Cherwas belong to the adivasi community in India and are listed as a subcategory of Kanwars, a scheduled tribe as per the Indian Constitution. The adivasis form around 9% of our population and is a heterogeneous community of more than 700 different tribes. They are located mostly in the central and eastern part of India. They form 30% of the population of Chhattisgarh. They stay predominantly in rural and forested areas in Chhattisgarh. Their lives and livelihood depend on forests, forest produce and agriculture.
COVID-19 pandemic which has affected lives across the globe for more than 18 months now reached the villages and forests of India with much force, second time around in the summer of 2021. I was working in the intensive care unit of a government medical college in Chhattisgarh at that time. Each day the story repeated itself. She/he was alright till about 10 days ago when a benign fever and cough suddenly led to breathing difficulty and a dramatic drop in oxygen levels which is when they went to a hospital and got tested for COVID-19. As more and more people were being tested, getting hypoxic and coming to ICUs and hospital wards, we knew a new disease was settling in the midst of the marginalized. The disease and the pandemic has been a great teacher for our medical eyes which are socio-culturally blind. A new rapidly changing virus that spreads through tiny droplets sprayed in the air when we talk, shout, sing, cough and sneeze and cause a deadly illness in a significant percentage of people who get infected meant that all available health care resources were stretched in most parts of the country. A technical lens on the disease would lead us to believe that everyone on the planet has an equal chance of getting the disease. There would be calls to convey solidarity globally and that all of us are in this together. The story however is different in reality and perhaps expectedly so.
As with all the other infectious diseases and the pandemics/epidemics in the past, it is not so simple. Diseases and pandemics mirror the social reality of the societies we live in. Tuberculosis, a disease caused by a respiratory pathogen and spreads like SARS-COV 2 has a story to tell in this regard. A disease which was named ‘The White Plague’ in Europe and was an epidemic across the world including affluent western Europe in 17th, 18th and 19th century. As more treatments and therapeutics along with better standard of living and hygiene emerged, the disease began to get localized to the marginalized and poor locations in the world of Asia, Africa and South America. The deaths it causes and the ensuing disruption in the working class people across the globe is disproportionately more than the privileged amongst us. This has been true for India as well and we now see Tuberculosis continues to be ‘The White Plague’ in people living in urban slums, rural and tribal areas. COVID-19 is now meeting a similar fate.
A 30 year old man came into our ICU with a more than atypical history. He has had fever for about 2 months, more in the evening, a decrease in his appetite and cough for the same duration. His symptoms worsened in the last week or so when he also started developing loss of consciousness and was taken to a nearby government health facility. His oxygen saturation was noticed to be 80 % and he tested positive for COVID-19 and was referred to our ICU. His blood investigations, Chest X ray and other investigations gave us reasons to believe that he had coexisting Tuberculosis too. What meets our eye clinically has a social reality to it. The patient Vishnu (name changed) was an adivasi working seasonally in his small land holding and was unemployed for the rest of the year. He was accompanied by his wife who accompanied him and had 2 kids at home, 5 years and 2 years old who were being looked after by relatives staying in the same village. His wife Laksmi (name changed) had stepped out of the familiar terrains of their village to a nearby town itching to be a city for the first time. The hospital building was the largest manmade structure she ever visited. Navigating the different lanes of the hospital premises was understandably nerve racking for her. She was scared to talk to any one of us wearing those robot-like dresses covered head to toe to protect ourselves. Talking to her about her husband was as difficult as it gets. The status of the patient and his family was a reflection of the conditions of the adivasi community in the country. The socioeconomic conditions, household living conditions and educational status were all well below the levels of everyone around them including other patients and staff members. She understandably felt intimidated in this unfamiliar place and environment with people dressed in space suits coming from a contrasting socio-cultural background speaking a foreign language. The questions in my mind were- ‘How do I explain to her about her husband’s condition? What disease does he have? What are his chances of survival? How much information is necessary and yet would not overwhelm her?
For Laksmi, the questions may have been different- ‘where do I find myself and my husband in? Who are these people? Are they trustworthy to be talking to them? What are they doing to my husband and is it going to help him in any way? What happens if they tell me something that I don’t understand? I already don’t understand their language fully. What is happening back home? How are the kids doing? Did they get something to eat? What if they ask me to get some medicines or ask for some money? Can I find someone familiar here?’ I could sense we were on very different pages when we interacted for the first time. I conveyed whatever was necessary and possible medically. She was neither able to comprehend, understand nor process whatever little information she received. She was either emotionally overwhelmed and lost hope or couldn’t convey the most important and also the most frequently asked question in our ICU, ’whether he would survive this ordeal’. I knew then the generations of privileges I accumulated were the bane in my communication with her. I provided the best possible technical/medical support. She aspired for things greater than that. Emotional and socio-cultural support in this alien setting for her was perhaps the first aid needed. We did try to do that. That it was not enough at the time was a result of a reflection which is difficult to acknowledge while we deliver technically appropriate medical care. She could not relate with us at any level-socio-economic, cultural or educational. The reasons were the difference in privileges that we enjoyed over our lifetimes. Our therapeutic relationship needed a dose of solidarity and not charity, love and not pity and empathy and not sympathy.
Over a period of a few days as Vishnu’s illness waxed and waned, she began to feel much better in terms of interacting with us than what she felt on the first day. Her conversation improved with everyone in the team. The efforts put in to improve the relationship needed special attention and everyone chipped in to that effort.’ Laksmi should not be sent to get any of the administrative work related to Vishnu’s file’ was the rule in our team. Work like getting the insurance plan activated, an investigation that needs to be done or a report that needs to be collected needed help. The doctors, nurses and nursing orderlies everyone took bits and pieces of those responsibilities. An extra plate of food was ensured without anyone stating this explicitly. All these things and the medical care during the next few days meant she began to share her concerns about her husband’s health and their family condition back in the village. She now wanted to know what the X ray and the CT scan tell about Vishnu’s condition. How can he get better soon!
The answer to her last question was getting certain as days passed and one thing failed after another. Vishnu had worse of both the respiratory pathogens- Tubercular bacteria and SARSCoV-2 virus. He had his lungs, brain and kidneys involved with one or more of these organisms and his course in the hospital was a downhill one. His illness was a reflection of centuries of inequities manifesting in the form of two diseases. A novel disease of our generation and a disease for the ages both were there for us to see medically. The common factor though was the generations of marginalization and how that is the biggest determinant of the outcomes of both these illnesses.
I knew we had to talk about Vishnu’s deteriorating condition and the imminent danger to his life with Laksmi. Up until then she was interacting well with everyone for both medical and non-medical reasons but kept her conversations with me more formal. I knew we would need to go beyond the formalities now. We began by discussing what she felt about Vishnu’s health almost a week into the ICU, what all she understood and what she wanted to know. We also discussed who all are there in her family again and who all knew about him being admitted in a critical condition and extended any help. As I started knowing more about her understanding and perceptions of the illness and the state of her husband’s condition, I knew I could share what I felt about his health. She broke down for the first time since Vishnu was admitted and sobbed for about 15 minutes. She shared she is most concerned about her children who are too young to understand any of this and how it would be extremely difficult for her and the kids if Vishnu did not survive. This time in our conversation she was the one speaking more than me. She came back after our conversation ended to tell me this- ‘Please take some money. We have a lot of money back in the village and I will sell our land but please save him by whatever means possible’. I had no words this time around. The offer of taking a bribe was not a surprise as we were used to such offers more than a month working as part of medical college (on a contractual basis for the duration of 3 months due to the pandemic). Both of us knew she did not have the money, both of us knew the money would not have made the difference to Vishnu’s life and yet the desperation of the situation got the better of her. She wanted us to make whatever efforts we could have made. That she chose money as a way to ensure that was a reflection of the society that we live in!!
She then sat beside Vishnu holding his hand that evening. I went to check on her and wanted to send another blood investigation that needed a needle to be poked to get a sample of blood from his veins. She politely refused for any more tests and injections and thanked us for the efforts put in so far. Vishnu died that evening!!
– Chetanya Malik