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  • 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 awide array of historical information regarding these diseases. Epilepsy is another diseasethat has a vast amount of information set in an historical context, as well as medical orsocietal contexts. According to a prominent epilepsy researcher, Dr. Berge Minassian,“‘epilepsy is one of the most common neurological disorders affecting over 40 millionpeople worldwide.’”1 Being a disease that is fairly common to come in contact with, thesocial ramifications of the disease vary greatly. Keeping this in mind, the author of thisfinal project chose to focus her comparative study of epilepsy on U.S. society and Hmongculture, specifically looking at the cultural implications for the disease, as well as howthese societies understand and heal this disease. Epilepsy, or what may sometimes be called a seizure disorder, is “…the recurringconvulsion, brief period of unconsciousness, or altered behavior caused by sudden andunusual discharge of electrical energy in the brain.”2 According to Pediatrics forParents, there are certain symptoms one should look for when trying to determine if afamily member has epilepsy. These characteristics include: “…blackouts or periods ofconfused memory; episodes of staring or unexplained periods of unresponsiveness;involuntary movements of arms and legs; fainting spells with incontinence or followed byexcessive fatigue; and odd sounds, distorted perceptions, episodic feelings of fear that1 “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.
  • 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], oralcoholism.”4 Additionally, recent research in Great Britain has shown a possible linkbetween epilepsy and people living in deprived areas, suggesting that those living in thesedeprived areas may be five times more likely to contract this disease.4 Seizure disorders and epilepsy are often mistaken for other illnesses, and epilepsyitself may be misdiagnosed in patients, specifically children. Oswei Temkin alludes tothe 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 thepreface to the first edition, Temkin states, “For, on the one hand, there are many organicdiseases which may lead to the same syndrome as is exhibited in ‘genuine’ epilepsy; onthe other hand, it is very difficult, if not impossible, to draw a distinct borderline betweenepilepsy and certain cases of severe hysteria.”5 Due to problems such as breath-holdingspells in children, which can show many of the same symptoms and characteristics asepilepsy, children are often being misdiagnosed. The book, The Spirit Catches You andYou Fall Down: A Hmong Child, Her American Doctors, and the Collision of TwoCultures, follows the life of a young Hmong girl who was diagnosed with epilepsy andthe various cultural misunderstandings that soon follow. However, when this child firsthad a seizure, she was misdiagnosed with a pneumonia-like illness due to a congested3 “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.
  • chest and difficulty breathing. Only later would this child’s illness be correctly identifiedas 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 involvespiritual theories (such as possession by an evil spirit) are usually not in circulation. Thisis not to say, however, that many members of this society then have a deep understandingof what may cause this disease, only that it is an illness that is not caused by supernaturalfigures. Additionally, those people who are diagnosed as someone with epilepsy have anenormous array of channels through which to find help. Literature is available for toperuse in order to learn how to cope with epilepsy, or help their child live with thedisease. With the many technological advancements made in the past decade, there areeven established web rings and listserves, including LiveWire, an “informal listserve forcommunication in the epilepsy research community.”7 The most common form of helppeople will seek out is from a doctor. Many people in this society will first seek help andunderstanding from a medical professional in order to receive a diagnosis and start atreatment. Although members of the United States medical profession, specificallydoctors, are notorious for using medical jargon that often succeeds in only confusing thepatient, English-speaking members of U.S. society often have the ability to speak to theirdoctor without an interpreter and can usually follow the often strict drug regimentsprovided to control their illness. Furthermore, more and more information is becoming6 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. View slide
  • available for people with epilepsy or parents who have children with epilepsy, thatinformation regarding treatments is shared across the country through emails and childrenare learning of historical figures who are thought to have epilepsy in their historytextbooks. Treatments for epilepsy usually include one of three possible treatment options.The most common treatment option for people with epilepsy is drug therapy. There arenumerous options for the types of prescription drugs that are used. Often, the medicationthat is found most effective will need to be found over time, which has the highlikelihood of frustrating those who must take the medication in a society that is used toreceiving one medication to quickly end an illness.8 Furthermore, the side effects of thedrugs being used makes this process even more complicated, since side effects caninclude hyperactivity, depression, and even osteoporosis. Additionally, there is noguarantee that epilepsy can be controlled using medication. In 30% of children, seizurescannot 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 specializedsurgery may be an option. Those children who have severe epilepsy and an area of thebrain, which is easily pinpointed as the cause of the erratic brain activity, can becomecandidates for surgery.9 During the surgery, the brain tissue that is deemed affected is8 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. View slide
  • removed. A surgery such as this may be beneficial for children especially, since theirbrains 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 isstarving, which somehow reduces seizures.11 At this time, it is still unknown how thisdiet is able to reduce seizures. For the diet to work, a strict meal must be followed. Onlycertain types of food and beverages are allowed with this diet, and even using the wrongtoothpaste can affect epilepsy.11 Furthermore, it is especially important with this diet towork closely with trained specialists, such as doctors, dieticians, and nutritionists in orderto ensure that nutritional and growth deficiencies (especially in children) are notoccurring.11 However, even with the many medical advancements made in the area ofepilepsy, certain biases and stereotypes exist of epilepsy and people living with thedisease. According to the World Health Organization, 40% to 60% of people withepilepsy of working age are employed, an additional 15% to 20% are unemployed, and20% retire early in the United States, Germany and Italy.12 Furthermore, since seizuresare difficult to watch and react to, many myths about epilepsy and seizures still exist inthe United States. These myths can range from epilepsy being a mental illness to10 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, 2002.1112 Epilepsy: Social Consequences and Economic Aspects. World Health Organization. http://www.who.int/inf-fs/en/fact166.html. 1998.
  • epilepsy causing brain damage and/or mental retardation.13 As such, people may behesitant to hire a person with epilepsy, parents of children with epilepsy may watch theirchildren more closely and forbid them to engage in certain activities, and teachers mayexclude children with epilepsy from certain activities without consulting a doctor or thechild’s parents. In short, even with the many medical advancements made in the UnitedStates society today, those people with epilepsy still face discrimination and stereotypesregarding their neurological disorder. In contrast, the Hmong community’s understanding of epilepsy greatly differs. InFadiman’s book, Lia Lee, a young Hmong girl living in Mercer, California wasdiagnosed with epilepsy. When Lia was three years old, she began experiencing seizuresafter her older sister slammed the door of their apartment. Lia’s parents, Nao Kao andFoua Yang, almost immediately recognized Lia’s first seizure as “qaug dab peg”, or “thespirit catches you and you fall down.”14 In Hmong culture, after a child is born, he or sheparticipates 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 frighteningexperience. In Lia’s case, the slamming of the door was loud enough to scare her soulaway from her body, causing her to go into seizures since an evil spirit (or dab) wascatching her.1513 “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.
  • Traditionally, the Hmong hold those people with epilepsy in high regards in theircommunity. Although their community understands the severity of the disease, and theimpacts it has on people, there is a special distinction for those with qaug dab peg. Intraditional Hmong religion, which is largely described as shaman animism, people withepilepsy more often than not are called into the tradition of becoming shamans. Theseizures they experience “…are thought to be evidence that they have the power toperceive things other people cannot see, as well as facilitating their entry into trances, aprerequisite for their journeys into the realm of the unseen.”16 Furthermore, the fact thatthe shaman, or txiv neeb, has a disease such as epilepsy only gives them more credibilityas 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 mustfirst fall sick, either through a seizure or another disease or illness, which causes theperson to shiver and experience pain. After this occurs, a txiv neeb is brought in todiagnose 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 thisvocation, since a healer is given a high status in the Hmong community, and the years oftraining and preparation are often well worth it.16 Even if the person with epilepsy is notchosen to be txiv neeb, he or she still enjoys a certain level of respect in the communitydue to the spiritual aspect associated with seizures.1616 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, 21.1111
  • Due to Lia’s illness, she held a special place in her parents’ hearts. The child wasshowered with affection, love, and gifts. For example, “Lia was the only Lee child whohad birthday parties.”17 Moreover, the older sister who had slammed the door that theLees believed caused Lia’s seizures was treated poorly for an incredibly long time. Eventhough a person with qaug dab peg is believed to have a divine nature, Lia still lost hersoul 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 broughtinto the doctor for an examination. For the Hmong community, this step is oftenincluded as well. However, other steps may be taken. A healer may be called in toperform a special ceremony to call back the person’s soul. The Lees even took Lia to seea special healer in Minnesota, a three-day car trip, in order to improve Lia’s health as herepilepsy soon deteriorated her body.18 Animals, such as chickens and pigs, may besacrificed as well. Usually, special herbal remedies that contain specific ingredients totarget the seizures are rubbed on the person’s body. In Lia Lee’s case, her parents evenattempted to changing her name in order to confuse the spirit enough so he evacuates herbody.19 Eventually, as was the case with Lia Lee, the person would probably be taken tosee a doctor. In the case provided by Fadiman, the interaction between the United Statesdoctors, educated in an environment where strict steps must be followed to help this child17 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.
  • control her seizures, and Lia’s parents, raised in the Hmong community where certaincultural understandings do not include much of the Western medical information, led tomutual misunderstanding. The culture of the United States can often support many of thecultural practices held by recent immigrants such as the Hmong, but may also causecultural misunderstandings that can lead to degradation, resentment, mistrust, and evenanger. One of the first and obvious ways in which the United States failed to supportrecent 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 withthe doctors since no one around them was able to understand and communicate inHmong, and Lia’s parents knew no English. Eventually, hospitals were able to offerinterpreters, but often only for a brief period before funding for these programs was cut.Soon, the responsibility of communicating between these two cultures became theresponsibility of the children or other relatives. Another way in which the U.S. medical system has been unsuccessful in creatingtrust and understanding in the Hmong community has been through the lack ofunderstanding 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 aroundantibiotics in refugee camps in Thailand, pills were to be given for only a short period oftime.20 Also, Hmong patients often came to the doctor to hear that something was wrong20 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.
  • with them, which means that diagnoses of psychological or emotional ailments (such asdepression) were especially difficult to explain. Additionally, doctors were unaware ofthe cultural taboos that centered around the drawing of bodily fluids. Thus, doctors didnot understand any cultural implications for routine procedures, such as spinal taps andthe drawing of blood.21 Furthermore, doctors were unable to understand the culturalimplications of non-Western medicinal techniques. Obviously, the Lees wanted to givetheir daughter the best, which included herbal remedies the doctors and nurses did notoften understand. Nurses, resident doctors, as well as other patients would usuallycomplain of the noise that Lia’s family, which often included members of the entire Leeand Yang clans, would make while visiting her. However, this is not to say that the doctors do not allow for some compromisesregarding the Hmong community and epilepsy. It is becoming more and more likely thatmembers of medical teams will make house calls to Hmong families, as well as otherfamilies that have difficulty trusting hospitals. Additionally, doctors and nurses oftenunderstand certain cultural practices of the Hmong community. For instance, doctors inMerced knew enough about the culture to understand that the men of the entire clan mustmake a large decision regarding a patient.22 However, even though doctors knew theimportance of certain decisions, it does not necessarily mean that they were patient whilethe family was deciding, since often these decisions took hours while a family membermay be in peril danger.22 Furthermore, it is important to note that just like not all Hmong21 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
  • people may practice the same religion and have the same beliefs in regards to Westernmedicine, not all doctors are clueless about their Hmong patients’ choices in treatmentsand healing options for themselves or their loved ones. As discussed, epilepsy is the most common neurological disorder in the worldtoday. With this title comes many different cultural understandings of this disease, aswell as different treatment options. When two different societies co-exist and intermingleto treat this disease, an unbelievable amount of misunderstandings can happen betweenthese two cultures. The Hmong culture and U.S. society are no different, with many ofthe traditional Hmong spiritual beliefs interrupting the ideas of U.S. doctors and Westernmedicine. However, in the end, it is possible for these two cultures to co-exist in order tosupport the life of one member of their mutual community.
  • 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 butfactual article also dispels myths related to epilepsy and offers symptoms of epilepsy thatare 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. Thisis especially helpful when talking to children, both with and without epilepsy, aboutstigmas 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 theneurological disorder, and goes to great lengths to debunk myths associated with thedisease.“Epilepsy Poverty Link.” Asia Africa Intelligence Wire, September 29, 2003.*Although a brief article, this article was the only one this author came across thatsuggested 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 isthorough, and includes amazing cultural implications of epilepsy in different eras ofworld 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’sDigest by a child who wishes to understand her disorder. The doctor briefly explains thedisease in a way a child can understand, includes how many young people in the U.S. hadepilepsy 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 andadolescents are diagnosed with epilepsy in the United States, as well as provides anexample of important medical updates made in recent years.“Social and Psychological Aspects of Epilepsy”, The Exceptional Parent, Wendy
  • Mitchell and Tracey Flourie, October 1999, v29 i10, 69.*This article helps parents understand many social myths and taboos that will now centeraround their child who has been diagnosed with epilepsy. Furthermore, this article isgreat 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, herepilepsy diagnosis, her family, and their interactions in the U.S. medical system. Itweaves 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 ontelevision programming directed at today’s youth, this article contains importantinformation regarding a possible connection between television programming andseizures.“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 pediatriciansin regards to seizures. The authors are excellent at breaking down febrile convulsionsinto more simplistic, easier to grasp concepts so parents can understand the seizureswithout feeling frightened. This article also contains tables relating to treatment offebrile 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 childrenwith epilepsy. It includes cases of interest, many of which serve an important societalcontext 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, thisstill harbors relevant information and includes an especially concise summary ofketogenic diets. This web-site also mentions the possibility of breath-holding beingmisdiagnosed as epilepsy.Epilepsy in Children. Department of Neurology at the University of Chicago. http://ucneurology.uchicago.edu/. 2003.
  • *This website offers a Western doctor’s approach to epilepsy in children, and includesmuch 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-esteemand 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, itstill contains information about other countries’ values of epilepsy, and even includesinformation on the United States and other Western countries.