“…instead of inquiring about the physician’s skill or credentials, he asked, “Do you know someone who would care for me and love me?”
This one stunning statement, uttered by a man of Hmong descent, embodies my entire philosophy about what’s gone terribly wrong with our health system.
I devoured ‘The Spirit Catches You’ and immediately began recommending it to my health care friends – some because they ‘got it’ and it would validate their approach to caring for others, and others because they did not get it at all. I hoped for those who are philosophically misaligned with me that this book would be their epiphany to stop judging, eye rolling and labelling patients and their families whose values were not the same as their own.
The Spirit Catches You and You Fall Down is a call for understanding and compassion. It is a simply told story about a very complex situation (which is no easy feat in writing – I have deep respect for writer Anne Fadiman). A family, the Lees, of Hmong origin, arrive as refugees from South East Asia to California. They present at the local hospital with their young daughter named Lia, who is diagnosed with epilepsy. Great miscommunication between the family and the health providers ensues, and eventually Lia experiences brain damage. The family blames the doctors; the physicians blame the non-compliant parents. In the end it is the family who is correct. Lia’s well-meaning, highly educated physicians injure her with their woeful ignorance.
While some might write this off as a tale of a child’s acquired brain injury, this is really the story of a family’s unconditional love. It shares cautionary lessons that reflect poorly on the rigid close-hearted health professionals. Blame not the family nor the system, it is the health care providers who let this family down. The professionals neither care for nor love the family, and dismiss them as foreign, obstinate, non-compliant and plain stupid. This value-laden lens does not even begin to touch the complexities of this family and their culture. It is the highly educated ones who end up terribly wrong.
As Anne Fadiman says, “the Westerners’ knowledge was not a gift. It was coercion.” She says she stood in awe of Lia’s parents, Foua and Nao Kao, who “stood firm in the face of expert opinion.”
This book is so important on so many levels, and I’m heartened to hear it is required reading in some medical schools. It calmly points out the great inequities of our Western health system, where it is demanded that parents surrender all control of their child when they walk through the hospital doors. For those from the Hmong culture, they hold no class system, which means that, “nobody was more important than anybody else.” This disregard of physicians’ status infuriated most doctors, who were used to being at the top of their medical totem pole. This book also points out how people working in the health system immediately view difference as inferiority.
The only people who showed compassion towards the Lee family were the ones who paused to try to understand the ‘why’ behind the family’s actions. And if they could not understand the ‘why,’ they chose to simply accept the family instead.
This is a book about cultural humanity. My most illuminating take away is that medicine has its own very strong and inflexible culture that demands compliance from its patients based purely on its own perceived superiority. But what if the so-called experts aren’t the experts at all? What if it is patients and families who are the experts, and it is the professionals that are simply temporary lenders of knowledge?
There is a concluding passage that strikes me at a personal level, as it speaks to the value of difference.
While the health providers throw their hands up at Lia when she becomes permanently disabled, labelling her a ‘vegetable,’ the author disagrees. “How can I not say (Lia’s) life is not valuable when she means so much to the people around her? How can I say she has nothing to contribute when she’s altered my life with my family and my life as a writer?”
This is a transformational book. Maybe we’ve placed importance on all the wrong things – what if the solution to healing people is not knowledge and expertise – it is caring and love instead?