By Ilana Yurkiewicz, MD
The summer before I started medical school, I lay on the grass and read. I was trying to prepare — an impossible feat, I now realize — for the challenges that would face me in my chosen career. As part of this endeavor, I picked up Anne Fadiman’s award-winning novel, The Spirit Catches You and You Fall Down.
And there went my summer; I couldn’t put it down.
Ms. Fadiman’s book unfolds the story of Lia Lee, a Hmong child with a seizure disorder, and the subsequent clash of cultures that resulted when her family came into contact with an American health care system. It details with insight and heartbreak how care can break down when a family and a medical team come from different worldviews, talking past one another even as both want what’s best for the patient.
Today, Anne Fadiman will be the featured speaker at the Blood and Beyond session, at 4:30 p.m. (W304, Level 3, Orange County Convention Center – map it). This session is a unique one where the Blood editors highlight the intersection of hematology and the humanities. Editor-in-Chief of Blood Bob Löwenberg, MD, PhD, will moderate this year’s session.
Ms. Fadiman was kind enough to share some thoughts with me beforehand, including her experience writing and reporting on Spirit, which she plans to detail in her talk. She said that when she started reporting, she was often surprised by the Hmong culture. But as she became more and more immersed, it was the American medical system that began to seem odd. “The strange became familiar, and the familiar became strange,” she said.
Ms. Fadiman joins ASH from Yale University, where she is the Francis Writer-in-Residence. The Spirit Catches You and You Fall Down was her first book, and she has also authored two essay collections. One striking feature about Ms. Fadiman’s writing is the nuance and care she gives her subjects. She made it clear, for example, that hers was a “book without villains.” Quite the contrary, “there are plenty of heroes.” She said that it frustrates her when people blame everything that went wrong with Lia’s case on the doctors when in reality, the lessons go much deeper.
“The question is: How can we change the way we deal with patients from other cultures to try to avoid misunderstanding?” she said. The way American medicine might change “to give more sensitive and effective treatment to patients in other cultures” is something Ms. Fadiman has been thinking about since the book was published in 1997. These questions in cross-cultural communication will be explored in the Sunday session. She will also discuss how both Hmong culture and western medical culture have evolved, from patient privacy rules (the author notes that now, she would not be able to get the same access to Lia’s story) to the use of hospital interpreter services.
In one of the most poignant scenes in the book, Ms. Fadiman brings readers into a healing ceremo ny for Lia. It was the second ceremony of the kind Ms. Fadiman told me she had witnessed; the first was for Lia’s mother, and the author told me that she had “no idea what was going at the time.” But by the time she was invited to Lia’s ceremony, she was engrained. “I knew them extremely well and loved them,” she said of the family. “I have enormous respect and admiration for the kind of warmth and care the shaman gave to the whole family that day.”
The author’s empathy for patients and providers alike is apparent. Recently that has extended closer to home, as Ms. Fadiman shared that her daughter is in her first year of medical school. I thought of how lessons from Spirit have already helped countless medical students and beyond. For me, Lia Lee was a vivid reminder that communicating across cultural divides in medicine is not optional, not a bonus, but a crucial, non-negotiable qualification for providers. If done skillfully, it can be one of the great privileges of our work. And when cases go wrong, the best we can do is learn from them and advocate for structural changes to make it easier.
Today, may we learn from Lia Lee, told through the voice of the incomparable Anne Fadiman.
Dr. Yurkiewicz indicated no relevant conflicts of interest.