The Modesto Bee has published a lovely tribute to Lia Lee, her devoted family and her contribution to knowledge and practice of medicine.
By Stephen Magagnini
Foua Yang crumpled in tears on the staircase in her south Sacramento home, just feet from the empty hospital bed where her daughter Lia Lee lived most of her life.
“I’m deeply saddened that Lia’s no longer of this world, I love her very much,” said Yang, clutching a picture of Lia as a lively 4-year-old in traditional Hmong finery, running from her mom.
Lia – who in July celebrated her 30th birthday in that bed surrounded by her mother, brother, seven sisters and numerous nieces, nephews and cousins – died Aug. 31 after a lifelong battle against epilepsy, cerebral palsy, pneumonia and sepsis, a toxic reaction to constant infection.
Her family’s struggles with hospitals, doctors and social workers were chronicled in Anne Fadiman’s best-selling 1997 book, “The Spirit Catches You and You Fall Down,” which altered America’s views on cross-cultural treatment. She became a symbol for all disabled children and immigrants intimidated and confused by Western medicine.
Lia Lee’s family allowed journalist Anne Fadiman into their home and private life, even allowing her to witness a shamanic ceremony performed as an attempt to call Lia’s spirit back to her body, back to her loved ones. They allowed Ms. Fadiman to read Lia’s medical records, interview her social workers. After the book was published, readers wanted to know what happened to Lia. The family continued to care for her every day of the rest of her life, but they did so in privacy. The American way of going public for self expression or for a cause, was not their way.
The Spirit Catches You and You Fall Down is a fair-minded and insightful account of the failures that led to a tragic outcome in the treatment of Lia Lee.
Kmareka has a nurse’s review of the book with links to Hmong-American sites. A generation of Americans are connected to Hmong culture through their parents who came here as refugees of the Vietnam War.
There will always be tragic miscommunications as we are all fallible. We can only and always strive to do our best. Lia Lee did not die in vain, the example of herself and her family teaches us all to do better.
UPDATE: As of 12:30pm Sept 2, there is no new news on Google regarding the condition of Lia Lee, but we received a comment from Jeff, “I am writing with sad news. Lia Lee, the daughter of Hmong immigrants whose life story inspired the The Spirit Catches You and You Fall Down, died Friday, August 31st, 2012.”
We send our deepest condolences to the family of Lia Lee. Caring for a child with such need creates a powerful love, and I know she will be sadly missed.
This is a review originally published on Kmareka December 9, 2009, of ‘The Spirit Catches You and You Fall Down’.
Anne Fadiman’s book is a powerful work of journalism, years in the making, that analyzes step by step the failures in communication and a clash of cultures that left a little girl in a chronic vegetative state– caught between life and death.
There were many mistakes, and even more missed opportunities to prevent this catastrophic outcome, but no villains. That is, unless the villain is war itself. Specifically, the war in Southeast Asia where the Hmong were recruited as soldiers and then left stranded in refugee camps or dropped into a life in the US they weren’t prepared for. The following passages are from Marcy Sheiner, taken from her website Dirty Laundry. Check out the whole article for insight into the history that brought the Hmong to the United States, and Lia Lee to Merced, California. Thank you to Marcy for letting me quote her here.
For assisting the CIA in Laos, the Hmong were promised they’d be welcome in the U.S.—but when the troops left the country, they jetted only generals and hotshots out, leaving the rest of the populace to fend for themselves. With the Laotian army hunting them down as enemies of the state, Hmong families set off on foot, carrying whatever they could manage. Many, particularly the old and the young, died along the way. Most possessions were eventually shed.
When they arrived in Thailand they were put into refugee camps, where they waited to be rescued by the Americans. Those who were finally brought to the States were ‘resettled’ all over the map, without regard for family cohesion or transferability of survival skills: Detroit, Minneapolis, Utah, Vermont—the Hmong were distributed all over the country so as not to unduly ‘burden’ any one locality.
The Lee family settled in California, and Lia was born American. She should have had the best medical care in the world. Her doctors and nurses were well-intentioned, her care expensive. But mis-communication thwarted the best efforts of all the people involved in her care.
Q: Can you talk a little about Lia’s doctors (Neil Ernst and Peggy Philp) as doctors?
They are as excellent in the medical sphere as Lia’s parents are in the parental sphere. Neil and Peggy are warm, competent, highly skilled clinicians, both Phi Beta Kappa graduates of Berkeley who chose Merced because they wanted to serve the underserved. If I lived there they would be my children’s pediatricians. Communication between them and the Lees was defeated when the culture of medicine ran up against the culture of the Hmong: two very strong, stubborn, uncompromising cultures. The impasse had nothing to do with any professional or personal shortcomings on the part of these excellent doctors.
Unlike many American patients, Lia Lee had continuity. Her pediatricians, Drs. Ernst and Philp, were husband and wife. They alternated taking call at night. They lived just a few minutes from the hospital and responded many times to Lia’s medical emergencies. Lia was not shuffled from doctor to doctor, but had the care of experienced doctors who knew her from infancy. This shouldn’t have turned out so badly. From Mai Na M. Lee, Professor of History at University of Minnesota, via Hmongnet…
When Fadiman arrived in Foua and Nao Kao Lee’s apartment in 1988, she found Lia, their seven-year-old daughter who was pronounced brain dead two years earlier by her American doctors, alive and lovingly cared for. Lia had her first epileptic seizure when she was just three months old. According to the Lees, recent immigrants from the Secret War of Laos who did not speak English and could not even communicate their infant daughter’s sickness to the doctors, the seizure stemmed from spiritual causes. After several seizure episodes, and only when Lia was brought in still convulsing did the doctors properly diagnosed her as suffering from epilepsy. From the American doctors’ perspective, Lia’s condition was biological in origin and could be alleviated with drugs. Over the next four years Lia’s anticonvulsant prescriptions changed 23 times. Gradually, the Lees doubted the effects of these complicated multiple prescriptions. When they refused to administer the drugs to Lia, the doctor had Lia placed in foster care. A few months after returning home to her parents, Lia had a massive seizure which left her brain dead. With death imminent, the doctors allowed the parents to take Lia home. Two years later, when Fadiman arrived to investigate the story, the Lees still harbored hopes of reuniting Lia’s soul with her body and arranged for an elaborate pig sacrifice.
I cared for a child in a vegetative state, and heard her grandparents calling to her, “Wake up, wake up.” It’s unbearable to witness. It seems so impossible that a child could be living and breathing but unreachable forever.
Lia Lee was 5 years old when she suffered her brain injury. She must be 27 years old now.
Lia’s family allowed Anne Fadiman into their home and their confidence. It’s all the more striking that they have not followed the American way of seeking attention, for vanity or for a cause. They don’t have an internet presence. It seems like everyone close to Lia or her family protects their privacy.
Anne Fadiman’s book is now used as a text for health professionals. Lia’s doctors teach other doctors how to care for patients across cultures.
UPDATE: Many are wondering how Lia and her family are doing now. They are very private people. Follow the Dirty Laundry link and scroll down to a comment by Janice K. for the most recent news I could find on the net.
I’m pasting a book review on Amazon.com here– the writer has not identified herself except as Lia Lee’s sister, it was posted in 1997…
I don’t think I should be writing in here since I am a part of the book. This book was amazing! It took me two days to read it and of course I shed a few tears on the way. My sister, Lia Lee, is doing well although she will never be able to see the bright sunlight or the incredible stars that we see everyday and everynite. She is an incredible child with so much love and affection from her family and the many friends she have encountered during her hardships. I was only 7 when all this happened, but I do recall everything from the door slamming incident to the day the doctors told my family that it was okay for her to come but she will not live pass 7 days. I will never forget that week or those many years of pain my family or the doctors had to go through. This book has given me a better view of what can really happen when two different cultures have their own ways of interpreting medicine or life in general. We must understand that different cultures have different ways of curing a person and doctors have their policy they must follow. To avoid another incident like this, we must work together as a whole and not blame each other for not cooperating with one another. Lets hope this book tells us what can happen in the future if we don’t work with this now. Anne did a great job on this book! My family couldn’t have ask for more. She has become a great friend of my family and we are greatful for it. Anne-thank you !
CONNECTIONS: I gave my copy of ‘The Spirit” to a Hmong-American student who is training to become a medical assistant. She says she likes the book. She showed it to her family and she said she would email me their comments on it.
PROVIDENCE, RHODE ISLAND: On the way to a community garden party I saw some Hmong ladies walking together. They were dressed in their traditional clothes. South Providence was home to my Irish grandparents, now to Asian, Central American and African immigrants. We’re the smallest state with the richest culture.
A PRAYER: To always strive to listen to my patients, across whatever differences divide us.