Medical narratives

AT THE last International Book Fair I bought a copy of Romulo Baquiran’s “Sagad sa Buto: Hospital Diary at Iba Pang Sanaysay” from the University of Santo Tomas Press.

The book is about Baquiran’s having an accident, resulting in his confinement at the Philippine General Hospital for treatment of a fractured foot, an X-ray plate of which was used for the cover. I’m not sure if it was actually his foot, but the point is well-made: a need to write about the consequences of the fracture. It has a mix of the funny and the serious, and is not about Baquiran alone but about hospital staff and people in general.

“Perfect,” I thought, because I’ve been lecturing to my medical anthropology students on medical narratives as a research tool.

“Narratives” is a fancy term for stories or kuwento-kuwento. (I love the way Cebuanos will invite you to talk, istorya-istorya.) The concept of narratives comes from the humanities, particularly literature, referring to accounts with a beginning and an end and a plot. Children’s stories, for example, have a start, “A long, long time ago” (or “Noong unang panahon” in Filipino), with an unfolding plot and an ending, “and they lived happily ever after” or a hero’s triumph.

As a medical anthropologist, I have seen the rise of “medical narratives” through the years; it is now a respectable part of scientific research. Here, stories are collected from patients, health professionals or caregivers (including family members) narrating encounters with health and disease.

I can tell you they often sound like epic tales complete with heroes and heroines and an assortment of villains. The latter can be, conventionally, germs, but, in the Philippine context, can include people, the ones (relatives usually) blamed for causing your “high blood,” or the inhuman doctors or hospital staff, or even the supernatural, from the dwende to the aswang. And let’s not forget the mangkukulam, or humans with superhuman powers.

Diagnostic, therapeutic

The medical narratives are appreciated because they become diagnostic tools that go beyond the question “How are you feeling?” Medical narratives are more elaborate, giving the ups and downs in a patient’s condition, especially important for chronic or long-term illnesses. I encourage my mother’s caregivers to note down more than blood pressure and temperature readings in their logbooks, so I can get a fuller picture of how she’s faring. My mother’s geriatrician is often amazed by the narratives I share with her because she gets insights to plan—sometimes even to change or withdraw—the treatment.

Medical narratives are now receiving more recognition as part of evidence-based medicine, allowing us to go beyond numbers, to capture the whole range of physical, as well as psychological, changes in the quality of life, no matter how small—for example, episodes of clear thinking in patients with advanced Alzheimer’s, or first responses to stimuli from a child with autism.

The narratives, too, have been found to have as much therapeutic potential for the patients telling their stories and for the healthcare providers and carers, as those little signs of improvement.

Medical research now includes collecting narratives from those providing healthcare—important as early alerts to problems of physical as well as mental fatigue. My mother’s geriatrician told me about one study she conducted using narratives, where the doctor found that the “worst” caregivers were relatives forced into their roles. This is almost always a woman—a daughter-in-law, for example—who is asked to give up her work, sometimes even her family, to care for the mother-in-law. She will do what needs to be done out of a sense of duty, but there may also be resentment and frustration, and “compassion fatigue” may set in early.

I do warn my students to be careful with the narratives, which are very subjective and often filled with inconsistencies. The illness itself can affect the narratives because of lapses in memory, as well as the roller-coaster of emotional and physical changes. There may be shame, too, at having particular diseases like tuberculosis, HIV/AIDS, or even cancer, which is revealing because it shows that people still think they are being punished by God through illnesses.

Nevertheless, the narratives remain important because they convey perceptions that can go beyond survival rates, revealing the pathos, as well as the many miracles, around health and disease.

Many books have come out of illness narratives. The late neurologist Oliver Sacks, who I wrote about recently, produced several books out of what he called “clinical tales,” allowing the world to better understand neurological disorders.

200,000 blinks

Perhaps the most dramatic of medical narratives from a patient’s point of view is French journalist Jean-Dominique Bauby’s “Le Scaphandre et el Papillon,” which has been translated into several languages including the English “The Diving Bell and the Butterfly.”

Bauby suffered a massive stroke that resulted in what is called the locked-in syndrome, his whole body paralyzed except for parts of his head and his left eye, which he used to “type” out his novel by blinking. An assistant would ask him what letter from the alphabet he wanted to use, going from A to Z, and he would blink when the correct letter was mentioned. It took some 200,000 blinks to write the novel, which is about his stay in the hospital, as well as his memories of happier times. Bauby died two days after the book was published, and 10 years later, the book was made into a film.

In the Philippines, I’ve recommended to my students Baquiran’s book, as well as the late columnist Billy Esposo’s “The Chair Wrecker,” which is about his battle with chronic kidney disease. From the viewpoint of providers, Ting Tiongco’s “Surgeons Do Not Cry” from the UP Press is now a local classic. It’s not always about direct encounters with illnesses. There’s also Anvil’s “Fallen Cradle,” with contributions from parents who lost a child. (I hope this has not gone out of print.)

I suspect Filipinos are not as willing to write about their illnesses, but if you do have a penchant for istorya-istorya, do think of keeping a diary, with or without the intention to write a book. Think of the writing as therapeutic, and as a contribution to medical science. It’s all right to write about the down times, but write as well about the miracles of the body’s resilience, and the heroism of patients and healthcare providers. More than the medical, these narratives can be testaments to the human spirit, which may have been the reason Bauby was willing to go through tremendous difficulties for his narrative.