The Spirit Catches You and You Fall Down: A Hmong Child, Her American Doctors, and the Collision of Two Cultures- A Review

[The Spirit Catches You and You Fall Down: A Hmong Child, Her American Doctors, and the Collision of Two Cultures by Ann Fadiman]

The Spirit Catches You and You Fall Down, by Ann Fadiman, is considered of the genre medical anthropology.  I had never actually heard of this subfield of anthropology but it “examines the cultural, social, and biological factors that influence health, illness, and healthcare practices.”  The author herself is not an anthropologist, she is a writer, but the book delves deeply into the medical field and is often used as an example of medical anthropology.

The story is about Lia. Lia was born with a seizure disorder. Her parents, Hmong immigrants, don’t speak English. Not only that, but their understanding of seizure disorders is based on a strong belief in an alternative parallel spiritual world where deebs or evil spirits can influence any individual’s well-being. They believe that during a seizure, a spirit catches you and you fall down. Children with this affliction are seen to be exceptional, with a special direct connection to spirits. In Hmong culture, most ailments are believed to be caused by those spirits. Elaborate incantations or rituals are performed to bring the healthy soul back. The Hmong believe strongly in herbal remedies, and non-medical treatments such as “cupping.” Many of the words used in medical terminology simply do not exist in the Hmong language, such as “pancreas,” or “depression.” Depression for example, in addition to the influence of a deeb, is often described by Hmongs as a “broken liver.” Difficult liver, broken liver, rotten liver are all used to describe grief, loneliness, memory loss, and more. When it comes to medical decisions and treatments, social norms are strictly defined. Any medical related decision must be made with the agreement of clan leaders, family elders, and the male patriarch.  

It is in this context that Lia’s world collides between Western medicine and her family’s belief system.

As a newborn, her parents bring her to the hospital. She is given antibiotics for pneumonia. The parents have no way of explaining the seizures they see in English, since they don’t speak the language. And even if they could, a description of the “spirit catches you and you fall down,” is not likely to be understood. As the little girl grows, her seizures become more frequent, and she is eventually diagnosed. She becomes known in the hospital due to her repeated multiple hospitalizations, and she is prescribed a complex anti-seizure treatment regimen at home.

Her parents are unable to read the medicine bottles. They are illiterate. They also notice side effects on Lia of some of the medications that make them hesitant to administer them. Attempts are made by the hospital administration to send nurses to their home, but due to language, culture, and social barriers, the visits fail overall. Eventually, the treating physician requests that Lia be placed in foster care to ensure that she receives her medications as prescribed.

This is traumatic for both the parents and Lia, who simply cannot understand how a child so loved can be taken away from them. The foster parent herself disagrees with Lia’s placement and goes out of her way to make sure the mother has time with Lia and she listens to her needs.

Enter Jeanine, a social worker who becomes pivotal in the story. She is different, she sees the Hmong as human and is willing to work with their beliefs to help them navigate the medical system. With her help, Lia returns to her parents. The seizure regimen is changed to one medicine, Depakene (Valproic Acid), and the parents do their best and are overall compliant.

The final critical medical incident described in the book is traumatic. Lia presents to the emergency room with status epilepticus, a high fever and diarrhea. The doctors attempt to stabilize her seizure, completely missing the fever and signs of septicemia.  This time it was not because of a language barrier, but because the physicians were so used to her seizure disorder that they overlooked the other signs. She is transferred to a larger facility where she is placed under anesthesia to control the seizures, and her condition overall stabilizes with IV antibiotics. Unfortunately, it all comes too late. Lia is brain dead. An EEG proves the condition and the parents are informed that life support will be terminated and that she will die in a few hours.

The parents have very little understanding of what is going on. The father signs papers that he does not understand. He thinks that they will kill Lia in a few hours. He tries to take Lia and run, but he is restrained by security. He yanks out the naso-gastric tube because he doesn’t understand why it’s there. A spinal tap is seen as an attack on his child. Finally, the hospital discharges Lia to her home, where she is expected to die within a few days. The parents hope that she will get better with their care.

Lia continues to live for decades. Scientifically, she has nothing but a functional cerebellum. And yet she responds to her mother’s presence, her sister’s presence. The family and the community take care of her. They repeatedly hold rituals asking the spirit to bring her soul back. They hold birthday parties for her. Years later, her father has passed away, and her sisters continue to care for her.

The author poses hypothetical questions and answers for this unfortunate outcome of a child. Who do we blame? If Lia had been diagnosed early on, would she have fared better overall? If she had been given a single dose medical regimen early on, would the parents have been more compliant? If she hadn’t been taken from her home, would the parents have trusted the medical center more? Whose fault is it?

The parents believed that the spinal tap and excess medications killed her. The doctors thought it was the parents’ long-term non-compliance before Depakene. The truth is somewhere in between. The Depakene she had been prescribed caused a drop in WBCs, which led to compromised immunity, led to a septic infection of Pseudomonas, which led to the status epilepticus. If she hadn’t had a seizure disorder she would have presented with a coma or shock… which could still have led to her brain death. And so the question becomes not who is to blame, but what can we learn?

Fadiman does extensive research, interviews with doctors, managers, nurses. She goes over thousands of pages of Lia’s charts. She interviews members of the community and spends hours at Lia’s home. She poses questions about the practice of medicine in the US. Are you, as a medical staff, willing to let go of bias? To see the “other” as human? To acknowledge holistic or cultural aspects of healing? Are doctors treating the patient, or are treating the disease? What is the difference? How much is the medical community willing, in a country such as the US with hugely diverse populations, to acknowledge the degree that racism has compromised the care of others?

The author questions “Cartesianism,” a Western philosophy that separates the mind (including emotions, experience, consciousness) from the body (a physical machine like entity).

Is Lia a “vegetable?” as the nurse refer to her?

“How can I say she is not valuable when she means so much to the people around her?” is both the question and answer.

It is clear in Lia’s case, there is obvious arrogance and resentment on the part of both the doctors and nurses treating her. In the medical charts Lia and her family are described as “Mong,” “no religion,” “animals,” “stone age,” and other derogatory references. One doctor was asked how he communicates with Lia’s family and he said, “veterinary medicine.”  No attempt was made to provide interpreters, or to reach community leaders or to embrace any of their beliefs.

The author provides a historic context for this racism.

The Hmong are very proud people. They survived thousands of years by resisting assimilation.  Their history in China and the region of Laos/Cambodia/Thailand is the same. They were able to preserve their culture and heritage by “flight” where they simply move higher up in the mountains. Or they “fight” to protect their land and living.  The Hmong refugee resettlement to the US was in the aftermath of a “fight.”  In the chaotic aftermath of post WW2 and the division of the region into countries, the fight between communism and nationalism was ongoing.

The Hmong had an important role as they were allies of the US forces fighting the communist forces. The author describes in detail the disturbing end to this alliance. Four airplanes took the elite of military Hmong to safety to Thailand. Everyone else (including Lia's family) had to escape Laos on foot. The road to escape is horrific. People are shot at, bombs exploded on the journey, people died of starvation and left on the side of the road to rot. Entire boats of family members drowned crossing into Thailand. In return, as some sort of reward, the Hmong were given a choice, either stay in refugee camps, or apply for asylum in the US.

And so it was that the 60’s and 70’s witnessed hundreds of Hmong moving to the US. Once they arrived, they thought they would be welcomed, having stood with the US allies. Instead, they were met with hostility and suspicion. They were blamed for draining resources and accused of living off the government. They were accused of eating pets. They were seen as barbaric and backward. Life on the ground was hardly ready to accommodate any of their beliefs or style of life. They were also faced with the pressure to assimilate, something they had long rejected in order to survive. Little effort was made on the part of the government or receiving community to help them learn English, to learn driving, or any essentials. An example of this was driving tests. The Hmong developed ways of sewing the answers to the driving test on their clothes in a pattern, since they could not read the questions or answers.  

The events of this book span the 70’s, 80’s, 90’s. Some things have changed for the better, and some things are the same. Hmong shamans, for example, can now take medical courses and are allowed to perform certain rituals near the beds. Many medical services have been successfully translated into Hmong language.  For other minorities, their spiritual needs can be accommodated in many hospitals. When I was sick in the hospital I had no problem requesting that a Muslim Chaplain read to me Quran and pray with me. When I was a fellow, interpreters were readily available and remote interpreters through Martii gave access to over 200 languages for any of my patients.

Things that haven’t changed: bias and racism against immigrant patients or immigrants in general, still present. The pressures of assimilation and struggles to adapt to the US are challenges for any new migrants. The lack of communication between medical institutions and the population that they serve is also present in many areas.

This book should be essential for anyone in the medical field. The story of Lia is one of many similar stories that we hear of. Sometimes it’s on a large scale, like entire groups receiving less quality care than others. Sometimes it’s minor like a patient misunderstanding where to pick up medications. Cultural clashes can still lead to unfortunate outcomes. Reading this book is a reminder that It is important to accommodate beliefs, involve community members, provide outreach and understanding of the diverse populations that make up our patients, and to build trust between health care workers and patients.

For me, I can relate to the Hmong culture at some levels. I come from a religious background where healing is intwined with religious verses, prayers, turning to God. Seeking medicinal treatment is commanded at the same time. I come from a culture where evil eye and other paranormal are blamed for people’s illnesses. But my ancestors were the first to explore human anatomy, surgery, treatments for basic ailments and more. Never did one negate the other, both belief and medicine work in tandem to make a being whole, healthy in mind, soul and body. Humans are spiritual beings, on a human journey, and both journeys must be embraced, in my point of view.

I recommend this book for anyone in the medical field, anyone who works with immigrants on a daily basis. There is a breadth of knowledge about the Hmong culture and history which was incredibly informative. Lastly, I recommend this to anyone who questions the medical bioscience culture, Cartesianism, and would like to see their patients from a different and more holistic perspective.