Last week, the New York Times Lens Blog highlighted the work of Misha Friedman, a Moldovan-born photographer who has documented tuberculosis patients in the Former Soviet Union. Friedman questions whether he has done any good for the patients, in the post “Saving Lives or Photographing Them?” “Most of the people you see here are dead,” Friedman tells the interviewer. “My images have not really helped them. Maybe they’ll help people in the future. Maybe they’ll help with fund-raising here and there. But to these particular people, they did not help.”
What Friedman is feeling is the same thing that I have been troubled by—that after two years of anthropological fieldwork which included living at a TB sanatorium [click here to read more about what I am doing in Romania], did I do anything for the patients whose heartbreaking stories I collected? It is easy to say in the abstract that one’s photographs or research will help hypothetical future patients, but what about the person in front of our lens or talking into our voice recorder?
It’s like a collapse. Since I caught this disease, I lost friendships, social circles, acquaintances. They marginalized me, bit by bit. You’re no longer seen with good eyes, no longer welcomed. You’re not in the position of satisfying your needs, because you can’t work for a period of time, especially if you don’t recover to restart your work you slowly crumble as a whole. And you end up alone. – Stefan age 37 a Romanian MDR-TB patient shortly before he died.
We are losers in society. And when you see yourself, the way you are now, and you know what you used to be, when you mattered, and worked… it’s hard for you. This is why we say we are embarrassed, because you don’t matter anymore, to anybody. Mircea 55, dying of XDR-TB.
Mircea’s bright blue eyes well up with tears as he tells me about is life before he contracted tuberculosis in 2005. He is a tall man with large hands who used to be a coal miner. Now, he looks much older than his years and he always looks sad. He hasn’t seen his family in a very long time. No one comes to visit him at this mountaintop Romanian TB sanatorium. Most of all, he wishes he could see his little grandchild. He doesn’t have any pictures, he says it hurts for him to remember those better times. The drugs that Mircea is taking are not going to cure him. XDR-TB or Extensively Drug Resistant TB is resistant to most common treatments. Before I left in August, I took some portraits of Mircea on his bed, and had them printed for him. He didn’t remember the last time someone took his picture. Now at least his family will have something to remember him by. When I return to Romania next month, I don’t expect to find him alive.
Before I left for Romania in 2009, my department chair pulled me aside and gave me some advice. He told me he was worried about me–that as mentally tough as I thought I was, conducting this research was going to be so much harder on me than I thought. He asked me to please take care of myself. At the time, I dismissed what he said. I have always worked with marginalized and sick people, homeless people, sex-workers, crack and heroin users.
I think I realized that I was in over my head when Mr. Popa died. I remember sitting on his bed watching his sunken-in chest moving up and down with each strained breath. He told me he was afraid to go to sleep for fear of dying. I held his hand and could only focus on how cold it was. He died crying, waiting for his son who would never arrive. He wasn’t an old man at 52, like many patients he didn’t even make it to retirement age.
I remember meeting with master’s student who was transcribing some of my interviews and warning her that the content is heartbreaking and that she would have to be able to handle that. To this she asked, “so how are you handling it?” She caught me off guard and I replied with complete honesty, “I’m not handling it well at all. I’m a mess.”
Living at the sanatorium, listening day after day to people who had lost hope I soon began to realize that for many of these patients, there would be no happy ending, no recovery and no beautiful reunion with their family. Many of their families had moved on without them. Their lungs were riddled with holes and in some cases, the medicines simply were not working. They would tell me “yes, TB is curable, but not for me. All too often they were right. They would die even before I was able to get the interviews transcribed. I never told my research assistants when they were transcribing a dead person’s words, but I think sometimes they knew. It always left me wishing I could have done something, for them while they were alive, besides just the gifts of coffee, chocolate, crossword puzzles and an empathetic ear.
At my best, I feel optimistic. I’m glad that people are finally paying attention to the problem of TB in Romania, and I am happy to have become an advocate for this cause. Unfortunately comes at the expense of more scholarly pursuits (such as completing my dissertation after nine years). I don’t know what will ultimately come out of my efforts to help the patients. Since 2011, I have worked in partnership with the US Embassy and the Romanian National TB Control Program on new anti-TB advocacy and education campaign. NGOs have used my photographs and patient stories in their publications and one of my favorite patients is even quoted in a World Health Organization brochure. I’m working with NGOs to develop funding proposals. Lately, I have been writing things to inform and influence (hopefully) policy. The worst part though, is I’m haunted by the ghosts of dead patients who wanted me to give them a voice. I still have nightmares about them, but not as many as I used to. When I returned to America, a colleague told me that my “fieldwork had traumatized me and I need to come to terms with that.” I had never thought of it that way. As difficult as this research was for me, it does not compare to what the patients are going through. Now that I have at least a partial understanding of what they are going through, all I can think of is how to improve their situation improved. How can I help to reduce the suffering and death that this curable bacterial disease causes? I know these are activist and advocate questions and many will say my objectivity has been compromised, but at the end of the day, objectively documenting suffering does not feel like enough.