‘Each burning pyre is an unspeakable horror’: One researcher’s account of India’s Covid-19 crisis

Global health researcher Vyoma Dhar Sharma had just embarked on a fieldwork trip to India as Covid-19 began sweeping through the population and overwhelming hospitals. It took a terrible toll on India – and her family.

August 25, 2020

It was pouring by the time my taxi reaches Oxford’s Gloucester Green bus station. I dash through the rain towards Heathrow bay as the X90 coach pulled in. The driver got down to smoke a cigarette and we talked, about Covid-19 obviously. He said he did not know of a single person who had died of this disease. “You only hear it on the news,” he said. “Frankly, unless people start dropping dead on the street, I am not believing it”.

A few hours later I was on an Air India repatriation flight to New Delhi, flying home for fieldwork. My study explored how global public health policy, scientific research and medical practice affect women’s health in India. Global health research is driven by statistical and empirical methodologies, typically sidelining people’s experiences of illness and care-seeking within health systems.

And while gender is widely recognised as a major factor when it comes to good health outcomes, the focus on women’s health is normally limited to reproductive function. This leads to a systematic marginalisation of health issues, such as menopause, uterine prolapse or cervical cancer – all of which lie beyond pregnancy and childbirth. So my work is driven by the need to understand how these issues affect the health of women in countries like India and how they experience the health systems which are supposed to be looking after them.

I broke the government-mandated quarantine two days after arrival. A little past 10:30 pm my masi (aunt) called, frantically informing me that she just found Nani (my grandmother) unconscious in her bedroom. She was alarmed by the thud of Nani’s walking stick and rushed to find her on the floor, next to her bed.

Masi is unsure if she slipped or fainted. The neighbour’s son and my aunt somehow manage to carry Nani, 78, downstairs and take her to the hospital. By the time Mum and I reach Ram Manohar Lohia, a government hospital, it is midnight. We sprint past people standing, sitting, sleeping on the pavement and in the stairwell.

Everyone seemed quiet. Mum rushed into the emergency room while I waited, watching stretcher after stretcher making its way in and out of the lifts. I read and re-read the Ministry of Health posters on coronavirus symptoms and safety guidelines. Everyone was wearing a mask. Some were wearing two. The hospital was packed and social distancing was impossible. Someone brushed past me every other minute.

Covid-19 cases have been rising for months, creating exorbitant pressures on health personnel and infrastructure. In the middle of all this, lockdown restrictions were eased in June. Later in this week, India will witness over 78,000 new cases in 24 hours – then the highest single-day increase in the world.

Hours later, I finally saw Nani, inert on a gurney, being lifted into an ambulance. She was transferred to Sir Ganga Ram hospital. After a standard admission test, Nani turned out to be Covid-19 positive. She was placed on ventilator support and spent the next 15 days in the Covid-19 intensive care ward in complete isolation. The doctors diagnosed her case as a cerebrovascular accident – a left hemisphere stroke that paralysed the right side of her body and compromised her ability to speak, swallow and breathe naturally.

September 13, 2020

Nani was shifted out of the Covid-ICU. Mum and Masi were practically living at the hospital. They slept on the benches in the waiting area. They refused to eat. They spent hours chanting for Nani’s recovery. The doctors were contemplating a tracheostomy (when an opening created in the neck so a tube can be inserted into the windpipe to aid breathing) to take her off the ventilator. Other than that, they offered terse, infrequent updates on Nani’s condition. Over tea in the hospital canteen, Mum was fretful: “They do not say anything, do not tell us anything.”

“I read on WhatsApp news,” begun an uncle who was joining us that day, “that Covid is not a virus, it is a large-scale conspiracy for population reduction”. His wife chipped in on how the shastras (Hindu scriptures) predicted this kind of devastation hundreds of years ago.

I visited Nani in the ICU a few days after the tracheostomy. She was made to sit on a recliner. She did not move but looked up when I address her. I was scared of being alone with her. She refused to close her eyes, insisting that I acknowledge our mutual awareness about her condition. There was a catheter pipe sticking out of her hospital gown, a wide tube piercing her trachea, a nasal feeding pipe, an IV drip on her wrist and an oximeter to measure how much oxygen there is in her blood on her forefinger.

I had never liked the word “vegetative”, but my revulsion for it viscerally came alive that day. In the next bed, there was a man weeping and hugging the unconscious body of his father. I swallowed the lump in my throat and asked Nani to give me her left hand if she can understand me. She did. I held her hand in mine, rubbing her arm gently and weakly reassuring her about her recovery. When I left, I did not have the strength to look back, but I knew she is watching me walk away.

September 26, 2020

We brought Nani home and set up a room for her. It was still unsettling to meet her gaze when she was awake. For us, her inability to speak was the most painful part. My aunt kept recounting tiny details from that night in August – the dinner, the fact that they had a slice of mango each, where Nani’s flip-flops were placed, the lights, Nani’s exact position on the floor.

My mind went to Nani’s portfolio of anecdotes, the ones we grew up with. With these stories, the charm lies in their out-datedness. For example, a village-based relative who went to Simla (a city in northern India) for an exam and was so gobsmacked at the sight of a light bulb in the invigilation hall that he forgot to fill in his answer sheet. Or people running amok at the sound of a bus horn before they got used to it.

On each visit, I would hug her and say, “Nani, you are shrinking!” That made her laugh.

October 3, 2020

I wonder if she found it odd that all of us wore face masks around her. Did she recognise us? We tried to cheer her up. We told her that summer is passing. We promised to take her to the hills when she recovers. She could hear us because she contorted her face into a baby-like grimace and cried. She made the same face every few hours when the nurse performed suction inside her mouth and the tracheostomy tube.

The patient monitor beeped at a consistent shrill decibel every other second. At first, it felt as though our collective heartbeats ran with the fluctuating numbers of her pulse and oxygen levels. You could not have ignored it. It was clockwork.

I spent most of my time in my room, trying to drown myself in desk-based research, given the restriction on in-person data collection during the pandemic. I sent out interview requests to public health practitioners and women willing to speak to me about their gynaecological issues and their experiences of the health system.

A senior public health communication specialist I know feels that the progress on women’s health is now “two steps back with Covid-19. Is there any other research happening besides Covid-19? The government wants to hear Covid-19, so everyone is making them hear Covid-19”.

Over the next few months, academics tried drawing attention to the gendered manner in which the pandemic has compromised sexual and reproductive health and the physical and mental health implications of working from home in India.

Meanwhile, a social anthropologist, based in Uttar Pradesh, and I spoke about the impact on women in rural areas. She told me how antenatal visits had stopped during the lockdown, women were not getting iron supplements or sanitary pads. “No one paid attention to all this during Covid-19,” she said.

One can argue that epidemics do not so much create gendered suffering and socioeconomic inequalities but, instead, reveal it. They reinforce inherent issues within global health and clarify the terms and conditions on which women receive care.

In one of my interviews, the head of a Delhi-based sexual and reproductive health advocacy organisation said: “The lockdown was the worst phase for unmarried women.” Women working or studying in Delhi had to quickly rush back to their hometowns when the nationwide lockdown was announced. “Many discovered unintended pregnancies … They did not know what to do. They could not tell their parents. They could not say why they wanted to step out. We got calls from Jaipur, we got calls from Delhi to ‘help us out in anyway. I can sneak out of my house at 2 am to get the abortion done. I will walk to the hospital’.”

October 14, 2020

I reached out to over 40 gynaecologists (almost all women) across four famous private hospitals in Delhi and not a single one agreed to an interview. I drew snippets from what my other interview participants told me about the kind of care they have received from their specialists in recent years. A 27-year-old told me she once opened up to her gynaecologist about having tried to take her own life. “I often wonder why pretty girls like you try to kill yourself,” the doctor responded.

Another medical student was prescribed contraceptive pills as a 14-year-old to regulate her periods. When she asked what the medicine was, the doctor told her that “taking these everyday makes a girl more beautiful”. No further or accurate explanation was offered.

A woman in her early 30s told me about an exceptionally bad urine infection for which she consulted a doctor online. While the acute pain had subsided, she told the doctor that she continued to feel weak. “Do not be dramatic, if you are not pissing blood, you are fine,” the doctor snapped back.

Yesterday, Nani was diagnosed with drug-resistant pneumonia. She slept through most of the day and did not respond to our words. Every day after finishing work, I sat beside her. I slipped my fingers through her left hand and asked her to grip it. Most of the times she was unable. Unwilling. Today, just as I was about to draw away my hand from hers, she weakly held it. I felt like she asked me to stay a little bit longer, have a little more faith. Her pulse raced over 100. I realised I am crying into my mask.

October 20, 2020

Nani had not opened her eyes in two days. She was running a fever of 102 and a pulse that jumped between 135 and 33 within hours. Masi no longer left Nani’s room. She constantly played bhajans (religious hymns and songs) on her phone, placing it on Nani’s pillow. To me, they sound menacing, not soothing. Around 6 pm that evening, I went into the kitchen and found Mum pouring gangajal (holy water, collected from the Ganges) into a small steel glass. “Mummy does not look right,” she said.

I walked into Nani’s room. Someone has put tilak, a tiny dot of sandalwood paste, in the middle of her forehead. There were thin gold hoops in her ears and two pink bangles on each wrist. She was dressed up. Prepared to depart. She was breathing deeply. No, she was gasping for breath.

Mum and Masi hug Nani, whispering belated apologies for harsh words in the past and reassuring her that she can leave if she wants to. We huddled together around her bed. We took turns rubbing her hands and feet. Masi tried massaging her chest. Later, on multiple occasions, she mentioned that it felt spongy, filled with liquid. Her pulse drops below 50. Nani continued to make raspy sounds.

The reading on the small pulse-oximeter connected to her finger continued to fall dangerously. The nurse took a stethoscope and looked for the pulse. She did not say anything. We did not ask. My gaze veered frantically from the oximeter to Nani’s face and then rested there. She lifted her head up from the pillow and drew her final breath.

November 11, 2020

When the doctors prescribed a tracheostomy, I looked up a few scientific papers on the viability of the procedure in elderly patients and post-discharge care. Poor survival rates were a prominent finding but for Nani, it was also the only viable course of action. However, none of the papers mentioned that when you remove the tube, it left a coin-like hole in the throat of the deceased. And as you prepare your grandmother for cremation, the wound leaks yellow purge fluid onto your hands.

On Nani’s terhavi (the 13th and final day of mourning), visitors come and go, discussing how and why Nani’s condition spiralled. “She caught corona the night they took her to RML.” “Was the stroke what they call long Covid?” “The pneumonia was Covid-related.” “No, it is common when you are on ventilator support.” “The tracheostomy caused the infection.” When the mourners exhaust opinions on the deceased, they turn to the disease.

The common opinion around the room is that Covid-19 is a sham, a made-up disease. I needed to get out. I took a taxi to Connaught Place, the large commercial centre and tourist spot in Delhi, and started pacing around the inner circle.

An elderly female hawker approached and pleaded with me to buy flowers from her. She was barefoot and spoke slowly. She said she had not eaten since the morning.

Nani had not eaten since … I quickly asked her to give me two roses, leaving the flood of thoughts that threaten to devastate me. The roses were wilted, petals dangling off the stem, threatening to fall off in the heat. She offered blessings by way of gratitude, but I did not wish to hear them.

November 20, 2020

Question three on my fieldwork risk assessment form: “If the topic area of your research is potentially distressing or emotionally challenging, have you considered how you might cope with the emotional impact on yourself and your participants?”

Response: “Some participants may derive catharsis and closure from the exchange, while others may contend with emotional distress …”

At a time when I did not intend on processing my pain, I begin collecting data on that of others. My request for conducting a small number of in-person interviews came through. I started visiting a government-run clinic in Delhi.

Often, participants offered an apologetic disclaimer about not being able to talk “objectively” about their health issues because “this Covid-19 atmosphere has had an impact on everything”. They had missed or deferred doctor’s appointments, ultrasound scans, surgical procedures. They told me about fibroids (abnormal uterine growths) that caused prolonged heavy bleeding, painful breast lumps that are making work impossible and recurring vaginal infections that will have to wait for treatment, in a way that husbands, children and household chores will not.

On a cold winter morning in January, a 59-year-old housewife from Shahpur Jat told me that she obsessively thought about ways to end her life. She had mentioned that her husband died of a heart attack a few months ago. I asked if these thoughts began after that. She replied: “I will not lie … I did not grieve over him. I do not know what happened to me, I just wanted to die somehow.”

She proceeded to tell me about the day he died. They had returned from Pushkar in the afternoon. He went for a bath. They ate lunch together. Napped. He got up and made chai for himself. Then all of a sudden he complained of nervousness.

She detailed how they took him to the All India Institute of Medical Sciences where he was put on a ventilator. I went cold at the sound of that word and remind myself to focus. She described how his oxygen levels peaked to 100 for a bit and the children calmed down a bit. But then he flatlined. I left my body.

“God gives more daughters to the poor,” a young nurse told me. She was explaining how she helped a frail 23-year-old woman deliver her fourth daughter during the lockdown. She studied nursing for 18 months and is now the village “doctor” in my field site in Uttar Pradesh. She said people would call and beg for her help with home births during the lockdown.

People began avoiding government health facilities as much as possible. They feared getting tested or worried that they would be taken away by the police if they tested positive. She did not wear a face mask and I asked her why. She said she stopped wearing it after her mother passed away two months ago. She did not care about anything anymore, she said. The interview questions dried up inside my mouth.

Last week, I walked in on my mother sitting in Nani’s room, sobbing. All of us had occasional dreams about Nani and we tell each other about them. But Nani did not speak in our dreams either. Masi no longer brought up that night as often. But now, every time it came up, there were fewer words and more tears.

April 26

Earlier on the day of Nani’s death, I was watching a Royal Society webinar featuring Stephen Fry and Venki Ramakrishnan. Fry defined science as “humility before the facts”. For me, this does not simply signal the value of evidence per se, but a radical re-examination of what counts as evidence in the first place. And on whose command? Fry insists that: “Science can look at how people believe and why they believe and why they can be pushed into believing things that are untrue and why they find it hard to accept things that they don’t want to be true.”

Global health prides itself as the objective, apolitical, evidence-based domain of eliminating diseases and saving lives. In extending “criticality” (or the need to question all assumptions) to the field of global health, one risks accusations of nitpicking without offering answers. Criticality engages with the historical context of a problem. It pushes against the limits of what counts as evidence and questions who is in command and who has been silenced as a result.

The neurosurgeon and writer Paul Kalanithi said that your relationship with statistics changes when you become a statistic yourself. What happens when the numbers can no longer contain the evidence? Despite being a multi-million dollar, centuries-old enterprise to alleviate suffering and measure impact, global health still finds pain an unquantifiable human experience.

On March 24 2020, a nationwide lockdown was announced in India. Delhi had 30 confirmed cases that day. By May 7, 2021, the city had more than 90,000 active cases and 18,398 deaths. Diagnostic labs are severely short on testing capacity. Hourly notifications are coming in of hospitals running out of oxygen.

Morgues are overflowing as around the clock cremations and burials are becoming insufficient. People are dropping dead on pavements.

Delhi went under lockdown on April 19 with record-breaking daily spikes in infections and deaths. When the prime minister addressed a highly anxious nation on April 20, he spoke for 19 minutes and barely said anything. The government is refusing external assistance. It is also denying public access to data on the severity and patterns of the disease.

It has been observed before that our extensive capacity for language distinguishes humans from other animals. But our pain distinguishes us from language. Not because pain silences words, but because it surpasses them. Our subjective experiences exceed measurability and cannot be generalised. All of the dreadful statistics coming out of India relate to people and to suffering.

In New Delhi today, each individual loss, each burning pyre is an unspeakable, yet screeching horror. It is testing the boundaries of what can be said and what should be said. It is testing the boundaries of evidence.

Vyoma Dhar Sharma is a DPhil candidate in International Development at the University of Oxford.

This article first appeared on The Conversation.