Pam Fessler - Carvilles Cure: Leprosy, Stigma, and the Fight for Justice

More praise for Carvilles Cure

By turns heart-wrenching, inspiring, and infuriating, this is a fast-paced and highly readable account of attempts by patients, their families, doctors, and American society in general to deal with the worlds most misunderstood disease. Written with the eye of an experienced journalist and the voice of a novelist, this book tells the storystranger than fictionof the patients, nuns, doctors, movie stars, and politicians who have struggled to come to terms with the stigma and discrimination attached to leprosy. The book is painstakingly researched and documented, and unfolds dramatically through the words of the patients and other participants through their letters and personal papers as well as newspaper accounts and interviews.

David Scollard, retired director, National Hansens Disease Program

[A] fine history, by turns heartbreaking and infuriating.... A caustic story told with empathy and a sharp eye for societys intolerance.

Kirkus Reviews

Polished and compassionate.... [Pam Fesslers] well-researched and articulate account humanizes sufferers and caregivers alike, and offers hope in the medical fields ability to halt the spread of contagious illness. Readers will be enlightened and encouraged.

Publishers Weekly

Heartbreaking and infuriating.

Tony Miksanek, Booklist

A young Carville patient at a Fourth of July celebration.

CARVILLES
CURE

Leprosy, Stigma,
and the Fight for Justice

PAM FESSLER

For David and Peter

Mercy is no substitute for justice.

SISTER CATHERINE SULLIVAN

Contents

I HAVE AVOIDED using the word leper to describe individuals with Hansens disease except in quotes or when it is unavoidable, as in referring to the Louisiana Leper Home. I have used leprosy more frequently, and interchangeably with Hansens disease, because it is the term still commonly used in many parts of the world.

CARVILLES CURE

IT WAS ALMOST nighttime when the rain began to fall in torrents, rushing down the side of the hill that Morris Kolnitzky and several hundred other American soldiers had fought so hard to climb. They were exhausted as they rested not far from Fort Pandapatan, on the southern Philippine island of Mindanao. Muslim rebels were holed up inside, determined to drive back the Americans. The infantrymen had been under fire all afternoon, caught between the shells launched from U.S. artillery mountain guns behind them and bullets pouring down from the fort above.

The soldiers had come within yards of the fort only to find it surrounded by ditches filled with sharpened bamboo stakes and by rebels wielding short, double-edged swords. The infantrymen fought back with their guns and bayonets, but within minutes dozens of men on both sides had been killed or injured. As the sun set, and the rain and fog rolled in, the Americans were ordered to retreat and to pull their wounded comrades to safety.

It was May 2, 1902, and Kolnitzky had arrived in the Philippines only a few weeks earlier, along with the other young men of the 27th Infantry. They were fresh recruits, brought in to quash an insurrection that had erupted at the end of the Spanish-American War. The soldiers had barely had time to adjust to the oppressive tropical heat and thick jungle terrain, let alone to the violence of battle. Kolnitzky was among the youngest, only seventeen years old. Lying there in the mud and the dark, hearing the cries of the injured men, he must have been terrified, knowing how easily a bullet or the thrust of a sword could end his short life.

What Kolnitzky did not know, as he waited in a flooded trench, was that he faced another, more insidious threat, one that no gun or bayonet could stop. And one that would eventually take his life. A tiny rod-shaped germ, Mycobacterium leprae, would enter his body, possibly there in the mud, or later as he camped in close quarters with someone who was already infected. The germ would quietly stew in Kolnitzkys body for years, duplicating at an extraordinarily slow pace, as he went on to start a business and raise a family back home in America. Over time, it would attack his peripheral nerves, causing numbness in his fingers and toes. It would turn his hands into claws and rob him of his eyesight. It would force him to flee from his home in the middle of the night to avoid being incarcerated for life.

As the 27th Infantry fought its way across the Philippines, a small band of nuns waged another battle halfway around the world. Their commander was the formidable Sister Benedicta Roach, one of four Daughters of Charity trying desperately to care for more than three dozen patients at the Louisiana Leper Home. The home was located on an old sugar plantation seventy miles up the Mississippi River from New Orleans, on an isolated strip of land that jutted into the river like an upside-down thumb.

The patients and sisters had been all but abandoned there. The plantation grounds were muddy and overgrown, and the housingformer slave cabins for the patients, an old mansion for the sisterswas dilapidated. The Louisiana air was so thick and humid you could grab it in your hands. Sister Benedicta knew that their biggest challenge was not leprosy but the mosquitoes that flourished around them and an unpredictable water supply. A few months earlier, her predecessor, Sister Beatrice Hart, had died from malaria and exhaustion.

In the spring of 1902 conditions were only getting worse, and Sister Benedicta decided to go to New Orleans to confront members of the Louisiana Leper Home Board of Control in person. The men balked at her request for more funds, but she would not back down. Gentleman, I shall be at St. Vincents Infant Asylum until four oclock this afternoon, she told them. If at that hour I have not heard from you, I shall make public appeal through the newspapers. The people of New Orleans will not tolerate having the sisters care for the lepers without even water to keep them clean.