The Spirit Catches You and You Fall Down by Anne Fadiman is a thought provoking and important read that really challenged my thinking of the way we approach medicine in the US, and treating patients from different cultural backgrounds. This book tells the story of Lia Lee and her family, who emigrated to the United States from Laos in 1980.
The Lee’s, a Hmong family, settle in a small community in Merced, California, also home to the Merced Community Medical Center, or MCMC. MCMC, Lia’s birthplace, would also soon become a frequent setting throughout Lia’s childhood after her diagnosis with epilepsy, and a mountain of reoccurring medical issues due to her seizure disorder. Fadiman takes the reader through both Lia and her family’s journey, adding in information surrounding Hmo
ng culture and their turbulent history, as well as the perspective of the doctors who treated Lia. What results is a crucial narrative of navigating cultural differences in medicine and life, and how communication can drastically impact a patient’s care.
Fadiman illustrates the intricate challenges that exists in providing medical treatment to Lia including language and cultural barriers. Lia’s parents do not speak English, and are not literate in either English or Hmong. This presents an immediate barrier in communication when discussing Lia’s state, symptoms, and highlighted throughout the book, her medication. The author delineates the significant issue of Lia’s parents being able, and willing, to provide Lia with medication that the doctors at MCMC believe to be vital for her care. Her doctors change these prescriptions and amounts frequently, only adding to the complex routine. Lia’s parents provide Hmong treatments that they believe will help Lia recover spiritually and physically, as these are completely intertwined in the Hmong culture. At points Lia’s parents express that they are unsure if the medicine provided by the doctors at MCMC are not only not helping Lia, but making her sicker. The doctors at MCMC seem to fail to understand the medical practices within the Hmong culture, and are often dismissive of Lia’s parents as being able to care for a sick child, in terms of providing medicine and following their instructions. Despite this, a theme echoed throughout the entire novel, is Lia’s parent’s absolute adoration of Lia. She is described as a rambunctious toddler, and always in the arms of either parent.
At first, I found myself upset with Lia’s parents. Lia’s seizures were not getting better. They did not follow the treatment plan, and although their unfamiliarity with numbers and measurements for prescriptions certainly presented a challenge, they also expressed their unwillingness to provide this medicine. Her doctors expressed concerns over her development, and how this could have been avoided. However, I also soon become empathetic for Lia’s parents, and their unrelenting effort to help Lia. The author describes a justified distrust of the medical community amongst the Hmong people, particularly those recently settled in the U.S. A lack of translators presents one challenge, but even with a translator- how does one translate something that the other language does not even have a word for? Or that this concept doesn’t even exist within this culture? This does not just create a gap in communication, it creates a canyon. Lia’s parents did not trust her doctors, and they just saw Lia getting sicker. They have trusted their ways of treating the sick for their entire life, and chose to continue to follow their method of healthcare for what they believed to be best for their child.
I was also frustrated with Lia’s doctors throughout this book. They seemed to look down upon Lia’s parents, and did little (with the exception of one or two physicians) to try and understand the Hmong culture, despite a significant Hmong community living in Merced. However, on a similar note, they too expressed their sincere efforts for Lia’s wellbeing and frustration that what they were taught, everything they trained so much for, couldn’t help them with this case. Some expressed a real fear that they would be the physician on call when Lia would have the one seizure the all knew was coming- the seizure that could be fatal.
That seizure, “the big one”, did happen, when Lia was four years old. But Lia did not die. It was incredibly severe, and Fadiman’s description of this is heart wrenching. Following this seizure, the doctors caring for Lia believed she would pass quickly, and began to remove life support. After confusion during conversation where one physician believed Lia’s parents to have agreed to remove life support, when they had not, her parents were outraged, (How can this drastic of a miscommunication exist?!). Doctors eventually allowed Lia’s family to take her home, believing she would pass away fairly soon following this, as she was in a vegetative state. However, Lia went on to live (with no change in her state) until she was 30 years old, passing away in 2012. This is significantly longer than most in similar conditions. The author highlights her family’s dedication to her daily care and attention to Lia. The author also notes the impact that this had on Lia’s parents and family, being consistent caregivers for so long.
The impact of this book has been vast on the medical community, and the progressing concept of how culture and language impacts medicine. As a former Anthropology student, I thought this book did a wonderful job at presenting this idea of ethnocentrism in medicine. How does western medicine differ (and is similar) to that of different healthcare practices around the globe? Why is this often viewed as the one way to treat patients? How can doctors better treat patients from cultural backgrounds and beliefs different from their own? I think one of the biggest struggles I faced with this book was if a doctor is tasked with diagnosing and treating this patient, especially with a problem that could be life threatening, how do they deal with a parent not following these guidelines? Were Lia’s parents irresponsible? During a portion of Lia’s childhood, as reflected in the book, she is taken away from her parents and placed into a foster home, for about a year. I think this was one of the most difficult parts of the book, trying to decide who I felt was right and wrong in this situation. But in truth, what Fadiman brings forth, is that this was not a scenario of clear right and wrong doings (although certainly there can be justified claims of errors made by all of those entrusted with Lia’s care), as both sides thought that what they were doing what was best for Lia. For anyone interested in medicine, or simply those who interact at all with the US healthcare system, The Spirit Catches You and You Fall Down is a vital story to be read, and to take forward with you.
Kelley Fitzgerald, PreHealth Advisor