When Lia had first begun to seize, her father, Nao Kao Lee, quickly realized that this seizure was worse than any Lia had before and called his English-speaking nephew over to call an ambulance, delaying Lia’s arrival to the hospital by a critically long 20 minutes.
When journalist Anne Fadiman asked Nao Kao why he had waited for his nephew and then the ambulance to come and get Lia, rather than running the three blocks to the hospital as he had before.
“If you take her in an ambulance, they would pay more attention to her at the hospital,” he replied.
Cultural sensitivity in medicine has become a very vogue topic. But, unless you work in the medical profession, it’s difficult to understand how catastrophic culturally insensitive medicine can be. Luckily, Fadiman successfully portrays the complications surrounding medicine and culture through the Lee family in her book The Spirit Catches You and You Fall Down for all of us who cannot see them first hand.
Lia and her parents are Hmong, a group of people who traditionally lived in the mountains of South East Asia for thousands of years, fighting or fleeing any authoritarian regime that threatened their cultural autonomy. Not until the were recruited by the United States army to fight in the Vietnam war did the majority become refugees, with several thousands fleeing to America after the war.
Fadiman weaves Hmong history, along with all of it’s cultural peculiarities, into the story of Lia’s care, suggesting that it was their tradition of stubborn autonomy that lead the Lees to clash so spectacularly with Western medicine.
The Lees were not used to having no say in their daughter’s care and the doctors in Merced, California were not used to having their patients’ parents treat diagnoses and treatment plans as opinions and optional guidelines. On top of that, the Lees do not speak English.
In Hmong culture, as in many, people with epilepsy are thought to be special. Lia wasn’t sick, a spirit was catching her, making her fall down, and that connection to the spiritual world makes epileptics born Shaman. In Western culture, epilepsy is a debilitating disease, an electrical storm damaging neurons and slowly destroying the brain. The seizures have to be stopped to prevent the sufferer from becoming mentally disabled. The way to do that is with drugs.
Fadiman does an excellent job of showing both sides of the story, interviewing all of the medical staff involved in Lia’s care and demonstrating how emotionally involved they were in her care. Lia’s two primary pediatricians, a married couple, would stay up late at night, discussing her case and worrying about her future. This is not a story about the heartlessness of Western medicine. It is however, a story of how inflexible it can be.
At first, the Lees did not administer Lia’s drugs as prescribed and she failed to get better. Not only was the drug regimen prescribed overly complicated, making it difficult for anyone to follow, let alone people who could not read the prescription bottle.
More than that, the Lees didn’t want to give their daughter medicine everyday, particularly medicine with such serious side effects. In their mind, it wasn’t the disease that was making Lia sick, it was the drugs. They also made liberal use of their own traditional healing treatments such as Shamans, coin rubbing and animal sacrifices.
The seizures kept coming and Lia’s doctors, rather than trying to work with the Lees, tried more and more aggressively to force them to comply with their prescription plan, at one point calling Child Protective Services.
Though Fadiman clearly has great affection for the Hmong people, she withholds judgement. She never says that the doctors should have done something differently, just that they could have. Fadiman doesn’t chastise or preach either, but by telling Lia Lee’s story so fully, from all sides, she shows that the in this case the person who suffered most from the lack of cultural communication in the medical system was only four years old.