Author in Focus: Karen Thornber on what narratives teach us about the way we look at illness and healing

"Prejudicial attitudes and discriminatory behaviors surrounding certain diseases cause even greater anguish than the physical symptoms of these diseases themselves. We are already seeing this with COVID-19, in China, Italy, and other parts of the world."

For this installment of our Author in Focus series, we had the pleasure of hearing from Karen Thornber, author of the recently published Global Healing.

Thank you so much for taking the time to answer some questions about you, your work, and the publication of your most recent book.

My pleasure!

You express the importance of literature on the understanding how illness affects communities. How do you find the current narratives of healing, public healthcare, and general well-being in the United States compared to the rest of the world?

As is true of many nations, there are a range of narratives in the United States on disease, illness, healthcare, healing, and general wellbeing. The last two decades in particular have seen an outpouring of patient, family, and physician memoirs, in addition to fiction, drama, and poetry, that engage with a variety of health conditions and speak both implicitly and explicitly about health and healing. At the same time, there are many health conditions about which people still do not feel comfortable writing. As physician-writer Suzanne Koven noted recently, cancer, neurological conditions, and psychological conditions are the most common subjects of illness narratives, while congestive heart failure, despite its worse prognosis, and inflammatory bowel disease, which “threatens life as well as its sufferer’s sense of self and sexuality, has never found its way into a great memoir” (“Poor Historians,” 2016).

What do you make of the disconnect between the emotive aspects of medical care and the healthcare system promoted by the USA? What about the ideas of Medicare for all? Would you gander the sense of care being a readily available human-right give a sort of emotional ease to citizens with chronic illness?

I do believe that access to quality healthcare is a human right, regardless of one’s socioeconomic or employment status. This includes access to quality care for both acute and chronic conditions, as well as for mental illness. Without question, better access to better care would ease the toll of chronic illness.

When I read your descriptive line “Global Healing reveals how individually and together works of literature underscore the urgency of transforming how we treat ourselves, one another, and the planet,” I get a sense of us “lagging-behind.” In a way, do you feel like our practices have a lot of catching up to do with our literature?

I think it’s more that our practices have catching up to do with our aspirations and ideals, many of which are expressed in literature. Literature, and narratives/writing more generally, provide distinctive perspectives on disease and illness, as well as on healing and wellbeing, that can disrupt and even shatter assumptions and change consciousness concerning how illness is and could be better treated in societies, in healthcare settings, and among loved ones.

Forgive me for being unable to resist the most topical conversation point; you mention in the introduction of the book that “According to the WHO, an influenza pandemic remains a distinct possibility despite the increased availability of flu vaccines.” What are your thoughts about the global response to the COVID-19 outbreak?

As of this interview (March 9, 2020), so much is still unknown about the 2019 novel coronavirus that it is impossible to predict just how damaging it will turn out be in terms of lives lost, whether from COVID-19 or from another health condition for which patients can no longer get treatment, particularly among already vulnerable populations. We also do not know the ultimate consequences of losses of wages, employment, finances, and other opportunities, again particularly among already vulnerable populations. Official responses vary between two extremes: downplaying the risk of the disease and reassuring uneasy populations that there is nothing to fear on the one hand and on the other hand closing schools and other places where large numbers of people gather, and implementing travel bans and mandatory quarantines of millions of people.

Part 1 of Global Healing – “Shattering Stigmas” – speaks to how the prejudicial attitudes and discriminatory behaviors surrounding certain diseases cause even greater anguish than the physical symptoms of these diseases themselves. We are already seeing this with COVID-19, in China, Italy, and other parts of the world, where individuals who have had the disease or who are from places with high rates of COVID-19 are facing a strong backlash.

I had the pleasure of reading your chapter, “Medically Treating, Not Healing.” Even the chapter title itself is thought provoking. What do you make of the general neglect towards the emotive aspect of healing in our culture?

Much healthcare is focused on treating immediate symptoms and addressing short-term needs. For many patients, this approach is sufficient. But when symptoms and needs result from chronic conditions (e.g., recognized chronic diseases, conditions that are persistent), or from serious and/or stigmatized diseases, more attention needs to be paid to healing, that is to say, to enabling physical and mental wellbeing. Our neglect of wellbeing has had serious – and frequently preventable – economic, health, mental, and social consequences.

Can the “structural violence and the stigmas” of our health systems be combatted by an individual? You stress the importance of emotional support in relationships—has your own work made you reflect on how you care for your loved ones?

Structural violence and stigmas can be tackled by individuals, but they are more effectively combatted by communities and societies working together to dismantle and debunk them at every level. My experience with loved ones with serious illness has revealed much of what “works” within the healthcare system as well as more serious lacunae. One of the most important lessons of my research is the importance of moderating assumptions within families, communities, and societies regarding the “right” ways to live and die and not to impose our own expectations on others.

Thank you once again for answering these questions. Do you have anything further you would like to mention, whether about the final product of the book or the process of research and writing?

As often happens, Global Healing began as a very different project; it initially was focused on narratives of world literature from East, South, and Southeast Asia, with much less attention to literatures from Africa, the Americas, Europe, the Middle East, and Oceania. This changed significantly the deeper I got into the research and writing of the book. So too did the topics covered in the book. Moreover, the research and writing of Global Healing were interspersed with many other academic projects, including publishing a co-edited volume on Global Indigeneities and the Environment and a series of articles on various aspects of world literature, which gave me important insights into the best way to frame Global Healing.

One of the great pleasures but also great challenges of writing Global Healing was responsibly integrating literatures from so many different parts of the globe (from all the world’s continents save for Antarctica) and in so many different languages, from Afrikaans to Yiddish. Illness occurs most immediately within local systems, and throughout the book I address the specific national, cultural, literary, and medical contexts of the narratives discussed. But the more I read, the more patterns and connections became visible and the more it became clear how each story fit into a broader global context, despite distinct local and regional circumstances. We have made remarkable strides in conquering diseases, and there is much to celebrate. But global literature reveals the tremendous work that remains, with advocacy, care, and ultimately global healing among our greatest challenges.

Finally, I want to take this opportunity to thank Brill for the expert editorial and production care I’ve received from the very beginning, and in particular from Masja Horn and Irene Jager.

To learn more about Karen Thornber's new publication, click here.
To learn more about the Textxet series, click here.