Out of the Shadow of Leprosy: The Carville Letters and Stories of the Landry Family

Foreword

ix Foreword Hansen’s disease (HD) activist Stanley Stein wrote, “It is not what we have lost that matters most, but what we choose to do with what we have left.” Stein entered the U.S. Public Health Service Hospital in Carville as a patient in 1931. He went on to establish Carville’s international news magazine, The Star, and to lead the first organized patient advocate group for a disease. In his autobiography, Alone No Longer, Stein credits another patient, Gabe Michael, with inspiring him to become an outspoken voice for patients’ rights. Gabe Michael had founded the Patients’ Canteen in 1925 and the “What Cheer Club,” which would eventually become the Patients’ Federation. Though he died the year after Stein entered Carville, his altruism and untimely death were turning points for Stein. I knew the name Gabe Michael from Stein’s book, but I did not know the personal history behind his incredible story. Nor did I know his real name (Edmond G. Landry) or his daughter’s name (Leonide Landry Manes) until many years later. My first acquaintance with the Manes family was with Chris Manes, a student worker in the English Department at the University of Louisiana at Lafayette. One day in 1998, Chris came to my office and asked if he could close the door. Then, behind the closed door, he told me that he had overheard a conversation I had had the day before. He apologized for eavesdropping , but said that he couldn’t help listening. My article on the Mardi Gras at Carville had just been published in Journal of American Folklore, and I was talking with a colleague about my work with residents at the National Hansen’s Disease Center in Carville, Louisiana. Chris then told me that his great-grandfather, Edmond Landry, had been a patient at Carville. He had died at Carville in 1932, almost fifty years before Chris was born. All four of his great-grandfather’s siblings had been patients as well—members of x Foreword the Landry family from New Iberia. From 1919 to 1977, one or more of the Landry siblings were patients at Carville. Shortly thereafter, I received a phone call and visit from Claire Manes, Chris’s aunt. Neither had ever spoken openly in public about their family’s connection with Carville. Claire had no personal memory of her grandfather , who died thirteen years before she was born, but she had memories of his younger siblings and very loving memories of her grandmother and Edmond’s widow, Claire Landry, who had lived near the Manes family until her death. She could not recall, however, her grandmother ever talking about her grandfather as a patient at Carville. She did not learn of her grandfather’s illness until she was nine or ten years old, and her mother seldom talked about her father’s illness. From Claire and Chris Manes I learned that Edmond Landry’s “Carville name” was Gabe Michael. They also told me about the remarkable collection of letters, written from Carville by Edmond Landry and his brother Norbert Landry, that had been rediscovered by the family. The letters are forceful testimony of the daily life, the thoughts, and the anguish of leprosy patients at Carville before the term Hansen’s disease was in common usage and before there was any realistic hope for a cure. The letters are a record of their communications with family members while they were coping with an active case of a stigmatizing disease. They had none of the advantages of retrospection or the experience of improvement or cure that were typical of the narratives of former HD patients I had interviewed in the 1980s and 1990s. The letters, at times raw with emotion and at times mundane, were written at a time when there was little hope that they would ever be able to leave their virtual imprisonment at Carville. Aware of the bleak prognosis, Edmond Landry was able to chronicle his fears, his hopes, his frustrations, and at times his anger at being forced to live his life removed from his wife and young children. He was also able to maintain his compassion for others , to contribute to the welfare of fellow patients, and to find some meaningful way to live his daily life in spite of the emotional and physical pain he endured. Other families had multiple members enter Carville as patients, but none, as far as I know, have the extensive first person accounts of...