Lily Bonadonna, 2014 Wallenberg Fellow, Writes a Letter to Future Wallenberg Fellows
The night before I arrived in Peru, August 8, 2014, I was quieter than usual. I am quiet when I feel scared or nervous. The last time I had been in the country, I was ten years old and then I had my mother to show me around and to speak Spanish for me when I needed it. This was her country; where she grew up, and now I wanted to make it my own, too. I was alone though, August 9, when I arrived and I had plans to work as an anthropologist and research tuberculosis in Lima, the capital. It is a city of 10 million people, ten times the size of any place I had ever lived.
I spent my first three weeks designing my research. I was collaborating with Peru’s National Institute of Health and I started following one of the nurses who worked there. He took me to some health posts and introduced me to patients. He showed me how to move in the city and in the sometimes two hour bus rides we had sitting in traffic, he taught me about the health care system, the inequality, and the reasons why there is so much TB here.
When I finished writing my research protocol, I submitted it for ethical approval and I thought I would be able to start my own work in two months, at the most. This was one of the most naïve moments of my life. I was working with the state; and, in the state, bureaucracy rules. Finding the right people to put the right stamps on the right papers was incredibly difficult. In the NIH group I had initiated collaboration, I was also by far the youngest, one of the very few women, the only non-Peruvian born, and the only person wanting to conduct social science research. I was different, and of course it was intimidating.
Research approval did not come in two months. It came in seven.
So what did I do in all this time I had to wait? I became friends with a community health worker, a transgender woman who delivered TB medications to people’s homes, and she showed me her life. I learned there are people living in collapsing buildings in the center of Lima. There are people consuming cheap cocaine on streets three blocks away from a rehabilitation center. There are nights when power completely dies with no warning and on these nights, neighbors must be especially careful. Though still, there are community organizations with good people trying to improve education, find jobs for the unemployed, and reduce crime. It has taken a long time, however, and it will take a long time more.
This community health worker introduced me to several other people working in the municipality of Lima. I started going to some TB-related talks and I pushed myself to meet the various speakers and panelists until I found someone who was willing to make a phone call for me. He had friends. He pushed my project through the approval process. And then I started. It was April at this point.
My research was designed in three parts – interviews with TB patients, home visits with their family members, and focus groups with health personnel. The overall objective was to understand diagnostic delay: why do people with symptoms of tuberculosis wait to seek professional medical attention and why does it often take so long to get them in treatment? Health posts give out free pills, but patients must physically swallow them in-clinic 3 or 6 days a week, depending on their treatment scheme. For five months I spent my Mondays through Saturdays in-clinic asking patients if they would like to spend a little bit of time with me.
In Lima, public transport works by word of mouth. There is no bus map; there is no way to look up how to get somewhere. I went to health posts in 19 districts of the city. The neighborhoods ranged from shantytowns, people living in sand on the city outskirts, to historical blocks where once-palaces are now cracked, cemented apartments. I went to the majority of these places alone, without an exact idea of how to get there. It was scary sometimes – the streets, if they are paved, are mostly greasy and black. There are scabbed and diseased dogs running around. Falling brick, falling houses dragging to the top of the city’s hills. At times, I would pick up unwanted male attention and I would just keep walking forward as if I had not heard or felt anything. This fear that I had though, a little bit almost every day, made me want to see more, made me want to understand how things got this way and how people thought of their own neighborhoods; their own lives so different from mine.
I spent time with 114 patients in total. They let me into their lives. They let me sit with them in their homes and listen. One woman told me about her son who had extremely drug resistant tuberculosis and who had come and gone from treatment. Her neighbors stopped visiting the house for fear of contact. She was blamed for not feeding her child properly, thereby, lowering his immune defenses and making his body susceptible to tuberculosis. This woman cried as she told me about the night her son couldn’t stop coughing blood. He was sick. He was so sick that he lay in his bed and he died there that night and left behind the infectious bacilli in his lungs to infect his younger brother. She called an ambulance for her boy, but nobody came.
On another day, I climbed up a very creaky ladder to visit a 24-year old girl was who was co-infected with HIV and tuberculosis. She was staying in a makeshift attic in her grandmother’s house because her in-laws, with whom she was previously living, had told her to leave. She was contagious. I sat there and I talked to this young woman, just two years older than me at the time, and I heard her lungs crackle. There were no windows in this room. It was muggy. She was sweating. There was no running water in the house. I asked her if she felt embarrassed for having tuberculosis and she looked at me and said very plainly, “No, why? The whole word is sick.”
I’ve been thinking about this comment for the last several months. There are many sick people in Lima. When I would come home from interviewing, especially at the beginning of my research, I would feel this incredible pressure in my chest. I have never been one to cry, but I started crying here in Peru. I started to feel a little helpless – if there is a world of sickness, and not just disease, but sickness for letting preventable disease spread so fluidly, then how could my little work here be of use, really? Did I fall into poverty tourism? Was this just to satisfy my own curiosity? These were some hard questions to ask and although I never really came to a solution, I became a little calmer with myself. At the very minimum, my work was not causing harm, and if I published my research results, I could contribute some very small knowledge. Even if it was never applied anywhere or to anything, at least the knowledge could exist.
I write now to future Wallenberg Fellows and to students who are thinking about applying for this fellowship. This year is a gift. There are not many students who are able to do and to learn exactly what they want to the year following college graduation. If you apply to this scholarship, then do so with dedication. Tell yourself that you will do this work because experiences such as these are what build passion, drive, love – all of the best things. And if you do not win, find a way to run your project, if even just a small part of it. People like to help excited students learn. Be that student and use this time to explore that which moves you.
I have my flight booked back home and as I prepare myself to return to Michigan for the first time in almost a year and a half, I have to remember where this began. It is because of Raoul Wallenberg that I am here. He saved thousands of lives and his example has transcended his death. He still gives opportunity. This has been the most formative year of my life. I will go home soon and again, I find myself quiet. I am nervous now not because I am flying to a country I have never really lived in to do something I have never really done. I am nervous because I am returning to a place that does not hold the same reality that I have glimpsed and where I have grown so much.