The Second Life of Mirielle West
Page 38
She finished with the pin curls and left the patients on the roof to their lounging. On her way home, she stopped by house fifteen. Two of the rooms had been repurposed as a publication office and workshop for the colony’s new monthly magazine, the Star. There, she found Jean working at the mimeograph machine.
“Tante Polly,” Jean said, maneuvering her wheelchair around the table, papers in hand. She’d lost both her legs to infection a few years back but navigated her chair as nimbly as a shrimper steers his trawler. She handed the newly printed pages to Mirielle. “What do you think?”
THE STAR, read the banner. RADIATING THE LIGHT OF TRUTH ON HANSEN’S DISEASE. Inside were articles about the upcoming Hospital Day celebration, fundraising efforts for the Red Cross, and the American Legion Junior League baseball game. There was a ladies’ page and letters to the editor. Even Dr. Ross had contributed a piece on the new sulfone drug they were trialing in the infirmary.
“Looks great.” She handed the pages back to Jean. Depression had dogged Jean after losing her legs. Mirielle had been at her side through it all, but it was Jean’s work with the magazine that had brought the spark of life and mischief back to her eyes.
The supper bell rang, and Jean tossed the pages onto the workbench beside the mimeograph. Toby poked his head in from the office. He smiled at Mirielle, then locked eyes with Jean. Without a word, the two of them took off racing toward the dining hall, the wooden wheels of Jean’s chair barely missing Mirielle’s foot.
“Don’t forget about tomorrow,” Mirielle called after her.
Jean glanced over her shoulder and smiled. “I wouldn’t miss it.”
Mirielle trailed Jean out of the house and watched her and Toby speed away, their laughter echoing down the arcade.
She passed dozens of other residents on their way to the dining hall as she headed home. Many were new since her arrival and considered her an old-timer. There weren’t many of them, the old-timers, left. Madge and Mr. Li had joined Hector and Irene under the pecans. Every day she passed the growing rows of white headstones and felt a pang of loss.
The smell of frying catfish wafted from the cabin as she mounted the steps. An Andrews Sisters medley sounded from the record player.
“Just in time, chère,” Frank said when she entered. “Supper’s almost done.” The skillet popped and sizzled as he flipped the fish. His eyesight had worsened over the years such that even thick glasses hardly helped, and she worried about him at the stove. But he seemed to adapt to his dwindling vision as adroitly as he’d adapted to his crippled hands. He was among the second round of patients trialing Promin. While it couldn’t improve his sight or reverse the decades-old damage to his hands, she watched and rejoiced as every day he grew healthier.
She kissed him on the cheek, but he pulled her into a full embrace, releasing her to set the table only when the skillet began to smoke. She washed a bowl of strawberries from their garden and poured them each a glass of tea. Her tea was famous around the colony, but no matter how Mirielle tried, it never tasted quite as sweet as Irene’s.
Frank’s catfish, however, was as moist and flavorful as the first time she’d tried it. She ate a few bites but found her stomach unwelcoming of the delicious food.
“Tomorrow ain’t nothing to worry about,” Frank said. “You’ll see.”
“It’s been so long.” She turned and looked out the window, absentmindedly patting her graying hair. “Too long, maybe.”
“Nonsense, chère.”
The record ended, and Frank rose from the table to change it. Mirielle picked at her fish but didn’t brave another bite. Maybe tomorrow wasn’t such a good idea after all. Her gaze drifted to the cabin’s far wall where an assemblage of photographs hung beside yellowed drawings. Below sat shoeboxes crammed with letters. After a telephone was finally installed in the canteen, she’d rung monthly. But were pictures, letters, and phone calls enough to overcome the time and distance between them?
When the music resumed, it was no longer the Andrews Sisters’ swinging harmonies, but the jaunty fiddle and guitar rhythms of Frank’s old honky-tonk music. He returned to the table and held out his hand. “Dance with me.”
“Don’t be silly, we haven’t even finished supper.”
Frank didn’t move. Mirielle sighed and took his hand. They danced in the small space between the kitchen and sofa. Mirielle’s feet dragged at first, her thoughts far away. But soon her step livened, and she found herself laughing. When the next song played—a slow, crooning ballad—Frank pulled her close.
“Your food is getting cold,” she said, even as she laid her head against his shoulder. She closed her eyes and felt the worry drain from inside her. Ten years they’d been married, and his steady presence was still a refuge. Even today, couples couldn’t wed in Carville’s chapels, and some doctors on staff threatened to sterilize patients who snuck out through the hole in the fence to marry as she and Frank had done. Luckily, cooler heads like Doc Jack prevailed. She and Frank had spent a month in jail after they returned but had lived together in his cabin ever since.
* * *
The next morning, Mirielle dressed with care. She sat at her small vanity and stared at her reflection. It had been ages since she’d cataloged the lines and blemishes that marked her skin. Her disease had never advanced as far as many patients’ had. A few years back, she’d accrued eleven negative skin tests in a row before the insidious bacilli appeared on her slides again. Now, it wasn’t a question of beauty or disease, but whether she’d changed so much as to be unrecognizable. Frank insisted she hadn’t, but Mirielle wasn’t sure. Her life at Carville had been a happy one, but everyone here had their scars. If not on the skin, then on the inside.
They met Jean on the lawn beneath the oaks and waited. Jean took out her harmonica and played while visitors trickled down from the plantation house. One song became two, three, four. Despite the shade, Mirielle’s skin grew sticky with sweat.
Maybe they weren’t coming. Maybe they’d changed their minds.
Was it Mirielle’s imagination, or had Jean’s playing become slow and mournful?
Then another car puttered down the River Road, stopping at the guardhouse, before turning down the drive toward the big house. Mirielle squinted, trying to make out the passengers as they stepped from the automobile. Sister Verena greeted them and gestured toward the oaks.
“Is it them?” Jean asked.
“I . . . I’m not sure,” Mirielle said, even as her bones hummed with certainty. The new visitors crossed the lawn toward the hedgerow. Mirielle’s breath caught. Evie’s face had thinned, and her figure filled out. Her hair—the same chestnut shade as Charlie’s—was done up in the latest style. She was no longer a girl but a woman now, as sweet and lovely as she’d been sixteen years before. Her companion, Mirielle recognized too. Less by sight than by heart’s pull. Helen.
Mirielle ran. Through the dappled shade of the oaks, past the chapels, all the way to the hedgerow. There she hesitated. But her daughters did not. They rushed past the barrier and into her awaiting arms.
AUTHOR’S NOTE
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 car
e 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.
Those curious to learn more can visit the museum website, https://www.hrsa.gov/hansens-disease/museum, or check out these books: Carville: Remembering Leprosy in America by Marcia Gaudet, Alone No Longer by Stanley Stein, Miracle at Carville by Betty Martin, A Disease Apart by Tony Gould, King of Microbes by Johnny Harmon, Out of the Shadow of Leprosy by Claire Manes, and Carville’s Cure by Pam Fessler.
ACKNOWLEDGMENTS
Every book is its own journey. Sometimes, an author may feel like she’s navigating alone, but there are always guiding hands at play—prodding, questioning, teaching—and the book, in the end, is much the better for it.
Elizabeth Schexnyder, curator of the National Hansen’s Disease Museum in Carville, Louisiana, thank you for assisting me with my research. Your commitment to honoring the lives of Carville patients and staff inspired and humbled me.
Michael Carr, my agent, thank you for your honesty, your belief, and for pushing me toward a better story. My editor, John Scognamiglio, you give me freedom to create, while never failing in your support and wisdom. Thank you. And my thanks to the entire team at Kensington without whom this book would never find its readers.
Early readers Tonya Todd, Marycourtney Ning, and Veronica Klash. Thank you for all you bring to my writing and to my life.
My A Group: Jenny Ballif, April Khaito, Angelina Hill, Wendy Randall, and Amber Ornelas Frederick. Your sound advice never fails. Your support gives me wings.
The Garcia family. Estoy muy agradecida por su ayuda.
Writing this book reminded me how very precious family is—those you’re born to and those you find along the way. Steven and all those closest to my heart, thank you for sharing this journey with me.
A READING GROUP GUIDE
THE SECOND LIFE OF MIRIELLE WEST
ABOUT THIS GUIDE
The suggested questions are included to enhance your group’s reading of Amanda Skenandore’s The Second Life of Mirielle West!
DISCUSSION QUESTIONS
1. What assumptions did you have about leprosy before reading this book?
2. Patients at Carville fought for decades to promote the name Hansen’s Disease over leprosy because of its strong, negative connotation. What power, if any, does language hold in erasing stigma?
3. Who was your favorite character in the story and why?
4. Mirielle begins the novel a broken, selfish woman. But through her experiences at Carville, she is able to grow and heal. Are there instances in your own life that may have been unwelcome but forced you nonetheless to change or grow?
5. How is Mirielle’s approach to motherhood different at the beginning of the story than at the end? How does her approach compare to modern views of motherhood?
6. When Elena’s infant is whisked away to the orphanage, Sister Verena tells Mirielle it’s for the infant’s own good. Do you agree?
7. The title of the novel implies something akin to a death, followed by a rebirth for Mirielle. What moment would you identify as her death? At what point did her new life begin? Was it a gradual process or an immediate change?
8. Frank believes that hope is as essential as medicine in surviving their disease. How big a part does hope play in a struggle, particularly a struggle for survival?
9. For half a century, patients at Carville lived without the right to vote or marry or leave the confines of the hospital. Which of your freedoms would you most hate to give up?
10. In the aftermath of Carville and the tragic quarantining of Hansen’s Disease patients, society continues to grapple with pandemic infectious disease (think of HIV and COVID-19). In what ways have we as a society progressed in dealing with these diseases? In what ways have we remained stagnant? Does stigma still play a role?