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  1. 1. Kristin Fleischmann December 2, 2003 Cultural Implications of Epilepsy in Hmong Culture and U.S. Society Diseases such as smallpox, bubonic plague, and even tuberculosis often produce a wide array of historical information regarding these diseases. Epilepsy is another disease that has a vast amount of information set in an historical context, as well as medical or societal contexts. According to a prominent epilepsy researcher, Dr. Berge Minassian, “‘epilepsy is one of the most common neurological disorders affecting over 40 million people worldwide.’”1 Being a disease that is fairly common to come in contact with, the social ramifications of the disease vary greatly. Keeping this in mind, the author of this final project chose to focus her comparative study of epilepsy on U.S. society and Hmong culture, specifically looking at the cultural implications for the disease, as well as how these societies understand and heal this disease. Epilepsy, or what may sometimes be called a seizure disorder, is “…the recurring convulsion, brief period of unconsciousness, or altered behavior caused by sudden and unusual discharge of electrical energy in the brain.”2 According to Pediatrics for Parents, there are certain symptoms one should look for when trying to determine if a family member has epilepsy. These characteristics include: “…blackouts or periods of confused memory; episodes of staring or unexplained periods of unresponsiveness; involuntary movements of arms and legs; fainting spells with incontinence or followed by excessive fatigue; and odd sounds, distorted perceptions, episodic feelings of fear that 1 “Scientists Identify Gene for Most Severe Form of Adolescent Epilepsy.” Biotech Week, October 1, 2003. 2 Epilepsy in Children. PageWise, Inc. http://allsands.com/Kids/Health/epilepsychild_swy_gn.htm. Copyright 2001.
  2. 2. cannot be explained.”3 Epilepsy can be caused by a variety of environmental factors, including “…brain damage from birth injuries, head injury, stroke, brain tumours [sic], or alcoholism.”4 Additionally, recent research in Great Britain has shown a possible link between epilepsy and people living in deprived areas, suggesting that those living in these deprived areas may be five times more likely to contract this disease.4 Seizure disorders and epilepsy are often mistaken for other illnesses, and epilepsy itself may be misdiagnosed in patients, specifically children. Oswei Temkin alludes to the often ambiguous signs and symptoms of epilepsy in his book, The Falling Sickness: A History of Epilepsy from the Greeks to the Beginnings of Modern Neurology. In the preface to the first edition, Temkin states, “For, on the one hand, there are many organic diseases which may lead to the same syndrome as is exhibited in ‘genuine’ epilepsy; on the other hand, it is very difficult, if not impossible, to draw a distinct borderline between epilepsy and certain cases of severe hysteria.”5 Due to problems such as breath-holding spells in children, which can show many of the same symptoms and characteristics as epilepsy, children are often being misdiagnosed. The book, The Spirit Catches You and You Fall Down: A Hmong Child, Her American Doctors, and the Collision of Two Cultures, follows the life of a young Hmong girl who was diagnosed with epilepsy and the various cultural misunderstandings that soon follow. However, when this child first had a seizure, she was misdiagnosed with a pneumonia-like illness due to a congested 3 “Epilepsy – A Few Facts.” Pediatrics for Parents, September 1991, 5. 4 Epilepsy Poverty Link.” Asia Africa Intelligence Wire, September 29, 2003. 5 The Falling Sickness: A History of Epilepsy from the Greeks to the Beginnings of Modern Neurology, Oswei Temkin, Baltimore: John Hopkins Press, 1971.
  3. 3. chest and difficulty breathing. Only later would this child’s illness be correctly identified as epilepsy.6 In United States society, epilepsy has its share of implications in greater society. Since many understand epilepsy to be a neurological disease, explanations that involve spiritual theories (such as possession by an evil spirit) are usually not in circulation. This is not to say, however, that many members of this society then have a deep understanding of what may cause this disease, only that it is an illness that is not caused by supernatural figures. Additionally, those people who are diagnosed as someone with epilepsy have an enormous array of channels through which to find help. Literature is available for to peruse in order to learn how to cope with epilepsy, or help their child live with the disease. With the many technological advancements made in the past decade, there are even established web rings and listserves, including LiveWire, an “informal listserve for communication in the epilepsy research community.”7 The most common form of help people will seek out is from a doctor. Many people in this society will first seek help and understanding from a medical professional in order to receive a diagnosis and start a treatment. Although members of the United States medical profession, specifically doctors, are notorious for using medical jargon that often succeeds in only confusing the patient, English-speaking members of U.S. society often have the ability to speak to their doctor without an interpreter and can usually follow the often strict drug regiments provided to control their illness. Furthermore, more and more information is becoming 6 The Spirit Catches You and You Fall Down A Hmong Child, her American Doctors, and the Collision of Two Cultures, Anne Fadiman, New York: Farrar, Straus, and Giroux, 1998, 26. 7 American Epilepsy Society. http://www.aesnet.org/. Updated weekly.
  4. 4. available for people with epilepsy or parents who have children with epilepsy, that information regarding treatments is shared across the country through emails and children are learning of historical figures who are thought to have epilepsy in their history textbooks. Treatments for epilepsy usually include one of three possible treatment options. The most common treatment option for people with epilepsy is drug therapy. There are numerous options for the types of prescription drugs that are used. Often, the medication that is found most effective will need to be found over time, which has the high likelihood of frustrating those who must take the medication in a society that is used to receiving one medication to quickly end an illness.8 Furthermore, the side effects of the drugs being used makes this process even more complicated, since side effects can include hyperactivity, depression, and even osteoporosis. Additionally, there is no guarantee that epilepsy can be controlled using medication. In 30% of children, seizures cannot be controlled with medication.8 However, in other cases, children are able to “… outgrow epilepsy and are able to discontinue anti-convulsant medication.”8 For children whose seizures cannot be controlled by medicine, a specialized surgery may be an option. Those children who have severe epilepsy and an area of the brain, which is easily pinpointed as the cause of the erratic brain activity, can become candidates for surgery.9 During the surgery, the brain tissue that is deemed affected is 8 Epilepsy in Children. CNN.com. http://www.cnn.com/HEALTH/library/HQ/00627.html. February 7, 2002. 9 Epilepsy in Children. Department of Neurology at the University of Chicago. http://ucneurology.uchicago.edu/. 2003.
  5. 5. removed. A surgery such as this may be beneficial for children especially, since their brains may be better equipped to repair itself following surgery.10 Another possibility is a special diet called a ketogenic diet, which is a low- carbohydrate and low-protein diet. This diet is able to trick the body into thinking it is starving, which somehow reduces seizures.11 At this time, it is still unknown how this diet is able to reduce seizures. For the diet to work, a strict meal must be followed. Only certain types of food and beverages are allowed with this diet, and even using the wrong toothpaste can affect epilepsy.11 Furthermore, it is especially important with this diet to work closely with trained specialists, such as doctors, dieticians, and nutritionists in order to ensure that nutritional and growth deficiencies (especially in children) are not occurring.11 However, even with the many medical advancements made in the area of epilepsy, certain biases and stereotypes exist of epilepsy and people living with the disease. According to the World Health Organization, 40% to 60% of people with epilepsy of working age are employed, an additional 15% to 20% are unemployed, and 20% retire early in the United States, Germany and Italy.12 Furthermore, since seizures are difficult to watch and react to, many myths about epilepsy and seizures still exist in the United States. These myths can range from epilepsy being a mental illness to 10 Epilepsy in Children. Department of Neurology at the University of Chicago. http://ucneurology.uchicago.edu/. 2003. 11 Epilepsy in Children. CNN.com. http://www.cnn.com/HEALTH/library/HQ/00627.html. February 7, 2002. 1 1 12 Epilepsy: Social Consequences and Economic Aspects. World Health Organization. http://www.who.int/inf-fs/en/fact166.html. 1998.
  6. 6. epilepsy causing brain damage and/or mental retardation.13 As such, people may be hesitant to hire a person with epilepsy, parents of children with epilepsy may watch their children more closely and forbid them to engage in certain activities, and teachers may exclude children with epilepsy from certain activities without consulting a doctor or the child’s parents. In short, even with the many medical advancements made in the United States society today, those people with epilepsy still face discrimination and stereotypes regarding their neurological disorder. In contrast, the Hmong community’s understanding of epilepsy greatly differs. In Fadiman’s book, Lia Lee, a young Hmong girl living in Mercer, California was diagnosed with epilepsy. When Lia was three years old, she began experiencing seizures after her older sister slammed the door of their apartment. Lia’s parents, Nao Kao and Foua Yang, almost immediately recognized Lia’s first seizure as “qaug dab peg”, or “the spirit catches you and you fall down.”14 In Hmong culture, after a child is born, he or she participates in a ceremony to make sure his or her soul would stay with the child forever. However, various acts can cause the soul to escape the body, which can be a frightening experience. In Lia’s case, the slamming of the door was loud enough to scare her soul away from her body, causing her to go into seizures since an evil spirit (or dab) was catching her.15 13 “Social and Psychological Aspects of Epilepsy.” The Exceptional Parent, Wendy Mitchell and Tracey Flourie, October 1999, v29 i10, 69. 14 The Spirit Catches You and You Fall Down A Hmong Child, her American Doctors, and the Collision of Two Cultures, Anne Fadiman, New York: Farrar, Straus, and Giroux, 1998, 20. 15 The Spirit Catches You and You Fall Down A Hmong Child, her American Doctors, and the Collision of Two Cultures, Anne Fadiman, New York: Farrar, Straus, and Giroux, 1998, 20.
  7. 7. Traditionally, the Hmong hold those people with epilepsy in high regards in their community. Although their community understands the severity of the disease, and the impacts it has on people, there is a special distinction for those with qaug dab peg. In traditional Hmong religion, which is largely described as shaman animism, people with epilepsy more often than not are called into the tradition of becoming shamans. The seizures they experience “…are thought to be evidence that they have the power to perceive things other people cannot see, as well as facilitating their entry into trances, a prerequisite for their journeys into the realm of the unseen.”16 Furthermore, the fact that the shaman, or txiv neeb, has a disease such as epilepsy only gives them more credibility as an healer, since they are able to sympathize with the pain and suffering of others.16 In order to be considered as a possible candidate for txiv neeb, the person must first fall sick, either through a seizure or another disease or illness, which causes the person to shiver and experience pain. After this occurs, a txiv neeb is brought in to diagnose the problem. From there, the healer may decide that this sick person has “… been chosen to be the host of a healing spirit.”16 Few people would turn down this vocation, since a healer is given a high status in the Hmong community, and the years of training and preparation are often well worth it.16 Even if the person with epilepsy is not chosen to be txiv neeb, he or she still enjoys a certain level of respect in the community due to the spiritual aspect associated with seizures.16 16 The Spirit Catches You and You Fall Down A Hmong Child, her American Doctors, and the Collision of Two Cultures, Anne Fadiman, New York: Farrar, Straus, and Giroux, 1998, 21. 1 1 1 1
  8. 8. Due to Lia’s illness, she held a special place in her parents’ hearts. The child was showered with affection, love, and gifts. For example, “Lia was the only Lee child who had birthday parties.”17 Moreover, the older sister who had slammed the door that the Lees believed caused Lia’s seizures was treated poorly for an incredibly long time. Even though a person with qaug dab peg is believed to have a divine nature, Lia still lost her soul due to the slamming of the door. Thus, Lia’s sister was to blame. In United States society, if a person has a seizure, he or she is eventually brought into the doctor for an examination. For the Hmong community, this step is often included as well. However, other steps may be taken. A healer may be called in to perform a special ceremony to call back the person’s soul. The Lees even took Lia to see a special healer in Minnesota, a three-day car trip, in order to improve Lia’s health as her epilepsy soon deteriorated her body.18 Animals, such as chickens and pigs, may be sacrificed as well. Usually, special herbal remedies that contain specific ingredients to target the seizures are rubbed on the person’s body. In Lia Lee’s case, her parents even attempted to changing her name in order to confuse the spirit enough so he evacuates her body.19 Eventually, as was the case with Lia Lee, the person would probably be taken to see a doctor. In the case provided by Fadiman, the interaction between the United States doctors, educated in an environment where strict steps must be followed to help this child 17 The Spirit Catches You and You Fall Down A Hmong Child, her American Doctors, and the Collision of Two Cultures, Anne Fadiman, New York: Farrar, Straus, and Giroux, 1998, 216. 18 The Spirit Catches You and You Fall Down A Hmong Child, her American Doctors, and the Collision of Two Cultures, Anne Fadiman, New York: Farrar, Straus, and Giroux, 1998, 111. 19 The Spirit Catches You and You Fall Down A Hmong Child, her American Doctors, and the Collision of Two Cultures, Anne Fadiman, New York: Farrar, Straus, and Giroux, 1998, 111.
  9. 9. control her seizures, and Lia’s parents, raised in the Hmong community where certain cultural understandings do not include much of the Western medical information, led to mutual misunderstanding. The culture of the United States can often support many of the cultural practices held by recent immigrants such as the Hmong, but may also cause cultural misunderstandings that can lead to degradation, resentment, mistrust, and even anger. One of the first and obvious ways in which the United States failed to support recent Hmong immigrants was through the lack of interpreters at government offices, such as hospitals, the DMV, and schools. Lia’s parents were unable to communicate with the doctors since no one around them was able to understand and communicate in Hmong, and Lia’s parents knew no English. Eventually, hospitals were able to offer interpreters, but often only for a brief period before funding for these programs was cut. Soon, the responsibility of communicating between these two cultures became the responsibility of the children or other relatives. Another way in which the U.S. medical system has been unsuccessful in creating trust and understanding in the Hmong community has been through the lack of understanding of Hmong values, specifically their cultural ceremonies. For example, Lia’s parents were hesitant to place Lia on any sort of pill for an extended period of time. In their limited interaction with Western medicine, which largely centered around antibiotics in refugee camps in Thailand, pills were to be given for only a short period of time.20 Also, Hmong patients often came to the doctor to hear that something was wrong 20 The Spirit Catches You and You Fall Down A Hmong Child, her American Doctors, and the Collision of Two Cultures, Anne Fadiman, New York: Farrar, Straus, and Giroux, 1998, 260.
  10. 10. with them, which means that diagnoses of psychological or emotional ailments (such as depression) were especially difficult to explain. Additionally, doctors were unaware of the cultural taboos that centered around the drawing of bodily fluids. Thus, doctors did not understand any cultural implications for routine procedures, such as spinal taps and the drawing of blood.21 Furthermore, doctors were unable to understand the cultural implications of non-Western medicinal techniques. Obviously, the Lees wanted to give their daughter the best, which included herbal remedies the doctors and nurses did not often understand. Nurses, resident doctors, as well as other patients would usually complain of the noise that Lia’s family, which often included members of the entire Lee and Yang clans, would make while visiting her. However, this is not to say that the doctors do not allow for some compromises regarding the Hmong community and epilepsy. It is becoming more and more likely that members of medical teams will make house calls to Hmong families, as well as other families that have difficulty trusting hospitals. Additionally, doctors and nurses often understand certain cultural practices of the Hmong community. For instance, doctors in Merced knew enough about the culture to understand that the men of the entire clan must make a large decision regarding a patient.22 However, even though doctors knew the importance of certain decisions, it does not necessarily mean that they were patient while the family was deciding, since often these decisions took hours while a family member may be in peril danger.22 Furthermore, it is important to note that just like not all Hmong 21 The Spirit Catches You and You Fall Down A Hmong Child, her American Doctors, and the Collision of Two Cultures, Anne Fadiman, New York: Farrar, Straus, and Giroux, 1998, 260. 22 The Spirit Catches You and You Fall Down A Hmong Child, her American Doctors, and the Collision of Two Cultures, Anne Fadiman, New York: Farrar, Straus, and Giroux, 1998, 71. 2
  11. 11. people may practice the same religion and have the same beliefs in regards to Western medicine, not all doctors are clueless about their Hmong patients’ choices in treatments and healing options for themselves or their loved ones. As discussed, epilepsy is the most common neurological disorder in the world today. With this title comes many different cultural understandings of this disease, as well as different treatment options. When two different societies co-exist and intermingle to treat this disease, an unbelievable amount of misunderstandings can happen between these two cultures. The Hmong culture and U.S. society are no different, with many of the traditional Hmong spiritual beliefs interrupting the ideas of U.S. doctors and Western medicine. However, in the end, it is possible for these two cultures to co-exist in order to support the life of one member of their mutual community.
  12. 12. Annotated Bibliography “Epilepsy – A Few Facts.” Pediatrics for Parents, September 1991, 5. *Mainly directed at parents who believe their children may have epilepsy, this short but factual article also dispels myths related to epilepsy and offers symptoms of epilepsy that are helpful for people of any age. Epilepsy and the Family: A New Guide, Richard Lechtenberg, Cambridge: Harvard University Press, 1999. *A recent guide to help families cope with having a family member with epilepsy. This is especially helpful when talking to children, both with and without epilepsy, about stigmas attached to epilepsy. Epilepsy at Your Fingertips: The Comprehensive and Medically Accurate Manual which Tells You how to Deal with Epilepsy with Confidence!, Brian Chappell and Pamela Crawford, London: Class Publishers, 1999. *This manual demystifies epilepsy, includes amazing medical information about the neurological disorder, and goes to great lengths to debunk myths associated with the disease. “Epilepsy Poverty Link.” Asia Africa Intelligence Wire, September 29, 2003. *Although a brief article, this article was the only one this author came across that suggested a correlation between poverty and epilepsy. The Falling Sickness: A History of Epilepsy from the Greeks to the Beginnings of Modern Neurology, Oswei Temkin, Baltimore: John Hopkins Press, 1971. *Even though Temkin’s reputation proceeds anything he writes, this historical analysis is thorough, and includes amazing cultural implications of epilepsy in different eras of world history. “I Seem to be the Only One with Epilepsy. What is epilepsy, and how do you get it?”, Children’s Digest, Cory SerVaas, July/August 1995 v45 n5. *This article is not a true medical article, but a letter written to Dr. Cory of Children’s Digest by a child who wishes to understand her disorder. The doctor briefly explains the disease in a way a child can understand, includes how many young people in the U.S. had epilepsy in 1995, and gives contact information for the Epilepsy Foundation of America. “Scientists Identify Gene for Most Severe Form of Adolescent Epilepsy”, Biotech Week, October 1, 2003. *One of the most recent articles, it provides updated facts on how many children and adolescents are diagnosed with epilepsy in the United States, as well as provides an example of important medical updates made in recent years. “Social and Psychological Aspects of Epilepsy”, The Exceptional Parent, Wendy
  13. 13. Mitchell and Tracey Flourie, October 1999, v29 i10, 69. *This article helps parents understand many social myths and taboos that will now center around their child who has been diagnosed with epilepsy. Furthermore, this article is great at dispelling many of the myths their children will now come in contact with. The Spirit Catches You and You Fall Down A Hmong Child, her American Doctors, and the Collision of Two Cultures, Anne Fadiman, New York: Farrar, Straus, and Giroux, 1998, 26. *A critically-acclaimed book that includes the case study of one Hmong child, her epilepsy diagnosis, her family, and their interactions in the U.S. medical system. It weaves important information of Hmong culture in with the experiences of this child. “TV Epilepsy”, Esquire, David Thomson, August 1998 v130 n2. *Although written in a pop-culture magazine and largely intended to be commentary on television programming directed at today’s youth, this article contains important information regarding a possible connection between television programming and seizures. “What Pediatricians and Parents Need to Know about Febrile Convulsions, Contemporary Pediatrics”, Jaspreet K. Gill and Maria Gieron-Korthals, May 2002 v19 i5. *This journal article is one of only a handful addressed to both parents and pediatricians in regards to seizures. The authors are excellent at breaking down febrile convulsions into more simplistic, easier to grasp concepts so parents can understand the seizures without feeling frightened. This article also contains tables relating to treatment of febrile convulsions. Web Resources: American Epilepsy Society. http://www.aesnet.org/. Updated weekly. *This web-site is when of the most suggested web-sites for parents who have children with epilepsy. It includes cases of interest, many of which serve an important societal context in U.S. society, as well as list-serves for professionals with an interest in epilepsy. Epilepsy in Children. CNN.com. http://www.cnn.com/HEALTH/library/HQ/00627.html. February 7, 2002. *Although not as recent as many of the latest news reports on epilepsy in children, this still harbors relevant information and includes an especially concise summary of ketogenic diets. This web-site also mentions the possibility of breath-holding being misdiagnosed as epilepsy. Epilepsy in Children. Department of Neurology at the University of Chicago. http://ucneurology.uchicago.edu/. 2003.
  14. 14. *This website offers a Western doctor’s approach to epilepsy in children, and includes much of the latest medical technology and treatments in regards to epilepsy. Epilepsy in Children. PageWise, Inc. http://allsands.com/Kids/Health/epilepsychild_swy_gn.htm. Copyright 2001. *This web-site offers parents helpful advice on how to help their child gain self-esteem and look at epilepsy in a light that is not as self-deprecating as it has been in the past. Epilepsy: Social Consequences and Economic Aspects. World Health Organization. http://www.who.int/inf-fs/en/fact166.html. 1998. *Even though this web-site did not offer the point of view of the Hmong community, it still contains information about other countries’ values of epilepsy, and even includes information on the United States and other Western countries.

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