Henry’s severe illness and his difficulties accessing treatment prompted Green to contemplate the horrifying statistics of tuberculosis and the paradox of our extensive knowledge about it. More than one million people still die every year from this ancient disease; yet the bacterial cause was elucidated a century and a half ago, and effective treatments have been around since the 1950s. Barring eradication, the germs mutate and become resistant. Given dire living conditions, it spreads. Effective therapy can be prohibitively expensive. “The cure is where the disease is not, and the disease is where the cure is not” (p. 5). People die where cures cannot be obtained. 

History is woven though Henry’s story, but so are politics, culture, and economics: the discoveries, the 19^th-century romanticization of ‘wasting away,’ the hard realities of pharmaceutical development and delivery. Henry has survived, become healthy and an inveterate TikToker and youtuber. He even has an episode on the power of storytelling. But other people that we encounter through this tale have died. 

We still have tuberculosis because statistics de-personify it, and geography allows ignoring it. Green uses Henry’s story to invite us to ‘[t]hink about how rare and precious humans are, and how many of them you get to worry for and care about. Then if you can, find a way to multiply that 1,250,000 times’ (p. 189).  

The book flows easily in language that is clear and accessible, a tribute to Green’s experience in writing young-adult fiction. In the end, without denying the benefits of medical interventions, he calls for a focus on the real cause of tuberculosis: injustice—tolerated and unchallenged. ‘Ultimately,’ he writes, ‘we are the cause’ (p. 184).  

Everything is Tuberculosis: The History and Persistence of Our Deadliest Infection
John Green
New York: Penguin/Crash Course Books
2025
ISBN 9780525556572 

Web image created by Medhum.org

Esther, daughter of a native healer who has some familiarity with and respect for Western medicine, envies and longs for Antonia’s Western training and attaches herself to her as a disciple. In her encounters with patients, Esther finds that she has an inexplicable gift for healing which baffles her as well as Antonia and complicates their already tenuous relationship. Esther’s gift forces Antonia to reexamine some of her most basic assumptions about what constitutes healing. 

The novel raises complex questions about the cultural, religious, and institutional contexts of medicine in a delicately drawn portrayal of relationships among characters whose divergent frames of reference complicate trust and understanding. One of the questions the novel addresses is not only how to heal the body, but how to heal the breach between cultures. In the development of the friendship between the American doctor and the African healer these questions are worked out in concrete particulars that fully honor both the pain and the hope involved in authentic cross-cultural dialogue. 

Antonia Saw the Oryx First
Maria Thomas 
Soho Press, New York 2007: 296 pages 

A previous version of this review was published in the NYU Literature, Arts, and Medicine Database.  
Web image by medhum.org.

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This is my third trip to Naggalama.

In the summer of 2016, I flew to Entebbe with the doctors to direct a documentary about the US-Ugandan palliative care team. I wanted to explore how the Americans fared in a place lacking the diagnostic tools and tests they depend on in the US, and whether people in the villages, many of whom rely on traditional healers, were receptive to their care. 

Access to healthcare remains a major problem in these areas. The people visited by the team are often in the advanced stages of their disease and need the liquid morphine provided by the government to ease their pain and suffering. Many of the villagers we visited had no idea of their diagnosis and what they could expect as their condition progressed.  

With the footage from earlier trips, we created a video about cancer and what to expect when diagnosed. The video will be shown on mobile phones by Village Health workers to the people they visit in their districts. The purpose of this trip was to produce translated versions of the program.    

There are more than 40 languages spoken in Uganda. English, an official language of the country, and Luganda are the most widely spoken, but to reach a broader audience, including the rural population, we had to produce other versions. On this trip, we spent a week in Kampala at Stone Age Pictures filming in Kiswahili, French, sign language and Luo, a language mostly spoken in northern Uganda. The plan is to record more versions once these are successfully piloted.

Ali Musoke is the head of Stone Age Pictures in Kampala and was the Director of Photography on my documentary film, Oli Otya? Life & Lost in Rural Uganda, in 2017. Travel to and from Stone Age from our guest house averaged 20 minutes door to door. We drove alongside women and men carrying all sorts of items balanced on their heads even an open suitcase displaying pieces of jewelry.   We passed roadside markets and goats nibbling grass on the side of the road. Traffic was heavier than I remember with government and army vehicles speeding down the middle of the road. Public transportation is either by boda boda motorcycles or buses, really no bigger than vans, that stop along the roads to pick up and drop off passengers. There were so many boda bodas to dodge,  at times I felt I was an avatar in a video game, dodging incoming traffic.   

Ali, his crew and I worked in the studio for six days. Together we directed and edited the new versions. To avoid having to re-edit the video for each language, on-camera actors- two nurses and three professional actors- had to read to time while watching the finely cut scenes in the video. For example, in the section about how cancer is diagnosed, we show techs examining scans then processing a blood sample, The translations of the scripts were handled by a professional translation service in Kampala. Because the translated versions were uniformly longer than the English one, we had the translators on the set to make any last-minute adjustments to the text and to ensure that the reading was accurate. Cultural differences quickly surfaced. For example, biopsy is not a commonly used word, and it was necessary to use a description of the procedure. Similarly, the phrase “palliative care” is not widely known, and not simple to translate. We used the English phrase but showed the team in the field talking to a patient and delivering medicine. Images played a key role throughout the video. For the sign language version, we split the screen evenly between the program and the accompanying signing so that people viewing the video on their mobile phones would be able to see the woman signing. 

Once we finished the studio work, we set out for Naggalama to meet up with the team at St. Francis hospital and head out to the villages to visit women who have breast cancer. The next project is a video to help destigmatize a breast cancer diagnosis.

As I drove with my crew along the red dirt, rough, and deeply rutted roads to the women’s homes, I couldn’t imagine how women in this area could cope with breast cancer, that is if they were able to be evaluated once they suspected they had an abnormality. Village Health Workers play a key role in connecting women to health centers. But evaluation and treatment is costly and require many trips to the Uganda Cancer Center in Kampala, a trip that can take two hours or more.   

In this area, many people rely on traditional healers. Szozzi, our soundperson, grew up in one of the villages we drove through, and we stopped to say a quick hello to his family. He told me that the healers have a placebo effect, using talk to soothe their patients even when the herbs they offer have little effect on their physical illness. Sometimes, Szozzi said, people lack the language to express how they feel at vulnerable points in their lives. How a question is asked can make all the difference. And sometimes, they believe that by giving voice to what they feel can make the illness worse.

On this morning in Naggalama, we pack our bags and prepare for the trip in the hospital van to the Entebbe airport. The doctors and I take a final walk around the hospital grounds. Much is unchanged since my last visit. The hospital now offers CAT scans, and there is a new building with private rooms.  We drop in on the maternity ward to say goodbye to Immy, a nurse and the spiritual leader of the palliative care team, who is caring for her new granddaughter born at the hospital the day we arrived.  

I leave with mixed feelings, overwhelmed by the needs of the population and grateful for the dedication of the health care workers. I will miss you, Naggalama.

For readers interested in the art of translation, I recommend Is That a Fish in Your Ear, Translation and the Meaning of Everything by David Bellos