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Mysterious and misunderstood, distorted by biblical imagery of disfigurement and uncleanness, Hansen's disease or leprosy has all but disappeared from America's consciousness. In Carville, Louisiana, the closed doors of the nation's last center for the treatment of leprosy open to reveal stories of sadness, separation, and even strength in the face of what was once a life-wrenching diagnosis.
Drawn from interviews with living patients and extensive research in the leprosarium's archives, Carville: Remembering Leprosy in America tells the stories of former patients at the National Hansen's Disease Center. For over a century, from 1894 until 1999, Carville was the site of the only in-patient hospital in the continental United States for the treatment of Hansen's disease, the preferred designation for leprosy.
Patients-exiled there by law for treatment and for separation from the rest of society-reveal how they were able to cope with the devastating blow the diagnosis of leprosy dealt them. Leprosy was so frightening and so poorly understood that entire families would suffer and be shunned if one family member contracted the disease. When patients entered Carville, they typically left everything behind, including their legal names and their hopes for the future.
Former patients at Carville give their views of the outside world and of the culture they forged within the treatment center, which included married and individual living quarters, a bar, and even a jail. Those quarantined in the leprosarium created their own Mardi Gras celebrations, their own newspaper, and their own body of honored stories in which fellow sufferers of Hansen's disease prevailed over trauma and ostracism. Through their memories and stories, we see their very human quest for identity and endurance with dignity, humor, and grace.
|1||Carville, leprosy, and real people : an introduction to a culture apart||3|
|2||"An exile in my own country" : the unspeakable trauma of entering Carville||25|
|3||"Through the hole in the fence" : personal narratives of absconding from Carville||61|
|4||Telling it slant : personal narratives, tall tales, and the reality of leprosy||88|
|5||The world downside up : Mardi Gras at Carville||116|
|6||"Under the pecans" : history and memory in the Graveyard at Carville||147|
|7||Remembering leprosy : postmemory and the Carville legacy||167|
|App. A||Carville death records on cemetery marker||184|
|App. B||Quotation from plaque at entrance to national hansen's disease museum at Carville||189|
Posted January 18, 2012
I recently read Moloka'i, written by Alan Brennert. Molokai is a novel about people diagnosed with leprosy and sent to live out their lives on the island of Moloka'i(late 19th and early 20th century through 1950's). I was so moved by Molokai that I used the "Author's Note" section in the book to locate additional information and books on Leprosy now referred to as Hansen's Disease. I learned that in the mainland US, Carville, Louisiana was the location of the National Hansen's Disease Center and where people in the mainland US were "exiled by law" for treatmeent of this disease. I ordered the book Carville, Remembering Leposy in America.
The books is compassionate and explains how a community was formed of patients diagnosed with this very serious disease; the Center in Louisiana was opened from 1894-1999 and served as home to such patients. As I read interviews from former patients, caregivers and loved ones, I was reminded that people handle serious issues with varying approaches. Some remain ignorant while others keep an open mind and continue to search for additional information that will eventually lead to solutions for improvement. Panic is a word that comes to mind as I read both books and considered the way the government handled this disease - books of this type help to "humanize" the stories and consider the lives of those diagnosed from their perspective rather than just from medical records and caregivers.
Reading stories like this - people with tremendous hardships that did the best they could - survived with happy and productive days - are indeed an inspiration to all of us.
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