Lives That Matter a Little More
The following reflections were written by a member of the research team at the Schizophrenia Research Foundation (SCARF) in Tamil Nadu, India. For more information about the INTREPID programme, please visit our MHIN innovation page.
Lives That Matter a Little More
~ Abirami, Research Assistant, INTREPID - II
The world was fresh out of the COVID lockdown when I began my first field journey with INTREPID. People were still struggling to grasp their old normalcy and lives were uncertain. It was my first job and I was both anxious and thrilled. All the training I received at the centre could not fully prepare me for the reality of the challenges that many recruited in the study face.
My first visit was to a man in his sixties who had experienced schizophrenia for over 30 years of his life. When I arrived, he was working at his wealthy landlady’s house - collecting and heaping fresh cow dung to prepare manure. He wore a faded white dhoti, dirtied from the hard work he needed to do for a livelihood. The landlady told us about how she offers him food in exchange for errands that he runs for her. She went further and told us a little about the man, “He used to be a wealthy man. He was the first to be educated with a dual degree in his family. He lost everything to his insanity. He sleeps in the nearby temple. Does not bathe, talks to himself, always lost in his world. I always call him for some work and keep him occupied. It pains my heart to see someone go to ruins in their old age. That’s why we should take good care of our mind ...” She sighed.
I realised no amount of training could have prepared me for the raw stories my participants narrated. While I grew up as a city girl my father had grown up in a remote village that we periodically visited and I thought I knew everything about the strikingly different lives of villagers. It was an eye-opening experience for me to see what happens when a person has an illness like schizophrenia - a disorder that is especially challenging to manage when living in a remote village.
With a lot to think about, we travelled an hour to get to the next person, a woman in her fifties who we were scheduled to meet that day. My field coordinator stopped the car in front of what I could best call the remains of what once was a house. The woman, frail almost to the point of vanishing into thin air, sat there talking strenuously to herself. While I tried striking up a conversation with her, three other women emerged from a little house with a thatch roof just nearby which seemed too small to accommodate all of them. They introduced themselves as the woman’s sisters. And soon they began to tell us about the woman. Some of this related to the impacts on the family: It went from how she doesn’t help around the house; to how she is unable to care for herself; and how the family has lost hope. But they also empathised, seeing how traumatic past experiences had affected their sister. They became tearful at the end and lamented “She used to take care of all of us. She became like this because of her drunkard husband. He hit her so much. We are unable to leave our sister and get on with our lives knowing she is like this.”
After, one of the sisters took me to the other side of this thatched house to show me a huge pile of empty liquor bottles that heaped up to the roof. “Do you see this? She has collected all these bottles from around the village and saved them here. She has no use for this. She simply does this while she wanders. Everyone around the village looks down on us. And on the other hand, her husband takes all these bottles to the recycling factory and uses that money to drink more: “Her husband now is the biggest drunkard of all the drunks of this village.”
My heavy first field day came to an end. Going back home in the public bus, I couldn’t help but reflect on the difference that social position makes. If I were to develop a mental illness, I feel privileged enough to demand and receive care for the illness and be treated with dignity. But I couldn’t say the same for the people I’d met. That day, I saw and learned more about the pain and destruction an illnesses like schizophrenia causes than about symptoms. I was fully charged and motivated to make changes in this world and I wanted to do everything to help them. So, if the research that I am part of would make even a little dent and improve the lives of people who face the challenges of mental illness then I would have played my part, because these were lives that mattered a little more.