Saving Lives or just Documenting Suffering?

© Jonathan Stillo - Stefan reflected in a mirror staring off the balcony. He would do this for hours when he especially missed his wife and 13 year old son. He died a few months later at the age of 37.

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.

© Jonathan Stillo- The long hall leading to Mircea's room. Many of the patients are too ill to reach the staircase at the end.

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.

© Jonathan Stillo "The Last Garden of Mr. Popa" published in "Tuberculosis: Voices in the Fight Against the European Epidemic" by the TB Europe Coalition and Results.UK

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.

© Jonathan Stillo- One lung X-ray. A now deceased patient was momentarily entertained when I told him a tree had grown where his lung once was.

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.

Comments

  1. This post definitely reveals my ignorance about TB…I have read that there are certain risk factors for developing the disease rather than just a latent infection. I wonder what is it that made these patients come to the sanatorium–does it promise better treatment than most, is it the only option in their family’s $$$ bracket? I’m not sure I understand what the patient means by saying it’s curable but not for him…is that because the disease is too far along, or the right antibiotics aren’t available there? What are the main policy changes that you and others are arguing for, and to what extent are they Romania-specific? Well, I guess maybe you should just pass me your dissertation. :)

    About the trauma part…well, what really could you do? I understand your guilt, though…isn’t there some kind of term for being guilty for witnessing suffering? No one is superman, but I do think you are doing what you promised, that is, by testifying you’re giving the sufferers voices. So thanks for that.

  2. Jonathan Stillo says:

    Thanks for the comments Sarah. TB is a very complicated disease. It is called a “social disease” because so many social and economic factors influence both ones chances of developing active infection and their ability to become cured. Even though treatment is free in Romania (though there are chronic shortages of the medicines used to fight drug resistant forms (MDR, XDR)) it takes 6 months to two years (this is the same in every country). Most patients cannot afford to take that much time off from working so they end up stopping treatment and relapsing. When a patient gets to be like Mircea who has relapsed many times since 2005 and who is resistant to most drugs, he really has no hope. He is very contagious though, so there are not many options for him. Anyone he infects will catch his very resistant strain of the disease so this is a real public health danger.

    Patients who are treated in sanatoria are generally those who need additional time and support (they can be hospitalized longer there). They tend to be poor or working class, but in Romania because the TB rate is so high, people are exposed to TB in the course of their daily lives. I have met doctors, lawyers, business people, journalists and even an Olympic athlete who have had it.

    Here is a link to a research report I wrote earlier this month . It is geared towards policy makers.
    http://www.irex.org/resource/all-my-problems-started-TB-ethnographic-analysis-treatment-failure-romania-research-brief

    Some of the problems I talk about are Romania-specific, but most are not. There is a general lack of funding for TB control and actually for health care in general. Romania spends less than 4% of GDP on health care which is by far the lowest in the region and even below the global average of 6.1% . To make matters worse, the disease is seen as shameful to have so there is little advocacy about it. People are afraid that they will be fired from their jobs or ostracized in their communities. They are right to be afraid, I mentioned that my research is about TB and a prospective landlord refused to rent to me.

    As far as making a difference, I’m really trying, but it is just frustrating that so many of these patients won’t live to see any improvements. I remain optimistic, there are a lot of great people who are caring for these patients and trying to secure additional funds for patient support. Hopefully, my research will give them a louder voice to help patients and their families.

  3. Martha Lincoln says:

    Jonathan, I would like to thank you for putting this out. I know it represents just a fragment of the enormous amount of thought and material that you have drawn from your research experiences, and you have crystallized it very clearly here.

    I want to encourage you to continue doing everything that you are doing, to connect with other researchers who have collected the testimonies of sufferers of structural and other forms of violence, and to consider thinking of your acts of witnessing as a form of resisting trauma and helping survivors cope. Our apical ancestor Arthur Kleinman is big on this, and I often think of that story of his about the young burn victim to whose suffering he bore witness while they were debriding her wounds. It made her scream with pain to have it done. But when he listened to her explaining how she was surviving it, he saw that her pain had subtly become more manageable and she had gained a measure of control over a terrifying experience.

    Take care of yourself & know that your work really matters. Being your colleague continues to give me encouragement, to challenge my sensibilities, and to motivate me to look for anthropological strategies for lessening social suffering.
    Martha

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