, and then she remembered the Jāmun (Indian Blackberry) tree—laden with fruit but standing silent and ominous, a symbol of fear. Memories of fainting from high fever there, and the relentless, excruciating pain that no shaman’s mantra could alleviate. The deep rituals of the Guruba, the blood-soaked sacrifices, but Kamala’s disease had a name—Sickle Cell Anemia, the ghost in the gene that was once a protector but had now turned predator, tormenting the entire community.
The plane, cutting through the clouds, was now flying over the Mediterranean Sea of the European continent. Distant twinkling lights became visible. There was no fear in Kamala’s heart—only a deep confidence. And this confidence was given by none other than her beloved teacher, forever memorable, whose pleasant words were like a morning prayer: Gurumā—Guru meaning the giver of knowledge, and Mā meaning maternal strength. Tall, fair, fearless, brimming with love and duty, an incarnation of Saraswati: Miss Meena Rijaure. Kamala bowed her head, placing a light hand on her chest—not any mantra, just the remembrance of infinite virtues. Her silent tribute to her Gurumā spread inside the pressurized cabin of the airplane like the fragrance of agarwood.
Kamala was no longer that little girl who asked questions; she was now a bridge—between superstition and science, between tradition and technology, between the past and the future.
The flight was still heading towards the future. But to know Dr. Kamala’s story, one must go back thirteen years, to an ordinary Tharu village named Hekuli in the Dang valley.
1: The Talented Teenager
Western Nepal’s Dang Valley, the legendary kingdom of the Tharu King Dangisharan. Hekuli village, nestled between green forested hills and a river, enveloped in mist. There lived a fifteen-year-old teenager named Kamala. Her intellect was sharp like a knife, and her consciousness clear like the sun rising in the sky. Her curiosity was like a river—tireless, fast-flowing, and deep, always seeking to know how far its depths go. In that village school with its broken walls and tin roof, Kamala was nothing less than a blessing. She could easily solve algebraic equations, instantly resolve geometry axioms with logic, memorized the properties of all elements in the periodic table like a poem, and asked questions that left teachers pondering.
Her science teacher, Miss Meena Rijaure, was forty years old, full of the zeal for knowledge. She had taught hundreds of students, but Kamala was different. During a lesson on photosynthesis, Kamala asked, “If chlorophyll is green, then why do maple leaves turn red in the autumn in Canada?” Miss Meena Rijaure was momentarily stunned, then laughed and promised to answer the next day. The next morning, Kamala brought colorful diagrams of Anthocyanins, explaining why maple leaves change color in autumn. Her explanation was so clear that even the listening Principal applauded.
“In the future,” Miss Meena Rijaure predicted enthusiastically to her colleagues, “Kamala will surely wear the white lab coat and change the world.”
But Hekuli was a world of chronic poverty, mysterious sounds, and dark shadows. Kamala’s parents, Father Mangala Tharu and Mother Durgi, were kind but bound by superstition. Durgi was illiterate. Mangala had studied up to eighth grade in the same of the village school. Like most Tharus, they believed in forest deities, ancestral spirits, and ghosts, witches, and sorcerers.
On the village border stood a large Jāmun tree, laden with fruit in season, but people were too afraid to pick them. The village’s old women said a Chudail (witch) lived in that tree and forbade their grandchildren from going there after noon.
Kamala saw trees as just trees, considering beliefs in ghosts and spirits as mere superstition. Her heart beat for science: hypothesis, experiment, facts, and logical conclusions. But the village was like the Satyug (Primitive Age), steadfast in its ways, like an old saying in the Tharu language: ‘Hardi na chhode gardi sukathi na chhore gandh‘ (The turmeric doesn’t leave its yellowish powder, the dried fish doesn’t leave its smell)—meaning steadfast in one’s stance, not leaving one’s rhythm.
2: The Sudden Attack
It was the month of Asaar (June-July). There were a few clouds in the blue sky, drifting from northeast to southwest. There was no sign of rains yet despite of Monsoon season. There were about three hours left until sunset; Hekuli village and the entire surroundings were painted golden. That day, being a weekend holiday Saturday, Kamala had gone to the jungle with three friends to fetch firewood. While returning with the load of wood, her broken slippers were making a flapping sound, and her legs were dusty. The heat made her thirsty and hungry. Seeing the Jāmun tree a little off the path, she suddenly said, “Come on, everyone, let’s sit under the Jāmun tree, it’s so hot.”
The warnings of the old women echoed in her mind, but she ignored them. Nearby, some cowherder boys (gaivārs) were grazing cows and buffaloes, laughing and playing. Encouraging her friends, she said, “The gaivārs are right here, what’s there to fear?” The three of them put down their loads under the Jāmun tree to rest. The Jāmun tree provided cool shade, giving relief from the heat. The branches were laden with bunches of Jāmuns fruits, but no one was eating them. Where had all the chiraiya-churguni (birds) gone? The three of them started plucking Jāmuns with a light stick. Within five minutes, their frock lapbag (khaunchhā) were filled with Jāmuns. Driven by hunger and thirst, they started eating them; they were very sweet and juicy. They were very happy that their parents would be very happy to eat the delicious Jāmun. To depart they started to lift the loads of wood.
Suddenly, a sharp surged through Kamala’s chest, as if unseen hands were squeezing her heart from inside. Her breath caught, her eyes turned yellow, and her vision blurred. Her legs and arms became very weak, she couldn’t control herself, and all the Jāmuns spilled from her lap and scattered like beads. Her body fell to the ground with a thud, and darkness enveloped her eyes.
A girl screamed repeatedly, shattering the afternoon peace, “Kamala has fallen!… Kamala has fallen!” The gaivār boys came running. They were all from the same village. “We must tell Kamala’s mother,” said one boy, not more than ten years old, and ran towards the village. Reaching near the village, he started shouting, “Kamala has fallen near the Jāmun tree!”
Kamala’s mother, Durgi, came running breathlessly; in her panic, her sari got caught and torn on a bamboo fence, her face was pale with fear. A small crowd had gathered. Kamala was lying unconscious, her lips were dried, her limbs were swollen, her skin was yellowish like jaundice. Her chest was rising and falling slightly, each breath was like a struggle. Durgi kneeled down, holding her daughter’s hand, and started praying to God silently. Someone brought a lotā (a spouted vessel made of bronze) of water and gave a little to Kamala to drink. The young boys made a stretcher by tying a cloth firmly to a strong bamboo pole on both ends, placed Kamala on it, holding her head and legs, and carried her to the village, changing the weighing shoulders.
They laid a bhottiya (thin mattress made of old saris) on a plank made of Sakhuwa wood in the courtyard. Placing a pillow there, they carefully laid Kamala down. The whole village had gathered. A thin, hunched-over Dādi (grandmother) arrived, walking with a stick, tapping it. A boy placed a small stool nearby and said, “Dādi, please sit on this stool.”
Durgi sat on another stool and started fanning with a bamboo fan. Seeing this, the Dādi said, “Why are you fanning with a bamboo fan? Its air is hot, don’t you know? Get a palm leaf fan.” “Where do we have a palm leaf fan?” Durgi said. “Aunty, we have a palm leaf fan at home,” said a child and ran to get it.
“See, our child’s blood has been sucked dry,” said the Dādi, feeling Kamala’s pulse. “It seems the Chudail has drunk all our granddaughter’s blood.” The old Dādi said, “Hey bride, go get some mustard oil heat it up with crushed garlic, black cumin and asafoetida, and bring it for massage.”
A boy said, “Yes, vampires also run away from the smell of garlic, I’ve seen it in movies.”
Durgi hurriedly went to the kitchen, prepared the warm oil, and started applying it to Kamala’s legs.
“This is definitely the work of a Chudail!” the old Dādi said, still holding Kamala’s pulse.
“Didn’t you know that tree was cursed by Chudail? Why did you let the children go there?” the Dādi continued, “We shouldn’t have provoked that Chudail!” A wave of fear ran through the crowd. Durgi’s heart started pounding. She was stunned. Meanwhile, Mangala had returned home. He was standing like a log and looking at her daughter.
The Dādi said, “Hey Mangala, why are you just staring? Go get red churis (glass bangles), a red lac bangles, a red tikka, red ribbon, a red chunari (veil), red adahul (Hibiscus flowers), and worship that tree. And offer a pair of pigeons, ask for forgiveness from the tree now.”
Within an hour, all the materials were arranged, and ten to fifteen boys were sent to worship the Jāmun tree. Some carried torches, some flashlights, some sticks, some spears. There, at the base of the tree, Mangla smeared the floor with water, offered unbroken rice, red powder (abir), betel leaf, betel nut, tulsi, and Adahul flowers. He lit a candle and offered incense smoke. After offering all the brought materials, he begged help of a boy to sacrifice the pair of pigeons, because Mangala himself was a Vaisnav, committed to non-violence. All the men asked for forgiveness for Kamala by tomorrow evening and returned without looking back.
The Jāmun tree stood bewildered, watching them leave. Its branches seemed to point like a judge’s finger, as if asking, ‘Why?’. The whole atmosphere seemed to be holding its breath. Even the spirits themselves seemed confused.
3: The Shaman’s Chants
Darkness enveloped Hekuli village; fear pervaded every alley, every home. Durgi sat on the porch, hoping her daughter would get better. At one in the night, Kamala regained consciousness. Durgi was overjoyed. She ran to wake Mangala, “Hey Munshā (husband), get up, our daughter has come to her senses. I need to make soup. She must be hungry.”
When Durgi brought the soup, Mangala sat by his daughter. Durgi took her daughter in her lap and slowly started feeding her soup. In forty-five minutes, Kamala could only drink half the soup. Kamala said, “Mummy, I can’t drink anymore, I feel tired, my legs ache.” Durgi laid Kamala down and started massaging her legs.
The next day, the pain in Kamala’s chest had subsided, but her limbs were swollen and painful. She fell again while going to the toilet. Her whole body was bloodless. People said they must call a Dhami (shaman). Kalaru Guruba was a very famous, powerful shaman all over the area. A man was sent to call him.
Kalaru Guruba was very influential and had high demands in society. Finally, he arrived around midnight with two disciples. His face was smeared with ash, he was beating a Dhaphli (drum) made of black goat skin hanging from his neck, dancing with peacock feathers, spreading the smoke of incense everywhere, and chanting mantras in a roaring, incomprehensible language as he entered the courtyard.
The Kamala family house was traditional, supported by pillars of Sakhu hardwood, with walls made of bamboo plastered with cow dung and mud, and a roof of tiles. khāt She was lying on a chawki (wooden bed) and near by a kerosene lantern was illuminating deem light. After hearing the sounds of daphali some neighbors got up and came.
Kalaru Guruba sprinkled turmeric water on Kamala’s body and started chanting fierce goddess mantras. The fierce goddess was both protector and wrathful. “The goddess is angry,” Kalaru the shaman declared and asked Mangala, “What vow did you make to the fierce goddess that you didn’t fulfill completely?” Mangala was taken aback by this question and looked towards his wife. Then Durgi, confused, said, “Yes, when Kamala was small and once she had a fever. We had made a vow to the fierce goddess, to offer a pair of roosters, and we did offer it.”
Kalaru Guruba closed his eyes and started chanting mantras. After two minutes, when he opened them, both his eyes were red. Then he turned to Durgi and said, “You are lying, you vowed to sacrifice not one pair of roosters but a pair of he-goats.” Saying this, he started to hum and recite some mantras with his eyes closed again. After a moment, he opened his eyes and ordered, “Now, as punishment, you must make an idol of the fierce goddess and offer a pair of buffaloes.”
Durgi, with tears streaming down her cheeks, nodded her head in a gesture of surrender. Mangala stood silently holding the doorframe, his fists clenched. There were no male buffaloes at home; there was one pregnant buffalo, a pair of oxen for plowing, and three he-goats for selling to buy some gold ornaments and other doweries for their daughter. Durgi had been making the arrangements for her daughter Kamala’s wedding since now. Every year she sells he-goats, and buy different things as dowries. If her daughter wasn’t going to live, then what was the need for wedding ornaments? So, they decided to sell both the pregnant buffalo and the three he-goats.
Arranging all this took two days. On the third day, Kalaru Guruba and his two disciples together cut, kneaded, and shaped clay and sand in a potter’s shed to prepare the idol of the fierce goddess. On the 9th day, the worship rituals started from early morning. The sound of Dhamphu and Madal drums resonated, peacock feather fans waved, villagers offered rice, fruits, flowers, money, and coins. Seeing the auspicious time, the a pair of buffaloes were sacrificed to the fierce goddess, the alter of worship turned red with blood. His prayers and mantras dissolved in the incense smoke with loud.
But Kamala, in a semi-conscious state, screamed; her tender body writhed in pain. Her joints swelled further, her skin started turning blue from yellow. The mantras grew even louder, drowning out Kamala’s cries. What could poor Durgi do except cry and wait?
“A very powerful Chudail has possessed Kamala,” Kalaru the shaman shouted. “More offerings and sacrifices are needed.”
Durgi’s heart broke; all hope was lost. She stroked her daughter’s burning forehead and started praying to the goddess, pleading for mercy. The rhythm of the Dhamphu, the dance of the peacock feathers, the shaman’s chants now began to sound like a dirge. The villagers, utterly perplexed, trapped between belief and despair, returned to their respective homes.
4: The Science Teacher Meena
Kamala’s two-week absence had cast a pall over the school. Her desk, which was once a hub of curious questions, now seemed barren. Miss Meena Rijaure, with a heavy heart full of suspicion about the unusual event, asked Kamala’s classmates. The children told her about the Jāmun tree, the Chudail, and the shaman’s endless rituals. Meena Rijaure’s heart melted—she knew that superstition is a great disease, it corrupts the minds of both individuals and society and kills them.
She told the Headmaster about Kamala, immediately took her bicycle, and rode on the dusty, bumpy path to reach Kamala’s house. Kamala’s house wasn’t very far from the school, just two kilometers.
Seeing the horrific scene there, her heart sank. In the cowshed, Mangala and his nephew were cleaning blood stained courtyard where the terrifying idol established. Kamala was lying on a bed in the courtyard, her face was colorless, eyes sunken, hands and legs turned blue, joints dried and hard like bamboo. The air smelled of incense, and the shaman’s peacock feathers lay scattered, broken.
Seeing Miss Meena, a smile appeared on Kamala’s face, and she tried to greet her. Durgi was standing there; she greeted her by rubbing her hands together and said despairingly, “The Dhami Guruba says it’s a — Chudail”
Miss Meena checked Kamala’s pulse—irregular and weak. Eyes yellowish, Kamala’s breathing was rapid, her skin was turning blue from yellow, limbs swollen. “Enough!” Miss Meena’s voice cracked like a whip. “This is not the work of ghosts, witches, or spirits. This is a disease. Kamala must be taken to the hospital immediately, right now, you hear me!”
“The Dhami’s rituals are still left—” Mangala protested in a low voice.
“You will kill Kamala,” a volcano erupted in Meena’s eyes. “I have read about Sickle Cell Anemia. If you love your daughter, trust me. I am Kamala’s science teacher.”
Durgi’s mind wavered for a moment, between the incense smoke and Miss Meena’s certainty. But seeing the trust for Teacher Meena in Kamala’s eyes, she immediately decided, “Yes, let’s go to the hospital.”
In a neighbor’s bullock cart, they took Kamala from Hekuli to the nearest Rapti Provincial Hospital, Tulsipur, which was still 16 kilometers away. The journey was difficult, the cart’s wheels hitting bumps and potholes on the road. Durgi held Kamala’s hand, feeding her strength-giving soup, and cried silently. Miss Meena Rijaure assured her, saying, “Have faith, Kamala. Science will save you.” Kamala gave a faint smile.
The hospital’s signboard became clearly visible under the electric light. Miss Meena’s legs raced towards hospital. She found a known doctor in the emergency ward. Greeting him, she explained Kamala’s story and the suspicion of Sickle Cell disease and requested a quick check-up. Dr. Acharya immediately examined Kamala and said, “Her situation is certaintly critical.”
5: The Emergency Ward
Kamala was taken to the emergency ward. Her body was covered with the hospital’s gray sheet. Nurses quickly drew blood from Kamala with a syringe and, handling the test tubes that glowed under fluorescent light carefully, took them to the lab for testing. Another nurse immediately attached an oximeter to her finger. Due to low oxygen levels, after asking the doctor, she immediately put her on a ventilator.
A low hum of conversation and the scuff of footsteps filled the corridors of Rapti Provincial Hospital in Tulsipur. In one of these corridors, Mangala and the other villagers waited in a tense cluster. Inside the ward, Durgi and Miss Meena kept a silent vigil at Kamala’s side, their anxiety a palpable force. Each woman was lost in her own form of prayer: Durgi silently invoking her clan deity, and Miss Meena mentally reviewing everything she knew about Sickle Cell Disease.
The familiar doctor arrived. His face was kind but serious. He carried a file with a clipboard full of many pages. He said, “Miss Meena, you are correct. Kamala has Sickle Cell Anemia. If we had been even a day later, Kamala could have died due to Vaso-Occlusive Crisis, or Acute Chest Syndrome, or Stroke.”
Turning to Durgi in a soft voice, he said, “This is a genetic disorder. Kamala’s blood cells are shaped like sickles or like a crescent moon. When these imperfect blood cells get stuck in blood vessels, it causes pain and oxygen deficiency.”
Durgi’s eyes widened in fear, “The curse of the fierce goddess?”
“No,” Miss Meena said firmly, “This is a hereditary disease. It’s not your fault, only proper medical treatment is needed.”
Dr. Acharya agreed with Miss Meena Rijaure and said, “We will start Hydroxyurea, which reduces sickle crises, Folic Acid tablets which produce healthy blood cells, and for pain management, we will give Morphine for now. (The doctors avoid giving Morphine to children under 16 but here it was necessary). For severe cases, Stem Cell or Bone Marrow transplant can be done, which stops the production of defective blood cells and produces healthy blood cells, but it is risky and expensive technology, and the problem is that this technology is not available in Nepal.”
Durgi felt both happy and sad in the same moment. Miss Meena understood what was in Durgi’s mind; holding her hand, she comforted her, saying, “We will manage the coasts of treatment, medicine, hospital care and meal etc. Don’t worry. Kamala will live a long life, but regular check-ups are needed.”
Dr. Acharya added, “Pain management is very important. Triggers for Sickle Cell crisis like extreme heat or cold, very hard physical labor, dehydration, and stress must be avoided. We will teach you all in detail gradually.”
Although Durgi didn’t fully understand everything both of them said, feeling the words of hope, her mind felt lighter, and a feeling of hope arose in her heart. Kamala’s eyes opened; she had been listening to Miss and the Doctor’s conversation in her semi-conscious state. Her will to live and hope grew stronger.
It was now nine o’clock in the evening. She called a biker brother living in Tulsipur to drop her to home; school teaching couldn’t be neglected. But she said she would come to see Kamala the day after tomorrow morning.
6: The Secret of the Lineage
On the third day, unexpectedly, Mangala’s maternal cousin, Ayodhyasingh Tharu, who was some overseer, came to see his niece Kamala. Everyone was sitting by Kamala’s side, talking in low voices. Then, genetic counselor Dr. Anoma Shrestha arrived with Miss Meena, carrying a laptop. Everyone stood up and greeted both of them. They returned the greetings and sat in front of Durgi, Mangala, and Ayodhya. “We could have this discussion in my cabin, but on Miss Meena’s advice, we want Kamala to know this too. After all, Kamala has to fight this disease,” said Dr. Anoma Shrestha. Everyone remained silent and nodded in agreement.
In these two days, Kamala’s health had improved a lot. She could sit up. Dr. Shrestha turned towards Kamala, opened her laptop, and showing diagrams of human cells and DNA, began to explain: “Our bodies are built from trillions of cells,” she began, “each with a membrane, cytoplasm, and nucleus, like an egg. The cytoplasm holds mitochondria, carrying DNA from your mother—think of it as maternal power. The nucleus has twenty-three pairs of chromosomes: twenty-two autosomal pairs, shared by all, plus one pair—XX for girls, XY for boys—that determines sex.
Durgi said shyly, in a whisper, “Damn it, I don’t understand anything.”
Dr. Shrestha smiled and said, “It’s okay. Kamala, you understand, right?”
Kamala said excitedly, “Yes, Doctor, Miss Meena taught me Mendel’s gene theory in class. X and Y chromosomes are the genes that determine sex.”
“Wow, Kamala, very good, you are very intelligent,” pausing a little, Dr. Shrestha asked, “Do you know about the remaining twenty-two autosomal pairs?”
Kamala smiled and indicated she didn’t know.
“These twenty-two pairs of autosomal DNA come from both father and mother to sons and daughters. Actually, the genes showing heredity are here. Here, human qualities, faults, diseases, and illnesses pass from parents to children generation after generation. Look at this picture!”
“Sickle cell anemia is inherited in an autosomal recessive pattern, meaning you need two copies of the mutated gene to have the disease,” Dr. Anoma explained. “Both your parents carry the sickle cell trait, meaning each has one mutated gene. Since they passed those mutated genes to you, you developed the disease.”
“You Tharus are indigenous people of the Terai, you have been living here for thousands of years. The Terai is a place for malaria. So, to protect from malaria, some genes in your ancestors mutated at least five thousand years ago. Some populations got Thalassemia, and some got Sickle Cell Anemia.”
“Five thousand years ago? Oh my! Are we the descendants of Lord Buddha?” Kamala asked curiously.
Dr. Anoma Shrestha smiled and said, “Hmm, definitely not sure, but it’s possible. The Shakya and Koliya were indigenous tribes of the Terai, and besides Tharus, there weren’t many others before.”
After a pause, Dr. Anoma Shrestha asked Mangala, “Do you practice cross-cousin marriages?”
“No, never. We marry outside seven generations, but we marry within our own Dangaura Tharu community,” Mangala answered hesitantly.
Dr. Shrestha thought for a while and said, “It seems that as the population increased, the tradition of marriage between maternal uncle-niece and paternal aunt-nephew ended. Marriage between close relatives not only increases the risk of Sickle Cell but any genetic disease.”
“What is the solution?” Ayodhyasingh, who had been silent until then, asked.
“There are two solutions. First, one should not marry within one’s own caste. If one must, then marry into another group. Second, if one must marry within one’s own group, then before marriage, the bride and groom should get carrier screening tests done to find out if they are carrying the Sickle Cell trait or not.” Dr. Shrestha said. But she immediately continued, “But the problem is that screening tests are effective for one generation. These diseases can appear in any generation even after seven or eight generations. Therefore, one effective solution is to do inter-caste marriage.”
Hearing this, Durgi, Mangala, and Ayodhya all gasped. Ayodhya said, “Isn’t there such a thing as society and culture? How can we marry someone from another caste?”
Then Miss Meena broke the silence and said, “Yes, society and culture are very important. They make a human complete. But humans themselves create these two which are also ever changing. Just like if a car-part breaks, a new part is installed. Similarly, the parts of culture keep changing. Good parts should be kept, bad parts should be thrown away, not carried. If a person doesn’t change with time, their existence ends like dinosaurs and Neanderthals. The caste system is a social burden based on ego and illusion; it has no scientific basis.”
Dr. Shrestha agreed with Miss Meena and changed the subject. Showing another slide on the laptop, she said, “This is a picture of Kamala’s blood taken under a microscope. Many of Kamala’s blood cells are like incomplete moons or sickles. This causes pain because they cannot flow easily through blood vessels, oxygen doesn’t reach where it’s needed.”
Kamala was looking at the diagram very carefully. Suddenly, her eyes shone with scientific curiosity, “Can’t the faulty part of the gene be repaired?”
“Not possible right now,” Dr. Anoma Shrestha smiled seeing her scientific thinking and said, “But scientists are working in this field. In the year 2012, some scientists developed some technology called CRISPR-Cas9, but it is still in trials. When this technology will get approval and when it will come to Nepal, nothing can be said yet.”
Disappointed, Kamala asked, “Is there no other way?”
“Yes, there is Stem Cell and Bone Marrow transplant, but its process is long and expensive,” Dr. Anoma Shrestha said comfortingly, “But don’t you worry. We can manage the immediate symptoms. Everything will be fine. Let’s talk more later.”
Miss Meena looked at her watch and said, “Oh, two hours have passed. I must go to school.”
Taking out some money from her purse, she gave it to Mangala’s hand and said, “This is fifteen thousand rupees, from the school teachers and students. We will do whatever else we can.”
Stroking Kamala’s cheek, Miss Meena said, “Don’t worry. Everything will be fine. Science develops slowly but surely. I will come again another day.”
Miss Meena and Dr. Anoma both left talking. Ayodhyasingh also took leave after some conversation. Both Mangala and Durgi saw Ayodhya off outside. On the bed, Kamala closed her eyes and started remembering the DNA diagram, dreaming of mastering genetic science and doing research.
7: Healing Through Truth
month and a half was like a harsh school and examination center for her life. The nurses taught her how to manage Sickle Cell Anemia. Hydroxyurea to reduce sickling, Folic Acid to increase blood cell production, and for pain and fever management—Paracetamol and sometimes Ibuprofen with plenty of fluids (avoid giving Morphine to children under 16), and for swollen joint pain, give a hot water bag compress.
A balanced and nutritious food chart based on Tharu traditions was requested from Brazilian clinical nutrition specialist Dr. Raquel Costa de Oliveira, who had studied Tharu nutrition systems. Dr. Raquel prepared the chart for at least four objectives:
- To prevent and correct nutrient deficiency.
- To improve immune system and heart-circulatory system.
- To reduce inflammation and oxidative stress in the body.
- To promote Kamala’s healthy development and physical growth.
Nutritious Daily Meal Plan Based on Tharu Tradition (For Sickle Cell Anemia)
Dr. Raquel noted that Tharu dishes, often rich with oil, salt, and spices, could worsen inflammation in Sickle Cell patients. She taught Durgi to cook with minimal oil, using a touch of pure cow ghee for flavor. Hydration was crucial—Kamala needed plenty of water daily to support her blood flow. To ease stress, Dr. Raquel suggested gentle practices like Vipassana meditation, a mindfulness technique, and simple yoga breathing exercises, paired with soothing music to calm Kamala’s mind.
Miss Meena came to the hospital to see Kamala on her scooter every day after school. Her scooter could be seen outside the ward every day from 5 to 6 PM. She brought books on genetic science, intellectual games, and life stories of scientists like Marie Curie, Rosalind Franklin, Barbara McClintock, Gerty Cori, Janaki Ammal—women who came from marginalized societies.
“You have not just survived, Kamala,” Miss Meena said emotionally, “You are preparing to teach Hekuli the language of science.”
Kamala said with determination, “I want to become a doctor, Gurumā.”
This was the first time Kamala addressed Meena as Gurumā.
Miss Meena smiled and said, “My blessings are always with you, Kamala.”
Kamala was discharged from the hospital after a month and a half. She returned to Hekuli—wearing the hospital bracelet on her wrist, like proof of being alive. Her body was still weak, but her mind returned carrying the light of knowledge, the companion of scientific achievement.
Kamala was now in grade nine. She started preparing for her SLC (School Leaving Certificate). Her study method was not parrot-like memorization but trying to understand the basic concepts of the subject matter, debating, discussing. If any doubt arose, she asked questions to the teachers, counter-questions. Seeing Kamala’s hunger for knowledge, the teachers helped in every way possible. After all, knowledge is like Manjushri’s sword, which cuts through layer after layer of ignorance. But if this sword is not used, it rusts, becomes blunt.
Besides studies, Kamala started discussing with the village head and elders on Saturdays, carrying pamphlets and flyers about Sickle Cell disease. She started raising awareness by telling her own story and experience, what doctors and nurses had taught in the hospital, and what she had studied.
“We can save our children through blood tests,” Kamala insisted, explaining autosomal recessive inheritance with maps and charts.
“Blood tests for the bride and groom should be mandatory before marriage so that potential candidates for Thalassemia and Sickle Cell Anemia cannot marry each other, like what happened to my parents.”
Some people dismissed it as nonsense, saying, “Then no one will get married.”
But the village head listened seriously and agreed, saying, “Kamala’s idea is very intelligent. It’s better to protect the crop before the sugarcane borer destroys it.”
The village head got his grandchildren genetically screened on Kamala’s request. It was found that his grandson also had this disease; it was necessary to be cautious from now on. Improving diet and nutrition was necessary. Then Kamala made her food chart public. She taught what a balanced diet is, how to cook nutritious food, how to cook without oil and less salt, how market junk and processed food is poison.
She made an awakening song in the Tharu language and started singing it with her friends:
Get your blood tested, save your life.
Childhood saved, society saved, no one ever cries.
Thalassemia, Sickle disease, eats the body from within,
Know it beforehand, avoid the pain of regret.
Get tested in childhood, before marriage,
Live wisely and disciplined, keep diseases away.
Reduce oil and salt, improve your cooking,
Leave alcohol, leave sweets, then life will be sweet.
Eat vegetables, keep snails/Situwa (small fish) on your plate,
Love life, not just taste, that’s the thing.
Leave Chyau-Chyau (instant noodles), avoid pizza-burger,
In simple home food, lies the light of health.
Lentils/rice, greens/vegetables, are full of nutrition,
Diseases will leave, one never falls ill.
Cheap, good food, expensive is the state of illness,
Neem, Moringa, fresh grains—these are great.
Look at health, not money, love your life,
Save the Tharu village/homes, when you think right.
Sons/daughters, women/men, make everyone understand,
Get blood tested, save from illnesses.
Spread the message of health, now village to village,
The Tharu land shone, when the lamp of knowledge was lit.
Get tested — Save life!
Eat good — Banish disease!
Tharu society — Healthy society!
8: From the Iron Gate to the Golden Gate
At the age of 17, Kamala scored excellent marks in her SLC (School Leaving Certificate), received a TFA scholarship sponsored by the Tharu diaspora in America—a second step in her education that changed the direction of her life. She earned a gold medal in her I.Sc. (Intermediate of Science). After a year of preparation, she received a government scholarship to study MBBS at the Maharajgunj Medical Campus in Kathmandu.
There, she specialized in Hematology—the study of the disease that had afflicted her since childhood. She gained deep knowledge of the sickling process, medication, transplant procedures, and pain management. But her special interest was in Genetic Medicine. Her lab was not just on campus; she herself was a walking lab, both the investigator and the sample under investigation. At 26 years of age, Dr. Kamala Tharu was established in Kathmandu as an influential public health worker and an expert in Molecular Hematology.
During every vacation, she returned to Hekuli—going straight to Gurumā before going home, touching her feet. Miss Meena would lift her up, hug her to her chest, and kiss her forehead. This time, Miss Meena asked, “How is your condition? Have the technologies for Stem Cell and Bone Marrow transplant finally arrived in Nepal now?”
“Yes, Gurumā, both Stem Cell and Bone Marrow transplant technologies have arrived in Nepal. But this technology has some setbacks, like finding a suitable donor is difficult, it’s very expensive, and there’s a fear of infection.” After a pause, Kamala continued, “I still have inflammation and pain sometimes, but I am managing it only with medicine and nutrition.”
“Can’t a suitable donor database be created? A universal database should be created by some capable organization. It’s the age of the internet now.”
“Yes, Gurumā, not in our country yet, but in our neighboring country India, such facilities have just started that are creating a database of donors: www.dkms-india.org. A suitable donor can be found immediately there. But there is a chance of data theft and misuse.”
“Yes, danger is everywhere; we use mobile phones, there is danger in that too. The government should make appropriate laws.” After a moment’s thought, Miss Meena said, “Kamala, my father was an anthropologist. I read in his books that in the old days, Tharus used to cut the baby’s umbilical cord at birth and make its amulet.”
Hearing this, Kamala’s eyes lit up, and she said happily, “I will ask my mother. This is such a beautiful tradition. Stem cells can be extracted directly from the umbilical cord, which is your own and a 100% match. Thousands of diseases can be cured with stem cells from this umbilical cord.” Thinking for a moment, she said disappointedly, “The problem is that one’s own stem cells might not work because their genes are defective. But yes, stem cells from a healthy sibling can be used. Engineering can be done on those genes. There are so many possibilities.”
Kamala took leave from Gurumā and the other teachers and reached home. Durgi had prepared a feast at home for her daughter out of happiness. People were sitting in the courtyard outside to welcome Kamala. After all, Kamala was the village’s first doctor, the village’s pride. She had come to break the mental stagnation in the village, to promote scientific thinking.
Kamala touched the feet of all the elderly people, asking about their well-being. After some small talk, she told the elderly people about Gurumā Meena’s words. Kamala asked, “Grandpas and grandmas, in the old days, in our language, what did we call the thing attached to the baby at birth, the umbilical cord? Did you used to cut a piece of it and wear it as an amulet?”
“Yes, this custom existed in the old days. Don’t people still wear thread amulets or lockets now?” one grandmother spoke up.
“Yes, we cling to our traditions, calling our superstitions and bad practices our culture, but we forget the good things. This umbilical cord amulet is not a ghost’s mantra; it is a scientific trick. This amulet made from a piece of the umbilical cord has the power to cure hundreds of incurable diseases.”
“But how to make it? No one knows the method anymore,” one elderly man asked.
“Wash the piece of umbilical cord only with pure water (do not use soap, Dettol, alcohol, etc.), keep it clean, dry it in the shade with air so it doesn’t get dirty, then keep it in resin and put it in a silver locket. Maybe Kalaru Guruba knows? We can run this campaign together with him.”
The village agreed.
Then Durgi stood up and said, joining her hands, “My daughter is going to Italy next week for higher medical studies. I want to host a farewell feast for my daughter. Please everyone come this evening.” Invitations had been sent to the village head, Kalaru Guruba, school teachers, and hospital doctors.
An elderly man stood up and said, “Yes, yes, of course, everyone will participate in the farewell feast. Kamala is not just your daughter; she is the daughter of the entire community, the pride of the village. We, the villagers, will bear this expense.” Everyone clapped in agreement.
Salvador, Bahia, Brazil
(This story is purely based on fiction and is not related to anyone. The medicines mentioned in the story should not be taken or administered without a doctor’s advice. However, the food chart can be used.)
