The room is full of people. Here and there I can spot frail sufferers of dengue fever in the company of solicitous family members: it is just after the monsoon, and therefore peak mosquito season. Opposite me is an old man in a wheelchair: his wife speaks on her mobile while his son strokes his hand and speaks reassuringly into his ear. Next to me three Australian women, wearing Indian clothes and jangling with anklets, debate what time they need to arrive at the airport.
An imposing woman enters through the front door and waves at me. She is dressed in a sari and wears large glasses. I have met her only once, at a party. Her name is Aarti. She comes over to me with two young companions whom she introduces loudly.
“This is Amit, whom I told you about,” she says, “and his cousin Shibani.”
We greet each other. Shibani smiles politely; Amit seems ill at ease. I propose that we repair to the hospital café, and we head off in that direction. Aarti chats fluidly to me as we walk past all the people waiting outside consulting rooms. I see an Arab family in pristine robes and think to myself that it is often in hospitals that one realises how many foreigners live in this city. We come to the café, which is a franchise of a well-known chain and which therefore exudes the same nauseating smell as every other café under this name. It comes from the muffins, which they microwave until they are burning hot and serve with a knife and fork.
The TV is on silent, and set to MTV. Everyone orders cappuccinos.
“You all met in this hospital, is that right?” I ask as we sit down.
“We met in the intensive care unit,” says Aarti. “We were there every day, and we shared our stories.”
I would put her in her late fifties. She comes from the city’s propertied Punjabi elite and speaks loudly and with confidence. Amit’s speech is mouse-like in comparison.
“I never thought I would come here again,” he says.
I ask him what happened to his mother but he defers to his cousin.
“He went through such trauma after his mother’s death,” she says, “that he couldn’t work for months. Now he works very hard because he doesn’t like to be in the house anymore.”
She recounts the details. A couple of years ago, Amit’s forty-four-year-old mother began to have difficulty swallowing, and he took her to one of Delhi’s big corporate hospitals. When, after two months of tests, the doctors could not work out what was wrong, they advised him to take her to see the experts at the All-India Institute of Medical Sciences. But there was no room there and the specialists had no time. Half of them were quitting to work for the corporate hospital in which we are now sitting. One of them told Amit to consult him here, which he did. The specialist conducted three days of tests and presented a diagnosis: Amit’s mother was suffering from polymyositis, an inflammatory muscle disease.
Shibani and Amit are in their mid-twenties. Shibani is quiet and serious; she wears a slim-cut salwar kameez. Amit wears a shirt and jeans. While Shibani is talking, he wordlessly shows me a photograph of his mother on his mobile phone. A rotund, smiling woman in a sari.
“That was before all this began,” says Shibani.
She continues her narrative.
“The doctor immediately told us he wanted to give her an injection that would cost 4 lakhs [$8,000]. Amit did not have that money, so he called his uncle to ask if he could borrow it. The doctor told us this would restore his mother’s muscles and there was no alternative, so we had to do it.”
The injection he was proposing was intravenous immunoglobulin, which has been shown to assist recovery from polymyositis. This therapy is still poorly understood, however, and it is unusual to offer it before administering corticosteroids. After administering the injection, the doctor sent Amit’s mother home, giving Amit and Shibani instructions for feeding her with protein powders through a tube in her nose. At home, however, her lungs were filling up with the constant flow of saliva which she could neither swallow nor spit out. Afraid that she might drown, they rushed her back to the same hospital in the middle of the night. There she was given an oxygen mask and diagnosed with pneumonia. The next day, more tests revealed that she also had a kidney infection. She was immediately transferred to the intensive care unit.
The doctor remained calm about all of this. He said,
“I knew this would happen. But if I had told you all the side effects of the immunoglobulin, you wouldn’t have gone ahead with it.”
He put Amit’s mother on renal dialysis. A temporary tube in her arm was replaced by a permanent one in her chest. Then the doctor set about trying to rescue her respiratory system from the saliva flow. He administered another dose of immunoglobulin to strengthen her lungs. Then he performed a tracheostomy and inserted a tube to divert saliva away from the windpipe.
“They said it would only be needed for fifteen days,” says Shibani. “But after fifteen days they said she needed a permanent tube and the one they had put in was only a temporary tube. The permanent tube cost another 75,000 rupees [$1,500].
“We were spending so much money. The day rate for staying in the intensive care unit was 16,000 rupees [$320]. Oxygen and dialysis came to as much as 45,000 rupees per day [$900]. Every night, Amit had to visit relatives all over the city to borrow money. People were giving us cash from their wedding funds.
“You don’t know what to do. When you have the patient lying on the bed, the person who has brought you up, you are so emotional you cannot think. And this is how they get you.
“It was going on for weeks. Every day they would say, ‘Your mother is recovering.’ Our hopes would rise. Then they would say, ‘She is not recovering.’”
We are a quiet group. Shibani’s voice is soft, and we are all gathered around it. Amit looks into his half-drunk coffee as he listens; Aarti’s gaze takes in the hot morning outside, and the manicured garden.
“Meanwhile her blood platelet levels had sunk to critical levels. And her saliva was still not controlled, so that she could no longer even talk, let alone eat. The doctor proposed another drug which would cost 1.7 lakhs [$3,400]. They administered this drug, which was supposed to restore her system and control her saliva flow. It had no effect. The doctors said to us, ‘Of course it is not working. All the medicine is being flushed out of her body by the dialysis.’
“It was hell in there. People were dying at such a rate in the intensive care unit that there was panic all the time, and no one to take care of Amit’s mother. The doctors never came to see her. They had no link at all to their patients. We were not allowed to go into the ward to see her. They never told us anything except, ‘She needs more medicine.’ There was nothing we could do except pay the bills. Every evening we received the bill for the day and we handed over the cash we had borrowed from our family. When you went to the accounts department, you saw massive trunks of 1,000 and 500 rupee notes being carried out to the bank.”