The Spirit Catches You And You Fall Down is a work of literary nonfiction that chronicles the life and medical troubles of a young girl named Lia Lee. In the 1980s, Lia is a young member of Merced, California’s Hmong population, a group of immigrants and refugees who had previously lived in the highlands of Laos. Lia, who is epileptic, struggles in the American medical system, a drama that inspires Fadiman to consider the nature of American medicine while also providing a comprehensive ethnographic study of Hmong culture. Though the text primarily focuses on the Lees, Fadiman speaks with many community members and Hmong experts in order to round out her portrayal of a rich and complex culture. Although the history and extraneous anecdotes she brings to light are too numerous to examine in detail here, it is important to know that Fadiman’s project is fueled not only by the specifics of Lia Lee’s story, but also by an anthropological curiosity regarding the complicated intersection of Hmong and American culture.
Unlike Foua Lee’s thirteen other children, Lia is born in a hospital. The others, many of whom died in early childhood, Foua delivered herself while squatting over the dirt floor of her and Nao Kao’s home in Laos. Although she is born healthy, Lia has a seizure when she is three months old after her older sister Yer loudly slams a door. Her father and mother believe this noise frightened Lia, causing her soul to retreat from her body. This, Fadiman explains, is a common belief in Hmong culture, a phenomenon referred to as quag dab peg, or “the spirit catches you and you fall down” (a dab is an evil spirit; the Hmong believe there are many dab lurking and waiting to afflict unsuspecting humans by stealing their souls). The Hmong regard quag dab peg in a complex way, for although the affliction involves evil spirits and “soul loss,” it also often marks somebody as physically capable of becoming a shamanistic healer, since healers—or txiv neebs—have seizures in order to commune with evil spirits, bargaining and fighting to regain the victim’s stolen soul. Txiv neebs are highly respected in the Hmong community, so although the Lees—who are highly protective and caring parents—mourn the loss of Lia’s soul, they are also pleased by the idea that she may one day become a healer.
This conflicted optimism starkly contrasts the beliefs held by the staff of Merced’s local hospital, MCMC. After her first episode, Lia has twenty more seizures in just a few months. Although the Hmong are skeptical of the efficacy and reliability of Western medicine, the Lees are worried enough to rush Lia to MCMC twice during this period, hoping to be given a short run of medication that will fix Lia’s ailing body and stabilize her condition. Unfortunately, Lia stops seizing before arriving at the hospital both times, and due to a lack of translators (Nao Kao and Foua speak no English), there is no way to tell the doctors why they’ve come. Eventually, on her third visit, Lia arrives while still seizing. In addition, they meet a doctor named Dan Murphy, who is curious about Hmong culture. This is unusual; at MCMC, most of the doctors are annoyed by the number of Hmong patients they see who are unwilling to accept proper treatment.
Through the help of a nephew who translates everything into Hmong, Dan explains that he needs to insert an IV into Lia’s scalp to deliver a dose of Valium that will stop her from seizing. Although Nao Kao and Foua are resistant, Dan eventually convinces them and he is able to stabilize Lia. Totally unaware that the Lees have already diagnosed their daughter with the spiritually-charged quag dab peg, Dan diagnosis her with epilepsy. Wanting to monitor her condition, he keeps her in the hospital for several days before discharging her and giving Nao Kao and Foua directions to administer a specific medicinal regimen they have no way of understanding or following.
As previously mentioned, the Hmong attitude toward Western medicine is one of relative skepticism. In some cases, Hmongs believe that hospitals and certain medicines are capable of making people even sicker than they already were. This is not a malicious perspective, but rather the direct result of their spiritual practices and commonly held beliefs. For example, the Hmong believe that when people are unconscious, their souls are “at large,” meaning that any form of anesthesia essentially invites dabs (evil spirits) to harm them. Despite these misgivings, Nao Kao and Foua continue to take Lia to MCMC when she has major seizures, which happens many, many times; in fact, between the ages of eight months and four and a half years, she is admitted to MCMC 17 times and makes over 100 visits to the emergency room. During this period, the Lees meet Neil Ernst and Peggy Philp, two head pediatricians at MCMC who are fiercely intelligent, inquisitive, quick to admit their mistakes in the name of problem solving, and, strangely enough, married to one another.
Neil and Peggy go to great lengths to improve Lia’s condition, trying to explain to Nao Kao and Foua in full detail how to administer the medications they prescribe. But as the seizures continue, it becomes clear that the Lees aren’t sticking to the medication regimen. At first the doctors believe that this is due to a lack of comprehension. After all, the Lees don’t speak English and, for that matter, can’t even read in their own language. Thus, the complex cocktail of various medications proves difficult to follow, which leads Lia to continue to have seizures that threaten her brain development. To remedy this, MCMC convinces the Merced County Health Department to begin sending public health nurses to the Lee household in order to monitor Lia’s medication intake. Not one of these nurses, however, is able to get through to Nao Kao and Foua, who nod along to directions but fail to follow through with the regimen when left to their own devices. After reading these nurses’ notes, it becomes clear to Peggy Philp that the Lees are being noncompliant both because they don’t fully understand the importance of each medication and because they distrust the actual drugs.
From Nao Kao and Foua’s perspective, however, having observed the many side effects of each medication, they are convinced that “too much medicine” negatively affects their daughter, who is at times hyperactive, upset, or sluggish and unsteady. This is a concept their doctors have trouble understanding, since as physicians they’re used to compliant patients who, like them, wholeheartedly believe in the efficacy of medicine and scientific study. In contrast, Foua tells Dan Murphy one night in the hospital that she doesn’t think a person should ever have to take medicine forever. It comes as no surprise, then, that the Lees stop giving Lia any medication at all for three months. The next time Dan sees Lia, she is being rushed into the hospital in the middle of a serious grand mal seizure.
Struggles continue between the doctors and the Lees. Neil Ernst grows increasingly frustrated that Foua and Nao Kao refuse to give Lia all the necessary medication, a decision he believes is eroding her brain capacity. Eventually, a nurse pays a house visit and discovers that the Lees are not only failing to administer all of the proper medications, but are actually giving double the amount of one drug against the doctor’s advice. Upon discovering this, Neil Ernst writes a letter to Child Protective Services (CPS) urging them to place Lia in foster care because of “poor parental compliance,” stating that “this case obviously would come under the realm of child abuse, specifically neglect.” He informs CPS that, should the Lees continue to care for their daughter in this manner, Lia will be at the risk of “irreversible brain damage and also possibly death.”
Shortly after Neil writes this note, Lia is placed in foster care for two weeks, after which she returns home in order to give Nao Kao and Foua one final chance to properly administer the medications. Still, though, blood tests reveal that Lia is not taking the prescribed amounts, and she is once again taken away—this time for a minimum of six months, a period during which her parents are expected to prove themselves capable of caring for her needs. Lia is placed into the custody of Dee and Tom Korda, two loving and generous caretakers who become close with Foua and Nao Kao, encouraging them to visit and, eventually, even officially suggesting to the government that they regain custody of their daughter. At the six month mark, though, Nao Kao and Foua are deemed unfit to care for Lia due to their failure to sign a certain document and because, during a one-week trial period in which they were allowed to take Lia home, they again gave her no medication, resulting in yet another hospitalization.
During this period, a particularly diligent social worker named Jeanine Hilt dedicates herself to teaching the Lees how to properly administer their daughter’s medications, working closely with Foua to ensure she knows how much to give the little girl. Eventually, with Jeanine’s support, Lia comes home to live with her family. After a relatively quiet period, Lia falls off a swing, hits her head, and goes into status epilepticus, a state that can cause permanent brain damage. Although doctors manage to stabilize her, she develops a rare infection of the airway, where a breathing tube is placed. As a result, she must stay in the hospital for two weeks. “The doctors made Lia stay so long in the hospital, and it just made her sicker and sicker,” Nao Kao remembers.
Three weeks later she has yet another intense seizure and her doctors are forced to rethink her medications (which the Lees have been diligently serving). Neil begins to fret that Lia is destined to have a large seizure that he’ll be unable to stop. On the night before Thanksgiving in 1986, this fear materializes: Lia is admitted to MCMC and for a long time they are unable to stop her from seizing. When they’re finally able to stabilize her, she has been in status epilepticus for almost two hours—even 20 minutes of status epilepticus is considered life-threatening. Harrowed by the experience and worried about her continued wellbeing, Neil has Lia transferred to Valley Children’s Hospital in Fresno, a facility better equipped to handle her situation. Unfortunately, though, Lia arrives in Fresno in the middle of yet another violent grand mal seizure, her lips and nailbeds blue, her arms and legs stiffly thrashing. Dr. Kopacz, who treats her for twelve consecutive hours that night, diagnoses her as being in “profound shock, probably of septic origin.” Septic shock is a “bacterial invasion of the circulatory system.” Furthermore, Lia’s brain has, for all intents and purposes, died. Despite their best efforts, the doctors at Valley Children’s Hospital are certain she is on the brink of death. Foua watches in horror as a doctor—who thinks the Lees have agreed to take Lia off life support—walks into the room and disconnects her daughter from the IV lines.
Convinced that the doctors at Valley Children’s Hospital irreversibly damaged their daughter by giving her far too much medicine, the Lees request that she be moved back to Merced to die in the presence of her family. Although they don’t allow Lia to go home right away, Jeanine Hilt arranges with Valley Children’s Hospital to transfer the young girl—now in a completely nonresponsive state—to MCMC, where she spends four days before finally returning home to die. When she arrives, her parents set to work preparing natural Hmong healing remedies, boiling herbs and washing her body with the mixture. And to the surprise of her American doctors, she doesn’t die.
When Fadiman herself meets the Lees, it is two years after Lia has entered a nonresponsive state. That is to say that for two years, her doctors have been waiting for her to die, baffled by the fact that she’s still alive. Despite her complete paralysis, her parents diligently care for her, frequently hosting txiv neebs and practicing Hmong animal sacrifices in the name of calling her soul back to her body. In a conversation with Dr. Hutchinson, who oversaw Lia’s care at Valley Children’s Hospital, Fadiman explains that the Lees believe Lia’s brain damage was brought on by the medicine she took. Hutchinson admits that, because Depakene (one of the drugs she was on) may have lowered her immune system and made her more susceptible to bacterial infections, this assessment “may not be too far from the truth.” When Fadiman looks at him in bewilderment, he says, “Go back to Merced […] and tell all those people at MCMC that the family didn’t do this to the kid. We did.”