Hmong sayaboury

Acknowledgments

Ib tug pas ua tsis tau ib pluag mov los yog ua tsis tau ib tug laj kab.

One stick cannot cook a meal or build a fence.

I would like to thank some of the people who enabled me to write this book:

Bill Selvidge, who started it all by telling me stories about his Hmong patients, and who became my host, intermediary, teacher, and sounding board.

Robert Gottlieb, who assigned the germinal story. Robert Lescher, my literary agent, who always knew I had a book in me somewhere. Jonathan Galassi and Elisheva Urbas, extraordinary editors who at every stage were able to see both the forest and the trees.

The John S. Knight Fellowship program at Stanford University, which, among many other boons, allowed me to study at Stanford Medical School. The classes I audited deepened both my medical knowledge and my understanding of what it means to be a doctor.

Michele Salcedo, who helped gather written sources during the embryonic phases. Michael Cassell, Nancy Cohen, Jennifer Pitts, and Jennifer Veech, who checked facts with skill and enterprise. Tony Kaye, researcher nonpareil, who tracked down answers to hundreds of questions that had stumped me for years.

The dozens of people, cited under individual chapter headings in my Notes on Sources, who were willing to pass on their knowledge.

The doctors and nurses at Merced Community Medical Center who helped and educated me, with especial thanks to Dan Murphy.

Sukey Waller, who introduced me to Merced’s Hmong leaders. They trusted me because they trusted her.

The Hmong community of Merced, whose members were willing to share their sophisticated culture with me and who earned my passionate respect.

Jeanine Hilt, whose death was a terrible loss.

Raquel Arias, Andrea Baker, John Bethell, Dwight Conquergood, Jim Fadiman, Abby Kagan, Martin Kilgore, Pheng Ly, Susan Mitchell, Chong Moua, Dang Moua, Karla Reganold, Dave Schneider, Steve Smith, Rhonda Walton, Carol Whitmore, Natasha Wimmer, and Mayko Xiong, for help of many kinds.

Bill Abrams, Jon Blackman, Lisa Colt, Sandy Colt, Byron Dobell, Adam Goodheart, Peter Gradjansky, Julie Holding, Kathy Holub, Charlie Monheim, Julie Salamon, Kathy Schuler, and Al Silverman, who read part or all of the manuscript and offered criticism and enthusiasm, both equally useful. Jane Condon, Maud Gleason, and Lou Ann Walker, priceless friends who not only read the book but let me talk about it incessantly for years.

Harry Colt, Elizabeth Engle, and Fred Holley, who meticulously vetted the manuscript for medical accuracy. Annie Jaisser, who clarified many aspects of the Hmong language and corrected my Hmong spelling. Gary Stone, who set me straight on some important details of the wars in Laos and Vietnam. Any errors that remain are my fault, not theirs.

May Ying Xiong Ly, my interpreter, cultural broker, and friend, who built a bridge over waters that would otherwise have been uncrossable.

Blia Yao Moua and Jonas Vangay, two wise and generous men who taught me what it means to be Hmong. Nearly a decade after we first met, they were still answering my questions. Would that everyone could have such teachers.

My brother, Kim Fadiman, who in dozens of late-night telephone calls responded to faxed chapters and weighed nuances of phrasing so minute that only another Fadiman could possibly appreciate them. Kim also read aloud the entire manuscript into a tape recorder so our father, who lost his sight four years ago, could listen to it.

My mother, Annalee Jacoby Fadiman, and my father, Clifton Fadiman, who through love and example taught me most of what I know about good reporting and good writing.

My children, Susannah and Henry, for the joy they have brought.

Monica Gregory, Dianna Guevara, and Brigitta Kohli, who allowed me to write by caring for my children with imagination and tenderness.

There are three debts that are unpayable.

I owe the first to Neil Ernst and Peggy Philp, physicians and human beings of rare quality, who spent hours beyond count helping me understand a case that most doctors might prefer to forget. Their courage and honesty have been an inspiration.

I owe the second to the Lee family, who changed my whole way of looking at the world when they welcomed me into their home, their daily lives, and their rich culture. Nao Kao Lee was a patient and eloquent educator. Foua Yang was a loving guide and at times a surrogate parent. I thank all the Lee children, but especially True, who helped me immeasurably during the final stages of my research and also became my friend. And to Lia, the gravitational center around which this book revolves, I can only say that of the many sadnesses in the world that I wish could be righted, your life is the one I think of most often in the small hours of the night.

I owe the greatest debt to my husband, George Howe Colt, to whom this book is dedicated. In both a metaphorical sense and a literal one, George has been everything to me. Over the years, he has made fact-checking calls, helped me file thousands of particles of research, taken care of our children while I worked, and talked over every twist and turn of character, style, structure, and emphasis. He read every word—except these—at least twice, and his editing was brilliant. When I got discouraged, knowing that George cared about Lia Lee made me believe others would as well. Were it not for him, my book would never have been written, and my life would be unimaginably dimmer.

17

The Eight Questions

Lia did not die, nor did she recover. Foua often dreamed that her daughter could walk and talk, but when she awoke, Lia lay curled next to her in bed, a slight, silent husk who hardly seemed big enough to contain her family’s load of memory, anger, confusion, and grief. She lay suspended in time, growing only a few inches, gaining little weight, always looking far younger than her age, while the Lee siblings who still lived at home—six athletic, bilingual children who moved with ease between the Hmong and the American worlds—grew up around her. Cheng joined the Marine Reserves and was called to serve in the Gulf War, but to Foua’s nearly hysterical relief, the war ended two days before his scheduled flight to Saudi Arabia. May went to Fresno State University, majoring in health science, a choice influenced by her childhood experiences, both positive and negative, as the ad hoc arbitrator between her parents and the medical establishment. Yer, a volleyball star who had won the award for Best Girl Athlete at Merced High School, joined May at Fresno State two years later, majoring in physical education. True became Merced High’s student body treasurer and president of its Youth Culture Club, a Hmong social and service organization with more than 200 members. Mai became a stand-out soccer player and was known as one of the most beautiful teenagers in Merced, a reputation that caused boys to fight over her and girls all too frequently to resent her. Pang grew from a harum-scarum toddler into a self-possessed schoolgirl with a flair for traditional Hmong dance. There were a few tremors as the Lee children passed through adolescence, but never the rifts that American families accept almost as a matter of course. “My parents are the coolest parents in the world,” True once wrote me. “We don’t have everything in the world, but we do have the closeness of us eight sisters, one brother, and our parents. This is the coolest family ever and I would never trade it for anything else in this world.”

Nao Kao gained weight and was troubled by high blood pressure. Foua felt tired much of the time. Seeing that their energies were waning, Jeanine Hilt urged the Lees to let Lia return to the Schelby Center for Special Education each day, not to educate her—that was a thing of the past—but to give her parents a few hours’ respite each day. Because of their persistent fear that Lia might be stolen from them again by the government, the Lees were reluctant at first, but because they trusted Jeanine, they eventually agreed.

Dee Korda, one of whose foster children was severely retarded and also attended Schelby, frequently saw Lia there, lying on her back with her hands strapped to blocks in order to prevent her fingers from stiffening into claws. She could hardly bear to look. The Kordas had all taken Lia’s neurological catastrophe hard. The entire family had gone through therapy at the Merced County Mental Health Department in order to deal with what Dee called “Lia being dead but alive.” At their counselor’s suggestion, the children—biological, foster, and adopted—drew pictures on butcher paper. “Wendy drew a mom and a baby, because Lia was with her mom,” said Dee. “Julie drew a rainbow with clouds and birds, because Lia didn’t have to cry anymore. Maria is real withdrawn, but when we told her about Lia she cried. Lia got through to her! She drew a broken heart with a jagged fence and an eye looking in from the outside. The heart was the sadness. The fence was the wall that Lia had gotten over by touching our lives. The eye was my eye, watching the sadness, with a tear that cried.”

In 1993, while she was vacationing at Disneyland, Jeanine Hilt had an acute asthma attack, went into respiratory failure, and suffered oxygen deprivation so severe that she lost all brain function: in other words, she developed hypoxic ischemic encephalopathy, exactly the same fate that had befallen Lia. She died three days later with her partner of eighteen years, Karen Marino, at her side. “When I heard Jenny was dead, my heart broke,” Foua told me. “I cried because Jenny had told me she wasn’t going to get married and she would never have any children of her own, so she would help me raise my children. But she died, so she couldn’t do that, and I felt I had lost my American daughter.”

Neil Ernst won the MCMC residency program’s first Faculty Teacher of the Year award. Peggy Philp became Merced’s County Health Officer, a post her father had held more than forty years earlier. They continued to share their pediatric practice as well as housework and child care, scrupulously negotiating what one of their Christmas letters described as “a blur of laundry, lunches, cleaning, patient care, newborn resuscitation, and resident teaching.” Their understanding of the Lees, and the Lees’ understanding of them, deepened significantly when they, too, experienced a child’s grave illness. During his last month of third grade, their elder son, Toby, was diagnosed with acute lymphocytic leukemia. When Neil tried to tell Dan Murphy about the diagnosis, he cried so hard he couldn’t talk. After one of Lia’s checkups, Neil wrote me:

Mrs. Lee had heard that our son had leukemia. It was truly amazing how quickly she heard of this. When Peggy saw Lia in our clinic, Mrs. Lee was very concerned about Toby’s health, how he was doing etc. There was very genuine concern expressed by her questions and facial expression. At the end of the visit Mrs. Lee was hugging Peggy and they were both shedding a few tears. Sorrows of motherhood cut through all cultural barriers.