"When you take the medicine for multi-drug resistant tuberculosis (MDR-TB), it's a fight every day. The treatment can consume you," says Zakir, a 28-year-old MDR TB survivor, sitting in a small room in his village in Howrah.
I am sitting in Zakir's home, recording his story for my new book on TB survivors, supported by the Lilly MDR TB Partnership. A long journey and much persuasion have brought us here.
Zakir looks up at the almost collapsing roof of his room to recall dates and years. Beside him are two large files filled with prescriptions and test results. He leafs through them and holds them up to confirm dates. On the wall are four drawings by his niece from a year ago, with wishes for an early recovery. Meanwhile, his brother, also a TB survivor, leans by the doorway and intermittently corrects him.
I continued to feel a pain in my chest but the doctor insisted I was cured. When I protested, I was told, 'You don't know more than the doctor.'
Zakir was 17 when he started coughing. He was in Delhi, working as an embroiderer after running away from home. He lived and worked with 25 other embroiderers in a single room in the Kotla Mubarkpur area.
Zakir's story is the story of thousands of migrants in India's urban cities. With crowded living and working conditions, as well as poor nutrition, TB creeps up on them and often remains undetected. Zakir's journey was no different. He first went to a private doctor in Delhi for treatment but cannot recall what medicine he was given. "Cough drops possibly," he says, unsure. It's difficult to confirm whether the doctor in the large urban slum was even qualified. They are usually not.
Eventually, Zakir's deteriorating health, inability to work and growing medical bills brought him back home. The cough persisted, despite months of treatment by a local doctor. Yet, in all these months, TB was never suspected.
Zakir's brother-in-law took him to a doctor who previously worked for the government. This was on the insistence of his eldest sister, who is deeply attached to him. He was the first to ask Zakir to get a TB test. The test was positive and Zakir started category one medicines for drug-sensitive TB. "We didn't even know about TB, how could we have guessed what kind it was?" his brother says referring to the multi-drug resistant (MDR) TB diagnosis later.
No one asks us what we will eat. But they all tell us to eat the medicine on time...
Initially, Zakir bought his own medicine, but the doctor introduced him to a Christian non-profit which administered the government's free DOTS treatment. In 2011, after six months of treatment, Zakir was told he was cured. "I continued to feel a pain in my chest but the doctor insisted I was cured. When I protested, I was told, 'You don't know more than the doctor,'" he recalls.
A few months later, he started coughing blood. He panicked and went back to the non-profit, where he was restarted on category one drugs. They classified his case as a relapse when it was actually a failure.
With no improvement in his condition, he was put on category two drugs. "He was always a failure case but we didn't have treatment for drug-resistant TB available here then," says his counsellor, a motherly lady who Zakir trusts completely. With Zakir's worsening condition, it became obvious that category two drugs had also failed. Eventually, he was sent to a Kolkata hospital for tests and treatment. His sample went to Bangalore to be tested for drug-resistant TB . The results confirmed that Zakir had MDR-TB.
Zakir's has 10 siblings -- five brothers and five sisters. After his mother's death, his father remarried, as Zakir, the youngest, was still a child. He was deeply attached to his stepmother, who brought him up as her own. This was a source of conflict with his elder brothers. Their constant misbehaviour towards him and his stepmother's children made him run away to Delhi.
Sometimes I could not move my arms, the pain was excruciating. Yet, if you want to live you must do it [have the medication].
After Zakir's TB diagnosis, his brothers started harassing him. They refused to give him a room in the family home. Zakir slept in the yard adjoining the family's hut. All except one brother severed ties with him. This, however, didn't affect Zakir. He was determined to be cured.
His two elder sisters supported him financially through his illness and do so even today. Although medicine was free, he needed money for travel to the DOTS centre and food. "No one asks us what we will eat. But they all tell us to eat the medicine on time," he says bluntly. This is true of thousands of TB patients in India, who often live in extreme poverty and are unable to afford the nutrition the treatment demands.
In 2012, Zakir was put on treatment for drug-resistant TB through the government's DOTS Plus program. He was later also admitted to the TB hospital in Jadavpur for eight months because of extreme side effects. "The doctor sent me home, saying I had a better chance of survival if I got out of the hospital. Every other day, someone would either die or kill themselves," he recalls.
The hardest thing for Zakir was to consume the medicine. "It was a daily battle to eat something which gives you such torturous side effects. Sometimes I could not move my arms, the pain was excruciating. Yet, if you want to live you must do it," he says. Zakir would also often lose his temper. "It's the medicine -- it drives you crazy "he says. Zakir is particularly grateful to the doctor at Jadavpur. "His counsel gave me the will to fight it," he says, his hands shaking -- a common after-effect of MDR TB treatment.
Someone helped me and I came back from the dead. I have to help others...
In July 2014, Zakir was told he was TB free. He remains extremely thin with barely any muscle. His brothers refuse to help him financially even today. His sister's income is also not enough. Recently, he approached the village panchayat but they turned him away, despite a magistrate's order. "They say they have no funds to help patients," he says angrily.
Nevertheless, Zakir is determined to build a new life. He has trained as a tailor and wants to start a small tailoring unit or a poultry farm. "Something not too hard. I still get exhausted quickly," he says. Yet, these businesses require seed capital. His younger step-sister and brother continue to take care of him. He hopes he will be able to work soon and support them. He also wants to help other TB patients. Recently, he counselled a TB patient in his village about the importance of adherence to medicines. "Someone helped me and I came back from the dead. I have to help others," he tells me as we walk down the dusty village road back to the car. He waves us goodbye, beaming, hopeful and grateful to be alive -- a feeling we take easily for granted.