“The Spirit Catches You and You Fall Down”
By Anne Fadiman
Small Group Literary Paper
Elizabeth Anderson, Mariah Boyd, Melissa Butler,
Laura Bytendorp, Kara Curtis, Julie Cutchen
Salt Lake Community College
Summary
Lia Lee was born on July 19, 1982, at 7:09 pm at the Merced Community Medical Center
to Foua Yang and Nao Kao Lee. She was considered perfectly healthy and after three days was
discharged to go home with her parents. After she was brought home they performed a hu plig, a
spirit-calling ritual. During this ritual, they call the soul of an ancestor to be reborn into Lia’s
body. They considered the ritual a success.
When Lia was about three months old her sister Yer slammed the front door of the Lee’s
home. A few moments later, Lia fainted. Her parents believed that in this moment Lia’s soul had
been frightened and had fled her body. This is when Lia’s seizures first began. Her parents felt
both concern and pride in Lia’s seizures. In the Hmong culture seizures are often considered a
gift of the spirits and most Hmong with seizures become shamans. On October 24, 1982, the
Lee’s carried Lia into the emergency room for the first time. Lia had been seizing and her parents
had become worried about her and walked to the emergency room from their home. By the time
they arrived the seizing had stopped. Since the Lee’s did not speak English, Lia was
misdiagnosed with “early bronchiopneumonia” and was discharged after three days. On
November 11th the same thing happened.
On March 3, 1983, the Lee’s carried Lia into the emergency room for the third time. This
time she was still seizing when they got there and a resident, Dan Murphy, was able to diagnose
her with epilepsy. During the next four years, Lia would be admitted to the hospital seventeen
times and would have more than a hundred outpatient visits to the ER and the pediatric clinic at
the Family Practice Center.
On June 28, 1983, Merced Community Medical Center asked the Merced County Health
Department to send a nurse to the Lee’s home to help them administer Lia’s medications. Over
the next four years there would be many different nurses that would be sent to their home. They
would all become burned-out after trying to work with the family. The Lee’s did not like the idea
of medications and even though the nurses did what they could to make it easy for the Lee’s to
understand, they would remain reluctant to give Lia her medication.
On January 20, 1984, Lia was admitted to the hospital when her parents brought her in
because she had been seizing again. They admitted that they had stopped giving Lia her
medication three months ago because she seemed to be doing better. That night Lia would suffer
the most severe episode of status epilepticus she had had so far. Dan Murphy had to give Lia so
much medicine that night to stop the seizing that she stopped breathing. He had to put a
breathing tube down Lia’s trachea. She was transferred to Valley Children’s Hospital in Fresno
and put on a respirator. She was released after nine days. Two months later Lia’s main doctor,
Peggy Philp, would report that Lia seemed to have a developmental delay, something they had
been worried about happening since they first met Lia and something they felt was unavoidable.
When the doctors decided to take Lia off Phenobarbital, to continue Dilantin, and to start
Tegretol, Lia’s parents did not agree. They didn’t like Dilantin, they hated Tegretol, and they
loved phenobarbital. Lia’s mom, instead, increased Lia’s dose of phenobarbital and refused to
give Lia the other medications. When Lia was between the ages of 18 months and three and a
half years there was so much frustration between the doctors and the Lees that Lia’s recovery
was stalled. They couldn’t progress because they couldn’t get Lia’s parents to help them try new
things.
On April 20, 1985, after Lia’s eleventh hospitalization, a nurse found that the Lees were
giving Lia a double dose of Tegretol. On May 1st, the nurse said that Lia’s father “now refuses to
give any Tegretol whatsoever” (Fadiman, 1997). Foua said that the combination of Tefretol and
Phenobarbital was too much for Lia and she had stopped giving Lia her medication. Lia’s doctor
sent a note to the Health Department and to Child Protective Services requesting that they
intervene. The Superior Court of the State of California acted on this request and declared Lia a
Dependent Child of the juvenile Court and removed her from the custody of her parents.
On May 2, 1985, Lia was placed in a foster home run by two Menonite sisters. Whenever
Lia became hyperactive they strapped her in an infant car-seat. After two weeks Lia was returned
home to her parents and they were given one last chance. Her blood results continued to show
that they were not giving Lia the correct dose of her medications. On June 26t, she was removed
from her home again, this time for six months. Her parents would be allowed weekly visits after
Lia was in foster care for a month. Lia was placed in the home of Dee and Tom Korda. Although
the Kordas stuck to Lia’s drug regimen, Lia was seizing more at their house than she was with
her parents.
Lia was not returned home after six months. On December 18, 1985, the court ruled that
her parents had “failed to demonstrate their ability to comply with their daughter’s medical
regimen” (Fadiman, 1997). The doctors took Lia off her previous medications and put her on
Depakene, a liquid medicine that tastes a lot like cherries. They taught Foua how to administer
the medicine and she began to trust the social worker. Nao Kao was afraid that his daughter
would never come home so he did not trust them. Starting on February 18, 1986, the Lees were
allowed to keep Lia for a series of overnight visits under the supervision of the social worker.
Lia’s blood tests showed that the Lees were giving Lia the correct dose of Depakene and on
April 30th, Lia returned home. To celebrate Lia’s return home and her good health, Nao Kao
sacrificed a cow.
On November 25, 1986, Lia had another seizure. This one lasted longer than her previous
seizures had and the Lees called their nephew so that he could call them an ambulance. Had the
Lees taken Lia to the hospital in their arms like they usually did, they would have saved twenty
minutes. Lia was on the verge of death. When she arrived in the emergency room everyone
surrounded Lia trying to put in an intravenous line. They pumped her with Valium which usually
stops seizures, but Lia’s seizures only got worse. They switched to Ativan, another medicine that
stops seizing and is less likely to cause one to stop breathing when taken in high doses. After
being pumped full of drugs, Lia’s seizures finally stopped. A twenty minute bout of status
epilepticus is considered fatal and that night Lia seized for two hours. She was transferred to
Valley Children’s Hospital and placed in the intensive care. Lia arrived at Valley Children’s
hospital at around midnight, she was having another grand mal seizure. She was diagnosed with
septic shock. They had to try to get her seizures to stop and Valium was still not working. At
11:00 am on Thanksgiving morning, Lia crashed. As a result of her septic shock, Lia developed a
disorder called disseminated intravascular coagulation. Her blood had lost the ability to clot and
she started to bleed out. Over the period of fifteen hours, her blood was removed and replaced
with fresh blood twice. The transfusion worked and for the first time in thirty-eight hours, Lia’s
lips, fingers, and toes were pink. On Lia’s seventh day at Valley Children’s Hospital, a CAT
scan revealed that there was no brain activity. The doctors started to prepare the family for Lia to
die.
The doctors discontinued all life-sustaining measures under the impression that the
family agreed that it would be best for Lia to die as naturally as possible. They took Lia off all
her anticonvulsant medications because there was no electrical activity in her cerebral cortex. Lia
could no longer have seizures. Under her parents’ wishes and with the help of the social worker,
Lia was transferred to Merced Community Medical Center for supportive care on December 5,
1986. On Lia’s second day back, Nao Kao demanded that Lia’s medications be discontinued.
The Lees believed that Lia’s medicines were killing her. They wanted to take her home. By
December 9th, they had arranged for home care. When Nao Kao thought he was being forced to
sign a paper saying that his daughter would die in two hours, he grabbed Lia from her hospital
bed and he ran. A code X was called and he was chased down. Nao Kao had removed Lia’s
feeding tube and it had to be replaced. It took four hours to replace it and to fill out the necessary
paperwork. Lia left Merced Community Medical Center at 10:15 pm in her mother’s arms. Lia
did not die that night like the doctors thought she would.
Lia did not die, but she didn’t recover either. Lia remained in a vegetative state for the
rest of her life, carefully cared for by her parents to the best of their ability. Lia’s fate would have
been much different had there not been cross-cultural misunderstanding. Lia’s parents didn’t
fully trust or understand the doctors and their medicine and the doctors didn’t understand the
Lee’s culture and beliefs. If they had been able to communicate and work together, things might
have turned out differently for Lia. Instead, Lia became brain dead at the age of four.
Description of character
Lia Lee is the fourteenth child born to Nao Kao (father) and Foua Yang (mother). Lia
arrived at 7:09 pm on July 19, 1982 in the Merced Community Medical Center in Merced
California. She weighed 8 pounds, 7 ounces and was noted that she was a healthy infant. Lia’s
Apgar scores were considered very well according to the medical personnel and she went home
three days after her birth.
Lia’s family held her hu plig, (a ritual where Lia became an official member of the
family) in the living room of their apartment. A ceremony takes place where the elders and Lia’s
parents tie strings to her wrists. This binds her soul to her body and then her parents promise to
love her. The elders bless and pray “that she will have a long life and that she will never get
sick” (Fadiman, 1997).
Lia started having seizures when she was 3 months old. Her parents felt that her illness
was an honor and they started treating her as if she was a member of royalty. It became obvious
that Lia had become her parent’s favorite. She was very beautiful and she was dressed in the
most exquisite clothing.
Although Lia’s parents were very concerned about her, the communication barrier and
the fact that Lia’s parents did not understand the “American “ way, they would not follow the
instructions that were given to them in regards to the proper care of Lia such as administering
medicines, proper nutrition, etc. Many people would think that Lia was very spoiled because she
slept with her parents, her mother always carried her and she received a tremendous amount of
attention when she would scream and holler. But, we have to remember that the “Hmong are
known for their gentleness with which they treat their children” (Fadiman, 1997).
Lia was removed from her home several times during the course of her life. The doctors
thought it was the best thing for her since her family was not giving her the medicines that she
needed to help control her seizures. Eventually the family learned to give her medicines to her
correctly with help of many individuals.
On November 25, 1986, Lia Lee had what the doctors considered “The Big One”. By the
time she arrived at the hospital, Lia was in critical condition. It took hospital personnel almost 20
minutes to start an IV line and give her the necessary medication but the seizures only got worse.
By the time doctors decided to send her to another hospital, she had been seizing for almost 2
hours.
Lia was sent to Valley Children’s Hospital in Fresno, California and while en route to the
hospital she had a grand mal seizure. She spent 11 days at this hospital in intensive care before
being transferred back to Merced Community Medical Center for supportive care. It was noted in
her chart that she had severe hypoxic brain damage and was in a vegetative state. During her
stay, Lia’s mother stayed by her side caring for her and keeping vigil.
Lia was taken out of the hospital by her parents, against doctor’s recommendations. They
wanted to care for her at their home. Her family continued to care for her, feeding her, holding
her, caressing her and talking to her. She died August 31, 2012 at the age of 30 (Marcum, 2012).
How the character is treated and why
In order to understand how Lia is treated in the book, we need to look at the cultural
significance of Lia’s condition. This condition culturally divides how a family treats their child
and what the medical community thinks is best for Lia.
Lia was loved and adored by her parents; she also suffered from epilepsy, which first
presented its onset when she was about three months old. Epilepsy among the Hmong is
perceived as a spiritual calling of importance and prestige where people with this gift can travel
beyond the body in the form of a trance, many become Shaman. Jeanine Hilt, Lia’s social worker
has been quoted with a great description on how the Lee’s viewed Lia; “They felt Lia was kind
of an anointed one, like a member of royalty. She was a very special person in their culture…..so
sometimes their thinking was that this was not so much a medical problem as it was a blessing”
(Fadiman, 1997). While difficult none the less, the family would have looked at this as being an
honor. Because of this and the great amount of time that her parents spent caring for her, a
unique bond developed.
From a medical perspective, the serious consequences of epilepsy and Lia’s condition
immediately caused the medial team to seek medication that would control Lia’s seizures. Lia
was viewed as a patient with a serious condition that needed to be monitored and maintained
with medication. Because she was treated so often by the same doctors, a level of frustration
developed out of concern when the family failed to follow the given procedures. Lia was very
difficult to treat. Peggy, one of her doctors said, “Some of the anger came from that, from our
own fear” (Fadiman, 1997). As the medications did not work or were not dispensed, Lia’s
developmental capacities were questioned. Medically the blame fell to the parents. The medical
team felt that Lia was like she was because of the parent’s blatant disregard for administering the
meds as prescribed, which could have prevented the deprivation of air to the brain during the
seizures.
Two groups are represented, ultimately both groups wanted what was best for Lia, but
what was best, was different for each group, thus affecting the way she was viewed, treated and
cared for. Culturally she was viewed and treated differently by each group and the outcome that
each group wanted was not the same.
Social norms
Epilepsy is a disorder that has been around since the beginning of man. In fact, the first
written account of this disorder was made by Hippocrates in 400 B.C. with the book titled, On
the Sacred Disease. Hippocrates challenged the world’s previous idea that epilepsy was a divine
power or a curse by identifying it as simply being a brain disorder (Epilepsy.com, 2012). Much
attention has been given to epilepsy throughout history and many people have been treated for
the disorder, including young Lia Lee.
When hearing Lia’s story, it almost seems as though her childhood was robbed from her
by her severe case of epilepsy. She was constantly in the presence of her mother and people often
felt uneasy when around her. Her activities were limited due to the fear of when her next attack
would occur and how long it would last. But perhaps the people with the most fear were the
members of her medical team, who dreaded the calls that announced Lia’s frequent arrivals at the
Emergency Room.
When considering the social norms during Lia’s childhood, which occurred during the
1980’s, I think that they are similar to the ones we have now. During this time, epilepsy was
something that doctors often treated and that many people were aware of. Like today, sometimes
the causes were discovered and other times it remained a mystery. But what most doctors and
patients knew was that proper medication could help prevent the seizures from occurring. If an
individual experienced frequent seizures it was almost expected that they take advantage of the
medication in order to prevent permanent and life-threatening effects. All decent medical
professionals did everything possible to lessen the effects of a patient’s epilepsy, as did Lia’s
medical team.
However, what fed into Lia’s traumatic childhood cannot only be pointed to the actual
brain disorder, epilepsy. One definition of social norms is, “an expected form of behavior in a
given situation” (Dictionary.com, 2012). Considering Lia’s unique situation of being Hmong and
living in the USA, the social norms of two different groups made treatment difficult. The
American doctors believed that medication, tests, blood work, and operations were an answer
and the most beneficial to a brain disorder. The Hmong saw Lia’s case as being a result of her
spirit’s wellbeing, not as a physical disorder, and believed that animal sacrifices and chants were
the best treatment. Because these two groups had opposing ideas on what was causing the
disorder, the differing social norms stopped Lia from receiving consistent treatment, which could
have possibly led to a better outcome for her.
Epilepsy has been regarded by some cultures as a divine condition and by others as an
evil condition. Unfortunately, even in the United States, there were many cruel and accepted
practices towards individuals with epilepsy well into the 1900’s. As many as 17 states had laws
prohibiting epileptics from marrying, forbade them from bearing children, and even promoted
and practiced sterilization until laws were finally passed in the 1970’s prohibiting these acts. In
spite of the new laws, discrimination against those with epilepsy remained very severe including
banning those who experienced seizures from theatres, restaurants, and other public places.
Employers refused to hire those who suffered from epileptic seizures. With the passage of the
American’s with Disabilities Act (ADA) in 1990 more clear rules and regulations were set
discouraging discrimination, but it still exists today.
Progress society has made
At the time of Lia Lee’s first seizure there were already many treatments and medications
available to treat epilepsy. The biggest problem in her diagnosis was the language barrier. Her
parents spoke only their native Hmong language. This language is very old and rarely written.
The Hmong people have had to flee from their homes, high in the mountains of Laos and
Vietnam, far from civilization. Because of the remote locations from which the language
originated and lack of exposure to Western Medicine, translating medical jargon into words the
Lee’s could understand was extremely difficult.
There were so many mistakes made by the doctors and authorities dealing with the Lees.
Their native traditions were shunned and their misunderstandings were looked at as noncompliance by nearly everyone involved. In the end the misinterpretation of her symptoms by
the hospital staff is ultimately what led to her brain death.
While the lessons learned were not learned in time to save Lia, they will benefit patients,
doctors, and other hospital staff for years to come. One of the doctors who treated Lia said that
she and her family profoundly changed medicine and that her story will forever alter the way
people deal with patients with different beliefs. All state funded hospitals are now required to
have interpreters available 24 hours a day, seven days a week.
The book written by Anne Fadiman is a valuable tool in medicine today. It has even
become required reading at such prestigious medical schools as Yale University. The book is
being used to help medical students understand possible cultural differences and the threats they
may pose to patient recovery. It is now standard for doctors to follow procedures that will help
them understand what is going on from the patient’s perspective or the perspective of the
patient’s family. Understanding patient’s beliefs will allow doctors to better explain the true
nature of their conditions and earn patient respect through this understanding. Much progress has
been made but more needs to be seen and we can only rely on the dedication of the individual
medical personnel to see this through.
Works Cited
Dictionary.com. (2012). Social Norm. Retrieved from Dictionary.com:
http://dictionary.reference.com/browse/social+norm
Epilepsy.com. (2012, November 28). History of Epilepsy. Retrieved from Epilepsy Therapy
Project: http://www.epilepsy.com/epilepsy/history
Fadiman, A. (1997). The Spirit Catches You and You Fall Down. New York: Frarrar, Straus and
Giroux.
Marcum, D. (2012, September 12). Lia Lee dies at 30; figure in cultural dispute over epilepsy
treatment. Retrieved from Los Angeles Times:
http://articles.latimes.com/2012/sep/20/local/la-me-lia-lee-20120920