The Spirit Catches You and You Fall Down is the story of Lia Lee, a Hmong toddler with epilepsy. Lia was born in 1982 to parents who had recently immigrated from Laos and settled in northern California. She was the youngest of 14 children (two of whom died in Laos) and the first to be born in the US. Lia’s mother, Foua Lee, and her father, Nao Kao Lee, only spoke Hmong although their children spoke English. Due to a series of miscommunications and misunderstandings between Lia’s family and her doctors, Lia had a massive seizure in 1986. After the seizure, the only part of Lia’s brain still functioning is her brainstem.
I’m not going to lie to you, Marge: when I first read this book, it drove me crazy. I was – and still am – biased in favor of Western medicine, and it infuriated me that the Lees just would not listen to Lia’s doctors. Why go to the doctor if you won’t take his/her advice? That’s a waste of everybody’s time. Many of the Hmong portrayed in the book – not just Foua and Nao Kao – just didn’t seem to understand that once in awhile, the doctors might be right. The author falls into this trap too; at one point, someone actually has to remind her that Western medicine saves people’s lives.
Having said that, Fadiman does not fall into the pattern of so many other authors covering medical mistakes and misunderstandings: she portrays Lia’s doctors as human beings. Fadiman did extensive interviews with all of Lia’s doctors and goes into great detail on why they did things the way they did. As a result, she avoids the cliche of “doctor with no compassion who’s only in it for money and prestige.” Lia’s doctors aren’t Dr. House; they’re Dr. J.D. Dorian.
A new edition of the book came out in 2012, fifteen years after it was originally published. The new edition includes an epilogue with updates on Lia’s family and medical team. Lia is, amazingly, still alive. Most people in her condition don’t survive more than five years; Lia has been alive for almost five times that long. Nao Kao died of heart failure in 2003, but Foua is still living and still cares for Lia at home with the help of Lia’s siblings. Lia’s doctors are all still practicing medicine and still serving the underserved.
The author draws one big conclusion at the epilogue, one that surprises her. Lia is in her late twenties now and has never gone to high school, had a job, kissed a boy, driven a car, or done any of the other things a “normal” adult would do, but her family loves her beyond measure. Her parents found great joy in caring for Lia, and her siblings adore her. Despite the fact that she’s in a vegetative state, Lia’s life matters! And maybe that’s the best lesson of this book – no matter how damaged a person is, their life matters.