by Neil White
In the early days, doctors and nurses were reluctant to come to the home. There was no running water, little sanitation, and no budget for improvements. The first residents shared the buildings with snakes and bats.
A compassionate physician from Tulane who had studied leprosy traveled to the East Coast to recruit an order of nuns to provide care for the leprosy patients. In 1896, the first of the Sisters of Charity arrived at the colony.
A series of bizarre events that began in 1914 altered the course of the colony’s history and led to its establishment as the national leprosarium. John Early, a veteran of the Spanish-American War, had been diagnosed with leprosy in 1908. A native of North Carolina, Early had been quarantined in a series of temporary posts. North Carolina sent him to Washington, D.C., where he was imprisoned in a tent on the Potomac River. Officials in Washington transferred him to a colony in Massachusetts, but authorities there refused to accept him. He spent years moving among boxcars, ramshackle houses, and jails. No state or territory would permanently accept him within its province. In late 1914, after six years of provisional quarantines, Early checked himself into the fashionable Hotel Willard in Washington, D.C., where it was rumored the vice president and several senators had also established residence. He invited the Washington Times newspaper editor and other reporters to gather in his room at the Willard. Early guessed that if he mingled among the powerful, if he demonstrated in a very public manner just how easily one of the four hundred lepers at large could walk among healthy citizens, a national home for victims of the disease would not be far behind. It took several years of public appearances for Early’s dream to bear fruit. But in 1917, Woodrow Wilson signed legislation authorizing $250,000 for the care and treatment of people afflicted with leprosy. They would be transported free to a yet-to-be-established U.S. leprosarium. Four years later, Carville was chosen.
Before the establishment of a national leprosarium, lepers were at the mercy of local officials or, sometimes, a renegade posse of men trying to protect their families. Some who contracted the disease were segregated from the general public in jails or dilapidated homes known as pesthouses. Not unlike the bells and clappers of biblical times, yellow flags or large quarantine signs were attached to the pesthouses to warn citizens of the danger of infection. Those who weren’t forced into quarantine lived in fear of mobs that threatened their families with arson. When a family member was diagnosed with leprosy, unafflicted relatives often fled to avoid neighbors who would ostracize spouses and children. There was widespread misunderstanding. Many still believed that leprosy was a disease of the soul, that the victim had been stricken by God for misdeeds.
Early intended to secure a home for himself and others with leprosy, but it brought about an unintended consequence: a new national policy of segregation tantamount to imprisonment.
Even though the new policy of mandatory confinement came from federal law, it was enforced by local officials. Enforcement played out differently depending on the fears, biases, and misunderstandings of state and county law enforcement officials. Some individuals who contracted leprosy were brought to Carville in shackles. Others were locked in jail cells until paid couriers, sometimes armed with handguns, could be hired to transport them to the leprosarium. In some states, if multiple family members were afflicted with leprosy, their home might be torched. An infected child’s toys, clothes, and books were incinerated. Parents were forcibly removed from their children. Children were pulled from the arms of their parents.
Fear of the disease was so rampant that arrivals at Carville took on new names to protect their families from the stigma. A gentleman named Stanley Stein, who contracted the disease at age nineteen and was later confined at Carville, wrote that he felt like “an exile in his own country.”
If there were any bright spots in the early history, it was the Sisters of Charity. The nuns were dedicated to the physical and spiritual comfort of the outcasts. According to patients’ accounts, the nuns’ kindness was the saving grace of the colony. One sister who arrived at the turn of the century told the patients she would never use the term “leper” to describe them. Instead she called them “my friends.”
Over the decades the residents at the leprosarium sponsored Mardi Gras parades, launched their own publications, organized a patient federation, Boy Scout troops, a softball team, and even a Lions club. The stories amazed me—as did the history of the leprosarium. The more I learned, the more intrigued I became with this extraordinary community of people who established their own rituals and traditions.
But the disease itself was even more evocative. One of the reference books that piqued my interest was an illustrated medical atlas with more than a hundred clinical photographs. I carried it with me around the colony, but I was careful about when and where I studied it. I kept it hidden between two notebooks.
In graphic and shocking candor, the photographs depicted the effects of leprosy at progressively severe stages. The patients at the beginning of the book, the ones identified as having the most immunity, looked relatively unscathed—patches of skin with pigmentation loss, eyebrows with no hair growth, minor abrasions. As I turned the pages and moved into the section that depicted the borderline diagnoses, I saw pustules and swollen faces, lumpy protrusions on the ears and forehead, torsos covered with red lesions. At the back of the manual, the images became more and more horrific. The patients with little or no immunity, a diagnosis called lepromatous leprosy, had feet so deformed and twisted I couldn’t tell if the toes had disappeared or if they had been grafted together. Noses were virtually nonexistent. Appendages were so disfigured that amputation might have been preferable. And patients suffering from a rare form of leprosy called Lucio’s phenomenon were left with huge holes in their flesh that looked like their skin had been eaten away to the bone by parasites. Their faces were scarred, consumed to the point of looking inhuman.
Black boxes were superimposed over their eyes to protect their identities, but Carville was home to the very last leprosy patients in North America. I assumed some of the patients here must have been featured in this book.
But the most worrisome revelation about leprosy—confirmed by Doc and the reference books—was that no one was certain how the disease was transmitted, no vaccine existed to prevent the spread, and no test was available to determine who was naturally immune and who was susceptible.
CHAPTER 13
My menu board illustrations had become popular with the leprosy patients. They especially liked my President Clinton caricatures. So I added more colorful illustrations and entertaining slogans to each day’s board. When the meal included Cuban Chicken, I sketched a portrait of Fidel Castro smoking a cigar, holding a chicken by the neck. On Mexican Day, I designed the text to fit inside a large sombrero, and I added Taco Bell’s slogan, “Make a run for the border.” The inmates and leprosy patients thought it was pretty funny; it didn’t amuse the warden nearly as much.
To get a jump on my early morning duties, I started to transcribe the menu board in the patient dining room every day after lunch. As I wrote on the board one afternoon, I heard a voice behind me announce, “Hey, they finally gave us one who can spell!” A gaunt black man wearing a hat and a khaki coat reached out to shake my hand. “I’m Harry,” he said with a crooked smile, “nice to meet you.” He looked like the man I saw waving through the screen on my first day. His hand had only two appendages—a complete thumb and part of an index finger. His other digits looked like they had been absorbed or maybe burned off. He seemed friendly. I didn’t want to reject him, especially since my own hand had been twice refused. But I didn’t want to touch him either. And how would I do it? Grab his finger and shake? Put my open hand between his thumb and index finger and let him grab on?
He noticed my hesitation. Harry’s smile disappeared. He put his hand back in his coat pocket. “You’ve got real neat handwriting.” He smiled again and told me to have a nice day. I looked around the room and saw the other patients. They exchanged g
lances and shook their heads. As I watched Harry walk away, I knew I had hurt his feelings. I wanted to call him back, apologize, and accept his hand.
But it was too late.
Little Neil, Maggie, and me on the visiting room deck.
CHAPTER 14
“May I please borrow your iron?” I asked again.
CeeCee had no intention of giving up her iron. CeeCee was a federal inmate, too, but she insisted that we use feminine pronouns when speaking to, or about, her. CeeCee’s shirt collar was turned up around her thin neck. The top four buttons on the tight green shirt were left open to reveal what would have been cleavage had she been a woman. I guess she figured our deprived imaginations would fill in the rest. CeeCee had altered her prison-issued slacks to look like capri pants.
“Nobody touches my iron,” CeeCee said, with a hand cocked on her hip.
My shirts were wrinkled, and Linda and the kids would arrive in the visiting room in less than an hour for our first visit.
CeeCee offered to iron my shirts. She said she would charge twenty-five cents per shirt, and she promised to have one pressed and ready by the time my family arrived. She bragged that she could iron pants better than a professional dry cleaner, that her shirts held up for days, even in the Louisiana humidity, and that she would even sew a Polo man onto the left breast pocket. “I can add starch,” she added.
I loved starch. I had always requested heavy starch at the cleaners. My shirts and pants were as stiff as cardboard. Starched clothes looked old-fashioned and stable. My clothes reminded older businessmen around town of a simpler, more genteel way of life. And I liked that.
I paid CeeCee in quarters and asked her to hold off embroidering the Polo man.
Two weeks had passed since Linda dropped me off at the colony gate. Anxious, in my perfectly pressed prison uniform, I stood in the hallway with the other inmates. We gathered behind a barricade the guards set up on visiting days. As families arrived, a guard would escort us to the visiting room to reunite with our wives and children.
Linda was late. After waiting about an hour, I started to worry. Maybe she’d had a hard time getting the kids ready by herself. I couldn’t help wondering if something had gone wrong. An accident. A flat tire. A family emergency. I felt helpless. I did the only thing I could do. I waited.
One other inmate had been waiting just as long. He said I shouldn’t be disappointed if my family didn’t show up. Sometimes, he said, they just can’t face another trip to a place like this.
The guard finally called my name. As I walked to greet Linda and Neil and Maggie, I hoped my children wouldn’t be shaken by seeing me in jail, as an inmate, in a prison uniform. I didn’t know how I would explain an inmate cursing or stealing. Or, God forbid, if they encountered a leper. How would I explain these things to a six-year-old and a three-year-old?
In the visiting room, my inmate friends were already settled in with their families. Doc sat at a round table in deep conversation with his girlfriend, a former nurse. Chief, a Native American inmate with long, silver hair, played a card game with his grown son. Steve Read, an airline entrepreneur, held hands with his wife, who looked like she was ready for a fashion shoot. Other families played dominoes or cards, like they had nothing better to do with their time.
My family stood next to the toddler play area. Neil and Maggie ran toward me. I bent down and hugged them both tight. They yelled that they wanted to go down the slide on the playground. I hugged Linda, and she gestured for me to go outside with the kids. She would wait on the deck. “We can talk later,” she said.
Maggie, Neil, and I played a makeshift game of baseball using imaginary bats and a racquetball, but the kids quickly grew bored. Little Neil had a better idea. He had been through one judo lesson in New Orleans. He grabbed my shirt and tried to flip me. I fell into his move so that I ended up on my back, sprawled on the grass.
An armadillo waddled toward the playground like a tiny prehistoric creature protected by nine bands of armor. It sniffed around the fence and then wandered off toward a ditch. I noticed the leprosy patients were out enjoying the morning too. Harry rode his bike along a concrete path. An overweight patient passed us in his cart driving toward the golf course. A woman with one leg zipped by in an electric wheelchair. For the most part, the patients ignored us. But one stopped and stared. Anne. She looked in our direction and stood with her hands on her hips. I struggled up from the ground and wiped the grass from my pants.
In her midsixties, Anne had a narrow face and dark circles under her eyes. Her hair was dyed black. When she was first quarantined at Carville, away from her family and alone, she fell in love with one of the other patients. A few months later she discovered she was pregnant. Anne knew the policy. Everyone did. It was simple, and cruel. Babies born to women with leprosy were taken away immediately and put up for adoption. It was possible for a quarantined woman to make arrangements with her extended family to care for the child, but like so many at Carville, Anne had been disowned. As far as her family was concerned, she was dead. No one in her family would take the child.
On the day Anne’s daughter was born, one of the nuns, a Sister of Charity, assisted with the birth. She washed and weighed the child. Then she wrapped her in a blanket and placed her in the wicker basket the Sisters had used for decades to transport the children born to leprosy patients.
Anne called to the Sister, “I want to see my baby.”
In the room next door, the nun collected the baby girl from the basket. She stopped at the doorway of the birth room and held the baby up high.
“I want to hold her,” Anne said, but the rules were clear.
The nun cried as she pulled Anne’s baby next to her own breast and turned away.
Just outside the prison visiting area, Anne watched as dozens of imprisoned fathers played with their sons and daughters. She was confronted with all she had missed. Even convicts were allowed to hold their children.
One of the other inmates on the playground noticed me watching Anne. “Surreal, isn’t it?” he said.
I nodded and looked over at my children. Neil practiced his judo moves on Maggie, who seemed perfectly happy to be flipped onto the ground and repeatedly fallen upon.
“First visit?” the inmate asked.
I nodded.
“Always tough,” he said, “especially on the wives.” His own daughter was seven. He considered himself fortunate. Inmates with teenage children, he said, had a more difficult time. Older kids seized on the fact that their fathers had broken the law and, consequently, had no right to tell them what to do. “Young ones don’t know any better,” he said. “They figure all daddies do a little time.”
I warned Neil to be careful flipping Maggie. She jumped up and said, “Daddy! I know judo, too!” Then she lurched forward and delivered a head butt directly to my crotch. Maggie smiled. She was proud that her move had bent me over. I patted her on the head and told her I thought she had a great future in the martial arts. One of the other kids asked Neil and Maggie to join them on the pirate’s ship.
I saw Linda on the wooden deck. She sat alone and stared out at the colony. She looked sad, and it was my fault. Neither one of us wanted to be here. And we were both at a loss for words.
Maggie, me, Linda, and Little Neil (left to right) in the courtyard at St. Peter’s by-the-Sea, Easter 1992.
CHAPTER 15
I met Linda in Oxford, Mississippi, in 1984 when we were both hired at Syd & Harry’s, a new restaurant that promised to change the way the small town experienced fine dining. We were both twenty-three years old. Before I met Linda, I had dated pageant girls. In Mississippi, they are everywhere: young women who spend an inordinate amount of time on makeup, hair, exercise, fashion, diet, and posture. I endured constant talk of calories and minute weight gain because the girls made me look good. To walk arm in arm with a girl who was always onstage, aware—or at least imagining—that people were constantly looking, did wonders for my image.
Linda
was different. She was as attractive as any of the pageant girls, but she would never have degraded herself by allowing beauty pageant officials to judge her appearance. Her light blond hair perfectly framed her taut olive face. Her nose formed a flawless angle above thin lips that revealed a bright and spontaneous smile.
Her loveliness matched her demeanor. In everything, moderation. A bit of each day spent outside with family, with a book, at a good meal, with a glass of wine—at the most, two. At the best restaurants, she would take four or five bites of the entrée and lean back, satisfied. She would say it was one of the best meals she could remember. Of course, I would finish mine, and eat the rest of hers, too.
When we met, Linda was a graduate student in literature and creative writing. I had assumed she’d come from a home where education and enlightenment had been handed down through generations. But she came from a family of Mississippi farmers. She was the first in her family to graduate from college.
Her relatives had treated me like blood kin. Her grandfather, a dirt farmer who amassed a fortune over the years, invested $10,000 in my newspaper business. After my terrible stewardship of his money, and everyone else’s, he spent another $5,000 to help retain my criminal lawyer. He kept no ledger when it came to family. There were no debts. Only gifts. When I asked how I could ever repay him, he said in a soft southern drawl, “Do the same thing for your children.” As I awaited my criminal sentence, he pulled me to the side and asked, “Does the judge have a price?” Then he winked and put his arm around me. We both knew he would never break the law, but he wanted me to know that if he were that kind of man, he would have done it for me.