The Spirit Catches You and You Fall Down

Book Review

by Jerry Cyccone

The book I chose to review, “The Spirit Catches You and You Fall Down: A Huong Child, Her American Doctors, and the Collision of Two Cultures”, by Anne Fadiman, is a non-fiction narrative about the collision of cultural relativism and medicine. The book describes the struggles faced by the Lees, a Hmong family that emigrated from Laos in 1980, to the city of Merced, California. The story revolves around young Lia Lee, the second born from her parents and a sufferer of epilepsy. Difficulties arise when barriers in communication, culture, and religion surface between American physicians and Lia’s parents over Lia’s treatment. These barriers, further enhanced by both side’s ethnocentric beliefs and failure to work together, resulted in creating a series of events that would eventually determine the fate of poor Lia Lee.
Lia had her initial seizure at the young age of three months old. In an unfamiliar country and not fluent in English, yet concerned by Lia’s seizure, the Lees brought Lia to Merced Community Medical Center. From the beginning, the inability of both Lia’s parents and the doctors to communicate with each other, made it almost impossible for Lia to even be diagnosed properly. In fact, the first diagnosis of Lia was that she was suffering from a “bronchial infection” (p. 26). Yes, Lia did have breathing issues, but because of the language barrier, the doctors didn’t realize until months after their first diagnosis, that Lia’s bronchitis was actually a symptom of her seizure.
Once diagnosed with epilepsy, the situation failed to become any less complicated for all involved. Lia’s doctors did what western doctors do, and that’s prescribe anti-seizure medication in attempts of mitigating the likelihood or effects of her seizures. Since there is no “cure” in either culture, the physicians’ believed that this would be the best course of action in Lia’s treatment. However, like many illnesses, the Hmong believe that epilepsy, or qaug dab peg (pronounced “kow da pay”), is spiritual in origin and not a medical condition. Their belief is that epilepsy is a condition where the soul leaves the body, translating to “the spirit catches you and you fall down” (p. 21).
Indeed, Lia’s parents shared these beliefs that Lia’s soul was separated from her physical body, wandering lost and adrift. They believed that this was caused by the stress and hardship of their journey, and attempted acclimation, to a foreign country. In the west, we treat epilepsy with modern medical practices, but the Hmong normally don’t have access to medical technology, nor do they share the same practices in medicine. Instead, the Hmong put their faith in local shamans, hoping that through sacred ritual, the body and soul can be reunited once again. This contrast in language and belief systems ultimately compounded over time, and made it increasingly difficult to treat Lia.
Reluctuantly, and despite not fully understanding the diagnosis, the Lees did attempt to medicate Lia, per her doctors’ recommendations. However, since the Lees could not read or write English, administering her prescriptions devolved into acts of futility. This confusion and inability to put Lia on a regular prescription schedule only worsened her epileptic effects, which in turn, only further widened the chasm between her caregivers. In addition, the Lees perceived the process of administering the medicine as challenging and feared the negative side effects that the medicine would give Lia. Lia’s seizures continued and so the Lees doubled-down on their beliefs, which were to give her herbs and protective jewelry, like bracelets and amulets. Also, the Lees invited the occasional visit of a shaman to perform chants or animal sacrifices.
Eventually, physicians become so frustrated with what they perceived as lack of action or caring from the Lee’s, that they called Child Protective Services and Lia was taken from her home. Lia spent the next year of her life in foster care before being returned home to her parents. The whole experience was horribly traumatizing for Lia, which only exacerbated the effects of her epilepsy, and her parents, of course, became angry and eventually bitter over the whole ordeal.
Lia’s seizures continued to worsen and in 1986, at the age of 4, she had a gran mal seizure that lasted over two hours. After the seizure, and due to the many medical procedures performed during this event, Lia contracted an infection which led to septic shock and the failure of many of her organs. Once stabilized, the doctors discovered that Lia had lost her cognitive brain functions and didn’t expect her to live much longer. However, Lia did survive and seizure free, although with virtually no mental or physical functions. Over the next 26 years, Lia’s parents cared for her in the comfort of their home in Merced, CA, until she passed away at the age of 30.
Much can be learned from, what I believe to be, this very well-written and interesting narrative, or better yet cautionary tale. “Spirit”, addresses the collision between Western medicine and holistic healing traditions of the Hmong immigrants. It shines a spotlight on the challenges faced by modern medicine, and the need to achieve a working knowledge of as many cultures as possible in health care. Also, it shows the need to integrate modern western medicinal remedies with aspects of cultural that are good for the well-being of the patient. What we see is a clash, or lack of integration, with both sides believing that their way is THE only way. If Lia and her family had been back in Laos, then her parents would have been inclined to give her herbs not widely available here in the United States. Maybe, passed down though enculturation and considered effective through trial-and-error by the Hmongbut, these herbs actually do help in dealing with epilepsy symptoms. In the west, she is forced to enter the hospital and subjected to invasive procedures and strange drugs. Who is to say which treatment would be better for an illness that we have no cure for? Maybe never taking Lia to the hospital would have been the better course of action. The well intentioned prescribing of drugs only made Lia worse due to lack of proper administration. What if the doctors had taken a more active role in trying to bridge the language and culture gaps between them and the Lees? Yet, it is very well possible that neither approach would have given Lia more time or better quality of life. Maybe, and unfortunately, Lia was just a ticking time bomb and it was all just a matter of time before her body couldn’t handle the seizures anymore.
However, one thing I believe is that a lot of trauma and grief could have been avoided on both sides, but in particular with regards to Lia, if more of an attempt was made in keeping an open, and unbiased, mind when communicating. I believe both the doctors and, of course Lia’s parents, truly cared about the well-being of Lia. Though, I cannot help but think that maybe the doctors should have made more of an attempt to reach out to the Lees. I think they failed to recognize how difficult it can be moving to a place so far away from their homeland and so different culturally. The Lees were, undoubtedly, intimidated by a culture that almost force-feeds assimilation. They were also proud of their Hmong heritage, and believed in maintaining their culture despite these forces, no different than how an American would react if the tables were turned.
“Spirit” also tackles issues about how much authority the government should have in making medical decisions for families. In turn, how much freedom should parents have over the raising of their own children? I, personally, do not think it was the right thing to remove Lia from her parent’s custody, but what if the child has a treatable form of cancer and western medicine could potentially save the child’s life. Would it be right for the government to intervene then? Growing up in Florida, it reminds me of Terry Schiavo, and how her husband, and legal guardian, believed that keeping her on a feeding tube was no way Terry would have wanted to live. Yet, the state government and her consanguine felt it necessary to intervene, at least for some time, in keeping Terry’s feeding tube in, completely on life-support. Where’s the line? I’m not sure I know that answer to that question, but I appreciate how this book has made ponder the thought.
Initially, I was drawn to this book over the other literature choices because I have a genuine curiosity about the differences in eastern and western approaches to medicine and healing. However, over the course of reading “Spirit”, my mother was, unfortunately, diagnosed with multiple masses and what looks like is aggressive, and possibly terminal, cancer. So, in the process of reading, I went from wondering what I would do if I were Lia’s parents, to what course of action do I think my mom should take in dealing with her illness. We do not have all the information yet, still waiting for the final word from the Oncologist, but even though there is no language or cultural barrier to overcome, I cannot help but feel connected to the process and struggle that the Lee family went through. If it really is stage 4 cancer, which is what they’re concerned it is, then there is no real cure and should my mom be subjected to any intensive medical processes, like chemotherapy. Hopefully, the Oncologist comes back this week and says her cancer is treatable, and if so I am sure my mom would want to fight it out. However, it really does feel like a fine line to balance in wanting to make sure my mom is comfortable and has the best quality of life, with possible invasive treatment that could actually end her life quicker. Maybe going through chemotherapy is not the best way to accomplish our desire to make sure she’s comfortable and not in pain, but maybe chemo can add time to her life expectancy. I guess the right approach just depends on the situation and the people involved, but I am definitely glad that no one is making that decision for her, or us. Honestly, it is a decision that I wish my mom, and my family would never have to make, but reading this book was almost cathartic in my process of dealing with the news and everything that comes along with it. So, besides finding “The Spirit Catches You and You Fall Down”, a well-written, and fair assessment of cultural relativism and its clash with modern medicine, more simply, I find it to be a great example of the human condition, the choices we make (whether we believe them to be right or wrong), and their possible repercussions.