The Second Life of Mirielle West

The inspiration for this story came from a small book I stumbled upon at my hometown library: Carville: Remembering Leprosy in America by Marcia Gaudet. In my mind, leprosy, or Hansen’s Disease as it’s preferentially called today, was a disease of far-off places and long-ago times. I didn’t realize the disease had once been endemic in parts of the United States or that between 150 and 250 new cases are still reported here each year. More than facts and figures, I was struck by the stories of those sent to Carville. Their sufferings and triumphs. The stigma they endured and fought to change. The Second Life of Mirielle West is based on these stories, no one person’s in particular, but on themes and events described by many. While the characters were born from my imagination, their circumstances are grounded in truth and history.

Carville began as the Louisiana Leper Home in 1894. Two years later, sisters from the Daughters of Charity arrived to help care for the patients. In 1921, the United States Public Health Service took control of the site, and it became the national leprosarium. Until the late 1950s, it was legal in most states to forcibly quarantine people with Hansen’s Disease. The majority of these patients were sent to Carville, many never to be released. After decades of failed remedies, Carville physicians pioneered a new treatment in the 1940s—sulfone drugs—which finally led to a cure. Eventually, patients were no longer forced to remain on site for care and treatment. But years of illness and discrimination are not easily overcome, and several patients chose to live at Carville until their deaths. Today, the site is used by the Louisiana National Guard and home to the National Hansen’s Disease Museum. I highly recommend a visit.

I strove to represent Carville and the lives of those who lived there as accurately as possible. To this end, I read memoirs and letters, histories and medical texts. I scoured old maps and perused articles in the Carville-produced magazine, the Star, and its predecessor, the Star Sixty-Six. But on two points, I did take liberties. Fever therapy was trialed on Carville patients in the manner described in the story, but not until the 1930s, a few years after the book takes place. And while the Mississippi did flood in 1927 and two large barges anchored near Carville for evacuation, they were never actually boarded. I hope the reader will forgive these minor embellishments.

In writing this story, I learned many things about the disease, and about my own biases and misconceptions. Hansen’s Disease is a bacterial infection. Contrary to popular belief, it is not very contagious. In fact, ninety-five percent of adults cannot catch it, as their immune systems readily fight off the bacteria. It is not the same disease referenced in the Bible. It is not the result of uncleanliness or an immoral lifestyle. Today, it is treated at outpatient clinics using a combination of antibiotics taken over one to two years.