Tuesday, April 25, 2017
The Spirit Catches You and You Fall Down
This story is an emotionally charged account of one little girls’ struggle with Lennox-Gestaut Syndrome, a severe form of epilepsy and the problems that both the family and doctors faced due to barriers of both culture and language. Lia Lee and her family were Hmong refugees from Laos. They came to America in 1980 after escaping extremely harsh conditions following the Indochina wars. The Hmong people in Laos were primarily rice and opium farmers that lived in the mountains of Laos, Vietnam, and China. The Hmong live isolated from other ethnic groups, even within their own countries.
The Hmong people have animistic beliefs and view all illnesses as problems of the spirit, where Dabs, or evil spirits attack the soul of the individual causing various physical afflictions as well as other problems in life. Their healers are much like witchdoctors and use herbal medicines as well as chanting while in a trance-like state coupled with animal sacrifice to remove these evil Dabs through a bartering of souls.
The Hmong view of epilepsy is referred to as- the spirit catches you and you fall down. Epilepsy, to them is a condition in which the soul leaves the body and becomes temporarily lost.
None of Lia Lees’ family spoke English, so their interactions with the doctors were very frustrating for both the Lees and the doctors; especially since the Hmong had very little trust in the doctors that stemmed largely from rumors and wives’ tales of doctors eating the brains of organs of their patients.
Lias’ seizures were so severe and frequent that by the age of 4 ½ she had been admitted to the hospital 17 times and had over 100 outpatient visits.
The parents were defiant, and either because of the language barrier, their mistrust in the medical industry, or both- they failed to to administer Lias’ medications on time or in the proper amounts. At times they might dangerously increase one medication because they saw it made improvements, or stop giving another medication entirely because they perceived that they were hurting her. Other times they would stop giving her medications entirely because they saw that she had responded well for a couple of weeks and assumed that she was better and only should be on the medication while she was ill. This was maddening for the doctors who felt that they could actually help her if the parent would cooperate with the proper dosage and intervals of the medications that she was prescribed. To be fair, those medications, dosages, and intervals were constantly being changed and updated by the doctors, and because of their inability to speak or read English, coupled with their spiritual beliefs and mistrust for the doctors, this was a very difficult regiment for the Lees to follow.
Eventually Lia was taken out of the Lees’ custody and placed into foster care, by court order. This was very difficult on Lia and her family, who despite ineptitude with the treatments, did love her very much. While in foster care her condition began to worsen, this time not because of a failure to follow instructions with medications, but perhaps because of Lia’s emotional distress from being separated from her family. She was eventually allowed to return to the custody of her family with the caveat of the Lees having gone through counseling via interpreters and strict adherence to the proper administering of medications.
Her family finally began giving correct amounts of medicine and at the correct intervals, which they could tell via monitoring the drug levels in her blood. Despite this, Lia continued to have regular seizures and eventually had what her doctors referred to as “the Big One,” which came very close to killing her. She suffered severe brain damage and was left in a state of comatose.
The family was allowed to take her back home, essentially to die in her home with her family instead of at the hospital. The Lees gave her herbal medicines from plants that they grew in their driveway, and had various spiritual treatments given to her by the Txiv Neeb, or the witchdoctor/ healer that the Hmong people use for all of their illness. The doctors assumed that she was imminently close to death and were continually befuddled that she went on living. In fact, after a while she was in much better shape physically than ever, as she had been obese her entire life, and had lost a healthy amount of weight and was maintaining it. The brain damage that she endured actually ended her epileptic seizures, so aside from being in a vegetative state, she was in perfect health. “A perfect vegetable,” a doctor had said. She continued to live with her parents, who doted on her, and stayed with her 24 hours a day, for fear that the state would come and try to take her away again. Unfortunately she never regained consciousness, but somehow, through the care of her parents, she lived in that unconscious state until she finally passed away on August 31st, 2012 at the age of 30, weighing only 47 pounds.
The chapters of the book alternate back and for the between telling Lias’ story and describing the history and plight of the Hmong people. The Hmong as farmers migrate among the mountainous regions doing what they refer to as slash and burn agriculture, using the land until it is depleted of nutrients and the burning the fields, which helps to replenish the earth for later use. Because of the intense levels of difference between the Hmong and American culture, many of the Hmong people feel a deep sense of roll loss, as well as roll reversal; where in their culture the grandfather would have the most important role in the society, but because of their difficulty in assimilating, here the children often take on the most important roles because of the ease in which they are able to adapt and learn the language. In addition to the struggles that the Hmong deal with amongst themselves, they also receive a lot of vehemence directed at them from locals, especially in Merced, California which has become a central hub for the Hmong refugees which moved there in droves.