Dukhni Bai's Story - Diabetes and the Vortex of Poverty

A tale of illness and disability that have brought a good family to the brink of despair. 

Dukhni Bai, 36, ravaged by diabetes for eight months

Duhkni Bai at the JSS hospital, skin and bones

Dukhni Bai, 36, first presented at the JSS hospital in Ganiyari in January 2010. She spoke of falling ill in November 2009, at the time of the rice harvest. At first, she noted weakness in her legs and a growing, ultimately disabling, weariness. Both were accompanied by constant thirst and frequent urination. A gnawing backache tormented her throughout the day and night. She progressively lost weight despite a good appetite.

Landless laborers sewing paddy, rural Chhattisgarh

Until then, she worked in the fields in the vicinity of her village, Nevra, in the Bilaspur District of Chhattisgarh. Every year, beginning in July with the onset of the monsoon season, like most other day laborers in central India, she sowed rice seedlings in the fields around her village, weeded the growing plants and then, in October and November, harvested the mature paddy (rice stalks). Like others around her, these months, Dukhni Bai could be seen all day bent over at the waist, much of the time exposed to the brutality of the sun and high humidity.[1] These relentless daily assignations earned her 40 rupees daily – less than a single U.S dollar.

Dukhni Bai's husband, Jai Hari

Her distinguished-looking husband, Jai Hari, earns a few rupees more than his wife at hard labor and fieldwork, gaining often 50 rupees daily. Such marginal employment is available most months, September being the usual exception. In July and August, it’s sowing seeds and plowing. Following harvesting in October and November, in December and January, it’s threshing season, turning dhan[2] into edible rice. The rest of the year, February through May, when there is no fieldwork, Jai Hari looks for work “digging things up”. When available, he hires on to plant vegetables in other people’s fields.

If showers come in June, Jai Hari can plow the fields of landowners. He owns a massive wooden plow. Owning no animals, like most other farm laborers in these villages, he shoulders this massive beast and takes it a kilometer to the fields of his employer. 

Another farmer with a plow like Jai Hari's on the road, Chhattisgarh

That’s a good question

Since Dukhni Bai became profoundly weak from diabetes, their income has been cut in half. I asked him the inevitable: How have you managed financially since November? At first, no answer was forthcoming. Just silence while Jai Hari thought how to put it. Finally, after a forever pause, he replied in a measured, almost inaudible, voice: That’s a good question.

Half of nothing is nothing

The cost of diabetes treatment alone for an insulin-dependent patient averages 1,000 rupees a month ($20), annualized, a fortune for a poor village family.[3] Medical treatment is the second largest source of debt burden in rural India, the first being indebtedness to merchants for agricultural supplies and food. And who can afford a death in the family – four to five thousand rupees for a proper village funeral? The answer: more indebtedness.

An observation by Dr. Ravi da Silva, a JSS physician: As the price of dal[4] has zoomed, those that ate it once or twice a week can’t even do that any more. 

No one helps

Jai Hari’s family includes Dukhni Bai, their three children, his 80 year old mother and himself. To cope with his catastrophic loss of income, he has been taking advances from the farmer he works for. When he and Dukhni Bai both had earnings, they’d just get by. As a Below the Poverty Line (BPL) family,[5] they are eligible for a government subsidized 35 kgs. of rice monthly. This lasts a scant two weeks of the month. Then, it’s skimping and going hungry. Vegetables are unaffordable, except in absurdly small quantities. We watched them eating scraps only one day. Prices for rice and dal in the market have almost doubled in the past two years.[6] The family of six used to have two kilograms of rice a day; now it’s one. Dal is unaffordable. Think of it, after a full day’s hard labor for him and the exhaustion of diabetes for her, only small portions of rice and bits of vegetables.

Jai Hari is by disposition an impressively uncomplaining and reserved man. He does not raise his voice. Does family help out?, I asked.  Without a trace of bitterness, he replied: No one helps. My three brothers are concerned with themselves, their families.

The exterior of Dukhni Bai's home, one room of several (on right)

Their home is one small, mud-walled room in an extended family compound of five rooms. The government provides an electrical connection, one bulb and a single light socket, the usual subsidized set-up for rural families designated below the poverty line. The family has one additional bulb, freely, almost proudly, admitted as stolen, but to this end, the wiring has to be shifted from one room to the other, allowing only one light to be on at a time. Like most homes in the villages of Central Chhattisgarh, theirs has no latrine. Sometimes it’s to the forest, a kilometer away; at other times, they find a place next to their mud house. There is, however, an abundant supply of water available at all hours from a public school just across from their house.[7]

Jai Hari with two of his children. Daughter is crippled by polio.

Before Dukhni Bai fell ill, over five years, she was able to save several hundred rupees by carrying heavy loads of grain on her head, a kilometer distance. Finally, the savings were sufficient for her husband to buy a second-hand bicycle. But like many bicycles in India, it is idle now for want of repairs.

The moral of the story: an incapacitating chronic illness, has tipped this family into  desperate poverty.  Once Dukhni Bai’s insulin-dependent diabetes is well controlled, perhaps their extreme suffering will be mitigated and that then they may return to a life of hard labor allowing simple year-around, below-the-poverty-line penury. Is this too much to hope for?

---

[1] With the harvest, the rice shoots, cut down first with scythes, are then dried, bundled and carried, 30-50 kgs in a load, often a few kilometers to an area where the grain is threshed

[2] Dahn or paddy are the names of the unprocessed rice plants as harvested.

[3] Dr. Yogesh Jain, a founding member of the JSS staff, says that 1,000 rupees is a conservative estimate of the combined monthly cost of laboratory tests, physician visits, and insulin kits.

[4] Dal, a mixture of a variety of lentils and spices, is a staple of the Indian diet.

[5] BPL, a complicated story. Vast numbers of rural poor do not qualify. For those that do, government subsidies are absurdly inadequate. Of promise, is the National Rural Employment Guarantee Act of 100 days of labor, at the minimum wage, for a family in a year. As yet, 100 days remains an unattained right for most. Jai Hari hasn’t even applied for the benefit as the enrollment in his village has been only when he has been away working in the fields.

[6] Three years ago, 2007, dal cost 45-48 rupees/kilo in the market and now 80 rupees; rice in two years has gone from 19 rupees/kilo to 35. Source: Dr. Rachna Jain, a JSS physician.

[7] A 2007 JSS study, however, on the water from randomly selected bore wells in villages of the region showed that 40% contain significant titers of pathogenic e-coli, due to fecal-oral contamination. This water, as well as lack of hand-washing facilities for the handling of food, are major sources of gastroenteritis causing disability and life-threatening dehydration in infants, small children and the elderly. In 2010, JSS has in development additional resources and initiatives to address these problems.

Sonarin Bai's Story - Death in Delhi

Sonarin Bai, Chronic Myelogenous Leukemia

Dead in Delhi: At Whose Door?

Sonarin Bai (on the left), Eeswari, 10, her daughter, and Leela Bai, her aunt
July 12, 2010, JSS hospital grounds, Ganiyari, Central Chhattisgarh

Terrible forebodings

I first met Sonarin Bai, 30, mother of three, on July 12, 2010. With worsening health, she had traveled for two days from her village in the neighboring state of Madhya Pradesh to Jan Swasthya Sahyog (JSS) located on the outskirts of Ganiyari Village[1]. Neighbors and relatives advised that it would be worth the arduous journey to see a good doctor. She and her husband, landless laborers, borrowed 3,000 rupees for the trip to Ganiyari.

She arrived at the JSS hospital accompanied by her mother, Sumantri Bai, her aunt, Leela Bai, and her middle child, Eeswari Bai, a cherubic-looking 10 year old with outsized dark, inquiring eyes. Though the child remained silent throughout, Sonarin explained that Eeswari had been terrified by her illness. She was crying and would not leave her mother’s side. So Sonarin had to bring her along. The child had terrible forebodings.

A steep decline

Sonarin spoke of ten or more episodes of fever and cough over three years, each lasting a week or more. But since January 2010, she had noted pain and swelling on the left side of her abdomen. Both got progressively worse. By the time she sought help, she had lost a great deal of weight, suffered back pain and felt feverish many days. Progressively weak and exhausted, she had to give up working in the fields. With any exertion, she could not catch her breath.

A diagnosis and hope

The doctors at JSS quickly determined her problem – a rare form of bone marrow cancer called Chronic Myelogenous Leukemia (CML)[2]. They noted huge enlargement of her spleen that accounted for the swelling in her abdomen.[3]. A simple blood test revealed the countless millions of cancerous white blood cells that are characteristic of this disease.

The only hope for her survival would be an anti-cancer drug, Glivec, controlled and marketed by Novartis, a pharmacological giant. For years, Novartis had been battling the Government of India to gain patent protection for this product. The penultimate legal action took place in 2007 in the High Court of Chennai in the southern state of Tamil Nadu. Novartis lost again though it appears still to be planning further appeals. Perhaps to appease the public and presumably the courts, Novartis agreed to provide Glivec[4] free of charge to all poor Indian patients in need of the drug[5]. The catch, however, has been that these near-indigent patients would have to make their way either to Delhi, Mumbai, Calcutta, Vellore, or another major cancer treatment center of Novartis’s choosing, to get the drug. Every three months, they would have to return for another round of treatment.

Death in Delhi

So it is that Sonarin Bai learned that she would have to travel to the All India Institute of Medical Sciences in Delhi to get the medicine that would hold her otherwise fatal illness at bay. Her physicians at JSS advised that she return in a week to join seven other patients with a variety of ailments for the trip to Delhi. On July 28, Sonarin came back from her distant home, this time accompanied only by her mother, Sumantri Bai.

Jai Kumar, a member of the JSS staff, had guided patients from JSS to Delhi on two prior occasions.  He knew the ropes.  But this time, for one of the 8, Sonarin Bai, tragedy lay ahead.

Jay Kumar recalling Sonarin Bai's final hours

Jay Kumar's account - Don't cry mother. She's no more.

Day 1 - On July 28, the eight patients and their relatives, numbering 19 in all, boarded the train in Bilaspur. The 24-hour trip to Delhi proved uneventful.

Day 2 – We arrived the following evening and checked in at the darmsala hostel for patients and family.

Day 3 –  I  took Sonarin Bai to the AIIMS Hospital. But she was one of four patients who could not be seen by a doctor as she had no prior registration and we ran out of time to get this done.

Day 4 – The following day registration was closed. “It was an Outpatient Day”.

Day 5 – Sonarin Bai finally got her registration card. But the oncologist to whom she was referred left word that, before she was to be seen, blood tests and x-rays had to be done.

Day 6 – Only the blood tests could be done. Sonarin complained of fever.

Day 7 - We went for the x-ray. The clerk advised: “Go back to the doctor and request that the x-ray be without charge.”

Day 8 – The doctor wasn’t in his office. We went to the Outpatient Department but we couldn’t find him.

Day 9 – We returned to the X-ray Department and paid 30 rupees and the x-ray was taken but no report was given. We were told to return the following day.

Day 10 - We returned to the X-ray Department and got the report. Then we went to the doctor’s waiting area and got in a queue. By then, it was 2 in the afternoon. At 7PM, the oncologist finally saw Sonarin. He examined her abdomen and prescribed some medicine. He explained, however, that he could not be her physician, nor follow her, as his specialty was limited to cancer in children. Therefore, he advised that he would refer her to an oncologist for adult patients. The appointment would be the following week.

Day 11 - I went to a pharmacy and got the medicine. On my return, Sonarin Bai said: “I don’t feel well at all.” I told her that the medicine had come. “Take it”, I advised. Towards evening, she developed stomach cramps and diarrhea. She had a fever and appeared quite ill. We decided to take her in a wheelchair immediately to the hospital emergency room, a fair distance to go on foot. When we got there, she saw a succession of three physicians. They placed an intravenous line. While her mother waited outside on the hospital veranda, one of the physicians came to me and said: She is seriously ill. Soon they informed me that her condition was critical. Then they took her elsewhere in the hospital.

Day 12 - At four in the morning, one of the physicians returned. He approached me and said: Tell her mother, she’s no more. I went to her mother on the veranda outside of the hospital and spoke to her.  Mat ro mataram sonarin ab duniya mai nahi hai. -  Don’t cry mother. She’s no more.

Sonarin Bai's mother, Sumantri, recalling her daughter's recent death in Delhi

Postscript

Why did this poor woman, mother of three, die in Delhi? Here is what I think and have learned to date.

Sonarin Bai did not have to die. She could have received Glivec at JSS and avoided the trip with all the delay, systems failures and fatal neglect in Delhi.

For reasons unknown, Novartis has refused to provide this life-saving medicine to qualified oncologists, and other physicians capable of administering chemotherapy, at reputable medical institutions, like JSS, throughout India where poor patients have ready access and can receive treatment without delay.

Novartis insisted that she, and thousands of others like her, come to a treatment center they have authorized in one of India’s major cities, e.g. Delhi, Mumbai, Calcutta. It is alleged that Novartis may be motivated in part to restrict access points in order to do clinical research on the referred patients at these centers.[6]

Qualified oncologists and general physicians who administer chemotherapy exist in many smaller cities throughout India who could administer Glivek competently.[7]

Novartis on its own web sites makes contradictory statements about which among India’s poor receive Glivek free of charge:

“The price of Glivec is almost irrelevant in India as 99% of the patients who need the medicine receive it free from Novartis...” [8]

Contrast that with the following statement by Novartis: “…In India, 99% of patients prescribed Glivec receive it free.”

Which is truthful?

Is Novartis claiming that it reaches 99% of the patients in India with CML who need Glivek to survive? This is patently absurd. Novartis itself claims that it has treated 6,600 individuals with CML in India. However, S. Srinivasan, an authority on pharmaceuticals in India has written: There are “over 30,000 cases of …CML…reported in India every year.”[9]

Thousands among them are poor. Many are undiagnosed. Only a minute fraction could afford to buy Glivec on the open market or the generic, far cheaper but still prohibitively costly. Others have no way to travel from their villages to the designated treatment centers. They are too poor and may know nothing of the program or how to gain access.

And what awaits patients who do make it to a treatment center after many days and weeks of delay, an arduous journey and a system that fails them on arrival, as it did Sunarin Bai?

When I first interviewed Sonarin Bai, I asked her if she knew why she had to go to Delhi and could not be treated at JSS in Chhattisgarh. Her reply was immediate: Because I am poor. There is no medicine here.

Death in Delhi. At whose door?

Eeswari Bai, 10, July 12, at JSS in Ganiyari
She would not leave her mother's side.

---

[1] Ganiyari is the headquarters site of JSS in the Bilaspur District of Chhattisgarh. All levels of health care are offered by JSS. Patients come from 1,500 villages and an intensive medical and public health program is offered in 53 remote forest villages where JSS has 3 subcenters and over 100 volunteer, trained village health workers and midwives. There is a demonstration agricultural program as well to help farmers produce more organic produce with greater yields, free of chemical fertilizers.

[2] “Chronic myelogenous (or myeloid) leukemia (CML), also known as chronic granulocytic leukemia (CGL), is a cancer of the white blood cells. It is a form of leukemia characterized by the increased and unregulated growth of predominantly myeloid cells in the bone marrow and the accumulation of these cells in the blood. CML is a clonal bone marrow stem cell disorder in which proliferation of mature granulocytes (neutrophils, eosinophils, and basophils) and their precursors is the main finding. It is a type of myeloproliferative disease associated with a characteristic chromosomal translocation called the Philadelphia chromosome. It is now treated with imatinib (the generic name of Glivec) and other targeted therapies, which have dramatically improved survival.” – Wikepedia

[3] 15 cms. below the left costal margin. Even minimal enlargement of the spleen below the rib cage is abnormal. The spleen is the principal graveyard for abnormal blood cells. With a daily huge outpouring of cancer cells from her bone marrow, the spleen became progressively engorged.

[4] Novartis comments: “Sustainable access to medicines in developing countries is complex and requires much more than the availability of generic drugs. Generics alone do not solve the issue. For example, in India the cost of a one-year treatment with the generic imatinib is USD 2,100, or 4.5 times the average annual income. Even our critics recognize that generic versions of Glivec are not the solution for the poor in India. Furthermore, generic makers in India have yet to come forward with an access program for generic imatinib…Glivec is not an exception. As a matter of business principle, Novartis is deeply concerned that patients have access to the medicines they need, as demonstrated by our well-regarded record in social responsibility.”

[5] Novartis reports: “Novartis has secured access to Glivec both in India and globally.

When we launched Glivec, Novartis committed that no patient in need should be denied this life-saving cancer treatment. We fulfilled this commitment by establishing the Glivec International Patient Assistance Program (GIPAP), which is one of the most far-reaching patient assistance programs ever implemented on a global scale.

“In India, Novartis currently provides Glivec at no cost to more than 6,600 diagnosed patients… For more information, please visit the Max Foundation which administers the program, www.themaxfoundation.org.” - Novartis’s official web site.

[6] Personal communication: Dr. Gopal Dabade

[7] Personal communication: Dr. Yogesh Jain, staff physician at JSS; oncologist trained at AIIMS.

[8] Novartis publication “Fact vs. Fiction”

[9] Battling Patent Laws: The Glivec Case, S. Srinivasan, Economic and Political Weekly, September 15, 2007, p. 3686.

The Story of Jethuram - Death by a Rabid Dog

As told by his widow, Sham Bai, in her own words.

Locale: A remote forest village of the Baiga tribe in Central Chhattisgarh accessible only by deeply rutted dirt roads that are impassible at times during the monsoon season.

Sham Bai

Our cows and oxen had gotten trapped in Khuriya, a neighboring village. Jethuram went to get the animals. On the way back, a dog bit him on the lower thigh of the left leg, just above the knee, and the dog ran away. Then, others with him sent him quickly to the village to get treated, and they followed later with the animals. The dog was not known to them. We collected herbs and roots from the jungle. He ate those and the pain lasted for about a week.

For three months, he had no problem. Then he started to have trouble again. Pain returned again to the thigh where he was bitten, climbed up his leg to his stomach and then to his head. He would walk around the house breaking things, like the water pots, and he would also try to hit me.

When he began to behave very badly, one fellow, Lakhiram, told us that if he was brought to Ganiyari, his life could be saved. Someone called Bamhni [1] and they sent a Marshal [2] to the village. They kept him all day and all night in Ganiyari. Even in Ganiyari, he would walk around his room and break things. We asked the doctor what to do and the doctor said he would not survive. So we asked and got permission to take him home.

When he came home, he caused a lot of trouble. We were afraid he would bite us. He would shout and scream like a dog and come after us like a dog. That night we cooked food for the evening meal. He ate it all, but he drank very little water. He wouldn’t sleep. When morning came, and we left the house to work, he locked himself up in the room. While we worked, he prepared tea for us all and served it on our return. But I wouldn’t drink it because I was afraid I’d fall sick as he had been bitten by a dog.

I told him “You are going to die because you have this disease.” He replied that my daughters will marry and go to other homes. “You will find another husband. My son will be an orphan. So I am going to kill you.” He attempted to kill me. When he wasn’t able to kill me, he said that when I go to work near the dam or in other people’s fields, I should make sure that the children get fed. He told our elder daughter that “You must go with your mother when she goes to the forest to collect mahua [3] and when she does other forest work.” He said: “I have five children. [4] How can you take care of so many? Get the land, that I have captured, plowed by someone else so you’ll have crops to live off of.”  He was throwing up while talking to us. As he stepped out of the house, he fell down next to the door. He fell backwards into the house. He vomited like a dog, lots of foamy vomit and then he died.”

On a daily basis, I think that if my husband were here, how much better I could manage. My heart is pained at the thought of his death. I didn’t have the courage to enter my home for three months after he died. I got scared whenever I thought of him. The children also were scared so we took down the house and got a small room. That is where we are staying now, close by.

When he died, I had to borrow 4,000 rupees to pay for the funeral. There is no one in the village to help us plow our fields, so our land is lying without use. He didn’t have any brothers living. They all had died of fever so I had no one to ask for help. I have brothers who live in Boiraha and asked them to help, to plow and sow the fields, but they didn’t agree to help me. Since there is no one else to help me, I am the only bread-earner in the house and I work as a laborer in other peoples’ fields. With the 40 rupees I earn most days, and the grains I am able to buy from the Society store [5], we have to get by. There is no one in the village to bring us rice, so my daughter and I go to Patpara to get rice. We each carry half of the 35 kilogram load. It’s a seven or eight kilometer walk each way.

Anything else?

Mola koi Posaiya Nikko. There is no one to take care of me. These are the exact words. I went to my panchayat [6] and this is what I said. I told the panchayat to get me some help because I have no help. I even had to submit my Parichaya Patra (ID card) and other papers. They checked if I had registered his death at the police station in Lormi [7]. I got the necessary documents from the block headquarters and submitted them at the Khuriya Forest Range office. The officer in charge of my village told me that he would send these documents to the next higher office in Bilaspur and would let me know when a check arrived in my name. After that, this office never contacted me again.

I returned to my panchayat. The sarpanch [8] told me my village was no longer under his jurisdiction. He sent me to another panchayat at Danghaniya. The new sarpanch noted my name among those who needed a nirashrit pension [9] but this too proved empty. I haven’t gotten anything from anywhere. It’s been over a year now.

We eat about 1.5 kgs. of rice in our home daily. When the rice I buy from the Society is used up, I have to buy khanda (broken rice) from the market.  And when I can’t afford even that, I borrow rice from other people’s homes. I am in constant trouble but I still work hard and I still feed my children.

*************

Postscript: Sham Bai’s husband is dead. One could say that poverty killed him. People bit by rabid dogs no longer die in the Western world. More people die of dog bites in India than in any nation on earth – at least 30,000 a year. The number is doubtlessly under-reported. Sham Bai meanwhile lives on, but stoically and painfully. She has four little children to feed and bring up – all alone. Her patience and her courage are remarkable. If you might like to help her, let me know.

Sham Bai with Manakram, 2, the youngest of her four children

Once the monsoon rains abate sufficiently and the roads permit a home visit, there will be a note added to this account.

---

[1] Bamhni is the remote forest village where JSS maintains a sub-center. It has a permanent staff of two senior health workers and support personnel. Physicians from Ganiyari, the village location of the JSS hospital and administrative headquarters, hold weekly clinics and monthly training sessions for over 100 village health workers and midwives at Bamhni.

[2] A four-wheel-drive vehicle maintained by JSS for ambulance and patient transport over the rough terrain of the forest region.

[3] An edible flower

[4] The elder daughter has since married, leaving four dependent children at home with Sham Bai.

[5] A reference to one of thousands of local government food stores that dispense grain at subsidized prices to families certified to be “below the poverty line”. Many poor do not qualify for this grain, usually rice or wheat. Moreover, I have yet to meet a family that hadn’t run out of the government-supplied grain by the middle of the month.

[6] The village council

[7] The block headquarters.  The block is an administrative unit of local government with 100 or more villages.

[8] The sarpanch is the elected head of the panchayat or village council.

[9] Literally nirashirt means “without help” –  hence, a pension for a destitute person.

The Story of Kala Bai - Tuberculosis of the Spine

A medical cure…and then what?

Kala Bai, 22

The illness

Kala Bai, 22, last felt her normal self two months before taking the arduous journey from her mountain village to the hospital at Jan Swasthya Sayog (JSS) in Ganiyari.^[1] Given the severity of her illness, this journey must have been of epic proportions.

Kala Bai had been experiencing increasingly severe back pain. The pain traveled from her mid-back, centered over the spine, to both legs. In July 2010, when first seen at JSS, Dr. Yogesh Jain^[2] took the history of her progressive disability. At the beginning, she felt only tingling in her legs. As the pain became more severe, she noted increasing weakness in both legs. By July, she felt so wobbly walking that she feared falling at any moment. Now, severe pain is her constant companion.

On examination, Jain noted a bulge the size of a walnut in her mid-back, directly over the spine. Clinically, he instantly knew the likely diagnosis: tuberculosis of the spine, commonly called Pott’s Disease.^[3] Pott’s Disease has all but vanished in the West but is often diagnosed in rural India. A confirmatory MRI is planned.^[4] On this first hospitalization, Dr. Jain initiated three-drug, anti-tubercular therapy.^[5]

Kala Bai on her hospital bed with her four month old daughter, Ritu

Her appetite is poor and her weight of 32 kilograms (70 lbs.) that of an eleven year old child and the result of pervasive hunger and semi-starvation. Such chronic malnutrition is a principal contributing factor to her susceptibility to the spread of tuberculosis to her spine.  Her recent pregnancy and the stress of childbirth, are additional major factors that undermined her immune response.^[6]

The long haul

There will be no sudden cure, no sudden relief. Nine months of drug therapy lie ahead. Until her illness incapacitated her in recent weeks, Kala Bai’s days consisted of housework, caring for her two children, weaving baskets and working as an agricultural laborer during the monsoon season.  She and her husband scraped along, among the poorest of the poor, together earning 100 to 150 rupees daily. Now, her illness is so advanced that she can’t even weave baskets, cook or wash clothes. Routine care of her two small children is impossible. She can’t even lift up her infant daughter. Nor can she travel to her home in Kurdar village, a five kilometer walk up a steep, rutted path. A 100 meter walk is about her limit.^[7]  So she, her husband and children have taken temporary refuge in her parents’ home in Aurapani, a village not far from the base of the mountain. And there’s the rub.

A full-blown tragedy

Visiting her at her parents’ home, the fuller tragedy became apparent. Out of earshot, her father confided that the welcome mat will not be extended much longer. She, her husband and children are too much of a burden for his poor household and must leave soon. “We are too poor and have no space”, he told us. Moreover, he admitted that he expects that her husband, an abusive alcoholic^[8], will soon abandon her for another woman. From the poorest of families, fully aware of the many months of disability ahead and the likelihood of eviction and abandonment, she lives with anxiety at every moment. "Nine months is an unimaginable eternity", she says.

Kala Bai with her father and her daughters at the entryway to her parents' home

Closing comment

Here we have a young woman, mother of two, literate and bright, whose future is as bleak as can be imagined.  Capable of reading books, she readily confides that she has not read one in four years of marriage: A poor person like me never has a chance to read a book. No income, no savings, total disability, no one to help, plenty of fear, no hope.

What is our responsibility?  No question: to save this woman and many like her.  Impossible? Not at all. You join in, I’ll join in. We pretty much know the challenges. We can work through – and team up – with groups like JSS in Chhattisgarh and see that this tragedy and others like it are brought to an end…and not at some vague never-to-be-seen “tomorrow”.  Foolish nonsense? If you and I think so, we’re the pain in Kala Bai’s back, the weakness in her legs, the ache and hopelessness in her mind and heart.

Beyond Kala Bai’s immediate need, we can help local groups like JSS set up village-level agricultural cooperatives producing produce that can sell locally, producing significant revenue^[9], preventive healthcare for those at risk, cures for those who are curable, literacy programs and solid educational opportunity for those that lack, and social service programs for the elderly, the handicapped and chronically and long-term ill like Kala Bai.

Kala Bai will be helped. JSS already has her on the road to recovery from the slow death of tuberculosis. JSS will also provide financial support through a fund that may spare her the anguish of abandonment. With a pittance of income from the JSS fund, there’s a fair chance that her father and husband will relent.^[10] We can contribute to support her through the crisis of her illness. There could be a happy ending to this story.

Kala Bai smiling

What use is it to spare her life through timely medical intervention and fail to help make her life worth living?

Postscript

After writing this story, I must sadly report that Ritu, 4 months old, fell into a fire and sustained extensive burns on her left arm. She is now admitted to the JSS hospital in Ganiyari for debridement and treatment of the ensuing infection. Kala Bai is with her.

Footnotes

---

[1] To get to Ganiyari from Kurdar,  she had to walk for four hours from her mountain village to Aurapani, a larger village, then two or three additional kilometers to Samariya, a market town, where, finally, she caught a bus to come to Ganiyari. The bus trip, which cost 20 rupees, took 3 hours.

[2] Dr. Jain, a reknowned pediatric oncologist and, now, general practitioner as well, is a founding member of the group of eight physicians that came to Ganiyari in 1999 to found JSS.

[3] The history and then her neurological examination re-enforced the diagnosis – hyperactive reflexes and loss of muscle strength in the lower extremities. Tuberculosis has infiltrated her spine, a condition known as osteomyelitis.

[4] If the MRI shows a collection of pus at the site of the lesion which has caused osteomyelitis and is putting pressure on nerve roots, then surgical intervention will be considered unless Kala Bai shows progress on re-examination after a month of therapy. If improved, medical treatment will continue for most of the year ahead.

[5] Compliance issues loom large in India’s villages. But Kala Bai is an intelligent woman, 8^th standard graduate and literate. Compliance is not likely a problem.

[6] National data in India reveals that extra-pulmonary tuberculosis is found in less than 15% of cases. However, among the extremely poor in the 53 villages in the JSS service area, 43% of patients present with tuberculosis of many other organs, e.g. the bones, as in this case, the stomach, even the brain.

[7] Often impassible in the monsoon season, there is road access to Kurdar Village, a 25 km ride.  Yet, due to her incapacity, Kala Bai can’t return to her mountain home for many months either by foot or in a vehicle. There would be no way to get down in case of emergency or for medical appointments and diagnostic tests.

[8] Alcoholism among village men in India is rampant. It is often accompanied by verbal and physical abuse of wives and impoverishes many a family.

[9] JSS early viewed such agricultural cooperatives as a partial answer to the profound poverty in adivasi communities. The demands of the JSS medical program proved of such magnitude, however, that this initiative awaits funding and core staffing to bring it to reality.

[10] In this case, a stipend of as little as 2,000 rupees ($40 U.S) per month may be all that is needed to see Kala Bai through this crisis.

The Story of Dalsingh – A fatal snake bite

As told by Aghni Bai, his mother

In the face of death, he said: Ram Johar – Goodbye to All

The locale : A forest village of the Baiga tribe in the Achanakmar Tiger Sanctuary, 70 kms. north of Bilaspur in central Chhattisgarh, India.

Aghni Bai

Her story in her own words

The night he was bitten
It was the month of Sawan (1), three years ago, the day of the festival, Hareli (2). We had eaten well and retired to our separate homes. We all lay down on the floor and went to sleep. Three daughters of my elder son, who had been visiting, were spending the night with me. My son, Dalsingh, was asleep in his home, next to mine, with his wife, two sons and three daughters. (3)  Sleeping on his side, Dalsingh awoke suddenly feeling something cold on his neck. That is when he realized something was there. When he felt the cold, he said What is this? He picked it up and it bit him on the wrist.

Aghni Bai pointing to the site of the bite

Dalsingh saw the snake and the snakebite in the dim light of the lantern. He shouted from his house: Mother, Come! I have been bitten by a snake! He took a stick and moved it out of the house. He said: Let us not kill the snake. Let’s just get it out of the house. The snake climbed up the mud wall of the house and crawled in a hole in the brickwork and that is when we realized it was a poisonous snake, a Karaith (The Common Krait). (4)  I recognized that snake.


In the dark of night, I collected the elder villagers and shouted that they come and they came. There was much confusion and running here and there. It was still dark, the predawn hours. Several villagers ran to the forest and, with torches and by lantern light, dug up the roots of an herbal plant for snake bite. They returned immediately. The roots were ground up and mixed with a cup of water. The paste was placed on the wound on his wrist and he was given the same mixture to drink. We also called a jholachap (a village doctor) from the nearby village of Danganiya. (5)  He came and gave Dalsingh two injections, one in the left arm and one in the upper right arm.

Once all the remedies proved futile, Dalsingh spoke: My mother and my brother : I know you will not be able to save me now. He put his hands up, Ram Johar (Saying goodbye and paying respect to all present). (6)

Aghni Bai showing how her son said Ram Johar (Goodbye) on dying

He did not talk of pain but he must have been in pain because of the swelling of his hand and arm. He was alert the whole time, though lying down. Before he died, his whole body had become yellow as if someone had put tumeric powder on it. We continued to give him the herbal medicine throughout the pre-dawn hours. At first, his fingers puffed up and separated. By early morning, his arm had become hugely swollen up to the elbow. As the cock crowed, he died.

Following Dalsingh’s death
Later, in mid-morning, once Dalsingh had died, boys in the village cracked open the wall, took out the snake and killed it. It was that long (shoulder to hand). It was a ghoda karaita. (7)

Aghni Bai showing the length of the snake

My son believed that if the snake was killed immediately after he was bitten that he too would die, so he didn’t kill the snake. I believe that as well. Only after his death could we kill the snake. When my son was bitten, someone must have done jaadu tona (black magic) on him and that must be why the herbs and the injections didn’t work. My son was educated through the 8th standard (8), so that when forest officers or the sarpanch (the head of the village council) came to the village, they would always talk to him. That is why some were jealous of him. Others have taken these herbs and have gotten better.


The funeral
My sons and I had a funeral and we fed everyone. After eating, we all went and washed our hands in the lake. (9)  I had to borrow 3,000 rupees from his wife’s family. I could not pay the debt so I gave them Dalsingh’s harmonium. (10)  It would have been very difficult for me to meet these expenses alone, so my elder son and Dalsingh’s widow, Laliya, also contributed. But I still shoulder 2,000 rupees of debt from the funeral. (11)


Persistent fears
The children remember little as they were very young but they do ask what happened to that uncle (12)  who was bitten by a snake. When the first rains arrived this year, the children were on the veranda. There was lightening and they saw a snake entering. Greatly frightened, they cried out. My elder son came and killed the snake, another poisonous krait. It’s not common to see snakes. Only when the first monsoon rains arrive.


Ever since, I live with that night. I keep a stick under the khatiya (a cot). (13)  Any noise at night wakes me with a start. Is it a snake? Or a mouse on the roof rustling about? I get up with a torch terrified and look into every corner of the house. When I go back to bed, the children ask: "Why did you get up?" I make up a story like “An insect made a noise.” I do not tell them of my fear of a snake. They fear snakes so, and I do not want them also to be frightened. Then I get back under the mosquito netting and try to sleep.


Her struggle since
Dalsingh left behind a tiny daughter, Panchvati, who is six now and has just been admitted to school. She helps me out, bringing water to the house. So I have tied her to my side and brought her up. Dalsingh second daughter, Phul Bai, is 10 and in 6th standard. I am bringing her up as well.


Since Dalsingh’s death, I have to support myself and my two granddaughters. I work in the fields from 8 to 4, four or five days a week, earning 40 rupees daily. As I am elderly, I can’t plow my land, so I give my land to others to work. I get half of the harvest. If it rains well, the land produces about five sacks of grain. Two sacks go to the person helping in the field, two go to me and the fifth is for seed. (14)  And for the past three years, I’ve served with three other elderly women in my village as a dai. (15)  For this, I receive a 100 rupees a month to attend an overnight training in Bamhni and 50 rupees more goes to the dais credit group. (16)  I walk for about an hour and a half to get to Bamhni every month. With the 100 rupees, I buy rice, and I have applied to the government for a widow’s pension but have heard nothing for the past five years. (17)


No elderly widow in the village like me has ever received a pension. But if I do get one,
I’ll keep it to take care of the children well, to bring them up well and to pay off my debts. I’ll save some for the children’s future. Once my granddaughters grow up, I’d like to get them married. They are now both in school. I can get them educated until the 8th standard by sending them to other villages close by. Soon after that, they can be ready for marriage and will be more intelligent. Better in marriage for girls if they finish the 8th standard. (18)


Emotional aftermath of Dalsingh’s death
I have a lot of pain in my heart. I cry a lot. I think When will I be united with him again? Tears come to my eyes whenever someone reminds me of his loss. It feels like I have lost my soul.


Footnotes

(1) Sawan is the 5th month of the Hindu calendar and runs from July 16 until August 16, the height of the monsoon season.
(2) Hareli is celebrated each Sawan, the end of the season of planting new crops to give thanks, a puja, for the farm implements that made the planting possible and to pray for a good yield.
(3) Dalsingh’s three daughters were from his first marriage with Ramkali. When she died of cholera, he married her sister, Laliya. They, in turn, had two boys. Following Dalsingh’s death, Laliya remarried taking her two boys with her. Dalsingh’s oldest daughter also is now married. The two younger girls live with their grandmother, Aghni Bai, herself a widow.
(4) The Common Krait is one of “The Big Four” - the poisonous snakes considered responsible for the most fatalities in India. The others are the Russell Viper, the Saw-Scaled Viper, and the Indian Cobra.
(5) An untrained village medical practitioner. Typically, they give saline injections regardless of the nature of the illness.
(6) A common term for farewell or goodbye among the forest people. 
(7) There are different kinds of poisonous kraits in the villages of this region, a banded krait and the common krait, a ghoda karaita, as in this instance. 
(8) Eight years of formal schooling, the completion of primary school, is considered quite an achievement in village India, though short of high school.
(9) A ritual cleansing that follows the cremation of the body and the ritual meal.
(10) It is common to find three or four harmonia in the adivasi villages in central Chhattisgarh. Dalsingh used to play it while singing Chhattisgari folk songs. The instrument is valued at about 300 rupees. 
(11) The funeral ritual goes on for 10 days. The berieved family give the guests daru (an alcoholic beverage). The village collectively gives the widow distinctive clothing and glass bangels to identify her to all persons thereafter as having lost her husband.
(12) Besides its literal meaning, Uncle is also an honorific term for an older person to be afforded respect.
(13) A khatiya is a cot made of a type of wood from the forest called balli across which strips of canvas are stretched.
(14) The two sacks of paddy (rice) will provide for about three months of this staple of the Indian diet for a family of three. Additional rice is provided by the government for persons certified below the poverty line, but this subsidized rice last only about half the month for most families.
(15) A dai is a village midwife. 
(16) Jan Swasthya Sahyog (JSS) maintains its most distant subcenter at Bamhni, a remote forest village, two and a half hours by road from its main facilities in Ganiyari, a village in the Bilaspur District of Chhattisgarh. In Bamhni, JSS physicians and senior health workers hold monthly trainings for over 150 volunteer village dais and village health workers.
(17) As astounding and improbable as this sounds, it is confirmed by Prafull, the JSS head village specialist. He explains that the sarpanch or village chief is elected every five years. In this case, Aghni Bai fell between stools. A new sarpanch came in and as is so often the case, the application process has defeated the whole purpose of the pension provision for the totally helpless and destitute, such as elderly widows. Moreover, Aghni Bai, and others like her, had no idea initially of her entitlement. She learned of this possibility from a staff doctor at JSS.
(18) Marriage at such a young age (about 13) for a village girl is common and completion of the primary school grades a source of pride.


PART II – A Visit To Aghni Bai’s home will follow.